Rocky Mountain Spotted Fever
Posted in Biochemistry on Jun 11, 2007
Petechial Rash on the palm of my hand from RMSF
Today, it has been 3 years since I recovered from Rocky Mountain Spotted Fever or RMSF – a disease caused by Rickettsia rickettsii, a species of bacteria that is spread by hard ticks. On one hand, it is kind of cool that I had contracted a relatively rare and almost exotic disease (only ~800 reported cases per year), on the other, I had a very good chance of dying (>30%) because I was never treated for RMSF with antibiotics.
I was traveling when I got the first symptoms so I took huge loads of painkillers to stop the headache and the muscle pain . The petechial rash spread out from my hands and ankles to the rest of the body sparing only the head. The headaches were unbearable and so intense that caused hallucinations of some sort; my extremities were swollen from the rash so that I could not properly walk, plus, there was a bouquet of other “beautiful” symptoms such as vomiting and fever.
This torture lasted for about a week. I went to see a doctor only after I began to feel better and only because I developed a complication – half of my face got paralyzed. To spare you a long and scary story, in the end, everything turned out ok, and even my facial muscles recovered after a few months .
Too bad, after all of these sufferings my case never got reported to CDC because I was not treated by the US physician. What a waste! RMSF spoiled my vacation and I didn’t even get a credit for being sick, it is not fair!
I found this PDF form on CDC’s website, do you think I could fill it out myself and mail to them?
Check out the petechial rash on my feet caused by bleeding underneath the skin:
Petechial rash of my feet. Day 3
And here is what my foot looked like a month after all that bleeding under the skin:
356 Responses to “Rocky Mountain Spotted Fever”
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[…] Rocky Mountain Spotted Fever – Chromatography – Today, it has been 3 years since I recovered from Rocky Mountain Spotted Fever or RMSF – a disease caused by Rickettsia rickettsii, a species of bacteria that is … […]
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I was diagnosed with RMSF around February/March of 2009 (If I recall correctly). I was in 11th grade (about 16 at the time). I went on a church trip to a lake in my hometown for geocaching on a Saturday. The days following the trip, my appetite had all but vanished, and I was feeling a terrible pain in my upper abdomen under my breastbone. Not being the type of person to seek medical attention unless I absolutely HAVE to, I waited the upper abdominal pain out for 7 more hours until I could no longer stand it.
My parents rushed me to the ER, where they did not know what was afflicting me for 2-4 days after being admitted. One doctor (to whom I am very grateful) diagnosed me with RMSF, and I began taking Doxycyline for several days. I began to get better, gaining back some of the 20 pounds I lost in a week at the hospital. However, like many of the people mentioned before me, I have not been the same.
I am now in college, finishing out my senior year/final semester, and I struggle to recall words and memories from even the day before. I have struggled with seizures that did not exist before my diagnosis, memory problems, attention/concentration problems, mental disorders including depression, anxiety, and possible bipolar II, general body aches and fatigue, sleeping far more than is usual/recommended and still feeling exhausted, etc. There are days when I feel very good, but it is short-lived and my overall quality of life has diminished. I am 22 now, but I often feel like I am 60 years old. I feel as if my IQ has dropped and I am not as mentally sharp or able to think on my feet as fast as I used to/should be able to.
Sorry for the discouraging post, but I wanted to share. I am intrigued by the posts concerning long-term use of doxycyline for some individuals to manage the long-term effects of RMSF (which ARE real and frightening to us who have been afflicted with this terrible disease). I may give my GP a call and see if he will prescribe doxy for my symptoms, though I’m afraid it won’t be that easy.
To offer some useful information as to how I’ve been able to cope with the mental fog/fatigue, I find that Adderall is usually VERY beneficial in relieving brain fog and bodily fatigue (it is prescribed). I am now taking prozac 20 mg daily to assess if depression might be another issue, though I am not very optimistic that I will find much relief (still staying positive!)
Good luck, everyone. I am sincerely sorry that anyone has had to go through this, and I hope no one else has to endure this.
-Adam
Dear Adam,
and all here who are concerned about long term effects of RMSF….it is a VERY REAL problem that is not acknowledged by many doctors, especially in the Eastern part of the country.
This is a disease that the body can kick during the acute phase, then it settles in and causes lyme-like symptoms. I have it, as well as Lyme. I recommend finding a lyme doctor, which there are many specialists that you can research and find. You should travel to see these doctors, as they can greatly improve the quality of life. You can live in a relatively healthy state with RMSF but you have to treat it aggressively, consistently, and constantly.
I have friends that have had good results with acupuncture and chinese herbs from lyme specialists the are Doctors of Oriental Medicine. I myself took 3 different antibiotics for 8 months at very high doses. Most people’s systems cannot handle this, but if you are young and haven’t had it for that long, it is worth a shot to decrease the amt of the bacteria in the body. If you go this route you should dose yourself with extremely high doses of probiotics, including saccharomyces boulardi, which counteract the antibiotics and prevent candida from growing.
After the antibiotics, I went on internal essential oils (you need to find a practitioner for this) and also did bee venom therapy (some people have allergic reactions). I also currently take lots of herbs and lots of medicinal mushrooms like Reishi and Turkey Tail.
It is very expensive to treat this disease, but you can do it completely naturally with herbs and oils for cheaper than going the western doctor route. See Steven Buehner’s website on treating Lyme for books. If you do these protocols for several years, you may even get the disease into remission. Also, I don’t go to doctors that tell me people can’t get better. It’s not true. Most people don’t do enough for long enough, and they give up. But if you persist, you will find a way that works for you. You don’t have to live in pain.
Good luck Adam, and all who are here on this site and suffering.
P
I was bitten Oct.2 2013. On Oct 6 I developed a mild rash on my forearms, and a bit on my knee, but it was only there for maybe an hour. It went away, later that day I noticed it again, except a little on my belly – and again by the time I left the park I was at w my kids, it was gone. It left my body completely and a few days later I noticed a mild rash again on my forearms, which within 20 minutes disappeared.
It’s now Oct. 27th and I feel good, have had no rash or other symptoms. I just thought it was odd I developed that rash and looked up symptoms of tick bites. Found this. Called my doc & he told me not to worry unless rash come back.
I don’t know if I should worry or not? Again, I have no rash, I feel fine. It could have been a rash from anything. I’m not sure. I don’t know if a rash from RMSF comes and goes like that? Can anyone help? I don’t have insurance, and just planned on heading to ER if I feel sick. I actually feel great. I am a little worried though – does this thing like…hibernate and then come back? Do you always feel off? Should I worry? My bite still itches but I am using benadryl there is a very small red dot still but going away when I use the benadryl. Please someone help me or give me some advice.
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Haven’t read all the posts, but sounds like most of you have tried conventional doctors only and are not happy for the most part. Have you thought of alternative medicine? I don’t mean instead of, but in addition to antibiotics, etc.? I had very good results. I took oregano oil before I even went to the doctor, which quelled the pain and even the fever a bit. Still went, because I realized something very strange was going on. Took a hydrogen peroxide IV while there. My fever went down a whole degree during the 3-hr treatment. That was before I even started the antibiotic.
2 months later, I am feeling sick again. I started feeling so well after my treatment that I went out in the horrible heat and humidity and did manual labor for the last few weeks, and I am 59. I don’t know if this is just a cold due to running myself down, or if it’s rmsf coming back. If it is back, I will absolutely use alternative treatments again.
If you think alternative if nutty, just ask yourself if you’ve been happy and made well with conventional. It sounds like it is failing many of you and I can really say I feel your pain!
Hugs to you all!
Gracie,
I don’t really know where to begin, but I went through pain and neurological problems for over 10 years before being diagnosed with RMSF. In the two years since Ihave been getting worse. Loss of balance, numbness, can’t even concentrate on a TV show. I remember getting he illness well because I was hospitalized for a month and they could not find out what was the matter and that was now 12 years ago. Now I cannot work, and have trouble even walking or remembering anything. if you know of anyone who can treat this or at least slow down it’s rapid progression please share it with me. At the present time i am trying to et into the Mayo Clinic in Florida. I have no problem speaking with anyone who knows anything about this problem. please give me a call at 404-234-3955 or email me. I also take text. I a a 58 yearold male. thank you.
Dear Jim, You must see a lyme literate physician! I know there is a couple in florida. Mayo, is good for many things but not tick borne disease. Join facebook group: Lyme Disease Awareness – members there have a ton of firsthand experience & suggestions that you can trust (for the most part) also contact ILADS dot org for more info. You must be your own advocate (which is what I know you are trying to do) You can also join facebook group: Lyme and tick borne disease –& I will try to help you as much as I can. Best- Kim
Dear Adam,
and all here who are concerned about long term effects of RMSF….it is a VERY REAL problem that is not acknowledged by many doctors, especially in the Eastern part of the country.
This is a disease that the body can kick during the acute phase, then it settles in and causes lyme-like symptoms. I have it, as well as Lyme. I recommend finding a lyme doctor, which there are many specialists that you can research and find. You should travel to see these doctors, as they can greatly improve the quality of life. You can live in a relatively healthy state with RMSF but you have to treat it aggressively, consistently, and constantly.
I have friends that have had good results with acupuncture and chinese herbs from lyme specialists the are Doctors of Oriental Medicine. I myself took 3 different antibiotics for 8 months at very high doses. Most people’s systems cannot handle this, but if you are young and haven’t had it for that long, it is worth a shot to decrease the amt of the bacteria in the body. If you go this route you should dose yourself with extremely high doses of probiotics, including saccharomyces boulardi, which counteract the antibiotics and prevent candida from growing.
After the antibiotics, I went on internal essential oils (you need to find a practitioner for this) and also did bee venom therapy (some people have allergic reactions). I also currently take lots of herbs and lots of medicinal mushrooms like Reishi and Turkey Tail.
It is very expensive to treat this disease, but you can do it completely naturally with herbs and oils for cheaper than going the western doctor route. See Steven Buehner’s website on treating Lyme for books. If you do these protocols for several years, you may even get the disease into remission. Also, I don’t go to doctors that tell me people can’t get better. It’s not true. Most people don’t do enough for long enough, and they give up. But if you persist, you will find a way that works for you. You don’t have to live in pain.
Good luck Adam, and all who are here on this site and suffering.
P
Hi Jenn,
I am also looking for a doctor on the central California coast to treat me for RMSF.
I had 8 wks. of Doxycycline and my symptoms went away…. for a while. I was diagnosed in 2010 after having it apparently since 1998. Was working as a Land Surveying Tech in Santa Barbara, Kern, Los Angeles, and San Luis Obispo counties & I had multiple tick attachments over the course of 2 years.
One of the companies I worked for offered Lyme Disease vaccinations for the field crews but I didn’t receive it and was laid off soon after the vaccinations began. It seems that a medication (interferon) I was taking while surveying may have dampened the effects of RMSF for a while… until I stopped taking it in 2006.
The first doctor I saw at Sansum tested me & then kicked me to the curb because I wanted to be tested again in 2-3 weeks, tested for Q Fever & I wanted to have him report it to Santa Barbara Public Health, but he refused. Dr. Fisk @ Sansum said that RMSF did not exist in California.
The doctor that treated me 8 wks. w/Doxy at UCLA-Santa Monica told me he could do nothing more for me. I have tried UC San Diego and the ID doctor only offered her opinion & she doubted the validity of my Mayo Clinic, Calif Public Health & the CDC positive test results for R. rickettsii & R. akari.
I’m trying to get into see either Dick Jacobs, MD or Jane Koehler, MD, professors of infectious diseases at UCSF AND ALSO Stuart Cohen, MD, professor of infectious diseases at UC Davis.
I am not sure how this website works… but I will post the outcome of my efforts either to you directly or to this forum.
Walt-Santa Barbara County, CA
My son is going through the same thing. First doctor, he tested positive for RMSF. They just gave him the antibiotics for 7 days. As soon as he went off the antibiotics, he relapsed big time. He could hardly stand up, couldn’t catch his breath and couldn’t eat. Took him back to doctor, he refused to believe it was still the RMSF yet websites like this and others, told me different. After seeing 5 doctors, finally found an infectious disease doctor who promptly had a picc line put in his arm and started him on antibiotics intravenously. He told us if you wait too long for treatment…this is the only way to treat it. He takes antibiotics every day for a month!!! They teach you to do it yourself. He was feeling much better but relapsed a little last week. They check his blood every week. They said there are three factors they check in the blood for RMSF. The first is white blood cell count. As soon as you start antibiotics, these go back to normal. The other two factors, take awhile to go back to normal and that is what they are watching right now. These still are not normal so he isn’t well as yet. If you think you have RMSF….you must have an ID specialist treat you!!!
I had RMSF this past spring (2011). Came down with the headache, chills, left arm and shoulder aching, neckache and blurred vision while on our anniversary trip. We spent the night in a very nice hotel and ate in their restaurant. I hardly remember anything but the pain. My wife cared for me as she could, and drove us back home the next day. Went to a Nurse Practitioner the next morning and they took a lot of blood samples and even had me on an EKG due to the left side focus. Three days later the wife (who works at that practice) told me when I came home. They decided that I could postpone the antibiotics for a week since my symptoms had subsided. We were going to the beach for vacation, and you can’t go out in the sun on the antibiotics. I started them (20 days worth) as soon as we returned from vacation. I still get more headaches than before, and they seem to start in my neck. My left side is also still a focus for aches and pains, even though I am very right-handed. I think that the NP did a great job in interviewing me and noticing the symptom descriptions. I think that it was the first case of RMSF that he had seen, too. I realize that with the damage the bacteria did to my body it will be a long time if ever to fully recover. I’m 59, so the body isn’t healing fast, either. I just hope that the lasting effects don’t deteriorate. My vision has recovered, and I feel safe riding a heavy motorcycle. I’d like for it to stay that way for a long time!
google this dr, she currently lives in South Africa… Cecile Jadin… she has researched & published her writings as well as treated patients with Chronic Rickettsial Infection. I think she has the cure to this horrible organism… http://chronicfatiguesyndrome.co.za/
Hello Lynne, The doctor did say I had cronic rmsf. I went back to see her after my two week does of doxycycline. I told her I felt no better. I asked if I need to take another round of meds and she said no.She said I have had this a long time and it will take a while to get better. When I asked her if she needed to retest me she cut me off short and openedthe door as to say”your time is up” Anyway I am in my 8th month out of work. I’m trying to an appointment to see a doctor at Duke. I hope you are feeling well.
Ohhhh Tommy… I would LOVE to visit your dr and just let her know how serious this IS!!!
You have to get another Dr! I have the email address to a lady in the states that actually visits Dr Jadin in South Africa for her treatments. My dr here, in Huntsville Alabama , has agreed to treat me via Dr Jadin’s protocol. I printed all of her research that I could find off of the internet, and took this info to my Dr., he was very excited to read the info. I am going to visit the Infectious Disease Dr here in Huntsville,AL. Mainly to entertain me and my regular Dr., because the I.D. Dr in HSV,AL DOES NOT believe that I had RMSF…even though I was tested, diagnosed and treated at the hospital… and yes, tested positive for Rickettsia. One of the points Dr Jadin makes in her research is that Rickettsia will NEVER go away 100%. Treatment may take many, many months up to several years before a patient begins to show signs of improvement. And you must be treated with alternating Tetracyclines!!! Tommy, did you go to Dr Jadin’s website? You MUST READ her research. Tommy, email me and I will give you the contact info for the lady in the States. I sent Dr. Jadin an email asking for her help, she personally responded within 2 days. She also has a FaceBook page. email me at smith9114@knology.net
We all have to get together to fight this battle, there are too many doctors in the US that either don’t care, don’t believe or simply enjoying watching their patients suffer. I feel certain that if we join together and share Dr Jadin’s research all across this Rickettsia infected country, then the medical community will have to listen, and they will have to help us… or one of us needs to become a Dr here in the US and take on this issue ourselves!
Talk to you soon! We Will See Good Health Again, I KNOW we WILL!
Lynne
Tommy,
I am not certain if my last reply will post or not…
Even though Dr Jadins website says Chronic Fatigue Syndrome, she has linked her research scientifically to RMSF, or Chronic Rickettsial Infection.
PLEASE google Dr Cecile Jadin , and/or go to the website I previously posted. She lays out her protocol to her recommended treatment with Tetracylines. They get changed out and rotated each month you take something different.
If my first reply does not post, I will send you what I said, along with my email. I have more info to give to you!
We WILL get well!!!
Lynne
Get to an infectious disease specialist pronto! You have to have the antibiotics intravenuously for at least a month!!! Oral ones will not work with chronic RMSF!!!
I was told all my life I had this when I was a baby. (I was born and lived all over Colorado until I was three) I am now 26 and for the last 5+ years have had severe neck pain that comes with severe headaches, joint pain, fingers that break from doing silly things – like mopping, or sanding a piece of wood, and for the last year I have had trouble recalling simple words, I finally looked up long term effects of this disease, and found this website. Any one know of a good doctor in Central to Northern California?
Thanks for all the posts on this site. I had what appeared to be a swollen mosquito bite on my hand one day at work. When I got off work I had bite like marks all over my feet and ankles. By bed time that night it was spreading up my legs. I woke in the morning with my lips and one eye swollen closed. The rash had spread all over my waist, stomach, sides and back. My doc treated me for an allergy. Two days later, the rash was growing and moving around my body by the hour. I had SEVERE joint pain in my neck, spine, hips legs etc. Hands and feet were red and swollen. My feet felt like I was stung by beeds on the bottoms. I had a fever and started vomiting. Sweats, teeth chattering chills etc. The next day I woke up with a swollen tongue and a very sore throat. Since I am out in the woods every weekend camping and fishing I began reasearch on Lyme disease and RMSF. I have lived in Montana all my life and was raised to be aware of ticks and RMSF. I had 13 out of 14 dymptoms for RMSF. My throat did not swell up though. My doc got me on Doxy and Prednisone asap without reviewing any bloodwork. I began to feel better within two hours. It has been two weeks since this all started and I am still am having some affects, but doing much much better! My hands feel as if they are stuck in ice cold water, but burn like heck if I put them in luke warm water. I have joint pain every two days in different areas. My thumb felt broken for two days, then got better. After spending all day on the river rafting, my knee was swollen and felt twisted. It was better the next day. Yesterday my lower back started hurting. Today I can barely drive my truck and get out of a chair. It feels as if I hurt it lifting something heavy. I have not. I am thinking I might need another round of Doxy to make sure the RMSF is gone. I am 33years old, have lived a healthy active lifestyle here in MT. Anyone out there get re-occuring affects and have to take another dose of antibiotics? Thanks.
Some doctors now believe that long term treatment with antibiotics is required for some patients. I’ve been taken Doxycycline now 7 months. It has helped tremendously. I’ve tried to reduce to one pill a day a couple of times but the symptoms come back so I’m staying on 2 times a day. Here is a link to an article about a law passed in Texas regarding this treatment. Unfortunately some places do not support doctors who try this approach. http://www.prohealth.com//library/showArticle.cfm?libid=16308
If the link doesn’t work, do a search on the site on Texas.
I live in the foothills of S.C. on the border of N.C. I was hospitilized in June 2010. After going to 3 hospitals with 107 fever, rash, severe headache, neck stiffness,abdominal pain. I was FINALLY diagnosed w.RMSF. Albeit almost too late. Even though my Fiance’ repeated over and over for me to each ER Doc (as I was barely conscious) “WE LIVE ON A FARM IN A HEAVILY WOODED AREA WITH LIVESTOCK”. I had most every symptom and characteristic of this disease. I still have severe complications and am fortunate enough to have found a Doctor(MD) who has had wilderness training. That being said not much seems to help the headaches,numbness in hands and feet, ect. Good Luck to all who battle this disease- apparently its a keeper.
Hi I am reading all this with interest. RMSP used to be very common here in Colorado, Lots of ticks in the spring and summer. Thing is, most people who got it had a full recovery after a short spotted illness. In fact, the bacteria given from the tick served to make you stronger as your immune system gained strength to get rid of it.
That was when I was a kid many years ago. Nowadays I wonder if the illness has morphed into something more sinister. It seems that lots of things that used to be pretty harmless have become more damaging – the environment as a whole has become less friendly. For example Guardia in the rivers and streams these days. As kids we used to drink right out of the mountain streams, no more. Something will do you in.
how long did it take for the rash to spread from your ankles and wrists to your whole body?
2-3 days…. it was quick
Victoria, My rash started with one red dot on the top of my foot and within 24 hours I was covered! Doctor #4 saved my life, sort of! I started an open group on my fb page, called, “Survivors of RMSF and Lyme Disease.” Also known as gottick@groups.facebook.com if you would like to take a look. I started the group to help others and look for information, but it turns out that I have been helped tremendously!
Hey Angie,
I’m going to check out your website. I have been unable to work for over five months now. My family Dr. has sent me to every other Dr. in town( card, pulma, endo,) you name it I’ve seen them. Two weeks ago I started seeing a new family Dr. and she took new blood work and informed me thatI had cronic rmsf. I am 47 male that has always kept myself in good shape. Starting well over a year now I started getting very tired around mid day. So tired I was taking a nap in my car everyday. I was having what I thought were very bad migraines. I get so tired and winded after just a few minutes of activity, and I have very bad GI problems(belching, bloating,acid reflux). My wife thought I had just lost my manners. Joints are very very sore. I was just amazed at the number of post on this subject.
I keep thinking and hoping I’ll just wake up one morning and spring out of bed and head out to work.
Anyway It feels good to be able to vent and let it out.
I wanted to ask Tommy, did you ask for the dr to check for chronic RMSF? I would have swore that you were me with everything that you wrote. I was bitten June 2009, and infected with one of the Rickettsii ‘s. I am scheduled to see a GI dr 8/12/11. Extreme exhaustion to an unbelievable degree… and the pain in my legs just trying to walk to my office from my car, or to my classroom from my car…. Have they given you any hope of a treatment? a cure? Gosh, I hate ticks worse than I can describe! So very glad to find this page, and will get on FB when I get home! Thanks! Lynne
4:00 am – up again. so glad I found this sight I feel so alone, that is up till now. One little tick — so many problems. How do you stop the headaches. They are piercing like knives…
Get to an infectious disease specialist immediately…you need to start on antibiotics intravenously…oral ones will not work for chronic RMSF!!!! My son is going through it right now. Thank goodness we finally found one who would listen to him and he is doing soooo much better!!!
muscle building supplements…
Among many articles I have read about loose belly fat fast I found Rocky Mountain Spotted Fever | Chromatography is more interesting than the others….
had a response from cdc.it is to long to comment here.can forward the letter to any that want it.bert. brsargent@copper.net little by little. i contacted cdc several times and some one was helpful this time.have other info but want to check on it with the va doctor first.
my main symptoms were body pain, fatigue and falling. was checked for ms but negative, this went on for at least 1 1/2 yr before diagnosed with rmsf. I took round of antibiotics and the only change is the pain is worse!!! sometimes it is unbearable and i just cry. im missing work and time with my family. I cant find anything on delayed treatment and complications of rmsf. any help would be appreciated.
My daughter who was around 34, had severe RMSF several years ago, was hospitalized and when sending her home, she was ill for quite sometime until she decided to go on a vegetarian diet. Her Husband had heard a radio show where a doctor recommended it for all kinds of autoimmune diseases so she decided to try it. People called into the radio show that had physical problems and had made remarkable improvements after going vegetarian (vegan is even better). It sounds severe but it worked very well for her and was the only way she could lead a normal life. Occasionally she would regress slightly but it helped her tremendously. She is well about 97% of the time now but she has started having an even higher percentage of well days when she fasted for a few days to clear her system of toxins. After this she feels wonderful by staying on a vegetarian diet and eats as much organic foods as possible also…has her own garden now, etc. Then about six months ago she had been feeling so well that she decided to eat healthy, but instead of strictly vegetarian, she started to eat chicken, fish but stayed off the wheat gluten. So far she has done quite well on this regimen. If she hadn’t started eating vegetarian, I strongly feel she wouldn’t be leading a normal life. This very healthy diet helps so many different ailments and helps with various autoimmune diseases as well. Whenever she starts having bad days, she fasts for as long as she can take it, laying low, drinking electrolytes then stays on this healthy diet. I am not sure how she can stay on this regimen so well but she said it is well worth it to her so she can lead a normal life. She goes off the diet so rarely but when she does, she gets sick with joint pain, total fatigue, nausea, and even some depression. If anyone wants to try this and after you get yourself regulated and feeling well from eating properly, then you can gradually introduce other things back into the diet to see what you can and can’t eat. She stayed very strict on it for at least a year before she did this but the more fruits, vegies, organics one can eat with no gluten, the better one should feel.
pam, info is is few and far between. latest i found is on http://www.bio.davidson.edu/people/sosarafova/assets/bio307/liwo bet they worked all night to come up with that . i plan to write to some of the people about info in this art. if you are a smoker quit for a few days and see if it helps on the fatigue part. all of your 3 body systems,at least for me,is about the same for the last 18 months. get some sawyers clothing spray for the kidS.
CAN ANYBODY TELL ME HOW LONG I HAVE TO DEAL WITH THIS JOINT PAIN? I TESTED + 5 YRS AGO FOR RMSF. AFTER I WOKE UP ONE DAY AND COULD NOT MOVE. I THOUGHT I HAD BROKE MY NECK OR BACK SOMEHOW. I SCREAMED HELP ME! MY HUSBAND WOKE UP. CARRIED ME TO THE TRUCK AND RUSHED ME TO THE HOSPITAL. THEY PUT ME IN A NECK BRACE AND ON A BACK BOARD. AFTER TONS OF TESTING AND EVEN A SPINAL TAP, I WAS ADMITED OVER NIGHT. NO DOC. CALLED ME WHEN I WENT HOME. INSTEAD, THE LOCAL HEALTH DEPT. CALLED ME AND TOLD ME I HAD RMSF. I THOUGHT THIS LADY WAS CRAZY.. SO I CALLED AND HAD MY FAMILY DOC. CALL HER N GET RESULTS. SHE CALLED ME BACK AND TOLD ME TO GET TO HER OFFICE A.S.A.P.!! SHE GAVE ME SOME MEDS.. AND ABOUT 3 WEEKS AFTER THIS ALL STARTED I WAS ABLE TO WALK JUST ABOUT 10 FEET.. AND THEN HAD TO REST.. WELL 5 YRS LATER.. I STILL CANT WALK MUCH.. THE JOINT PAIN IN MY HIP’S,KNEE’S IS STILL SO BAD I AM STILL HAVING TO SEE DOCTORS… I HAVE 2 KIDS.. NOW THEY ARE 6 AND 9 YRS OLD. I AM 28 YRS OLD.. I JUST FEAR IF THIS KEEP UP I WONT BE ABLE TO GET AROUND AT ALL SOON. I JUST WANNA RUN AND PLAY WITH MY BOYS.. CAN ANYBODY TELL ME WHAT THEY THINK PLZ.. THESE DOCTORS ALL SEEM DUMB-FOUNDED!! HELP PLZ.. MY E-MAIL IS: card_queen420@yahoo.com
You truly got what it’s all about across with this post, I couldn’t agree further with every thing which had been stated. Good work. By the way I love the style of this website and I am eager for more blogposts by you.
an over all view of rmsf , http://www.textbookofbacteriology. net/rickettsia.html may be of help. bert brsargent@copper.net any one found any additional info? a lot of info on the web but it is hard to find.
the current going on with me is is with dora,colo medical board for medical complaints. i went to an id doctor to learn about long term affects of rmsf. neither the doctor or medical board has given a reply. i am certain that some of my problems stem from rmsf and as well some of my findings agree. observation,all things move slowly in the medical field except the receipt from billing, bert sargent
I was diagnosed with RMSF in 2000. I was 16 and had just come home from summer camp. I didn’t know I had been bitten, but became very ill within a week of returning home. The doctor said it was the flu and I’d have to wait it out. While waiting it out on the couch with the worst fever and body aching I’ve ever had, I had a vision of myself dead. I could see my funeral. I began sobbing and begged my parents to take me back to the doctor. I knew it wasn’t the flu. When the fever never broke, they took me back to the doctor and they took a blood sample. They said they’d call in 24 hrs. THey called an hour later saying I had kidney failure and to take me to the ER. On they way to the ER I noticed the rash spreading up my leg. Within a few hours the rash had spread to both legs and was spreading up my body. It didn’t itch, it just looked horrific. The doctors put me on antibiotics immediately, but they didn’t seem to know what was wrong. After a few days they came to the conclusion it was RMSF; however, my tests came back inconclusive. Now, ten years later, I’m exhibiting what could be long-term effects: brain fog, fatigue and weakened vision (which I’ve had since the initial illness), Needles/tingling in the feet and lower legs when I first stand in the morning, join pain in my knees. These last couple of symptoms have started within the last couple of years and seem to be getting worse. I don’t know what to do. I suppose I should see a doctor about it, but they don’t seem to do anything but rush people out the door. I was glad to find this site. I’m glad I’m not alone.
I have had RMSF for 4 and 1/2 years and I had all the antibiotics they could give me.My knees are almost gone and the pain in my leggs is unbearable. I am tired and unhappy from this , My knee dr puts shot in my knees every three months and says it is NOT from RMSF but my everyday DR says yes it is…..what do I do next? I wont take pain meds. I hurt and its heading towards my hands and back now, The arthritis came up so quick after the intial diagnose. Do I need more antibiotics? PLEASE HELP…………EMAIL ME OBLONDEE65711@YAHOO.COM
nancy,nov 29 entry. it appears that little is known on the subject of the after affects of rmsf. look up virus and bacteria. also rickettsia. a starting on learning about rmsf. have not found any affects on long term illness. i feel there is but have not found any to speak of. in my case the circulatory system is affected by the contraction of the small blood vessels, between the arteries and veins, my knee muscles are very weak. also have a post nasal drip that needs a new washer. keep looking for info and if all pools their findings?
My husband was diagnosed with RMSF last October, 4 months after he had a tick bite. He didn’t have a rash or high fever. He was sent to a neurologist for severe memory loss, extreme fatigue, weight loss, and aching joints. She tested him for RMSF and he was positive. He was on antibiotics for approximately 6 months and he still tested positive. He was told since it was so long before he was treated he may have chronic RMSF. It is over a year later and things haven’t improved. In fact they may be worse. He is still extremely fatigued, sleeps longer and longer periods, has chronic joint pain, and his memory is getting worse. Does anyone have any suggestions about what we can do to help him?
I can tell you that I had RMSF for almost 2.5 mo before being diagnosed and had the same effects as your husband. I was placed on prednisone and toradol to manage my joint pain and that did help. Of course there is weight gain from it. I am still struggling with long term effects. I do have memory laspe from time to time. I have had an enlarged liver; plueral effusion; lots of edema all over my body; fatigue; esophageal spasms cause intense chest pain to the point I was tested for all kinds of heart problems and now having GI issues with vomiting and watery stools. I cannot eat solids without vomiting so pretty much been stucking to liquids. I have not had much success with anyone who can treat me as no one where I live deals with long term effects and quite frankly dont know of any doctor who does. Hope this helps a bit. Good luck!!
hi nancy , first off how is your husband , i would realy like to know , i’m 53 an was diagnosed with rmsf 12/3/2010 an was started on doxycline hyc 100mg 2x daily , an will be on this for a month then retested ,it’s belived i contracted it april 2008, i totaly understand what your husband is going through , the stuff has realy taken over my life , i would be interested in chatting with eather one of you if able , thanks joe jrm4337122@yahoo.com
e mail at top should read brsargent@copper.net,opps. bert
if the doctor is correct would we,with rmsf, be a carrier for the bacteria? i am filing a complaint with the colo medical board on a doctors lack of giving me an evaluation after a visit. information is little and far apart on the long term affects. it has an affect on muscle and circulatory systems from what i have found out. post any info you find out.thanks,bert brsardent@copper.net
I just wanted to say that I am so thankful for this post! After months of losing my mind, spending whole days crying in bed, wondering what could possibly be wrong with me. Praying to God for a diagnoses. Not only did I suffer from these symptoms, but I watched as my husband and 4 kids suffered right along with me. To me, that was probably the most disturbing and utterly heart breaking thing to watch.
It is great to be able to hear what others have gone through that have also been diagnosed with RMSF.
I was diagnosed with RMSF last week, after a blood test confirmed an IgG Titer of <1.64. Basically meaning that I have a very low amount of antibodies present, so this indicates a current or recent infection of RMSF.
I actually didn’t want to believe that it was RMSF because I have been sick since August 2010 and out of 5 doctors, only one finally performed the Rickettsia test. I was told by other doctors and 3 emergency room visits that well sorry, we just can find anything wrong.
My symptoms started out very gradual in August. First, I just felt like I was coming down with a cold and felt under the weather. This didn’t happen everyday. My symptoms kept getting closer and closer together as the months went by and finally peaked two weeks ago. They included low grade fever, nausea, headache, memory trouble, brain fog and confusion, mild muscle pain, chest pain, burning sensations throughout my veins, severe anxiety (panic attacks) sleep disturbances and I couldn’t think my way out of a box. I felt like I had the worst flu ever and had to have my in-laws care for me and pick up my children from school. This has been by far the worst experience of my life. I also never developed the rash, but according to the “text book” symptoms, 10-20% of victims will not develop a rash.
Iv’e been on doxycyline since Thursday of last week with mild improvement. The anxiety is gone and the flu-like sick feeling is gone, but I still have that overall feeling that something is not “right” as well. Every day is still an effort to get through.
I too, am scared and concerned about completely recovering and wondering if feeling well is now just a memory and this disease is something I am going to be forced to come to grips with forever.
This is my story so far. I also too, questioned whether or not I could have gotten a false-positive on the blood test. My doctor said it was possible, but not probable. Basically blood tests are “yes” or “no.” Not maybe. Since my IgG Titer showed up and not the IGm Titer, doctors will use the IgG Titer as the standard for determining positive results for this illness.
Hope this info helps and any feedback would be great as well. Best of luck to you all and what a blessing that we are all still alive!
I
I have had similar symptoms and Also had a blood teat performed and read 1.64 . I had another test performed 3 weeks later with identical results. For the last four years I have been fighting the same Symptoms and finally found my diagnosis was rmsf. I had taken 2 cycles of doxycyclene and finally got my dr. To put me on hydrocodone 5 mg. I ran out of meds and my dr. Refered me to a pain mgmt specialist and a infectious disease specialist but it will be 4 weeks on the Id dr. And 12 weeks on pain dr. I feel like I have relapsed since being off meds and am getting very frustrated. Anyone know a good rmsf dr. In ky? Lou
Laura, I was you 21 months ago and I wish that there had been someone available to help me figure out what to expect long term. Three doctors and one hospital missed my textbook symptons. By the time I found doctor #4, I was certain that I was going to die. I couldn’t walk, get dressed, brush my teeth or work. My ankles were swollen three times their size, my body was covered in a red rash and I had a fever for 48 days! The pain was unbearable! I have documented everything from the beginning and am on three ring binder #3 which is filled with my journey through this awful disease! I didn’t know that this disease can go on and on with continued health problems. I’ve had problems with my feet that didn’t show up until 7 months after I was diagnosed. I had a tumor in my finger and a bone graph this past August. The fatigue is awful and this past March I had to resign from the school system. My skin still pinks up during the day and my ears ring or flutter at night. I’m told all the time how lucky I am to be alive. It has been a long road without much help. So many people do not understand this disease and I can’t find a doctor who knows much about RMSF. I was training for a race when this all first started and I couldn’t find a doctor to listen to me. It seems to be the gift that keeps on giving! This past July, I found a drug so that I can feel my feet as normal and a few months ago I found another drug so that I can get out of bed and function through most of the day! There is actually a bill out for RMSF/Lymes called HR.1179 which would pump $100 million into research, education and prevention. Never stop fighting for your health! You can do this too. Remember that you are not alone and just take baby steps!
What were the drugs you found to help? They have decided after 2 positive tests for RMSF I have polymyalgianeuratica. I am just about crazy.I think it’s still RMSF . I am on prednisone & pain pills & no better. Email me at cherokee@mtnhome.com
My heart goes out to you. I was diagnosed with RMSF 2 years ago exactly and I have had health problems ever since which seem to be getting worse. I have finally found a naturopathic doctor I want to try next week. I hope she can help. I am desperate. I can’t remember when I felt good!! Why is it so difficult to find info on long-term effects?
http://emedicine.medscape.com/article/228042-overview , it has some info of interest . b.sargent
mgt #137 also live on the western slope,5 cases on record from the paonia lab i was told so rmsf is not rare as i see it,probably that many nore not reported. i see not all have the exact same problems but enough to make you wonder why the medical people do not write up an article. am using these e mails to study with,slow work tho. bert sargent,faith and liberty to all tick victems.
The best we could do is to report each case to CDC so they could update the stats. If the numbers are high they will have to investigate more
judy,the last visit to the veterans dr he prescribed omeprazole 20 mg ec cap and the diarrhea went away in a few days,you might ask your dr about it. as for vitamin d you can get it from the sun shine,that is if you are indoors a lot. so far the info gathered leads me to believe the rmsf ends up in the muscles . the transfer of the blood from the arteries to the veins via the capillaries swell up and restrict the flow of the blood. this causes the swelling. so far the doctors i have visited are not impressed and am not sure either. but i do know i have numbness in the lower legs , feet and swelling. also feel the nerves and blood circulation are altered. two 5 year olds were playing as doctors,one had a white coat on and the other was standing on his head on the bath room scales,the dr said that is odd your head weighs the same as your feet. good luck to you and to all with rmsf. bert, oh i used to skip a meal in the morning ,no food no diarrhea.
Bert thanks for your post and your suggestion, I think sharing info is our only hope.
I am still fighting. As of today I have elevated liver enzymes, low platelets, very low vitamin d, and I also have diarrhea after every meal. I visited with my GP today We are trying to figure out Why. Maybe medicine. It was the Gabapentin that was causing my legs to swell.
I have been waiting on UAMS to get back to me, just found out the Dr is only addressing the neuropathy. She also lost my test that were done July 8. They have found them and will be reviewing them. Will Call. Yeah right! seems all my specialist only deal with their specialty.
On the positive side I AM ABLE TO WALK BETTER, BUT MY 92 YEAR OLD MOM WEARS ME OUT.
my husband went undiagnosed for 6 months till i demanded a test for rmsf. we saw cancer and arthritis doctors in the interum who were of no help because that was not the problem. severe muscle pain with no relief, any suggestions? by the way, the doctor did not want to do the test for rmsf, told me he would test for it, but also for hepatitis and if he had it “you do to”. told him,”i am not sick” no apology once diagnosed either.
went to an infectuos disease dr in western colo who after 2 months has not sent a report,last info from his office was i needed to sign something.bully. he indicated the blood test was wrong,that rmsf has no after affects or my problems could not be caused by rmsf. sure glad he did not charge more than 17.00 per hour and visit lasted only 10 min. ask the dr you may attend for a bit of rmsf treatment he has preformed,no. of cases,ect. still no findings to pass on except to get a spray for shoes and garments from apr to oct.
Sharon again. I forgot to ask. Has anyone lost hair? Four months after the bite I am losing lots of hair. Anyone else experiencing this?
I lost hair as well. I was told from antibiotics or now they said I have celiac disease which did show slightly positive.
Hair loss probably due to thyroid being affected by RMSF. Had the same thing happen to me.
My hair stopped growing. Was bitten & diagnosed June 2009. Freaked out cause the tick was at the base of the ball cap I was wearing, had hair in a pony tail. I had fairly long hair. I was so upset about “the evil tick” that attached to my scalp and tried to kill me that I had ALL of my hair cut off. After 2 years, my hair has started to grow, however, that no longer bothers me as much as the leg pain, the total out of breath feeling trying to walk from point A to point B , the extreme fatigue to where I collapse from exhaustion. We need to band together and demand someone find some answers. This is REAL. The long term effects of RMSF and SFGR are REAL!
I’ve read with great interest all of your experiences. It all started when our Lab (dog) died (Thursday) April 6, 2010. She and I had been doing yard work a few days earlier. I started feeling ill on Saturday April 8, 2010. The next day was Mothers Day and I tried not to be near our children and grandchildren because I thought I had the flu and was contagious. The next day (Mon) I went to my Dr. and told him I must have the flu with fever and body aches. He gave me Z pac . I have no memory of it but I drove myself to another Dr. on Tuesday. Later I learn he gave me lab tests of which I had no memory. That evening my husband told me I said “I should’nt have driven to the Dr.-it was’nt safe.” At this time I told them I had a tic bite. I had saved the tic and put it on scotch tape. Can you believe I talked and drove etc and have no memory of it–WEIRD. After my symptoms worsened on Wednesday evening my husband and daughter took me to ER. They put me in ICU and IV’s of Doxycycline. They could tell I was in terrific pain and broke out with the rash and was in a coma for the next 3 weeks. The first thing I remember–my pastor was at my bedside and told me I had been bitten by a tic and had been unconscious for 3 weeks. At first when I saw him at my bedside I thought surely I have died! After 2 more weeks in the hospital, my memory was foggy, failed a test of counting back change-it made no sense to me. Had to learn to talk and walk again. Could’nt remember my computer passwords etc. After I got home, I took 4 weeks of physical therapy. It’s now Sept 24. I’m doing very well, praise God. Still a little wobbly but I am regaining my strength and hoping and praying I do not relapse like many of you have. I pray all of you have good recoveries. I live in southeast Kansas. All Drs. need to be aware of flu like symptoms in the warm months and give Doxy. before the test results come back. Timing is all important.
Oh and by the way, if you read the side effects on the doxycycline you will be surprised, muscle and joint discomfort, lower back pain, weakness, nausea and fever just to name a few. I also had ringing in my ears, sensitive to sound, night sweats, trouble sleeping, muscle weakness, trouble reading and writing and sometimes recognizing objects. All that has improved and the brain fog is gone.
I was bitten by a tick on a weekend trip to Barkley Lake State Park in April 2010. As the days passed I began feeling bad. First it felt as a wave of weirdness surge through my body. I knew something wasn’t right so made an appt with my GP for the following week. Then with the weird feeling, I began feeling dizzy with numbness and tingling in my face, hands and feet along with anxiety. On the day of my appt with my doctor I was feeling so bad,(about 3 weeks after bite) I ended up going straight to the ER. The doctor, bless her heart, listened to me and my symptoms and started me on doxycycline, 2 a day for 10 days and told me to follow up with my GP which I did. He also said that it’s more likely for me to have MS than a tick bite infection. Two days after finishing the meds I was notified that titer came back positive for “exposure” to RMSF, with also an indication of previous tick bite exposure. That explains a lot of symptoms I have been blaming on menopause for the last couple of years. At this point I was not feeling any better at all, so my doc put me on 2 1/2 more weeks of doxycycline. I had muscle/joint aches and pains, not to mention stiffness, and very very weak. The anxiety continued along with nausea, belching, loss of appetite, general brain fog as everyone else has mentioned. Needless to say I ended up back in the ER, just didn’t feel like I was getting better, gave me something for nausea and told me to hang in there, that it will take time. Several more weeks passed still feeling about same, then I began have terrible lower back and hip pain. I decided to go see a infectious dz specialist (got in 10 days later), oh and btw make sure your GP office sends them ALL your test results. Overall he told me that my body has gone through quite an ordeal and that your immune systems goes into high gear and will start attacking your body. He also said 5 days of Doxycycline is enough to kill it. He recommended that I take 2 Aleve a day for 5 days to help the inflammation. He also told me that I can’t be counted as a statistic because I never had the fever and rash (which they biopsy to confirm RMSF), darn I don’t even count. I did finally start feeling better. Now 5 months later, I’m not back 100%. I still have constant muscle/joint aches and pains with muscle stiffness. Everyday I do feel my stamina coming back and I hope that continues to get better. I do feel at times that I will never be the same, but hopefully time does heal. Thanks for all the posts, it does help knowing your not alone.
Hello, I had RMSF when I was about 8 or so. I am now 29 and have some cronic pain in my right hip join as well as regular accurring migranes. I think this is due to the RMSF. I excerice regulary riding a bike nearly every day for over an hour as well as well as weight train. The pain comes and goes from a year or so with no pain to day after day of pain. its not unbarable as I continue to excerice regardless. I had a friend whom worked for the Infectious Deiese dept. in a big Hoispotal. She had once told me that not many long term studies have been preformed on RMSf and suggested that I become a case studie. I never did but I bet it would be helpful if some of us whom have suffered from this do think about contaction our local Hoispotals abot that prospective. Thank you all for your comments. I have found them very hepfull. Thanks again
more info,not a lot on long term affects.type in ,long term affects of rmsf ,for info. also ,http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5504al.htm,has a good over view. hope this of value. use insect repellent on shoes and garments. bert sargent
My daughter was 8 last year when she got Rocky Mountain Spotted Fever. Started out with a rash on her feet which kinda looked like athlete’s foot, but didn’t itch. In the middle of the night she woke up screaming in pain. Took her to the hospital, where they were slightly confused. They had never seen a case. Had to call in a specialist. She spent 4days in the hospital with IV’s. It was horrifing.
after seeing that 6-800 people a year ,all over n/a ,have tick bites and or rmsf ,there must be that many or more ,plus the medical people that are uneducated on long term effects, that go unreported or are not aware of this and other sites. put the word out when ever possible and collect any info you can. with all that are interested perhaps we can possibly get the info to those interested in the medical fields,there are many.i plan to put in a free add in the local paper. i had asked about others with rmsf and the medico i went to said no info to be given on others. it appears rmsf ,from what i have read,that muscles may be affected most. so i will start a report on what i find. this is not medical advice,just info collected on the internet. any one may trade info i think and hope.do not wish to upset those in d.c. or the ama. they might come up with some weird solutions. bert sargent brsargent@copper.net
blood test confirmed rmsf,may09.have problems with knees getting up,knees down,numb & slight pain, spotted colored feet,itching all over body. several other problems,minor more or less. took two weeks to see an id doctor &after a 15 min exam he declared none of my problems were not,not due to rmsf. i have a feeling that he may not know all. would like to share info as i ,and anyone else that finds it, as i feel a lot is unknown on this subject and the long term problems. bert sargent,age78 , brsargent@copper.net
I came here, like many of you, because I had RMSF at 15 and still have ongoing problems at 36. I skipped school one sunny spring Thursday at the age of 15 to romp through the woods with my friends. Friday I found a lovely fat tick on my rear end. By Sunday I was covered in a funky rash and had a yellow pallor which sent my mama and I packing to the ER. At that point I felt fine, minus a low fever. By the time the nurse got me into a bed, I was vomiting. Lyme was just beginning to be talked about at the time, and so the Dr assumed this was most probable and ordered a panel. Lucky for me, I was set in the hall to wait for the nurse to take my blood outside the lab. A kind young man (dr or nurse I don’t know for sure) stopped to have a chat with my mama and gave me a once over and a giggle. I was getting a bit outta my head by now, but I remember him asking her if I had yellow fever. It was his intuition that got me started on the right path straight out of the gate. Mom says he went to my Dr and told him his suspicion, thereby altering the panel to be ran. Sure enough, i had it. I spent the better part of summer 6 weeks swallowing pills and being forced to “drink this!” only to vomit it up moments later…from dry heaves to bright green fluid. I can only assume now it was bile. Mama says I’ve never been the same. Mood swings, broken fragile bones, unreliable stomache bladder and bowels (diagnosed with gluten intolerance at 33), joint pains (diagnosed with hyperelestic joint syndrom at 20), muscle spams and pain (diag with fibromyalgia at 27), migraines and irregular periods (early onset menopause at 32) also tested positive for (rheumatoid arthritis at 29)…or is it just the long term effect of RMSF? I think so…So I am following the complementary care model for Lyme in hope to gain relief…50 billion multi strain probiotic nightly, msm powder 2.5 gm 2x daily, high DHA omega 3 2x dialy, alpha lipoic acid 600mg 2x daily…maybe we all should try this??? After 2 months I am noticing less pain in my joints, a little less foggy brained and i am sleeping better…I hope this works.
It is amazing that so many people have the same stories. I went to two ID doctors. One told me that the rickettsial bacteria is not well understood, and that sometimes the treatmetns that are given like one two week dose here and another two week dose there never fully eliminates the bacteria. She suggested I stay ona 30=day dose of Doxy. I tried taking doxy orally but it seemed to be making me sick to my stomach. I am wondering if I should push to get a pick line in to avoid some of the stomach issues to finally get the RMSF out of my system. I’m sure like all of you in the early stages you don’t want to have this following you all your life. I would encourage you to find a homeopathic doctor to prescribe different remedies following the antibiotic treatment, because it truly helps and I have found to be the only answer besides antibiotics. Above all stay strong and pray to the Lord to keep you on your path to fulfill your purpose in life.
My son had lymes disease 17 years ago, and i sick again with most of the same symptoms, no blood work reveals anything wrong, he is now 33 with wife and beautiful baby girl. He is on tetracycline again as he was 17 years ago, doing better but has lost in 21 days 16 lbs. is this normal. He is a strong man, we need answers, doctors need to get informed. We can put men on the moon but doctors cannot find a blood test that confirms Lyme’s. What is going on. Help in Muenster, Tx. A Mom that went through hell and back with doctors 17 years ago, and i refuse to go there again. God bless!! CAN SOMEONE HELP!! cklement@muensterisd.net
Was diagnosed with RMSF in nov. 2007. My symptoms were memory loss, headaches, joint and muscle pain, numbness in my face, depression, inability to move from a chair all day. I had been bitten by a tick in May 2007 and didn’t put 2 and 2 together. I live in a highly tick-infested area in the NE and many residents have been sick with tick born illnesses. Took me 3 doctors and a couple of months to find the one who would treat me aggressively with doxy – was on it for 5 months. Took me about 10 months to feel better physically and mentally. Last year was hit with major depression and anxiety and now am on meds for that and in therapy. May of this year was feeling really sick again and blood test came back positive for RMSF again. Took amoxycillan for 2 months (doxy makes you sun-sensitive). Finished that course of antibiotics 2 weeks ago. Woke up 2 nights ago shivering, body aches, joint pain, headaches, vomiting, could not move out of bed to put on an extra quilt on the bed. Saw my doc again yesterday, he said yes, its definitely RMSF again, so I’m back on antibiotics again indefinitely, taking it month by month. So, to those of you asking if its possible to harbor the illness for years, I say yes, as does my doc. I can not imagine that I will live the rest of my life like this. I’m 45 and was planning on returning to college this year. My life in put on hold, I’m not the mother I would like to be to my kids and my husband has to put up with a sick wife all the time. To all of you out there suffering good luck, you’re not alone, I pray for you.
My story with RMSF is quite dramatic, but I am fortunate to have been treated early. It is hard to say a Pulmonary Embolism might have saved my life, but perhaps it did. I am a 28 year old female with a blood clotting disorder called Factor V Leiden. I went to the ER with severe chest pain and difficulty breathing. I also had a fever of 104 and severe headaches (and I mean terrible headaches where I couldn’t open my eyes). The ER staff dragged their feet assuming I had anxiety and a virus. Finally, after hours, they did a CT of my chest and found the clot. At this point they admitted me to ICU and tried to figure out the source of my high fever and headaches that morphine wouldn’t even touch. I also was delusional and hallucinating things and conversations that weren’t happening. Every doctor under the sun came to see me and performed test after test after test. It was assumed I had meningitis and was started on doxi immediately thank God. They discovered my Gallbladder was severely infected which was strange since I had no stones in it. They immediately removed my Gallbladder and I am now wondering if that was a side effect from RMSF. After fever was gone and white blood counts that were at zero were normal I was released. A few days later my labs came back and infectious disease doctor informed me I had RMSF. I do recall a pus filled bite on my leg about a week before I got sick and it came up after doing yard work. I wonder it that was the tick and I brushed it off in the shower and left the head in.
It has now been 2 weeks since all this and I am SO extremely tired all the time. I know I had a lot done to me, but I can’t even walk across my house without getting short of breath. I exercised 3x a week and lifted weights before this and was in good health. Now I have no energy…I yawn all day…i get winded…I can’t focus on conversations or what is going on around me. I am hoping this goes away since I have 3 kids ages 5 and under and I need my energy. I wish there was more info since every doctor blames my fatigue on my lengthy hospital stay. Let’s hope that is the case…
Hi Folks! Found this forum while searching for long term effects of RMSF. I had the disease when I was about five years old and am now fifty-one years old. I have been tested negative for almost every kind of immuno-suppressive disease there is, but have many symptoms associated with these conditions. I have one tentative diagnosis of Fibromyalgia, which I disagree with. When I was sixteen, I was in a very minor fender-bender which resulted in a 3-inch tear in my spleen (which had to be removed)- coincidence? For about ten years now, I have had an elevated white cell count with no apparent source. I have blood in my urine every time it is tested, for no apparent reason. I have a “spot” on one of my lungs which has been mistaken for Tuberculosis more than once. My body temperature ranges from 97.6 to 99.6- it is never 98.6 (doesn’t seem like much but causes me to be either too hot or too cold all the time). I do not take any kind of medication that may cause thinning of my blood, but bleed and bruise profusely when injured. Then there are the symptoms that come-and-go! I have severe migraines that result in several hours of nausea and vomiting. I have bouts of indigestion, nausea, diarrhea, and bleeding from the rectum. I have bouts of joint pain and swelling, never the same joint. After reading some of these blogs, I am starting to wonder about the RMSF. I cannot find any doctors to substantiate because there have been no studies. All you guys who are still being treated need to present these concerns to your doctors so studies can be done, unless you want to end up forty-five years down the road with a butt-load of unanswered questions!
I was bitten by a tick on Labor Day, 2009. I was unemployed and going to school online full time. I have always had stomach problems, so when they increased I just thought it was a reaction to stress from my schoolwork. Then I started sleeping more. I’d sleep all night (which was strange for me) and then after I got my husband off to work, I would have to sleep some more. I never had a rash, and there was one night (ONLY one night) when I had a fever of 101. I ran little fevers of 99 or so in the evenings, but a doctor told me that if it was below 100, it wasn’t a fever (Liar!). My husband was worried about me, so he told me to go to the doctor and get tested for Mono. I had told him that I thought I had Mono in high school but was never checked for it.
I went to the doctor and she had them do the tests. I mentioned that I had been bitten by ticks on Labor day, so she also ordered a tick titer to see if I had Lyme disease.
Two days later, she confirmed that I did have Mono. Bed rest and liquids, and she wasn’t worried about Lyme. So I went my merry way to recuperate. Two weeks later, I called to find out about the Lyme results. The nurse told me that they had come back a couple of days earlier, and it showed that I had had Rocky Mountain Spotted Fever sometime within the last thirty days, but it was in remission now. I knew nothing about RMSF at that time, so I took her on her word. Nothing was ever said to me about treatment, or if I should watch for it to come back. It’s been almost a year now, and I have suffered major bouts of depression, memory problems, problems with the joints in my hands, loss of energy, and most recently, my stomach problems have increased again. At this time, I have no health insurance with which to see a doctor about getting a blood test for RMSF to see if it is out of remission. No rash, no (high) fevers, no one wants to take me seriously. Well, I didn’t have those with the initial infection either. And I’m spiraling downward fast, emotionally and physically. Does anyone know if it will come back if it wasn’t treated? I’ve read posts that say it can come back randomly, but has anyone had a doctor tell them this?
Thank you.
I was diagnosed with RMSF June 2005 and am having all the problems that everyone is talking about. Has anyone been able to get on disabilty from RMSF. It seems the older I get the worse I am getting.I do not know how much longer I can hold out to work. Please let me know if You have any Information.
Thanks
I so feel your pain.I was diagnosed with RMSF September 2010, the same month I got married. I walked down the ilse with a bleeding ulcer because the doctors said I had mono. I took the doxycycline for a whole month.I am still having problems gaining weight and just feeling healthy. I have a 8 year old son and I cant seem to function some days. Being in a new marriage of course we want to have more children.I am so afraid this disease has made me sterile.I just need someone to tell me what to do to get better and I will. I am so heartbroken and just beaten down with my day to day.Will I ever be able to function again.I just want my life back.Please help if anyone knows how.
I was bitten by a tick in April, 09. I pulled the tick of my neck and waited to see if I had any symptoms. About 5-7 days later I began to get a sore throat, and feel like I had the flu. I only ran a low grade temp of about 99. I started having headaches, terrible muscle and joint pain. The doctor started me on doxy right away, but I had a reaction to it and had to stop it. He then gave me amox, but I wasn’t able to take that either. The third med they gave me was a z-pac and it helped a little, but around June I started having the horrible leg pains, joint aches and a bad headache again. I went to a walk in clinic that tested me again for RMSf and the test finally showed I had the disease. I was treated again for it by by primary care physician with z-pac. He said he thought that since I wasn’t able to complete the first two rounds of antibiotics that there may be some bacteria still in my system. He told me that we were just going to have to take it slow , and that I may have to be treated again. Since then, I have horrible stiffness, joint pain, and muscle aches. I am better than I was, but I’m afraid that this disease has left me
with some what of a disability. I wake every morning with he feeling of arthritis all over my body. I still take anti-inflammatory meds. I bought another house that had a jacuzzi and it helps, especially on mornings when symptoms are the worse. There needs to be a better test for this disease. Thankfully, my doctors didn’t go by there test results the first time, and went ahead a treated me.
My husband was diagnosed with RMSF about a year ago. He took the doxy, felt better. A couple of weeks later high fever chills started again, so they put him on another round of doxy and he felt better.
Since then he has had high fever and chills that last about 24 hours, way too many times to be the flu. Sometimes it is weeks between these mystery fevers and sometimes it is just days. Is it possible that he still has RMSF?
I found a tick on my back last fall. I went to the dotor with the tick and was given medicine. I took it for two days and stopped as I was severly ill and thought it was the medicine. I went back to the doctor. She sent me to the hospital for 4 days. I am supposed to be all better, but! Where did this lack of word recall come from. Why are my legs and feet so swollen?, I had to buy shoes a whole size larger. I have trouble sleeping because of night sweats and joint pain. I got new glasses six months ago and need a magnifying glass to do my crossword puzzles. My hearing is not the same either. When I walk, blood vessels on the top of my left foot break.
As I am 69 years old and as I have diabetes and arthitis, my doctor is perplexed. Two years ago I took no medication at all and now I am on nine pills a day. Actually with the recently diagnosed H-Pilori stomach infection, I am taking sixteen pills a day. I have always been active and athletic. I retired from a job running a housing unit in a man’s Level III prison two years ago.
I feel blessed to have found this web-site. I don’t feel so alone. I know I am not the woman I used to be. The joint pain and foot problems are horrible. I will get in touch with CDC and request more information be found on the long term effects of RMSF. I did E-mail The DRS T.V. show today and asked them to do a show concerning this. Good luck to all!
I was just diagnosed with RMSV after having a tick pulled off my ankle two weeks ago. The diagnosis was made today after going for blood work yesterday. I discussed my symptoms with a coworker who said they had RMSV for the past six weeks and were just put on doxy two days ago. They said, “those are the symptoms I had”. Sure enough I looked it up. The symptoms I had included: SEVERE headaches, partial paralysis (or, couldn’t get up because I was shaking so bad), 102 fever for three hours that went up and down for two days, general fatigue and malaise, cold sweats, teeth chattering and body shaking. After thinking that this “could be RMSF” I called my MD who was nice and caring enough to meet me at her office. She noticed I had petechiae on my ankles and hands with her loupes and slight fever. She put me on doxy immediately and sent me to hospital for a CBC, IgA and IgM titer check for RMSF. I feel fine now other than severe headaches but have just started my doxy. I’m most worried about the longterm effects, if any. I am outdoors a lot mostly deer hunting and fishing. I didn’t wear long sleeves or pants or DEET spray which I would recommend to others.
Hello all. Great site, glad I found it. I was bitten by a tick at a State Park here in Florida. I discovered the tick the next day and removed it. A few days later, I started having headaches, muscle aches, and joint aches. By day five (5) my lower back felt like it was on fire. I went to the doctor and his knee-jerk reaction was to treat me for Lyme Disease, so he put me on a course of antibiotics (Ceftine). I finished the course, but still felt like crap. Went back to the doctor who then orders a complete blood panel. It came back positive for RMSF. He put me on Doxycycline right away – 100mg, 2xdaily, for 10 days. Overall, I feel better. It’s been about 6 weeks since the tick bite and I’ve been off the Doxy. now for about a week. Generally, I feel better – but still have some mild aches and pains. My doctor tells me that this is normal and that my body is still reacting to the immune response. He says that I should experience complete recovery after a month. I can live with the aches and pains, just as long as I know I’m not going to fall over dead. I had followup CBC and Liver Function – both completely normal.
Just FYI: I never had a fever or spots/rash: just a lot of aches, pains, and general malaise – oh, and headaches! So, if you’ve been in the woods and feel like crap afterwards, go see the doctor.
God Bless to All…
Good Morning! Bad week, Ochner in New Orleans canceled, because the Doctor is in the Hospital. When I got that news, my stress level escalated. I had the worst freakiest headache I have ever had.
However later that day I got a letter from UAMS. I finally have an appointment, after they have reviewed the records for about 6 mo.
Getting some better slowly Little things like finally being able to cut the fingernails on my right hand. Lost that later that evening. however any change is good.
I was able to stem the itchy rash by using the Homeopathic remedy APIS MELLIFICA 30 c. The dermatologist had me stop taking Advil and see him in 3-4 weeks. How many weeks would it take to discover the cause of this drug related rash at that rate. Am I being cynical. YES.
I will continue to post, I am trying to get info from a friend whose husband had Lyme disease.He thought he was dying. He was treated by a Doctor in Kansas. He is now doing great. The doctor he saw at a clinc is now an ER doctor. Hope we can get this info.
Don’t give up. Take it one day at a time and Pray for all of us. Thanks Judi
I discovered a tick on my neck, then about 12 days later had enlaged lymph nodes on my neck. Saw m.d. who said come back if I started to feel bad or developed rash or fever. Two days later I had chills, and general yuck feeling. Returned to doc and was started on doxycycline and had blood work done. Preliminary test show RMSF. I am feeling better, but find that I am exhausted every evening and sometimes the exhaustion is accompanied by chills. Doc seems to think I will be fine in another week or so. I am trying to find out what long term effects are. I was treated fairly early, but am frustrated by lack of info.
I live on the Western Slope in Co. and have been told rmsf is rare here.
Just a note ; if you have an underlying condition that may not have symptoms yet or has gone undiagnosised, rmsf and/or doxycycline (all cycline class drugs) can cause it to emerge or worsen. I got rmsf in summer 08 and had all symptoms except for the rash. Diagnosis was made in October 08 from the blood tests. My acute lvls took over 6 mnths to go down. But it made my underlying neuro problems (which were previously undiagnosised) way worse.
I have had 4 brain surgeries since October 2009.
I have been told I ‘probably’ have chronic fatigue ( whoa nice lymphnodes….. ) I used to be very bright. I graduated salutarian. Now my memory and thinking is nearly gone. All of this before I turn 21.
The nuerosurgery has helped.
I think a lot of cases are not reported.
Anyway I thought it was interesting that so many ppl have shared on here
Hi everyone. My GP has referred me to Ochner Clinic in New Orleans. I go in June. I still have my Rash. (It really itches). Feet are still not working good. Left hand two finger are still numb. Right now due to rash I am spending more time inside out of heat and sun. Thank goodness for my dear Friend Anthony. Have a great day
Hi! I am still fighting. I went to a homeopath in Little Rock. I have tried about 5 remedies including a low dose of sulphur, so far nothing is helping.
I went to the ER yesterday, for an itchy rash on both legs. I was prescribed a cream and told to see my GP Friday. The rash makes it very hard to wear my leg braces.
I am back to numbness in my left hand again. “What do I have” The Infectious disease Dr says not RMSF. I am still waiting for an appointment with the Neuro at Uams.
I also have a loss of vision in my right eye. Dr say beginning of glaucoma??? Where do we get help?
My RMSF labs came back negative recently, but doctor found lots of deficiencies in my body. I would like to compare notes with others: low, low Vitamin D, low B12, low white blood count, candidiasis throughout my body, low iodine, low fatty acids, new food allergies. In addition I have all the mental, physical, emotional issues everyone here has described. I was bitten by a tick a little over a year and a half ago—I didn’t seek medical care until over 2 months after the bite when I woke up one morning and felt like I was dying and continued to die for months with no answers. I did have a short course of antibiotics for my mystery rash that may have stifled the infection enabling me to go through the motions of living for a year and a half. I began to suspect tick related disease through my own research once my husband reminded me of the tick bite. Anyone interested in seeing my blog is welcome- I don’t know for sure what exactly ails me, but I’d put my money on RMSF.
See my personal blog http://tickedbutnotlicked.blogspot.com/
Im so happy to find this I had RMSf when I was 7years old in south carolina I was one of the statistics who lived .to day Im 47 and Im in so much pain every day trying to find an answer why? the dr keep saying I Have Fibromyalgia I feel like this is from my ilness when I was four is any one else being told that they have fibromyalgia?
oh my gosh . this so sad i’ve read about three or more stories and man i can’t stand it. i can’t believe all you people had to go threw seeing your loved ones getting so ill like that :( aww. break my heart. God Bless you all.
I am not posting for me, but for a pharmacist who purchased my retail practice in 2006. She was diagnosed with RMSF around 2 years ago. No one knows how long after the initial bite that she presented with a large enraged sore in an “out of the way” area on her body. The physician whom she showed the area to was concerned about a possible staph infection, and put her on Doxycycline for 10 days. We realized after her following blood work and positive rickettsial toxin levels came back, that she was a lucky lady that he started the Doxycycline therapy on her. She progressed through all of the soon after detection symptoms and more mentioned on this post even after her treatment.
This woman had never missed one day from work due to any illness and a very intelligent person as well. Ever since her initial phases of illness, she has not had a single month that she was free from some new physical or neurological manifestations. I don’t have the space here to type all of the problems she has had, but let it be said that her life as she knew it has been hell ever since. The posts I have read on this site are a gold mine of information I have been looking for during the past 18 months. She has gone through every post stage illnesses mentioned plus some that haven’t. She went to Mayo Brother’s around 5 months ago, looking for anything that all the others may have missed. Their find was that her Vitamin D levels to be nearly nil, and she started replacement therapy, hoping for the big cure! They assured her that she would feel like a teenager again after several months when her levels came up to normal. She thought it was helping, but no such luck. At this time, she is in a professional rehab center, where she was sent to at the insistence of her family for a possible recovery from opiate pain medication mismanagement “even though she tested negatively for opiates after a recent drug test.” She now has to wear a patch over one eye to be able to see one image, as she has severe vertical and horizontal esotropia in both eyes with an 18 diopter correction needed. I think 11 is as far as correction goes! She as suffered from seizures, and skeletal disorders to the extent that one of her jaw sockets deteriorated and the bottom jaw bone would just fall out of the upper one! I sincerely believe that she has been attacked by the one of the worst neurological toxins that there is on this earth. I appreciate all I have read on this site, and I also hope that the CDC and all other national health organizations get a whiff of this site and start pouring intense investigation into this horrible disease. Thank You all for your input and keep praying for help for these people.
Jim I read your post, how is your friend doing? I found this site by researching rmfs chats, my wife was diagnosed with it 4 weeks after the tick bite, she has been on two other antibiotics before they realized what it really was. when they found out what it was they put her on doxy she has been taking it for about 6 days now and has been feeling awful with severe headaches, body aches, stomach pains and major fatigue.
I was diagnosed over a year ago with RMSF. It appeared that I contracted it in May of 08; was told I was going through menopause…had arthritis, etc. But with fevers, chills, memory problems, etc. I knew something was wrong. Finally in January 09, I was properly diagnosed. After a month of antibiotics, I felt so much better. But since then, I have had bilateral joint pain that “flares” up, even with good exercise and eating habits. Neck pain is a constant issue, and slurring or forgetting simple words. I have made an appt with the rheumatologist to talk about long term effects. I am 49 and feel 79 at times, even though I take great care of myself. This blog made me feel less isolated…thanks so much.
thats exactly what my sons feet looked like. Turned out to be an allergy to penicillin
I am 18 years old and was diagnosed with RMSF in august 09. I was but by a tick on a 24 hour trip to tennessee. I was misdiagnosed at first, went back to the doctor the next day and they figured out what I had. It was the most horrible experience of my life.
I have RMSF again. Right now. Same symptoms – fever, body aches, rash covering my body.I went to the doctor this morning and got on antibiotics.I live in florida and to my knowledge have not come into any contact with a tick.. I’ve googled chronic rocky mountain spotted fever and apparently no relapses of the actual disease have been reported to CDC. I would rather die than get RMSF twice a year for the rest of my life. I need help.
I had Rocky Mountain Spotted Fever in June of 1993. Just got back from camping with my friend Memorial Day weekend. The following weekend, I was asked by my best friend if I wanted to go for a boat ride with his family. I walked down to his house the morning of the trip. No sooner as I knocked on his door I started getting a really bad headache waiting to go. I went on the boat ride and I look like I was drunk. (I was 13 years old at the time) We got home and I immediately layed down on the couch. I didn’t move from th couch for a week. Having temp. ranging in the 102 to 104 area. My parents alternating going to work and caring for me. After about 4 days of it going on, my mom and my sister took me to the ER near home. Nurse came in drew blood. As soon as the nurse left the room, i exploded in red spots from head to toe. The nurse had no idea what the spots are and DISCHARGED me. The next morning I can honestly say I felt brain-dead with a 105.7 temp. That was enough for my parents to take me to Children’s Hospital in Philadelphia. Waited after drawing blood and hospital room. The doctor came in 5 to 6 hours later and confirmed that i had came down with RMSF. The doctor came straight out after saying that stating if i was not there from a few hours to up to a week later, I would have died. I was in the hospital for 5 days and then discharged after my fever was down. Had anti-biotics scripts.
I walked into school on the last day before summer recess, stood in front of my math teacher, and said “Hi.” She touched my face as if I was a ghost. She then gave me a big hug and cried alittle. I whispered to her, “I’m here. Here is my schoolbook.” She replied, “Forget the schoolbook I was sooooo worried about you.” She helped me to my homeroom classroom, which was next door and everyone, i do mean everyone went silent. Then after a few seconds of silence, the room erupted in appluse. Few minutes later my other 2 teachers came to see me and gave me big hugs and teary-eyed. I went to the office, turn in my books and left after an hour and a half to begin my summer break.
It has been 17 years since and I have been diginosed with panic/anxiety disorder, plus learning disorders. I have had my right thumb be locked in place once in a while. I have to message it loose. My left side is really weak now. I am putting my money on its all related to RMSF. I do get headaches often, sometimes severe enough to lay down all day once in a while.
Kathy from Missouri I would love to talk to you. could you email me @ judifox22@yahoo.com
Judi,
Did you have any luck with the doctor in Springfield? I live in Tulsa and I have RMSF which I contracted in June of 2013. The doctors are looking at me like I’m crazy when I tell them that the symptoms will no go away no matter how many times I take antibiotics. I have been searching for someone who specializes in this field so I might finally get some answers.
I would appreciate any Help.
Kathy, Aug 30 09, suggested a Doctor in Springfield, I plan on giving him a call in the morning.
I will post the results. IN the meantime you will all be in my prayers.
I have taken 4 – 2 week doses of Doxy. When I first started taking it, I got better. Then it quit helping. I am going crazy and don’t know what to do next.
I wear Braces on both legs to help me walk, I also use a cane for balance. I do not have any stamina. I have swelling and a rash in both feet. My feet and legs get very cold. At one time, I was losing feeling in my hands. That got better on Doxy, but is going downhill again. I am not able to cut my fingernails or open bottles with my left hand. Every time I think I am better, I get worse again. I have a notebook and ask for copies of all my test, which have been many. I am finding that you have to be your own advocate.
My DR and I decided I should check into the hospital for addl. testing. He called the Neurologist on call to let him know I was coming. The Neuro came in to see me that night and did some preliminary testing. He ordered lab. The next morning he came in to tell me I had high triglycerides and he was having a rheumatologist see me. After he saw me, I was sent home about 8 PM ?? . I was home 30 min. before i started having Vomiting and Diahrea. Went back to the Hospital the next day, They had made me sick.
When I told my doctor what the Neuro said, he couldn’t believe it. He got me an appointment with another Neurologist. Who ran lots of test including Lyme and Rmsf. I tested high positive for rmsf.
My story is very similar to others. I had a couple of falls this summer and thought I had injured my back. My DR. sent me for an MRI, an EMG, and a nerve conduction study. Minor problems were found, but nothing to indicate why I was having trouble walking and hurt all over. It hurt for my legs to touch each other, and I could not sleep at night. I would lie awake sobbing.
The Neurologist, who did the EMG, Indicated that further testing would be needed to determine what was wrong. An appointment was made with her, for the end of October. This is at the end of September and I am getting worse all the time.
My DR got me in to see an Ortho surgeon, who sent me for additional MRIs. Again nothing was found to explain my problems.
I had RMSF in 1974 at the age of 9..At that time there were only 15 case in the state of Maryland with mine being the first diagnosed. I lost 7 fingers and almost my arms to the gangrene all of the typical symptoms and fever of 106 and came real close to dying.. I am now 45 and like many others on this site have had symptoms for years but never linked them to RMSF. I have hypothyroidism, (Dr’s say my thyroid is just shriveled up to nothing), I have migraines which are now mostly controlled with medication, cervical (disc surgery) and back problems, had my gallbladder removed in 2009, nightsweats, sleep problems and terrible memory loss and lack of concentration (I always associated with my thyroid but wonder now if it is from RMSF.) now I am having trouble with my pancreas. Still have to go back to Dr in a few weeks to find out about enlarged or swollen pancreas ( had a problem with what they think was pancreatitis a few weeks ago. Has anybody else has problems with their pancreas?
My son was diagnosed with RMSF in 2005. He had the highest count possible when they did the blood test. Luckily my stepmother knew of a specialty doctor here in Vancouver B.C. (The doctor himself had lyme disease and then changed his profession to specialize in bacterial diseases) We took our son to be treated and was on a very low dosage of medicine to slowly kill off the bad bacteria in him. After a few years, I’m happy to announce that those extremely high numbers he had is now next to nill. Regular doctors had no idea what was wrong with our son and said he just has a flu and really bad growing pains (as it all happened at night time.)
Before my son became ill I learned that he is very chemically sensitive and can not even handle the regular dosage for a child his age. If I had taken my son to be treated by the regular medical system that gives out an extremely high dosage to treat the disease, that would of been fatal to him.
Not all RMSF patients have the same symptoms, and yet most people have NOOOO idea they even have it until later in life when they have multiple health problems. Because my son was diagnosed, I had the whole family tested just to be sure even though we displayed NO symptoms. My daughter and I were fine but my husband was tested positive for it. His case was a mild one but if I had not insisted we all get tested, he would of had multiple health problems years later.
You can’t go by the pictures that are shown as the rash has different characteristics. My son’s rash looks like NONE of the pictures that I’ve researched on the internet or the one above. His started out on his arm with really small red spots then disappeared and then reappear elsewhere on his body. As each day passed the red ‘dots’ became bigger and bigger with each day passed. By the 5th night, those ‘dots’ were the seriously half the size of his arm. They alll joined together to make a enourmous red blotch. He had it all over his back, face and legs, but never his feet.
The only time he broke out in a rash was when his temperature was elevated (fever) or when he was just getting too hot from running around. He would get really itchy and want to scratch where he broke out. When his temperature returned to normal the rash would be completely gone. This all happened really late at night while my husband worked night shifts so he thought ‘I’ was being a paranoid mother. (oh that made me mad!) I finally took pictures the 5th night when it was most severe and then he realized that no…those are definately not hives! (I needed proof for the doctor too seeing how they disappeared when his temperature was normal)
If you think you or your child may have it, take pictures of the rash. Get everyone in your immediate family tested just in case. Although my doctor said that getting everyone tested was NOT neccesary, I insisted and that probably saved my husbands health.
Lyme disease and rocky mountain spotted fever is also here in Canada. I live in Burnaby, British Columbia and there have been many diagnosed cases of both diseases here in the lower mainland. A large majority of doctors here are not aware of the symptoms and its scary knowing that so many people are going to be misdiagnosed. I am very fortunate that someone I know, knew of Dr. Blaney. Without him, my sons life would of had a very different path.
Nice photos! I had RMSF when I was about 8 years old. Don’t remember the worst of it (children usually die from what I understand if they get it), but I remember swelling up like the Goodyear Blimp, spots everywhere, being given the ENTIRELY wrong medicine for a week and a half (you test positive for strept throat if you have RMSF), being hot as HELL, the intense headaches, and that when I was in the ICU and almost done blacking out (which lasted about three days from what I can surmise), all my doctors were giant bunnies in lab coats (I believe I MAY have been hallucinating, but can’t be sure. I’m not going to talk smack about doctor bunnies).
My feet looked just about the same only more swollen. I don’t remember all the skin coming off my feet, but I can’t be sure.
I know that I developed terrible migraines after the disease and no one believed me that my head hurt so much until I was in my late teens and saw a neurologist. Getting it so young is a blessing and a curse. Because so few people get it (especially as children) and live to tell about it, they just claim that there’s no long-term side affects, but I’m not convinced. I have a ton of allergies, developed symptomatic gallstones at the age of 21, and have a handful of other smaller issues with my body that no one else in my family suffers from.
I wonder if you have noticed any major changes in your health since being sick.
I am 48 years old and it has been almost 8 years since I was diagnosed with RMSF. The experience was horrible and I will never forget it. I truly thought I was going to die. Recently I have been having some problems with pain in almost all of my muscles and joints and I’m wondering if this could be a long term effect.
arthritis pain releif…
If you can’t work because of your Arthritis you may be eligible for Disability….
I began thinking i had a kidney stone with blood in my urine and having a hard time peeing! My neck was getting stiff and my bones were aching but enough i kept my live style the same as every day and ignored it. New years eve i came down with a sever migrane headache that was so bad i couldnt drive, we came home from a long day and i hicked a fever of 103.4 and could not break it. The fever finally broke two days later on sat. evening, i got myself together and went to get a shower when i noticed my legs had a rash all over them and the inside of my arms were covered with a red blotchy rash, it looked more like it was under my skin. I developed extreme pain in my legs to where the selled up so bad i couldn’t walk. After going to the emergency room on monday with purple feet they gave me blood test told me i could have lymes disease and sent me home. My feet were PURPLE legs were SWOLLEN and RASH all over legs and arms!!!! Blood level was very high but platelet level was very low! SENT ME HOME!! The pain got worse the rash got worse and my doctor ran more blood test to find nothing wrong with me!! SOmeone brought the RMSF to my attention and were waiting for the results to come back, I am feeling a bit better but this website has opened my eyes to alot of the pain i am still feeling and the sysptoms are all the same. I will be back to let you know if im positve for rmsf but scared that i would not like the long term side effects of this disease!!!
I am so glad that I found this site. I was doing a search on the after affects of RMSF….and bingo! I was diagnosed with RMSF in November after a lot of scary tests trying to figure out what was wrong with me. It was a relief to at least know. My Dr. was totally surprised when my tests came back as positive for RMSF! This is South Dakota…..well below zero, and here is a patient with RMSF!
I have been on Doxyclycline, and it is helping, I have about 5 days left to take it. I no longer have the fevers, or the incredible exhaustion, but I have muscle and joint pain. I am a runner, and have not been able to run at all. I tried a couple of times, but wow, I felt like I was going to die! I want to know how long these residual problems go on, and what I can do to get my life back!!
I’m not trying to complain! I am happy to feel better….but
Oh, coincidentally, I’m also from Missouri, the southeast corner
I’m in the hospital right now, waiting for my blood test to come back(which of course takes days). I’ve had the headaches, joint pain, fever, shortness of breath, night sweats for awhile, but the rash just developed 2 days ago. I’m in isolation while they wait to see if I have measles(already had), syphilis, (as if), scabies, H1N1, or RMSF, but they are giving me doxy and steroids….wish me luck!
Blood test results in, all is within normal range. Still feeling great!
Hi Kathy,
No I did not receive it.
novakidseatfree@gmail.com
Thanks,
Tina
Hi Tina,
I sent you an email but received errors, if you got it, please email me back. If not let me know, I will try again.
Kathy
Hi Kathy,
Thanks for your posts. They are very informative. I would love the chance to speak with you. I’ve had RMSF for the past 2 years and just finished 2 months of Doxy. I feel no improvement at all. Please email me at novakidseatfree at gmail.com
Thanks,
T
Another update, I wrote back to the CDC below are the questions I asked and response;
Q
When there is an upsurge in protective titers, will that bring on the symptoms again?
Also are there any long-term effects from this diseasse even after treatment?
A
No, in general, you will not be reinfected (i.e. new symptoms). There can be some long-term effects after the initial infection if it was very severe. Neurologic deficits, skin necrosis, etc. However, these are due to the initial infection’s damage to the body, not continued presence of the organism. Most routine infections recover normally after a period of a few weeks to months.
We have no scientific evidence that Rocky Mountain spotted fever could be associated with a chronic infection.
I wrote to the CDC and asked about test results, here is the reply:
Kathy, thank you for your inquiry to CDC. In some inviduals, the immune
response that follows RMSF infection may result in detectable antibodies
for years after infection, or even a lifetime. In other inviduals, the
antibody levels may drop to levels below our limit of detection. There
is some sense, however, that following an initial infection individuals
are unlikely to become reinfected, and may experience an upsurge in
protective titers following new exposures.
I hope this is helpful, thanks.
Jennifer McQuiston, DVM, MS, DACVPM
Epidemiology Team Lead | Rickettsial Zoonoses Branch | National Center
for Zoonotic Vectorborne and Enteric Diseases | Centers for Disease
Control and Prevention |fzh7@cdc.gov | fax: (404) 639-2778
I have suffered with this for many years, and have gone thru the MS, Lupus and every other test you can think of with no diagnosis or results.
I urge you all to try contacting a Classical Homeopathy Doctor.
I cannot take Tetracylines or doxycyline due to sever allergic reactions.
This was my first experince with homeopathy.
After 4 weeks of treatment I had my blood retested, my RMSF went down from 1:128 to 1:64 (anything less than 1:64 is considered negative) my glucose went down from 128 to 87 (within range) I too had the headaches, nausea, excrutiating pain, etc… that all went away after my first 4 week treatment. I felt great, had energy, and all symptoms disappeared, including other problems that I had. About 2 weeks after my first treatment ended, I did start experiencing some pain, but not nearly as severe as it was.
I called the homeopathist and he put me on treatment for another two weeks. I have just completed that treatment and no more pain or any other symptoms. I am going to go for another blood test this week, as on my 2nd test, the doctor neglected to do another CBB so I couldn’t check platalet count, liver enzymes, or other things that were out of range. But I am curious to see if the RMSF goes down anymore.
I will let you know next blood test results when I get them.
Check out website http://www.homeopathyyes.com
There are several cases of results from different patients that have been helped tremendously.
Good luck, I will be praying for you all, as I know how painful and disruptive to ones life that this disease can be.
I was recently diagnosed with rocky mountain spotted fever 09/18/09 . I did not have the common reaction to a tick bite. In fact i never saw the tick and had no rash. It was about a month from my symptoms starting 08/06/09 before I started antibiotic 09/03/09. I had to be hospitalized (09/03/09) since no one could figure out what I had and at this point I already dropped 13 pounds. The doctors kept telling me that it was a bad viral infection. I had several ER visits because the symptoms did not get better. All the tests were coming back negative. I am glad the infectious disease doctor listened to what I told her. A couple of days before the symptoms started I was cutting the grass in my back yard and I had lots of mosquito/fly bite. She decided to check for RMSF based on my story and started me on emperic treatment of zosyn, avancomyin and doxycyline. The results came back positive 09/18/09. The fever and chills are now gone but I am not the same. I have persistent nausea, stomach upset and weakness. I want to know if anyone has gotten over this hump yet? Thank you for all your stories, it helps knowing we are not alone.
I was diagnosed with RMSF on August 21,2009. I had never even heard of this disease. After the first test came back, I took the results to an Internal Meds doctor and he said ” No, you don’t have RMSF!” So, I then decided to see a 3rd doctor because I was concerned. He retested me after having taking doxy, my test came back even higher. It has been extremely frustrating, because I can’t get 2 out of the 5 doctors I’ve seen to say the same thing, everyone has said something different. Please help! I just want to know for sure if I am positive for RMSF.
hi jennifer!! my name is pamela.. i also got botten by a tick when i lived in alabama and was + for RMSF. IF U WOULD LIKE TO TALK TO ME ABOUT THIS U CAN E-MAIL ME AT: card_queen420@yahoo.com or call my cell @ 423-320-4712.. just wanted to see how u r doing now!! i have severe joint pain.. happened to me 5 yrs ago in bridgeport!!
Hello,
Just thought I would post my experience with RMSF because this board has helped me feel less crazy about my situation and experience with RMSF.
I was diagnosed with RMSF about 3 weeks ago after 8-9 weeks of thinking I was a hypochondriac. I just moved to a new city 5 hours from family and started teaching at an inner-city school (first year teacher). A few weeks before school, i had what doctors told me was an upper respiratory infection. I soon began having killer headaches, photosensitivity, deep muscle and joint pain, chest pain and muscle spasms over my entire body. I seriously thought I was going to die in my sleep, but all blood work was coming back normal.
I finally went to the ER for abdominal pain that was excruciating. Went through CT scans, STD and pregnancy testing (neither possible), MRIs, tons of bloodwork for things like Lupus, neurologist who said Lyme was impossible, etc.
Luckily, my mom pushed for me to go back to my GP and insist on a test for Lyme disease and he ran for RMSF which came back positive (9 weeks after initial doctor visit)
I too never had a rash, low platelet count, or fever.
After being told by the neurologist I had fibromyalgia i did NOT accept this because it is supposedto be a diagnosis of exclusion (no diagnostic tests available)
I have done 15 days of Doxy but since stopping about a week ago headache and muscle pain have reoccurred frequently. Chest pain is on week 12 (normal heart–echocardiogram).
I have never had such bad timing–resigned from my first teaching job out of college for medical reasons to move closer to home.
I am thinking about seeing an infectious disease specialist.
Words of advice, this disease is not something to be shy about. I was living alone for the first time and learned that you are your only advocate… push push push the doctors for answers until you are satisfied and feeling better. do what you need to do, without your health and support, you dont have much!
Good luck all my fellow RMSF patients and don’t give up….
Glad to hear I am not the only one suffering after treatment has stopped.
All very interesting.I came upon this site when looking for any info on latent effects from RMSF.I had this disease 14 years ago,and still vividly recall it as one of the worst experiences in my life,OMG the HEADACHE,than k goodness for percocet.I had the flu like symptoms,fever,body aches and a rash on my arms and legs….but the headache was by far the worst.After over a week of that,and a trip to my doctor that diagnosed a virus,my family made me go to the ER.For that I am very grateful,since untreated it could have been fatal. The doctor did his assessment and exam,he immediatlely ask if I had found any ticks on me recently and well,yes as a matter of fact I did about a week earlier.He new right away what it was and started a course of doxycycline and the pain meds.I was also dehydrated by then with a very high heart rate,I promised to drink and call him at home each day with a report on my heart rate in order to keep from being admitted to the hospital. I did recover in about another week or so,with no long term effects that I know of.It has been 14 years and with that has come the usual and typical changes that come with aging and heredity and wear and tear on the body and mind. So why did I start looking for info ,right?? Well,I am a nurse and a doctor that I worked with ,mentioned one time that this patient we had ,had Parkinson’s Disease and the man had once had RMSF,this doctor believed that it was caused by the tick fever.Just makes me wonder as the years go by…the nuerological deterioration of Parkinson’s is not something to look forward to!!! Anyone with any real facts about the long term effects of RMSF[if there are any] let me know.
This is in response to post #72 sent by Kari. Kari, i was dx’ed with rmsp i believe a couple of weeks after initial symptoms of sore muscles mainly, changing to sore joints. I have just finished 10 days of doxycycline and still have pain in my joints, particularly at night. It feels as if my arms want to fall asleep and then they ache and feel so heavy. my knees also bother me. i haven’t noticed improvement since i began treatment and have also wondered when I’ll feel better. My MD said in two or thee weeks I should be over the joint pain and that it should be slowly receding. It isn’t. Please keep me informed about your progress. I never had the high fever or headaches, just muscle aches that got progressivley worse.
I have researched a lot and discovered that co-infections of Lyme, babeiosis, barteonella, erichelosis etc. can often go along with RMSF. The vectors can be ticks, lice. mites or fleas. I did handle a tick that CAME OFF MY DAUGHTER. If you have an open cut the bacteria can be passed that way. I did not have a rash that was on the extremities but later was on my chest and was very dark and spotty., but several months after the confirmed blood test.
If you need more info go to lyme disease web sites. Find a local support group.
(ilads.org , lymenet.com, Lyme disease foundation, and CLDA (Calif. Lyme Disease Association) READ ALL RELATED LITERATURE-
There are treatment guidelines that should be followed. You need a Lyme Literate MD, not one that adheres to the short term treatment philosophy. RMSF has to be treated by law, not like the CDC guidelines for Lyme, which are flimsey.
GO TO pathmicro.med.sc.edu and search Rickettsia- There are different kinds of RMSF organisms and present differently.
Go to a good Dr. get tested by Igenex Labs for specific infections-leave nothing out. You can get treated with Doxy and still be ill if there is something else going on or you may need to double up on meds.
I am not a Dr. am not prescribing, just providing more ways to get info so you can advocate for yourself.
I don’t remember how I found this site or how to post to all-hope it goes to all here. I like the suggestion of Susan too-Pray, Worship, Trust, have Faith you will get better..
Above all, pray, Alice
I was diagnosed in July 2009 and was put on doxy for a total of 17 days. I never had the classic symptoms of rash, fever, etc. I had lymph nodes or neck muscle aches and severe leg pains and weakness. The leg pains have improved but are still an issue and I’m still weak 2 months later. I was very active before and now I can’t do much due to fatigue and muscle pain. I have 2 small children and a pregnant wife and feel like I am neglecting them due to being constantly weak and irritable. Taking probiotics, vitamins c,d,multi,calcium & gluc. chondr. Doctors say this will eventually go away “it takes longer in some people than others” which I am not so sure about after reading all these long term effects all of you still have. What can be done to get over this? Good luck to all…I will be praying for you.
I was diagnosed with rmsf over a year ago. At this point in my life i feel like I will never be the same again. I still have severe joint and muscle pain in my arms, hands, knees and jaw, as well as fatigue and memory loss. The long term effects of this disease are almost a mystery except for what I read on blogs and forums like this one. I am desperate for answers. If anyone knows a good website or book about this disease please let me know!!!
These posts were helpful, but where do I find the answers to the ?’s asked by those who posted?
I too have a positive RMSF blood test 2 months before I was treated. I have seen first hand the long term effects of neurological Lyme in my family member and it is not good. Does RMSF have the same long term effects? Is the bacteria as evasive to meds as Lyme ? Does it go dormant then re appear again, like Lyme? I need to know what to expect and how aggressive I need to be treated.
I do know that Dr’s have to immediately treat RMSF or they can be in serious trouble since there have been deaths from RMSF!
My symptoms were very few, and I believe I had poison ivy at the same time, so had methylpredlosone (steroid) and z-pack. I do know that those treated with steroids who have Lyme do not respond as well when put on antiobiotics after being on iv steroids, but do not know if this is true for RMSF. Does anyone know?
Also, has anyone been totally cured by doxy or by homeopathic medicines?
Appreciate any help that is given.
Has anyone that has tested positive for RMSF ever tested negative after treatment? My medical doctor said it will always test positive once you have had it. Is this true?
I was diagnosed with RMSF in June 09, my blood test results showed that it was chronic and that I may have had it for several years. I believe this to be true as I had all the same problems as everyone else for many years, including optic neuritis which may be caused by RMSF.
I am unable to take doxycycline, so I made an appointment with a homeopathic/md doctor. After being treated homeopathically, I had my blood test done again in Aug 09. Although I still show positive for RMSF all blood work that was out of range is now normal, all symptoms are gone and I feel better than I have in several years. (I had eye pain for 7 years from the optic neuritis, that is now gone too).
I am also from Missouri, there is a doctor in Springfield who specializes in tick borne illnesses and he has a very informative website; Check out the following websites for info on RMSF
http://www.drcharlescrist.com and homeopathyyes.com
For the past 3 yrs. Ive been battling several problems I’ve had a rash that comes and goes on my wrist , stiff aching feet , muscle spasms and pain I’ve developed IBS and Eosinphillic Esaphagitis Ive seen a gastro Dr. and several medical Drs. Ive seen an ENT trying to find out what’s going on with me for three years now .Finally my ENT thought I might have fibromialgia and he sent me to a reumatalogist who tested me for RMSF and I tested pos. I am 40yrs. old but I feel 95 .Thank God UNC specialty DR.Chaudrey tested me for RMSF or it may have killed me.
My daughter had RMSF in April 2009 and has had to be treated twice with medication since being released from the hospital.The Dr. at ER thought she had a kidney infection because that was what the lab test showed.But because of all the reasons we ended up in the ER he sent her to a larger city by ambulance 90 miles away.(Seizures, confusion,angry outbursts as if she had a split personality,short term memorie loss,sever headache, neck pain, body aches, and dizzyness.)She didn’t get a rash but about 2 weeks after her hospital stay she began to get blisters on her finger tips(looked like she touched a hot plate and burned herself) and her feet started peeling.She has had alot of difficulties after she was treated.She was ill during the last month of school her Jr.year. She spent alot of her summer trying to recover and enjoy her last summer of high school all she could.She is a senior in high school and has attended school 2 days and is completely worn out. She has began having her horrible headaches again and confusion when talking.She seems to have some angry spells and just wants to lay down right where she is because her head hurts so bad.If I accidentally touch her feet while she is in the recliner or bed she just about jumps out of place.She said they feel like pins are in them. Then I have to squezze and rub her feet to get rid of the tinggling.She put her feet in a friends pool and they swelled up. She has been getting sore spots on the corners of her mouth that crack open when she talks.When she gets sick with anything it is two to three times worse now and she gets car sick again.(something she gained after getting RMSF)Her body gets really hot but her temp doesn’t pass 98.She spent her first weekend of school at home mostly in bed. She is a cheerleader and I am wondering how she will make it this year.She is sad because it is her Sr. year and after 2 days of school she is exhausted. I am afraid it will lead to depression next.For all of you families having to deal with this awful illness that seems to never go away I pray for you and especially the person going through it.
I wanted to give praises for my 12yo DD that was finally treated for her RMSF positive tests. We believe she got it from a dog bite, and we live in MO also. She has been doing such much better. YEAH! So, as she does get some back pain, she can cool it down, and be fine. She hasn’t had a limp or any major pain since she finished the Doxycycline.
She has gone through so much testing that has been neg. We should get the back MRI results tomorrow. The PT is going well.
And, she is doing sooooo much better right now. NO neuro symptoms most of this time either. She thought she would be sore after the last PT, but not so either.
So, to say the least, either the strep stuff just worked itself out, or the RMSF was the problem, and now it is cured. I know it is said that some symptoms can hang around up to 2 yrs after treatment, but she is just doing so well and I am just so happy.
I am probably more happy we won’t need the drs anymore than anything else. I know she is happy about it. And, it is sooo nice to see her doing bike races, kids’ games, going in the car with us without worrying about pain, playing outside, etc.
From what I have read here, this may not be something that ever REALLY goes away, or she can have other “unrelated” issues down the road. But, for now, we are very happy that the dr finally humored me and treated her for the RMSF. Kymberli
July 1st 2009 I located and pulled a tick. July 20th woke up with what i thought were 25 misquito bites on my left leg. July 21st…i noticed the what i thouht were misquito bites now have puss on them. July 22nd was at work and i began getting dizzy, cold chills, tried to vomit. i called dispatch (i’m a police officer) and i couldn’t figure out how to operate my phone. i began panicing thinking i was having a stroke. eventually i got through to dispatch and was releaved to go home. i went home with a fever…got some sleep and woke up felling better. the bites were larger and more of them with more puss. i went to doctor and was diagnosed with RMSF…not believing what he thought i went to two different doctors and they all looked at the rash and immediately diagnosed me with RMSF. i have now been on Doxycicline for 5 days and feel like crap…loss of words when talking, eyes hurt, head and neck hurt, stomach cramps, severe leg cramps and the list goes on…my question is will i be hospitalized or just finish the doxycycline and i’m all better?
I was diagnosed 3 years ago with RMSF. I was extremely sick and treated three separate times with antibiotics. I also got shingles the third week into the infection. I have since had to quit my job as a RN that I had for 26 years, plus becoming so arthritic I have had to have extensive therapy. I continue to have repeated bouts of extreme fatigue, stiff and swollen joints and flu like symptoms. I have also had to have a wheelchair to be mobile in my home. I have had many tests since the initial tick infection and I have become convinced that my immune system was severely compromised from this disease. This tick infection has practically ruined my life; I can do little of what I did before I was infected. Three of us neighbor women were bitten and infected. One recovered well, two of us did not. I have become terrified of ticks around the country side of Missouri where I live. Please take the prevention seriously. I was bitten on the bum, neighbor women on back of knee and abdomen. Tiny ticks hidden in unlikely places, even with tick spray and long jeans. The Doctors tell me 6 hours is all it takes to be infected once tick is implanted.
Wow. I found this site after being preliminarily diagnosed (blood work still pending) with RMSF. Luckily, my story isn’t nearly as severe as most on this site as I recieved treatment almost immediately after the symptoms began to occur. I’ve been on Doxy for a week now and the muscle/joint pains have stopped as well as the random fevers.
The rash on my arms is nearly gone, but everything seems to have settled into my feet. For the last week they have been so swollen that I can barely get my shoes on. Much to my dismay (and disgust) all the skin on the soles (and now the tops) of my feets is peeling away in large strips. I experience a burning sensation as if standing on hot coals 24/7. The doctor put me on Gabapentin to try to relieve this. It seems to work a little, but not much. Walking is difficult but getting better.
Being a scout leader I repeatedly tell my scouts to put on bug repellent. If only I had taken my own advise! Ironically I was bitten while at Cub Scout Bear Camp. Ah well, I now have a life lesson to share with my boys.
I certainly hope that all of you (and me) get better. This disease seems to be little known by most doctors. Luckily my general MD is quite good and got me on the Doxy right away. God bless all of you and may He give you strength.
P.S. My blood work should be in tomorrow. Keep you fingers crossed for me!
They put my daughter on the Doxy for 2 weeks, after all this time, and the 2 positive tests 2 mos ago. She was in a really bad flare too. Within a few days, she went from being barely able to walk at all (looked like she would fall down) to being pain free again. During the 2 wks, she had one evening of 4-5 hours of numb legs, and by morning, one was numb, the other hurt, and then it went away. She has been off the meds for several days now. This is the longest she has gone without a flare. Yesterday, she did start up again, but she was fine this AM. Then, her back and legs started hurting again, pretty badly, but wetting her down in cold water, seems to make it all go away. We were in the heat yesterday, and it seems that heat is what makes her flare back up. So, I dont’ know if this is the RMSF, or something else entirely. But, I do feel like she is going to do better and better. I wanted to try and provoke a flare, using the heat, to see if she is better after the meds. So far, so good. She isnt’ too terrible. The dr did order PT, as her thigh muscles are tight. I don’t know if this is from being in pain on and off, or if it the puzzle piece that will eventually diagnose her. Kymberli
My 58-yo husband became severely ill 3 days ago w/ very high temp, chills, nausea, vomiting, and headache. I figured it was the flu. Within 48 hrs of original symptoms, a rash came up on his ankle & shin. I immedicately double-checked the internet to be sure b/c I figured it was from a tick bite…and it was.
As an RN w/ pretty easy contact w/ M.D.’s, I called my physician, told him my husband had RMSF, and he ordered Doxycycline 100 mg twice a day. I gave him a loading dose of 200 mg, then 100 mg about 6 hrs later; now he’s taking it twice a day. He began to feel better after getting 400 mg in his system…altho he’s not well by any means.
I suffer from fibromyalgia & chronic fatigue syndrome. In reading your many posts, lots of what y’all are describing about the long term effects make me think that your severe (esp. untreated or very-late treated) cases have triggered fibromyalgia, chronic fatigue, or both b/c these conditions are triggered by some type of trauma…either physical, emotional, mental, or spiritual.
I would suggest seeing a good rheumatologist who could help you.
I pray all of you get well!!
I contracted RMSP when I was 11 years old (1977). At the time, I was the first diagnosed patient of RMSP in 10 years and used in a study for treatments. I don’t remember much except for the hallucinations, so I can’t help with any of that. What I can help with is what I have deducted as being the long term effects.
Long Term Effects:
Infertility
Short Term Memory
Concentration issues
Speech issues (though not serious)
Muscle and joint fatigue on right side
Intense but infrequent spasms up the side of my head
Good stuff – Mosquitos and ticks do not bite me anymore, they don’t even look at me. I still use protection though.
I’m still as active as I can be but as I get older, I am definitely noticing more joint issues. Who knows – this could be from the RMSF or from normal wear and tear.
Good luck everyone!
Hello,
I am going through RMSF. I remember one night I had to abruptly get up run to the bathrroom I knew something was not right. I had intense diahrea and my palms of my hands and soles of my feet itched profoundly. It all ceased and I went back to bed. Someone told me I must have had allergic reaction. Weeks later I began to feel extremely fatigued and ever so often some joint aches. I thought I was maybe getting a virus because my husband had been battling a cold. One day a came home from work and I collapsed with sudden exhaustion and took a nap. A few days later my left ankle began to swell I thought I had injured it somehow the next night I awoke with not only a severely swollen left ankle but my left wrist was swelling and sore and before I got up my right wrist began to swell and right ankle was becoming tender. I had made a Dr. Appt. the day before to have my foot checked out because I had sprained it as well a few months before that. I informed the doctor of all the symptoms and then I told him I had a tick bite a few weeks before and a cut on my finger. My husband had pulled the tick off the back of my knee. He ran a blood test. The week I was waiting for the test results became an agonizing painful time, my joints hurt so bad and then my muscles began to ache, my skin began to have little red lumps appear underneath and they would then sometimes turn into a bruise. My head ached and felt dizzy. I t was very alarming. I called and asked if he could put me on something in case it was a tick infection so he prescibed Doxcycline. In the midst of a night with unbearable pain I began to think of Jesus and the pain he suffered for me. I began to worship Him in the midst of this painfilled Trial and He touched me. He is as close as our breath. He is an ever present help I experienced HIs help. His peace and relief in the midst of suffering. When all else fails Worship!
Put your trust in Him to Save, Deliver and Heal.
Hi my name is ken iwas born on a homestead in montana i contacted rmsf in1935 i was about i dont remeemender much about being sick i do remember the medison i had to take it looked like oarnge juice probably hAD QUINE IN IT tHERE WAS 16 CACES OF it in yellow stone county i was the only one that survied My heart goes out to you folks getting it now you at least have anti biotic now As for long term afects i have night pain in my legs i dont think i have the endurance and energey i should have i am 77 rears old now keep your hope up dont give up find a doctor that knows this dieease
I pulled a tick from the back of my head July 07. I live in St. Francois, Co.,Mo. It was so hot out, I was at the lake and I got a really bad headache.I took excedrin, and in four hours the headache was back.The next day a friend came by and I was telling her about the tick. Her son had been bit by a tick when he was young and she say’s he still has problems every now in then . He had Lyme disease. She said I better get checked. We got in the water and a wave came and it was as though I was in ice water. I had fever. I got out took some more excedrin and truely thought that I had the flu.By night my body started to ache all over. I had diarrhea,and could’nt hard’ly walk,my back hurt so bad, I was dizzy.No rash! My friend called and pleaded with me to make a doctors appointment. The next morning I made a doctors appointment but they couldn’t see me till 4:00 in the eve. I went and I was having trouble walking. They took temp. it was 104. The doctor looked at me and said he didn’t think it was a tick. My anckles were swollen,It was as though my kidneys were shutting down,I had no control of my bladder.He said to go to the Hospital and check in. When I got there my daughter had to help me in.They started me on iv’s then chest e-rays ,blood tests.When he came in he said he didn’t know what it was, but he was calling in a infection doctor. When he came he didn’t think it was a tick either but he started me on Doxcycline ,and Moriphine for the pain. The pain was so terrible. They released me in 2 days saying that they didn’t think it was tick related. I was home 2 day’s when I broke out with the rash. I called the doctor and he put me back in the hospital and started me back on Doxcycline again. The infection doctor came in and I insisted that they do a culture. I got to go home after 2 more days but still on doxcycline by pill. In a week the results came back as rocky mountain spotted fever. Since then I had trouble climbing stairs, memory loss, ear infections, walking and still have joint pain.
My 12yo DD is still having issues, although it comes and goes. Of what I read, since her pain isn’t there all the time, and she doesn’t really have fatigue (unless she’s been up all night with pain), then maybe this isn’t all RMSF related.
We finally saw the neuro, after the rheumy wrote in his report that I was prompting her(he should have instructed her to tell him when his exam was hurting her, she was grimacing, so I told her she should tell him), and that she was making this all up, or having sympathy pains for her little brother that has been in and out of Children’s. He NEVER said this to me when we were there. Her counselor was going to release her because she is so grounded, until this chronic pain cont. And, we’ve talked about if it is stress before making all these dr trips. I KNOW she isn’t making it up, because I have observed her, and if anyone, it wouldn’t be her to do that. She actually tries to hide it when she starts hurting again.
Neuro said we could go to infectious disease if we really believe it is the RMSF, after he said her tests were normal. He says to keep her on Neurontin for 6 mos, and take her off if she stops having pain by then.
The other avenue we are going to explore is Celiac Disease, which can pop up after bacterial infections. I highly suspect I have it, and the tendancy to get it is inherited. So, perhaps the Strep and RMSF has triggered this, and is causing her symptoms. It would explain why it comes and goes, and all of her other testing being negative.
So, that is our update. I am really saddened by all of your plights, and I hope that you get some answers and reprieve very soon.
Google the marshall protocol and got to there website. Some very good info on the long term affects of lyme, rmsf, and other bacterial diseases. We definitly are not alone on this fight. The marshall protocol is a process that fights the longterm affects with antibiotics and certain drugs which are taken in phases. Very interesting comments in there forums.
oops. cont.—-In Atl. He seemed to be more at a loss than my regular phsycian. When I was first dagnosed I was feeling pretty bad. It seems to come in waves but was always there. When the second round of Doxcycl came around about halfway through I felt incredible. I cant describe it. The Dr. I saw today is telling me to get off the meds and that I was really testing neg this whole time for it. But I have been getting better every round. The lab and my regular Dr. swear up and down I have RMSF. I’m pretty sure I will go with the labs answer tho. I tried to tell the infectious d doc I have been bad off for a while. Im pretty sure the longer it it is in you the tougher it is to get out. What seems to be happening is that phsycians are treating it for one round and letting people go slightly infected only to have it come back up later. I really hope that is the problem Bill. That you still have the bacteria inside you. I know that sounds bad but my life was about to fall apart also up till I started taking Doxcycl. I am at a complete loss at all this. You just cant describe this crap to anyone. I will get the hep c checked just in case. Try to get in there and get tested soon. I know things are tough bro especially having a health issue noone but a few can understand. Its a serious problem that no health officials seem to address or even come close to understanding. I’ll keep you in my prayers man.
i just dont understand this stuff. I got back from the infectious disease Dr. today in A
jb i have been on anxiety meds every since i got it i hope the best for you but the pain in my joints and shoulder comes and goes i have been on many different anti inflammatory and pain meds and you should be checked for also hep c i think that’s where i got mine if so you need to be vaccinated for the other two i do get blood work done for that
no i have not but when i can afford to i will and yes i do believe it will never go away
Bill, have you had blood work to check and see if you were still infected. I promise, this thing can live in you forever if you dont completely wipe it out.
Ive been on doxycycl for 2 months now. They said my platelet count was down to 9. Needs to be below 8 (sound right?). Thing is its been at 9 the last two times ive gotten the blood work back. Dont know if the antibiotics are still working. That being said I do feel alot better. I read where a couple of people were living with the disease and did not know, some for years. Anybody else have the same problem? Its pretty messed up when you wake up one day and your severe arthritis is nearly gone and everything you do is so much easier. And the extreme anxiety I always had was gone. Thats how I felt when the antibiotics really started to work. I can’t make any sense out of this mess. I’m really glad I came across this site. Any feedback with the symptoms especially the anxiety would be appreciated. Hope everyone gets back to feeling normal again!!
I came across this site because I was diagnosed with RMSF and wondering when I will start feeling better.Been on the meds for 3 weeks.. I can relate to Holly and Liz’s story ( same symptoms and forgetting of words)and would love to see if they have since recovered. I noticed their posts were last year. so I am curious.
Dan,
I’m not sure why the dr. took your wife off dox after only 5 days. I know that 5-10 days is the norm to take the med., but with her case being so strong I don’t know why she wasn’t on there for longer. I was taking it for 21 days. I felt worse before I felt better. I wasn’t sure it was working, but after about 10 days I started seeing a difference. I finished my meds today and I go back in 18 days to have my blood work to make sure this awful bacteria is gone. I know you said your wife has seen 10 doctors; have not any of them wanted to put her back on dox? Since she tested pos for RMSF, please ask them to put her back on the dox. It would be terrible if dox was the med she needed and she didn’t get it. It’s horrible to be in pain with this if she doesn’t have to. My prayers are with her. I am in the southeast and the dr said they are seeing more and more cases of RMSF. Have any of your doctors said the same thing? Please keep me updated on the test results.
Ilene says:
I have read thru this forum, and have had 2 tests for RMSF both positive. Had terrible pain & all loss of muscle & took Doxycycline for over 30 days, and Prednisone. Not one of you have mentioned Prednisone & I am still on it. My doctors weren’t satisfied & said I have Polymyalgiareumaticia, that’s after 2 positive tests of RMSF that had to be sent from Ar. to Ca. Help someone. Prednisone mainly makes me pain free 10 mg. for 25 hours only.
Rhonda,
Hang in there, stay positive and fight this thing off. Try and keep active and in motion. I’ve witnessed with my wife that the more relaxed her body is (resting in bed all day) the worse an infection can become (ie night sweats and severe fevers often coming at night while sleeping).
Thanks for asking about my wife and giving an update on your condition – I certainly hope you feel better soon. I can’t believe it has been a month since I posted that information as her condition has not changed. It will almost be 2 months since this all began. she still gets severe fevers 103-104 at night but during the day she is ok (98-101).
The doctor said that it actualy might not be rocky mountain spider fever but they are not ruling it out as her test results change from week to week. Her sed rate fluctuates and the RMSF test comes back right on the nose of positive or negative (I think the antibody is 120 or something). They say possibly TB or a heart condition or possibly her splean. Above all else they have no idea what is wrong with her – which all things considering is crazy. She has been in the hospital 2 times and has seen 10 different doctors.
I will say thay while she was on the dox antibiotic there was no effect after about 9 days and she was told to come off of it but all the sudden a week later her fever was very low and hardly needed tylenol. Now she is just as bad as she was before. I think the antibiotic was doing something but who knows. The doc wanted her on roids but she refused. We are right back to sqaure 1 two months later. I am at my wits end, my wife is in distress. So no good news to report yet.
no my family are not able to help me .I have a wife and two kids Iwas sick again last week went to the doctor he could not tell me why i am in pain but put me on pain pills i cant aford to go to him again Iwill leave it in gods hands now i give up
I thought they say that anyone with the acute illness can have it affect them over the years. But, of what I read, it isn’t suppose to be debilitating. Is there any way that you can get an MRI? See if it is MS or something like that. If it has affected you this much, perhaps there will be some spots or scarring on your brain or spine. Have them do an MRI. Then, if something comes back, you can get an diagnosis, and get disability. Can you live with family until you get more help? Kymberli
I am having more problems with my health than ever I to have 4 am sweats and difficulty in my spelling and thought processes i cough terribly in the morning when i am getting ready for work it feels like the flu i miss a lot of work and i am broke i just don’t have any energy any more the doc cant tell me anything i am about to lose my house because of this mystery i can only hope and pray that things get better i don’t think they will i don’t know where to turn for help my job requires me to work 7 days a week my pain and fatigue will not let me do this i cant get disability because according to there are NO LONG TERM AFECTS FROM THIS TERRABLE CRAP what am i supposed to do now i just don’t know
I would like to know the update on Dan’s wife. I hate that she had to go through so much to find out what illness she had.
I am 35 years old and found out on the 20th that I have RMSF. I own a gym and I have always been active. I’m known for my spunk. Right now, I have very little spunk. I orig. thought I had pulled a muscle because of my shoulder pain. I also was having bad headaches and chalked them up to being on my monthly cycle. When my cycle was over and now my arm was hurting along with my shoulder I knew something was not right. I had pulled a tick off of my neck three weeks earlier and thought that I had lymes ( my daughter had it two years ago). When I found out I had RMSF and started taking the Doxycycline it had been 24 days since the tick bite. I’ve been on Doxycycline for one week now and I don’t feel much releif. I’ve been reading what everyone else has said and I want to bring a new light on things. God is still in control of my life and I believe with all my heart that God is going to heal me. I pray that everyone is healed and feels better soon. Some feel worse than I do and some don’t. I want to feel better now. I wasn’t very educated on RMSF before I was diagnosed and I still don’t have answers to my questions. Maybe we have more power than we think. God says the key is faith.
I am glad I found this sight. I was diagnosed with RMSF three weeks ago after going to the doctor with what I thought was a sinus infection and a reaction to the massive amounts of ibuprofen I was taking for my extreme headache and neck ache. God bless my family doctor who was worried enough to send me directly to the ER. I was doubly blessed that the ER doctor took a look at the rash, asked where it started and how it was progressing and almost immediately knew what it was. Still had massive other test but only to rule out anything else.
Going into my third week and the joint pain is still almost mind numbing at times and night sweats every night. Was trying to find out how long this will be going on. Ready to be over it. All the websites only state how to prevent it not how long it lasts.
The thing that is the kicker, I never knew I was bitten by a tick. The only symptom I did not have is high fever.
I lived in Tennessee at the time that I was diagnosed. I was 10 years old and had just gotten over Hepatitis A of which I had been sick for a month. It started with a horrible headache, then fever, rash, vomiting and stomach upsets. My parents rushed me to the hospital and to tell the truth, they did not know what was wrong with me. They put me in ICU since my fever was a 105 degrees, then a tub of ice to bring the fever down and rubbed me in alcohol. They had told my mother that I had died, but they were able to revive me. I spent a couple of weeks in the hospital before they finally diagnosed me. I can remember have IV’s all over my body. I couldn’t eat because everything made me ill. I was told that most people did not survive back then (I am now 53 years old), but I did survive. Since then, I have been allergic to all sorts of bug bites, wasp stings will kill me, ant bites feel like knives poking in me and now when I get a tick bite, I get a terrible infection, big bulls eye, rash, ect. I am presently taking doxycylinine due to a bad tick bite. The bite itself has a red circle around it and a white center. Sometimes it oozing stuff out of it. Until reading all these comments, I did not realize that you could experience symptoms years after being diagnosed. I have numerous joints pains now, especially in the left knee. I was also told that after getting RMSF that you could not get it anymore. I really thought that this time that I may have Lyme disease. Anyway, if a tick bites me now it is usually brings on some of the RMSF symptoms. Does it ever go away? By what I have just read, it doesn’t appear that way. Right now I feel so tired, it’s like having a horrible flu.
The CDC also told me at this late date I probably would not test positive for RMSF, and I did not although my son did. He is gifted and cannot even read a book at this time. I read a 500 page book in 24 hours after treatment with doxy.
my son was diagnoised 2 years ago with lyme disease w/o any testing. He had the rash, fever, aches, and pain. He was treated with doxy. Since then he has complained with severe joint pain and mental fog. His grades dropped in 12th grade to c’s. This school year he attended the University of Alabama. His symptoms got so much worse second semester he was failing and had to have a handicapped tag just to get to class. He failed all except one class but I can keep insurance on him now. He was finally tested for tick borne diseases by the same doctor and it came back possitive for RMSF.
I also became ill the same summer with similiar symptoms w/o the rash. Doctors thought I had MS. Tests proved them wrong. My muscles in my legs hurt terribly and the mental fog caused forgetfulness and my spelling became horrible. I am a school teacher. I could not think through writing or executing lesson plans. I was sure I was going to have to quit work. I had never related my illness to my sons. One night when I was hurting too badly to sleep I was trying once again to find something on the computer I typed in”diseases that mimic MS” I was shocked when Lyme Disease came up. I went to my newest MD and explained what I had found on line. He agreed to give me Doxy. After two weeks I felt like a different person. No more pain, mental fog, or bowel incontinence. I had my life back except during the last year I had developed psorisas. It turned into a severe case. I enlisted in a study of a new drug for this condition. I was told that RMSF or Lyme could trigger this disease. I began treatment of an unknown drug. Within the first week I developed a symptom found only with the use of Embrel. Now I knew what I was taking for psorisas. Within 6 weeks all my symptoms of RMSF returned. One of side effects of Embrel is worsening of certain infections or diseases. My MD gave me doxy again. I got better but not as well as the first time. I now am spending my effort getting help for my son. I called the CDC and they said there were certainly long term effects of RMSF and referred me to my State Health Department. When I called and told them of my refferal from the CDC there was silence and then a roar of laughter in the background. They could not believe it.
I still have no answers for my son. Doxy did not help him.
Some history:
My wife has had a fever of unknown origin for 1 month now starting on Easter Sunday.
– Sudden onset Easter sunday: vomiting, leg cramps, back pain, severe headache and fever of 103.
– We figured it was the flu
– As the days went on the fevers were getting worse and headaches and neck pains but no more vomiting.
– after the 5th day we went to the doctor in which he gave us an antibiotioc thinking she might have a bacterial infection.
– She started taking it but bothered her stomach made her sick and she stopped takign them.
– She has a fever every day to this point 1.5 weeks later – fever which goes up and down with Tylenol and back up again.
– Fevers hit the 104 mark and we enter the emergency room.
– They think she has meningitis but when they give her Tylenol her fever goes down; she seems fine and they send her on her way thinking she may have a viral infection.
– Finally the doctor tells us to see an infection specialist.
– We tell the 2 week story of fevers, emergency room etc…and he admits her into the hospital for “tests”.
– She takes a ton of tests, cultures, blood, CT scans, etc…all come back negative.
– she is in the hospital under the suspicion of meningitis for 4 days taking nothing but Tylenol and an antibiotic that did not seem to have any effect. Her diagnosis is Fever of unknown origin after ruling out menengitis.
– she is released from the hospital 2 weeks after sudden onset of illness with the thought that she may have a viral infection with no antibiotics given to us with release.
– We think it is a virus running its course so she rests in bed for a whole week taking tylenol and eating healthy with a steady dose of antioxidants. This does nothing. She sees the doctor and he thinks she is getting better.
– During the end of that week (which is 3 weeks later to the day of onset) Saturday night she gets a 106 fever.
– We panic thinking of a severe disease or infection that was not yet found.
– We go back into the hospital open to every test they can give to find this thing.
– She is there for 9 days and has every test under the sun – infectionss/cultures, bone marrow, mri’s, xrays, galium scans etc…..all negative. Although the cultures taken over the course of all the tests were said to come back at a later date as they needed to evolve.
– She is released without a known cause of fever and given an antibiotic.
– Exactly 4 weeks and 3 days later (today) the doctor said that she tested positive for Rocky Mountain Spotted Fever. He was unsure if this was a false positive as the initial test was for a wide range of illnesses/infections. We are waiting for now waiting for more definite results.
– My wife had a 103 fever last night and severe back pain and this thing will not quit.
From what I have read about the Rickettsia rickettsii family of diseases none of them are good and I am afraid my wife now has this illness which makes th emost sense. I will say that we feared the worse as here White blood cell count was severely low and leukemia was thought of. While not exactly the right thing to say – I will take this lesser of 2 evils any day of the week. From what I am hearing of this illness on these posts that this can stay with you for a long time even if treated early and properly which is very scary. My best wishes go out to all of you for a full recovery. I am glad I found this posting.
DD tested pos for RMSF again, but titers are lower. The nurse said they called Children’s and they said they believed they are false pos and there are many around here. We live in Central MO too, so I do wonder. DH said it could be the tourist economy, that an outbreak would be bad news to admit.
I did talk to her about my theory it was from the dog bite, but the bacteria was so small, she didn’t have the actual illness, but is suffering now from it. It is the only thing that makes sense.
She said no need for tx, esp since she was feeling better for so long. Tonight, she had to get pain relief, so I hope it isn’t another flare up. Another false pos? I wouldn’t think so. Kymberli
That is so crazy! My friend’s daughter kept falling down, and they tested her for epilepsy, said she had brain lesions. But, doing a 3 day EEG didn’t find anything, so they said she must be doing it to get attention. What?? How can someone make up brain lesions? Ugh.
I was just diagnosed with two tick-borne ailments after 12 years of looking for what was causing my fatigue, joint pain, etc. I was told I could have MS and they found a lesion in my brain and peripheral nerve damage. I am wondering myself if this could be b/c I went undiagnosed for so long. I got fed-up with the doctors b/c they decided if they couldn’t figure out what was wrong with me that I must be making it up, even the doctors who found the damage to my nervous system.
I am so glad that I have found this site. My almost 12yo dd has been having many issues. She seems to be on a better 3 wks now, so that is good. But, during this time of less pain, she has had some “neuro” symptoms that concerns me, especially if they get worse.
We’ve been on this journey for 4 mos now. First off, we are waiting on the recheck of the RMSF that she tested positive for. I didn’t think that could be causing all this, but now I wonder if this is just something that will work its way out, and is related to the RMSF afterall.
Jan 15 09, she kept getting shocked every time she touched something. Then her hip was in such pain she was limping. I take her to the dr the next day, xray is normal, but over the weekend, her whole right side of joints were in terrible pain, some were warm but not red. I am not freaking in front of her, but was afraid of JRA. We go to the dr on Mon, and he does a throat culture which is pos for strep. I was actually SOOOO relieved. So, with ABx in hand, I am watching for my other 6 children to get it, which they never do. Not only that, but she really didn’t have symptoms for it, strange, but not impossible. Her illness 5 wks before was viral, since everyone got it. In 3 days, she is good as new, in 6 days, she hurts worse than before. Dr tells me in the hosp while I was in with our baby that her titers were really high, so it may take a while.
So, they do the culture again. Pos again. So, a stronger ABx. No relief. She limps for 5 weeks, but I found out that reactive arthritis can last up to 6 mos or 12 mos depending on source. At 6 wks, the dr refers us to the rheumy as he said it could be reactive or turning JRA. Her pain comes and goes in intensity, but she only had 9 full days pain free out of 90. She was so severe before the rheumy it was terrible. By the time we get to that appt, she is pretty ok. So, he says to come back in a flare and that JRA is constant pain, doesn’t come and go. We go back in a flare, and he said there was no evidence of arthritis, all labs normal and xrays too. He refers us to pain dr for “neuro pain”. I am not happy about that.
Next day, I ask the dr if she could get Lyme from the dog bite in Aug that the GP never put her on ABx for. He said no, but they would test for all tick borne illnesses JIC. He also did back xrays, since I wondered about that. Her spine is the worst, but the rheumy never checks it. So, I assume without a call, all was normal. The dr also made a referral to a neuro, because I think the pain dr is a waste.
The last 3 wks, her pain is better, although still there many days, but during this time, she has fallen for no reason, leg went numb twice for 30 and 70 min for no reason, really dizzy two nights in row, and so bad one morning that she couldn’t get off of chair until noon. Vit B12 in these energy drinks seemed to put a stop to her constant terrible pain with limping during the last flare. Nurse says to wait until neuro to do bloodwork for that.
Imagine my surprise when I call them to tell them about this chin rash she has had twice now, that they wanted to recheck her bloodwork from the Lyme draw. The rash looks like RMSF, but just a small patch on her chin, so that doesn’t make sense, unless she DID get RMSF from the dog bite, which is on her right cheek. Now, I know this is suppose to be impossible, but how could she have a pos for RMSF and never have a bad illness? The flus she has had was when the other kids have. They all had flu 3 weeks after the bite though, could have been coincidence. I had specifically asked the doc if she could get Lyme or RMSF from a dog bite. He laughed and said she couldn’t have RM for that long (4+ mos) without severe issues, and we wouldn’t be talking about it at that time. So, I never researched it, but Lyme fit so well for her.
First I thought she either had reactive or JRA, then I have wondered about a very young onset of MS, but the rash. So, now she is pos for RMSF, and the rash is on her face. I prev wondered about lupus, but again, the rash is not on her nose, and no evidence of true arthritis.
It would be good to know if this is all just residual effects of RMSF, and we can move on with life. I had been holding onto hope that this was all going to go away. But, if reactive can lead to JRA, perhaps Lyme and RMSF can to. I don’t know. Or, you just live feeling old from this young? I sure pray not. Her AMs are worse.
She has also had “panic attacks” of heart racing, even though she wasn’t anxious. She had a seizure after a blood draw, which they said was a vasal vagal reaction, but she was ok with it and other ones after. She tremors from extreme pain or nervousness on occasions where she hasn’t been other times in same situation. Warm baths help most of the time. She has problems swallowing pills, headaches before, gagging for no reason, tendon pain, her spine and legs are the worst.
We also live in central MO, Lafayette County. Her last tick bite was 4 yrs ago and at 2yo. And, rheumy ruled out fibro. She has sleep disturbances, sleep walks now, and tired, but not as much as I would call fatigue. How can a child have an illness unnoticed? She hasn’t had any additional illnesses than the others, and actually has had less. Thank you.
Maybe I’m not crazy after all! I can’t begin to explain how excited I am to have found this site!
I was dx with RMSF when I was 13. For the next 10 years I had no immune system. I missed significant amounts of school for things like bronchitis, pneumonia, tonsilitis, mono, even an unidentified bacterial infection!
Then I started having other symptoms including: thyroid (dx as “waxing and waning thyroiditis”), joint pain and muscle spasms or “twitches” that only affected the right side of my body and would come and go, extreme fatigue, muscle aches, weakness, night sweats, light sensitivity, low grade fevers, shortness of breath, canquer (sp?) sores in the mouth, chest pain, jaw pain, general malaise, etc.
I get symptoms in what I call my “clusters”. For the past several years I have experienced these “clusters” or flare ups 2-3 times a year for a period of about 2 weeks.
In 2004 heart symptoms entered my “clusters”. Racing heart rate (resting hr around 90-100bpm), pounding pulse that wakes me up at night, and palpitations. In 2005 I experienced my first brain event. I describe it as a firecracker going off in my head followed by a brief period of vision loss. It was extremely scary, since I was driving at the time. The second brain event occured a short time later. This was actually dx as a TIA. I experienced typical stroke symptoms: babbling speech, paralysis on the right side of my body, etc. Dr.s blamed the brain events on a hole in my heart (PFO). I had a closure device inserted in Aug of 2005 and haven’t experienced any other brain events. What is frustrating for me is that Dr.’s concentrated on the hole only, which was only the vehicle for the clot. What about the 6 months of heart symptoms I had leading up to the TIA?
Today I found out that I am anemic…again. I’ve been fighting this since high school. (I could probably attribute a lot of my “cluster” symptoms to the anemia.) This got me thinking, so I went to MedlinePlus and started researching different types and causes of anemia. I came across “hemolytic anemia” which is when red blood cells are destroyed before their typical lifespan is over. One of the possible causes of this type of anemia is tick-bourne infection. Also, heart arythmia’s are a symptom of this type of anemia (I am actually wearing a portable heart event recording device as I type this to record my arrythmias). Hmmmmm. So once again I questioned long term effects of RMSF and googled it. And voila, I found this site!
Here is my main question: Is it possible that RMSF can trigger its own auto-immune disease??
I was bitten by a deer tick on march 6th 2009 in Monterrey california. My husband pulled it out with tweezers and I started to feel sick a few weeks later with headaches, achy, fever and i got a nosebleed and sore throat. I went to a doc in the box and told them that I had been bitten a few weeks ago that I wanted a blood test to rule out lyme’s. They took blood and sent me home. I kept feeling the same symptoms on and off and a week later stayed home sick from work b/c I could not get out of bed same symptoms only much worse and just couldn’t get up.I had a small rash on my thigh that appeared that day. Doc in the box called that day and said I was positive for RMSF and they called me in a prescription for doxycycl 100mg 2x a day for 21 days. I started feeling like I could get out of bed again a few days later. I still have a hard time getting out of bed,achy and need a nap around 2 oclock everyday but am working so that is impossible. I get really sick when I take the meds on empty stomach and really sensitive to light. I am finished with the meds on tuesday and have an appt with specialist on thursday to get a blood test and see if I am over it. Scared but hopeful.
After reading the posts I am thinking i am lucky i did not get as sick as some. I think i may have causght it early but it was in my system for a month before was on meds.
I grew up out in the country, out in the wood, around tics all my life. Its been 14 years since my tick bite. I remember picking the tic off the top of my head in Alabama. Went out of town on a job in Virginia. About 7 days after the tic bite, I felt like I had come down with a terrible “flu” and went back to my room. Was intensely ill and laid in the bed with symptoms for 3 days. First symptoms, lymph node behind both ears were swollen and tender, terrible headache, fever, horrendous diarrhea and vomiting. Went to a doctor in a box thinking maybe I had paint poisoning since that’s what I do for a living. No such luck. Doctor in a box sent me home with a flu diagnosis. Next day felt worse. Went to emergency room. They said I was dehydrated, gave me IV fluids and they sent me home and said if I wasn’t better in a few days to come back. Luckily I had a room mate who to 1 look at me the next day, went a bought a thermometer, my fever was 104.5, and he rushed me back to the same emergency room. There I got a spinal tap, VERY unpleasant. Found nothing. Was admitted to hospital, a barrage of tests were preformed, too many to remember. I don’t know how many days I was in the hospital, in and out of conscience. The doctor on call came in with a nun and a nurse and asked me if I had “Final Plans” in place and could they contact my wife who was back in Alabama. They told my wife that I was receiving “Last Rights” and that they did not know what was wrong with me. I had symptoms for chemical epoxy poisoning. Finally a different doctor came and asked me if they had missed anything like a bug bite. And then that’s when I remembered the tic bite. That’s when the doctor found a slight rash on the tops of my feet. They biopsied one of the splotches, and start me on doxicillin, and suspected that I might have RMSF. A few days later I was feeling better, but I was very weak, they released me and told me not to drive home to Alabama because I was still very sick. Finally got myself home to Alabama and was totally incapacitated for over 2 months. I was finally released to go back to work. Since then I have had continuous joint pain, that moves around from joint to joint like a pin ball, I have headaches, breathing problems, weight gain from the years of Prednisone steroids. It still effects my ability to work with the breathing problems and constant pain, my gut is always out of whack. Also it had effected my speech and writing abilities from time to time, such as I will be thinking of 1 thing and write another. I also am more irritable, and I have Hep C that I might have contracted along with the tic bite. I was very active and now I am lethargic, wanting to sleep all the time. I feel like my symptoms are going to make me unable to work and I am not sure where to turn. My doctor often looks dumbfounded when I present my symptoms. He does not connect my current symptoms to RMSF. Any suggestions out there? In the last year, I have been to the emergency room 1 time and countless other trip to the doctor who says it could be bronchitis, asthma, or whooping cough, he just doesn’t know. Now I am trying to figure out how I get on disability when my symptoms do make it impossible to work. Some body please help me. Thanks Billy
To Andrea, I hope you check back here. I wasn’t planning to post. Just reading through hoping to find info about long-term effects of RMSF. Sure surprised to read someone else diagnosed w/ brucellosis and then Fibromyalgia. Wow! That’s me! Unfortunately, whatever the exact cause, I’m still waddling around with most of the problems you all are talking about. I’ve taken to explaining to people that I had an undiagnosed, untreated case of RMSF that precipitated the Fibromyalgia. FM is usually considered the after-effect of a “traumatic physical event”. ie., RMSF. I don’t usually bother to mention the brucellosis. Well, if you came here looking for what I was looking for I might as well share my current symptoms. Age 41. Got sick ~ age 23 working in rural Italy and New England woods. No rash. Felt like the worst flu ever. Then got worse. Confined to bed for 2 years. Felt like I was dying. I swear I could hear my cells screaming. Had wheelchair. Graduated to cane. Still rather housebound. On Disability for FM. Not inclined to drama. Look tired but otherwise if I don’t advocate, people will assume I’m “normal”. My current problems fit the FM type: migrating pains in varying strength. And type. Sometimes dull fluey ache; other times raging burning in my bones. Memory problems. Word recall embarassing. Trouble focusing, reading. eye strain. And then what I call Chronic Fatigue Syndrome (got that dx too): simplest exertion gives shortness of breath, chest pains. Heart strain. Plunge in already low blood pressure. Feels awful. Symptoms vary and come and go. Better in hot months. Can’t take another winter. Must find warm, safe place to live. Waste of life if heat can help…
Well, that’s my 2c. Since there seems to be so little out there about RMSF long-term effects I thought I’d contribute after all. Especially since Andrea #58 sounds so much like me!
Oh, and chronologically, I could have contracted it here in the states but more likely I got spotted fever and brucellosis both when working in rural Italy. I’m talking out in the woods and fields every day. Inw hich case it is called “Mediterranean Spotted Fever”. Amazing how much more respect I get from people when I tell them that instead of Chronic Fatigue Syndrome. If you gotta explain something fast, might as well get the point across. “Respect, please”. Brother. Still lousy. Using polite language.
As for back story for you all: sick at the end of my job abroad with some of the symptoms. never got the rash. a biting fly/bee thingy left a swollen calf which I treated at the time with something a doc there gave me. :-) eegads…extreme fatigue, falling asleep in odd places. Came back to states and dragged through work. one day realized I was climbing up the stairs on hands and knees (empty room, no audience) and decided I should go home. Maybe I was “really” sick. Everyone in the office was getting a stubborn flu. At this point my story reads like classic CFS, the flu that never left. Except it got worse and worse. I covered that bit. Won’t bother listing symptoms you all know about. Got complicated and awful. Skip ahead almost 10? years. I’m at yet another “travel doc” to rule out some exotic illness complicating my recovery from CFS. about this time people start to talk about FM and the terms become almost synonymous. I say FM to refer to pain and CFS to refer to the heart/bp sickies. Mostly, I’d say I have the FM now with only occasional CFS. Anyway, travel doc #3 is great and tries all sorts of new things including the rickettsia panel. He says no such thing as a false-positive when it comes to Spotted Fever. You either have it or had it if you show titers. did the doxywhatever treatments you all have done. Did it again for kicks. didn’t feel better at any point. But glad to be taking care of business. Now years after dx and treatment still sick with what I’ve been calling Fibromyalgia. Travel doc says little info on long-term effects of rickettsial illnesses. Hm. That’s why we’re here in this lovely forum. He encouraged me to pursue FM for cure/improvement.
I just want to be able to support myself. Andrea mentioned Lyrica. Only just got myself off 2years of Cymbalta. Pretty effective for my “FM” pains. Not to mention the blues. Going off it was terrible. I’m still reeling. not accustomed to so much pain all the time.
Sorry, I was concise once upon a time. Hope this is useful to someone.
Good luck to all living the best lives you can.
~Nan
I’m really glad I stumbled upon these posts. I am fortunate, it sounds like, that I found out I have RMSF fairly early. My symptoms pretty much followed along what the CDC has on their web site. The only problem is that they didn’t all happen all at once. I knew I was sick, but thought I had some really bad flu. That was until the rash showed up on my ankles and eventually my entire body, except my head. The rash appeared exactly five days from the fever. It was a weekend and my joints were swollen and my head was aching so bad, it’s hard to explain if you hadn’t experienced it. I went to the emergency room, the urgent care wasn’t open. They tested for Strep and Mono. The doctor was sure I was using a detergent that disagreed with me. After four hours sent me home and told me to keep doing what I was doing, Ibuprofen and allergy medicine. I was talking to a friend on the phone and describing my symptoms when she told me it sounded like someone she knew who had lymes disease. I went on line and did some research. When I saw the rash for RMSF I knew that’s what it was. When I went to see my doctor, the nurse practitioner was the only one available. She immediately asked me, before I said anything, if I had been bitten by an insect. I shared with her that I had been bitten by a tick about a week and half ago. She immediately started my on Doxycycline 100 mg 2x’s daily. Shot me up with steroids and some pain medicine. The swelling subsided, but the headaches and other body aches continued. My husband called her, she had me come in two days later. She called the doctor in, he thought it was viral, took more blood. He gave me more steroids and whatever the other shot was since they seemed to help before. They almost immediately helped. I have felt better these last two days but have not been able to go a full day without pain medicine for my headaches. I must point out that I don’t do pain medicine. I didn’t take any during or after the delivery of two of my children. I very seldom take headache medicine. Today, I thought was going to be good, until about 1:00p.m. and I felt my neck start in and then the headache came. I took a pain pill and slept for about three hours. I have not had an appetite for about two weeks now. I have had nausea with limited vomiting. I have been very careful to take in lots of fluids. Most in the form of diet 7 up or Sprite. I couldn’t keep water or anything else down. I was searching to find an answer for how long will this go on. I had read on one web site that if symptoms don’t go away after 24 – 48 hours of taking the antibiotics then you have probably been missed diagnosed. By the sounds of what I’m hearing here, that just isn’t true! I do believe in the power of our minds and I’m trying to stay positive, but I’m finding people already getting tired of my complaining of headaches and fatigue. I keep being asked ” how long does this go on?” I just say ” I wish I knew!” For the record I do remember having my daughter remove a tick from my back, I can’t remember the date, but I had several bites on my stomach as well. About a week later the symptoms started. I have missed two weeks of work and I am now on Spring Break (I work in the school) so I have a week to hopefully feel better. I also live in Missouri, Barton County. Thanks again, I really do pray things get better.
Hi everyone. I posted a while back (I am the one urging everyone to contact the CDC and ask the hard questions they don’t want to deal with). So, after several months of the symptoms that landed me in the doctor’s office, 3 separate rounds of doxy, and enough blood tests to keep the Mayo Clini open for a year it looks like we are no closer to the truth.
After more blood tests all we discovered was that I was positive for both RMSF AND Brucelossis. The Brucelossis is a completely different beast I don’t really want to get into here. We (hubby and I) sat downand poured through books and websites of stuff to decide what I should be tested for when my symptoms continued. Not that I have a lot of risk factors for brucelossis but my symptoms just fit. And talk about rare – it has all but been irradicated in the US thanks to pasteurization of milk and milk products.
So when they both came back as ‘slightly positive’ the infectious disease doctor decided that both must be false positives. So I was retested. Both just returned indeterminate (slightly positive) findings again. Everyone is scratching their heads. What is this? What could this be? What the reports did say – I love this – I have an unknown bacterium of undetermined signifigance in my blood samples. They only know it is both similiar to Brucelossis AND RMSF. Does it cause my symptoms? We don’t know. Why doesn’t it respond to antibiotic therapy? Well, we don’t know what it is so we can’t say why it won’t go away or why it doesn’t apparently multiply when antibiotic therapy is withdrawn. A conundrum of sorts….a medical marvel is what it is! Ha! OK. So figure it out then is my challenge. Tell me what this is!
So on I go for more consults, more specialists. Now, my lingering effects aren’t nearly so terrible. By January I still had widespread joint pain and nearly daily headaches, and I still had trouble sleeping, night sweats, rashes breaking out at random and feeling just plain worn out. Oh yeah. I almost forgot… I also have a serious memory issue. Can’t remember something one minute to the next. Kind of like ADHD…So anyway on I go to the Rheumatologist because they just can’t quite figure out what this is.
And more blood tests. For just about everything under the sun. And out of all of this the rheumatologist has decided I have fibromyalgia. Well. I hate to admit it but despite the fact I have some medical marvel surging through my veins I also have something else at work. It fits. Yes, I have arthritis from this adventure, and a whole host of other long term effects. But this experience may have actually triggered my latent tendency towards fibromyalgia. And guess what? It ALSO shares the same symptoms as long term RMSF infection. And because the RMSF is so traumatic it is highly likely that it can trigger FM in those with the tendency towards this strange and very debilitating condition. Unfortunately, there aren’t tests to conclusively determine FM. But I can tell you that after starting Lyrica for the FM my joint pain started receeding, my headaches aren’t nearly as frequent or severe, and the severe nerve pain in my hands, arms, back and neck are all but gone.
I urge anyone living with long term widespread joint and body pain to continue to search for your own answers. At the end of this journey I have found one thing. Knowing what it is isn’t as important as knowing how to get rid of the symptoms. Putting letters together or words together for a diagnosis didn’t do me any good. Getting rid of my headaches and body pain did. I have found I don’t care what this is. Now my thoughts are if it apparently doen’t affect longevity does it really matter? What it all boils down to is that all I really care about is that my pain is lessened and I feel like I can live a relatively normal life again. And that is what it is all about folks. I wish you all the greatest blessing of living, and living well as you continue to find your answers.
my mother deid of RMSF. they packed her in ice tubs and almost gave her a frostbite. My mother was not a lucky survivore. I miss her tremendously, before she deid i couldn’t imagine life without her. I had received RMSF to. And to Taylor, i am glead you did not pass. But i can tell you now that you were probably about to.
that is so gross on so many levels!!!!!! take that off!!!!!!
In the summer of 2008 I began having terrible neck pain. My lymph nodes were swollen. I went to the doctor over and over again. I was first told I must have an ear infection and was put on amoxicillin. After that didn’t work I was put on muscle relaxers. I began to have a fever off and on and very naseated with muscle and joint pain.
In November 2008 my fever got very high and my head and neck hurt so bad I couldn’t lift it off the pillow. This lasted for about three days and then I began to have terrible joint pain followed by a rash. Went to the doctor three times that week and felt like I was being ignored. He finally ran the tests for Lyme’s and RMSF. I tested positive for RMSF. THe doctor called me and told me himself and put me on the doxicyline for 7 days.
I still have symptoms. My joints hurt and I have been very dizzy and light-headed and still get the headache. I went back for the titer and the Doctor said my numbers are where they should be after antibiotic treatment. I have been back to him a few times and he just wants to medicate me for the symptoms. I don’t want to be on a lot of different medications! I feel that the doctor is not listening to me when I question him about the link to the RMSF-he is so casual about it. There must be more to the long-term effects than the medical community is aware of. I am so glad I found others that can relate to my symptoms and frustrations. Please keep providing information if you have any.
ITS FAIRLY RARE. BUT NORTH DAKOTA HAS HAD REPORTS OF RMSF. BUT THE CHANCES OF GETTING IT, IS PRETTY SLIM
omg that is scary can i get it i live in north dakota
I HAD RMSF WHEN I WAS 4. I EXPERIENCE TERRIBLE HEADACHES AND HAVE ALOT OF PROBLEMS WITH MY KIDNEYS. I HAVE HAD IN THE PAST KIDNEY STONES. BUT THE DOCTORS HAVE A HARD TIME FINDING THEM. I HAVE SEVERE KIDNEY PAIN AND DOCTORS HAVE NO ANSWERS. I AM NOW 34. AND HAVE NO IDEA WHAT TO DO. MY UROLOGIST SAID NOTHING WAS WRONG AND I SHOULD FOLLOW UP WITH MY GENERAL PRACTIONER. I HAVE HEARD THAT SO MUCH FOR THE PAST 15 YRS FROM DIFFERENT DOCTORS. ANYBODY OUT THERE HAVE ANYTHING SIMILAR.
I posted awhile ago and jsut came back today to read through some of the new posts. I realized that I have A LOT in common with those who say they have “long term” symptons. (you guys know the symptoms the doctors say supposedly DON’T exist) anyway here’s a list of the ones I feel that have stayed with me.
1. Words! I slur words or they come out with weird inflections. I am a French minor in my undergrad. degree (i took french for years before i contracted RMSF and after) and since i got RMSF in spring 2006 my accent has been totally off! It sounds right to me but all of my teachers and peers mention how its wrong. Rosetta Stone is helping, in a therapy kind of way but I still can’t hear the difference myself.
2. Sickness. I get sick SO much more often and its more intense. This past fall for example i had the flu, a lung infection, bronchitis and temporary asthma (catagorized as wheezing bronchitis) all in a two week period! And it took me about 6 weeks to recover!
3. Blunt force headaches. I’ve had these midly since i’ve been young but they’ve gotton worse after contracting RMSF. It feels like someone is pressing me in the head with a blunt axe. They only lasts for a few seconds (long enough to make me look crazy because i suddenly starting pressing on my head or twitch). No doc has been able to pinpoint why they happen. My closest guess is jaw-tension causing a traveling reaction to my skull plates, but i’m no pre-med major.
4. Scars. This is some of the most embarassing. Even worse then the word slurring at times. When I get out of hot water, like a shower or hot tub I have red splotches all over my legs (where my rash was the worst). I’m only 22 and I’m embarassed to go in a hot tub..its not fun.
Has anyone else experienced permanent scarring? I haven’t seen much information on that…
I have the same blotches, after a shower, or even exercise.
I contracted RMSF last Spring (2008). I thought I had the flu. I ignored it and went on. No rash, just fever, chills and feeling bad. What got me to the doctor was joint pain. Severe joint pain that sometimes was in my hands/wrist and other times in my knee or ankle.
The doctor gave me the antibiotics and they worked. The bacteria are dead. I still have terrible joint pain, though. I have gone as long as a month with no pain but it always seems to come back. I am wondering if it ever goes away permanently. My doctor has few answers and put me on Mobic, an arthritis drug (NSAID). It is in my shoulder right now. Last week, my foot and I had to use a cane to get around. I also had chills and felt generally bad. I’m 37 and otherwise in good health. I have a job that is physically active, so its not easy.
My younger brother was diagnosed with RMSF at the age of 8. He was bitten by a tick on the head. He experienced a severely high fever, and was taken to the hospital by my mother when he experienced a seizure while she was trying to bring his fever down in the bathtub. At the hospital, he was treated for the flu for several days, during which he experienced several more seizures. His headache was severe, causing him to hold his head and scream out in pain. The doctors, after much urging from my father, decided to transport him by helicopter to Cardinal Glennon Childrens Hospital in St. Louis as they did not know what else to do for him. It was here that he was diagnosed with RMSF. He lapsed into a coma for 10 days, at which time they told my parents that they didn’t know if he would recover. He did wake up after those ten days, but his recovery was very slow. He still continued to have seizures, which were treated with Dilantin. Eventually he did outgrow the seizures, but now at the age of 32, he is still experiencing psychological issues…depression, rationality, etc. Has anyone else had any similar experiences? Thanks for reading…
I was diagnosed with RMSF when I was about 8 or 9. I was at summer camp on Long Island and had to go home early because the rash (which actually started on my stomach and moved outward) was so severe, I’d been to the hospital twice and diagnosed with strept throat and a viral infection (which – if you really have RMSF, they should check for strept because it ALWAYS tests false positive), but my fever kept rising despite antibiotics.
I remember intense pain all over my body, but the memories I have are few and far between. I’ve completely lost the memory of at least a whole week of my life. My mother was bathing me in the tub in cool water and my feet turned blue (imagine her shock). She called my pediatrician, who practiced in Manhattan (about 30 minutes away). He told her to go STRAIGHT to the hospital and that she had to go to the local one because she didn’t have time to get me to Manhattan.
I was in the ICU for 5 days (where all I remember is that my doctors were giant bunnies in lab coats). My fever was over 105 when I was admitted. I then was in the children’s ward for 3 days. I do remember most of that, but the pain was so intense I would just pass out sometimes. They took blood 3 times daily and in the children’s ward it was med students doing it. They messed up so often, they had to take blood from my legs (I’m DEATHLY afraid of needles to this day).
After the swelling went down, I had gone from a size 1 shoe to a size 4. None of my clothes fit. I suddenly became a vaguely plump girl when I’d always been scrawny.
I’m 25 now. Between then and now I went from having no allergies to being allergic to:
shellfish, an unknown airborne substance, oranges, pineapple, most shampoos, most perfumes, an entire class of migraine medications, iodine, and one other thing I can’t remember.
I developed asthma. After being treated for smoke inhalation following Sept 11, 2001, I’ve had several cases of bronchitis, bronchiolitis, and pneumonia.
I have IBS, GERD, and had my gallbladder removed after a particularly bad shellfish reaction.
I have incredibly joint pain (which they’re saying is early onset arthritis – at the age of 19), I get muscle spasms, I have incredibly bad TMJ, and the migraines I get are so intense that I was put on an anti-epileptic for 3 years to try to control them (THAT made me have major problems with finding the right word and speaking that I’ve heard described above – though my doctor couldn’t figure out why since I was on such a small dosage).
Based on my experience and the descriptions I’ve seen above, I wonder if some of you are getting false positives on RMSF. From what I understand, you can be missing the rash, or missing the pain, or missing the fever, but probably not more than one of those.
RMSF causes internal bleeding EVERYWHERE in your body, so if you don’t have significant symptoms, I find it unlikely you have it (especially if you’re not feeling better).
Even though I left the hospital after 8 days, I remember a MISERABLE summer and a not-so-nice start to a school year at a new school (I was teased terribly for my bald spot that developed from the medication, which I took for I think 6 months). I remember being in pretty much constant pain for months but it did not compare to those days before and after I blacked out for a week.
This is the first I’ve seen of people talking about having had RMSF. Supposedly there’s fewer than 10 cases a year in the US and it’s amazing to find so many who’ve had it (especially so many so recently!)
WHEN I WAS 5 YEARS OLD I HAD ONE OF THE WORSE CASES OF RMSF I WAS IN THE HOSPITAL FOR ALONG TIME MY FEVER WAS SO HIGH THEY HAD TO PACK ME IN ICE TO COOL MY FEVER I HAD THE RASH AND ALL THE OTHER THINGS.I AM NOE 54 YEARS OLD. I HAVE ACHES AND PAIN THROUGH OUT MY BODY.
I have been trying to find a sight like this for so long! I was diagnosed with RMSF in June of 08 after 3 months of nuerological symptoms. I finally went to the doctor at the end of May after 2 months of thinking I was losing my mind. I have always been solid emotionally, and I was completely blindsided by the confusion and delerium that I felt. I had no physical symptoms at all, no rash, not even a fever that I had any knowledge of. I would just wake up in the morning racked with fear and at 22 years old I would crawl into my parents’ bed and just curl up there and cry. I had no idea what was wrong, and had no clue what to do to feel better. When I finally went to the doctor, they put me on antidepressant and anti-anxiety medication. Believe it or not, the only thing that ever really helped was antihystamine. My doctor suggested it before we found out I had RMSF, but it turns out that it relieves the swelling associated with it and helped me feel better and think a little straighter for short periods of time. But while I was at the doctor, my mother just happened to remember that I had found a tick on my right shoulder blade back in early March. She had removed it and cleaned the bite. It got a little red and fevered the tiniest bit, but I’ve always been sensitive to insect bites so we thought nothing of it at the time. The doctor didn’t think much of it but did test for tick-born illnesses. About a week or so later, after not getting any relief from the medicines they prescribed for me, I recieved a call from a nurse at my doctor’s office saying that the test came back positive for RMSF. I was so relieved to finally put a name with the suffering that I started crying and when my mom and dad found out what it was, they started crying too. We weren’t happy that it was RMSF, just that we finally knew what it was. I was put on doxycycline for 10 days taking 2 a day. I started feeling better soon, but I still had to deal with the memories of where my mind had been the last 2 and a half months or so. I didn’t even know I was capable of going that far down, and I was really struggling to pull myself back up again. It has been an uphill climb, and I’m still struggling with some depression and confusion from it. I was just wondering if anyone else has had an experience with RMSF that affected you predominantly nuerologically? I just want to know that this is going to get better, because sometimes it just feels like I’m never going to get back to my “old self.”
Thanks. I have already had my forst two competitions and im rocking out on BEAM!
I was diagnosed in June 08 with RMSF. I was 12 days into the sickness with high fevers, aching body and a headache that I never imagined could hurt so badly. Went to family dr first, then next day ended up at urgent care, then next day told my husband to make arrangements I didn’t think I was going to make it and we went to the ER that had a infectios disease unit and they saved me. My blood work came back all out of wack and they ended up doing a spinal tap and thats how they found out I had RMSF. I had two IV’s of Doxycline and stayed on them for 3 months after release from hospital. Now I am starting to get bad headaches and feeling pain in both ears. My speech use to be very clear and fluent english, but I’m now noticing that minut slur and forgetting. I am grateful to find this site to see that other people that have been diagnosed with RMSF are having similiar problems. Even though I was told there were no known after effects of RMSF.
Wow, thats pretty sad. I feel bad for you, but cogratulations on level 6 gymnastics.
You guys are all lucky! I’m only 12 and had been diagnosed with Rocky Mountain spotted Fever when i was 10. when i was little (about 6) i was bit by a tick which resulted badly. I ran a fever of about 110 and couldn’t eat or drink ANYTHING i had canqoure sours in my mouth all over and down my throat. Just to eat i had to wash out my mouth with a thick liquidy goop that had no taste so it actually tasted horrrible. I had a few spots on my hands and feet, but the doctor would pinch them and he wouldn’t know why they didn’t hurt at all. Whenever i tried to walk i would collapse. I tried to pick up a glass but ended up having a wet shirt. After about 2 days of staying at home with my symptoms i had to go to the emergencey room becuase my fever started to spike down to 90 all the way up 115. At one point of my stay at the hospital my nurse doubted that i would make it through my disease. But lucky enough i passed out which suprisingly kept my fever down. During that time i was diagnosed with Rocky Mountain Spotted Fever which could end in fatal results. I was treated but the problem was still not revived. So i was released home, but nobody was allowed in my room except family members. My mom cleaned everything so when i was better i wouldn’t get it again. But the doctor then told her that once you get it once, your body is then immune to it. Which was a relief. I eventually sweated out my fever and the sickness baically just crept away. after a couple days of bed rest i could walk aganin and lift things. But the sickness made exama occur on my right hand , a suvier case of it too. But since then i use medicated cream and it has gotten a whole lot better. Now i am healthy as ever and i am on a Level 6 gymnastics travel team. I will never forget my experience and how difficult it was to get through. Also to Samantha i think that you should get blood tested for RMSF, becuase of how fatal it can become.
singed, a healthy kid (well at least for now.)
Hi
Ive come up with a rash on my chest, and my throat on the left hand side was really sore and it hurt to swallow.
I’m really unsure but i’m wondering whether I have been bitten by a tick.
Should i go to my gp and get tested for it?
Thank you
FYI – I sould have mentioned a couple of things in my post. 1st the CDC was never notified. 2nd Don’t ever assume the doctors in your family medical practice speak to one another. I saw all 3 doctors in the practice and I later verified the other 2 had no idea I ever had RMSF or was hospitalized. I realized this when I saw Doctor #2 at a little league football game and he asked me how I was doing. I went on to say the hospital stay and my treatment by the other “Doctor” was horrible and gave kudos to John Hopkins for saving my life. He was dismayed when I gave him this response to his question b/c he never knew I went through all of that. He thought the Bactrim he had prescribed solved my problem and did not know I suffered through all of this with the other doctor. Unbelieveable! I also felt the doctor who treated me and admitted me was knowledgeable b/c he was older (early 50’s) later to find out he was a career switcher and had only been practicing for a little over a year.
I am so glad I found this site. I thought I was going insane. I have had 3 lyme tests. Each one has come back indeterminate. Last week I saw an infectious disease dr. who said, ‘it looks like you had RMSF at one time’. Two yrs. ago I was in TN and came down sick twice in a 4 month span–once with unexplained rash and once with a double bullseye–both times I had severe headaches, fever, flu like symptoms without the congestion, fatigue. I am progressively getting worse as I have joint pain all the time, especially in my spine and legs. A month ago my left arm and half of the palm of my hand had lost some sensation in them. Last August I was so ill I had lost 15 lbs. in 1 wks time, my BP went crazy, but, the dr. said I was ‘ok’ I just had a touch of the flu–without the congestion. (I also have emphysema, when I get sick with a cold I end up with pneumonia.) Anyone else have problems with an enlarged liver? HA–my dr. says this is ‘ok’ too….. I think that is the only two words in her dictionary.
After my 2nd test was done, the CDC actually CALLED my home and asked ‘how I was feeling’?? Has anyone else experienced this?
I went to the dr. during one bad episode and was told that ‘I had a bad cold and was on a diet…’ I walked out. Two days later she called me back saying I had helicobacter pylori and put me massive antibiotics. (She was so proud of herself) Well, the antibiotics have helped my stomache–but it has made the pain/aching in my joints worse.
Thank you for this web site. I don’t feel so alone anymore. And yes I will continue to contact the CDC. If we don’t all band together nothing will get done.
I was diagnosed with RMSF in July 2007. It was the most horrible experience of my life. I am so thankful to be alive. I am not a dramatic person. However, this is a very true and dramatic story. Before I begin I would like to thank everyone who has commented here. I have never seen this before.
Day 1 – I feel horrible. I have a fever, feel sick to my stomach and my neck is a bit stiff with a bubble type sore on it (found out later that the tick who bit me must of also had staph)
Day 2 – Ok I have had it. I need to go the doctor. My fever and the pain in my neck is not tolerable. First Dr. gives me Cephlex, tells me I was bit by something and I had an infection of some sort. Take these and you will feel all better.
Day 3 – I am getting worse and worse. Fever is higher, throwing up non stop, the headache felt like someone was beating me to death and I began having sensativity to light
Day 4 – Back to the Dr. to let them know the meds are not working and I feel worse. Dr. #2 at the family practice says wow this must be staph contracted from the “bite” so he prescribes me batrim and sends me on my way. I begin taking it that day.
By the evening I feel so sick I think I am going to die. I take myself to the emergency room (It is now Friday night at 10 pm) husband is traveling.
ER Visit – the moron doctor figures he will be idiot #3 and gives me a cat scan to rule out can in my lymph nodes since my neck is swollen and now I have a rash (later to find out is b/c of the RMSF) so he tells me to keep taking the bactrim, adds a herpes med (thinking shingles – I don’t have herpes) gives me some vicodin and sends me on my way with a 103 temp.
Saturday – I am pleading to god to please let the suffering stop. I can’t possibly vomit one more time, see one more ray of light, let my head keep pounding or have this rash continue to spread…it is total hell and beyond
Sunday – I reach out to the idiots again and call my family practice. They tell me to go to Urgent Care that the top idiot (Dr.) from the office works there on Sundays and he could see me. Lucky me – sarcastic! The doctor sees me I have 103.5 fever, I am vomiting, I have a rash, headache, joint aches, massive pain everywhere!!! I am begging for someone to please help me. He tells me to stop taking the Bactrim that could be giving me the nausea and rash. He gave me some nausea medicine that barely worked and told me to call the dermotologist in the am and tell them I had a rash and needed to be seen and he then went on to explain that they would say they were booked and then I was to call his office and they would call to get me in. What a jerk…like I am in the condition to this. By now I am wondering if my affairs are in order to care my children and husband when I die. I go home in agony and just cry and cry b/c of the pain.
Monday – I do all of this BS with the determatologist to find they refuse to see me b/c I have been on bactrim and they cannot tell if it is something else or the side effects of the bactrim. My doctor actually asks me, “Do you think you are sick enough you need to go to the hospital?” Ok as*hole we are into day 8 of acute hell what do you think is what I wanted to say but instead I said yes. He asked me to come to his office at 4pm to p/u orders. My husband took me in and he kept me waiting in his office for over an hour while I kept going outside to vomit. He finally got the paperwork done and my husband took me to the hospital. I was very weak. I barely had strength in my legs to walk and was in such pain everywhere. I was dehydrated, in pain, sick, sick, sick and now at 104 temp and he wanted to know if I was sick enough. I should also note that I never did find a tick. So I did not know what “bit me”.
My hopsital stay – (this won’t be so detailed b/c the kids need me) was horrible also. Doctor after doctor. Bit of advice. Be sure whereever you are has an infectious disease doctor and that your doctor is willing to collaborate with other doctors to help get you better. Mine was not. I spent 9 days in the hospital, 17 days into it before my husband finally took me to John Hopkins in MD who within 6 hours started IV Doxycycline and I quickly began feeling alive. Although during my hospital stay I underwent needless blood tests, chest x-rays, MRIs, Cat Scans, Spinal Tap…narcotics out the …. dilatid, morphine, ice baths…endless list of craziness….cancer doctors came to see me, dermatologists did finally come to see me, neurologist who told me I have migraines and prescribed imitrex…what madness. The final straw to my husband getting me the hell out of there was when I told him I could not move my right side. I ripped out my IV’s, went crazy and demanded they call my husband. When he got there he took me straight to John Hopkins. My doctor had been saying he would have me moved when there was a bed…he was a liar I was not on any list there or UVA which he said I was. If I did not make that move, I know I would be dead. I have had long term problems such as fatigue and finding words/speech noticeable to me. It has gotten better as I just made my year anniversary of treatment in August. Thank god for John Hopkins and my local (at least closest to me) Infectious Disease Doctor Henry Rhee from Fairfax Hopsital. His office is in Fair Oaks, VA.
I too had RMSF when I was 10, I’m not 38 and still living with terrible aches and pains. My legs are the worst. I was told I have fibromyalgia. I still think its long term effects, but can’t find anything about that. Also my face hurts most of the time.
Wow, thanks you guys! I’m a seventh grader doing a report on RMSF and this page has helped so much! Thanks and God Bless!
I AM 48 AND WAS DIAGNOSED WITH RMSF IN 1986. I HAVE HAD MANY MANY PROBLEMS BECAUSE OF THIS. I WAS JUST TOLD THIS PAST JAN.
THAT EVEN THOUGH MY LYME TEST CAME BACK NEG 4 TIMES THAT I HAD ALL THE SYMPTOMS OF LYME AND BEGAN TREATMENT. I WAS GIVEN 3 ANTIBIOTIC TO BE TAKEN TWICE A DAY EACH FOR 6 MONTHS. I ALSO DID AND STILL AM DOING HYBERBARRIC TREATMENTS I AM UP TO 60 HOURS SO FAR. TWO WEEKS INTO TREATMENTS I HAD A HUGE HERX REACTION. IT HAS BEEN ALMOST 6 MONTHS SINCE GETTING OFF MEDS
ALOT OF THINGS GOT BETTER LIKE MY JOINTS EVEN MY BLOOD WORK SHOWS A HUGE IMPROVEMENT BUT THE PAIN ON THE SIDE OF MY FACE
THE SAME SIDE THAT WAS AFFECTED DURING RMSF IS STILL HAVING TROUBLE. SO I WONDER IF I TRUELY HAVE LYME OR IS IT JUST RMSF
CONTINUE. IN THE PAST 21 YEARS I HAVE HAD 6 MISCARRIAGES
A STROKE AND MANY MORE THINGS I WONT TAKE THE TIME TO MENTION.SO IF ANYONE COMES UP WITH ANYTHING JUST LET ME KNOW I STILL HAVE ALOT OF HEALTH PROBLEMS UNANSWERED.
Couldn’t believe I was the only one with long term symptoms! Two years after the initial untreated infection (high fever, excrucitiating headache, anascoria, drooping eyelid, joint pain and rash on soles of my feet), I continued to have recurrent symptoms. Opthomologist couldn’t diagnose the periodic anascoria, the general practioner couldn’t figure out the periodic joint inflamation and hypothyroidism. Since the symptoms would occur separately weeks apart, I thought I was going mad. Finally, a terrific nurse practioner tested me for Lyme disease (negative), and RMSF (positive!) and I received treatment with doxycycline. Within 48 hours my long term exhaustion began to recede, and I have not had another episode of anascoria. My eyelid still droops from time to time, but I can live with it. Why isn’t there any medical documentation about this? Thank God for that CRNP! Thank you so much for this forum.
Monday I was diagnosed with RMSF for the second time in 2 years. Initally it took them 4 months to find it. I had to go to an Infectious Disease Specialist. I also have Diabetes and Lupus. My question is: do you have to be bitten again or is it possible for RMSF to lay dormant and reappear. I never had the rash, but low grade fever (101). I have the body pains and FATIGUE. Any information will be appreciated!
Does it hurt when you get rocky mountain spotted fever ?
@Andrea – Wow very interesting, thank you very much! It ‘s been more than 2 years but I sill have some neurological “leftovers”.
I finally heard back from the CDC. Their comments and response on long term effects of RMSF are below:
“Thank you for your inquiry to CDC-INFO. Please find below information in response to your request on treating chronic effects from Rocky Mountain spotted fever. CDC’s website provides health information for your general knowledge. Concerns about a medical condition should always be addressed to your primary healthcare provider for advice and care appropriate to your specific medical needs. Please contact your healthcare provider with your concerns. He or she can best assist you in determining what treatment, if any, you need at this time. Rocky Mountain spotted fever is usually an acute illness (sudden and not long lasting). However, in rare cases where the illness is severe and the damage to the body is widespread, persons may take a long time to recover or suffer from long-term health effects. These can include: * Neurologic problems (such as hearing loss, loss of bowel or bladder control, or difficulty moving or speaking). * Gangrene (death of body tissue), which may require the removal of fingers, toes, arms, and/or legs; These health problems are most often seen in people recovering from severe, life-threatening illness, often after they have been hospitalized for a long period of time. ”
Everyone: Keep on the CDC for answers and be your own advocate. If you truely believe something isn’t right you need to go with your instincts. Good luck to you all in your pursuit for answers and symptom relief and God Bless!
Ditto here…I also would like more info. on long term effects of RMSF. I was diagnosed 12 years ago, and never feeling 100%. I don’t even want to complain anymore in fear that people may think I’m a hypochondriac. (spelling?) I’m so sick and tired of being sick and tired (if you know what I mean). I’m 35 yrs-old, but feel much older; and I seem to get worse when my body feels stress. Even just a little bit of stress. I have an easy job, but the stress wears me out. Mentally it’s easy, but my body is exhausted at the end of the work day. I also have Bell’s Palsy which was onset by RMSF. I get symptoms about every 3 weeks, and it’s painful. I have such a hard time at work. If I could work part-time or not at all I would love it! I feel like this is a handicap because it does effect my daily life and at times, I feel disabled. Does anyone else feel this way? If I could just get rid of the headaches, I’d have good day…
wow ! Andera thanks for the help! I just called there 800 # and they told me they have no record of steriods altering the blood test for rmsf.
andrea-
thanks for the information …we are from franklin county are family dr. keeps telling us they didnt know what was/is wrong with my husband and that the blood work was all fine then we get the letter in the mail from franklin county health dept. so we called them and they told us that the lab company sent them a copy of the bood work that he has tested possitive for rmsf fchd said the labatories have to summit it to the local health dept. when they are possitive . my husband is going in monday night for a MRI to see if maybe there is something else going on . I will go now to CDC and email them .. thanks again
Idie_
Where in MO are you from (regionally)? This is sounding so familiar. I was told my results were not reported to the state health department because my results were false positive. (I wasn’t taking steroids or any other medication, the doctor just didn’t want to deal with the result). From what I have read online about the test procedure that is unlikely. The issue is highly political in my area. The doctors apparently don’t want news to get out that we have a possible RMSF outbreak in the Bates County area, and possibly in surrounding counties as well. (We are located in west-central MO). News like the recent outbreak in western Illinois hurts tourism at a time when my county can’t afford it. We have several upcoming fall festivals and deer hunting season (bow) opened this week and news of such an outbreak could have an effect on the projected attendence and participation. I believe we are our own best advocates when it comes to our health. If we sense something isn’t right we need to continue to pursue it. Email the CDC with your question about long term effects. I did. I never heard back. I urge anyone reading this who has the same question to email the CDC. If enough people do that maybe they will wake up over there.
HELP! from missouri … In june my husband got real ill vomiting, fever , dry deep cough, hurt all over , headaches , finally after 2 weeks I got him to go to the dr . they started him on doxycycline and a high dose of steriods he took that for a week and still continued to get worse so the put in the hospital and diagnoised him with penumonia and a bad viral infection they did blood work from a-z and said it was fine ..he did get to feeling better but cont. to have leg pains and body hurting so he went back to the dr. and he said it was because he had been on steroids thats why he was still haveing pain so about 2 wks later we get a letter in the mail from our local health department that says they were informed through blood work that he has rmsf we were shocked !so we called the Dr. BUT! then again the DR. said the steriods he was takeing altered the test ??and tells us its not rmsf like the health department said. my husband has always been a verry active man who never complains. ….. so im wondering if anyone has been told that steriods could alter the blood test for rmsf ? and what the long term effect of rmsf is ?
I am so glad to have found these posts. I found a seed tick on my toe around June 1, 2008. About 2 weeks later I started having headaches and a low grade fever and a little upset stomach. My infant son was diagnosed with a viral infection (enterovirus) around the same time that causes similar symptoms so I thought I just had the same thing. He had spots all over his belly. 5 days after his spots appeared, I developed them on my belly,too. But they werenâ??t like the typical RMSF rash. They looked exactly like my sonâ??s enteroviral rash. 3 days later his spots went away and mine went away about 3 days after onset, too. End of story. Then around mid-July I had the worst headache I have ever had in my life. I was vomiting uncontrollably, dizzy, and the pain extended down my spine. I was treated at the hospital for a migraine and sent home. Then about a week later the headaches began coming every day. I wake up with them several times a night, they are constant. My joints started hurting so bad I can hardly get out of bed and I am so exhausted the only thing I can think about is sleeping. But I canâ??t get comfortable to sleep due to the severe pain throughout my body. I also experienced a personality shift. I became aggressive, moody, and anxious. I went to see my OBGYN thinking I was having hormonal issues. He did some blood work and didnâ??t come up with anything. But he referred me to my family physician because of the suspicion I had lyme disease from the tick bite given the unusual compilation of symptoms. So I made an appointment and went. They took blood tests, testing my thyroid, my arthritis factors, and did a tick titerâ?¦ the doctor said he wasnâ??t going to prescribe anything because he didnâ??t think I had lyme or any other tick borne illness because of the delay in symptom outbreak. Well, the tick titer came back positive for RMSF (according to his nurse â??only slightly positiveâ?. From what I have read this is absurd. You either have RMSF or you donâ??t period. Supporting this â??only slightly positiveâ?? result the doctor said he didnâ??t see any reason to prescribe antibiotics and wanted to retest the tick titer again in two weeks. He believes it to be a false positive. I did some checking online and decided that his approach was not appropriate so I called and demanded he prescribe antibiotics citing the CDC website information. So he did but begrudgingly. He acts like this isnâ??t any big dealâ?¦ as if because I survived the acute phase of the illness with only mild symptoms that my increasingly difficult to manage symptoms are no big deal and I should just live with them. Or better yet, that this horrible pain is all in my head and the test was a false positive because I never had the true rash or fever or any expressive symptoms of acute phase of the illness. What I donâ??t get is why they (the medical community) isnâ??t addressing cases like mine, and so many others on here. Those of us that have long-term effects without knowing about the initial acute illness phase and finding the RSMF almost by accident while looking for something else months or years down the road. Topping it all off, like many others on here my doctor is refusing to report the case to the CDC or my state health department. I live in east-central Missouri in Bates County. The other thing that blows my mind is the CDC claim this is a rare illness and that less than 1000 people contract the illness per year in the US. I happen to know of several cases this summer that have occurred in my county alone. I have been amazed by the number of people that say they have also had RMSF or currently have RMSF as I talk to people in my community. I believe this illness is largely under-reported due to a lack of interest by the medical community and the agencies responsible for gathering the information. The only way we as the informed and affected public can ensure others donâ??t go through debilitating illnesses is to demand the agencies responsible for disseminating information and gathering records be held accountable. Through our words we may be able to force them to recognize RMSF for what it can be outside the â??textbookâ?? case and pay as much attention to it as they do other more exotic diseases.
I have been in and out of the doctors office for a few months. My symptoms have gotten worse over the weeks. It started out with being very tired, having joint pains, headaches here and there. Next came muscle aches, more frequent longer headaches, my eyes burned and hurt. Next I began to get fevers that would come and go, along with night sweats. I went to the doctor many times during the last few months and he even did blood work for AIDS! I am in NO risk group for that. Last week my spine (NOT my back but my spine) started to hurt, my headaches are almost staying, I feel nausious all the time, I feel weak, I still have aches throughout my body and I just have this over all feeling of “something is NOT right”. I called my doctors office yesterday and the nurse read my blood work and said I “Have RMSF” and when I told her it’s getting worse… she said she’d give the doc my results and call me by the end of the day. She did but said the doctor wanted me to take DOXYCYCLINE 100MG for two weeks twoa day and to see him in a month for a recheck! I do NOT understand his thinking. I just wonder if I NEED to be seeking another doctor ASAP because I might need IV meds. I’m very worried because I’m supposed to start a new job sometime next week and not sure if I will be able to. I have two new grandchildren and bills! PLEASE anyone with advice feel free to send it. Reading all the comments has me very worried, scared and alarmed. Thank you, Angel
I was diagnosed with rmsf about 10 days after symptoms set in(mid July). I did not have extremely high fevers. I had low grade fever (96) I had all the headaches and memory loss (lack of words) severe muscle aches, and very weak and nausious. My rash never was on my feet or hands but on my ribs)I started taking doxycycoline and took two rounds(20 days). it is now a month and two weeks since treatment. I still have loss of words,headaches,muscle aches, and hot flashes. I went to Wake Forest infectious disease doctor about a month into it. He said rmsf runs its course in 10 to 15 days. I basically went untreated due to time it took them to diagnose me. 1 in 4 die untreated (lucky to be here). I felt as if I was slowly dying. the specialist said it reeked havoc on my system and that it would take a while heel. I still feel something is wrong. I am very physical and sometimes I can barely walk down the stairs without being tired.I am interested in the long term effects. I don’t feel like myself anymore. My prayers are with all rmsf victoms and thier worried families.
WoW was I happy to see this! I had RMSF as a 7 yr old. Recently Reinfected 6/8 By the time I had a rash or I actually had a nasty Bullseye I was very ill. 1 month doxycycline. felt better for a few weeks. Now headaches and muscle pains horrendous.I have trouble thinking,articulating, and muscle cordination really bad. How long does this crap take to get over? When will I feel better? I went to an Artrithis specialist yesterday. She did not know much about RMSF and said she was no Pain management specilist. I feel I need an IV of antibiotics or something. I feel the pain may subside if I am treated better. My left side is the weekest I don’t want Pain medicine I want to feel better. i have NO energy, I am having breathing Problems too Any advise anyone? Any Vitamins or exercise/ I have had massages, Reflexology any ideas I can not stay home I have to work!
Very interesting to read the comments about long-term effects of RMSF. It didn’t really click that I may have contracted RMSF or a realated ricketsiial disease until last week while trying to research why I keep having recurring rashes after I run or otherwise become very hot.
Background: Bitten by a very small tick on my upper calf while in Los Nevados, Venezuela. I had just left Mérida and went to this mountain pueblito via Jeep. While getting ready for bed I notied the tick on my calf and burned it with a match. After reading the CDC website I realize that this is not the way to remove a tick, but I thought it was a good method at the time. Several days later I took a trip down the Orinoco River and was hiking through the jungle. After stopping at a place to cool off, I lifted my pantleg and discovered a spotted rash in the crease behind the knee and the upper calf. I didn’t make the connection to the tick bite. Either that morning or the next day I had a terrible headache and had a mild loose bowel movement once daily the next 2-3 mornings after waking up. The headache didn’t go away either. I also had intestinal pain, including when poking at my intestine around the navel.
I went to the doctor the morning after as I got back to the US, which was 3-4 days after these symptoms started. I took a dose of Levaquin each day for three days, which cured the headache and intestinal discomfort. I forgot to mention the tick bite (!) since I figured it was from the food I was eating during the last part of my trip.
I’m going to have to review my medical records, but sometime around that time I also went back to a doctor complaining of a rash on my back. He diagnosed it as some other problem, saying it followed a characteristic Christmas tree pattern shown in photoes inside the PDR, and gave me topical cortizone as well as hydrocortizone pills and ordered up a syphilis test (NOT). If the record shows that it was before the trip, then it’s definitely not related.
It went away but the rash always comes back after running or heacy exercise. I first noticed this rash a few months after my Venezuela trip, but I did not make the connection to that or the previous mild rash on my back. This one affects me still whenever I run, and creates red raised bumps, generally small in appearance, but look like the photos of RMSF rashes on the internet, including the ones in the original post. I get them under my armpits, check, arms (especially on the softer skin), legs, chest and back, but the arms and underarms show the most. They generally do not itch very much. This itch only started after my trip to Venezuela, and it was strange to me since I had been a competitive runner since high school, running 80-90 mi./week in college with no such problems.
Other issues I have complained about:
– memory problems: I have blamed them on work-related mental fatigue or insufficient sleep;
– speech: I used to be very eloquent and full of big words and have a masters degree that required had no shortage of writing, reading, and speaking about complex subjects. However, these days, I often have difficulty speaking as smoothly as in the past, almost like I am forgetting what’s I had planned to say next. I have to date blamed this on learning several foreign languages but I just cannot seem to speak in English as well as I could in the past.
After a couple weekends spent cruising the internet looking for the long term effects of RMSF, I’ve found nothing!
Blood tests confirmed that I had RMSF on July 25th. I completed 10 days of doxycycline twice a day and went in for another blood test. The results were not good as I still have RMSF and the numbers got worse! Go figure. Now the dr is putting me on amoxycillin 500 mg three times a day. I worry about the effects on my organs having this for a month. My symptoms continue to be similar to the ones everyone has noted, espspecially headache and dizzines and muscle aches.
I went to the doctor in december of 07 when i felt so dizzy that It was hard to stand, They never identified it as rmsf. I also never got a rash. I did have the sever pain in my joints my nees were the worst.And you could not have said it any better about the drunk talking, saying the compleate opposite of what you were thinking but the whole time seeing it in your head. It is now august of 08 and I went back to the doctor for a skin problem that started occering after my visit to the doctor in 07 and much to my horror he says that the blood test they did last year showed the rmsf in my system “THANKS FOR THE CALL DOCK”. They gave me doxycycline two take for three weeks. All along I have had speels where I get very dizzy, and have sever digestive problems.And also I have had skin problems where the skin on my hands and feet split wide open and no matter what I put on them they never seem to get any better. I also get bad infections from the smallest of cuts even if there keep clean and coverd. I don’t no if this is related two rmsf or not and don’t want to scare anyone. I have been two three doctors for my feet and hands and they all say something different. But now that I no that i have rmsf Has anyone else out there had skin issues as well? I was very healthy up intill dec of 07 but now all kinds of little issues and pains are starting to pop up. Does anyone know the long term effects of rmsf.
Have any of you considered seeing an LLMD? (Lyme Literate Medical Doctor)? RMSF is a co-infection of Lyme disease and I’m certian LLMD’s know about it and know how to treat it.
You may also be able to find additional information or support in a Lyme disease forum I found at http://flash.lymenet.org/ubb/ultimatebb.php.
They help you also find a LLMD nearest you and will help you navigate around their site.
My friend was diagnoised with Lyme Disease a month ago and has started treatment. They did not get the typical “butterfly” rash like Lyme (but not all Lyme paitents have this rash) but had what her LLMD said was RMSF rash.
Hope it helps. I’m just surfing doing reasearch for her. I’m actually a West Nile Neuroinvasive disease survivor so I can identify with the scary symptoms and unknowns of these diseases. Any help we all can give each other is usually better than what we get from the medical industry.
I also heard Mayo Clinic was not real good in treating or identfying Lyme or Lyme co-infection diseases. This information came from several Lyme infected people who went to Mao only to be sent away with a diagnosis of “depression”.
Good Luck to all
Ok, I am trying to use my nursing degree to pull some strings and get some more information from the CDC. Please go to their web page and request information! If enough people request help maybe we shall recieve it! I hope all of you heal and can move on with your lives and live normally! I wish you all the best and any information I can dig up I will share here with all of you! I will also try and contact a physician in my area who is known for handling the odd and bizarre types of diseases, germs, bug bites ect. and see if he can give me any more information!
Same story with me. I got sick in January and, although the fever went down eventually, the weakness, aches, photosensitivity, and neurological deficits continued for months. I finally was diagnosed and treated in June – six months later.
It’s almost August now, and I still don’t feel 100%. I still struggle to find the right words sometimes, and I have days where everything still aches. Sometimes my muscles feel like they’re unable to move, no matter what I do.
The doc said that I’d either be better by now or dead, but I still don’t feel like myself. I, too, wonder if anyone knows more about the long-term effects of this bacteria.
I guess my fear is that some permanent damage has been done and I’ll never be myself again. On the bright side, I’m starting to have more good days than bad ones, and things seem to be getting better overall… so maybe I will.
I was diagnosed with rmsf late may of 08 after having symptoms for weeks. I took doxycycline for ten days slowly started getting better, and then three weeks later started having symptoms again. I’ve been treated again . feeling ok, but not convinced it is gone. I wish there was more research out there on the long term side effects of this disease. there seems to be alot of people out there with alot of the same questions and long term problems. I was told to go to a disease control specialist if I continued to have problems after this round of medication. I’m so glad I found this web site. I thought I was the only one with these type of problems. In response to shar I believe people can carry rmsf for long periods with only mild effects because it took them twenty days or so to start treatment and I’m still KICKIN! according to text books I probably shouldn’t be here. what do they know?
I’ve been sick for about a year and repeatedly going to the doctor for tests. Having so many somatic complaints was uncharacteristic for me, and I have always been an active, outdoorsy person. After being tested for all sorts of scary stuff, my most recent diagnosis was menapause. People were not understanding what a struggle it was for me to function. My mother suggested I be tested for tick-related illnesses, and the RMSF was indicated. My family doctor is casual about this and will not give me any phone education or face-to-face consultation, just the medication. The CDC doctor by phone said that I cannot have RMSF because I would be dead by now, as a fort-two-year-old would not be able to handle this disease for long, but the family doctor’s nurse says the test is specific and they have seen similar cases. If they had experience with this, I’m wondering why they did not think of it. I continue to have a mild fever after several days of medication, and the CDC doctor said that if I had RMSF, I would be significantly better in a day. I made an appointment with a specialist. Do you think family doctors lump several tick illness together as RMSF? Can people carry RMSF untreated for long periods with only mild to moderate effects?
I think I dodged a bullet. While visiting in Iowa on July 4th, found a deer tick on me July 8th. I just yanked it off, probably left the head, wish I would have researched removal technique before hand. Began to get flu like symptoms, went to the doctor and said I suspected possible Lyme disease. He took blood for a lyme test, and said it would be a week. In the mean time, he said his other blood tests said I had walking pneumonia and mononucleosis. He gave me a Z-pak of anti-bacterial. Found out July 22nd I had RMSF.
I began taking Doxycycline. I feel a little tired, but have had no other extreme symptoms, no headaches, rash etc. I guess I need to give a new blood test, and see if the initial anti-biotic wiped it out. Hopefully we caught it early enough to wipe it out. I didn’t see any post of someone catching it early, so I thought I would add this one. I will update if things change (good or bad).
My husband was diagnosed with RMSF many years ago. After about a month hospital stay, and a year of IV antibiotics he was cleared from the disease. 20 years later he is still suffering from the high fever he had brought on by the disease. Muscle aches and pains, joint stiffness, short term memory loss and we have been trying for 5 years to have a child with no luck. I am a nurse and none of my books, teachers or google has been able to define the long tern effects of this disease. He says his pains are from “getting old” but as a medical professional I truely believe alot of these symptoms are related to RMSF. High fever can induce sterelity but only known with measles/mumps and also memory and brain function loss. My husband is a successful man and has almost a normally healthy life, other then what I have mentioned. Anyone know where to find this information? Anyone else experiencing this? I apprieciate this web page for it has truely been the most helpful!
I’m currently being treated for RMSF with doxycycline. It’s been 2 weeks and I’m still getting headaches and feeling very tired. It’s like walking through water. I’m also having the same problem with words that Angela described. I can see the thing I want to say but can’t come up with the word.
I didn’t have the rash on my feet or hands it was on my chest. I didn’t have much of a fever either but I did have the joint and muscle pain. I also had what felt like a swollen gland on the right side of my neck.
My doctor diagnosed a sinus infection but because I kept saying I thought I could have Lyme disease she had me tested for Lyme and RMSF. Imagine her surprise when I came back positive for RMSF.
I thought I’d be improving by now. I’m wondering when will I start feeling better?
Last year I was diagnosed with RMSF after being ill for a few weeks. I never had a rash, just severe fevers, aches in all my joints, and dizziness. I was overall feeling like I was dying. It has been a year since I took antibiotics and I became very ill again. My mind cannot seem to come up with words that I need to say (for instance if I am telling a story and need to say the word bridge, I see the picture in my head, but cannot think of the word). I was feeling sik for about 4 weeks with extreme nausea, dizzy spells, exhaustion. I went to the Dr.’s and she diagnosed me with a blood test that I was getting over Mono and my numbers for RMSF were up to a 23, 12 points higher then it was last year. The dr. is acting as though it is no big deal, but I need to find out if this disease is destroying my mind and body. Is RMSF a disease that you never really heal from. Is it in a sleeping state and then will reoccur whenever it feels like it? Does anyone know if there are Doc’s who specialize it it.
I have been trying to find out what the long-term effects of RMSF are for about two years. I contracted RMSF when I was 10 and was the third case reported in Missouri at that time. I will be 30 this fall and I have been having all kinds of problems crop up within the past two years or so. I can relate to the posts which say that they feel different since the infection. I too feel the same way. The time it took to diagnose RMSF, while hospitalized was very long. I can’t remember much of what it was like when I had it, but I do remember the rash, nauseation, and the other symptoms before the hospitalization. I have also had a twitch in my neck since then that sometimes causes me to move my head in a different direction than I am looking. Sometimes I talk as if I were drunk, saying words very distorted than what I normally do. In 2006 I slipped and fell on some ice at work. From the fall I now have Spinal Canal Stenosis, Bone Spurs, Arthritis, and Degenerative Disc Disease. I was wondering if there could be a connection between this and having RMSF so many years ago. In 1999 I had surgery to repair a hernia. I recently returned back to a doctor who said I was having recurrent pain from the surgery. This too makes me think there is some sort of connection between having RMSF and the pain radiating all over my body. Has anyone found anything about the long term effects? I wish that I could find some answers.
to concerned mom my son who is two just got out of the hospital and they started him on treatment for rmsf but there were so many doctors we also saw well the symptoms were developing over time, if you look at lab work low platelets and sodium are red flags also low hemoglobin i hope you get things figured out this is serious they can still do blood work because once youve had this your body develops permanent antibodies to rmsf and reoccurance is not likely tell your doctor you want tested for antibodies and they can send them out cause if you know it may help you with possiblelong term side effects not to scare you but there are a few. hope this helps
I know when I got it in 2001. The doctor had to send a blood sample to the CDC in Atlanta, Ga. to confirm that RMSF is indeed was I had. It took about two weeks to get results back.I don’t know if that helps any. I know if you go untreated it can be really bad.Good luck and God bless.
I cannot believe I found this site — the picture of the peeling skin on your foot after the rash is EXACTLY what the soles of my daughter’s feet and palms of her hands looked like back in Nov. of 2006. She has seen every specialist there is and has never been officially diagnosed with anything! They thought she had scleroderma, myositis and other similar autoimmune diseases, but several blood tests never confirmed any of the suspected diseases. Kristin has Down Syndrome, had gone on a field trip with her group to a Petting Farm to pick pumpkins in the country, so she could very well have received a tick bite. She started with a sore throat (or so we thought because she couldn’t swallow anything.) The first doctor she saw prescribed Amoxycillin and she took that for 8 days (maybe that was a good thing.) Her 2nd doctor (a Rheumatologist) thought she had Steven’s Johnson (severe drug reaction to antibiotics.) Feet & hands are healed (but they think she has Raynaud’s Syndrome because of bluing of hands — also her feet are bluish) and she still has a spots on her legs. Her digestive system is all messed up — she has not eaten solid food since Nov. of 2006 and takes only nutritional liquids; has lost 80+ lbs. She had all types of tests in and out of the hospital (endoscopy, barium swallow, etc.) — I took her to a feeding clinic for therapy all to no avail. Has seen a dermatologist, endochronologist (pls. excuse spelling), ear/nose/throat specialist (forget what you call him), rheumatologist and numerous others. If I look back on her bloodwork, what would signal RMF if anything at all? Anything you can offer would be helpful so that I can go to someone for help. Thank you!
I was rock climbing at an old abandoned coal mine near my college in Alleghany county, MD. I never found the tick, it was a terrible two weeks before I was treated. I have a educational/support site at http://www.freewebs.com/RMSFaware
um . ew did he like burn you ?
Well, since I had Rocky Mountain Spotted Fever, I must have been beaten by a tick, but I don’t remember that. In fact, I don’t think I’ve ever seen one in my life.
Oh man that sucks! Were you beaten by a tick?
I was “finally” diagnosed with having Rocky Mountain Spotted Fever in July of 2009. I say “finally” because I began having symptoms in October 2006.
My entire right leg had a red blotchy rash all up & down it & was swollen. I remember having excruciating headaches, severe diarrhea, stomach pain, all I could do was sleep, I remember not eating because I was so nauseous & my neck feeling extremely stiff, it really hurt to turn my head.
I had a rash that appeared to look like hives on my lower back & buttocks. I had tiny little “pimple looking” blisters on both hands (fingers) that weren’t painful. The palms of my hands & both of my wrists were red. They had small red circular marks under the skin, that didn’t hurt or itch (unless I was hot or sweating), I had the same small red marks on the soles of my feet & on my ankles. I remember my feet also itching when the were hot or sweating, which happened every time I wore socks & shoes.
I’m a chronic migraine patient. With these migraines I also have nausea with them. At the time & for months prior to my first sign, I was seen, every month, by an anesthesiologist. At that time, He had me on pretty strong medication for pain & nausea to treat my migraines. He was also preforming trigger point injections, radiofrequency & bottox in several places in my head & C3-C4.
Everytime I’d go to my family physician, at the time, because of the symptoms I was having, she dismissed my complaints & told me my neck was stiff from the radiofrequency & all the injections, I was nauseated from the migraines & had developed allergies.
I remember feeling & eventually being “brushed off” by my doctor. On the last visit I had with this doctor I remember I had my son with me & I was going over, again, all the above symptoms & telling her, I felt like I was going down hill (health wise), I was scared something serious was wrong with me & that I was going to dye. My son (at the time was 12) told her, My mom’s really sick, her head hurts her so bad, she can’t stay awake & she keeps getting this rash all over her body. She looked at my son & said “your mommy has a problem & it’s called being addicted to prescription pain medication”. I was completely taken back by her saying this to my son. If this was truly her concern I feel she could have told me a long time ago.
I remember her then asking me what medications I was taking. As I was telling her, which were ones SHE prescribed, she became frustrated with me when I told her my anesthesiologist prescribed for pain & nausea. I remember her saying ” the list keeps growing (I named 3 medications)”, she then looked at my son & said “you need to hear what I’m going to tell your mommy”. Then she told me “I think you’re addicted to these drugs & this is what your problem is, I think you are mentally sick & it’s effecting you physically. I remember showing her the actual prescription for pain medication I hadn’t filled (it was from a month prior), her response was, “if you’re not taking the medication, your selling it, I believe this is your actual problem I want to do a drug test on you to see if there’s any other kind of drugs in your system, here’s my referral to a treatment center … So here I am, so sick, literally, I could barely function, pleading for
help from my family doctor, only to have her, yet again brush me off & this time degrade me in front of my son. Before I left her office I gave her a urine sample for her drug test & left. (my 12 yr old son ask me if I sold drugs, when we left the doctors office…wow.) Needless to say, her nurse called me that evening & told me my urine test was “clean” & I was owed an apology by their office. I told her “Of course it is, after the way I was treated I won’t be returning”.
I went another year before a diagnosis was finally made by my new physician. It was unfortunate yet, by the grace of God, my younger cousin tested positive for Lyme, his father positive for RMSF. (they were hunters & hunted on our property).
I immediately called our doctor & had my husband & son tested. They were both positive for RMSF. As I read up on RMSF, I realized I had the EXACT same symptoms for almost 2 yrs. I called the office & told them I wanted tested & at first was denied I needed to be tested. I became insistent & very forcefully until she agreed. My test was “Thank God” positive. I was treated twice with 100mg doxycycline for 2 weeks each time.
Today I’m disabled,
I have several neurological, memory, cognitive, speech, bladder/bowel, vision issues & PTSD. I have to use a cane to walk outside my home, some days a walker or power chair/scooter. I have to some days use a shower chair for showering. My legs feel like rubber bands with weights. The bottom of my feet burn like fire. I’m completely unable to tolerate heat anymore or my symptom are magnified, my vision blurs & or doubles now. I have one or two “good days” with energy & several down days afterward if I don’t pace myself. My left leg is weak, buckles out & I fall a lot now. My “Team” of different specialists are convinced all of my symptoms are a direct result of my having RMSF for so long before it was correctly found, diagnosed & treated. I’m told, all we can do is tackle the flair up/relapses as they occur & manage all the symptoms & side effects. I was placed on prednisone 15day pack the last 2 flair ups I had.
Before RMSF, I was very, very active. I was an undercover police detective, Licensed Real Estate Broker, owned my own Real Estate Company, Rentals. Very active as a mother & wife. I worked out everyday at the gym
I was diagnosed 1 year ago with rocky mountain spotted fever by my local physician. He prescribed 1 montH of doxycycline and the symptoms cleared up a initially however 1 year later my symptoms of brain fog confusion and lack of energy returned. my symptoms closely mimiced depression so I started taking antidepressants. after 2 weeks of no improvements I decided to try antibiotics considering that maybe my rocky mountain spotted fever had resurfaced. after the first day of antibiotics I felt amazing it made me very sad to realize how sick I been. UnfortUnately the good feeling only lasted for 2 days. as of today it is been 2 weeks taking 500 milligram zithromax and I’m still concerned that the disease is affecting my central nervous system. I’m very grateful people shared their experiences of this disease to help others.
I contracted RMSF and Lymes disease two years ago. I know exactly the day and bout a four hour window from when I got this tick bite. When my doctor told me that it couldnt be eityher of these cause they say it takes 36 to 48 hours to contract these disease, which is a crock of bull. Four hours is all mine was attached. I got this on a friday and the next day I had the most terrible head ache I laid in bed all day. I had the fever and monday I couldnt take enough meds to keep the head ache away. Tuesday morning I woke up with the rash all over, like the bottoms of my feet and my palms. I finaly got into my doctor on thursday I couldnt stand the light my eyes hurt and was hard to focus on objects. They took blood and said it would be a weeek or so before you get your results. My doctor automaticly put me on meds for 2 weeks is what they normaly what they do to treat I gues. Well she called me the next day they got it back that fast that I did have both RMSF and lymes disease, and
they were gonna put me on a longer dose of meds. By that weekend I felt a lilttle better and I went to work. At that time i worked as a waitress, and by sunday from working all weekend my feet were so swollen i could hardly walk. I was that way all week and had to call in the next week and about lost my job. I had a head ache for 2 weeks straight. I could hardly do anything without being in so much pain. I didnt think that this could recure like most of these people on this article. I have major joint pain from time to time lasting a week or so. And have these head aches that i have to wear my sunglasses inside cause my head hurts so bad. And I am worried bout the long term effects of having both and what i should do. Because I also have had these panic attacks that mostly come with having this. And also the fatigue and the pain. I never thought this would come back. Doctors dont tell you bout all this when you get it. Well atleast mine didnt. It was like take these meds in you will
be ok. Which now looking back on these last 2 years since contracting this I think I am gonna look into this more and find another doctor. Also does anyone know if it can be passed to a baby during pregnancy. Because I will be starting a family and we are realy worried that I may give this to our baby??? Does anybody know?
have had problems since may 2009 and would like to know if they are related to rmsf. have not found a dr. on the west slope with any knowledge or interest.the v.a. has no knowledge of what to look for but have been helpful.my feelings is that rmsf affects all of the bodys systems but may differ in each person. general fatigue ,weakness in the knees and a runny nose have been with me since 2009. would like to talk to others that have been diagnosed with rmsf if interested.
b.sargent,west colo
William,
I am in the same boat, with recurring/chronic RMSF. Isn’t amazing as to how sick we can be and not fully realize it, seemingly adjusting/lowering our expectations of how our bodies should feel, instead of realizing that we are sick!
My experience with antibiotics was the same: much improved at first, then worse. My doc explains this as a die-off reaction; the pathogens excrete toxins when they die. I’ve just gone through 2-1/2 weeks of feeling even worse than before treatment, and now I’m starting to climb out of that.
Since it’s been almost 2weeks since your post, have you improved since then?
Best, Terry