Rocky Mountain Spotted Fever
Posted by Chemist as Biochemistry on Jun 11, 2007
(24 votes, average: 4.29 out of 5)
Loading ...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:
And here is what my foot looked like a month after all that bleeding under the skin: 
153 Responses
Zulu
June 11th, 2007 at 4:25 pm
1Oh man that sucks! Were you beaten by a tick?
Chemist
June 11th, 2007 at 5:20 pm
2Well, 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.
person
January 23rd, 2008 at 11:47 am
3um . ew did he like burn you ?
Lauren
February 9th, 2008 at 3:08 pm
4I 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 www.freewebs.com/RMSFaware
Very Concerned Mom
April 29th, 2008 at 3:09 pm
5I 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!
merej
May 18th, 2008 at 9:57 pm
6I 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.
trying to help
June 7th, 2008 at 1:44 am
7to 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
Robb
June 25th, 2008 at 5:27 pm
8I 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.
Angela
July 14th, 2008 at 8:32 am
9Last 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.
Liz
July 14th, 2008 at 11:42 am
10I’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?
Holly
July 19th, 2008 at 3:34 pm
11My 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!
Jim
July 24th, 2008 at 11:18 am
12I 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).
Shar
July 30th, 2008 at 9:18 am
13I’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?
michelle casto
July 30th, 2008 at 12:46 pm
14I 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?
corey
July 31st, 2008 at 1:44 pm
15Same 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.
Holly
August 1st, 2008 at 8:45 pm
16Ok, 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!
Jody
August 3rd, 2008 at 3:56 pm
17Have 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
chris
August 12th, 2008 at 9:08 pm
18I 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.
Melissa
August 14th, 2008 at 11:42 pm
19Blood 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.
Smith
August 15th, 2008 at 1:06 pm
20Very 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!
Angel
August 22nd, 2008 at 11:56 am
21WoW 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!
Chris
August 24th, 2008 at 10:06 am
22I 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.
Angel R
August 29th, 2008 at 8:27 am
23I 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
Andrea
September 4th, 2008 at 1:01 pm
24I 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 weren??t like the typical RMSF rash. They looked exactly like my son??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 can??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 didn??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 titer? the doctor said he wasn??t going to prescribe anything because he didn??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 ??only slightly positive?. From what I have read this is absurd. You either have RMSF or you don??t period. Supporting this ??only slightly positive?? result the doctor said he didn??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 isn??t any big deal? 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 don??t get is why they (the medical community) isn??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 don??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 ??textbook?? case and pay as much attention to it as they do other more exotic diseases.
idie
September 12th, 2008 at 10:32 pm
25HELP! 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 ?
Andrea
September 19th, 2008 at 9:01 am
26Idie_
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.
idie
September 19th, 2008 at 7:10 pm
27andrea-
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
September 19th, 2008 at 8:21 pm
28wow ! 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.
Bernadette
September 23rd, 2008 at 11:13 pm
29Ditto 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…
Andrea
October 2nd, 2008 at 11:44 am
30I 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!
sandesh
October 2nd, 2008 at 11:51 am
31@Andrea - Wow very interesting, thank you very much! It ’s been more than 2 years but I sill have some neurological “leftovers”.
Felicia
October 7th, 2008 at 2:44 pm
32Does it hurt when you get rocky mountain spotted fever ?
Kim
October 9th, 2008 at 11:07 am
33Monday 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!
Sharon
October 9th, 2008 at 4:47 pm
34Couldn’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.
BARB
October 9th, 2008 at 8:32 pm
35I 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.
just a sevie
October 20th, 2008 at 11:37 pm
36Wow, thanks you guys! I’m a seventh grader doing a report on RMSF and this page has helped so much! Thanks and God Bless!
Darcy Root
October 23rd, 2008 at 7:26 pm
37I 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.
Angie
November 5th, 2008 at 9:55 pm
38I 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.
NanaC
November 7th, 2008 at 9:01 pm
39I 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.
Angie
November 8th, 2008 at 2:37 pm
40FYI - 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.
Samantha
November 19th, 2008 at 8:37 am
41Hi
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
Taylor
November 26th, 2008 at 12:18 pm
42You 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.)
Kelie
November 26th, 2008 at 5:44 pm
43Wow, thats pretty sad. I feel bad for you, but cogratulations on level 6 gymnastics.
Kathy
December 27th, 2008 at 9:57 pm
44I 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.
Taylor
January 14th, 2009 at 2:24 pm
45Thanks. I have already had my forst two competitions and im rocking out on BEAM!
Paula
January 14th, 2009 at 5:03 pm
46I 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.”
JUDY
January 19th, 2009 at 9:10 pm
47WHEN 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.
Kerry Gibbons
January 21st, 2009 at 2:19 pm
48I 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!)
Rachel
January 22nd, 2009 at 3:44 pm
49My 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…
Joe
January 22nd, 2009 at 6:13 pm
50I 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.
Lauren
January 23rd, 2009 at 2:37 am
51I 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…
CHARLIE
February 13th, 2009 at 12:42 pm
52I 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.
paul
February 16th, 2009 at 12:51 am
53omg that is scary can i get it i live in north dakota
CHARLIE
February 16th, 2009 at 4:28 pm
54ITS FAIRLY RARE. BUT NORTH DAKOTA HAS HAD REPORTS OF RMSF. BUT THE CHANCES OF GETTING IT, IS PRETTY SLIM
Kristina
February 20th, 2009 at 2:33 pm
55In 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.
KASHIE AND JESSIE
March 4th, 2009 at 2:44 pm
56that is so gross on so many levels!!!!!! take that off!!!!!!
Isabella
March 12th, 2009 at 9:06 pm
57my 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.
Andrea
March 13th, 2009 at 3:06 pm
58Hi 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.
Mary
March 16th, 2009 at 12:18 am
59I’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.
Nan
March 16th, 2009 at 7:08 pm
60To 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
bill
April 12th, 2009 at 10:24 am
61I 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
rachel
April 17th, 2009 at 10:12 am
62I 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.
Shannon
April 23rd, 2009 at 1:09 am
63Maybe 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??
Kymberli
May 8th, 2009 at 5:11 pm
64I 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.
Melodie
May 8th, 2009 at 7:30 pm
65I 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.
Kymberli
May 9th, 2009 at 3:46 pm
66That 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.
Kymberli
May 12th, 2009 at 10:39 pm
67DD 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
Dan
May 13th, 2009 at 4:38 pm
68Some 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.
wanda edgil
May 13th, 2009 at 8:50 pm
69my 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.
wanda edgil
May 13th, 2009 at 8:57 pm
70The 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.
Terry Vail
May 16th, 2009 at 11:16 pm
71I 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.
Kari
May 17th, 2009 at 7:37 pm
72I 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.
Rhonda
May 28th, 2009 at 2:58 pm
73I 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.
bill
May 30th, 2009 at 9:40 am
74I 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
Kymberli
May 30th, 2009 at 11:59 am
75I 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
bill
June 3rd, 2009 at 11:14 pm
76no 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
Dan
June 4th, 2009 at 6:18 pm
77Rhonda,
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.
Rhonda
June 11th, 2009 at 1:38 pm
78Dan,
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.
Mara
June 14th, 2009 at 10:11 am
79I 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.
JB
June 14th, 2009 at 4:02 pm
80Ive 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!!
JB
June 14th, 2009 at 4:10 pm
81Bill, 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.
bill
June 17th, 2009 at 1:25 am
82no i have not but when i can afford to i will and yes i do believe it will never go away
bill
June 17th, 2009 at 1:42 am
83jb 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
JB
June 17th, 2009 at 6:28 pm
84i just dont understand this stuff. I got back from the infectious disease Dr. today in A
JB
June 17th, 2009 at 6:50 pm
85oops. 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.
JB
June 17th, 2009 at 9:10 pm
86Google 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.
Kymberli
June 19th, 2009 at 1:30 pm
87My 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.
Ruth
June 28th, 2009 at 12:48 pm
88I 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.
Kenneth
June 29th, 2009 at 11:46 pm
89Hi 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
Susan
July 7th, 2009 at 1:37 am
90Hello,
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.
Annie
July 8th, 2009 at 11:09 am
91I 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!
Kymberli
July 16th, 2009 at 12:51 am
92They 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
Susan
July 22nd, 2009 at 8:34 pm
93I 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.
Jesse
July 25th, 2009 at 9:39 pm
94July 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?
Kymberli
July 26th, 2009 at 4:57 pm
95I 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
michelle
August 26th, 2009 at 9:08 pm
96For 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.
Kathy
August 30th, 2009 at 1:44 am
97I 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
www.drcharlescrist.com and homeopathyyes.com
Kathy
August 30th, 2009 at 4:27 am
98Has 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?
Alice
September 4th, 2009 at 9:41 pm
99These 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.
Allison
September 5th, 2009 at 8:00 pm
100I 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!!!
KENT - ALABAMA
September 9th, 2009 at 3:21 pm
101I 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.
Alice
September 9th, 2009 at 10:55 pm
102I 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
sara curtis
September 13th, 2009 at 11:50 am
103This 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.
Debra
September 13th, 2009 at 9:00 pm
104All 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.
worst thing ever
September 23rd, 2009 at 11:28 pm
105Hello,
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.
Jennifer -Alabama
September 25th, 2009 at 3:48 pm
106I 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.
Taiwo Portage-Indiana
September 25th, 2009 at 5:00 pm
107I 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.
Kathy
September 29th, 2009 at 7:37 pm
108I 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.
Kathy
September 30th, 2009 at 10:26 am
109Another 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.
Tina
October 7th, 2009 at 11:57 am
110Hi 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
Kathy
October 7th, 2009 at 10:59 pm
111Hi 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
Tina
October 8th, 2009 at 8:32 pm
112Hi Kathy,
No I did not receive it.
novakidseatfree@gmail.com
Thanks,
Tina
Kathy
October 25th, 2009 at 12:07 pm
113Blood test results in, all is within normal range. Still feeling great!
Jessica
November 2nd, 2009 at 11:27 am
114I’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!
Jessica
November 2nd, 2009 at 11:28 am
115Oh, coincidentally, I’m also from Missouri, the southeast corner
Kris
December 24th, 2009 at 11:26 am
116I 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
Teresa
January 12th, 2010 at 11:58 am
117I 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!!!
arthritis pain releif
January 13th, 2010 at 2:42 am
118arthritis pain releif…
If you can’t work because of your Arthritis you may be eligible for Disability….
Ray Wohlschlegel
January 17th, 2010 at 11:38 am
119I 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.
Kerry Gibbons
February 1st, 2010 at 11:38 pm
120Nice 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.
Lisa
February 10th, 2010 at 4:02 pm
121My 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.
Debbie
February 16th, 2010 at 10:48 pm
122I 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?
Judi from Arkansas
February 22nd, 2010 at 2:12 am
123My 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.