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04/01/2009 06:10 PM

Help finding a RMSF specialist

d8383
Posts: 1
New Member

Hi everyone!

Glad to have found this website!! I contracted RMSF 22 years ago and my life has NEVER been the same. For 22 years I have seen countless doctors (internal medicine, neurologist, infectious disease, etc.) and I am sick and exhausted..not to mention the financial burden of the scans, CT's, Dr. visits, etc.

Anyway, I finally had to stop working last year as my symptoms are now progressively worse. This is where I am now- Symptoms which include:

numbness and tingling in my feet, legs, arms and hands.

Dizziness, severe muscle tremors (mainly in legs), vomiting, hot flashes, night sweats, skin sensitivity, cognitive issues, seizure type activity, relentless, constant infections and now pain in my hips.

Has anyone out there experienced similiar symptoms after their initial onset and treatment of RMSF?

I had one doctor in a N.C Ivory tower hospital tell me I ws a stressed out female. I had another Dr. in a Nashville Ivory tower hospital tell me I must be depressed. HA! I am neither and spent $1000.00 out of my pocket for a neuro-psych exam just to prove them wrong..which I did. I am tired of being labeled because they do not have answers!

I was retested for the RMSF again last month, the titer came back positive. I have been tested for Lyme, Lupus and countless other diseases, all of these are negative. I had a nerve biopsy above my ankle and on my thigh which indicated extensive peripheral neuropathy damage. Fot the past 2 years I have had an elevated eosinophil count and elevated IGE level as well. Does anyone know if this can be a side effect of RMSF?

All the Dr's want to do is prescribe Doxy, other antibiotics and antidepressants..

Sorry to unload, I suppose this is all wearing me thin. Does anyone out there know of a really good specialist? I'm desperate.

Deb

Post edited by: d8383, at: 04/01/2009 18:25

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06/02/2009 03:41 PM
SusanB
Posts: 2
New Member

Hello,

It is amazing to me to hear other peoples stories about RMSF. I was diagnosed 3 years ago and my life has never been the same. It can be very discouraging. I have alot of sharp pains in my joints, headaches... and the list goes on, sorry to say. This is really the first time that I have googled support groups and all the personal stories almost made me cry because after awhile you start to think that maybe you are crazy.When you read that others are going through the exact same thing makes you feel so less alone. Im sorry that I dont have any recommendations about specialists. My infectious disease doctors just keeps telling me that" You have been treated" and all these things that I am dealing with could be "whats normal for you now" talk about depressing. Please know that I wish you all the best and hang in there. I am still working, in healthcare, and feel as if I can hardly take it anymore. well, thanks for listening and I wish you and everyone here all the best


08/01/2012 11:29 AM
Samdweed
Posts: 7
New Member

very similar situation here, and I am glad that you shared. In 2000 I almost died from what was then diagnosed as sepsis. I now think it was RMSF. I recently developed some of the symptoms you speak of. The blood turned up + for RMSF. That was the diagnosis until someone realized that it was an inactive virus, like yours. My problem started with extreme fatigue, then headaches, neck aches, nausea, shortness of breath. I had doxycycline 2x 10 days, no help at all. 3 trips to ER, 1 week in hospital. It's now been 13 weeks and I am still too sick to get through a day's work. I get up about 7, need to sleep around 11 and again around 4.

I am at a loss for treatment. I think "lingering" RMSF is not on the radar for the docs. I'm going to try some nutrition/supplement therapies. I am hoping that I can get my strength back enough to knock it down to where I can function. I have no idea if this is something that is permanent or not. It's uncharted territory and I hope to stay in touch with you to see what you have done, and I will do the same for you.


04/17/2013 02:25 PM
AmaruJ
Posts: 2
New Member

Hi Susan, I just wanted to say hello. All of these posts are making me rather emotional, its been a bad RMSF day. I was diagnosed 7 years ago and no, life is never the same. It is bittersweet hearing other stories and validating. Of course, you wouldnt wish this on anyone but it is comforting to know you are not alone. I am looking for a specialist or some case studies.. something, anything!

04/17/2013 07:27 PM
Flashtone
Flashtone  
Posts: 121
Member

Amaruj, its people like you that will help others. RMSF or rickettsa is very misunderstood . Its important for us to share experiences.

04/18/2013 08:25 AM
metalmouthjoe
 
Posts: 59
Member

first off , not the first one of us are crazy , this crap KILLS people every year , i flatlined twice since have been bitten by the rmsf bug in 08 , every one reactes to this in a different , an yes it is called practiceing med, night sweats, upset stomach , headachs . high blood pressure , brain fog, stiffness , fatigue, some sleep , no sleep , moody , or just plain PO, because doctors have no true way to fix it , i'm 55 an no longer work , all i do is take meds every six hours , and do the best i can with what i have , and thank god that i'm still here for my family , because they suffer more than i do i can see it in all of them , when i have realy bad days , my prayers go out to each and everyone of you guys , who fight this every min of the day

06/09/2013 05:40 AM
kimhouston
 
Posts: 1230
Member

D8383, I'm sorry for your struggles. I am not sure if I personally have rmsf, but I do have Lyme. I found this group BC my 5 year old has rmsf. I do have all of your symptoms and I wonder if you have been tested for lyme and co-infections?

Do you see a llmd?

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