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Anyone know of someone DX with Rocky Mountain Spotted Fever and antiboitic treatments didn't work?


I was diagnosed last August and have been on several rounds of antibiotics but I am still sick. I get random infections that can't be explained. White count goes through the roof. Joint pain, extreme fatigue and am pretty much Dependant on pain medications to get through a day.This has been going on for quite some time now and nobody can find out exactly what's happening. The Infectious Disease MD was not interested in the RMSF, the neurologist found it but released me with oral antibiotics. I'm just not getting better. I had a good month and a 1/2 after having serious antibiotics (oral and IV) for about a month but I've gone back downhill since coming off them.
Thanks in advance for your help!

Thank you Ken..you provided great info.
I just don't know where to go next. I have seen 2 Rheumatologists and 1 infectious disease MD who said "I'm not too impressed with the RMSF" and just released me once the rest of my blood work came back Ok (Igg, Iga subclasses, HIV, etc)The 2nd ID MD would not even sch an appt for nearly 2 months so they were not worried about it either! The neuro who found it did 2 rounds of oral doxy and the IV antibiotics have been for the other Random infections that no one can explain..the scary thing is this all started about 3 years ago.I was perfectly healthy and actually on a dance team. I went from that to barley getting around and using a can to walk many days. I never saw a tick and my western blot comes back negative.The number (or level) on my RMSF test has not changed at all through either of the antibiotic rounds. Should it go down or "away" after treatment or will it always be there since I had it? Thanks so much!

I am troubled by what sounds like apathy by your doctors. If it were me, I would seek out a new doctor for a fresh start but continue on the medication.

RMSF has a very favorable cure and response rate if treatment, including proper removal of the infected tick, commences within 5 days or less of developing symptoms. The longer it goes beyond 5 days, the greater the probability of spreading and the worse the treatment response. Antibiotics such as doxycycline or tetracycline, are used to kill the infection.

Without prompt treatment, RMSF can progress rapidly and may cause serious illness. The infection spreads via the bloodstream and serious complications involving the joints, heart, lungs, kidneys, and central and peripheral nervous system can occur. Among these are:

Heart, lung or kidney failure
An infection of the membranes and fluid surrounding the brain and spinal cord (meningitis)
Brain damage
Problems with blood clotting
Shock
In a small percentage of cases, Rocky Mountain spotted fever causes death, usually because treatment is delayed or is never sought. This happens in under 2% of patients.
I show you all this just to emphasize the importance of your doctors taking this seriously and treating it aggressively. The degree of your suffering as described is unacceptable. Good luck.

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