Patient Comments: Rocky Mountain Spotted Fever - Location

Question:

Please share your experience with RMSF, including the region in which you contracted it. Submit Your Comment

Comment from: NCRMSF, 35-44 Female (Patient) Published: November 18

I live in North Carolina. Four years ago at age 33 I had the first illness that had ever kept me in bed, the first time I ever called in sick to work. I had a fever about 102, abdominal pain that was severe, headaches, achy joints, no appetite, and trouble thinking of certain words. After 4 days I went to a doctor. I had no rash, and had not been camping. Thankfully my doctor took it seriously and did a blood count and sent tests for Rocky Mountain spotted fever (RMSF) and Lyme. My platelets, white blood cells and red blood cell counts were all low. My doctor called a hematologist, concerned about cancer and the hematologist said it was consistent with RMSF and to go ahead and treat while we waited on the final blood tests which took a week or so. I took doxycycline for 2 weeks. I started feeling mostly better within 2 days, but still had fatigue and had trouble finding words and focusing for about 2 months, then seemed to be getting nearly back to normal. Then the next time I got a simple cold, it seemed to take forever to go away. I used to never get sick and suddenly I was always sick and couldn't force myself to just keep going like I'd always been able to do in the past. When I tried to exercise I got so tired. I started getting daily headaches. I searched for answers and kept finding things that said that with early treatment the RMSF is cured. I didn't feel cured and I was frustrated. Now 4 years out I am still frustrated and I feel like my fatigue, exercise capacity, headaches, focus, joint pain is just getting worse. I feel older than I am. I reached out to specialists on RMSF and it seems that there is no known treatment for these lingering problems. I have decided that I need to adjust my expectations of what I am able to do. I need more sleep, shorter and less aggressive exercise sessions, I try to eat very healthy. I am thankful that I was treated early and that I am here. I may have to adjust to my new normal, and need to remind myself that it could have been much worse.

Comment from: LMGRMSFWTF, 45-54 Female (Patient) Published: May 30

After several years of various illnesses (two flu/year after receiving flu shots), atrial fibrillation, bradycardia, virus, shingles, chronic fatigue, headaches, muscle weakness, difficulty concentrating, migraines, stomach problems, etc.), and multiple doctor visits (including specialists), I finally received a diagnosis of Rocky Mountain spotted fever (RMSF). I never had a rash and the last tick bite I remember was at least 4 years ago. I received one round (two weeks) of doxycycline treatment. I still have headaches, chronic fatigue, weakness and stomach problems a month after treatment. I asked about seeing an infectious disease specialist but was told they would give the same treatment. I"m being sent to an immunologist for testing now. The fatigue is the worst! My doctor said that even after a few months, her patients with the illness have said they are just starting to feel "a little bit better".

Comment from: Debbie, 45-54 Female (Patient) Published: July 15

I found a tick on my shoulder about a month ago went to the DR. to have it removed. I felt fine until a week ago...I thought I had vertigo or an inner ear infection. After a blood test they found I had RMSF. I am 500mg Amoxicilian..I started to feel better but now I am continually dizzy..which is a symptom I have not found for this on any web site!

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