- CASE FILE
I became sick April 2018. False positives for RMSF & Lyme. Chronic Migraines began. Diagnosed with SFN & POTS. Still looking for autoimmune
ABOUT THIS CASE FILE
I became very sick at the beginning of April 2018. Fever, body aches, nonstop headaches (I never had headaches before this), nausea/vomiting, tingling and burning feelings running up and down my body. Everything hurt. I tested negative for the flu twice and my doctor really didn’t know what was going. I kept returning to his office every few days with no improvement and worsening symptoms. On April 24th the doctor decided to test me for RMSF and Lyme disease just to rule them out. He also sent me to the ER for a CT scan because I was experiencing the worst headache I had every experienced up to that point (but boy they got so much worse). CT Scan was normal but the labs came back positive for RMSF and Lyme Disease. I got those results on May 1 2018 and I began doxycycline. Still running a fever every day I continued taking doxy for I believe 21 straight days. Still running a fever and barely able to walk from all the pain I was in, I returned to doctors and taken off doxycycline and put on Ceftin for 10 days. During that 10 days I finally stopped running a fever. Still felt horrible. The nonstop headaches were now turning into migraines. I was (and still am) having 3-5 migraines a week. To speed this along, I ended up testing positive for RMSF 2 more times (all of the positive results were IgM only), positive for Lyme (negative western blot) and had a weak positive for Lupus. I repeatedly asked my doctors if the positive test for RMSF could be a false positive and I was told no. I asked them why is it still IgM only? IgG antibodies should have shown up and I had taken enough doxycycline to kill a horse. There’s no way I still have plus it’s not chronic. They didn’t have any answers for me. I called doctors throughout the state of Alabama and they refused to see because they had not clue, didn’t treat RMSF patients, or just flat out didn’t return my call or my doctor’s calls. So with no answers I sought out experts in tick borne illnesses. I sent my records to Johns Hopkins and 11 days later they called me and wanted to see me the next day! I live in Alabama and that wasn’t possible so we scheduled the appointment for the following week. In the middle of December I boarded a plane and flew to Baltimore where I saw an infectious disease doctor at Johns Hopkins. He and a team of experts had already reviewed my medical records and he explained that I had some very interesting labs. He confirmed what I had been thinking, that I do not and did not have RMSF or Lyme disease. All those test were false positives. He told he thought that I had POTS and he also thought that an autoimmune disease was the reason for all my false positives. I flew home not with a diagnosis but with answers and direction of where to look.
In February I went to the Mayo Clinic and had more test than I name performed. Finally I tested negative for RMSF and I was still testing positive for Lyme disease and this time the Western Blot was positive for a new infection. I also showed signs or small fiber neuropathy. I tested negative for POTS but I was still taking beta blockers to get my extremely high rate down so that mess those results. I also tested positive for anticardiolipin antibodies. They told me have that rechecked in a few months. I had to leave the Mayo Clinic before I could finish any further testing but the doctors were sure that UAB could handle the additional testing I needed.
In May I finally was able to get into the autonomic neurologist at UAB. The Mayo Clinic had suggested testing for small fiber neuropathy and a paraneoplastic panel. After I explained to the doctor that during the tilt table test at the Mayo Clinic I was still on the beta blockers he decided to retest me but this time I’d be off the beta blockers a week prior to the test. The tilt table test results showed that I have POTS. It’s important to note that I was still having horrible migraines 3-5 days a week and a constant headache on days that I didn’t have a migraine. Along with all the horrible pain all over. Electric shocks and painful burning pains were running up and down my body. I had a skin biopsy and came back positive for Small Fiber Neuropathy. The paraneoplastic panel positive for achr ganglionic neuronal Ab. We’re still trying to figure out what that means. So far we’ve ruled out cancer. I was retested and I’m still positive for anticardiolipin antibodies.
So here I am with a diagnosis of Small Fiber Neuropathy (SNF), POTS and chronic migraines. I have no underlining disease that would cause SNF so my prognosis isn’t good. I’m young to have it and this disease just gets worse and worse and causes more and more serve pain all over my body. Not good news at all. All we can do is try to treat the pain but I’m told the treatments for pain are not very effective. If I had SFN because of an underlining disease such as diabetes, we could treat the diabetes and that would slow it down and help with the pain. But I don’t have an underlining cause so we can’t do anything to slow it down. I finally got a diagnosis that explains the tachycardia, POTS, nerve pains (shooting and burning pains, numbness, autonomic symptoms, exhausting fatigue and all the horrible pain I feel throughout my body) but doesn’t explain the migraines or all those crazy labs. But it’s a diagnosis with an extremely painful life ahead of me. I truly believe that I have some kind of autoimmune disease that’s causing all of this and we just haven’t figured it out it.
So I had my doctor refer to a doctor in Boston and I will be going there in November.