I am not sure I am posting in the correct place, but here it is...I haven't been on this site for almost 5 years and did not do the protocol, because in part I sort of felt better on my own after a very bad flare that had me bedridden for months. I attributed it to a meticulous diet and supplements.
I still have autoimmune disease and 3 years ago developed MS type symptoms on the left side of my body. ALL tests were negative for MS, but whatever was happening on my left side was progressing so quickly that the neurologist gave me a 3 day pulse of steroids and then put me on Cortef for 6 months. I got a lot better and over that year all of the MS type symptoms retreated. I still had terrible back pain and spasms though, so we did more XRays and the doc told me I really didn't have AS anymore...very strange.
Fast forward to a this past February...after months of severe back pain and nighttime fever and sweats, malaise, fatigue my dry eyes came back and my saliva completely dried up. It was suspected I had Sjogren's, but I am sero negative. I was devastated and more uncomfortable than I can explain...I couldn't eat anything without choking and was so dry that all I could do was think about it. I went to UCSF and they did a lip biopsy which was positive for Sjogren's. I found a new rheumatologist in San Fran who ordered a MRI of my sacrum. She suspected Reactive Arthritis or AS for sure (my dad had it and I have the gene). I haven't seen her about it yet, but the MRI shows total fusion of the sacrum and inflammation.
AND...beginning in June I started having MS type symptoms again with weak left side symptoms, muscle spasms, facisulations, sensory issues. It wasn't too bad, but an annoyance so the neurologist decided I should do a 3 day pulse of Solumedrol. That happened this week, which brings me to the site again.
After the first pulse of steroids, I experienced fever and chills that night with profound fatigue. The next day I recovered but was fatigued and the same on the third, but by the end of the treatment I was beginning to have weird symptoms. That night my whole body felt like a giant parethesia and I was so weak that I couldn't walk or hold my head up. It is difficult to type this without fatigue of my hand. I am now light and sun sensitive, have burning ears, have extreme muscle fatigue and droppiness on the left side of my face and am sweating constantly. I have constant muscle rolling as well. I called my primary care and the neurologist and they said that the immune suppression probably provoked some kind of viral or bacterial response. SO my question is: Can massive steroids wake up Chlamydia and cause these kind of issues and if so, what to do next? My Rheumatologist gave me a prescription for doxycline at 20mg 2x per day and I may begin that now, but am worried about what is happening. The muscles in my head get fatigued when I talk!
Sorry so long...maybe someone has an idea?