I'm not after medical adviser despite feeling chronically ill for a while but I'm very curious about what people strictly observe here.
I'm very new to the possibility of Lyme and am wondering what the cornerstone studies are that substantiate Lyme persistence. I know that medicine does not currently acknowledge chronic Lyme as a legitimate diagnosis and am wondering why that's in error.
My Igenex report is attached. IgM, and fish etc. for bart and bab is negative. What is to be concluded from this report and why? I have been a hiker and climber living in NJ most of my life. Exposure is definitely high but I never found a bite.
I am currently bed bound and can barely go to the bathroom. Bad POTS, adrenaline, hot flashes, fatigue, internal tremor, unrefreshing sleep. Doxy is the only medicine that very slightly makes me feel better.
I recently tried a highly experimental course of daratumumab which has made me very much worse. I used to be able to sit up in bed and play games but now I cannot. It making me worse is steering me away from autoimmune disease which I suspected due to a new ANA 1:160 Speckled finding.
I have ~1000 mmp9, high vegf and il8 and my IgG2 is higher than IgG1 which may point to microbial involvement.
Curious what people think and why.
I was put on Lorazepam by my doctor for long covid, me/cfs subtype. I have what appears to be a particularly severe case. I only used about .75mg per day, at night.
On Feb. 9 and Mar. 2 I self administered doses of myeloma drug called daratumumab that's been experimentally used in autoimmune disease and me/cfs to some small scale success. Unfortunately, I had a very hard time with the 2nd dose and took about 1.5mg a day for 2 weeks. During this period I started developing severe internal tremor. I stopped loraz cold turkey 8 days ago. My internal tremors and stress response (hrv) are extremely intense.
I'm starting to wonder if a lot of my mecfs symptoms were interdose withdrawl in the first place as my symptoms would come in waves that I could never pin down to proper PEM. Due to my terrible timing I have no clue what caused what.
Any advice on what to do at this point? Is my dose too low to account for this?