JFB

@Pistol & @p8d my doctor decided to put me on plaquenil (yay!), which I started about 6.5 weeks ago. I’m currently taking 200mg 1xdaily but it seems like I could probably be taking more for my weight. Do you recall around what point you started noticing a difference with the medication? I keep reminding myself to be patient, but it’s hard not to feel desperate sometimes. It’s been about 19 months of the low grade fevers and other symptoms. I wish someone could figure me out!

@p8dthat's so interesting and a great idea! Definitely going to ask my doctor about it if I don't have any improvement with the current treatment. He did have me try colchicine while we were waiting for my genetic testing to come back in case it was FMF. It didn't work, but hopefully that means he'd be willing to try this. I have such a hard time comprehending how I've had these fevers daily for over a year - I feel like my thermostat is broken 😂. I really appreciate your help!

@p8dthank you so much for sharing your story! It’s crazy how long we have to keep advocating for ourselves before getting any real help. I went through pretty extensive autoimmune testing both with a rheumatologist here in Chicago (where I live), as well as a dual rheumatologist/infectious disease specialist at Cleveland Clinic that he referred me to to see if she could uncover anything. Most specialists were convinced I had an autoimmune disease after hearing my story and finding out that I’m also photosensitive & have Raynaud’s (onset of both of these was years before getting sick). Every time, my tests would come back clear and they were stumped. My Lyme testing was done by IGeneX, which showed I had positive IgM and IgG bands. I’m really hoping this treatment works, but will definitely go back to the rheum if I don’t see any progress. I’m so desperate to feel like myself again.

Were you able to find the cause or successfully treat the fevers? I’ve been struggling with low grade fevers, joint pain, fatigue, etc. since last January (2020). After seeing numerous specialists, I was diagnosed with Lyme disease in November, as well as POTS in January. My doctor believes Lyme is what caused POTS for me. Every day, I experience low-grade fevers typically in the 99.5-100.5 range. I’ve often joked that my thermostat is broken, but I’ve begun to wonder if my fevers were initially from Lyme and have persisted as a result of POTS. Like you, my temperature drops back to normal around bedtime and begins to rise as I start to go about my day. I have elevated DHEA-S, as well, so my adrenal function is currently being evaluated (PCOS has been ruled out for me). Interestingly, I also experience hot flashes with my fevers instead of chills. I appreciate any help or guidance you can offer!