Posted 1/26/2024 8:58 PM (GMT -5)
Hi all, long term late stage, and multiple Lyme infections here. First infected 2001, but not diagnosed until 2002. Then had an infected tick bite in chest 2017, and treated prophylactic doxy. Tested positive again 2019 and treated for acute infection, which was useless, and may have triggered ME/CFS or some crazy autoimmune reaction, I was very sick, and a lot of stress at the time too. Basically, I have been housebound now for 4 years and bedbound 2 of those years.
At the time, I did 6-8 months of Dr Rawls viral plan, a 6 month parasite cleanse, and have been treating full Buhner Lyme, bartonella, babesia, and mycoplasma protocols for over 2.5 years based on symptoms. The protocols are a lot, and I feel like it’s a full time job. Of course I have sub-zero stamina these days, and so everything feels like a lot, but the full protocols really are pretty intense. I also pay attention to diet, detox, and have a far infrared sauna, which I should use more, but does make me herx.
I was diagnosed fibromyalgia in 2019, basically at the same time I was triggering severe ME/CFS, which is still my biggest issue, particularly PEM. The fibromyalgia diagnosis was like lightbulb went off, and I knew I had been living with it for at least 10 years undiagnosed. I’ve gone from a severe ME state, to a more moderate state, but can still crash severely. It’s like Ive gone from about 10% functionality before Buhner, to about 20-30%, after years of treating with herbs and supplements.
Feeling stuck and like I’ve plateaued. Looking for some next step but limited to Medicare. I’m playing with the idea of taking the plunge. and finding an llmd, if I can find one that I can trust. I don’t have a lot of money and am very dubious of scammers, or spending a lot and not getting any better. I know it’s a gamble anyway given the boat I’m in, but recommendations or advice would be welcome. I live in central NY.