Posted 4/29/2021 1:00 PM (GMT -6)
Hi there, I'm just starting to feel extreme shocked, disappointment, almost helplessness, after saw more experts in ME/CFS, LYME and VIRUSES.
I still think that my me / cfs is probably caused by an infection that has its pitfalls in testing, and that is causing all the cascade of my problems, so I tried to get more opinions on what treatment to approach at the moment.
What I know now from loooot of testings:
LYME - now positive only B. Miyamotoi in Phelix Phage test (Lyme treated with 5 treatments without any success, last with Disulfiram, after this are my Burdorferi, Sensu Stricto, Afzelii and Garinii negative)
EBV - more times titers on border, Lerner guides = negative, Montoya guides = positive, LTT positive, PCR negative
VZV - not rash, but high positive LTT, high IgG
HHV6 - high IgG
*Everything else is tested totally negative or I've never had it
And now what the doctors are saying:
- Klemann - B. Miyamotoi is 100% positive, when Phelix Phage is positive, want me on Mino + Azi + Disulfiram for more than 1 year.
- Teulieres - B. Miyamotoi is probably positive, need Malarone and Artemisin for it, but viruses looks like a main problem, when I had many Lyme treatments without success. He want me also on Valcyte and try SOT (supportive oligonucleotide therapy) for EBV.
- KDM - (as always) its Lyme, you need dr. Horowitzs Persister Protocol
It's scary. That means 5 doctors = 5 opinions, 50 doctors = 50 opinions....?
I'm tired of it, but I'll probably try Valcyte + SOT + Artesunate + Malarone, from the last money I have, otherwise I don't know what to do. I'm already complete bedridden last 1 year and hope die last.
If anyone comes to your mind, I will be happy for any support ;-)