I'm going crazy when I see more LLMD! Absolutely different opinions of experts...

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 ;-)

cheers, Martin

If you haven’t treated Babesia before then maybe an antimalarial like Mepron or would be a good idea.
Then you could rule it out with 4 months of that.

there is some logic to trying to treat Babesia - just in case that has been there in the background all along

it is frustrating - there are as many opinions as "experts" for sure.

the real problem is that there is just so much that is as yet unknown - the "experts" are really more or less just people who have a partial picture and have developed their own view on what is going on to fill in the blanks.

the reality is that even if you knew with good certainty what organism or organisms you are dealing with - what treatment will work is still a matter of trial and error - with only some guideline of what may work or generally works for most - but there is no one size fits all treatment even for each organism.

the human variability element is also at work to a large degree in each patient - and in practice each of us seems to have a different constellation of symptoms and concomitant problems that may need to be addressed - eg immune issues, gut issues, hormone issues, detoxification issues etc etc.

even antibiotic absorption / blood levels seems to vary from 10x to 100x from person to person - acc to one of the most respected LLMD's ( Burrascano).

this just seems to be the way it is - the massive contrast to what we think the medical services industry can do for us vs this complex and variable picture is massive shock to most of us at some point.

the other angle i am pursuing that seems to hold some possible promise ( if everything else has been tried is immune modulation).
antibiotics have helped me to some degree - and antimicrobial herbs - but neither was a cure - and all of them knock me around significantly.
but there seems to be is a lot of evidence that immune dysregulation is the major causative factor in chronic Lyme disease. not that lime disease isn't real - but perhaps more that the infection itself combined with other factors results in an ongoing immune dysregulation that drives a lot of the symptoms:
gut issues, immune system problems, circulation issues, phycological issues, autonomic nervous system issues - like heart rate, sweating, hot and cold tolerance, fatigue, circadian rhythms, etc etc

some of the immune modulating herbs buhner advises have helped me over the long term - red sage, cordyceps, eleuthero, ch. skullcap, cats claw, kudzu root, Uncaria Rhynchophillia

i am now looking into using ivermectin for its immune modulating effects - there is a thread on here trying to gather all relevant info on its use in lyme - but its a little hard to find specifics - but it seems safe and inexpensive and a game changer for some in our position.

ps - yes - artemisinin is known to ramp up excretion very rapidly - to the point where after 8 days the blood concentrations drop to around 1/10th of day one concentrations.