Kane Protocol 2nd Dose - Guya AND my Shoemaker phone consult results

[Guest guest]

Gayu said:

Thanks for your answers. Do you think this lipid exchange protocol

will address the source of teh problem or it is a symptom management.

I did read in the Detox book that folks who didn't do the lipid

exchange at a maintenance dose of once a month did feel worse. So it

sounds like this is something to be done for a long time.

JS: Allow me to offer my perspective. It all depends on what is causing

neurotoxins as to whether removing them will largely solve the problem. If for

instance if a person had mold toxins recirculating throughout their body (sick

building syndrome) and they no longer live around any mold then maybe it could

do the trick, otherwise their continuing to stay inside a mold environment

would likely keep them ill and require continued treatment. Other things we

know

as of now that can be causing neurotoxin illness: coagulase negative staph

and lyme.

Question I have is can the oral protocol really substitute for the IV

maintenance? I hope this makes a big difference in all you guys trying it.

Shoemaker said in his phone consult last week that I had a biotoxin exposure

(mold) which made it likely I was to get CFS according to his analysis of HLA,

and so I might have to avoid mold the rest of my life. Avoid mold? I never

knew I had it! I don't know how much weight one can put on HLA but anyway my

treatment program is to do cholestyramine (csm), as what else can I do? From

my perspective, outside of coagulase negative staph and lyme and dealing with

the neurotoxins Shoemaker does not offer a very vast treatment program. Going

to Shoemaker largely revolves around finding out things that are wrong with

you and then treating them if possible (in the case of mold it is hard to treat

b/c it is hard to prove it is even in your environment, so the only big thing

you can do is hope to remove its toxins via csm). He offers a unique

perspective not offered by any other CFS doc and is a LLMD with tons of lyme

experience and a member of ILADS as well, and with his focus on cytokines and

neurotoxins, bacteria, lyme and mold, and genetic markers via HLA/PCR testing,

he

analyses patients in a manner unlike any mainstream CFS doc out there. If he

can't help heal you at least you are not financially raped and charged

exorbitant

phone consult fees. My BCBS did cover everything and they have not always

been so accomodating in the past (took me 9 months to finally clear up a bill

from a hospital for natural killer cell assay). said her BCBS did

not cover everything. I am not sure she has appealed and then appealed twice if

needed but that would be my advice: appeal until failure. Even if no big

results come from him I am glad I saw him and think he's about the most

brilliant

out there and has this uncanny ability to put together all these pieces and

correlations that I don't have a clue where he gets them. Like for instance,

during my office visit he had me put my arms out at length and stand tall and

he measured my finger tip to tip length against my height and said he finds

certain ratios to be more likely to have CFS. Oh, and good news, I do have coag

neg staph but it is the benign type (as determined by absense of multiple abx

resistance which would be the toxic forming type), so with that ruled out and

I guess he doesn't suspect me of having had lyme he puts emphasis on mold

according to my test results. I did have low MSH and VEGF: the worst possible

combination according to him, and he said my VEGF was about the lowest he had

ever seen and I had the CFS marker he looks for so for all those who wondered if

I was misdiagnosed all this time b/c I am working out, sorry but I probably

have more proof than any of you that I am a true CFSer. Oh well, at least I

know more about myself now. Guess we're just one large diverse club of CFSers

here and some of us have learned how to reduce the fatigue portion of our

illness, while others aren't so fortunate.

My results after being on csm for 26 days are subtle, not night and day. I

might add that I have noticed those in the lyme community many times get

awesome results from csm whereas non-lyme CFSers (probably like myself) get only

mediocre results. He seemed to imply that removing the neurotoxins via csm

could

result in rasing my VEGF and MSH. We'll see. Could be a while before I

return to see him.