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Re: Re: cfs/fms

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Hi Steph,

>

> The terms incurable or curable don't really apply to

> true CFS - at least

> not currently. Not enough is understood about the

> illness.

I assume the " real " one is where they haven't found

another real disease.

>

>

>

> I certainly did not mean to imply that having CFS is

> hopeless. Proactive

> and aggressive management of the illness is critical

> to success. If one

> rolls over and gives up, one really is in a bad

> spot. However, at this

> point, treating the illness is at the level of

> management and treatment

> of symptoms. Just as Baab stated - she tooks steps

> with her diet which

> resulted in a significant improvement. That is what

> I mean by

> " management " .

I consider the improvement and in fact disappearance

of the CFS to have indicated that I had realized that

I didn't have something called CFS but I had Celiac

Disease. It wasn't management.

> And finally, what was I trying to say regarding

> CFS-MS-pudendal nerve is

> quite simple: CFS impacts the central system. It is

> quite reasonable to

> postulate that vulvodynia and vestibulodynia could

> be triggered by that

> CNS impact.

Yes, however, Celiac Disease thoroughly and seriously

impacts the nervous system, central and peripheral and

could be the cause of vulvodynia and vestibulodynia.

It seems to me that one might accept the Disease that

causes fatique and Nervous System damage and that more

is known about (albeit not enough) than one that is

" not known much about " at least to the degree that one

would have a simple stool test at an accurate and well

informed lab to rule out gluten sensitivity. If that

is the problem it is mostly easily cured--fatique and

all the other effects of it without meds. If it has

gone untreated for too long one can find that she has

permanent nerve damage.

If interested in Neuropathy and Celiac Disease people

can google " Latov Neuropathy Celiac " and find many

articles about a Dr. Latov, neurologist, and the work

he has done in this area with others. He is at

Cornell.

Arline

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