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In her recent post, Liz Ward wrote:

> I found the implication that treating a parasitic infection could cure a
> true intolerance of gluten such as coeliac disease particularly disturbing.

Perhaps Liz should reread my letter.  I did not imply by any means that
true biopsied, *diagnosed* celiac could be "cured" by treating
parasites.  I made it very clear that I was trying to reach those
individuals who had not received a diagnosis and who continued to have
intestinal and psychological symptoms even after months of being
gluten-free.  I simply stated that those who *were* diagnosed might be
more succeptable to the infections given due to a compromised immune
system.  I didn't suggest that the gluten intolerance these individuals
experience is anything but a Celiac, which we all know is a legitimate
autoimmune disorder. Also, you seem to be implying that non-celiac
gluten-inolerance is somehow less severe a reaction that the Celiac
version.  My best friend is a diagnosed celiac and I can assure you that
this is not the case.  Our symptoms were identical.

> It is not true to say that medical tests for parasites are not reliable.

That you feel comfortable regurgiting what you learned in a single
textbook after a single course (not that you are sharing it but that you
are asserting it as fact) when you clearly have no first hand experience
with folks who have suffered from this is just as worrisome to me.  I've
Most of the people I've met or known who finally got a diagnosis for
parasites and recovered after years of suffering thanks to an
antiparasitic program initially got a negative lab reading for their
parasite tests. The first thing most reputable medical people tell me is
that it probably won't show up on the test. My test too came back
negative but when I showed my doctor what I had collected in alcohol he
cringed and said there was no question that they were parasites and that
I needed to send off that bottle in order to assure the positive
results.  The lab who gave me the negative result was one of the most
reputable in the country. My doctor is one of the most respected
alternative M.D.'s in the country. He said that the tests often don't
pick up the parasitic infection and nearly every other source I've found
confirms this.

I am very dismayed, in turn, by folks like you who would rather err on
the side of caution and to deny folks the right to share information
that might send somebody down the road they need to take to heal
themselves.  I gave doctors 31 years to find one thing wrong with me and
they couldn't find a thing.  In one year I found not only the true
source of my suffering, but also found five different related disorders
(oportunistic infections etc..), which were later confirmed, which
everone else missed!  Until medical doctors start finding the true
source of what ails us, until they stop referring to us, as one woman
told me, as "the mystery patient[s]" I think it's up to the rest of us
to spread the word and share information that we feel is not available
to us through the usual channels.  You insult every one of us who have
tested neg. for the traditional "safe" diagnosis when you imply that
everything that ails us has a name and that there is not cross-over
symptoms and not room for misdiagnosis or error. You obviously haven't
suffered in the manner that many of us on the list have suffered, you
haven't spent years in limbo, feeling your life-force drain out of you,
you haven't lost you family your business, you haven't watched your
hopes and dreams disintigrate before you.  You haven't been told time
and time again by doctors, "I don't know what to do for you" or even
worse, been made to feel that you are actually mentally ill because it's
easier than "I don't know". People who have been to this place
understand what I am talking about.  They don't have the luxury of blind
faith. They feel so ignored and helpless and hopeless.  They have a
right to this information and I have a right to share it with them.
You clearly have not been to that place. When you apologize for spending
so much time on a "non-CD topic" you are doing the medical equivalent of
kicking the homeless out of your house.  Strangely enough, you never
know when you will need that homeless person, what wisdom they might
have to share with you that might one day save your life, or the life of
someone you love.

I stated that I was not a medical professional, that I was just sharing
what worked for me.  I am always baffled by folks who can't stand the
idea that everything doesn't always fit into prescribed categories,
frightened by the suggestion that there might be more out there, and how
can there not be with all the medical "I don't knows" we hear so often
these days. If we were all that rigid and fearful the world would be
still be flat.

I have received almost 60 letters from people who "have been feeling ill
since their trip overseas" etc...thanking me for bringing this to their
attention.  No, I'm not a rocket scientist and I don't claim to be one,
but this week I might have helped to end years of suffering of a few
dozen people.

How much suffering has your blind faith and rigid allegiance to Western
Medicine ended this week?

I will suffer all the criticism and disdain that Western Medicine can
dish out if what I have learned, what I have to share, can answer for
just one of those "I don't knows."

I am going to include part of a letter I wrote this week to one of the
respondants to my letter because I think it's relevant to this
discussion and I think it's important for people to hear.
____________________________
...I finally
decided out of desperation -- to save my very life -- to take matters
into my own hands and I starting researching on the internet.  We are
all raised to believe the doctor knows best and we forget that they have
hundreds of patients and will never be able to give us the attention and
do the research on our cases that we can do ourselves.  I've learned to
listen to my own gut, to keep symptom journals.  My intincts have always
been right on and time and time again I have ignored them. It's been a
year since I started researching the mercury poisoning and I'm just now
learning to accept that part of taking matters into your own hands is
developing a thick skin.  I've been laughed at by doctors more times
than I could list, been told I was "just depressed", needed a shrink,
and -- my favorite -- that my attempts to inform myself just weren't
"normal."  Thank God I wasn't "normal", or I surely wouldn't have
survived to see 32.

I think also that so many of us get one diagnosis and assume that we've
reached the promise land, when in fact, when one thing is off-kilter in
the body, so many other things wrong, or something else entirely can be
at the root of the situation.  I started off thinking I was mentally
ill, then discovered the mercury toxicity, then figured out the gluten
intolerance and thought THAT was the root of the problem, now I find out
about the parasites that actually caused my gluten
intolerance...(parasites set up shop from weakened immune system from
mercury in the teeth)...it's endless.  I think this is the last piece of
the puzzle.  I hope.
________________

And to the Celiac group.  My apologies.  One member of the group brought
to my attention that the tapeworm is not easily transmissable, that it
needs an intermediate host, like a flea (carrying the egg, I believe) to
move from indiv. to individual.  I looked it up again and realized that
that is indeed correct.  It is actually the Nematoda group of parasites
that are easily transmitted, especially by children.  These include
pinworms, hookworms and roundworms. These vary in size from .2 to 35
centimeters.

Take care people, and thanks to all for the kind letters.

Jennifer in San Diego