Re: ish Dr. Claims to have Found Cure for ME (CFS)

[Guest guest]

Sounds like a re-hash of Urnovitz's work with chromosome 22.

http://www.i-sis.org.uk/DynamicGenomics.php

You'd think that a reproducible finding of re-segmented " voyager " RNA

expression would be good enough to induce serious research, but

history has proven that this is not the case.

One might even get the impression that the " Powers That Be " don't

really care too much about too much of anything or anybody.

-

[Guest guest]

Drowning people will latch onto anything that appears to float. [A

very valuable lesson from lifeguard training. They teach you to swim

underwater and sneak up on those drowning. If they can see you or

reach you, they'll pull you under with them.]

>

That's the really peculiar thing!

As told in Mold Warriors, I was so sick that Dr told

me " You are at a point where most people with CFS commit suicide "

and when I found out that I couldn't afford ampligen, I had nothing

left to try except this crazy mold avoidance scheme.

Within six months I was climbing Mt Whitney and my chemical

sensitivities abates as long as I didn't get re-exposed to mold.

I was so stunned and amazed that there was anything on this Earth

that I could do to stay alive and control my symtpoms so well that I

contacted hundreds of doctors, including most of the famous CFS

ones, went to support groups to tell my story and even wrote to

Congress - and nobody was interested.

At first I was actually worried about tellng people about this

because I thought I might wake up some morning to find thousands of

desperate CFSers on my front porch. It has been quite a shock to

find out that I can walk into any CFS support group and say " I am an

original Incline Village CFS survivor who proposed a bizarre

strategy while I was in Dr ampligen study/NIH CFS study

protocol and by leaving the program and following this mycotoxin

avoidance strategy I have spent the last seven years climbing

mountains instead of being incapacitated or dead. Is anybody

interested? "

And their answer, with the exception of Dr Shoemaker and

has been, " No " .

This entire experience has been surreal beyond belief, and one of

the more unexpected aspects is to find that if anyone really finds

something that helps, the information cannot be presented because

the consistent response is " I haven't heard about this before, so it

cannot be true " .

And if I say that I can produce proof of who I am and just show

people pictures of myself on top of a number of mountains, people

don't seem to think that this anomaly represents anything.

They say " Where is your literature backing you up? Where is your

PROOF? " I say, " A picture of me climbing mountains isn't enough

to get your interest? What do you want? A signed affidavit from

Dean Edell? "

I was debating someone who claims that CFS is a stress induced

illness in the British Medical Journal Rapid Responses and he

actually put my story in the bmj in an effort to say that my

recovery was due to my " belief " that mold was affecting me and that

I was a classic case of the Placebo effect.

So my story wound up in front of a fairly large audience and not one

person showed any interest.

It never ceases to amaze me that the sufferers I have found who are

simply blazing with mold contamination reject the concept so easily

and instead will spend their money on snake oil, and doctors who

have demonstrated over many years that they can help no one.

When this is all said and done, it is the unbelievable responses of

people to this problem even more than the phenomenon itself that

really needs investigation.

-

[Guest guest]

:

> :

> What did you do to make suck wonderfulprogress? Avoiding eposure and

> what else? Thanks Elie

Nothing else.

Nothing else I ever tried remotely compared with just maintaining an

extreme level of avoidance.

So that's what I do and will continue to do until somebody finds a

magic bullet.

I'm not holding my breathe waiting.

-

[Guest guest]

,

Are you the one who slept outside for awhile?

Barb

>>

> Nothing else.

>

> Nothing else I ever tried remotely compared with just maintaining an

> extreme level of avoidance.

> So that's what I do and will continue to do until somebody finds a

> magic bullet.

> I'm not holding my breathe waiting.

> -

[Guest guest]

> ,

> Are you the one who slept outside for awhile?

> Barb

Barb --

I'm sure that 's avoidance strategy involved sleeping outside, but

I have posted here about my spending almost 300 nights out last year

in a tent.

I have to agree with -- for me, nothing is as effective as

abosolute avoidance of indoor, potentiated molds. However, therapies

such as Cholestyramine can provide me a level of control and the

ability to live indoors, albiet not perfectly. While I feel that my

sabbatical was helpful in recovering immune function, I still am

obviously heavily and probably permanently affected, and need to take

CSM to be able to function in society.

However, the more I learn about how " society " is dealing with this

public health issue, the more attractive living in the desert appears.

This is the single most damaging evidence of the base motivations of

American Industry that I've ever seen. To have the Greater Good be

subject to such brazen influence as is being exerted by certain

corrupt legislators, insurance interests, and the building industry is

an absolute disgrace.

Things will certainly change when someone like the President or a

Governor is affected. Oh, wait....

Lee

[Guest guest]

,

I meant to congratulate you also for being a 'mold warrior'. I

thought you were in group but didn't see any posts for awhile so

thought I was confusing you with someone in another group. So, it was

you who I remember lived outside for awhile. I'm tempted sometimes to

do the same thing. I have a porch I could sleep on but did mold

testing on it and it was moldier than the rest of the house due to

materials that were used to build it that haven't held up to the

weather. Now it is under 'reconstruction' of sort, tearing out

affected materials until mold count is at least as low as outdoors. I

couldn't camp in backyard because it back up to heavy forest and there

are raccoons, occasionally wolves and foxes that I wouldn't want to

cozy up to at night. I did put a fresh air intake into the house

furnace which made a HUGE difference in how I felt but air is still

not outside fresh. I'm tempted to go bigger with intake but I'd have

to accept perhaps a huge heating and cooling bill unless built just

right.

Barb

--- In , " moldincolo " <jonathan1@a...>

> I have posted here about my spending almost 300 nights out last year

> in a tent.

>

>> Lee

[Guest guest]

Wolves? Where are you?

JLW

> ,

> I meant to congratulate you also for being a 'mold warrior'. I

> thought you were in group but didn't see any posts for awhile so

> thought I was confusing you with someone in another group. So, it was

> you who I remember lived outside for awhile. I'm tempted sometimes to

> do the same thing. I have a porch I could sleep on but did mold

> testing on it and it was moldier than the rest of the house due to

> materials that were used to build it that haven't held up to the

> weather. Now it is under 'reconstruction' of sort, tearing out

> affected materials until mold count is at least as low as outdoors. I

> couldn't camp in backyard because it back up to heavy forest and there

> are raccoons, occasionally wolves and foxes that I wouldn't want to

> cozy up to at night. I did put a fresh air intake into the house

> furnace which made a HUGE difference in how I felt but air is still

> not outside fresh. I'm tempted to go bigger with intake but I'd have

> to accept perhaps a huge heating and cooling bill unless built just

> right.

> Barb

>

> --- In , " moldincolo " <jonathan1@a...>

> > I have posted here about my spending almost 300 nights out last year

> > in a tent.

> >

> >> Lee

[Guest guest]

,

I don't know difference between wolves and foxes!! I live up in the

hills overlooking the Ohio River. The wooded area behind my house

goes a pretty deep and goes down a good distance to the River but

would be an hour or more to walk it I'm sure. My greataunt who was

staying here and fell asleep on a lounge chair in backyard said she

woke up to 'wolf/ or fox' (I don't remember what she called it) in

yard staring at her. She's a pretty smart lady so I'm taking her word

for it. Two weeks ago I had a deer resting in the backyard.

--- In , " moldincolo " <jonathan1@a...>

wrote:

> Wolves? Where are you?

>

> JLW