Re: PWC's toxic

[Guest guest]

I became much more chemically sensitive about a year and a half ago. This was

while other symptoms have been improving through various treatments. I went to

Hawaii for 2 weeks and felt great the whole time. I had forgotten how that

feels and now I hate to be back to the old way. One time while I was in Hawaii

we drove through the industrial area and started getting a sore throat and

feeling lousy, so we left and I was fine in 15 minutes.

I am ready to move because I think this place (Bay Area) makes me feel crummy.

But how do you tell for sure? Are there MCS specialists who can measure you and

tell you what to stay away from? I found out the auto plant near and upwind of

me is the worse polluter in the county. I have a list of pollutants they

produce, but I'm not sure which might be the problem.

I don't believe MCS is all my problem. I have constant viruses and bacterias.

But being by the chemicals sure makes me feel worse. What is the best book on

MCS?

Thanks

Doris

[Guest guest]

jason,

this is going to sound unscientific, but my friend Tony says any

time you change locations, you'll probably feel different, usually

better, because your bugs have just had a big change in environemnt,

oxygen, moisture, mold levels, etc. It takes them a little while to

adapt, get their footing so to speak, and then come back full force.

penny

> I talked to another CFSer who said every time he went on vacation

he felt

> normal. He visited Hawaii and felt so great he had to move

there. W/i 2 months

> all his symptoms came back. Don't know why this is.

>

>

> In a message dated 6/6/2004 12:29:42 PM Eastern Daylight Time,

> writes:

> I became much more chemically sensitive about a year and a half

ago. This

> was while other symptoms have been improving through various

treatments. I went

> to Hawaii for 2 weeks and felt great the whole time. I had

forgotten how

> that feels and now I hate to be back to the old way. One time

while I was in

> Hawaii we drove through the industrial area and started getting a

sore throat and

> feeling lousy, so we left and I was fine in 15 minutes.

>

>

>

[Guest guest]

I've heard this happens tp people with allegies (they develop new allergies to

whatever is around them). I don't know if it happens with MCS. That's why I

need to learn more.

By the way, I usually feel lousy on vacation due to the travel and not sleeping

at home, etc. So being on vacation wasn't the cause.

Thanks

Doris

----- Original Message -----

I talked to another CFSer who said every time he went on vacation he felt

normal. He visited Hawaii and felt so great he had to move there. W/i 2

months all his symptoms came back. Don't know why this is.

[Guest guest]

Hawaii is one of the places MCS patients tend to move to -- there must be

something about it, although an environmentalist I met who lived on the big

island told me the volcanic smog is actually quite bad in many parts of Hawaii.

Last summer, I spent ten days in a pristine nontoxic trailer in a campground

just east of the Berkshires in Massachusetts. This was a huge deal for me, as

though it is only 2 hours away from where I live now, I am unable to even

leave my house for the most part, and when I leave my house I can only travel a

couple of miles at most, not to the other side of town, not anywhere. I became

marooned in this city on the East Coast, because I literally cannot leave to

go anywhere else, and my family is elsewhere as are all of my friends now (not

that this matters -- I'm too sick to be around people anyway, and can barely

even have my PCA here). Amazingly, when I went to that campground, after

about 2 days I was able to drive in my car for 1/2 an hour to an hour at a time.

Normally, an hour-long trip would make me completely bedridden and dependent

on daily care for months or a year, which is why it has been inconceivable in

most years of my illness. My crashes are typically so long and hard and I'm

already so weak that I was completely blown away I didn't have the same

experience out there. In fact, I hardly crashed at all from those drives -- I

was

wiped out, but just for a night or a little into the next day. Not only that,

but I was able to read a whole book -- front to back -- which is something my

cognitive problems never allow me to do. My orthostatic intolerance symptoms,

which had been constant so that I could barely sit up, also instantly improved.

I couldn't believe how much better I was out there. Then I had to come

back, and though I was much stronger when I left, I did spend a long time

bedridden upon my return, and in fact was much sicker for a long time. But

slowly,

over the past year, I have been paying people to find me a house out there so

that I can move, and I will actually be moving in a couple of months. The

experience gave me more hope than anything else I have tried.

I know of 3 other CFIDS patients out there with whom I have corresponded for

several years. One of them has severe MCS as well as severe CFIDS, the second

had moderate to mild MCS as well as severe CFIDS, and the third does not have

MCS, just CFIDS. All three have improved out there, and they all attribute

it to the air quality. I would not have believed it had I not experienced it

myself. I do believe all CFIDS patients are " toxic, " even those without MCS

symptoms, and I think reducing the toxic load on the body can help. The one

CFIDS patient I know out there with severe MCS said her experience was the same

as mine. She lived in Boston before, and literally, within ten minutes of

arriving in W. Mass. her symptoms improved dramatically. It was so immediate,

and

it was like that with me. The reverse was also true. When I got reached the

city limits on my drive back, I thought I was going to die right there in the

car. I was hooked up to oxygen, so sick, lying in the back seat, not sure I

would make it. I was scared at how quickly I plunged into my typical severe

level of illness.

From what I know of those who have moved to W. Mass., though, I do believe if

one feels better in a place, one should move there if at all possible. I

know this doesn't work for everyone, but it works for some. Moving did more for

these people than any doctors or alternative medicine practitioners have done.

None of them are " well, " but all are better, and they are all very very glad

they made the move. I'm sure I will be glad too, once I have made my move.

I'll post updates.

Peggy

[Guest guest]

I moved many times and it didn't make much difference.

Except that I noticed a long term slight difference that correlated

to places I lived.

When I was sick to the point that Dr told me " You are at a

point where most people with CFS commit suicide " and that ampligen

could help me, I was thrilled until I found out there was no way I

could afford it.

I had nothing left to try except to determine what it was that had

made that slight difference and exploit it until some affordable

therapy comes along.

I figured out what it was.

And it has made ALL the difference.

I told all of you about it too.

And that has made NO difference.

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