Re: Sick Building Syndrome and Chronic Fatigue Syndrome

[Guest guest]

,

You are wrong about this list. I have TOTAL interest in your story. I do the mold avoidance as well but seems to be a slow process. I have started with a kinesiologist I was impressed by and am taking her homeopathic medicine. I believe as I know someone she treated that was with chemicals, not mold. She says I have a huge toxicity to heavy metals as well.

Anyway, I take GREAT interest and am glad to hear you are so successful at beating this. Not all of us are alike, and many have families and deal with other things as well. I STILL fight the government. My work place has decided to fire me so I will be on the street. Its hard to just focus on getting well with all this to deal with but I am trying and I read with great interest and admiration when I see your posts.

Janet

[Guest guest]

I'm a graduate of Truckee High School and a survivor of the 1985

Incline Village CFS epidemic described the book " Osler's Web " .

Dr Cheney told me that I was one of only 19 people that had been found

to be EBV negative so they used my blood to demonstrate that CFS was

not CEBV, so in effect, the parameters of CFS is in part based on me.

I never found any therapy that directly addressed my symptoms until I

came up with a strategy of extreme mycotoxin avoidance.

One of my first questions during the Incline Village epidemic was " Why

is mold killing me " but I was told that this was impossible so I

didn't pursue the " mycotoxin connection " until it became apparent that

no one was going research the role of mold in CFS or help me devise an

extreme avoidance protocol.

I proposed this concept when I was sick enough to be " at a point where

most people with CFS commit suicide " and was told that " mold avoidance

won't work and only Ampligen can help you " . I couldn't afford the

Ampligen and went ahead with my strategy of extreme avoidance. Within

six months I had resolved my MCS and CFS symptoms and celebrated my

recovery by climbing Mt Whitney.

I've been mountain climbing, backpacking and mountain biking ever

since with no relapses. I've told my story to hundreds of doctors,

researchers and people in support groups but so far, Dr Ritchie

Shoemaker is the only doctor who understands what I'm talking about.

I've even told my story on this list and had little to no interest.

I recently did a ten day backpacking trip up the Muir trail

camping at up to 12,000 ft altitude. Quite a difference from being

laid up in bed unable to move, and yet the only people who believe me

are those who were there when I proposed this concept and then used it

to recover.

I still don't know what causes CFS but I know that my strategy is the

only therapy that has allowed me to escape symptoms.

My experience is a spectacular demonstration of the mycotoxin

connection to CFS.

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[Guest guest]

Arizona is a long way from Maine....Jan

[Guest guest]

Yes please. I will end up woth half my pay. There goes my home, there goes my car,there goes doctors..Its the Government. I guess they can do anything they want as far as lying, covering up and dumping.Im a tech info specialist in the same code fpr 16 years with high clearance. I dont know what to find or look for. I have fought and fought to work at home but they wantt me gone as I am trying to tell the world and the BRAC Commission coming up.

Janet

[Guest guest]

I have been there since 16 years old. I dont know where to start a resume. I am pretty much housebound. Most buildings bother me as they are old.

[Guest guest]

Thank you . Did you send in your story to Congress?

I have my own theory of why people get sick from toxic mold so I

have been posting data which supports it. (Scientific data which

proves that toxic mold can cause: Alzheimer's, Parkinson's, Cancer,

MS, CFS..)

Reality is all sickness involves: toxic substance (environment),

genetics (DNA), and therefore the pineal gland which is right behind

your nose. So what happens when people are in a toxic mold

environment?? They get sick.

I do not know who Dr. Shoemaker is but if you would like to post a

website that would be great. I do know I had pages of abnormal blood

work (I did test positive for EBV), pages of abnormal neurological

work, also an abnormal MRI with a cyst in the quadrigeminal (sp?)

area.

I was on cholystramine for a while and took myself off of it because

it was not getting me better. From there I did my own research and

applied my own theories and used alternative medicine to get better.

I have also found a new appreciation for the outdoors. I would love

to go to Yosemite with a camera and hiking shoes and have a ball.

Mold survivors unite for positive changes.

[Guest guest]

Janet did you send in your story to Congress?

What do you mean you will be out on the street? Are you able to

work? Do you have a resume put together so you can find another job?

There are plently of online organizations which have job ads and you

could mail out your resume without even leaving your house. If you

are interested I can look through my notes and post a couple

websites for you.

[Guest guest]

Dr. Gray in Arizona is a mold specialist and he would believe you.

He is an excellent doctor and quite thorough. I will post a copy of

his paper.

[Guest guest]

At the top of a resume is education. Below it is your work

experience. You can also put special skills. Leadership, computer

skills, etc. Bullet points and lots of white space looks

professional.

I just did an online search and here are a couple places I pulled up:

http://www.flipdog.com

http://www.dice.com/

http://www.jobsbyresume.com/

Also try a temp agency.

[Guest guest]

I told my story to Congressman Filner only to find that he personally

knows people in this situation. He is concerned but so far we don't

have the science to back up our experience so there doesn't seem to be

a lot that can be done.

Ritchie Shoemaker is doing a presentation on markers for mycotoxin

exposure. Hopefully he'll be able to quantify what we can perceive.

www.chronicneurotoxins.com

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[Guest guest]

> Unfortunately you are mistaken about the availability

> of information. Other countries (i.e. Canada) already

> have procedures and allowable levels of mold

> (essentially anything that is present indoors that is

> not present outdoors at the same levels) is bad). The

> US just has way too many political interests that are

> against the writing of law and definite

> procedures/levels. So it is really a political

> problem, not a scientific problem.

If comparing indoor against outdoor spore counts is the state of the

science, I would say that they have major misconceptions about mold

exposure.

Mold at toxic levels indoors is still a toxic exposure outdoors.

Janet has said that she feels " mold from the earth " outdoors and feels

relief while INSIDE by running multiple Hepa filters.

That sounds like a pretty good description of a mold zone in which the

entire area is spore plumed and that her indoor relief is due to the

relative reduction in spore inhalation by the amount removed from

ambient levels by the filters.

I have experienced such mold zones and find that the advice and

understanding of mold by " IAQ experts " is insufficient to address my

reactivity.

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[Guest guest]

Air sampling is misleading.

As you say, we should be testing for VOC's.

If you DO get a result from air sampling it confirms the problem but

if you get a negative it rules out nothing.

I told Dr Marinkovich the results of tests I had done on myself by

wrapping up a contaminated object in a Hepa filter and placing it

below a pile of blankets and trying to sleep on it. I said that I had

demonstrated to my own satisfaction that it wasn't necessary to inhale

spores to get the response, that just inhalation of the VOC's was

enough. He told me about a housing project in Sweden that was full of

sick people but the airborne sampling found nothing. The mold was

found so tightly sealed inside the wall that no spores escaped.

He said " But this is only preliminary and hasn't been peer reviewed " .

In the years since then I have found many places that give me a VOC

response without significant spore contamination.

I'm not totally against air sampling but my own experience is that

it means so little as to be almost worthless.

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