Re: Digest Number 699

[Guest guest]

Cheryl,

Have you looked into detox programs for pesticides, etc.? Sauna detox has

been used for firefighters and others exposed to chemicals, etc. I read

about this years ago when I first became ill, but just didn't have the

energy or money to do anything about it. There are a couple of places

that I know of where it is medically supervised and they get good

results. One is a place called the Environmental Health Center, a Dr.

Rea runs it in Dallas. He was a surgeon who became chemically

senstive form the OR chemicals. Lynn LAwson, a medical writer, wrote a

book about her experience detoxing in a unit like this. Her book,

Staying Well in a Toxic World, tells her story as well as shares all of

her research on chemical sensitivity and treatment. I think it is her

book in which she tells the story of kids who drank milk that had been

contaminated with PCB's or DDT(?). They went to a detox unit and were

able to return to a relatively normal life. Doris Rapp MD is another

person who has taken up the cause and writes and speaks out about the

serious health problems related to chemical use in the schools - new

rugs, floor cleaning and polishing, disinfectants, mold, poor air

quality, etc.

When I moved to FL years ago ,I experienced " tremors " from the spraying

of my apartment. A scientist friend of mine explained that that is how

the pesticide kills the bugs, it affects their nervous systems.

Good luck with your son.

M-

Digest Number 699

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[Guest guest]

I originally sent this message to Doug Haney, but he hasn't answered

(perhaps he is out of town), so I am sending this to the group:

After testing our house for Mold we found higher than normal levels of

Penicilium and Aspergillus. Sure enough, the MAST test I received by Dr.

Marinkovich revealed high antibody levels to Penicillium and Aspergillus.

For the first time in 9 months I had a blood test that actually points to a

possible (likely?) diagnosis!! I am still so skeptical having been to so

many doctors and having been mis-diagnosed numerous times, but this time I

am hopeful. I do have a number of questions though :

1. Dr. Marinkovich described what I had as " chronic serum sickness " . He said

it was a " normal reaction to an abnormal exposure " . Apparently it has

nothing to do with allergy (I guess I have no allergies). Would this then be

characterized as a fungal infection or hypersensitivity to mold or what? I

have a tough time explaining it to family and friends.

2. Why me? Any idea why it would affect me and not my wife and children?

Does it necessarily indicate that my immune system was somehow previously

compromised and that's why I was so susceptible?

3. Is there any way to get a feel for how long I will be affected? I lived

in this house for about 6 months before I became ill and now have lived

here for a total of 15 months. There was no Stachybotrys, just Penicilium

and Aspergillus. Is there any way to tell (now that I am on Sporanox and

Nizoral) how long before I can expect to feel better? Dr. Marinkovich said

he thought I'd start feeling better in about 2 weeks. What do you think?

4. Our house was tested by an (expensive) firm called " Restoration

Consultants " . How do know where the source of our mold is? We suspect our

carpets, We know it's damp in our living room. We're getting some drainage

work done for our crawlspace and putting down some plastic sheeting etc. But

my concern is that we'll do all this work and there will still be mold. How

do we know for sure? And how can we test the levels without having to spend

$2-3 grand each time?

5. Dr. Marinkovich also gave me alist of foods containing mold. How

important is diet in all of this? Should I really strive to eliminate all

molds (cheese, brad etc. ), or is it just something to be aware of and not

to overdo?

Thanks in advance for taking the time to answer these questions.

---

Rich

Hey Rich;

The molds that you mentioned do the same things to a lot of people. My

wife and I have similar symptoms, yet at times hers are more sever than

mine. We attribute this to her extended exposure. She was in it 24/7;

whereas I was in it outside of 10 hour work days 5 days a week. As to the

many responses from the Dr. types, we chalk this up to the ego that many of

them have. (Let's face it, it takes a lot of self esteem to get through med

school). Then for them to have to face the fact that in that period some

medical problems weren't answered, well, some of those hot shots would

rather say that the problem is psychosomatic or " stress related " . We've

been there and had that!

Also mentioned by Cherry (herself a pharmacist and dental hygienist) to

me is the time that it takes for the medical field to suspect, investigate,

confirm, accept, publish, and then educate emerging diseases can take

decades! She told me tonight how some 98 year old guy was being interviewed

about the most impacting achievements in his lifetime, and his response was

" air conditioning " ! Yeah, he does live in Hotlanta, Ga., but think about

it. This society has only been dealing with sealed environments as

permanent living/working spaces for about 40 years now. I graduated from

high school in '76 and never had the benefit of climate control in my public

school in West Palm Beach, Fl. We had fans blowing in the windows for

that.

I wonder if in 10 or 20 years the Dr. types will look back at this

period and this group of mold sufferers and say, " those poor schleps! if

only we'd done this they wouldn't have had to suffer from bloody noses,

constant diaghrea, the itch from hell, sores that never heal, and that

terrible brain fog! "

As for us, we're spending about $200 every week for supplements that

seem to be helping us. Our health insurance laughed when asked if it was

covered. If the meds that Dr. Marinkovich prescribed for you do work in a

couple of weeks, let us know! Personally, I'd eat a steamin' cow pie if I

knew that I'd get better in 2 weeks! (we've been tormented since 7/97).

What are your symptoms? (go to the archives for " our story " to get a

full detailing of ours for comparison)

As to the construction defects, you've got to fix the water problems!

We found that when we had the house remediated, we got rid of some of the

viable mold, but not the spores that were making us sicker by the day. We

abandoned the house about 2 years later. We're still making mortgage

payments on it so as to not lose the property that we owned before having

had the house built. Future plans involve a bulldozer.

As to mold avoidance; yeah, I try as hard as I can to avoid it. I hope

and pray that the day comes when all of us can't tell if we have or have not

been exposed to any type or concentration of mold!

Sincerely,

Haughton

[Guest guest]

Hi Helen..hope you are feeling better! i wouldnt worry too much about not

getting the flu shot..from what i've read about them...they are not all that

they are cracked up to be...because they apparently have formaldehede and

mercury in them as well as a form of

aluminum...all of which are toxic to the body and if a person all ready has low

immunity...it's hard on the body..best thing is to build up the immunity to be

strong and more resistant to germs/flu bugs going around. Also, how they decide

what flu shot to give people

a group of people sit together in a room, discuss what might be the next big bug

going around and design the shot from that...pure specualtion..really a strong

immunity is the best defense.

Sheena:)

[Guest guest]

RE changes with aspartame: I THINK side effects include headache, focusing

problems (inattentiveness) , hyperactivity, irritability---it's been a long

time since we discussed it.

Kate

[Guest guest]

I would like information on Carbone/Sundberg workshops in the Mid-Atlantic

region (Va, MD, WV, Pa, De, NC). We are just getting started and since one

seems to be a pre-requisite for the rest, I guess we need the first to

start off with. It seems that some of the locally sponsored meetings are

not listed on the web-site. My son is not non-verbal and has more than 100

words, so one of the meetings is not appropriate for us.

Naomi

[Guest guest]

In response to t Burk's note on SI issues and OT evaluation: You

*must* have an OT experienced in SI issues or you will be wasting your

money. I have been to both and the good one was worth it, and the one who

had 'read something on it' was a waste of time.

Naomi

[Guest guest]

Subject: Shy Surgery

Louise, Congrats on getting through the surgery. When my daughter came

home from the hospital, they said I could give her childrens Tylenol for

the pain. I think she had one dose and that was all she needed. She

will feel much better in a day or so. Hope all goes well with hookup!!

Mom of Sydney

N24 Sep. 1997

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[Guest guest]

Hi Trudy,

Thanks for all the clarifications. I guess I probably have mild

COPD, too, which would mean that there is a part of my breathing

obstruction that is simply not reversible anymore. But it doesn't

bother me so much and no one has ever said that I have COPD. It's

just I always, even on high doses of all medications, have at

least " mild obstruction. " Funny thing is my mom has emphysema and

they've supposedly told her she has ASTHMA. But it's so obviously

emphysema it's ridiculous.

Scares me a bit what you said about being hospitalized all throughout

two of your pregnancies. How long ago was that? Were you under

control with your symptoms before the pregnancies or not? I have to

find out if I can stay on the meds I am on if I get pregnant. I

think I can. I'm hoping that's true and then hopefully I'll be able

to keep my symptoms under control. I have always thought I'd have

two boys. So maybe I'll have a boy and they have an okay effect

on me. That is actually what the story is anyway, that when people

have girls their hormones are all screwed up and they feel awful, and

when they are " glowing " they're having a boy. I think it's an old

wives' tale, and yet, I've also seen it to be true with people I

know. But who knows what the statistics on that are. I'm talking

about in the general population, not Samter's patients, btw.

Oh, all my symptoms definitely get worse right before and during my

period. And if you put in some humid, high pressure weather in there

it's even MORE fun!

This may be too personal, so feel free to answer privately off list

or not at all, but what made you get pregnant six times if you were

SO sick during the pregnancies? I mean, what was behind your

decision to do so? Or were the girls last? Just curious. In many

ways I am so afraid of even getting pregnant once because of the

health issues. I have told my husband that if I get pregnant and we

have a healthy baby it will be once and only once for me and we'll

adopt if we want to have more. It seems it would be too risky for me

to try to get pregnant once as it is, that twice would be asking for

punishment. I love kids but I'm afraid of complications getting so

severe I wouldn't survive or the baby wouldn't survive or both.

So interested in your thoughts and decision behind that.

Thanks

Lori

[Guest guest]

Hi Trudy,

Scares me a bit what you said about being hospitalized all throughout

two of your pregnancies. How long ago was that? This may be too

personal, so feel free to answer privately off list or not at all,

but what made you get pregnant six times if you were SO sick during

the pregnancies?

Thanks Lori

Lori, I didn't get sick until I was preggers with my first daughter.

I had two boys before that and they were 18 months apart. I had

when I was 20 and when I was 22. I got pregnant with

Lacey when was 9 months old and started getting sick. I was told

not to have anymore babies after her. She was born when I was 23 and

was in perfect health. At that time I was a member of the Church of

Jesus Christ of Latter Day Saints. I hope this doesn't spark an off

topic religious debate! I believed my role was to provided bodies for

spirits to come to earth, and God would take care of me in doing so.

It came down to faith at that point in my life. I was young and

impressionable. When I got pregnant with I was medivaced to

Seattle (I lived in Kodiak) and spent most of my pregnancy being

monitored and medicated. My biggest worry was the prednisone I was

on. The doctors said being without oxygen was certain death for the

baby so the risks outweighed the side effects. I was 25 when she was

born she was and still is perfect! I stopped having babies at that

point even though I felt guilty. (Pressure from other members of

church.) I got pregnant with Dylan when I was 34 and using birth

control. My asthma cleared up immediately and I had never felt

better. I asked my doctor to find out what it was that caused that

effect and could it be manufactured. I honestly thought it might have

something to do with the production of testosterone boys make! When

Dylan was two I left the church and got a divorce (longer story than

this!), moved back to Michigan and started a new life. I was using

birth control and dating the same person for quite awhile when I got

preggers with Dallas. I was 40. My asthma cleared up completely again

and still nobody could explain why. I now am 46 and have an IUD until

I hit menopause. Trudy.