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Old 02-18-2007, 11:37 AM #1
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Question Off topic, but may be relevant for some: Toxic black mold (stachy...) & other molds

Hi all!

I know a patient who needs help in finding an excellent mold specialist doctor, in St. Louis, MO (or elsewhere in or out of Missouri, if there are none in St. Louis, or in Missouri).

The lady was exposed to toxic black mold, called Stachy (short for stachybotyrus), and has developed many, many serious health problems, including neurological ones, such as DYSTONIA.

Does anyone here know of the following, that I could refer the lady to:

1) names & phone numbers of doctors who are mold experts, and who can advise patients on how (and by whom) mold samples from the contaminated workplace can be taken?

2) OSHA (government agency) people who are not "bought off" by industry, and who would take the mold samples, if they know how to do this?

3) lawyers/attorneys who take mold cases?

4) patient forums, where some of these questions can be answered? I didn't see anything here, about neurological effects of toxic molds...yet.

The lady has developed dystonias, in eyelids (blepharospasms...rapid, uncontollable spams, closing the eyes), and in the larynx (voice box), causing breathing problems, after working for a year in a very mold infested building. Her immune system is depressed, etc.

Thanks in advance!

I'll also be advising her to avoid gluten & milk products, etc., in case she also has food protein sensitivities.

Carol
http://cantbreathesuspectvcd.com
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Old 02-19-2007, 04:15 PM #2
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Hi Carol,

I'm sorry I don't have any info for you about the mold, but I just wanted to say hi!

Cara
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Old 02-23-2007, 06:11 AM #3
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I react to citric acid, and suspect that it is mold related.
(just google how they make that stuff)
On a IgG food panel (yorktest) the thing that stood out was reaction to yeast, no reaction to gliadin or wheat.....but I do react to gluten and wheat, I have nevrological symptoms beside bowel symptoms and burning sensation (DH?)

Someone posted something very intersting about mold etc on the celiac.com forum, in this thread http://www.glutenfreeforum.com/index...ic=27679&st=45
"Now we come to what to me is the most interesting of the recent research regarding celiac. It seems fitting that the research again comes from Holland , where celiac disease was first linked to diet. Dr. Nieuwenhuizen, from the research group TNO Nutrition and Food Research, published a paper in the June, 2003, Lancet. He links celiac disease with Candida albicans. Dr. Nieuwenhuizen, knowing the actual sequence of proteins which trigger celiac disease from the published work of other scientists, had searched the databases available to him through TNO to see if the same sequence existed in other places. It turns out the identical sequence of proteins occur in the cell walls of Candida albicans. [15]

These Candida gluten-like proteins turn out to be the yeast's "hypha-specific surface protein" nicknamed Hwp1. This is the yeast's version of Velcro and allows it to attach and hang onto the endomysium in the wall of the intestine. It is also targeted by transglutaminase, the enzyme which acts on the gluten protein and serves as a target for immune antibodies. Candida species which don't have this Hwp1 protein can't attach themselves to the digestive tract. [16]

If Candida can trigger the same chemical and immunological reactions as wheat gluten do we can imagine a number of interesting implications.
First, in people with celiac disease, symptoms usually get better rapidly when they eliminate gluten from their diet. This isn't always the case. Even without gluten some people continue to have symptoms. They may have intestinal Candidiasis. The Candida in their gut may be acting like gluten and continues triggering symptoms.
Second, an acute Candida infection may trigger the onset of celiac disease. Even if the Candida is treated and eliminated, the person could be left with a permanent sensitivity to wheat gluten.
Candida infections occur frequently with antibiotic usage. In people genetically susceptible to celiac, extra caution should be exercised when using antibiotics to prevent Candida overgrowth.
Third, if wheat can cause neurological damage as in gluten ataxia, it is reasonable to assume that Candida could also do so by the same process. Reports of Candida infections causing neurological symptoms are not uncommon; now we have a possible explanation.
Fourth, if only a small portion of the people with gluten ataxia have gastrointestinal symptoms despite their severe damage elsewhere in their bodies, it is reasonable to assume that Candida could stimulate significant problems while producing slight or no digestive symptoms.

So what does all this mean? Here's my bottom line:
Celiac disease may be grossly under diagnosed. It should be ruled out in any chronic digestive condition even if the symptoms don't fit the classic picture. Celiac disease should also be ruled out in osteoporosis and in neurological problems, especially MS. Celiac disease should also be ruled out in Hashimoto's Disease and other thyroid abnormalities. Whenever Celiac disease is diagnosed, Candida infections should be tested for and treated aggressively. People of Irish descent are far more likely to get celiac disease than others and should be extra cautious to avoid Candida infections and treat them aggressively if they occur."
..
"Just a further thought... if you are sensitive to molds, you could be sensitive to foods that have a tendency to harbour mold as well. Common food sources of mold:

Cheese
Mushrooms
Vinegar and foods containing vinegar, such as salad dressing, catsup and pickles
Sour cream, sour milk and buttermilk
Beer and wine
Meat or fish more than 24 hours old
Sour breads, such as pumpernickel, and other food made with a lot of yeast
Sauerkraut
Pickled and smoked meats and fish
Dried fruits such as dates, prunes, figs and raisins

I have also heard that nuts (especially nut butters), fruit and grains can harbour mold spores.

Here is a link I found that talks about the various types of mold, and where they are found: http://www.oldwestport.com/allergy/mold_info.php

In addition, mold and mildew are found in many places in the home...you don't need a visible sign of mold growth for it to be around you (in fact, it's impossible to completely remove the spores from your home.) When I was diagnosed with mold and mildew allergies, it was recommended that I remove any house plants and aquariums from my home. Have a hard time doing it, though, because fish were the pets we chose to keep due to our dander allergies."

http://www.glutenfreeforum.com/index...howtopic=30711 see also the posting on xanthan gum, what it is made of...I would avoid it too.
Dr. Mercola also posts that corn is almost always infested with mold, and often peanuts are too.

nora

Last edited by northernlights; 02-23-2007 at 06:27 AM.
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Old 02-24-2007, 11:48 AM #4
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Smile Thanks for links between Candida & Celiac Disease!

Hi Cara!

Nora, thanks for that great post, linking Candida albicans to Celiac Disease, etc.! Great info and links!

Carol
http://cantbreathesuspectvcd.com
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Old 06-11-2012, 12:37 PM #5
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I think your lady friend is not that only one who suffered from black mold. I read somewhere else that as soon as a person moved out of the house, she started feeling herself much better. So, who knows, maybe she does not really need a doctor, but what she does need it to move out of her house for a while, or forever?
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Old 05-29-2013, 07:11 PM #6
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Default Similar thing happened to me in Dec. 2009

There was repetitive water damage in the walls of a coop apartment I purchased. I was on the ground floor. The board of Directors refused to fix the problem, even after I hired a Medical Mycologists to come in and test, where he found starchy, aspergillius, penicillium, all highly toxic mold. Although I couldnt see the mold, there was no doubt it was effecting me. I had a urine sample done via Realtime Labs in Dallas, they mailed me a kit, which was covered by insurance. I had extremely high levels of mycotoxins in my body. About a month later, more water damage, but this time wall opened up and I ended up in the emergency room. My skin, eyes, nose, ears, throat, lungs were on fire...I left the apartment but it didn't subside so I went to ER. I have never been the same since.

I began with skin issues, neurological issues, chronic fatigue, numbness in legs, hands, feet, short term memory issues, insomnia, severe joint inflammation, lung issues. My cats got sick also, but they recovered, I did not.

Fast forward, I was fortunate to find Dr. Ritchie Shoemaker in Maryland. He is now retired *admin edit* Via an HLA DR by PCR test, I tested positive for genes that make me unable to clear certain toxins from my body. When exposed to these toxins, they continue to circulate in my body, creating havoc in every area until they are removed. However, my body is now "primed" and hyper sensitive to even the smallest amount of toxic mold. A walk in the supermarket or post office for even 15 mins if it is water damaged and has toxic mold makes my body react. 25 percent of the population has this issue but it is often misdiagnosed. There are so many different symptoms and each person presents differently.

In Jan. 2013 I realized I was reacting to gluten. Then the list grew to include soy, and anything fermented.

Interestingly enough, one of the mold genes I tested positive for, DQ2, is also associated with gluten issues. I am now completely gluten, soy, and fermented food free. I was tested for celiac, but was already on a gluten free diet so the results were negative.

I feel much better now...not 100% but thanks to Dr. Shoemakers protocol and the aide of an acupuncturist, an organic/non GMO healthy diet, glutithion pushes introveniously, mold/gluten/soy/fermented food avoidance I am functioning again, can exercise (couldnt walk up a flight of stairs before), think clearly, no more joint inflammation, numbness gone, etc.

Through my research I have found that although I carry 3 genes that make me susceptible to certain mold toxins, something must trigger the reaction in my body, then all hell breaks loose with the body attacking itself. Had I not been exposed to such extreme levels of toxic mold, I may have lived my life symptom free. And maybe I never would have had gluten issues either.

I took the Board of Directors to court, but unfortunately there are no laws on a mold victims side. We settled, but only because I was about to give a major interview to expose the entire building, and because my medical bills were at $60,000. However, I was able to make the other tenants aware of the dangers that were dwelling in the walls.
*admin edit*
I wish her well, it is quite a journey but she can get better.

Last edited by Chemar; 05-29-2013 at 07:16 PM. Reason: NT Guidelines: NO linking or website redirects for new members
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Old 05-29-2013, 07:22 PM #7
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Default Hello

I am a missouri Girl. Mayo clinic sent me to Columbia University medical center... ( One Hospital drive) in Columbia. They have alot of doctors there that specialize in rare or orphan diseases. I would at least call and see if there is this kind of help there. The hospital is fantastic. It would be worth the phone call. The patient advocasy person, maybe able to direct you. I hope help can be found. This is a teaching hosptial that does research. ginnie
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Old 07-03-2013, 04:17 PM #8
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Default what kind of doctor did you get help from.

Quote:
Originally Posted by MoldWhoKnew View Post
There was repetitive water damage in the walls of a coop apartment I purchased. I was on the ground floor. The board of Directors refused to fix the problem, even after I hired a Medical Mycologists to come in and test, where he found starchy, aspergillius, penicillium, all highly toxic mold. Although I couldnt see the mold, there was no doubt it was effecting me. I had a urine sample done via Realtime Labs in Dallas, they mailed me a kit, which was covered by insurance. I had extremely high levels of mycotoxins in my body. About a month later, more water damage, but this time wall opened up and I ended up in the emergency room. My skin, eyes, nose, ears, throat, lungs were on fire...I left the apartment but it didn't subside so I went to ER. I have never been the same since.

I began with skin issues, neurological issues, chronic fatigue, numbness in legs, hands, feet, short term memory issues, insomnia, severe joint inflammation, lung issues. My cats got sick also, but they recovered, I did not.

Fast forward, I was fortunate to find Dr. Ritchie Shoemaker in Maryland. He is now retired *admin edit* Via an HLA DR by PCR test, I tested positive for genes that make me unable to clear certain toxins from my body. When exposed to these toxins, they continue to circulate in my body, creating havoc in every area until they are removed. However, my body is now "primed" and hyper sensitive to even the smallest amount of toxic mold. A walk in the supermarket or post office for even 15 mins if it is water damaged and has toxic mold makes my body react. 25 percent of the population has this issue but it is often misdiagnosed. There are so many different symptoms and each person presents differently.

In Jan. 2013 I realized I was reacting to gluten. Then the list grew to include soy, and anything fermented.

Interestingly enough, one of the mold genes I tested positive for, DQ2, is also associated with gluten issues. I am now completely gluten, soy, and fermented food free. I was tested for celiac, but was already on a gluten free diet so the results were negative.

I feel much better now...not 100% but thanks to Dr. Shoemakers protocol and the aide of an acupuncturist, an organic/non GMO healthy diet, glutithion pushes introveniously, mold/gluten/soy/fermented food avoidance I am functioning again, can exercise (couldnt walk up a flight of stairs before), think clearly, no more joint inflammation, numbness gone, etc.

Through my research I have found that although I carry 3 genes that make me susceptible to certain mold toxins, something must trigger the reaction in my body, then all hell breaks loose with the body attacking itself. Had I not been exposed to such extreme levels of toxic mold, I may have lived my life symptom free. And maybe I never would have had gluten issues either.

I took the Board of Directors to court, but unfortunately there are no laws on a mold victims side. We settled, but only because I was about to give a major interview to expose the entire building, and because my medical bills were at $60,000. However, I was able to make the other tenants aware of the dangers that were dwelling in the walls.
*admin edit*
I wish her well, it is quite a journey but she can get better.
What kind of doctor did you get help from. And what kind of test did you do to find out if you had mold sickness. I have symptoms, but don't know how to begin. I have also become very chemical sensitive. Did you have any issues with that. We did some home remodeling and the day they glues down granite countertops it felt like my head was swelling. Then had to have house treated for termites and that is when I started getting very sensitive. So then I started taking backward steps to try and figure out why my body is doing this. Had to have new AC put in our home and when they pulled down the return vents to all the rooms, almost all of them had mold on the back side. We bought the house new in 2000 and wonder i the years of this building is what did something to make re react to the glue and pesticides. I am bothered with headaches all the time. I can't even live in my own home, but my Mom's house isn't completely safe either.
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