When I first became ill and we realized that I was being exposed to mold and had an allergy as well, I thought ok so that is what is making me so sick.  I had no idea about molds and their byproduct, mycotoxins.  I learned that yes the mold can make you sick and cause allergic reactions but the mycotoxins are even worse.

Molds produce mycotoxins which are poisonous to our bodies, can cause multiple illnesses and death. In September 2002 I had my lymphocyte panel checked again.  My numbers were not good.  The mold mycotoxins were still very much attacking my body.  A urine Tricothecene test was ordered to determine what my level was.    The test revealed that my level was an 8.  The best being 0-1 and the worst being 18.  I was diagnosed as having mycotoxicosis referring to the poisoning from exposure to mycotoxins.  The mycotoxins can potentially cause acute and chronic health effects including weakened immune systems  from ingestion, skin contact and inhalation.

Two years later while on a return visit to the Environmental Health Center-Dallas, Dr. Rea told me about another test for mycotoxins using DNA testing on mucous and or tissue samples.  I became ill with a sinus infection while there and we collected mucous from the sinus and had it tested.  The machine detects DNA of molds and mycotoxins.  We were checking for Tricothecene since that was high in my urine.  The lowest detectable level of the machine is .02 ppb.  The level in my sinuses was quite high at 11.54 ppb.  Dr. Rea then suggested that I speak with the doctor doing this test about checking tissue of my ovaries taken during my hysterectomy in 2003.

As soon as I returned home I contacted the hospital in Dallas and requested that samples be sent to the Environmental Health Center for testing.  The report I got back was unbelievable.  The level of mycotoxins in my ovary was 125 ppb.  The sample had to be diluted because there was so much the machine couldn’t count it.  No wonder I was sick.  No wonder the count went down right after the hysterectomy and I became so sick from ridding my body too quickly of the mycotoxins.

Since that time my urine Tricothecene level has bounced back and forth.  It seems to be higher when my fungal sinus infections are bad because the fungus has taken over my sinuses.  The Tricothecenes are stuck in my cells (kind of like velcro is how it was explained to me) and periodically I am able to release them.

There are many different mycotoxins produced by different species of molds.


11 responses to “Mycotoxins

  1. Hope you feel better soon. Where were the high cncentrations of mold?

  2. I really have a better understanding of mycotoxins, thanks to your explanation. The Velcro analogy is excellent. Do you know how widespread and accepted effects of mycotoxins is among mainstream physicians? Have you seen any studies on Pub Med or Medscape?

    • Jennie

      I did a lot of research on molds and mycotoxins back when I was trying to find an attorney and prepare for court. Unfortunately, all those papers are in a box tucked away in the garage because I didn’t want to bring anything in to my place that I may have contaminated. Today I took a quick look on Pub Med and Medscape. I found more information on Pub Med, however, there is a lot of medical jargon in it that makes it hard to understand for most of us. I don’t think this is very well accepted among mainstream physicians. I have been lucky to have some that “get it” and my ENT is especially good at looking and working “outside the box” when it comes to my treatment. Since my illness he has actually had a couple of other patients with similar issues and he has even asked me some questions about tests I have done, etc. He knows that I am not the “norm” and therefore doesn’t treat me as the “norm”. He was the one who first found Dr. Marinkovich for me (who unfortunately for me and many other mold sufferers passed a few years ago) and also sent me to Dr. Rea and did research on my current LDA treatment.

      Of course, then you have the mainstream “board certified” allergy and immunologists. I was sent to one by workers’ comp because they didn’t feel what I was doing was the right treatment. When I mentioned to him I was there because of my mold exposure he kind of gave me this look and said, “Oh, I know why you are here.” When I then mentioned mycotoxins he asked me, “Do you really know what they are?” I think he was surprised when I had an answer and could quote the labs I had had done to prove I had been exposed and that they had made it into my tissues and organs. He quickly diverted the subject to allergies and his treatment. Basically, if I wanted to get well and be able to go into malls, etc. I needed to do his traditional allergy treatments.

      Dr. Croft explained the velcro analogy to me and did my first set of tests. Dr. Rea was the first to state that because my urine tricothecene numbers kept going up and down (especially high during one of my many sinus infections), that they must be stored in my cells and released periodically. Dr. Croft agreed with him.

      I wish more mainstream doctors were aware of the symptoms of mold and mycotoxin exposure. What worries me most is that many of our environmental doctors are not young and what happens when they are no longer around to help us. Many symptoms and reactions among mold sufferers are similar and others are as varied as the individual. As I wrote before no two environmental or multiple chemical sufferers are the same. We all experience different symptoms and varying degrees of sensitivity. While some of my symptoms during an exposure to mold and chemicals are the same, there are certain differences that let me know if it is mold. One symptom I have failed to mention so far in my talks is EMF (electromagnetic sensitivity). I know this can be caused by mold exposure and extreme chemical exposure, including pesticides. At some point I would like to have someone guest post about it on this blog. While I am familiar with it, I have not experienced the painful reactions and isolation that this causes and could not do the topic justice.

  3. Yes, I agree with Jennie, I always fall short of trying to get the point across that I have more than one illness due to my mold exposure…your explaination here is excellent….of course…we only get through to the people who do believe toxic mold is harmful…to those that don’t believe that….I am just crazy….and its all in my head no matter how hard I try to explain or show my actual medical records to… husband and I are often heard telling each other after one of my asthma attacks or my RA gets worse….we just chuckle and tell each other “it’s all in your head”….but inside our hearts we are not laughing but bleeding….

    • Patricia

      It is difficult to explain these things to others, especially the ones who don’t want to know and believe mold and its byproduct mycotoxin can cause anything other than some allergy symptoms like a stuffy nose and sneezing. I have heard people say that they have been told by the medical profession, friends, and worse yet family that it is all in their head. When I first met my attorney and he was deciding on my qualified medical examiner he said that I would need to see a psychiatrist because I was certainly going to be sent to one by the defense. When I went to all the defense appointments their reports stated things like somatoform disorder. They stated that there was no proof of my illness or allergy to mold (I am sure they never looked at all my multitude of tests confirming this – some of the tests were mainstream). Yes, we can laugh about it and joke about it, but deep down it hurts. When I was awarded my workers’ compensation case I thought “at last” I had been vindicated. But now I am dealing with constantly having to fight for my treatments.

      In the beginning I was asked if there was a pill I could take (if only it were that simple). When I returned from Dallas I was asked, “Did they find out what is wrong?” Of course they did. I knew a lot of what was wrong before I went there. But the simple answer is that there is no simple remedy or cure. I have worked long and hard to get to where I am and I am far from where I was.

      A friend of mine reads my posts through her linked in page. She sent me an email. I would like to post it here in the reply section. I am waiting approval from her.

  4. In my reply to Patricia I mentioned that I wanted to post from an email I had received in response to the subject of mycotoxins. I received permission to copy and paste the email here. This woman has become a friend and is a fellow mold sufferer. We first met on a support group for those suffering from aspergillus and began talking occassionally over the phone. When I went to Dallas, even though we had never met and hadn’t known each other long, she regularly called to check in on me. Thank you.

    Your writing on mycotoxins causes me to question why the effects of mycotoxins isn’t a part of treatment in mainstream medicine. It seems to me to need to be general knowledge. Why is there such a separation of treatment between mainstream medicine and environmental medicine? Why such a resistance by mainstream medical treatment to recognizing the work in environmental medicine?

    The part of your writing seems to me to be one of the most important parts of your book. When I have explained how mycotoxins work to others in terms of what happened to me, it seems very difficult for the average person to understand. Also, many feel that this is only a very temporary kind of assault on the body. In other words, one should experience recovery rather quickly.

    In a future post I will discuss mold spores, mycotoxins and cross contamination.

  5. I do not know what to do next. I was exposed to toxic black mold in my workplace. There are only two of us in the office and both of us have been inhaling spores for 4 years. At first, we did not know what was wrong and went to many doctors. I had palpitations and tachycardia when standing, chest pain, shortness of breath, skin rashes and many other symptoms. Then, finally, mold was found. I can no longer go to work as I am so sick and my doctor says I cannot be in that environment even though they seem to think the mold is somewhat remediated. How can I get better? Also, does anyone know where I can get treatment? I live in Massachusetts and have found my insurance will not cover most of the doctors that know how to treat mold. Also, has anyone found a good attorney that knows about mold and can help us fight our case?

    • I can ask around among my friends and fellow mold survivors about doctors in your area. You need a good workers’ compensation attorney. I live in CA so I am not familiar with any in your part of the country. Many mold survivors when in the early stages have felt that cholestyramine helps (note that I am not a doctor and am not recommending any treatment). However, there are also many mold survivors who cannot tolerate the cholestyramine. Have you tried seeing a toxicologist to start?

      The sad thing is that if you were exposed to mold and mycotoxins at work, you have most likely cross-contaminated your home through your clothing and belongings that went back and forth between your home and your work. Do you know what molds you were exposed to? Have you been tested?

  6. To Kathy’s follower in MA who raised questions about where to go for treatment, the Mecca of environmental treatment is Dr. Rea’s clinic in Dallas, TX. The Environmental Health Center-Dallas has treated thousands of people sickened by mold, pesticides, and other chemicals. Kathy has written about her treatment at the clinic, and so have I. If you cannot travel to Dallas, you can check out the website of the American Academy of Environmental Medicine. There is a state directory of doctors who practice environmental medicine.

    Dealing with environmental illness is not easy. In coming to Kathy’s blog, however, you have found a great resource. Kathy has a book coming out, and that will provide a great source of information about how she coped after mold exposure. Having read parts of it, I recommend it highly.

    Jennie Sherwin

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