Many of you living in the US have seen the commercial on mesothelioma. It talks about if you or a loved one was exposed to asbestos either directly or indirectly you could experience this form of cancer. It has taken years for asbestos and the damage it can cause to finally come to the forefront and for these cancers to show up.
When trying to explain cross contamination from mycotoxins and mold spores, I ask if the person I am talking to has seen this commercial. I explain that it is very similar. I was exposed to mold spores and mycotoxins where I worked. I wore those clothes home and sat on my furniture, walked on my carpet, lay down on my bed, sat in my car and those same spores were spread into the air as I walked around the room. Those aerosolized spores then were sucked in to my computer fan, my refrigerator fan, my air conditioning ducts and anything else that has a fan or takes in air. I was constantly being re-exposed at work and then through cross contamination in my home and car.
After getting the results from my urine tricothecene test, I was told that I needed to get rid of my things (clothes, computer, cloth furniture, papers). I was told this just as I was about to make my second trip to the Environmental Health Center-Dallas for testing and to have major surgery. I ordered new clothes and was told that until I left and something could be done with regard to my furniture that I could cover the furniture with sheets to help protect whatever new I had bought. I had no idea that I would be in Dallas for most of 2003. When I came home my husband had built me a new house using safe products, tile floors, etc. Before coming home I ordered new clothes again and would only come home with the clothes on my back and toss them and shower before coming into my house. I was determined not to cross-contaminate my safe place. I did not bring my computer, refrigerator, television, cloth furniture, papers or clothes. I literally started over.
When I tell those who have asked me questions or sought advice about such things that they need to basically start over, it is overwhelming and hard for them to comprehend. I remind them that they are just “things” and their health and recovery is more important than “things”. I understand their pain at getting rid of their belongings. I understand their fear of re-contamination. In my book I wrote:
On February 11, 2004, I wrote in my journal, “I hate this aspect of my life. It causes the paranoia. I am so afraid of re-infecting myself that I wonder: even if the allergies get more manageable, will I be able to go out anyway because of this fear of mold and mycotoxin? It has already taken so much of my life away.
I also wrote: I saw Rick toss out my old stuffed Scotty dog that I had had since I was very little. I saw him toss out my favorite old teddy bear. I saw him pack up old blankets, cloth Christmas decorations, baby clothes that belonged to the girls, baby clothes that were once worn by me. It was devastating!
This illness goes beyond the physical pain of reactions and extends to the raw emotions of getting rid of cherished belongings, being told you are crazy, being told environmental illness and multiple chemical sensitivity does not exist and of learning to deal with isolation and a new way of living.
allergictolifemybattle 
Wow…this brought back so much that I still have a hard time with myself. I have always been sentimental and it was especiallly the family keepsakes, not the “Stuff” that still brings a stab of pain in my soul when I think of those days of parting with all of them. Add that on top of losing our home, my job and then our financial security, then eventually even being homeless….and after all of these losses being told I was “crazy and a hypochondriak”….by family and friends. I still can’t comprehend how they think that I would part with any of what we’ve lost if I had a choice??? Lossing friends, family, personal belongings, home, and job was more than enough…let alone the slow steady loss of health these past 4 years….and I thought that it could not get any worse….then I had to give up eating grains, dairy and sugar….meaning my favorites….pizza, bread, cheese, and pop….I hope there is no more I have to give up ahead of me as I don’t have much left….but only mold exposure costs this much….yet no one believes us! I am so glad you wrote your book Kathy….maybe someday we will be taken as seriously as a person with mesoltheleoma or cancer!
I hope there isn’t much left for you to give up as well. At first I thought I should take pictures of everything that was being taken away. It seemed like a good idea but then I would have to see the pictures and be reminded over and over again of what was lost. I have my memories and call pull up a vision in my mind when I want to.
My tentative date for submitting my manuscript and photos is the end of September or early October. It is getting very close.
Any update on your book? Just stumbled across this blog. I’m also curious about few other things:
1) have you tried any mycotoxin-specific medical therapeutic trials (NOT the Questran-GI-binding stuff, but the IV Vit C, Glutathione-type approach)?
2) what doc(s) would you recommend for helping clarify/educate ignorant disability insurance companies that this exists? (In my case, issues are acute on chronic and progressive neuro-cognitive, fatigue, insomnia, musculoskeletal, endocrinopathies, blah blah blah). I was considering driving to NY to see a “mold expert” that’s apparently familiar with toxic encephalopathy….. But when briefly chatting with him on the phone, he said I’d have to be worked up from scratch because he questions the validity of urine mycotoxin tests (his doubt was not phased by the fact that I’ve had 31 over past 9 months, and every one has correlated perfectly with symptom timing, severity, evolution).
3) any leads on folks in construction industry that “get it,” and who know how to build a safe home?
Wish I would’ve seen your story 6 months ago, but possible that God’s plan was to have to struggle through and learn from scratch. We are just transitioning past few months into the realization that successful “mold remediation” doesn’t remove fiber-bound mycotoxins from carpet, linens, insulation, etc. In fact, stumbled on your thread when googling “Tricothecene neutralization.” (Researching detergent, soap, household cleaning options, based on a comment in a scientific research patent application abstract that sodium hydroxide, ie caustic lye, effectively neutralizes macrocyclic Tricothecene compounds. I have know idea if this is accurate since just found it at 3am, but I’ve heard that some soap/detergent products have a tinge of NaOH in them)
Anyway, thanks for putting your story out there.
PS. Couple pointers: don’t burn moldy firewood (even when camping outdoors….. Tricothecenes 30)……. And don’t get in a hot tub with a stinky cover (Tricothecenes 9.57……. AND we subsequently had the water itself tested, Tricotheces 42.6!)
I am hoping that my book will be available by this summer. I am working on the cover. I hope to have the photography done within the next couple of weeks and then send the photo off to be put in my cover design.
I take Vitamin C, Glutathione and Magnesium IV’s about every three weeks. I am also on antifungals because if I stop, my sinuses go crazy. I have been to see Dr. William Rea at the Environmental Health Center-Dallas and have also seen a toxicologist (part of my worker’s compensation case). I hear your story and sympathize with what you are going through. There is a urine DNA test that is accepted in the medical community. I know there are some books out there on building a safe home. My husband pretty much built my house himself as the main contractor. There are some things that I probably would have added or done differently (although I am safe in here) but time restraints (I was in Dallas while he was here in CA building it) and cost (not all of my treatments were covered by our insurance). I have never heard of sodium hydroxide for removing tricothecene compounds. Dr. William Croft has found that ammonia will kill the tricothecenes.
Thank you for telling us your story.
Hi there, it makes my so sad that you’ve gone throughout this. Poor ‘old stuffed Scotty’, your childhood toy; I suspect though, having a husband like Rick, could be a treasure worth his weight in gold. I suppose this cross-contamination is something I will have to look at as well… I found this book on Amazon, http://www.amazon.com/Mold-Warriors-Ritchie-C-Shoemaker/dp/0966553535/ref=pd_sim_b_4 Have you heard of it? I’m also thinking about buying Martin Pall’s Explaining Unexplained Illnesses, wondering what you think of that one too–you know, ‘the NO/ONOO- cycle’? Oh, and I bought How to Be Sick, as an ebook last week, because I found out about it here, on your blog. Thanks and take care.
Miche
How to Be Sick is a great book. I have read Mold Warriors. During some of my reactions I have had this feeling like an electric shock going through my head from ear to ear. Could never quite explain it. One of his patients mentions a very similar experience. It is good for understanding mold and mycotoxins. I am not familiar with NO/ONOO cycle but will check it out. I also have not read the book Explaining Unexplained Illnesses. I will look at it on Amazon.
You are so right about my husband. I am lucky to have him in my corner and doing so much for me that I cannot do.
Please let me know what you think about the books.
Dr Shoemaker explains the electrostatic shocks in his pre-Mold Warriors book, “Desperation Medicine.
http://cfsuntied.com/blog2/2012/05/21/cfsthe-mold-tour/
Desperation Medicine by Dr Ritchie Shoemaker
Gateway Press Inc.
Baltimore MD 2001
Lessons from Solving the Herxheimer
page 258
Two key facts seemed to provide a good starting point. First, as every biological researcher will tell you,
the STRUCTURE of an organic compound will usually determine its function.
Second, it soon became evident that although each of the toxins involved in the various neurotoxin-mediated illnesses is manunfactured by a different organism, the symptoms they cause are remarkably similar.
Looking more closely at the organic chemistry involved, I soon discovered that a particular part of the structure of the toxin-attack was always the same, regardless of the particular poison involved.
In every case, the toxin molecules worked by configuring themselves into three-dimensional rings of atoms that shared negatively charged atoms. It didn’t matter if the negative charge was shared by oxygen (dinoflagellates and fungi), nitrogen, (blue-green algae), or possibly sulfur (spirochetes).
In scientific terms, this toxic structure is known as a “molecular dipole” or “ion ring.”
The ion rings vary slightly in terms of overall molecular structure, based on the species that is synthesizing the toxin. In the case of the dinoflagellates, for example, you get a ring of six or seven oxygens, (a polycyclic ether)… whereas the blue-green algae (microcystis) have cyclic structure creating a ring of nitrogen atoms.
The fungal organisms, on the other hand, make a ring of oxygens from the carboxylic acid ether backbone of their molecules.
Regardless of the particular configuration, however, the bottom line result is always the same: each one of these toxin molecules holds the potential for creating an “ionic sink” containing their shared electrons at its central core.
This core developes a net negative electrical charge.
Thank you for sharing Erik. I have read Mold Warriors but not this particular book.
Hello your story is very interesting..Just discovered why my daughter and I are so sick we are living in a mold house and in process of moving……….this is devastating. I understand that cloth, paper ect…needs to be discarded but very unsure of the things that might be salvaged?????Please anyone with suggestions help!!!!!!!!!
Sadly this story is a familiar one. I kept my dishes, pots and pans, cutlery, and casserole dishes (basically my glass things). I kept my kitchen table because the wood was well sealed and my husband cleaned it and resealed it in a safe sealer for me. I kept my CD’s and had them cleaned but threw away the cases. I did not keep my clothes, shoes, purses, computer, television, DVD player, refrigerator, mattress, car, and cloth furniture. My photo albums were boxed in plastic storage containers and will eventually be scanned for me so that I can reprint what I want to keep or simply look at them from a DVD player or my computer.
Miche and Patricia, please step in and comment here as well.
I’m going through the same thing. We just pulled apart an air purifier that was in the mouldy house: it was putrid. I took photos for a post coming up. So I guess all electronics are going to be like this. I do think some things can be remediated but you need lots of sun, fresh air and a vacuum with a HEPA filter on it. All my books, I’ve aired for months and have now packed into boxes ready for storage (not sure if they’ll be okay or not but I love them too much and hope I can be well enough to have them in the house one day). My photos that were behind frames are ruined, they stuck to the glass from the moisture in the air. The rest, I too will scan and reprint, then chuck out.
It’s hard to advise someone else, it might be worth trying to salvage things if you can get enough UV light to kill the spores then vacuum them off. If the mould is visible, I’d chuck it out. The same for anything that smells when it is wet (mildew).
Starting fresh and slowly introducing things one at a time might be a good idea but if mould makes you so sick you can’t function then the choice will be easy.
Good luck.
Mold illness is the sum total of your total burden of exposure.
The thing to be cautious about when introducing stuff that you’ve saved is that the last thing you brought in might feel like it is the cause of your relapse, when in reality it was just the “last straw”.
Then you are in the position of having to identify and remove enough of the lesser contaminated objects until exposure level is low enough that your reactivity subsides again.
Bringing things back in is an unknown. You have to introduce one thing at a time and allow time for you to see if your body reacts. I was just so sick that I didn’t want to save my clothes, my computer, etc.
Miche – It was a decision that I made easily when I realized that I didn’t want to go back to where I was in terms of what healing I had gained. However, emotionally it was a very difficult decision to make as most of us who have walked down this path already know. I still see in my mind things that I gave up and depending on where I am emotionally mourn deeply for the loss. But it was a choice of my health or my things and I had to make the choice for health. I can’t wait to see the photos.
Thanks guys, this stuff is crazy, did you have to replace cars? Thinking that it is in my car/leather symptoms hit hard when I get in it
Delena – I did replace my car when I moved into my new home and rid myself of my belongings. For me it was the right decision. Everyone has to choose what is best for them. I am sorry that you are having reactions in your car.
I realized it wasn’t growing in my car. Just contamination.
In which case, a new car would soon wind up like the old.
I had to change my ways, and become very picky about where I park.
Over time, my old car denatured on its own and was fine again.
Erik – Once my load started going down I realized that I had cross-contaminated my car from my things from my work place and it made me ill. I started over with everything. My new car is now over 8 years old and does not bother me at all. And like my home, if you want to ride in it with me you need to wear a tyvek suit to keep it as safe as possible for me. Having chronic fungal sinusitis and knowing that the mycotoxins were in my system in alarmingly high numbers caused me to make the decisions I did.
I couldn’t afford a new car, so I didn’t have that option.
I was fortunate to have a truck.
Potentially contaminated objects go in the bed, so I could still move things without taking so much risk.
Do you then take these items and store them somewhere until you can determine if they are safe?
Yes. I have a staging system.
I assess items and their proximity is determined by my perceptions.
I never dreamed I would wind up living like this. But then… who did?
Yes, who would have guessed we would be living like we are back “in the day”.
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I have had 3 urine tests over the past 2 months. first one was 1.9 tricothocenes, 2nd test 3.94 tricothocenes.just had total mold remediation done on my home last week as well as the entire crawl space totally rebuilt with dehumidifier, sump pump, etc. took 3 rd urine test last week while living in a hotel during remediation process and test revealed a 11.13 tricothecenes. I have a doctor in Florida saying that I must go through a 12 week mold killing procdure using IV’s that is not covered by insurance and is $3000+ per week. No way I can afford this and I don’t feel sick enough to consider it. I just want to know how high a medical profession would consider my last test result and if I should consider any type of treatment quickly.
Thanks,
Mark
Mark, Your number could be going up because now that you are out of the mold your body is trying to release it. 11.13 is a significant number. Mine was 8 something. However, using a different type of test my ovaries and sinuses were 125ppm and 11.54 ppm. The machine starts counting the ppm at .02. My numbers were very high. My question to you as well is are you still wearing your clothes from the moldy home? What is the IV mold killing procedure the doctor is referring to?
Oh,OMG I cant even remember how I got to this web page but 8 doctors, becoming totally isolated, recorded in medical records as “delusional paratosis” family and friends abandon me and worse my own children and longtime medical practicioners, Pulmonist, endocrinologist and on and on turned away leaving me scared out of my wits and its been almost a year since I really go to anyplace except doctor visit and necessary walmart less than 60 miles total travel I estimate. Its been horrible for 3 years but began I survived Hurricane Katrina in New Orleans if you could call it survival. I hope to gain progress with newest immunologist which has identified despite reservations some fungal and complications of MRSA extreme disaster health issues include snake bite. It is BIZARRE to me still all though I have walked alone thru hell on earth God never left me or I would never had gotten this far. some new hope arised with Friday call on few test of recent new doctor. Thank goodness I have some type of proof finally emerging. I think I was at the edge. relief has been long overdue. nothing substancial but I know this is the doctor finally to offer hope. I ve been flooded out totally 3 times since 2005 rendered disabled after long life of energy and vitality no sickness not even a stitch or broken bone til 40 something. im not even sure why I am writing this I never am social on line. somehow just knowing others have survived this deblilitating mystery illnesses and near death experiences I kind of feel not so crazy. Hopefully now my season has arrived to be Helped for real. Please let it be. I am resourceless tired and empty however Friday test preliminary results of fungal put a hope back to find life again.Toxic life threatening cycles have worn me thin and shown true colors of many I find hard to trust anything or any one but now hope has arrived again. hope it stays now for good. Scarrrrrey nitemare and I thought the medical community has achieved so much. No NO No they have grown calouse and indifferent. this is disturbing considering we pay them to be concerned.I feel as though I have truly faced REAL EVIL WARFARE I once would have dismissed as lunacy if someone told me this could ever happen to anyone. well the area here still so overwhelmed and doesn’t look like will ever be same or even ok again. under the surface none of us survived truthfully. I hope to feel strengthened soon and return to this site with positive or atleast helpful attitude and correspondence. Whoever you/this is THANK YOU JUST FOR HAVING THIS SITE.
Kelly – Bless you for what you are going through. I wish you the best with your new immunologist. It is a struggle to find someone who cares and understands but they are out there. I just wish there were more of them. Hang in there. Please come back and comment on anything you want. There are others going through similar struggles who will also respond to your comments. I was one that was never really sick either until the mold exposure.
I believe that my MS-like symptoms have been caused by spore exposure.
A few questions:
Is it possible to have neurological symptoms and no respiratory symptoms from mold spore exposure?
Is it possible to contaminte an entire motel room with a single article of clothing?
Can spore inhalation cause MS?
Davis
My worst mold exposure symptom is neurological. It starts with my right hand shaking and then moves along the entire right side of my body. My head then begins to shake as well and my face feels like it is being pulled apart and it is difficult to breathe during these episodes. Depending on the level of spores and/or mycotoxins it is possible to contaminate an entire motel room from a single item. It is also possible that the motel room has mold already from previous guests. I can’t comment on whether spore inhalation can cause MS but I do believe it can cause neurological symptoms.
I am not a medical doctor and can only comment on my own experiences and what I have seen other mold victims go through.
Thanks for your prompt reply. I am on my fourth physcian and he is convinced that my symptoms are not caused by mold because I have never had any serious respiratory symptoms. I have had neuropathy, dizziness, balance, constipation, double vision, cognitive issues … All blood test, MRI, Xray were normal (including aspergillum antigen blood).
But my symptoms seem to be related to exposure (I am still trying to save stuff). In four months I have had a runny nose about three times for maybe five minutes – no cough.
You mentioned that your worst symptoms are neurological, but did you also have respiratory symptoms regularily when exposed?
I developed severe sinus infections because the mold took up residence in my sinuses. Did they test you for other molds? Penicillium? Cladosporium? Stachybotrys? for example? If your immune system is extremely compromised it is possible that it won’t react with blood tests. I also do have asthmatic coughing around mold but the neurological symptoms usually present themselves first. I mentioned your comment to a friend who is also a mold victim. She never had respiratory symptoms. Hers were all neurological. I also have a friend who as soon as she gets near molds begins belching uncontrollably.
I understand the isolation. The loneliness. The limitations on your life. The years of being ill and called a hypochondriac. — I live through them too. I am praying that mine was caught early enough so that my body may be able to rebound (although I understand that once a t-cell is dead, it cannot reproduce, so there is no healing). Yet I pray.
Bless you Faye Lynn. I hope recover well. It is a long journey.
can u call me my name is Andrea haarazi and I’m in NY 917-582-9511
Replied to you through my email. Will contact you soon.
Hi there! I just saw your book at the EHC-D Foundation Store and then happened upon your website today. Funny to think we’ve both crossed through the same doors at EHC-D many times! I have some questions about cross-contamination. I’m trying to wrap my head around the concept of getting rid of all my belongings that were exposed to mold (as I’ve also been told to do) and then rectifying that with the concept that mold is everywhere, you go outside, it’s in the air, you go to a friend’s house or a building that might be contaminated, it’s in their air or on the upholstery you sit on, and you then wear it home on your clothes. I can’t reconcile getting rid of my possessions with the goal of creating a pristine, mold-free environment when I think about the fact that I’m getting recontaminated any time I go outside or anywhere and bringing it back to cross-contaminate that pristine environment. I’ve even smelled mold at EHC-D and heard other patients say the same (literally no place is safe!) I’d love to hear your thoughts on this. Additionally, did you try remediating the mold in your personal belongings with any luck? Carolyn Gorman pointed me to some techniques for eliminating the mold, I haven’t tried them, not sure if they work, but I’m interested if you tried any.
Hello Aly – It is funny to think that we have indeed crossed through the same doorways. For me there was never a question about getting rid of my things. I was just too sick and wanted the chance to improve without constant re-exposure. I don’t go into the homes of my friends because they are too fragrant for me. I have pretty definite symptoms when I know I am near mold so am able to leave rather quickly or not even enter the building if I get the reaction when the doors open. I have a procedure in place where anyone that comes to visit me must put on a tyvek suit over their clothes to prevent any chance of bringing stuff into my house (mold or chemicals from their laundry products). Yes mold is everywhere but it is when your things have been contaminated indoors with mold/molds that may be competing with each other for space and thus putting off mycotoxins to claim their territory. I did not try to save my things. One thought is that ammonia can kill the mycotoxins. I learned this long after I had gotten rid of all my clothes. I don’t think I would have taken the chance that it totally got rid of them and that my things would be safe enough for me to wear or be around. When I have had a quick exposure to what I think is mold, I have removed my clothing and soaked them in ammonia and then washed them several times afterwards to get rid of the ammonia. I am not a professional and cannot say that what I have done is the answer for everyone. I only can say what has or has not worked for me. I hope this answers your questions. You may always contact me through the contact button and I will email you back.