We rarely put mold in the ‘pathogen’ category, but mold is an organism – a fungus – that produces toxins that can evoke strong inflammatory responses in our bodies and even in our brain. Earlier this year we heard how extreme mold avoidance helped Joey Tuan. (I saw and shook hands with Joey at the IACFS/ME conference – he’s definitely been lifting weights :)).
Black and related molds
Last year we presented the results of a study suggesting that mold exposure could be high for some people with Chronic Fatigue Syndrome, but little other published research has been done. Mold, like mercury, and the MTHFR mutation remains a kind of ‘underground’ topic in ME/CFS; it’s of intense interest to a significant number of patients but rarely makes it to the scientific journals.
But here comes another mold avoidance success story, this time in a video from Giles Meehan. Giles tells how avoiding mold has made a significant difference in his health and explains the basics of mold and mold exposure in easy to understand terms. The video is a great beginners guide to mold.
Mold and ME(CFS): A Different World
Mold Resources
The Paradigm Change website asserts mold should be taken much more seriously in neuroimmune disorders
With the development of ParadigmChange, a website devoted to understanding the effects of mold on neuroimmune illnesses, we have a go-to place to learn about mold. You can find video’s and white papers from professionals in the field, a free ebook (‘Back from the Edge’), mold recovery stories, and more.
While it’s not clear what if any role mold plays for many people with ME/CFS/FM, it’s very clear that mold avoidance strategies benefit some people greatly.
When I think of mold and ME/CFS I think of people making dramatic lifestyle changes such as moving out into the desert, but in this video I learned that simply changing your clothes and washing your face and hair after mold exposure can be helpful.
There’s a lot of learn about mold and ME/CFS and FM; I don’t know a tenth of it, but I do know that for some people mold is definitely something to consider.
A quick note to let the ME/CFS community that mold avoidance has played a factor in
my daughter’s recovery. Both of us have ME/CFS and have become hypersensitive to
some things. We are pretty sure Mold is one of them. Black mold and Aspergillus.
I just wanted to put this out there that we believe if mold avoidance helped us just as
any other treatment we report back on we should let you know. Since no two people are alike,
what may work for us, may not work for you but it’s something to consider.Thanks! Astrea
Thanks for passing on your experience Astrea. How ‘recovered’ is your daughter now?
I haven’t paid much attention to the hypothesis that exposure to mold causes — or makes worse — ME/CFS, but a couple of months ago in Discover Magazine I read a very interesting article about Joan Bennett’s mold research. The article begins:
“Joan Bennett didn’t believe in sick building syndrome. As a specialist in mold toxins, she had even testified in trials in support of insurance companies denying claims to homeowners who claimed that they had been sickened by toxins from their moldy houses.
Then Hurricane Katrina struck, Bennett’s home was flooded, and she evacuated. ‘A month later, as a form of psychological sublimation, I decided to travel back and sample my home for mold,’ she said. Her house smelled horrendous, worse than any mold she’d ever smelled. She donned a mask and gloves and protective gear, but even so, she felt awful – dizziness, headache, malaise. She walked outside and felt better. Then it struck her: ‘I think there’s something in this terrible mold I’m smelling.’ ”
Read the rest of the article here:
http://blogs.discovermagazine.com/crux/2014/01/14/how-the-smell-of-your-home-could-be-making-you-sick/#.Utg_zxDKvxE
Dr. Bennett doesn’t believe that mold toxins in spores cause illness but, rather, the smell of molds, their volatile organic compounds. Giles Meehan mentions Joan Bennett in his video.
I am very sensitive to chemicals and mould I would like to know about the MTHFR mutation. The Chemical Injury Network is suggesting that some people be tested for this mutation.
Where does one get testing. When I contacted 23 and me they said it is not connected. Could someone tell me where the test is offered.
Thank you.
Mary, hi, I had my genome done with 23andMe a year or two ago, and I couldn’t make heads or tails of whether I had the MTHFR mutation or not. Then Joey from healclick.com told me about http://geneticgenie.org/. If you get your genes done on 23andMe, then go to geneticgenie, they give you a way to dump your genetic info into their gizmo, and they give you a one-page summary of your MTHFR profile, showing mutations and whether they’re homozygotic or heterozygotic (only on one chromosome, instead of, worse, on both).
One caveat that I’m not sure what to do about, but perhaps you can look into it. I read somewhere that the FDA had issued an order preventing 23andMe from continuing to give out health information to consumers. They still were able to give out the ancestry part, just not the health part. I don’t know what has come of this, but I would definitely inquire if I was thinking of plunking down the $99 for their service. Hope this helps.
BTW, I had the MTHFR mutation on both chromosomes and started Rich Van Konynenburg’s simplified methylation protocol (from back in 2011), and I’ve noticed some real changes in my skin, the fluid in my system and possibly more energy.
Best of luck with this.
Could you please share Rich Van Konynenburgs protocol. Much appreciated.
Interestingly, I was just told about this MTHFR mutation today, by someone who has two patients who have been helped by pursuing it. I did just send my info to 23andme, for another reason. This health care practitioner told me that there is a lab who hooks into 23andme and gets the raw data from them, from which they do the test. I don’t have the info on who that is yet. She says she’ll get that for me when 23andme has concluded my results.
The website I think your health care practitioner is referring to is Genetic Genie at: geneticgenie.org
They also provide a detox profile that doctors such as Amy Yasko use.
In addition this site has a lot of good MTHFR info: mthfr.net
23andMe gives you the raw genetic data but for now they cannot currently interpret it. However other sites such as Genetic Genie that are unrelated to 23andMe do the interpretation part based on the raw data.
I have a little gadget that measures the humidity in my house and I work hard to keep it down below 40%. I read that for people with mould allergies it is important to keep the humidity between 35% and 45%. I use a dehumidifier when it gets too high.
I also have a gadget in my bedroom that is supposed to kill mould spores. (http://www.breathingspace.co.uk/air-purifiers-c1/airfree-p40-silent-room-air-purifier-p5) I don’t know if the claims are correct but I know that up until the last few weeks my asthma was much better when I had it on. (The asthma returned when I had the machine switched off when I was on holiday and forgot to switch it back on again.) It could be coincidence.
My ME has been much improved in the past 6 months and I’m now walking 2 miles a day. I don’t know if that is partly a result of controlling the mould. (I also think that taking phenylalanine tablets each day has made a bit difference for me, as I was obviously not absorbing enough and had to resort to eating 150gms of chocolate a day until the white tablets kicked in.)
I so sympathize for the many who know very well they live in a not so mold-free environment, old houses or buildings, humid basements, etc, but simply just can not in any way move out. Dietary restrictions, the seemingly impossible task of cutting out gluten from your diet becomes kid stuff compared to trying to control spores you breathe… I don’t believe that ignorance is bliss, but when you are house-bound and partly bed-bound if not more, maybe you are better off not knowing about the air-quality you breathe! The stress will poison you just as much… Unless you are made ill directly and solely by those spores alone…
Anyone, like me, who has been in the construction industry (in Canada at least) knows that mould is the new asbestos. There is much mould awareness training for jobsites, and strict regulations about building materials and moisture control. Indoor air quality investigations always test for moulds. Less than one percent of mould species are toxic, and many more are irritants, but the toxic ones are nasty, and you can’t tell which is which just by appearance or smell. Mould is not to be dismissed as innocuous and should be considered when dealing with any environmentally-mediated illness.
I have FMS/CFIDS and became deathly ill with a severe, painful respiratory virus when I worked in a “sick building” in 2005 (water-damaged from a hurricane). I still have some lingering neurological symptoms, even though I have been out of the building for 8 years.
A friend told me that her daughter and son-in-law recently had to move out of their moldy house into a shed (new) in their yard, bought a new bed to sleep in the shed, etc. They are extremely ill from mold and distraught about what to do about their moldy house and health situation. The husband has severe cognitive dysfunction which affects his daily work and activities.
Mold can be deadly IF you are genetically predisposed. Dr. Ritchie Shoemaker discovered a simple way to find out if you have the “dreaded mold genome” – which I do, based on his test. I describe this self-test at http://www.fms-help.com/mold.htm – SCROLL DOWN to my December 2011 UPDATE. It takes about 3 minutes at home.
I only discovered I had a mould sensitivity quite by accident. I’ve gone from eating camembert & brie cheese freely 35 years ago, to now…….even a small mouthful makes it difficult to breathe.
But it was quite by chance I pulled my old bed out from the wall to vacuum under and behind it about 5 years ago and discovered the end of the bed was actually wet and covered with mould. And yet no mould was visible on the wall. I now have a long panel heater to put on in my cold bedroom in winter and keep my new bed about 6-7 inches away from the wall. Now I’m retired, I can also open the bedroom window wide every day to air the room (unless it is actually raining). Before, I had to keep my bedroom window closed while I was at work (due to the possibility of rain coming in with an unexpected shower or burglaries in the area).
My waking up with chronic sore throats and a croaky voice have completely gone.
(That’s not to say I don’t get throat & breathing problems with certain foods and/or chemicals or pollutants in the environment, but at least knowing I have MCS means I can mostly avoid these situations).
Actually, Cort, there is quite a bit of published work on this topic as well as patient data and science behind it.
http://www.survivingmold.com is the best resource for accurate scientific information that includes articles, published papers, rebuttals to the naysayers, and the physiology on how biotoxins trigger Chronic Inflammatory Response Syndrome in genetically susceptible people.
I suspect this group will be releasing even more compelling days within the next few months.
I wasn’t referring to studies specifically on chronic fatigue syndrome and mold. thanks for the link though..
Mold (and chemical exposures – so for me it probably is the VOC component of mold) can sink me really fast. I am relatively ok upstairs in our house but if I go into the basement I feel much worse (brain fog, malaise, achenes) and the fatigue the next day is also worse. Unfortunately I am one of those on a limited income and unable to drive far so for the moment I don’t have a plan how to get to a better location/housing. I would suggest anyone with CFS look into mold and environmental triggers as contributing factors. Limiting your environmental exposures may or may not ‘cure’ your CFS but as Giles says in his video it seems to help a lot of people, including me and my friends.
Mold, Chemical and extraneous Toxin exposures, high levels of Radon and ElectroMagneticFields (are very high where we live) have wrecked havoc on our families health. For well over one year we were exposed to Hidden Mold in residence (in the plumbing behind the walls)has had us on an extensive medical mystery journey. Not too long after leaving the moldy residence (where numerous tenants became very sick), we suffered “Soot” inhalation for approximately 3 months. The fine black dust was soot from a damaged and unused chimney that came into the home through the air vent systems. Furniture, household items, clothing should have all been replaced…not all but some were.
Heavy metal toxicity via water, soil, un-necessary medications posed even more allergies as well as, severe problems with blood works and quality of life. Interference with schooling, work, overall wellness had become the top priority. Unfortunately we still have lasting permanent health problems.
Being highly sensitive with Chronic Fatigue Immune Dysfunction & Fibromyalgia, years of medications that further destroyed RNA/DNA cellular structures, the question of Immune dysfunction or underlying Autoimmunity defects remain unanswered. Neurotransmitter and other testings revealed quite an unwelcome reality. Still on the healing journey. Detoxification was partially helpful however, rather concerned about our health and others living in the same area.