Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Friday, August 30, 2013

How big a role do mycotoxins play in ME/CFS?

The only explanation for the etiology of ME/CFS that makes sense to me is that it is a disease of complex origin, with multiple contributing factors.  I simply don't believe that if ME/CFS had only one cause (say, a virus) that its origins would have eluded so many dedicated researchers for this long. I believe that, like autism, multiple sclerosis, autoimmune diseases in general, and other diseases of inflammation, we're dealing with a complex nexus of environmental, pathogenetic, genetic, dietary, vaccine-related, and possibly stress-related factors.

To my mind, this multiple causation theory is the only theory that explains why ME/CFS and other "chronic illnesses of unknown origin" aren't more common than they are.  If it's environmental, then why don't all members of a moldy household always get sick?  If it's solely genetic, again, why haven't we seen a clear lineage of ME/CFS being passed down in affected families?  (Sometimes we do, sometimes we don't).  If it's a pathogen, why don't all people with high EBV and CMV titers get ME/CFS?  Why don't we all have borrellia?

I personally don't believe there's some mystery pathogen out there that we haven't identified yet (ala XMRV).  I believe if it existed, it most likely would have been found by now.  One even hears the theory that ME/CFS tends to hit "type A" personalities more often, but if that's true, I know quite a few people who are much bigger "stress cases" than me and they're doing just fine.  Vaccines?  Well, you know where I'm going with that....

Instead, I believe that when they finally solve ME/CFS, they'll discover that us PWMEs are the unlucky few who suffered the chance convergence of triple or quadruple insults to our systems, often all within a short period of time.  If you read enough PWMEs' "origin stories" they almost all describe a piling on of various factors: a stressful event, then a viral infection, followed by a vaccine, etc.

By the way, take a moment to think about what order of importance you would have placed these five commonly suspected factors in ME/CFS.  My order, from most significant to least would probably be:

1.  Pathogens
2.  Genes
3.  Vaccines
4.  Dietary
5.  Environmental
6.  Stress-related (I question whether this even belongs on the list)

(Have I left anything major out?)

I couldn't even tell you why I've ordered the list in this way.  It's the gestalt product of hundreds, maybe thousands, of articles, blogs and forum posts that have washed over me and are now sloshing around in my head.  My ordering is likely to shuffle at any time based on the latest CFS Facebook link, or some fad theory making the rounds.

Now consider that the path to ME/CFS is likely different for each patient.  Maybe Patient A's path to ME/CFS was 80% environmental, and he was then pushed to the brink (another 19%) by pathogens and a little stress was the coup de grace.

And Maybe Patient B has a homogenous MTHFR genetic polymorphism, which gets her 50% there, and a vaccine at an inopportune time finishes the job.  The different pathways to ME/CFS could be endless.

(Side note: with these complexities, not to mention the complexities of our ever evolving symptoms is this "multi-system" disorder, I believe the best chance we have to get to the bottom of ME/CFS is through compiling vast data banks of detailed patient histories and then applying complex data analysis techniques.  This, of course, depends on as many of us as possible participating in patient databanks like the Open Medicine Institute's, discussed in this post)


All of that was my prelude to saying that I've been rethinking the role of environmental issues, particularly mycotoxins (mold-related toxins).  For a friend of mine, this has been the key to his improvement in recent years.  He had to go to great lengths to enact this improvement, even moving to a city with drier, cleaner air, and then renovating his home to remove mycotoxins and environmental chemicals.  It hasn't cured him, but he has done a remarkable 180 and can do things that I can't even consider right now.  And more importantly, he has control over his crashes, for the most part.  If he crashes, he knows why and he knows what he can do about it (get out of the triggering environment.)

That same friend recently posted this article that has me rethinking the role that environmental factors might play in my illness.  I think all patients should read it and consider whether mold is an issue for them (if you haven't already):

As I told my friend, I have always intended to investigate mold issues as a factor in my illness, but it becomes hectic when you're chasing so many different possibilities and treatments. Even high priority questions like mold could take me years to get around to at my current rate.  There's only so much I can investigate at once.  But I'm now moving "mold" up higher on my list of priorities.

For those like me that haven't had a chance to consider mold very much, here are a few other sources to get you started:

  • Mycotoxins are the main focus of one of ME/CFS's more well-know physicians: Dr. Shoemaker.  I admit, I haven't even had the chance to learn the first thing about Shoemaker's theories.  

One thing that gives me pause:  When I search the Internet for studies or articles on the role of mold exposure in ME/CFS, all results point back to this one study linked above.  I'd like to see it replicated and peer reviewed.  (This is when the progress of ME/CFS research becomes frustratingly slow...)


  1. Hi Patrick, did you mean to link to one of your posts? I would love to read the article written by your friend, but don't see it there.

    Btw, I am completely on the same page as you, wondering about mycotoxins and not knowing where to begin. Having your house inspected seems like an expensive racket.

    An off-topic question for you: regarding genetic testing, what is the point in doing it (I'm worried about money)? Can it point towards other tests or treatments? Or is it just for your own information?


    1. Hi Elizabeth, that's for pointing ouf that I linked to the wrong article. I fixed that link now.

      As far as having your house inspected, I got a quote for that about a year ago and it was going to cost about $600. While that's a lot of money, lately I've been thinking it might be worth it if it has a chance of leading to real improvement. Of course, the big expense comes if/when they mind toxic mold spores. Mold remediation is hugely expensive and most homeowner's insurance policies exclude that.

      Regarding genetic testing, I think the only reason it makes sense is if you are going to do a "nutragenomics" program like Yasko's. It tells you what dietary changes to make and what supplements to introduce in what order based on your genes.

  2. $600 before remediation! Yikes! See, that's just it: I'm convinced the inspectors are in cahoots with the remediators and they will ALWAYS find toxic mold. I'm terribly skeptical ;)
    But, if i thought I could improve, I would gladly hand over thousands of dollars.

    I'm just now trying to learn about Yasko and all the rest. Uugh, it's just exhausting- the chase for healing.

    Thanks so much for your info. I love you blog. :)

    1. Thanks Elizabeth. I read your most recent blog post and thought it was really good. I've been meaning to leave a comment but everyone else pretty much said all the good things to say. haha.

    2. You can do a urine test for mycotoxins at REALTIME laboratories in Texas (director is a co-author of recent study PWC referenced). I think it's $699.

      You can do an ERMI test through Mycometrics. I think it's $350. In this test, you mail them household dust and they use a standardized test to identify and count molds.( you use their protocol to collect the dust).

      Both companies are excellent.

  3. Patrick - If you haven't already I highly recommend reading "Mold Warriors." It is the worst-edited book I have ever read, but is also very enlightening.

    1. Thanks B. I will definitely read it one of these days. It's one area that I don't know much about.

  4. I'm also aware of mold since I had testing with a very high C4a.

    One thing I had not even been aware of is that front load washers (the new, more expensive washers) are prone to mold. It is critical that you "clean" with bleach monthly and clean the gaskets. '

    I had noticed that my towels would smell after even one use. Turns out my washer was full of mold. I put the washer through many clean cycles with bleach and baking powder. If I forget to clean the washer, it returns very quickly.

    Mold is just one of many environmental triggers and given my high C4a, I was determined to do whatever I could. I'm not better but I now know how important it is to clean my lovely front load washer. Never was a problem with my old washer!!!

    1. Hi JT. I have a front load washer and I know it can be a mold problem as well. Tide makes a front load washer cleaner that you're supposed to use once a month, which helps. The problem is I forget to use it as often as I need to. Another thing that helps is to simply leave the door of the washer open between cycles.

      I think when I get a new washer (almost due) I'm going to go back to a regular top loader.

  5. Just finished a five week mold remediation on our house, and I've been sick for 22 months. So completely resonate with this post. Thanks for a great blog. I tried to subscribe but ran into issues. Are you on phoenix rising?

    Another book I found helpful was The Mold Survival Guide, written by a home inspector. For me as a rank novice, it helped me understand what we were up against, fire our first set of remediation and testing people, and get ones who have finally got the job done.

    1. StoneCutter, thanks for you two recent comments. I really appreciate them and the information you gave me about mycotoxins.

      Yes, I am non Phoenix Rising, but I don't post there too often anymore. But I check in from time to time. I'm there as Patrick* (with an asterisk because there's a regular Patrick). What about you?