Mold toxins as a cause for ME/CFS?

[DoubleBubble]

I'd forgotten that the newsletter link I provided above is more about detox pathways, and not really about binders. Here is a list of which binders Dr Nathan suggests for which toxins.

Ochratoxins: cholestyramine, Welchol, and activated charcoal
Aflotoxins: charcoal and bentonite clay
Trichothecenes: charcoal and probably chlorella and clay
Gliotoxins: clay, NAC, s. boulardii.

thanks. Check out my last post above. What do you think? Talking to my fatigue doctor today in an hour.

 

[Davsey27]

Emf multiplies mold

So if you have wifi and mold in the house this can be problematic

 

[Dufresne]

thanks. Check out my last post above. What do you think? Talking to my fatigue doctor today in an hour.

I wouldn't recommend the HLA DR test for reasons stated in this thread. And I don't know enough about the available mycotoxin tests to really recommend them either. Unfortunately these are all expensive tests. However, if I was choosing between the two I'd definitely go for the mycotoxins. I believe Dr Brewer used RealTime Labs, and none of the healthy controls in his study were positive for mycotoxins, whereas 93% of CFS patients were. That's impressive.

I like a decent mold avoidance trial, various binders, and the free VCS test mentioned in this thread as easy, safe, and cheap interventions. Feeling the effects of an intervention is my gold standard and that's always been enough for me.

 

[PatJ]

This is interesting from Dr. Nathan: 10 Common mistakes in the diagnosis and treatment of mold toxicity

I believe Dr Brewer used RealTime Labs

Here is what Dr. Nathan has to say about labs from the above link:

If you are only using one laboratory, you will often not get a complete picture of what your patient has and your treatment will be incomplete as well. Remember that RealTime and Great Plains laboratories use different technologies and have different strengths and weaknesses. If you use both, you will have a much better overview. Other labs have recently entered the market but we have not found them to be anywhere near as accurate or clinically useful as Great Plains or RealTime.

 

[Dufresne]

This is interesting from Dr. Nathan: 10 Common mistakes in the diagnosis and treatment of mold toxicity

Here is what Dr. Nathan has to say about labs from the above link:

Sounds like good advice. If you have the money to spend it's probably worth it to do so.

 

[DoubleBubble]

Thanks, I’m getting Real Time done. I’m in NYC and it’s the only provider that will do the test. These tests aren’t FDA approved in NY but somehow Real Time can offer them. Great Plains told my doctor they won’t offer me the test due to legal restrictions.

 

[Arius]

I believe that anything that triggers an immune response can trigger ME, so yes, exposure to molds qualifies. However, once triggered, avoiding whatever triggered your ME may not make any difference. Further exposure to the triggering agent might make ME worse than it otherwise might be, or it might not; it depends on the individual.

This makes a lot of sense to me. I was exposed to some sort of nasty black mold before I got ill. But I always assumed mold wasn't an important factor for me for two reasons:

1. My understanding is that mold is only a problem if your immune system is already weak. Mold attacks weak plants, weak immune systems, etc. So I could see it being a problem for an already sick person, but I have trouble imagining it making an otherwise healthy person sick.
2. I've lived in a lot of different places over the years, presumably with varying levels of mold, and my symptoms have not varied from place to place.

In response to #1, it's possible that stress and genetic factors did render me vulnerable to mold.
In response to #2, it does make sense that mold could TRIGGER the CFS/ME, after which point it doesn't get better or worse in response to less or more mold.

The other reason I've never bothered to become a Mold Warrior is that adequately treating for mold seems impossible. I don't live anywhere near a desert and couldn't afford to move there or even handle planning and executing such a move in my condition. I also can't just throw away all my stuff. I'm poor. I need my clothes and bedding and so on.

 

[Wishful]

1. My understanding is that mold is only a problem if your immune system is already weak. Mold attacks weak plants, weak immune systems, etc.

I don't think that most people who are affected by environmental mold are being infected by it. They may have an allergic response to it (maybe the spores) or they might be sensitive to the toxins (from dust or spores?). I haven't researched mold intolerance, so I'm not sure of the mechanisms. I think I have an allergic response to the fungal spores from some kind of lichen, but I don't have any problems with molds in general.

I think a good way of testing for mold intolerance is to scratch&sniff some (unless you are really, really intolerant). If you are seriously intolerant, a safer test is to live somewhere definitely mold-free for a while. I don't trust allergy tests, since that only tests type I allergies, and AFAIK is only 50% accurate, so you might as well just flip a coin instead.