So this study has already been posted in the Research section of PR, but the thread has sort of died as it started back in 2013. I am reposting here because it's directly related to mould and mycotoxins and feel it's a useful area of discussion in this area of the site.
Here is the link
And this is the abstract:
So 93% of CFS patients were positive for at least one mycotoxin, whereas 0% of healthy patients tested positive!
Is this not completely groundbreaking?! Surely it provides a massive indication that mycotoxins are a direct cause of CFS in a huge number of patients? I guess perhaps it could also mean that whatever is causing the CFS in patients (say, bacterial dysbiosis) is also making the body more susceptible to mould infection, but the incidence of over 90% seems to me too high to be mere coincidence, no?
I'm particularly interested in this because I have severe CFS (grade 1 on the PR scale) and also tested positive for several mycotoxins back in January. Specifically my Ochratoxin A was very high (scored 18), as well as Citrinin (66), and Mycophenolic acid (110). Ochratoxin was mentioned in the report as being the most common, found in 83% of patients.
(From my own experience with CFS too, the most success I've had so far is in treating mould/fungus. Back when I first got CFS around 6 years ago I also had POTS and was basically bedbound the whole time, and it progressed very quickly. My first doctor's aim was to treat gut dysbiosis and prescribed antibiotics, but these didn't help. She then prescribed Nystatin powder which I slowly built up over the course of 9 months and gradually got better - both my mental fogginess and my CFS seemed to be on the wane. But in spite of these improvements my food sensitivities seemed to be getting worse, until a really bad episode with food sent me straight back to being largely bed-bound.
Since then my issues with food have completely dominated my health and my life, and I was formally diagnosed with Mast Cell Activation Syndrome (MCAS) earlier this year. But I am not nearly as bad as I was prior to treating for mould, and I no longer have POTS at all. My CFS now seems completely related to the MCAS (which itself is triggered by food) and if I fast for several days my CFS reduces considerably.
Clearly I have not gotten rid of all the mould in my body, and I have absolutely no doubt the mould is also directly contributing to my MCAS and my CFS. And I would love to get back to treating the mould but any treatments I now try seem to trigger my MCAS too much to make them manageable. My plan for now entails reducing my MCAS symptoms with mediators. Hopefully these work, after which I will get in touch with some mycotoxin specialists and attempt to get rid of my remaining mould.)
Overall though I had no idea though about the degree to which mycotoxin illness was prevalent in CFS patients. I mean, 93% just seems completely insane to me and way too high to be mere coincidence?! I feel I must be missing something, is this not groundbreaking info for CFS sufferers? Am I wrong here, what am I missing?
I'd also be interested to hear if anyone here's had success with treating for mould? And if so, which treatments? Purely gut related or also other treatments to remove mycotoxins?
And also, whether anyone has had any success with the MCAS route I am on right now, specifically treating the MCAS first with mediators and then following up with mould treatments.