Martin aka paused||M.E.
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Biolab in the UKWhich test are you getting? Thank you
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Biolab in the UKWhich test are you getting? Thank you
It is also important to note that many of the patients were still sick despite the fact the exposure took place long ago and they were no longer exposed. The fact they tested positive shows it is not a detox problem. The fact you pee it in a cup means it is leaving the body. The problem isn't with detox. Instead it is an illness caused by mold spores settling into the sinuses where they continue to grow and produce mycotoxins and other toxins etc. This is completely different than the Shoemaker way of thinking."
Second, CFS/ME pathology triggers leaky gut and this increases the uptake of mycotoxins from the food. Simethicone and probiotics could bind some of the mycotoxins in the gut so that it isn't resorbed as easily.
If there is a mold connection to ME/CFS, it might just because mold weakens immunity, and allows the virus to run riot in the body during the acute infection (when you first catch the virus). This may allow the virus to break into tissue compartments like the brain which it may not normally get into, thus setting up ME/CFS.
I'm actually thinking of setting up a PR poll to ask how many people got mycotoxin levels tested - based on Brewer's results he said 93% of his CFS patients had mycotoxins in their system, I'm keen to see if this is replicated for Phoenix Rising.
This is an interesting point, but is there any evidence to suggest that the amount of mycotoxins absorbed from food alone could ever be enough to be statistically significant on a test?
Or that leaky gut would permit more absorption of mycotoxins than a healthy gut?
So in light of this I've created a new Poll, asking whether people have been tested for mycotoxins. Please consider responding to that one too.
Was there any reason why the results of this study didn't create more of an effect through this community? Did lots of people get tested but have low mycotoxins?
You mention you had what you feel was a Herx reaction from the biofilm nasal spray, even though you don't have high levels of mycotoxins.
Did you continue with the nasal spray, what was the upshot of it, did you end up feeling any better?
That's a good point. But again it would seem to suggest that resolving the mould issue is absolutely crucial in recovering from CFS, regardless of whether it's the direct cause of disease or whether it lowers the immune system's ability to fight off a CFS-causing infection.
Source: here.Visual contrast sensitivity test (VCS) can be used to diagnose mold illness. This visual test utilizes your eye's ability to detect shades of contrast as a means to gauge exposure to mold toxins.
A free online version of the VCS test, developed by Dr Ritchie Shoemaker and Dr H. Kenneth Hudnell, which takes just a few minutes to complete, can be found here.
If your VCS test comes out positive, it suggests you may be exposed to mold toxins (or other biotoxins or neurotoxins such as ciguatoxin), and have a mold-induced illness. 92% of people with biotoxin-induced CIRS illness have a positive VCS test. Ref: 1
Can you add selections for CIRS diagnosis, CIRS panel, and the VCS test as well? And what kind of mycotoxin they did, namely urine, or antibodies.
And as the author of the report states, the incidence of 93% amongst CFS sufferers is clearly too high to just put down to chance alone; it's a ludicrously high figure when compared with the healthy subjects, even if none do recall any history of living in WDBs. It seems to me to be an obvious place to start, no? There could of course be loads of reasons why it isn't the crux of someone's CFS, and I've no doubt there are multiple different causes, there is clearly no one silver bullet or else none of us would be here. But we're all here looking for clues and this seems like it might be a mighty huge one, even if it is one that's combined with say, gut dysbiosis or SIBO or some sort of infection.
So in light of this I've created a new Poll, asking whether people have been tested for mycotoxins. Please consider responding to that one too.
And of course all of that presumes that the gut is what's being affected by mold, since Nystatin is not orally bioavailable.
Are there any downsides to using Nystatin for such a long time?
Do you mind me asking what you mean about the CIRS diagnosis? I'm not overly familiar. Is there any diagnostic difference between CIRS and CFS?
Theoretically, fungal infections can also manifest in the blood. Nystatin wouldn't help in this case because it's not resorbed from the gut, though a leaky gut might change this.
@hb8847 you mentioned that you had some success with a long course of Nystatin, and maybe it would be feasible to push that treatment specifically and collect people's experiences with it. Nystatin is pretty safe and readily available, and I guess the upside to any antifungal is it's likely not going to thoroughly screw up the microbiome like an antibiotic would. Would you mind sharing what dose you were on and any other details of the treatment? Are there any downsides to using Nystatin for such a long time? I've taken it before to treat oral thrush that I got after antibiotics, but I assume that the typical 7 day regimen is too short to see any changes in ME/CFS. And of course all of that presumes that the gut is what's being affected by mold, since Nystatin is not orally bioavailable. But if there are few downsides, maybe that's the point worth bringing home to everyone
Are there any downsides to using Nystatin for such a long time?
I would also point out that, in recent post-mortem studies of Alzheimers patients, fungi were detected in the brains of the Alzheimers patients.
This finding raises a lot of questions which I, for one, can not answer.
I have not been exposed to mold from water damaged buildings as far as I know. We did have a roof leak in our house which caused damp wallpaper for some months in one bedroom (not the one I sleep in), with a slight musty smell, but no serious areas of black mold growth could be seen.
I've got some links to the criticisms of the Brewer paper and mycotoxin tests,
My present bedroom isn't heated well enough in winter to prevent black mould from growing in the corners. I've swiped a rag across the floor under my bed and had the rag immediately be black with mould spores/particles. However, despite this large amount of mould, I don't have an increase in symptoms in winter (when the mould grows). I haven't noticed any correlation between mould in my environment and my ME symptoms. Thus from my own observation, I don't see a link between mould and ME.
From what I've read, there is a distinct difference between a mould allergy, which seems to be what you're referring to, and an issue of mould having colonised some part of the body and affecting the immune system that way.
I can certainly accept some PWME being particularly sensitive to moulds or their toxins