93% of CFS patients tested positive for mold/mycotoxins?!

Have you undergone treatment for Mould or mycotoxins?

  • No

    Votes: 27 73.0%
  • Yes, and it helped my CFS a bit

    Votes: 2 5.4%
  • Yes, and it helped considerably

    Votes: 3 8.1%
  • Yes, but it did not help

    Votes: 3 8.1%
  • Other

    Votes: 2 5.4%

  • Total voters
    37

perrier

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I seem to recall Dr Ron Davis in one of his update stated that OMF would be examining the mould issue as well. I have not heard anything, but then I miss a good deal. Any updates?
 
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I seem to recall Dr Ron Davis in one of his update stated that OMF would be examining the mould issue as well. I have not heard anything, but then I miss a good deal. Any updates?
Then you can as a side note tell him about the Abilify tolerance. Regarding the poll in Facebook group it’s 1 out of 6
 

lenora

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Right, but when does tolerance set in? Have they taken smaller doses, full strength, or just what? That's the exact problem with polls....not enough information on most. Yours, Lenora.
 

serg1942

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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.

Thanks, Hugo
Hi Hugo,

Thank you for opening up the thread and sharing the study.

I have been reading for years about CIRS and Mycotoxins-related chronic disese, even though I don't seem to get better when going from my always humid city to a dry place with no mold, and this is a common symptom of those who have mycotoxins and especially who get better with treatment and getting out of the exposure.

So two questions come to mind:.

1. Have you ever moved to a dry and/or mycotoxins-free place, and if so, did you improve?

2. Nystatin is not as far as I know a drug that usually improves people with CIRS, as it is not a binder. Yes. It can kill yeast, but only in the gut (and mold is normally in the sinuses and lungs--that if it indeed colonizes us, which is a hot topic of debate)
. So, could you actually have had a problem with yeast and not with mold? I mean, perhaps you had a high degree of the old "chronic candiasis" as past of the dysbiosis that is inherent to ME/CFS?

If your question to the last question is affirmative, I gues you could benefit from a low carb diet? Have you ever tried it? Actually not just low carb, but also free of mycotoxins-containing foods such as coffee, nuts, cereals, etc.? If you got MCAS after Nystatin it does point to food allergens, and a elimination diet could help (such as the Whals diet for MS or a complete carnivore diet as used for autoimmunity and brain cancer).

If your respond positively to the first question, then do treat it. I've seen a couple of close cases improve tremendously (and many on FB groups). And do research CIRS when energy allows. There's just too many things intertwined with ME/CFS to not be at least a subset (actually only a 7% of CIRS patients are caused by mycotoxins according to Shoemaker. The rest can be Lyme or any other infection or toxin).

I hope you figure out if this is a proper treatment for you!

Sergio
 
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I lived right years with black mold but got worse in a mold-free space (parents house, new building)... But I've ordered a test because it's not unlikely I have it... The visual test was borderline positive
 

jump44

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All I know is I spent the last year and a half in a mold riddled apartment. My condition was deteriorating much more rapidly than at any other point in the illness. I got lucky and got out a couple weeks ago. I’m also doing the herpes protocol but just moving has made my sleep better and I feel more clarity in general. However I feel like there was a lot of damage done. I also have constant sinus/head pressure - I don’t know if this is a possible indicator of mold as well.
So many theories…. So little time. My advice to anyone living in a moldy environment with cfs- gtfo as soon as you can.
 

hb8847

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Hi Hugo,

Thank you for opening up the thread and sharing the study.
No problem @serg1942 , thanks for reading.

1. Have you ever moved to a dry and/or mycotoxins-free place, and if so, did you improve?
I'm fairly sure my current accommodation is free of mould, but I live in the UK which is generally fairly damp and wet so I'm not sure where I could move domestically that would be dry enough. I don't seem to recover in the dryer, summer months though, to be honest I haven't noticed a pattern between the weather and my health. I'm not ruling it out though.

2. Nystatin is not as far as I know a drug that usually improves people with CIRS, as it is not a binder. Yes. It can kill yeast, but only in the gut (and mold is normally in the sinuses and lungs--that if it indeed colonizes us, which is a hot topic of debate)
. So, could you actually have had a problem with yeast and not with mold? I mean, perhaps you had a high degree of the old "chronic candiasis" as past of the dysbiosis that is inherent to ME/CFS?
Good point, and yes I am vaguely aware of the difference - both yeast and mould are fungi, but evidence of one doesn't necessarily mean you'll find the other. And yes my Nystatin treatment was solely focussed on the gut.

That said, I have had it mentioned to me by a doctor that a yeast issue in the gut could be indicative of mycotoxins elsewhere in the body. Since treating with Nystatin I have had a repeat gut stool analysis which did not show any Candida or other yeasts in my gut, so presumably the Nystatin did the job there. But my recent mycotoxins test showed I still have very high mycotoxin levels in my urine, so presumably there is still fungus present somewhere else in my body and which could be contributing to my symptoms.

My thought process is, I'll never know until I properly eradicate the source of the mycotoxins (assuming they're being produced endogenously).

If your question to the last question is affirmative, I gues you could benefit from a low carb diet? Have you ever tried it? Actually not just low carb, but also free of mycotoxins-containing foods such as coffee, nuts, cereals, etc.? If you got MCAS after Nystatin it does point to food allergens, and a elimination diet could help (such as the Whals diet for MS or a complete carnivore diet as used for autoimmunity and brain cancer).
Yes I have, I've tried pretty much every diet going and none showed any significant improvement unfortunately. I've done keto, carnivore, vegan, etc. I suspect part of the problem here is the MCAS which makes foods so difficult.

As for the MCAS itself, I'm pretty sure I already had it well before the Nystatin, it just wasn't as severe. It worsened during my time on the Nystatin but in truth it had been worsening consistently over a number of years so I'm not sure I can pin it exactly on the medication.

Unfortunately an elimination diet doesn't help with my MCAS; I react to literally everything.

If your respond positively to the first question, then do treat it. I've seen a couple of close cases improve tremendously (and many on FB groups). And do research CIRS when energy allows. There's just too many things intertwined with ME/CFS to not be at least a subset (actually only a 7% of CIRS patients are caused by mycotoxins according to Shoemaker. The rest can be Lyme or any other infection or toxin).

I hope you figure out if this is a proper treatment for you!
I will, thank you. I intend to attack the mycotoxins as soon as I can get the MCAS under control. I haven't actually been tested for Lyme, perhaps this should be next on my agenda.
 

nerd

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Histone deacetylase inhibition as an alternative strategy against invasive aspergillosis

Lamoth F, Juvvadi PR and Steinbach WJ (2015) Histone deacetylase inhibition as an alternative strategy against invasive aspergillosis. Front. Microbiol. 6:96. doi: 10.3389/fmicb.2015.00096

Invasive aspergillosis (IA) is a life-threatening infection due to Aspergillus fumigatus and other Aspergillus spp. Drugs targeting the fungal cell membrane (triazoles, amphotericin B) or cell wall (echinocandins) are currently the sole therapeutic options against IA. Their limited efficacy and the emergence of resistance warrant the identification of new antifungal targets. Histone deacetylases (HDACs) are enzymes responsible of the deacetylation of lysine residues of core histones, thus controlling chromatin remodeling and transcriptional activation. HDACs also control the acetylation and activation status of multiple non-histone proteins, including the heat shock protein 90 (Hsp90), an essential molecular chaperone for fungal virulence and antifungal resistance. This review provides an overview of the different HDACs in Aspergillus spp. as well as their respective contribution to total HDAC activity, fungal growth, stress responses, and virulence. The potential of HDAC inhibitors, currently under development for cancer therapy, as novel alternative antifungal agents against IA is discussed.
I'm beginning to believe that HDAC is the missing link between all. It can explain why various pathogens can trigger CFS/ME and how it triggers and maintains the IDO trap.
HDACs also play a central role in the pathogenesis of cancer, HIV, and even aging itself if you consider aging a disease.
 

Wishful

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But my symptoms first arose after a few days of taking it, suggesting the reaction was in fact due to (1) the Nystatin killing the yeast, (2) the yeast toxins entering the bloodstream (3) the toxic load increased to the point where it overloaded the immune system, causing a reaction.
Fact 1 is reasonable. Fact 2 is just guessing though. Killing yeast could do all sorts of alterations in the intestines (and elsewhere) without involving mycotoxins, so 'toxins entering the bloodstream' is just one of many possible mechanisms. I'm not saying that it's wrong; just that it's lacking in evidence that it's the right explanation. One possible test would be to have serum mycotoxins measured before taking nystatin, and then after taking if for a while.
 

hb8847

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Fact 1 is reasonable. Fact 2 is just guessing though. Killing yeast could do all sorts of alterations in the intestines (and elsewhere) without involving mycotoxins, so 'toxins entering the bloodstream' is just one of many possible mechanisms. I'm not saying that it's wrong; just that it's lacking in evidence that it's the right explanation. One possible test would be to have serum mycotoxins measured before taking nystatin, and then after taking if for a while.
It's what was relayed to be by my Gastroenterologist at the time and has since been backed up by others. I think Herx reactions are a fairly standard process when killing some gut microbes, particularly candida, because it's almost impossible to prevent their reabsorption into the blood.

And the yeast toxins aren't necessarily mycotoxins (like Ochratoxin etc) but more things like acetaldehyde which wouldn't appear on a mycotoxin result.
 

Pyrrhus

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Histone deacetylase inhibition as an alternative strategy against invasive aspergillosis

Lamoth F, Juvvadi PR and Steinbach WJ (2015) Histone deacetylase inhibition as an alternative strategy against invasive aspergillosis. Front. Microbiol. 6:96. doi: 10.3389/fmicb.2015.00096
That's a fascinating idea. The key question here is: what would be the side effects of histone deacetylase inhibitors on human cells?
 

nerd

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That's a fascinating idea. The key question here is: what would be the side effects of histone deacetylase inhibitors on human cells?
Same issue as with SIRT regulators (which are regulated by class III HDACs btw) in that you have to select the right ones to achieve the appropriate effect. Pan-HDACi have risks and side effects. Vorinostat might be a good example. The ideal effectivity depends on the dose and can't be generalized. There is also kind of a herxheimer-related risk in that the clearance of defective or infected cells can be responsible for the reduced reticulocyte production etc. It's just how apoptosis works. But it needs to be balanced out. For cancer and HIV patients, the risks clearly outweigh the risks, so they don't bother. I think the half dose or lower would be fine for CFS/ME patients because it would be a long-term treatment anyway and this reduces the risks quite a lot.

I didn't mention this study to suggest a HDAC inhibitor-only treatment. I think HDAC might be the reason why certain treatments like antivirals, antiparasitics, and antifungals don't work as well as they could. My suggestion is a combination of HDAC inhibition with a pathogen-specific treatment. And what this pathogen(s) are depends on the patient. But most of them are almost impossible to detect considering how difficult it is to get the appropriate tests as a CFS/ME patient. So I'm trying to develop a protocol with preferably oral or generic drugs and supplements that covers all of them in this post. But to be fair, I have doubts that I can find anything that works in the nerve system because you have to sacrifice safety if you want a drug to work there.
 

ChookityPop

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What is the best test for mold and mycotoxins? Urine test? Would it be possible to ship it to another country if they dont test for this where I live?
 

nerd

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Dr. Syed Haider mentioned mold toxicity and claims that Ivermectin helped patients with mold toxicity. I'm not sure to which degree he clarified correlation vs. causality though and if the patients actually met the ME criteria. But it's interesting that this seems to happen more frequently after the COVID-19 pandemic, besides the LHS.
 

ChookityPop

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Dr. Syed Haider mentioned mold toxicity and claims that Ivermectin helped patients with mold toxicity. I'm not sure to which degree he clarified correlation vs. causality though and if the patients actually met the ME criteria. But it's interesting that this seems to happen more frequently after the COVID-19 pandemic, besides the LHS.
Interesting!

What do you mean with "this seems to happen more frequently after the covid-19 pandemic, besides LHS"?
 

nerd

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this seems to happen more frequently after the covid-19 pandemic, besides LHS
They discuss the typical patient groups that he is facing recently. So, naturally, this includes Covid-19 and long hauler patients. But I find it surprising that a single practicioner has a group of mold toxicity patients out of a sudden. I'm sure mold toxicity isn't such a common diagnosis that it can be considered usual. So I suspect that something changed in these patients that made them susceptible to mold. An alternative explanation is the lockdown and that this could lead to increased mold exposure, possibly building up mycotoxins during the course.