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

Have you undergone treatment for Mould or mycotoxins?

  • No

    Votes: 27 75.0%
  • Yes, and it helped my CFS a bit

    Votes: 2 5.6%
  • Yes, and it helped considerably

    Votes: 3 8.3%
  • Yes, but it did not help

    Votes: 2 5.6%
  • Other

    Votes: 2 5.6%

  • Total voters
    36

hb8847

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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:

Detection of mycotoxins in patients with chronic fatigue syndrome

Over the past 20 years, exposure to mycotoxin producing mold has been recognized as a significant health risk. Scientific literature has demonstrated mycotoxins as possible causes of human disease in water-damaged buildings (WDB). This study was conducted to determine if selected mycotoxins could be identified in human urine from patients suffering from chronic fatigue syndrome (CFS). Patients (n = 112) with a prior diagnosis of CFS were evaluated for mold exposure and the presence of mycotoxins in their urine. Urine was tested for aflatoxins (AT), ochratoxin A (OTA) and macrocyclic trichothecenes (MT) using Enzyme Linked Immunosorbent Assays (ELISA). Urine specimens from 104 of 112 patients (93%) were positive for at least one mycotoxin (one in the equivocal range). Almost 30% of the cases had more than one mycotoxin present. OTA was the most prevalent mycotoxin detected (83%) with MT as the next most common (44%). Exposure histories indicated current and/or past exposure to WDB in over 90% of cases. Environmental testing was performed in the WDB from a subset of these patients. This testing revealed the presence of potentially mycotoxin producing mold species and mycotoxins in the environment of the WDB. Prior testing in a healthy control population with no history of exposure to a WDB or moldy environment (n = 55) by the same laboratory, utilizing the same methods, revealed no positive cases at the limits of detection.



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
 
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Is this not completely groundbreaking?!
that is: pretty mindblowing

and 55 people serving as controls had None? wow

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?
good point....no cause and effect here: just a correlation.

Given we don't get toxins out of our bodies well: this makes sense from that perspective.

I'm quite convinced I started out as an Eppstein Barr victim- but this illness changed recently in me....got worse, got more neurological. Collagen kept breaking down. More brainstem collapse and neck weakenings. Maybe.
 
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the body more susceptible to mould infection
The results could also mean the mycotoxins were consumed somehow- for instance nuts supposedly can carry aflotoxins, and this is partly why some people soak nuts before consuming them.
 

hb8847

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The results could also mean the mycotoxins were consumed somehow- for instance nuts supposedly can carry aflotoxins, and this is partly why some people soak nuts before consuming them.
Good point, although the Abstract does mention that "Exposure histories indicated current and/or past exposure to WDB in over 90% of cases", (WDB meaning water damaged buildings) so I feel the airbourne route is probably more likely? I have no idea how easy it is to get a mould infection via food though.
 
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Exposure histories indicated current and/or past exposure to WDB in over 90% of cases", (WDB meaning water damaged buildings)
Well at least thats a good indicator- I mean most people know when their home or office gets water damage.

I think some mold issues may be far more mysterious.

I did live in a water damaged place for 17 years. It just seemed to dry out well.
 

hb8847

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I looked that up: it says its for the skin only. You consumed it?
I did yes. It was prescribed by Dr Myhill who I was seeing for a few years. Her Nystatin procedure is outlined on her website here, she uses for gut related fungal issues as she said it doesn't get absorbed into the bloodstream.

My experience of Nystatin was as follows: initially I rushed into it gung-ho, and I reacted pretty badly for a day or two, but after the ill effects wore off I felt notably clearer in my head for the first time since developing CFS a year prior. She suggested it could be a Herxheimer reaction and the negative side effects were from killing off too much fungus too quickly and overwhelming by body with the toxins. (I now know I was also suffering from MCAS and so am particularly sensitive to toxins).

So, I went back onto the Nystatin and gradually built up, but I had to start incredibly slow. By the end of this 9 months I had gone from practically bed-bound and having POTS to being considerably mentally clearer and going for an 30min walk every day. Although I was a long way from a full recovery I felt like I had found the key to my illness and just had to keep going with it.

Alas, like I said, my food sensitivities were getting worse in spite of all this recovery, and this ended up getting bad enough that I would get a reaction every time I ate anything. And this ended up reversing the CFS gains I made and rendered my largely bedbound again. But, again, I did make lasting improvements in spite of this: my POTS still hasn't returned and I've still retained the improved mental clarity I achieved after the year on Nystatin, and after 6 years attempting to treat CFS Nystatin is still the treatment with which I've had easily the most success.

What's annoying for me is that since the food reactions got out of control (which I now know to be MCAS) I've been unable to keep trying to get rid of the mould, either by finishing the course of Nystatin or through other mycotoxin related treatments. I am however thinking of reaching out tonight to some Mould specialists to see what they say, and whether they've had any luck in treating mycotoxins in conjunction with MCAS.
 
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hb8847

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Here is a follow up paper by the same author Dr Brewer. It relates to treating these patients who had high levels of mycotoxins in their Urine.

Abstract: Exposure to mycotoxin producing mold and mycotoxins can be associated with numerous adverse health consequences. We previously reported that patients with chronic illness frequently had a history of prior exposure to water damaged buildings (WDB) and mold. Additionally, the vast majority of these patients had mycotoxins present in the urine. We have postulated that the mycotoxin producing molds were likely harbored internally in the sinuses of these patients. In the present analysis, patients with chronic illness and a positive urine mycotoxin assay were treated with intranasal antifungal therapy, either amphotericin B (AMB) or itraconazole (ITR). AMB was associated with local (nasal) irritation adverse effects (AE) in 34% of the cases, which resulted in discontinuation. In patients that remained on therapy without AE, we found that 94% improved clinically. Additionally, we found that the urine mycotoxin levels decreased substantially in patients that improved on therapy. Similar findings were seen with ITR, however the number of patients treated was much smaller.
So, it seems that around 1/3 of said patients could not tolerate the treatment, but of those who could 94% improved to a certain degree.


Here is Dr Myhill's section on mycotoxins. She posits that of those 34% who couldn't tolerate the treatment, a certain percentage of those were likely experiencing a Herx reaction due to fungal die-off, specifically:

"The 34% of ME patients who could not tolerate the intranasal antifungals suffered two sorts of adverse events:
  • Those local to upper airways such as burning, congestion, nosebleeds, stuffiness, rhinorrhoea, and nasal/sinus pain.
  • Systemic reactions such as exacerbation of baseline symptoms such as fatigue (most common), headache, body aching and cognitive dysfunction.
These are typical die off or Herxheimer reactions - interested readers should see the Wikipedia page on Jarisch–Herxheimer reactions. Knowing what we know now I would have encouraged those patients to plug on with the therapy, perhaps reducing the treatment to a level that was tolerable then increasing. Indeed, Brewer noted that in those who did stick the treatment, the reactions subsided within 4 weeks."


Interestingly though she takes a different approach as to the treatment; Dr Brewer used an antifungal but Myhill uses Iodine. If anyone has any experience using this for mould I'd be very interested to hear about it.
 
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hb8847

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what helped you detox mold? the nystatin? I'm not clear what caused you to move mycotoxins.
Hi @aquariusgirl , sorry if I wasn't clear.

Yes the Nystatin helped me detox mould. It was powdered Nystatin that I ingested, as per Dr Myhill's guidelines (linked above).

She decided to prescribe Nystatin because a stool test had shown I had 2 strains of fungus in my gut (Candida and something else that began with R) which I vaguely recall her saying was excessive. It also showed a bunch of other things wrong including general bacterial dysbiosis.

Basically Dr Myhill first decided to try and treat with antibiotics (paromomycin and doxycycline) but this didn't help. Her next plan was to have a go at the fungus (it seemed more out of hope than certainty) so prescribed the Nystain, and fortunately it started to help, but as I've said I had to go incredibly slowly with it.

(I know now that I was already dealing with Mast Cell Activation Syndrome (MCAS), probably caused in some part by the fungus, and hence why I had to go so slowly with the Nystatin. If I could go back I would look to address the MCAS first as it would presumably have allowed me to go much faster with the Nystatin.)

Then about 9 months in to the Nystatin treatment I had to stop, in spite of improving considerably, because my food intolerances (ie, MCAS) had become really bad and that had to become my sole focus.

(As to why that worsened in spite of my mould situation and CFS improving, I have no idea, but this worsening also caused me to doubt whether I had actually improved from the Nystatin at all. I'm now pretty sure it did help because, like I said, my POTS has gone and my mental clarity improvements have remained, and it seems now my CFS is triggered by the food reactions. But this did confuse me, and still does.)

I then had to find a new Doctor to deal with these food intolerances. I had another stool test which showed NO fungal species in my gut. So I just assumed the Nystatin did the trick and sort of got over the idea of going back onto it. Indeed, this new Doctor's focus was on things like SIBO and gut dybiosis, not fungus.

That was about 3 years ago, and I've since continued to struggle really badly with food (which triggers my CFS), and I was unable to complete my new Doctors plan to address my gut dysbiosis which he suspected was the root cause.

Eventually I found another Doctor who had an idea it might be MCAS, and I tested positive for that earlier this year.

I subsequently began to research MCAS and found there was a strong link between that and mycotoxins (ie, mould), and because of my history with mould I assumed it would be a good idea to get that tested, just in case. But because I'd already been on Nystatin so long, and stool tests had showed no fungus in my gut, I didn't think it would be an issue.

Then the mycotoxin results came back really high and I was shocked.

I now feel like I have to assume there is still mould in my system, just maybe not in the gut, and it's the reason I haven't gotten better, but like I said I can't do anything about it until I have my Mast Cells under control, or at least I don't think I can. I'm now reaching out to mould specialists in the UK to find out.

Sorry this is so wordy, I just wanted to be exactly clear what I'd been through.
 
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This isn't a good comparison though. In order to understand anything about mycotoxins and ME you would need to compare healthy controls who also had exposure to WDB. Otherwise it just tells you that some people who lived in wdb had mycotoxins in their urine afterwards. Not all of them reported exposure to wdb but for the ones who didn't report, it either went unnoticed (this happens) or it was from a different source. The healthy controls reporting no exposure also isn't reliable because toxic mold isn't always noticeable. Either way, with a lot of self reported exposure to wdb in the group that showed mycotoxins, the connected between that and mycotoxins in the urine is the only connection that be drawn.

I can't remember if I heard that those who aren't so affected by toxic mold don't end up retaining the mycotoxins and are able to get rid of them, or that many affected and unaffected retain mycotoxins but their circulation in the body affects some more than others. That study doesn't answer these questions but there may be others that do.

To clear up the distinction: Mycotoxins aren't mold. They are chemical byproducts of toxic mold. But you can have mycotoxins in your body alone or both mycotoxins and mold. Mycotoxins I know for sure but the mold being in the body too sometimes I heard from my doctor who treats it, so I'm not sure. I've had a few doctors who treat toxic mold. It's not my focus right now but I do want to recheck my levels to see if they're still there.
 
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Wishful

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Surely it provides a massive indication that mycotoxins are a direct cause of CFS in a huge number of patients?
No, it indicates that further research is required. It could mean a problem with the research: how the subjects and controls were selected, how the data was processed, etc. It could mean that PWME have reduced ability to control fungal infections, or to eliminate mycotoxins, or to keep those toxins from passing through our protective membranes. I'm sure there are a lot of other possible explanations. The research doesn't directly imply that mycotoxins actually influence ME severity. Definitely more research needed.
 

hb8847

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Thanks for your reply @PisForPerseverance

This isn't a good comparison though. In order to understand anything about mycotoxins and ME you would need to compare healthy controls who also had exposure to WDB. Otherwise it just tells you that some people who lived in wdb had mycotoxins in their urine afterwards. Not all of them reported exposure to wdb but for the ones who didn't report, it either went unnoticed (this happens) or it was from a different source. The healthy controls reporting no exposure also isn't reliable. Either way, with a lot of definite history of wdb in the group that showed mycotoxins, that's the only connection that can be drawn.
If I'm understanding you correctly, you're saying that the results are unreliable because the control group is controlling for not one but 2 factors, both for "good health" and for "not having lived in a Water Damaged Building (WDB)". And yes I think I see your point. Surely it would have been more helpful had they just found a "healthy" group without any reference to WDBs at all.

That said, surely the 93% incidence of mycotoxins amongst CFS sufferers is too high a statistic to dismiss on its own? Unless the study went out of their way to find CFS sufferers who'd lived in WDBs, but that seems unlikely and it wasn't mentioned anywhere that they did.

But yes I guess it's true the report could just be providing a link between living in a WDB and having raised mycotoxin levels in your body, while saying little about whether that impacts your underlying health.

Mycotoxins aren't mold. They are chemical byproducts of toxic mold. But you can have mycotoxins in your body alone or both mycotoxins and mold.
Could you please elaborate?

My understanding is, mycotoxins are created by mould. So, if there are mycotoxins in your urine, how could there not be a mould source within the body that is producing said mycotoxins? Where else could they be coming from?
 
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For those interested in investigating and treating toxic mold, I wholeheartedly recommend dr neil nathans book. From a post I wrote in another thread about toxic mold,
his 2018 book, outdated now, described in detail how he diagnoses and treats mold toxicity. Does the same for Lyme disease and also talks about MCAS, methylation, and various topics. I read this in the past and it was useful to me because I do/did have mold toxicity. And it was the first time learning more about MCAS, before getting treated for it. He was only just learning about MCAS himself though, so keep that in mind.

Keep in mind that he doesn't write with people with ME in mind specifically at all. He co authored dr naviauxs 2016 ME study on the cell danger response, but is not ME (as in PEM versus just fatigue and weakness) focused and we should be warned of that when reading his material. I do not endorse some of his views but most of what's in the blog posts I posted dont pose a conflict for those with ME I believe, at least generally speaking.
These are the blog posts I was talking about
10 common mistakes in the diagnosis and treatment of mold toxicity

Detoxification of Mycotoxins by Pathway

Potentially Groundbreaking Information for Treating Mold Toxicity

@hb8847 I'll reply to your questions from that thread but for anyone who suspects they might be affected by toxic mold from the past and can't get a test and don't have a doctor to help, you can learn from the book to use non prescriptions binders, and see if you feel any better over time. There are other treatments besides binders and using the right binders doesn't mean it'll necessary help on its own, but it's something you can do that's pretty benign if you go slowly as it instructs in the book. I don't think self treatment is actually talked about, but you can glean from good explanations whether it's a probably ok thing to do on your own. From my memory, plenty of considerations are discussed for each treatment discussed in the book. Like other stuff it may be important to take care of first, mcas, gauging whether it's a good idea to continue based on response.

For those who want to use non prescriptions binders, use the chart from "detoxification of mycotoxins by pathway", posted last year. It's updated.
 

Wishful

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So, if there are mycotoxins in your urine, how could there not be a mould source within the body that is producing said mycotoxins? Where else could they be coming from?
Absorbed through various membranes (nose, mouth, skin, GIT). Moulds exist all over the place, so we're constantly in contact with them. Something in ME could be allowing more transport through membranes or reduced elimination of them before reaching the kidneys.
 
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My understanding is, mycotoxins are created by mould. So, if there are mycotoxins in your urine, how could there not be a mould source within the body that is producing said mycotoxins? Where else could they be coming from?
I have no idea. Maybe I used to have an idea but forgot. Maybe the same way other toxins are found in circulation? I don't know how they self perpetuate though. For any toxin. Maybe with mycotoxins there is a mild source in the body. I have conflicting information with what I've been told in the past by different doctors. My memory is also hazy. The science of toxic mold affects in a human body is probably not that robust either.

See if you can find out if there must be a mold source or not. If you need help let me know. Why it matters is because treating mold and treating mycotoxins are different. One is a sort of living thing. The other is toxins. And getting rid of mold won't get rid of mycotoxins already present. So need to do both if both present.
 

hb8847

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Absorbed through various membranes (nose, mouth, skin, GIT). Moulds exist all over the place, so we're constantly in contact with them. Something in ME could be allowing more transport through membranes or reduced elimination of them before reaching the kidneys.
It's true that we encounter moulds in our normal environment, but not in large enough numbers to provide statistically significant readings on a urine mycotoxin report.

And if you're right that "something in ME could be allowing more transport through membranes" then surely that is something significant to investigate in itself.