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
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This quote reminds us that "mold" and "mildew" are just common terms for fungal growth, and that a fungal infection in the body would lead to a much higher toxin exposure than merely inhaling fungal spores from the environment.

Also remember that fungi are normal parts of the human microbiome, usually in the form of yeast. These fungi naturally live on our skin and in our digestive system.

Hope this helps.
Herpes viruses are also normal part of the human body. That doesn't mean that an immune system reacts to them in a negative way
 

nerd

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I found Erik Johnson's mold and cyanobacteria biotoxin theory of the Lake Tahoe ME/CFS outbreak very interesting, and along the lines of Erik's ideas, I proposed a generalized dual-factor etiological theory for ME/CFS, in which ME/CFS is triggered when someone catches an ME/CFS virus while simultaneously being exposed to immunosuppressive or immunomodulatory factors like mold, pesticides, cyanobacteria, major chronic stress, corticosteroids, etc. See also this post.
I have cyanobacteria and legionella in the water.

Herpes viruses are also normal part of the human body. That doesn't mean that an immune system reacts to them in a negative way
I think this is only certain for HSV. Human gamma-herpesviruses might origin from small rodents.
 

Hip

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Out of interest @Hip , you mention that you stopped the antifungal nasal treatment after experiencing a Herx reaction; why?
I am not sure why I stopped the N-acetyl-cysteine and EDTA nasal sprays; it may have been because I experienced an exacerbation of mental health symptoms (which often happens when I try new drugs or supplements), so that I stopped temporarily, and then forgot to restart.

I also tend to get disheartened if an experimental treatment does not start showing signs of benefits after a few weeks (unless I have been told by a doctor or other patients that it requires months of treatment to be effective).

Add to the fact that I have not had any major mold exposure I know of, and my results on the visual contrast sensitivity test do not indicate exposure to mold or biotoxins, I guess I started to view the Brewer protocol as a long shot.


Looking at my notes, I started with a disodium EDTA 0.5% nasal spray, and that proved too strong, so I diluted it down to a disodium EDTA 0.05% spray, and I think I was relatively OK with that. After, I then switched to NAC 0.5%.

This is the study which found that NAC is equally effective as biofilm buster as EDTA.




If you want to try making your own disodium EDTA 0.5% or 0.05% nasal spray, it's easy to make one. You can buy food grade disodium EDTA powder on Amazon or eBay at around £5 for 100 grams of powder.

Then you just have to get an empty nasal spray bottle; I use a 50 ml bottle.

You fill the bottle with 50 ml of distilled water, and add 250 mg (quarter gram) of disodium EDTA powder to make a 0.5% solution. Or if you want the weaker 0.05% solution, add 25 mg of disodium EDTA.


It is a good idea to add 450 grams of pure sea salt (without any additives) to the 50 ml of water, to make it into physiological solution (you don't have to do this step, but it makes the spray more comfortable in the nose if the spray salinity is equal to body tissue salinity).


If you have a prescription from your doctor, you can also buy a 1% EDTA nasal spray from Woodland Hills Pharmacy in the US, who supply nasal sprays for the Brewer and Shoemaker anti-mold protocols.
 
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hb8847

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I also tend to get disheartened if an experimental treatment does not start showing signs of benefits after a few weeks (unless I have been told by a doctor or other patients that it requires months of treatment to be effective).
Yeh I feel you.

Does the Herx reaction not indicate though that something was working? Do you think it might it be worth trying the EDTA again, just at a lower dose, on the off chance the NAC wasn't having the same effect? By the way I'm absolutely not suggesting you should, of course whatever you do with your health is completely up to you, I'm just interested in your thought process here.

If you want to try making your own disodium EDTA 0.5% or 0.05% nasal spray, it's easy to make one. You can buy food grade disodium EDTA powder on Amazon or eBay at around £5 for 100 grams of powder.
That's kind, I'm not able to take these sort of medications for now though - any fungal or bacteria killing medication (even probiotics) gives me a really awful Herx reaction no matter what the dose. I think it's caused by my MCAS, so the plan right now is to try and calm down my immune system so I can eventually start these sort of treatments again.

Once I do I'll definitely look into this nasal spray. I've also been provided Iodine drops by Dr Myhill which apparently work just as well.
 
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Hip

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Does the Herx reaction not indicate though that something was working? Do you think it might it be worth trying the EDTA again, just at a lower dose, on the off chance the NAC wasn't having the same effect? By the way I'm absolutely not suggesting you should, of course whatever you do with your health is completely up to you, I'm just interested in your thought process here.
I might try it again now that this discussion has reminded me. Quite often I see a treatment come up on this forum that I've tried before and forgotten about, and then I may decide give it another go. That's one of the benefits of keeping an eye on PR, as you do get reminded about things that you have forgotten.

I cannot be sure that the side effects from the EDTA nasal spray is due to a nasal bacterial/mold die off Herx reaction, though; it might just be due to the EDTA itself having some adverse effect.


I should add that in my case, the ME/CFS-triggering virus I caught, coxsackievirus B4, created a chronic nasal inflammation / mild congestion that has never gone away. So there could be some low-level viral infection in my nasal mucous membranes. Not sure how that factors into the picture of a possible nasal mold infection.
 

Wishful

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To me the fact that you have ME and have also lived in a mouldy building would seem like a red flag in itself.
No, I've experienced vast numbers of 'maybe it could possibly trigger ME' factors in my life. There's nothing I see about mould (or toxins) that makes it any more likely than the hundreds or thousands of other possible factors. There was no significant time correlation between the mould exposures and ME triggering, and no noticeable correlation between mould exposure and symptom severity after triggering ME.

If mould toxins were a factor in my ME, I'd expect more correlation between severity and mould exposure. Eating peanuts or other foods commonly carrying mould toxins would likely affect ME symptoms if those toxins affected ME.
 

Wishful

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Does the Herx reaction not indicate though that something was working?
Early in my ME, I read about candida infections and gave the treatment a try. It made me feel worse, so I thought I was on the right track. However, after several months of this, there was no change in the worsening. Was it herx? Was it a response unrelated to microbial infection? I don't know, but it didn't seem worth continuing.
 

hb8847

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No, I've experienced vast numbers of 'maybe it could possibly trigger ME' factors in my life. There's nothing I see about mould (or toxins) that makes it any more likely than the hundreds or thousands of other possible factors. There was no significant time correlation between the mould exposures and ME triggering, and no noticeable correlation between mould exposure and symptom severity after triggering ME.

If mould toxins were a factor in my ME, I'd expect more correlation between severity and mould exposure. Eating peanuts or other foods commonly carrying mould toxins would likely affect ME symptoms if those toxins affected ME.
Well this is exactly the point I'm making, for many people with mould issues there does not seem to be a correlation between mould exposure and symptom severity, so I wouldn't discount it on that basis alone.
 
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hb8847

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Early in my ME, I read about candida infections and gave the treatment a try. It made me feel worse, so I thought I was on the right track. However, after several months of this, there was no change in the worsening. Was it herx? Was it a response unrelated to microbial infection? I don't know, but it didn't seem worth continuing.
I imagine it's largely a judgement call whether it's a Herx or not.

I can only speak about my own case, but there were reasons my doctor was convinced mine was a Herx and not an adverse reaction to the medication itself.

Firstly the medicine was Nystatin powder - this is not bioavailable (as in, it doesn't get absorbed from the intestines into the blood stream), and so the likelihood of suffering an adverse reaction to the medication alone is very small.

Second, the reaction was delayed. If it was an issue with the medicine itself I would begin to feel worse almost immediately. 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. This would obviously take longer than a standard allergic response to the medication.

Finally, the symptoms themselves were merely an exacerbation of the ones I was already getting - more CFS, more fatigue, more body aches, more brain fog, etc. If the response was allergic it's more likely to be other things.
 
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I found Erik Johnson's mold and cyanobacteria biotoxin theory of the Lake Tahoe ME/CFS outbreak very interesting, and along the lines of Erik's ideas, I proposed a generalized dual-factor etiological theory for ME/CFS, in which ME/CFS is triggered when someone catches an ME/CFS virus while simultaneously being exposed to immunosuppressive or immunomodulatory factors like mold, pesticides, cyanobacteria, major chronic stress, corticosteroids, etc. See also this post.

In this dual-factor hypothesis, it's the immunosuppressive/immunomodulatory factors which facilitate the virus to trigger ME/CFS.
Interestingly some bioweapons programs involved a dual factor setup , similar to what you describe ..

However I'm not implying that me/cfs is due to bioweapons, or conspiracies , just that this is proof of concept.

This is covered in this episode in detail, as well as the Tahoe outbreak https://soundcloud.com/headlessyouthpodcast%2Ftribulations-25-ft-allegedlyzo
 

Wanja

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that is: pretty mindblowing

and 55 people serving as controls had None? wow



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.
I have the exact same problem!

I got bedridden from being mild in the kast 5 weeks with all the neurological, brainstem an neck issue! Is there anything do about it?
 

lenora

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OK....this is just rather primitive; no proof of anything but here goes:

I was telling Rod (hubby) almost 77 in fairly good health, about smelling a strange vinegar smell a lot. He said that he gets the smell of sweaty feet....OK, similar smells when you think of it.

He said that he uses a cotton swab with peroxide on it and cleans his nostrils out....and the smell disappears, along with some of his allergies (has had them for well over 50 yrs.). I'm going to try it as soon as I can....as it may be even a temporary relief system for the body. Yes, molds and fungi are present on many things, and I think the worse allergies become the more they accumulate in the nostrils.

It made a certain amount of sense. I can't do it at the moment b/c of another problem, but will get back to you to let you know if it helps. It's certainly not going to hurt anyone if the swab isn't pushed too far up into the sinus cavity for example. Molds are especially bad if I pull out the Xmas decorations....I can hardly breathe and noticed that a number of years ago. No decorating this year. Yours, Lenora.
 

Hip

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Interestingly some bioweapons programs involved a dual factor setup
This dual-factor setup was also observed in a mouse model of Crohn's disease.

Well in fact for Crohn's it was a triple-factor scenario: this study found that norovirus infection can trigger Crohn's, but this only occurs when both a specific gene variant is present, and when a certain toxin has damaged the gut.

So they were able to cause Crohn's in mice by a triple-factor trigger of virus + gene + toxin.
 
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Maybe some forms of CFS are due to a cycle of mold impairing immunity, mold reproducing, and so on.

If someone is already fighting a viral infection and gets exposed to mold at the same time, maybe the mold ends up staying after the virus has already been fought off.

From personal experience, monolaurin a few months ago caused me to experience strange neurological cardiac symptoms, which I only developed fulltime just recently. Though it wasn't nearly to the same degree as I have now, and it was temporary.
 
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It is a free online eye test that you can do yourself in a few minutes. It helps determine if you are exposed to mold. More info at bottom of this earlier post.
Oh....thank you.

I did take this test which indicated, if I recall, that I'd lost 60%of my acuity. It was very distressing.

So eye doctors do NOT actually use this test it seems (I keep going and get no help from them)
 

nerd

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I'm not sure why it took me so long to remember. I already tried treatment with oral Nystatin and pineapple juice for a few months when I thought I might be systemic candida. I didn't notice any difference at the time.
 

hb8847

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I'm not sure why it took me so long to remember. I already tried treatment with oral Nystatin and pineapple juice for a few months when I thought I might be systemic candida. I didn't notice any difference at the time.
The dose might have also been a factor? And whether the Nystatin was bioavailable? The dose I was on was considerably higher than what's usually prescribed (8mil iu versus 100k iu).