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

nerd

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I guess that there are two possible sources for this.

First, there might be chronic exposure in the environment of the affected, e.g. the living space.

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. I don't think antifungals work because it's just the toxins and not an active fungal infection unless the patient also has Candida, etc.

Chronic exposure to mycotoxins can change the innate immune system. In order for this to reverse, the treatment needs a long time.
 

Pyrrhus

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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."
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.
 

hb8847

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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.
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?

I have seen much spoken about mould on foods but never anything to suggest this could affect ones level of internal mycotoxins. Surely if they were they would have shown up on at least a few of the "healthy" controls in the Brewer study.
 

hb8847

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Hi @Hip , thanks for replying.

I saw you featured a lot on that PR thread I linked from the Research section that initially discussed the results of this study (linked here).

Over time it seems to veer off track a bit but the discussion seemed pretty good with most people fairly positive about the validity of the study and the results.

Given all that I must say I'm a bit surprised that mould and mycotoxin treatment is not a bigger thing on this site. I know it's a small sample size but currently almost 90% of people who've replied to the poll question on this thread have said they haven't even tried to treat for it, and this is in the Mould section of Phoenix Rising! I have to say that surprises me, given some of the treatments people put themselves through.

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? 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.

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. That's interesting. Did you find out any more about this, did your mycotoxin levels fall, have you had them tested before and after? Did you continue with the nasal spray, what was the upshot of it, did you end up feeling any better?

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.
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.
 
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hb8847

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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.
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.

Link here
 

nerd

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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?
Not that I know. But the definition of leaky gut is that there is a general uptake of all kinds of toxins in the food. Anything is resorbed, if it normally belongs into the blood or not.

Or that leaky gut would permit more absorption of mycotoxins than a healthy gut?
Since it's the definition of leaky gut, I would implicitly assume so. There isn't a lot of research on the topic. Interestingly, one study identified it reversely, namely mycotoxins causing leaky gut (10.1007/s00204-016-1794-8). I assume it's also a trap scenario in that a single high exposure to mycotoxins or any other pathogen causes increased permeability in the gut and from there on, any small amount of toxins can enhance the disease.

I wonder, has anyone ever be cross-diagnosed for Chronic Inflammatory Response Syndrome (CIRS), since this would be the CFS/ME equivalent with mycotoxic causality? There are test panels for it, and also a visual test as an indication marker.

When you also do mycotoxin urine tests and mycotoxin antibody tests, you end up with over 1k$ of total costs. No idea what's so special that they demand so much for just a few simple tests. I think it's overpriced because they know that there are barely any providers. In Europe, I don't think there is any contract provider. But you can find so many providers for animal/food mycotoxin testing, like it's a common thing on farms.
 

nerd

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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.
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.
 

Hip

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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?
I think there were concerns over the validity of Dr Joseph Brewer's study finding mycotoxins in the urine of ME/CFS patients.

Also, I believe there were concerns over the validity of the mycotoxin lab test which Dr Brewer used.

I don't have much knowledge regarding mycotoxin testing, so I am not the best person to ask about this.

But generally speaking, a lab test that you can buy may not always be properly validated, and may be experimental, even though it is offered to the public. We see this with Lyme testing, where there are only certain tests which are accepted by the CDC.

I've got some links to the criticisms of the Brewer paper and mycotoxin tests, but unfortunately I don't really have enough knowledge of mycotoxins to know how valid the criticisms are:



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.
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.

In my case, I had a severe chronic exposure to organophosphate pesticides just before I caught my ME/CFS-triggering virus, and organophosphates are a known risk factor for ME/CFS, possibly because again they suppress the immune response and allow the virus to proliferate more in the body during the acute phase of the viral infection.


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.



Did you continue with the nasal spray, what was the upshot of it, did you end up feeling any better?
I quickly stopped the EDTA nasal spray, because of the Herx side effects. I then switched to a N-acetyl-cysteine (NAC) 0.5% nasal spray, which did not cause these side effects, even though I read a paper saying that NAC is equally effective as EDTA for biofilm busting.

I only tried the NAC spray for a couple of weeks, and noticed no benefit, so I stopped (perhaps prematurely).




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.
You may also like to look into Dr Ritchie Shoemaker's theory of a mold- or biotoxin-induced illness. He calls this illness chronic inflammatory response syndrome (CIRS). The CIRS illness has very similar symptoms to ME/CFS.

The difference between CIRS and ME/CFS seems to be that the former does not have a viral trigger like ME/CFS usually has, but may just be caused by pure mold exposure. Whereas ME/CFS involves a viral infection, but mold exposure may be a factor as well in some patients.

CIRS however has not really been taken up by any other researchers other than Shoemaker. So it's not considered a recognized disease.


May be of interest:
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
Source: here.
 
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hb8847

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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.
This is a good suggestion, although I'm wary of adding too many options. I don't want to detract from the main aim which is to see if the experiences of CFS sufferers on PR replicate Brewer's test results which showed 93% of his CFS patients tested positive.

I've added some text to the intro asking people to specify which test they took.

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?
 
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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.
I'll walk back my point a bit and say that the idea of mold being the key ME/CFS pathogen is itself sound, but even then, it's still just a theory. A 93% incidence rate of mycotoxins is suggestive, but there are so many possible explanations for the significance of this finding that it may be hard to continue the discussion without more evidence. I would love to see some sort of mechanistic explanation for how mycotoxins specifically could cause the immune disturbances seen in ME/CFS.

Another good way to substantiate the mold theory would be for people to have success with mold-specific treatments. The second Brewer paper you posted is a good start on this, though as @Hip posted, there are some criticism of the methods and of course it's kind of a small sample size. I was a little surprised to see Amphotericin B used as a treatment, given its notoriety for causing side effects, often severe. It's usually administered IV though, so maybe intranasal is different.

@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.
 

nerd

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And of course all of that presumes that the gut is what's being affected by mold, since Nystatin is not orally bioavailable.
Thanks for pointing this out. Low-level fungi in the gut could also produce sufficient mycotoxins when leaky gut is present.

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.

I wonder if candida vaccines will make any difference.

Are there any downsides to using Nystatin for such a long time?
There is a small risk for resistances when prophylactic treatment is interrupted.

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?
I mean if CIRS was diagnosed as such by a physician or if they just did the tests at home. It's just the indication by symptoms, which are very similar to CFS symptoms, the CIRS panel, and the VCS test.

Regarding the distinction of CIRS and CFS/ME, it's this general issue in medicine that diseases aren't cross-evaluated.

This actually is the reason why COVID-19 treatments such as Remdesivir were completely mistargeted at first, because they treat the infection but not the post-viral disease that COVID-19 is. If they had acknowledged the crossing of COVID-19 with serotonin syndromes, any serotonin suppressing medication would have been indicated. Instead, it was observational data from psychiatric facilities that gave the system indication that SSRIs help, so they skipped ahead to trials on SSRIs. Imagine how many lives could have been saved when they would have identified COVID-19 not as a viral disease but as a serotonin disease at first.

The problem also exists for immunological diseases such as MG, CFS, SLE, MS, sleeping sickness and is even worse for syndromes. Are they the same or are they different? Post-viral syndrome, CFS, long hauler syndrome, pain syndrome, IBD syndrome. CIRS is just another of these. It's this outdated idea to identify diseases based on symptoms and not based on core pathology.

Tests are developed based on these outdated disease definitions, without cross-evaluation. This means, in the end, that they only show that a test is sensitive for a condition, but not that it is specific for it. Their calculations of sensitivity and specificity are based on assumed disease groups vs. healthy controls. But they don't compare it with other disease group controls. If they tested against multiple variants of controls, the real specificity might turn out completely unspecific for the distinction of multiple diseases. So you would need additional tests to clarify which of the diseases it really is.

But our current medicine system tries it differently. They ask you about your symptoms and then assume that this is sufficient to rule out any alternative conditions. When they think a viral infection diagnosis is indicated, and it comes back negative, they will conclude that you are perfectly healthy. Symptoms can not replace unspecific testing because they are even less specific and most doctors don't even know most of the diseases and how to distinguish them based on symptomology.

And this is the reason why we won't find an answer to the question if CIRS is just an overlapping condition to CFS, as fibromyalgia is, or if it's just the same, or if they all share the same pathology, and could hence be termed as the same disease.
 

Pyrrhus

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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.
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.
 

hb8847

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@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
Hi @katabasis ,

So my experience with Nystatin was as follows:

At the time I was under the care of Dr Sarah Myhill, and her focus on mould/fungus in my case was prompted by a Stool Sample analysis which showed two different strains of yeast.

So, her prescription of Nystatin powder (which as you say does not get absorbed into the blood) would be focused solely on yeast present in the gut.

I followed this plan as outlined on her site, although I had to start at a considerably lower dose than the 1/2 tsp which was her "starting dose", because when I tried it at this level after a few days it completely wiped me out - all my CFS symptoms worsened, I was completely bedbound, brain fog, the lot. But, once I recovered from that after a few days I was feeling notably clearer mentally than I had been previously.

I went back to her with this info and she was convinced this was a Herx reaction to the "die off" of yeast, with the toxins overwhelming my immune system. So I went back on the Nystatin but cut down the dose; I think I was on something like 1/8 tsp per day to begin with.

The Nystatin was provided to me in powdered form, and as outlined on her site:

"A 5ml plastic teaspoon is needed for measuring the dosage. This contains 8 million i.u. of pure nystatin powder. This is much more than in the NHS prescribed liquid nystatin, which contains 100,000 i.u. per ml".

So evidently her treatment regime entails doses considerably higher than what people may have previously received in other forms.

Over time I very gradually built up this dose, I think after about 9 months was up to the full 2.5 tsp (so roughly 20m iu daily), and like I said during this period my CFS improved considerably.

I should be clear, I was also doing other treatments during this time (like I was on her supplement regime which included things like B12 and Vitamin D at high doses, and I was also on high dose Vitamin C) so I can't be 100% sure the improvements were due to the Nystatin. But, in my estimation I'm pretty sure the Nystatin was the main factor because the improvements over this period were so steady, and because of the initial improvement to my mental state following the first Herx reaction I had to it.

Shortly after reaching the max level as prescribed by Dr Myhill's plan my issues with the food became all consuming and I had to stop all treatment.

To be clear - before this point I already had really bad issues with food sensitivities and so my diet was very restricted, it was solely chicken and green vegetables, but I also supplemented with vitamins provided by Myhill so I think my diet on balance was probably more healthy than your average person's. But, because I was getting better, I felt it would be good if I could try to expand my diet. This didn't go well; unbeknownst to me I had a Histamine Intolerance and following a very high histamine meal it completely wiped me out, and once I recovered I was now reacting to ALL foods, chicken and veggies included. Since then I've not been able to tolerate ANY medications at all because my reactions to foods already wipe me out too much, medications on top of that can take me from a 1-2 on the Phoenix Rising CFS scale to a flat 0. I haven't been able to take Nystatin again since this point roughly 3 years ago.

As for why I had such a bad food reaction while my CFS had improved so much, I'm not sure. I know now that the food reactions are caused by Mast Cell Activation Syndrome, and my guess is that all that time I spent killing the yeast in my gut was flooding my body with toxins and making my Mast Cells more and more sensitive, eventually causing them to react to foods as well.

Are there any downsides to using Nystatin for such a long time?
I wasn't aware of any, I certainly didn't have any sort of immediate reaction to them and they didn't seem to trigger my MCAS. Any reaction I would get from them seemed to be delayed, which suggested it was a Herx reaction. As Myhill said, they don't get absorbed by the blood stream and so should be fairly safe to consume as theoretically it just passes straight through the gut.

I should note again though that during my period of taking the Nystatin my MCAS clearly became more sensitive, and my guess as to why is because the Nystatin was doing its job effectively and killing microbes. But this is just a guess - my food sensitivities had been getting gradually worse for several years and so this could have just been the natural progression of things, who knows. But actually taking the Nystatin powder itself felt very safe - I react to everything and still didn't react to that.
 

hb8847

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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 would be very interested to see some data on correlations between CFS and regional humidity. Or CFS and prevalence of Water Damaged Buildings. Likewise with Alzheimers.
 

Wishful

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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.
This is part of the reason that I'm not enthusiastic about claims that ME is mould-related. I've lived in quite a few situations were mould was fairly prevalent. When I renovated my bedroom in a previous house, I found a mass of wood in a sponge-like state from earlier water leakage; lots of visible (but dead) fungus present.

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. I can certainly accept some PWME being particularly sensitive to moulds or their toxins, and getting some symptoms aggravated by them, and getting some benefit from treating mould exposure, but I think it's unlikely that many will be cured of ME that way.

I've got some links to the criticisms of the Brewer paper and mycotoxin tests,
I skimmed them, and also can't judge their validity, but they certainly put Brewer's claims in doubt.
 

hb8847

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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.
To me the fact that you have ME and have also lived in a mouldy building would seem like a red flag in itself. Regardless of whether you suffer a worsening of symptoms in mouldier times.

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.

If you do already have an issue with mould/yeast it could just be that the mouldy property just isn't adding to it.

From personal experience, I didn't attribute my issues to mould to begin with as when my CFS first worsened was following a sunny holiday in Italy where there absolutely wasn't any mould. The mouldy/water damaged property I lived in in my early 20s didn't feel at the time like it did anything to my health. Perhaps though it was laying the foundations for a later date. In Brewer's test he specifically noted whether the participants had lived in water damaged buildings at any point in the past, not whether they did currently.

Have you ever been checked for mould issues? Candida in the gut? Mycotoxins in the urine? Have you ever tried antifungals or had a response to them?
 

Hip

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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.
Yes, mold allergy is a mild and separate condition to CIRS / biotoxin illness.



I can certainly accept some PWME being particularly sensitive to moulds or their toxins
According to Shoemaker, 24% of the population have a genetic haplotype that makes them susceptible to developing CIRS after exposure to mold or biotoxins, because some haplotypes cannot properly detoxify biotoxins from their body.

A HLA DR test can determine if you have a susceptible haplotype. Unfortunately 23andme.com genotyping results do not provide this haplotype information, so you have to get a HLA DR test.



Furthermore, not all mold species are of the toxic variety. The nasty stuff is the species Stachybotrys chartarum. So you could have mold growing in your home, but it may not be particularly toxic.
 

hb8847

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Out of interest @Hip , you mention that you stopped the antifungal nasal treatment after experiencing a Herx reaction; why?

My understanding is that a Herx reaction merely indicates that treatment is doing its job, just it's doing it too well; it's killing off so much "bad stuff" it overwhelms your immune system, hence the bad reaction.

Does it not worry you a bit that by changing the medication to something else that didn't give you a Herx, this new stuff wasn't doing anything at all, and hence why it didn't seem to help you recover?