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

[PisForPerseverance]

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.

Oh yes true I forgot about mold that's not in the intestines.

But yeah a doctor who looked at my nose and throat the year after a couple years of different toxic mold exposures said she saw mold. She used a magnifying glass but I don't know that it's possible that she could identify that. Diagnosed as fungal and mold. But I did not have a culture.

Yes so can we absorb only mycotoxins? Yes actually I'm remembering that supposedly we can if for example after toxic mold is killed then mycotoxins remain in the air. Killing toxic mold at least in the air produces more mycotoxins (always? That's what I was told). Unless they are taken care of by...? It's been so long since learning about remediation that I don't remember.

There is also mold and mycotoxins in food sometimes.

 

[PisForPerseverance]

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.

It is thought to be not necessarily about the amounts but about how toxic the molds are and how frequent exposure is. Amount of toxic mold surely is one factor though. I remember being told that small amounts of toxic mold repeatedly could be a big issue. Toxic molds are the ones that produce mycotoxins supposedly. Discovery of mycotoxins has been ongoing so whatever is looked for on tests aren't complete.

But ability to detoxify those toxins (and to get rid of mold inside if present I guess) are thought to be large factors in whether mycotoxins are still circulating years after exposure.

 

[hb8847]

From the report:

"The researchers theorized that mitochondrial damage from mold toxicity was causing fatigue in the CFS group. Aflatoxins, ochratoxin A, and trichothecenes all can cause mitochondrial damage. That can lead to reduced energy production."

 

[Strawberry]

Wow. I have dr Kaufman, and he took 20 some odd vials of blood. Not one for mold that I’m aware of…..

 

[hb8847]

And here is a response from the author of the report to someone from this forum, who asked about whether the results were biased in any way:

"Lisa,

Although I am an infectious disease specialist, I had no focus whatsoever on “mold issues.” Prior to February 2012 (when I first heard about the urine mycotoxin assay at RealTime Laboratories) I didn’t even have an interest in mycotoxins or environmental illness. These findings surprised me as much as anyone as the results began to unfold last year.

These patients were all randomly tested. These are long standing patients of mine that were previously diagnosed with CFS / ME (basically “average CFS patients”). We simply discussed the test and offered it to them at routine follow-up clinic visits. Very few suspected mold illness until I brought it up at their routine visits.

We only found that they “lived / worked in buildings with visible mold” after we asked. Some patients didn’t even remember the exposure until we prodded a bit (mainly because the exposure had been so far in the past – such as an apartment they lived in college).

I now see patients every week that are shocked when I bring up mold. They have very impressive exposure histories but no one asked.

If these CFS patients who are on the blogs get tested, I suspect ~ 90% will be positive. A doctor from the East coast has found almost identical results to mine in their cases (90% positive). Same for a physician on the West coast.

Anyone that sends a specimen to RealTime Lab must pay for the test “up front” but many of the patients ended up getting reimbursed (at least for most of the testing cost) from the insurance. They were not biased since most were hoping to get reimbursed.

I think is hard for people to get their “arms around this” and want to implicate selection bias but that simply was not the case.

I hope that helps.

Joe Brewer, MD"

 

[katabasis]

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 actually think this is exactly what is happening in many cases of ME/CFS: some underlying immune dysfunction is permitting various pathogens to persist in the body. Many, many pathogens - viruses, bacteria, and fungi alike - have been in some way correlated with ME/CFS, and I think the most parsimonious explanation does not chalk up multiple infections to coincidence. Mold is extremely common, and I imagine a healthy immune system essentially fends it off. But without that protection, it would really only be a matter of time until a person acquired a mold infection in some form.

I think there's definitely some merit in treating mold if it appears to be present, but the optimal treatment strategy is probably multi-pronged. A lot of the factors in ME/CFS are probably bidirectional. For instance people getting mold infections due to immune dysregulation, but also mold infections (or other infections, or bacterial dysbiosis) causing immune dysregulation. Treating the mold alone may lead to relapse if the immune dysregulation persists, and treating the immune dysregulation may not work if particular infections are not targeted at the same time.

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.

I agree that this is a good insight - it makes me think of the issues of intestinal membrane integrity that appear to occur in IBS. There's a whole world of research if you look into bacterial translocation in the gut. I wonder if aspects of whatever mechanism causes that kind of damage can affect other membranes in the body.

 

[hb8847]

and here is a comment from @lfish:

"I was in to see Brewer. In his original paper it was stated that 104 of 112 patients were positive on mycotoxins. After the paper was published 7 of the 8 negatives retested and all 7 were positives, so now it is over 99%. Dr. Paul Cheney is now testing some of his CFS patients and is getting similar results. Cheney is apparently quite enthusiastic.

Brewer has tried a variety of treatment methods and is now has it down to a fairly precise treatment protocol using atomized antifungals and bioifilm breakers. He is working to develop additional treatment options.
He has had some patients dramatically improve and is now doing some retesting. None have gotten their mycotoxin levels to zero but some are close. There is a direct correlation between mycotoxin level and state of health. He hopes to publish this information eventually.

Brewer emphasized he did not cherry pick the 112 patients. They were long standing CFS patients that were give the option to do the mycotoxin tests. The discovery of a pattern of mold exposure came later. It was a question that hadn't been asked before because it wasn't on the radar.

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."

 

[aquariusgirl]

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).
t.

Sorry this is so wordy, I just wanted to be exactly clear what I'd been through.

So kind of you to take the time adn trouble to explain it. I hope you find solutions.

 

[PisForPerseverance]

some underlying immune dysfunction is permitting various pathogens to persist in the body.

Yeah this is a dominant theory. Many people with ME have multiple infections and reactivations.

the optimal treatment strategy is probably multi-pronged. A lot of the factors in ME/CFS are probably bidirectional. For instance people getting mold infections due to immune dysregulation, but also mold infections (or other infections, or bacterial dysbiosis) causing immune dysregulation. Treating the mold alone may lead to relapse if the immune dysregulation persists, and treating the immune dysregulation may not work if particular infections are not targeted at the same time.

This in all its nuance is the approach of some doctors. There's a lot of nuance and a lot of individual uniqueness and a lot of ongoing theory/discovery.

Yeah a lot of factors in ME seem to be bidirectional. A lot of the associated conditions people with ME have (recently coined the "pentad" and "septad") are related and affect each other. Infections being one. Some of the conditions in the septad can be seen related without ME too. Like the "triad" of dysautonomia, mcas, and eds. We do happen to be inside of an entity that there's so much biological and medical discovery happening in. Mostly informal theorizing based on evidence and clinical, compared to the relatively small amount of official research. I've been amazed by so many things that bent my views of our bodies, emotions, thoughts, medicine, pathogens, but also wish I wasn't a science project.

 

[PisForPerseverance]

and here is a comment from @lfish:

"I was in to see Brewer. In his original paper it was stated that 104 of 112 patients were positive on mycotoxins. After the paper was published 7 of the 8 negatives retested and all 7 were positives, so now it is over 99%. Dr. Paul Cheney is now testing some of his CFS patients and is getting similar results. Cheney is apparently quite enthusiastic.

Brewer has tried a variety of treatment methods and is now has it down to a fairly precise treatment protocol using atomized antifungals and bioifilm breakers. He is working to develop additional treatment options.
He has had some patients dramatically improve and is now doing some retesting. None have gotten their mycotoxin levels to zero but some are close. There is a direct correlation between mycotoxin level and state of health. He hopes to publish this information eventually.

Brewer emphasized he did not cherry pick the 112 patients. They were long standing CFS patients that were give the option to do the mycotoxin tests. The discovery of a pattern of mold exposure came later. It was a question that hadn't been asked before because it wasn't on the radar.

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."

Thanks for figuring this out. I want to see a study comparing those with ME with suspected or known exposure to toxic mold, to healthy people with same. Yeah that is significant though.

When I next talk about treating toxic mold with one of my current doctors, I'll ask about the theories of why some people continue to have mycotoxins over ones who don't, and what the mechanisms are for how they self perpetuate (whether always through mold inside or not). He's involved with a group of doctors who theorize regularly about it (like dr nathan and dr brewer) so I know he'll have the most up to date theories and debated theories.

It's taken a back seat but I will see at some point if I still have levels in my urine.

 

[hb8847]

I actually think this is exactly what is happening in many cases of ME/CFS: some underlying immune dysfunction is permitting various pathogens to persist in the body. Many, many pathogens - viruses, bacteria, and fungi alike - have been in some way correlated with ME/CFS, and I think the most parsimonious explanation does not chalk up multiple infections to coincidence. Mold is extremely common, and I imagine a healthy immune system essentially fends it off. But without that protection, it would really only be a matter of time until a person acquired a mold infection in some form.

I think there's definitely some merit in treating mold if it appears to be present, but the optimal treatment strategy is probably multi-pronged. A lot of the factors in ME/CFS are probably bidirectional. For instance people getting mold infections due to immune dysregulation, but also mold infections (or other infections, or bacterial dysbiosis) causing immune dysregulation. Treating the mold alone may lead to relapse if the immune dysregulation persists, and treating the immune dysregulation may not work if particular infections are not targeted at the same time.

This is a good point and something that could well be the case. Perhaps it all starts out by a disruption to the microbiome (caused by overuse of antibiotics, an infection, a poor diet, anything) which then weakens your immune system, making you more susceptible to moulds taking hold.

But that doesn't mean the mould isn't be the root cause of the symptoms. It might mean that recovery entails both removal of the source of mycotoxins and, say, restoration of the gut microbiome to prevent relapse, but both stages are surely equally important.

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.

At the very least it's incredibly likely that having high levels of mycotoxins doesn't help your health - here's the author's experience of treating his patients:

"He has had some patients dramatically improve and is now doing some retesting. None have gotten their mycotoxin levels to zero but some are close. There is a direct correlation between mycotoxin level and state of health."

 

[5vforest]

RealTime Labs is junk, it comes back positive for everyone.

The other urine Mycotoxin Tests are not much better.

Remember, these tests are not calibrated in a transparent manner, we have no idea what the reference ranges really mean.

There are all sorts of harmless Mycotoxins that are present on food, and when you eat them, you will test positive for a bit after.

I actually do think that mold exposure is one of the underlying issues driving complex illness, I just think that the science from Brewer, Nathan, Shoemaker, etc. is pretty crappy.

 

[hb8847]

RealTime Labs is junk, it comes back positive for everyone.

The other urine Mycotoxin Tests are not much better.

Based on..?

Weird how none of those healthy controls had high levels of mycotoxins given all the tests supposedly come back positive...

There are all sorts of harmless Mycotoxins that are present on food, and when you eat them, you will test positive for a bit after.

Again, isn't it so fortunate it was only the healthy controls that didn't eat any mould containing food!

I just think that the science from Brewer, Nathan, Shoemaker, etc. is pretty crappy.

Based on...? Do you have a science or medical background? Any expertise with which you can make that judgement?


With respect, I have no problem if you're going to critique the experiments with some actual substance as to why, but just to fling out statements like "RealTime is junk" and "their science is crappy" is so worthless, back it up with something genuine please or there's no reason for people to take it seriously.

 

[godlovesatrier]

I just remembered 2 years ago in an office I was working in the lady who ran it had to get a load of boxes unloaded from a water logged cellar. Not only did she ask staff to do this which I thought was a real f'ing joke. But she also put the boxes into my then office.

So heres how that went down. We go down there. It stinks to high heaven of mold. We get these boxes many of which are covered in dust and god knows what. Not to mention have black mold ON them. She then dumps these boxes into the office upstairs that we worked in. After a few days of the sheer stench of mold I refused to work there anymore and moved to a different office. It must have been a year later before she moved them.

I feel like suing the company simply to expose the fact that they didn't help her move it all and get it out in storage.

Funnily enough I found an igg and igm Toxoplasma test the other day on medichecks.com. it's on my list of tests to get. Although I also read in another thread that's several years old that lots of healthy patients also have mold. So I'm not sure if these controls are entirely representative?

Even so makes me shudder thinking about the incident with the boxes! Not long after that I started working entirely from home. Company was absolutely shit. No exaggeration.

 

[Hip]

Dr Brewer prescribes an antifungal nasal spray to treat what he believes are mold infections in the nasal cavity of ME/CFS patients, which he thinks might be the source of mycotoxins in the body. My experiments with a home made version of this spray are detailed here. But I have not come across any success stories with this nasal spray.

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.

Major chronic stress has also been linked to ME/CFS, probably for the same reason: this sort of stress weakens antiviral immunity, so during the acute viral infection, may allow the virus to run riot in the body.

 

[godlovesatrier]

Does anyone know what sort of inhalants and biofilm breakers he's using?

I wonder how potent andrographis paniculata is against mold. It's an anti bacterial and anti fungal. I always did really well on it. I would be surprised if it didn't have an effect but maybe not on sinus tissue. Lifting all deposits and killing the pathogen is always tricky with stuff like this.

 

[godlovesatrier]

Also makes me wonder if a standard immune can clear it. If that standard immune response were "made healthy" would it clear the infection then on its own.

 

[5vforest]

Based on..?

Weird how none of those healthy controls had high levels of mycotoxins given all the tests supposedly come back positive...




Again, isn't it so fortunate it was only the healthy controls that didn't eat any mould containing food!





Based on...? Do you have a science or medical background? Any expertise with which you can make that judgement?


With respect, I have no problem if you're going to critique the experiments with some actual substance as to why, but just to fling out statements like "RealTime is junk" and "their science is crappy" is so worthless, back it up with something genuine please or there's no reason for people to take it seriously.

I’ll be happy too find some resources in the morning and will post them. None of this is very new, all of this has been discussed and debated amongst pwME for years.

Brewer and Shoemaker had some sort of falling out. Even they cannot agree on the science.

If you really want a skeptic’s view / red pill, look at Science Based Medicine, I think it is. Dennis hooper I believe is the founder of Real-time. It’s pretty ugly.

Sorry, on my phone right now so can’t link all these.

 

[Martin aka paused||M.E.]

I lived with black mold for over 8 years... ordered the test from the UK

 

[Boba]

Which test are you getting? Thank you