Detection of Mycotoxins in Patients with CFS

[used_to_race]

I had a positive on the GPL-Mycotox for Ochratoxin A. Had most of these parameters tested, including VEGF, TGF Beta, C4a. TGF Beta was at first a little high (like 6000) but retested within the normal range twice now. I also had my apartment tested professionally and the spore counts were pretty low. I haven't taken anything for mold except liposomal glutathione, which I took for several reasons. Don't believe that mold illness is what's causing my symptoms.

 

[stetson28]

How about immune deficiency panel, how many folks have taking that and received results?

Igg total
Igg 1
Igg 2
Igg 3
Igg 4

IGM
IGE
IGA

And the follow-up question how many folks were able to modulate those findings either up or down?

 

[used_to_race]

How about immune deficiency panel, how many folks have taking that and received results?

I had all these tested as well and they were in the normal ranges.

I think it's worth mentioning that TGF Beta was named in the cytokine paper by Montoya et al as one of only 2 cytokines (out of 63 tested) that was routinely outside normal ranges in CFS/ME patients. This kind of implies that high TGF beta is a property of many inflammatory conditions rather than mold illness itself. I would generally say the same thing about complements like C4a, but in autoimmune disease they are routinely lower (I think).

My general interpretation of this stuff is that the trigger is often less relevant than people think. I'd love to be corrected here but where is the proof that mold can stick around for years in a person's system without ongoing exposure? And where is the proof that people with so-called mold illness have different levels of exposure to healthy controls? Whether the trigger is mold, lyme, some virus, or any other factor, it seems as though the outcome is the same. And I feel like in the absence of some "antibody" or other biomarker for ME/CFS, people choose to go after the trigger when it's no longer an issue. Not saying this is always the case but it seems to be the unfortunate truth for most of us.

 

[stetson28]

I agree with your opinion on TGF beta as well as c4a.
As far as the recurrent mold goes without exposure. I would recommend reading about lymerex which was a Lyme vaccine from roughly 20 years ago specifically read about why it failed. The gist is the cell signaling and and the pathways used 4 spirochete surface protein rotational shedding are that what is also used for some specific mold mycotoxins. Simply put it's why some people can't handle mold after a tick bite.
This of course is a side from all the different genetic profiles making you more susceptible to methylation problems detox excetera.

I have to say though that's pretty extraordinary from my experience to be a normal range on the Schumacher mold panel as well as all the antibody classes if you have common highly impactful mold toxicity symptoms. Many of us on this particular chat are 10 times the normal range so not exactly subtle.

 

[used_to_race]

I would recommend reading about lymerex which was a Lyme vaccine from roughly 20 years ago specifically read about why it failed. The gist is the cell signaling and and the pathways used 4 spirochete surface protein rotational shedding are that what is also used for some specific mold mycotoxins. Simply put it's why some people can't handle mold after a tick bite.

I can't really understand what you're saying here. Mind providing a source? I've definitely heard about people developing a meat allergy after a tick bite, so there could be something going on with molecular mimicry, but I've never looked much into it. I tested negative for everything on the Igenex panel.

This of course is a side from all the different genetic profiles making you more susceptible to methylation problems detox excetera.

Again, have there been any large studies done that indicate any correlation between certain HLA-DR haplotypes and propensity to develop certain illnesses? Is there any research that substantiates the link between genotype and "detox" in a robust fashion? I'm genuinely asking, albeit pretty skeptical.

I have to say though that's pretty extraordinary from my experience to be a normal range on the Schumacher mold panel as well as all the antibody classes if you have common highly impactful mold toxicity symptoms. Many of us on this particular chat are 10 times the normal range so not exactly subtle.

Are you referring to my lab values here? Assuming you are, I kind of agree. Rarely have I seen someone without any elevated markers if they actually choose to do the testing. Which is another reason why I think these tests aren't all that useful. I don't mean to sound totally dismissive - there are definitely enough stories out there for me to think mold illness is a real thing. I just don't think it's as easy to test for as looking at TGFbeta, C4a, and VEGF. Nobody has ever done a rigorous study to find a robust set of biomarkers; it all just seems to be based on Shoemaker's experience. To be fair, it would make sense that I don't have any lab markers that are way off - my illness is pretty mild compared to most on here.

 

[Joopiter76]

Can anyone please provide me a link where or how I can do the tests for those mycotoxins from europe? Thank you so much !!

 

[used_to_race]

Can anyone please provide me a link where or how I can do the tests for those mycotoxins from europe? Thank you so much !!

The GPL-Mycotox test is just a urine test so you should be able to send your frozen sample using express shipping on a Monday or Tuesday and I would imagine it will be fine. You can also call the lab to check, they definitely answer their phones and can advise you on this. I would imagine they will be glad for you to pay for a test.

 

[Joopiter76]

OK. can you please link to their website!? Many thanks.

 

[stetson28]

GPL mycotoxins is offered by many different providers so really you can just shop by price or go through your physician for a possible bulk rate. The poor man's route is just going to try a bunch of different binders and see if you feel Improvement temporarily.

https://labtestsplus.com/product/gpl-tox-toxic-organic-chemical-profile/

 

[taa2]

Hello foxy loxy,

I have had several years of improvement with nasal antifungals, as have the vast majority of Brewer patients. Oral antifungals have not been very effective, although I do believe it has helped some patients.

Gliotoxin is a type of toxin produced by mold and maybe yeast. Aspergillus produces gliotoxin. There may be others.

I am about to start Nystatin atomized into my sinuses, but in a recent lecture I saw online Brewer saying Nystatin is not effective against the higher molds, but only yeasts. I don't know if he made a mistake? As he did a whole study showing that it helped people who were positive for mycotoxins. What nasal antifungal are you taking?
Thanks

 

[junkcrap50]

I am about to start Nystatin atomized into my sinuses, but in a recent lecture I saw online Brewer saying Nystatin is not effective against the higher molds, but only yeasts. I don't know if he made a mistake? As he did a whole study showing that it helped people who were positive for mycotoxins. What nasal antifungal are you taking?
Thanks

How old was the onilne video or lecture? What was the date it was given? Because unless he's changed something recently, he still prescribes Nystatin to be atomized into sinuses as of less than a year ago. It's more tolerable for patients and more widely available than intranasal itraconazole or amphotericin. Was he talking about oral nystasin?

 

[taa2]

How old was the onilne video or lecture? What was the date it was given? Because unless he's changed something recently, he still prescribes Nystatin to be atomized into sinuses as of less than a year ago. It's more tolerable for patients and more widely available than intranasal itraconazole or amphotericin. Was he talking about oral nystasin?

It was from 2016. That's interesting that he is still prescribing intranasal Nystatin less than a year ago. Maybe he made a mistake in the talk? Or perhaps he was only talking about it killing only yeast if it is swallowed? He just said Nystatin in the video. Here is the link.. it is from the 54:05 to 54:20 mark

 

[taa2]

Has anyone been doing this treatment using a netipot? (attached pic) I find when using this, it actually gets deeper in my sinuses compared to the nasal atomizer. But my question is, is it safe to use the nystatin with a netipot?

 

[junkcrap50]

Has anyone been doing this treatment using a netipot? (attached pic) I find when using this, it actually gets deeper in my sinuses compared to the nasal atomizer. But my question is, is it safe to use the nystatin with a netipot?

Sure. It's safe. I don't see how it couldn't be. I would think using nystatin in the netipot would be too wasteful. It's only touching your mucous membranes for a second or two and then rinsing out. I made my own "anti-mold", "anti-biofilm" solution and used in a Neil-Rinse bottle, essentially a netipot. But didn't think it did much. I never got results using the Brewer Protocol for mold, even using the atomizer.

When using the atomizer, I wanted to make sure it got all the way up my nose and did not want to waste anything that dripped or ran out. So I used this technique I found online, called the "Flip-and-Turn Sinus Flush," https://www.medhelp.org/user_journals/show/2322/The-Sinus-Flush . Maybe it'll be helpful to you.

 

[Dakota15]

@taa2, if you don't mind me asking, are you a patient of Dr. Brewer's? Or was it another physician who prescribed the Nystatin?

I've been curious to try Nystatin based on my storyline but I have not tried yet.

 

[taa2]

@taa2, if you don't mind me asking, are you a patient of Dr. Brewer's? Or was it another physician who prescribed the Nystatin?

I've been curious to try Nystatin based on my storyline but I have not tried yet.

Hey,
I got it from a doctor here in the UK, not a patient of Brewer

 

[taa2]

Sure. It's safe. I don't see how it couldn't be. I would think using nystatin in the netipot would be too wasteful. It's only touching your mucous membranes for a second or two and then rinsing out. I made my own "anti-mold", "anti-biofilm" solution and used in a Neil-Rinse bottle, essentially a netipot. But didn't think it did much. I never got results using the Brewer Protocol for mold, even using the atomizer.

When using the atomizer, I wanted to make sure it got all the way up my nose and did not want to waste anything that dripped or ran out. So I used this technique I found online, called the "Flip-and-Turn Sinus Flush," https://www.medhelp.org/user_journals/show/2322/The-Sinus-Flush . Maybe it'll be helpful to you.

Hey, Thanks a lot for your advise, I'll def try that technique out. I'm sorry you didn't get results from the protocol

 

[Dakota15]

@taa2 Did your CFS/ME start from sinus issues, just curious?

 

[taa2]

@taa2 Did your CFS/ME start from sinus issues, just curious?

In short, no. More started with a group of symptoms of milder on/off fatigue, heart palpitations, dizziness, anxiety (typical POTS symptoms), sinus congestion then followed. with repeated flu like symptoms and increased fatigue and eventually PEM. I did keep getting bad sinus congestion before my CFS/ME turned severe though

 

[hunter1899]

Anyone else here have pressure in the forehead and eyes/eyelids. It's my worst symptom. (I tested positive for Ochra, Aflatoxin, and Glio.) On binders and cholest.