POLL: Have you been tested for Mycotoxins?

Have you been tested for Mycotoxins?

  • No, I have not been tested

    Votes: 12 63.2%
  • Yes, but the test showed low levels of Mycotoxins

    Votes: 1 5.3%
  • Yes, and the test showed high levels of Mycotoxins

    Votes: 6 31.6%
  • I do not have CFS

    Votes: 0 0.0%

  • Total voters
    19

hb8847

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This directly follows on from this thread which discusses the results of Dr Brewer's study, which showed that 93% of CFS sufferers in his clinic had high levels of mycotoxins in their body, compared to 0% for a healthy control group.

I am interested as to whether these results are replicated amongst members of Phoenix Rising. Please only respond to the poll if you suffer from CFS (or, more specifically, you did at the time you had the mycotoxin test).

Here is the initial PR thread from 2013 discussing the study.

Here is the study in question. And the abstract from the study:

Abstract: "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."
Please let me know if there are other options you want me to add to the poll options.

Also, if you tested positive for high mycotoxin levels, please consider sharing (if you are willing) which specific mycotoxins you tested high for and what symptoms of CFS you suffer from. I'm thinking it might be useful in establishing a link between certain mycotoxins and symptoms. If you'd prefer not to please don't feel obligated.

Perhaps if you could also specify which Mycotoxin test you took, namely urine or antibodies. And whether you've taken any other Mould related tests, namely the VCS test. And if you've had a diagnosis of a similar condition such as CIRS.

Also in this thread there is a poll asking whether people have undergone treatments for Mold or Mycotoxins and to what degree they've had any success, please consider responding to that one too.

Thanks,

Hugo
 
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hb8847

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Also, if you tested positive for high mycotoxin levels, please consider sharing (if you are willing) which specific mycotoxins you tested high for and what symptoms of CFS you suffer from.
My mycotoxin test was a Urine test with Biolab UK, and I tested high for the following:

Ochratoxin A - 18.83 (normal range < 7.5)
Mycophenolic Acid - 108.26 (normal range < 37.4)
Citrinin - 66.24 (normal range < 25.0)

All other mycotoxin levels were zero.

I have not had blood mycotoxin tests nor have I had a diagnosis or test for CIRS.

My CFS is severity 1-2 on the Phoenix Rising scale and my main symptoms include:

Fatigue, aching joints
Severe food intolerances
GI issues
Cognitive, balance, vision issues.

I've also been formally diagnosed with Mast Cell Activation Syndrome following testing earlier this year.
 
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I started to use some antifungal drugs sometimes more then one year ago. And I did 1st test after 7 months, mycotoxins was extra high. After I did more intensive treatment, and now my toxins level close to normal (even I still fighting with fungal infections).
 

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hb8847

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I started to use some antifungal drugs sometimes more then one year ago. And I did 1st test after 7 months, mycotoxins was extra high. After I did more intensive treatment, and now my toxins level close to normal (even I still fighting with fungal infections).
Thanks for responding @zaika11

Do you mind me asking, which antifungals did you take and for how long? And how much of an improvement in health did you experience as a result? Was it just the antifungals you were on at the time?
 
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I really can’t say for how long, I used it time to times for whole year( Started from fluconazole (but stoped very soon), and after mostly used intraconazole for a long time. Twice tried voriconazol for 7-10 days about. Once pozaconazol (4 tablets)-too strong can’t tolerate. If you would like to treat - Intraconazol is the best. But all azols become resistant too soon.. 😭
And yes, it was just anti-fungals. But I used some natural staff/supplement like sweating, chlorella, lots green juice like celery, a lot liposome glutathione and vit C
 
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I even can’t say which improving for general condition I had. Bc I have an invasive infections, so it’s a bit different than just a toxins. I am dyeing without treatment. Also I have a long Covid this year. So my toxins cleaning just not possible to understand in general condition. I am so sorry
 

hb8847

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I even can’t say which improving for general condition I had. Bc I have an invasive infections, so it’s a bit different than just a toxins. I am dyeing without treatment. Also I have a long Covid this year. So my toxins cleaning just not possible to understand in general condition. I am so sorry
No problem @zaika11 , thanks for your reply, and please don't be sorry.

Just to clarify, you're saying your general condition hasn't improved as a result of the antifungal treatment? And that you are not just dealing with mycotoxins but also other infections, which is complicating matters?

Thanks
 
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No, antifungals improve me a lot, bc I have fungal infections. I am VERY bad without it. I can’t say how cleaning from mycotoxins improved me. It’s a bit different things
 

hb8847

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I know it's only 3 responses but I'm finding it interesting that so far everyone who's had mycotoxin testing has had high levels.

Please consider responding to the poll if you haven't already, even if you've not been tested for it as that provides some interesting info on the level of testing in the CFS community. The poll results are anonymous, nobody can see your selection, and whether or not you provide any info on your results in the comments is completely up to you.

Alternatively please consider forwarding the link to someone else you know who has been tested. It would be really fascinating if we could get a large scale response to this and establish whether there is any sort of correlation that replicates the Brewer study.
 
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I know it's only 3 responses but I'm finding it interesting that so far everyone who's had mycotoxin testing has had high levels.

Please consider responding to the poll if you haven't already, even if you've not been tested for it as that provides some interesting info on the level of testing in the CFS community. The poll results are anonymous, nobody can see your selection, and whether or not you provide any info on your results in the comments is completely up to you.

Alternatively please consider forwarding the link to someone else you know who has been tested. It would be really fascinating if we could get a large scale response to this and establish whether there is any sort of correlation that replicates the Brewer study.
Yes 1 voice it’s mine. But I got my CFS after getting active viruses, and was gone after very long antiviral treatment. So in my case mycotoxins it’s not a reason for CFS
 

5vforest

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I know it's only 3 responses but I'm finding it interesting that so far everyone who's had mycotoxin testing has had high levels.
I would be happy to participate but I honestly have no way to represent my experience with one of the answers.

I assume the poll is asking about urine tests? I have tested three times, each one with pretty wildly varying results. Two of the tests were from RealTime, one of the tests was from Great Plains.

I have also used ERMI tests. They came out a little suspect, but then we hired a mold inspector (a good one), who did more thorough investigation (air sample, moisture detection in walls, etc.) and confirmed that the house is OK.

I've also lived in, I don't know, countless places since I have been sick. My symptoms have never been better/worse depending on location.

Oh also, FWIW, I did the MARCoNS nasal swab and it came back positive. But my current understanding is that literally everyone has these bacteria in their nasal passages and that it is meaningless. (One of the mold docs, I forget who [maybe Neil Nathan?] agrees with this.)

This is honestly why I am a little jaded :).
 

hb8847

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I assume the poll is asking about urine tests? I have tested three times, each one with pretty wildly varying results. Two of the tests were from RealTime, one of the tests was from Great Plains.
I just meant any sort of test to be honest, urine, blood, antibodies, whatever. I didn't want to slice the options up too much as the main thing was just to get a rough idea on what percentage of people had been tested.

Interesting your results varied, do you mind sharing a bit more about them? Did you test high for any of them, did you undergo treatment, what treatment was it, was there a reduction after treatment? Thanks