Help me make sense of my GPL-MycoTOX results!

[used_to_race]

A few weeks ago, I sent in a sample to GPL for their mycotoxin panel. My results came back the other day, and they are as follows (all units in ng/g creatinine):

Metabolite ------- Result ------- Common Range of Positive Results
Aflatoxin M1 (AFM1) ------- 0 ------- 1.3-3
Ochratoxin A (OTA) ------- 48.4 ------- 1.2-5
Sterigmatocystin (STG) ------- 0 ------- 0.1-2.25
Roridin E ------- 0 ------- 0.5-2
Verrucarin A ------- 0 ------- 0.75-2.25
Enniatin B1 ------- 0 ------- 0.5-1.2
Zearalenone (ZEA) ------- 0 ------- 0.09-0.45

So as far as I can tell, this is just a measure of the excretion of any of these toxins/metabolites at the moment the sample was collected. These have an apparently long half-life in the body, so the instantaneous excretion is probably a good indicator of exposure over the month or so preceding the sample collection. Is this a fair summary?

If that's the case, I see no reason why any particular value is necessarily of clinical significance, despite GPL saying that all positive values are clinically significant. As far as I know, the problem with mold exposure (and CIRS) is not the excretion of the toxin, but rather the lack of one's ability to excrete the toxin. Is this correct? If so, then excretion could be a good thing (albeit suggestive of continued exposure, which is a bad thing), right?

If this test is proof of exposure, which testing can I do to see if this exposure is problematic in my case? I have had labs drawn for:

• ADH (Antidiuretic Hormone) - apparently low in cases of mold toxicity. I myself urinate very frequently.

• HLA-DR by PCR - genetic testing that predicts inability to process certain mycotoxins.

• MSH (Melanocyte Stimulating Hormone) - apparently low in cases of mold toxicity. Can affect immune function.

• VIP (Vasoactive Intestinal Peptide) - another hormone that is commonly low in cases of mold toxicity.

• TGF-beta 1 - cytokine that is often elevated in cases of mold toxicity.

• Serum Osmolality - apparently low in cases of mold toxicity.

• VEGF - I think this is a cytokine (?) or some other protein that is apparently high in cases of mold toxicity.

• Prothrombin/Antithrombin

I'll follow up with the results here in this thread, and hopefully someone will discuss these with me. Are there any others I should do? I know that C3a and C4a are commonly looked at in CIRS. I had this test done by my rheumatologist a month or two ago. Are the C3 and C4 complements in this panel the same thing as C3a and C4a? My values were at the low end of the normal range for each.

Additionally, I have taken a VCS test online and scored 100%.

Depending on the results of these other tests, I will probably get an ERMI kit and have my living room tested, or maybe even several rooms in my apartment. There's no obvious mold problem in my apartment or office, so maybe the source of the ochratoxin A is from food. But because the amount excreted is so high, I can't imagine that all this OTA would be coming from food...

I can talk about my symptoms if anyone is interested, but basically I have mild CFS-like symptoms for 2-3 years now, sudden viral onset with a couple periods of brief remission towards the beginning. Constant sore throat, mild runny nose, lymphadenopathy, periodic mild POTS/palpitations, frequent urination, cold intolerance. Very limited, even nonexistent cognitive dysfunction. No pain or light/sound sensitivity. Anyone have any thoughts?

 

[fromstrawtomore]

- Serum osmolality is often high while ADH is often low
- C3 and C4 aren't the same as C3a and C4a, and are often low as opposed to high for the latter.

That's a pretty good panel you've got there.

The GPL-Mycotox test is a bit of unknown at this point.

 

[used_to_race]

Figured I'd post a little update for ya'll, but this isn't quite over yet.

My HLA-DR haplotype is one of the multisusceptible haplotypes. But I couldn't really find anything in the literature that shows this to be a robust finding. Maybe I'm missing something big but it looks like conjecture from Shoemaker, and furthermore I've seen that up to 40% of North Americans exhibit this haplotype.

TGF-beta 1 was 6380 pg/mL which is at the high end of Labcorp's normal range. My new ME/CFS specialist ran this again through Quest, so we will see how it looks on repeat testing. However, this cytokine was also found to be present in ME/CFS by Montoya et al in the famous cytokine paper. She also ran the C4a from National Jewish and the one from Quest, so that should be instructive. My ADH was undetectable, but again, I've heard this is pretty common in CFS/POTS/Dysautonomia, so it doesn't mean I have mold illness. My MSH was normal, even for Shoemaker's range. I've actually heard that higher MSH is more a feature of CFS and I am very pale/reddish haired so it could just be related to those elements. VIP and VEGF were also normal. PTT/aPTT and all that were normal. Osmolality was normal. So basically I am waiting on the C4a to make any conclusions on the blood work, but I don't think mold is my problem.

I spoke on the phone with a person from GPL who told me that I almost certainly have an ongoing exposure due to the level of Ochratoxin A, but that it is possible that it was a past exposure. She was adamant that there was no chance of this being a lab error. Based on this information, I was about to buy an ERMI kit to test my apartment, but then I found a person locally who does inspections and runs a few tests. She made a really good impression on me, and has a PhD in cell biology. She came and inspected the apartment thoroughly and said she doesn't think there's an issue. When the labs came back, this was confirmed: there is no mold problem in my apartment, the spore counts are just too low for it to be a problem. I also strongly doubt that my office has a mold problem, or else other people would be having symptoms, but I guess it's not impossible.

Overall, I think that mold illness is a very real thing, but I do not believe the claims about it being widespread to be robust. My current guess is that the GPL result was a lab error, but who knows? I was probably exposed to mold 4-6 years ago in college in Florida. It seems to me like the kind of thing that's nearly impossible to rule out, so I may try cholestyramine or charcoal at some point but it's not a priority to me right now.

 

[Learner1]

My Ochratoxin A level was 5.8 on the same test, far lower than your value, and both my ME/CFS specialist and functional medicine doctor were concerned as it could be impacting my immune system.

I did an ERMI on 2 areas in my house, and one, not my master bathroom which is where I'd thought it might be, was clean. The other had a high level of one Ochratoxin A producing species. Next step, figure out what to do to get rid of it.

Perhaps it's in your car or where you work if not your house?

Great Plains recommended doing a companion OAT test at the same time, which had a plethora of abnormal values, including depleted glutathione and vitamin C.

Rather than binders, which could bind my supplements, my doctor is having me up my vitamin C and glutathione doses, and take them multiple times a day.

 

[used_to_race]

My Ochratoxin A level was 5.8 on the same test, far lower than your value, and both my ME/CFS specialist and functional medicine doctor were concerned as it could be impacting my immune system.

I think I mentioned this to you but weirdly, my naturopath, who is a former student of your naturopath's, was unconcerned with the Ochratoxin A in my case. He also said it was a detox issue rather than a root cause, and I'm not sure who to believe. If it was a lab error that would explain a lot, but maybe that's too easy of a conclusion to draw.

I did an ERMI on 2 areas in my house, and one, not my master bathroom which is where I'd thought it might be, was clean. The other had a high level of one Ochratoxin A producing species. Next step, figure out what to do to get rid of it.

The inspector I hired collected samples in my bedroom and living room after agitating the walls and floors to create a "worst case" set of dust conditions. She also evaluated walls and floors for latent moisture and found none. I am pretty confident that the results I got from her are correct. But I certainly do not envy your position; it's a real dilemma. I guess you have to trust your gut and your own healthcare providers (especially because of their track record in helping you and other patients).

Great Plains recommended doing a companion OAT test at the same time, which had a plethora of abnormal values, including depleted glutathione and vitamin C.

I think you saw my Genova Nutreval which was collected around the same time, and although it had useful information, it likely did not paint as stark a picture as you saw in your own case.

Rather than binders, which could bind my supplements, my doctor is having me up my vitamin C and glutathione doses, and take them multiple times a day.

Hopefully that works, and you can get to the bottom of this stuff

 

[Learner1]

Its a detox issue if you have toxic stuff building up faster than you can get rid of.

What I found was not huge, but my doctors feel it's part of what's keeping me sick and worth dealing with. It's the total load on the body.

 

[Lieselotte]

This is an old thread, but since I have a similar question, I thought I would just keep everything organized and in the same place...

I just had a GPL MycoTox test done. All metabolites were Zero except:

Ochratoxin A: Result=5.03 Common range of positive results 4-20
Citrinin: Result=53.67 Common range of positive results 10-50

My doctor just said to take charcoal and get my house checked. And do saunas.

My questions are: Is there any other test I should take to tell if this is actually affecting me?
Is it possible that the results are bad but not affecting me? Or just a detox issue?

I have lived in 4 different apartments in the last 4 years and 3 different work spaces. I am conflicted on getting testing done in my home and work as I don't have a lot of extra $$ right now. But, does anyone have recommendations on testing that is good and/or won't break the bank? This disease is a money pit.

This is causing me more stress which I know is not good for improvement!

 

[used_to_race]

The classic response to all your moves not changing anything is that the toxins are embedded in your clothes and other possessions, so if you took those then you're screwed anyway. I'm not sure how true that is but if you truly had a mold issue then you probably at least want some new clothes and a new mattress.

My doctor just said to take charcoal and get my house checked. And do saunas.

I notice you actually live within an hour or so of me. I found a reputable person that checked my place for mold (PhD microbiology UCLA, does this for a living) so let me know if you want their contact info. I think she charged me like $300, and if you tell her you're broke then maybe she'll cut you a deal - she was super nice and compassionate. I don't know if this kind of testing can find traces of toxins in your possessions from a previous mold issue, she would probably know and I'm sure she'd talk to you on the phone for free.

I think generally if you have your house and car checked and you find mold, it's probably a good idea to move or whatever. Even if it turns out that's not causing your ME/CFS, I think that long term exposure is bad no matter what, and even a healthy person would be sensible to move in that situation. If you don't find anything, then you don't need to worry.

I don't think you can really trust the GPL MycoTox test. Maybe it's correct, but like you said, it can be a super expensive thing to act on, and the follow-up is super expensive. More research is coming and I think we will know more in 2-3 years.

 

[Lieselotte]

@used_to_race Thanks for the info, I appreciate it.
Can you PM me the contact info for the PhD? Did she do ERMI testing or something else?

 

[zaika11]

The classic response to all your moves not changing anything is that the toxins are embedded in your clothes and other possessions, so if you took those then you're screwed anyway. I'm not sure how true that is but if you truly had a mold issue then you probably at least want some new clothes and a new mattress.



I notice you actually live within an hour or so of me. I found a reputable person that checked my place for mold (PhD microbiology UCLA, does this for a living) so let me know if you want their contact info. I think she charged me like $300, and if you tell her you're broke then maybe she'll cut you a deal - she was super nice and compassionate. I don't know if this kind of testing can find traces of toxins in your possessions from a previous mold issue, she would probably know and I'm sure she'd talk to you on the phone for free.

I think generally if you have your house and car checked and you find mold, it's probably a good idea to move or whatever. Even if it turns out that's not causing your ME/CFS, I think that long term exposure is bad no matter what, and even a healthy person would be sensible to move in that situation. If you don't find anything, then you don't need to worry.

I don't think you can really trust the GPL MycoTox test. Maybe it's correct, but like you said, it can be a super expensive thing to act on, and the follow-up is super expensive. More research is coming and I think we will know more in 2-3 years.

Could you to share a contact that doctor please?

 

[vision blue]

While there's no particular reason to suspect lab error, I'd vote for the possibility that the correction for creatinine levels may have artifactually inflated your results.

The mycotoxin test is a one-time urine sample so they use the amount of creatinine in the urine to estimate how dilute it is, which i turn greatly affects the final amount of toxins estimated. In fact, Great Plains lab boasts in their description of the test that the results can differ by 35 fold (!) depending on correction for creatinine. But the problem is that other things affect creatinine besides how much water you drank (dilution). The more muslces you have, the higher the creatinine level. So anyone with low muscle mass, be in from being a small woman, to weak muscles of any cause (deconditioning, atrophy), will have lower creatinine that then is assumed to be from a diluted sample - except that's an error! The end result is that the numbers show up as higher than they really are. Note that if you also have a kidney issue or your urine otherwise has low creatiine having nothing to do with how much water you drank (like some of us), there too, the low creatinine is blamed on water consumption and the results are overestimated. Very large men or those who have greater than average muscles will have the oppoiste problem- the numbers will show up as lower than they really are. Given that they can vary by 35 fold for different amounts of creatitine, they are potentially way way overestimated.

If the test is 24 hour urine, then there's no problem becasue they just measure how much is present int he urine- no calculation based on creatinine is done. But they don't. Also, some labs calculate body surface area and used that in the calculation for one time urine samples, but GPL does not do hat. Another way to get around the issue is to look at ratios rather than absolute amounts works for things like if youre measureing say magnesiusm and potassium, or different amino acids - you can take a ratio. But a ratio is useless in the mycotoxin test.

GPL is expanding their testing of mold related issues. My cynical guess is that they are following the money. Mold/mycotoxin testing is a big money maker for both functional medicine doctors and alternative lab testing companies. So many people, healthy or not, have mold show up. So it's something visible that the practioners can say AHA! - and show the patient the out of range number, which looks impressive. The leads to more testing, and treatments, and retesting - the $$ add up for all involved. Becasue the numbers are often wildly elevated (again, think back to the 35 fold difference based on corrections. as well as high sensitivity of the test) - this gets attention of patient - oh wow- looks more impressive than a borderline high lab result one never knows what to do with it. While some chronically ill do have an issue with mold, i don't think you can tell from these tests who does despite the high numbers.

sorry that got preachy- just trying to get a point across and the words aren't flowing properly.

One test that may be helpful is a test that's second most on my list of alternative tests that have been of value. its the comphrensive stool analysis. Although it's not PCR (so not senstitive to the max), they both culture for fungus and look microscopically. If you ask the folks/counsselors/nurses at great plains lab (using the 30 minute free consult you get for doing a test ) why there was 0 mold growth on the stool analysis and 0 evidence on microscopy, they say the OAT (in this case I asked about OAT) is much more sensitive and will show up before the stool analysis. But too much more sensitive perhaps? does that predict that eventually will show up in stool analysis? If it were really bad, wouldn't it colonize gut? (don't know, perhaps just in respitory system)? .

one other quick thing about this thread. someone mentioned Vit. C level on the OAT and that their result was zero or near zero indicating defiiency. Actually, even the great plains folks in their webinars (free for all) say that it's commonly zero or near zero and does not mean a deficiency; its just that vit c is metabolized very quickly or some such and in no way indicates a deficiency.

 

[zaika11]

While there's no particular reason to suspect lab error, I'd vote for the possibility that the correction for creatinine levels may have artifactually inflated your results.

The mycotoxin test is a one-time urine sample so they use the amount of creatinine in the urine to estimate how dilute it is, which i turn greatly affects the final amount of toxins estimated. In fact, Great Plains lab boasts in their description of the test that the results can differ by 35 fold (!) depending on correction for creatinine. But the problem is that other things affect creatinine besides how much water you drank (dilution). The more muslces you have, the higher the creatinine level. So anyone with low muscle mass, be in from being a small woman, to weak muscles of any cause (deconditioning, atrophy), will have lower creatinine that then is assumed to be from a diluted sample - except that's an error! The end result is that the numbers show up as higher than they really are. Note that if you also have a kidney issue or your urine otherwise has low creatiine having nothing to do with how much water you drank (like some of us), there too, the low creatinine is blamed on water consumption and the results are overestimated. Very large men or those who have greater than average muscles will have the oppoiste problem- the numbers will show up as lower than they really are. Given that they can vary by 35 fold for different amounts of creatitine, they are potentially way way overestimated.

If the test is 24 hour urine, then there's no problem becasue they just measure how much is present int he urine- no calculation based on creatinine is done. But they don't. Also, some labs calculate body surface area and used that in the calculation for one time urine samples, but GPL does not do hat. Another way to get around the issue is to look at ratios rather than absolute amounts works for things like if youre measureing say magnesiusm and potassium, or different amino acids - you can take a ratio. But a ratio is useless in the mycotoxin test.

GPL is expanding their testing of mold related issues. My cynical guess is that they are following the money. Mold/mycotoxin testing is a big money maker for both functional medicine doctors and alternative lab testing companies. So many people, healthy or not, have mold show up. So it's something visible that the practioners can say AHA! - and show the patient the out of range number, which looks impressive. The leads to more testing, and treatments, and retesting - the $$ add up for all involved. Becasue the numbers are often wildly elevated (again, think back to the 35 fold difference based on corrections. as well as high sensitivity of the test) - this gets attention of patient - oh wow- looks more impressive than a borderline high lab result one never knows what to do with it. While some chronically ill do have an issue with mold, i don't think you can tell from these tests who does despite the high numbers.

sorry that got preachy- just trying to get a point across and the words aren't flowing properly.

One test that may be helpful is a test that's second most on my list of alternative tests that have been of value. its the comphrensive stool analysis. Although it's not PCR (so not senstitive to the max), they both culture for fungus and look microscopically. If you ask the folks/counsselors/nurses at great plains lab (using the 30 minute free consult you get for doing a test ) why there was 0 mold growth on the stool analysis and 0 evidence on microscopy, they say the OAT (in this case I asked about OAT) is much more sensitive and will show up before the stool analysis. But too much more sensitive perhaps? does that predict that eventually will show up in stool analysis? If it were really bad, wouldn't it colonize gut? (don't know, perhaps just in respitory system)? .

one other quick thing about this thread. someone mentioned Vit. C level on the OAT and that their result was zero or near zero indicating defiiency. Actually, even the great plains folks in their webinars (free for all) say that it's commonly zero or near zero and does not mean a deficiency; its just that vit c is metabolized very quickly or some such and in no way indicates a deficiency.

Hi, just feel to correct a bit, if you not mind
After 3 months of antibiotics treatment I got a fungal
sphenoiditis, as well fungal growing in orher locations - eyes, eyelid, digest system(pcr test, culture). So I started antifungal medicine. My mycotoxins test was EXTREMELY high, a doctor said he saw like this just twice. And I had positive high level Fungitell test(beta glucan) which means I have a fungal invasive infection. I did a few months antifungal treatment, and next mycotox test was almost normal, as well fungitell test

Only a problem, while I do a treatment - level is good, as only I do a break- and infection and fungitell level grows again😭. But it because I have a primary immune deficiency and my microbiome damaged with lots antibiotics in past..
So this is a story - Mycotoxins test it’s not just bussines, it’s helpful in diagnostic and pretty accurate

 

[vision blue]

@zaika11 Interesting case but note how different yours is than the original poster. Your levels in mycotoxin test higher than most ever seen- at that level it likely id meaningful but not clear at lower levels. Yours so high that creatine correction likely to be only a small factor. Of course at your severity, maybe doesnt add much to what you already knew- or did it help you figure out what the species were?

 

[zaika11]

@zaika11 Interesting case but note how different yours is than the original poster. Your levels in mycotoxin test higher than most ever seen- at that level it likely id meaningful but not clear at lower levels. Yours so high that creatine correction likely to be only a small factor. Of course at your severity, maybe doesnt add much to what you already knew- or did it help you figure out what the species were?

It was a different types, albicans, penicillin, aspergillosis, clodosporiume. Who is the main one in Sphenoids sinus, we still don’t know, and a problem still didn’t solve.
I don’t think there is a big difference, high or small level toxins, I noticed about a Having a problem. If it’s stubborn, and don’t go away by itself, a body can’t remove, and it still will give some problem bc of pathogen.
Sorry I didn’t get about creatinine (my English not perfect), my creatinine is same always. Results of micotox and fungitell correlates just with treatment I do

 

[vision blue]

hi. the creatinine was the point of the post, but again directed to @used_to_race; your situation very different.