Detection of Mycotoxins in Patients with CFS

[mamakate]

Wonderful news! So happy for you and your husband. Thanks for sharing. Out of curiosity-- Is he taking the nystatin daily?

Yes, he is. He does it in the evening, with the chelating agent at least an hour or two before. He is also doing sauna every other day and is doing modified citrus pectin as a binder before bed (though I don't know that it helps.). The sauna for sure helps.

 

[switters]

The essence of what I read about Denis Hooper was that he was an incompetent pathologist with a perchant for losing investors money.

I am finding it difficult to get past this. After reading the LA Times article on Hooper, and considering the fact that RTL's methodology has never been published or peer-reviewed, as well as the research which clearly shows that mycotoxins from food show up in the urine, it is just hard for me to put much stock in the RTL results.

I don't doubt for a second that there is institutional resistance to the idea that mold causes illness, or to any new idea in medicine. But the LA Times article revealed a long history of negligence, incompetence, and possibly financial malfeasance on the part of Hooper that is frankly disturbing.

I am somewhat surprised that others here have not had the same reaction. If the LA Times article is correct, Hooper may have been responsible for the early death of at least one patient and an unnecessary radical hysterectomy in another. That is no small thing.

People can and do change. But my experience tells me that past history is a pretty good predictor of current and future behavior/results.

At the very least I would like to see some explanation for how we are supposed to know that the mycotoxins which appear in the urine are indicative of nasal fungal overgrowth, rather than exposure through food.

 

[switters]

Why would a repeat test be so much cheaper?

Another reason I am mistrustful of this lab. Why does the original test cost $800 if they can do a retest for $150 (now $180)? What is so different about the re-test? As far as I can tell, it's identical.

 

[Ifish]

At the very least I would like to see some explanation for how we are supposed to know that the mycotoxins which appear in the urine are indicative of nasal fungal overgrowth, rather than exposure through food.

In Brewer's 2013 study 104 of 112 patients with CFS took the mycotoxin panel were positive (93%). This compares to 55 heathy controls who all tested negative. This would support the theory that the CFS patients were positive because of something other than food. If the source of mycotoxins was food, then a significant number of controls would have also been positive.

 

[Ifish]

Another reason I am mistrustful of this lab. Why does the original test cost $800 if they can do a retest for $150 (now $180)? What is so different about the re-test? As far as I can tell, it's identical.

I would agree that the newspaper article and lack of proof of validity of the test are reasons for concern. It is interesting that Hooper is criticized for losing investor money on the other hand while being criticized for making too much money on the mycotoxin panel on the other hand. The test is identical. How are we to know how much money needs to be charged for the lab to cover expenses? We simply do not. If doctors across the US routinely run the test for CFS patients then it would be reasonable to assume the cost per patient would go down. Why is it that the costs of products (like led light bulbs) are always much higher when initially introduced, then trend down over time? As volume goes up, costs per unit go down.

You can look at the lower cost for the second test in many ways. On the first test you don't know whether the patient has a mycotoxin related illness or not, but on the second test you most likely are already mycotoxin positive. Perhaps the cost of the first test is reasonable given the labs overhead, but the later tests are steeply discounted to help a patient who is already sick with high mycotoxin levels.

 

[switters]

I would agree that the newspaper article and lack of proof of validity of the test are reasons for concern. It is interesting that Hooper is criticized for losing investor money on the other hand while being criticized for making too much money on the mycotoxin panel on the other hand. The test is identical. How are we to know how much money needs to be charged for the lab to cover expenses? We simply do not. If doctors across the US routinely run the test for CFS patients then it would be reasonable to assume the cost per patient would go down. Why is it that the costs of products (like led light bulbs) are always much higher when initially introduced, then trend down over time? As volume goes up, costs per unit go down.

You can look at the lower cost for the second test in many ways. On the first test you don't know whether the patient has a mycotoxin related illness or not, but on the second test you most likely are already mycotoxin positive. Perhaps the cost of the first test is reasonable given the labs overhead, but the later tests are steeply discounted to help a patient who is already sick with high mycotoxin levels.

Losing investor money is not a crime, nor is making money on a legitimate enterprise. My concern after reading the article was about Hooper's integrity.

Integrity is crucial in science because there are all sorts of ways that data and results can be manipulated before they even appear in a final published study. For example, a recent critical review by Charles Seife published in JAMA Internal Medicine found that clinical trial data determined to be fraudulent or mishandled by the FDA is rarely excluded from research studies published in scientific journals. Doctors and patients that see these studies have no way of knowing that the data they're based on are fraudulent.

I would really like to believe that the RTL test is legitimate, and provides actionable information. I am just having a hard time accepting that given what has come to light about Hooper. How do we know he didn't alter or manipulate the data in the Brewer study?

And even if he didn't, how do we know the mycotoxins are from nasal fungal overgrowth? Isn't it possible that CFS patients are more susceptible to the effects of mycotoxins in food?

I'm really glad to hear that some patients have recovered using Brewer's approach. Although I had an absolutely terrible reaction in my first experience with the protocol (for which the dosing was far too aggressive, due to lack of understanding of it by my doc), I have not ruled out trying it again. I am simply concerned about the lack of solid evidence.

 

[foxy loxy]

If everyone is so concerned about RTL, then why don't some of us get retested with BioLabs? Surely two positive mycotoxin tests from two different labs would be more concrete? BUT I will say for RTL that is looks like it is inspected more than BioLabs, according to their websites. Oh! and isn't BioLabs much cheaper the second time round too? Maybe it is to keep people coming back to get retested?

Another plug for the mycotoxin deal is that I read... (somewhere) that the level of mycotoxins found in the Urine assay, are much greater than what people ordinarily get from food consumption and that the labs don't register this normal amount.

For example the U.S only allows a certain amount of mycotoxins in milk. Whatever it is, is way lower than the amount most patients are showing in their urine. (unless somehow ill patients are getting all toxic from food?)

After having said all this, I still have ??? about Hooper's background too... the only thing that keeps me going is Joseph Brewer, and Dr. Neil Nathan and Irene Grant who use this protocol and say it works and the patients on this forum that say it is helping them. To me the best proof is real people saying, "Hey, its working."

Even if it all is a scam, what is your health worth? It's not painful, that expensive, and can be done in tandem with anything else you want to try. (its not like you are doing something for years and wasting time on one protocol) I would say we sick people don't have much to lose besides some money, (which is still way more affordable than some things)

I am sticking with it along with other things until SOMETHING works! I am a stubborn one! (BTW, Hooper isn't paying me to say this either! I am just desperate!!)

 

[switters]

If everyone is so concerned about RTL, then why don't some of us get retested with BioLabs? Surely two positive mycotoxin tests from two different labs would be more concrete? BUT I will say for RTL that is looks like it is inspected more than BioLabs, according to their websites. Oh! and isn't BioLabs much cheaper the second time round too? Maybe it is to keep people coming back to get retested?

Another plug for the mycotoxin deal is that I read... (somewhere) that the level of mycotoxins found in the Urine assay, are much greater than what people ordinarily get from food consumption and that the labs don't register this normal amount.

For example the U.S only allows a certain amount of mycotoxins in milk. Whatever it is, is way lower than the amount most patients are showing in their urine. (unless somehow ill patients are getting all toxic from food?)

After having said all this, I still have ??? about Hooper's background too... the only thing that keeps me going is Joseph Brewer, and Dr. Neil Nathan and Irene Grant who use this protocol and say it works and the patients on this forum that say it is helping them. To me the best proof is real people saying, "Hey, its working."

Even if it all is a scam, what is your health worth? It's not painful, that expensive, and can be done in tandem with anything else you want to try. (its not like you are doing something for years and wasting time on one protocol) I would say we sick people don't have much to lose besides some money, (which is still way more affordable than some things)

I am sticking with it along with other things until SOMETHING works! I am a stubborn one! (BTW, Hooper isn't paying me to say this either! I am just desperate!!)

According to the papers I've seen, the levels of mycotoxin that RTL is detecting are right in line with what has been detected in urine from exposure to mold in food. I will need to dig up the studies to give specific examples, but I remember this pretty clearly.

For me, at least, the treatment was extremely painful and incredibly disruptive. In fact, of all of the things I've tried in 15+ years of chronic illness, the reaction I had to this was among the most intense and long-lasting. It was not at all harmless.

Desperation I understand. And that is why I'm even considering doing it again, at a lower frequency, and with nystatin instead of ampho-B.

 

[foxy loxy]

According to the papers I've seen, the levels of mycotoxin that RTL is detecting are right in line with what has been detected in urine from exposure to mold in food. I will need to dig up the studies to give specific examples, but I remember this pretty clearly.

If this is the case? Then why are we even bothering with the test? Might as well just treat and skip Hooper! Sigh... I guess Brewer's 55 healthy patients don't eat moldy food? (either that, or we can't detox from moldy food!)

Switters, Sorry to hear you had a rough time with it. I guess if I had side effects, I would be more concerned too. I can't tell anything, which makes me nervous it is doing absolutely nothing. Was you problem flare-up of illness? Or side effects from the ampho-B?

Another thought on the mycotoxin validity... Why are Brewer's patients showing lower mycotoxin reduction along with feeling better? I would like to know if anyone retested feeling better and still showed up whopping amounts of mycotoxins....(I know some on here have felt better and had a reduction, just wondered if the opposite ever happens?)

 

[switters]

Roxanne,

I developed horrific sinus inflammation and eventually even lost my sense of smell entirely (which had never happened to me). I felt extremely fatigued, body aches, couldn't sleep, had terrible post-nasal drip, and couldn't think straight. I don't know whether it was a flare-up of illness or reaction to the ampho-B. I suspect it was both.

A big caveat, however: I was instructed to take the medication incorrectly. I was taking the chelation agent at the same time as the ampho-B, and I was taking them both twice a day. Given that some people here were only taking nystatin (a gentler choice than ampho-B) once every three days, I think what I was doing was way over the top.

 

[foxy loxy]

switters,

That sounds terrible! I started out like you twice a day on nystatin, but couldn't tell any difference. I take my chelating agent right before my medicine!!! Is that not the thing to do?

BTW, the info I got about food sourced mycotoxins was on Biotreks webpage under mycotoxin testing.

 

[Gingergrrl]

I consulted with the woman at RTL for close to an hour and she answered every single question that I had including medical, legal, and how to get a solid, reputable environmental company to come to our home next week to test all of our belongings for several types and levels of mold spores (to determine if any of our stuff is cleanable or can be salvaged.)

She explained the differences between the nasal swab and urine tests and what tests RTL offered vs. other labs. She in no way pressured me to do the test and since my whole family (3 people) are doing it, she gave us a family discount. She also said if I test positive, she can give me referrals to mold doctors.

I did the full urine test panel and mailed it a few days ago and if I test positive for tricothecenes, she said that is the gold standard for showing I am positive for Stachybotrys which I breathed in for 1-2 years through our air conditioning system at home and will be crucial for our legal case against our landlord and for future health treatment and may explain why I am currently so incredibly ill.

At this point Hooper's prior background at King Drew Med Center is irrelevant to me and my ME doctor and former ND told me RTL is the most respected in the country in a legal case. I have no reason to believe the results of my urine test will not be accurate.

 

[Soundthealarm21]

I consulted with the woman at RTL for close to an hour and she answered every single question that I had including medical, legal, and how to get a solid, reputable environmental company to come to our home next week to test all of our belongings for several types and levels of mold spores (to determine if any of our stuff is cleanable or can be salvaged.)

She explained the differences between the nasal swab and urine tests and what tests RTL offered vs. other labs. She in no way pressured me to do the test and since my whole family (3 people) are doing it, she gave us a family discount. She also said if I test positive, she can give me referrals to mold doctors.

I did the full urine test panel and mailed it a few days ago and if I test positive for tricothecenes, she said that is the gold standard for showing I am positive for Stachybotrys which I breathed in for 1-2 years through our air conditioning system at home and will be crucial for our legal case against our landlord and for future health treatment and may explain why I am currently so incredibly ill.

At this point Hooper's prior background at King Drew Med Center is irrelevant to me and my ME doctor and former ND told me RTL is the most respected in the country in a legal case. I have no reason to believe the results of my urine test will not be accurate.

For the case with your landlord, do you have a source of where the mold was growing?

 

[Gingergrrl]

For the case with your landlord, do you have a source of where the mold was growing?

Yes, we have documented indisputable proof of the source of the mold and have been dealing with this for over a year. We are moving out by mid-June and already gave notice. It is a long story and can't post the legal portions on the public board for obvious reasons but we have solid proof.

 

[Soundthealarm21]

Yes, we have documented indisputable proof of the source of the mold and have been dealing with this for over a year. We are moving out by mid-June and already gave notice. It is a long story and can't post the legal portions on the public board for obvious reasons but we have solid proof.

Okay, the reason I say that is because despite all of the countless positive tests from air samples we could never find the actual source of where it was growing. I'm not sure about where you are, but in Texas a source is an absolute must. Either way it ended up shafting us and we were left with no recourse. Sounds like you've got your eggs in your basket almost though!

 

[pemone]

Does anyone have statistics on the distribution of Shoemaker genetic haplotypes among the entire population, and among people with mold mycotoxin chronic inflammation?

I'm one of the so-called dreaded haplotypes 4-3-53. I read somewhere that is only 1% to 2% of the population, yet I see many people online claiming to be 4-3-53, so I suspect it is a larger group than 2%.

 

[Soundthealarm21]

Does anyone have statistics on the distribution of Shoemaker genetic haplotypes among the entire population, and among people with mold mycotoxin chronic inflammation?

I'm one of the so-called dreaded haplotypes 4-3-53. I read somewhere that is only 1% to 2% of the population, yet I see many people online claiming to be 4-3-53, so I suspect it is a larger group than 2%.

Well it makes sense that the people talking about it and know that they have it are the ones online because they're looking for answers because they're sick. I also have that halotype.

 

[Forebearance]

Does anyone have statistics on the distribution of Shoemaker genetic haplotypes among the entire population, and among people with mold mycotoxin chronic inflammation?

I'm one of the so-called dreaded haplotypes 4-3-53. I read somewhere that is only 1% to 2% of the population, yet I see many people online claiming to be 4-3-53, so I suspect it is a larger group than 2%.

I think Dr. Shoemaker said that around 24% of the population has one of the mold susceptible haplotypes. I haven't seen stats for the individual haplotypes.

Everyone I know with ME/CFS who has done the HLA-DR by PCR blood test has had one of the mold or multi susceptible or 1-5 haplotypes. So they are over-represented on this forum compared to the general population.

 

[Forebearance]

Hey everyone,
For what it's worth, I felt like I turned some kind of corner at the 8 month mark. It is a subtle feeling that I am on the right track. Even though I am doing this protocol excruciatingly slowly!

 

[out2lunch]

Coming to the party very late… but I'd like to add my two cents here…

I did RTL testing earlier this year. Negative for both afla and trich but hugely positive for ochra (9.38). Will consider retest later this year.

I'm doing my Therasage portable sauna daily w/dripping sweat production. Don't know how much ochra gets out through the sauna use (including increased excretion through kidneys/urine) but I've had to put CMS on the back burner for now. I've done CMS in the past but it really does a number on my gut.

I'm also doing the NasaTouch device with Sporanox and Argentyn 23 for breaking up biofilm. My insurance won't pay for treatment so this is cheaper for me than Brewer's protocol. I've been doing it for almost two months but haven't noticed any difference in sinus symptoms or herxing, etc. In fact, I was wondering how much of a fungal problem I actually have in my sinuses because of daily nasal irrigation I've done for years, using Grossan Breathe-ease XL (with xylitol) and Agrumax grapefruit seed extract. I do this to improve my nose breathing for CPAP use at night.

Does anyone know how nasal irrigation fits into this sinus fungal infection model of Brewer's? If someone like me, with lots of allergies and a definite need for clear nasal passages (CPAP user), does nasal irrigation faithfully every day for years on end, how likely is fungus to set up shop in the sinuses to begin with?

And what about fungus in the gut? How many of us have gut issues from hell? I sure do, and have for decades. Keeping gut fungus under control is like mission impossible for me, along with SRBs like prevotella.

I listened to Dr. Nathan's latest webcast from Friday and it seems to me that both docs -- whom I respect very much -- seem to gloss over the "other end" of the spectrum regarding fungus, i.e., the gut. The focus seems to be more on the sinuses than the intestines. I'm not suggesting that's a bad thing. But why is the focus more directed at the sinuses when so many of us have gut fungus overload?

Anybody know if fungus colonies in the gut aren't as much of a concern for mycotoxin production? I could be wrong, but that doesn't seem correct to me, if that's the conventional wisdom.

Oh, and two more things:

1) Have any of the usual docs like Brewer or Shoemaker or Nathan talked about fungus in the lungs? If breathing in mold spores from the environment can set up a chronic fungal infection in the sinuses, why not the lungs? And if you had fungus in the lungs, how would you get it out, other than systemic antifungals?

2) I, too, have the dreaded multi-susceptible haplotype along with the chronic Lyme haplotype. Yeah, double whammy. I am so blessed!