Detection of Mycotoxins in Patients with CFS

[detts]

So, my naturopath doesn't accept insurance. And ASL doesn't work with my insurance for the treatments, and now my insurance changed it's policy for compounds and won't cover the compounded cholestyramine. So glad I have health insurance that won't actually cover me getting healthy

Might need to try clays or something else cheaper along with charcoal!

I stopped the CSM after 7 months on it. Am doing bentonite clay and activated charcoal now. I think the CSM was starting to mes with my digestion.

 

[mallen12132]

From my experience I've noticed that almost everyone tests positive for atleast one mycotoxin in Realtime Labs mycotoxin panel, no matter if they had any known WDB exposure or not (or even ill).

I'm wondering if it's a pointless panel (misleading) to take, since these mycotoxins occour naturally in alot of our foods and in that sense it would be quite unusual to be completely negative. Unless you eat foods completely free of them ofcourse.

What would make a little bit sense however is that ME/CFS patients might tend to detox these substances slower, and for that reason have a higher tendency to get a positive result. But if this would be the case, what does it say about the patients mold exposure - not much.

In all studies I've found they always refer to "Negative control patients had no detectable mycotoxins in their tissues or fluids." and I can only find one study who confirms this, which is: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680627/ by Dennis G Hooper. Everything comes back to this one person and he is the one person running Realtime Labs. Have anyone found any other sources of healthy controls _not_ having mycotoxins in them - in either urine or serum?

Could anyone confirm if this LA Times article is about the realtime labs Dennis Hooper?
http://www.latimes.com/local/la-me-kdday3dec07-story.html

I'm sure alot of things in it is exaggerated in standard journalism-style. But some disturbing things pops up though like:

"The Health Care Financing Administration determined that Hooper had falsely claimed the lab was accredited by the College of American Pathologists. In fact, he had never applied for such accreditation, government records say. The regulators also found that Hooper closed the lab to avoid an inspection. The government banned him from owning or operating a pathology lab anywhere in the United States for two years."

"He captivated friends and colleagues in the mid-1990s with ideas for lucrative diagnostic and research labs."

"Colleagues and other investors say Hooper appeared to be the high-rolling businessman, entertaining them in casino suites and fancy restaurants."

Is this true? The part that almost anyone will test positive for at least one mycotoxin in their urine?

I tested positive for trichothecenes, but i was under the impression that the results were pretty much accepted as "valid." Is it true that even well people would test positive for one of them?

When I asked RTL about this at the time of testing they basically said that even foods considered to be "very moldy" like peanut butter wouldn't cause a readable level of mycotoxins in the urine.

Really would like clarification on this.. want to make sure I am fighting against the right problem

 

[andjo]

Is this true? The part that almost anyone will test positive for at least one mycotoxin in their urine?

No, you interpret too much out of that text. What I wrote was my opinion which obviously should not be taken as fact

As it is right now, RTL seems to be the only ones who does this test (I've tried to locate other labs but they all seem to be sending theirs to RTL). Which makes it hard to validate their claims. And it's not the mycotoxin levels i question it's the healthy controls I would like a better study of.. done by someone that's not bias.

 

[Ifish]

Is this true? The part that almost anyone will test positive for at least one mycotoxin in their urine?

I tested positive for trichothecenes, but i was under the impression that the results were pretty much accepted as "valid." Is it true that even well people would test positive for one of them?

When I asked RTL about this at the time of testing they basically said that even foods considered to be "very moldy" like peanut butter wouldn't cause a readable level of mycotoxins in the urine.

Really would like clarification on this.. want to make sure I am fighting against the right problem

I hope I can provide a little clarification for this and other issues that have been raised recently. To my knowledge, RealTime Labs is the only company that offers a test that measures mycotoxins in the urine. I know that Dr. Brewer is satisfied with the legitimacy of the test. I haven't seen any scientific criticism of the test, but as far as I know it has not undergone the rigors of scientific review by third parties. Historically insurance has paid for at least part of the cost of our tests, which might mean something. For me it has been a foregone conclusion the test is true and reliable, but at this point there is room to wonder about it. If I have the chance for further elaboration from Brewer next time I see him, I will try to do so.

Of course measuring mycotoxins in the urine doesn't mean anything unless you establish what levels are normal and what levels are considered high. In order to set these levels, Hooper tested a number of healthy individuals and set the line based on these results. These 55 healthy people eventually became the comparison or control group for Brewer's study.

So then, to specifically answer your question, no, not everyone will test positive for mycotoxins. Hooper's healthy controls did not, and I wouldn't expect other healthy people to have positive tests. I believe the great majority of these controls had a level of zero or perhaps a few with a very small number. I believe this is important to note, because it suggests that mycotoxins in food really don't cause any measurable rise in mycotoxin levels and adjusting the diet probably isn't important.

To understand Brewer's initial study, I think it helps if you consider that it is not what we would traditionally think of as a medical study. He did not have a hypothesis then set out to prove or disprove it. Instead he stumbled onto something with his patients that he realized was important, and as he was going along he decided that he should compile the information as best he can then publicize it.

So it began when a patient of his walked into his office with a positive RealTime Lab mycotoxin test result in hand . It didn't mean much to him at the time, but after some due diligence he decided to test other CFS patients and found that the vast majority tested positive for mycotoxins. In order to have a control group, he used the test results of the Hooper's 55 healthy individuals.

I'm no scientist, but it is pretty clear this isn't the best way to do it. Brewer didn't have the resources to create his own control group and even if he did, the study would be far from ideal.

I also think Brewer made a mistake by talking about prior mold exposure in his study. As a treating physician he naturally is trying to find out what happened to his patients so that he could better treat them, and it is quite logical to pose this question. However, it creates the impression that he only tested his patients with a prior mold exposure. This is not the case. As his CFS patients trickled into his office for appointments he gave all of them the option to do the RealTime Labs test. The fact that so many had known mold exposures came after the fact. I think the comments about mold exposure created confusion and should have been left for discussion at a later time.

The bottom line here is that you can throw the mold exposure question out the window, and what you end up with is some very strong information indicating that the vast majority of CFS patients have at least one mycotoxin level that is above a certain number while the vast majority of healthy individual do not.

There are reasons to have doubts, but after 23 years of trying everything else, I decided to pursue this until I am either well, or I have zero mycotoxins in my system.

 

[Soundthealarm21]

@mallen12132

I've heard of people after getting well their levels read 0's across the board. I can also say, through my own personal anecdote, that every time I've felt worse and have been exposed (confirmed with testing of where I was living) the mycotoxin levels rose.

I wish there was scientific scrutiny of the test, but at this point in the early stages it's not available.

 

[mallen12132]

@Ifish @Soundthealarm21 Fair enough, that really helped shed a lot of light on the situation for me. I appreciate it a ton.

I just wanted to make sure I wasn't undergoing this strenuous process to eventually find it wasn't my real problem. I understand that still remains a possibility, but I just wanted to make sure that this had validity while I go through with all of this.

I am going back to the hotel where I felt good again. I am going tomorrow night and spending a few weeks there. Hopefully I feel so much better in a few weeks that I can, beyond a reasonable doubt, say "yep, this is my problem."

Thanks to all of you for all the help so far. It means a lot.

 

[spindrift]

So, my naturopath doesn't accept insurance. And ASL doesn't work with my insurance for the treatments, and now my insurance changed it's policy for compounds and won't cover the compounded cholestyramine. So glad I have health insurance that won't actually cover me getting healthy

Might need to try clays or something else cheaper along with charcoal!

Skiii, zeolite and chlorella are two other sequestering agents that my environmental medicine doctor recommends.

Also, while not a sequestering agent, I get great relief from phenylalanine. I have always wondered why drinking Diet Coke, unlike drinking regular Coke, makes me feel immensely better; it's the aspartame. The Diet Coke seems to work better for me than taking phenylalanine supplements, I haven't figured out why though. Possibly low quality supplements? If anyone is considering supplementing with phenylalanine please do your research before taking it. It's not without side-effects.

Dr. Hope mentions in one of her papers:

"Phenylalanine prevents acute poisoning by OTA in mice [37]. Aspartame, a structural analogue of phenylalanine, is also a powerful inhibitor of OTA toxicity, at least in animals [38]."

LOL, ok, maybe I'm an animal And yes, I do VERY crazy things just to make myself feel better

I have attached the paper.

 

[Forebearance]

Hey everyone. I want to make sure I have the nystatin instructions correct. I mix the capsule in the distiller water and let it set for 3 minutes, right? Then I transfer to the nasatouch atomizer, I think and dispense just like the ampho. How strict are you guys on the 3 minutes?

Hi JCamp,
I first mix up a bottle of saline solution using the salt packets from the pharmacy and distilled water. Then I use 15 ml of the saline solution and add the Nystatin to it. Then I put it in the NasaTouch machine. I didn't read the part about letting it sit for 3 minutes anywhere. I guess it wasn't in my instructions! But it seems to be working okay anyway.

If you use plain distilled water instead of saline solution, I would think it would feel painful inside your nose & sinuses, wouldn't it?

 

[JCamp]

Hi JCamp,
I first mix up a bottle of saline solution using the salt packets from the pharmacy and distilled water. Then I use 15 ml of the saline solution and add the Nystatin to it. Then I put it in the NasaTouch machine. I didn't read the part about letting it sit for 3 minutes anywhere. I guess it wasn't in my instructions! But it seems to be working okay anyway.

If you use plain distilled water instead of saline solution, I would think it would feel painful inside your nose & sinuses, wouldn't it?

The distilled water and 3 minute wait were specific instructions from Dr Brewer. He even said those instructions differ from what's on the ASL info. That's why I posted here to make sure I was doing the steps according to his suggestion. I also rinse with saline in my neti pot right before I do the nystatin but that's my own preference.

I don't have any burning. I'm amazed at how much gentler nystatin is compared to ampho. I can't believe I tortured myself with the ampho for six months. I have done the nystatin twice now and haven't had any die off or side effect reactions. I did just have a great sauna session though...too sick to get out of bed before sauna and too much energy to go back to bed for 30 minutes after sauna!

 

[foxy loxy]

If I have the chance for further elaboration from Brewer next time I see him, I will try to do so.

Hey, Ifish, thanks your input about what you know about the RTL test! I feel a little like I am going "off on a limb" because my dr. doesn't know much about it! If you could look into the validity of this whole thing I would be VERY interested!!!

I figure if I am getting beat, I already have been beat on the expensive lab test! Continuing isn't cheap but it isn't horrendous and whizzing the nystatin up for ten minutes a day is pretty tame in comparison to getting needled every week! I am game to keep trying. (I wonder what Hooper drives? a Porche?)

Has anyone here ever retested and see there mycotoxin levels go down along with a drop in symptoms?

 

[andjo]

Also, while not a sequestering agent, I get great relief from phenylalanine. I have always wondered why drinking Diet Coke, unlike drinking regular Coke, makes me feel immensely better; it's the aspartame. The Diet Coke seems to work better for me than taking phenylalanine supplements, I haven't figured out why though. Possibly low quality supplements? If anyone is considering supplementing with phenylalanine please do your research before taking it. It's not without side-effects.

This is really interesting, because I had the same experience with aspartame. Early in my sickness I started supplementing with magnesium as I thought at the time I maybe was deficient. I did get alot of relief from it and I though great! but when I changed to another brand (when I realized the one I had been using contained aspartame) all those positive effects went away and I gave up on the deficiency idea. But reading up on mycotoxins they seem to be interfering with (uptake?) phenylalanine somehow.

Since one month back I've been trying with raw phenylalanine (using Source Naturals l-phenylalanine powder) but that doesn't give me any sort of relief compared to the aspartame..

Aspartame still scares the h-ll out of me but it seems to have some great binding properties for detox purposes.

Anyone else with own experience from aspartame/aspartic acid/phenylalanine ?

 

[Skiii]

I don't do three minutes with the Nystatin mixing. They told me to put it in the container, add the saline, and shake like crazy.

I believe I read something about aspartame in the depths of Shoemaker page... maybe on one of the FAQs.

 

[Soundthealarm21]

Has anyone here ever retested and see there mycotoxin levels go down along with a drop in symptoms?

Yes, I have. Last summer I was feeling amazingly better, and my level was technically negative although not a zero for tricothecenes.

 

[spindrift]

This is really interesting, because I had the same experience with aspartame. Early in my sickness I started supplementing with magnesium as I thought at the time I maybe was deficient. I did get alot of relief from it and I though great! but when I changed to another brand (when I realized the one I had been using contained aspartame) all those positive effects went away and I gave up on the deficiency idea. But reading up on mycotoxins they seem to be interfering with (uptake?) phenylalanine somehow.

Since one month back I've been trying with raw phenylalanine (using Source Naturals l-phenylalanine powder) but that doesn't give me any sort of relief compared to the aspartame..

Aspartame still scares the h-ll out of me but it seems to have some great binding properties for detox purposes.

Anyone else with own experience from aspartame/aspartic acid/phenylalanine ?

Thanks for the feedback. Interesting that someone else is getting more relief from the aspartame than from phenylalanine supplements. *slurps on Diet Coke* I really haven't looked into the science of why it works though, I just know it does. It can turn a miserable day into one where I can somewhat function. I'll leave it at that, I don't want to highjack this thread.

 

[foxy loxy]

Yes, I have. Last summer I was feeling amazingly better, and my level was technically negative although not a zero for tricothecenes.

Thanks, that is encouraging! I take it you are still on the protocol and have kept this positive change from last summer?

 

[Soundthealarm21]

Thanks, that is encouraging! I take it you are still on the protocol and have kept this positive change from last summer?

No i'm not on Brewer's protocol. This thread has turned into being about Brewer's protocol, but that's not how it started out.

I do hyperbaric oxygen, but I'm currently having trouble finding a stachy-free house. So unfortunately the changes are not still with me from last summer. I have a feeling the weather plays a part as well. I am overall improved from a year or two ago, but not as well as I was last summer.

 

[JCamp]

Hi everyone.

I've been doing nystatin every other day for a week now and I'm really needing some hope and encouragement. I don't think I'm having die off but I am experiencing a lot of vertigo and some very strong (and scary) emotions.

I feel quite angry that I did the ampho every day for six months while I laid in bed. I believed in it so much I was willing to tear my sinuses up with inflammation on a daily basis -- even though I had no prior sinus symptoms. I had a lot of hope and pushed through the impatience when I didn't see results at 2 months, 3 months, 5 months, etc.

Now I just feel hopeless. I'm doing the nystatin but having trouble believing in it. I'm 35. Living alone, and managing six caregivers. I'm soooo much more physically atrophied from laying in bed for six months (and most of five years).

I did my best to not let the posts of doubt about Brewer and Hooper get in my head about the validity of RTL but they have.

I'm doing my sauna when I can.

I can't bear the thought that it might be another six months before I see results. And if not, what then?

I know no one here can advise me....I'm not looking for that. I'm just seeing a very bleak future ahead. I don't have the energy to fight this anymore.

Sorry for the depressing post. Truly...we need to be more uplifting and I know that. But today, I need to be uplifted. I feel like those improving on this have more support or are more functional. I'm literally unable to walk across the room more than a few times a day. I did leave the moldy house last summer and am in a brand new, clean place.

I hope to see some light at the end of this tunnel soon. It's almost as if I have to grieve another failed treatment first.

 

[foxy loxy]

Please don't lose Hope JCamp! There are many things to keep trying in the world, if this isn't the ticket for you! Hope is the most precious thing for a sick person and I encourage you to try and keep it. There is more evidence Hooper is right than wrong for whatever that is worth and I think its worth doing at least a year. I say you gotta try something and I am game to try about anything. What works for one person doesn't for another. Just have to find the right thing for yourself! My Dr. is cranked up about gcMAF. Maybe that is something you could look into? It has good results with CFS from what I read!

 

[spindrift]

Just sending a big hug to JCamp.

 

[detts]

Hi everyone.

I've been doing nystatin every other day for a week now and I'm really needing some hope and encouragement. I don't think I'm having die off but I am experiencing a lot of vertigo and some very strong (and scary) emotions.

I feel quite angry that I did the ampho every day for six months while I laid in bed. I believed in it so much I was willing to tear my sinuses up with inflammation on a daily basis -- even though I had no prior sinus symptoms. I had a lot of hope and pushed through the impatience when I didn't see results at 2 months, 3 months, 5 months, etc.

Now I just feel hopeless. I'm doing the nystatin but having trouble believing in it. I'm 35. Living alone, and managing six caregivers. I'm soooo much more physically atrophied from laying in bed for six months (and most of five years).

I did my best to not let the posts of doubt about Brewer and Hooper get in my head about the validity of RTL but they have.

I'm doing my sauna when I can.

I can't bear the thought that it might be another six months before I see results. And if not, what then?

I know no one here can advise me....I'm not looking for that. I'm just seeing a very bleak future ahead. I don't have the energy to fight this anymore.

Sorry for the depressing post. Truly...we need to be more uplifting and I know that. But today, I need to be uplifted. I feel like those improving on this have more support or are more functional. I'm literally unable to walk across the room more than a few times a day. I did leave the moldy house last summer and am in a brand new, clean place.

I hope to see some light at the end of this tunnel soon. It's almost as if I have to grieve another failed treatment first.

Hugs and hang in there JCamp.