Detection of Mycotoxins in Patients with CFS

[Soundthealarm21]

I have a question for people doing Brewer's protocol or other treatments as that's what this thread has kind of turned into:

Have you made 100% sure you're no longer in a mycotoxin contaminated house? Nothing Brewer, nor Shoemaker, etc does will make any difference if you're still breathing the stuff in. I feel like a lot gets talked about in regards to ampho b, etc, but not much talk about making sure you're not exposing yourselves. It's really easy to overlook that part of it. Our house was basically a brand new house. It looked clean, smelled clean, etc. It wasn't until we couldn't figure out why I wasn't improving that we decided to test it and sure enough found high stachybotrys.

When it comes to testing I don't think you should rely on one test if it comes back showing a clean house. For example, the first test we did was ERMI which showed our house as in the top 95% of clean houses. That gave us a false assumption that the house was clean and I went several more months exposed because of that (and a C4a test in a normal range). We got an air quality test done and that's when we realized the house had stachy. Very long and expensive story later we're building a new house with mold resistant materials and we're testing the wood as it's going up to be sure there are no mycotoxin producing molds in the house.

I've made some great progress the last few months. I even got a gym membership two weeks ago and have been back in the pool swimming. I've not done anything special except for controlling diet and taking allergy medication.The main helping factor was just being out of the mold by far. I'm not saying you'll magically get better if you get out of the mold, but you sure as hell won't see any improvement if you're living in a home that has it even if you're doing some time of mold medication.

Just my thoughts as I feel people might be overlooking this crucial step. Avoidance is key.

 

[psz]

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.

As far as fungus in the gut, it may be secondary to sinus colonisation.

The nasal tract and specifically sinuses produce a large amount of mucus daily, which is unconsciously passed down the throat to the gastrointestinal tract, where the pathogens that are inhaled and stick to the mucus are supposed to be dealt with by means of stomach acid. This is one of the ways for the body to deal with airborne hazards and also one reason why binders and CSM work for some people even though the fungus isn't in the gut.

It is not clear whether the mycotoxins produced by the fungus in the sinuses are absorbed through the lungs, gut or sinus walls. I've seen scientific evidence for gut absorbtion, but lungs could be plausible too (although from memory, the mold spores themselves would be filtered out due to their size, but not necessarily mycotoxins).

 

[Gingergrrl]

I did the Lab Corp test last week to see if I have the bad mold gene but results are not back yet. I am assuming it is almost a given that I have the gene and may need some help from you guys to interpret it once I find out. Also waiting for urine test results from RTL but was exposed to six kinds of mold at home including high levels of Stachybotrys.

 

[Skiii]

So I had forgotten about the kind of numb, dead weight leg feeling. Fun.

Baths and sitting with my legs up a wall aren't helping. Other ideas?

 

[Skiii]

There's been a lot of talk about how this treatment can vary in length by patient, up to a couple years. But is there any update on how many patients Brewer has had that have completed the treatment and remain symptom free?

 

[mamakate]

There's been a lot of talk about how this treatment can vary in length by patient, up to a couple years. But is there any update on how many patients Brewer has had that have completed the treatment and remain symptom free?

I just checked my notes on our last visit, which was in January. At that point he said about 30 people were back to normal on the protocol, and two of those were people who were doing Nystatin instead of Ampo B. I'm assuming that most of those people are continuing to do at least a "maintenance" dose of treatment. He made it sound like that was experimental at this point. Once a patient gets completely better, do they need to continue doing the treatment every other day? once a week? That's yet to be determined, and may be different for different people. He did say that a few patients who got better quit the protocol completely and then relapsed, but did quite well once resuming the medication.

 

[Skiii]

Thanks @mamakate that is very encouraging!

 

[Ifish]

I have been meaning to post this for a while. I took three RTL mycotoxin panel tests in 2012 - 2013 while trying several unsuccessful treatments. In March I did the panel after a sauna. I expected to still have some pretty big numbers. I think this is pretty interesting. Here are the results:

DATE --------------------------OCHRATOXIN A ---------AFLATOXIN GROUP-----TRICHOTHECENE

Positive if:----------------------2.0 ppb ---------------------1.0ppb--------------------------.02ppb

Three test average
2012 - 2013--------------------3.29---------------------------.46------------------------------4.41


03/27/15
post sauna----------------------1.11----------------------------0-------------------------------.12

It took over a year to get the numbers this low. While these numbers are technically negative, they are still higher than they should be. Still, I think this shows a great deal of progress.

 

[waiting]

I have been meaning to post this for a while. I took three RTL mycotoxin panel tests in 2012 - 2013 while trying several unsuccessful treatments. In March I did the panel after a sauna. I expected to still have some pretty big numbers. I think this is pretty interesting. Here are the results:

DATE OCHRATOXIN A - AFLATOXIN GROUP - TRICHOTHECENE GROUP

Positive if: 2.0 ppb - 1.0ppb - .02ppb

Three test average
2012 - 2013 3.29 - .46 - 4.41


03/27/15
post sauna 1.11 - 0 - .12

@Ifish that's excellent! Do the reduced #'s still correspond to your functional improvements?

 

[Ifish]

@Ifish that's excellent! Do the reduced #'s still correspond to your functional improvements?

Yes it does. This is consistant with Brewer's findings: As the mycotoxin numbers go down, health improves. I also think this tends to show validity in the RTL testing. It is pretty straight forward:
1. Sick people have higher numbers.
2. Nasal antifungal treatment causes the numbers to come down.
3. As the numbers come down, health improves.

 

[JCamp]

Hi guys. Quick nystatin question. Noticed this week that my nystatin powder was no longer creating a thick gel-like substance when mixed with the 5ml distilled water. I called ASL and thy said it shouldn't have ever thickened up in the first place. They suggested using 10ml water.

Do other people notice the nystatin solution thickening (this clogs the nasatouch easily, btw).

Just want to make sure I'm doing it correctly. Also, note that Brewer's instructions are to mix with distilled water, not saline. This is different from what's on the nystatin bottle.

 

[Skiii]

Great news, iFish!

JCamp, mine doesn't get gel like. I thought the little line on the container said 15ml (I can't read it any more). I use distilled water to make the saline, then just use a bit of the saline for a few days.

 

[Sushi]

JCamp, mine doesn't get gel like.

Nor does mine.

 

[Gingergrrl]

@Ifish I am waiting for my results of the three panel test from RTL but don't understand how to interpret the numbers you posted and am new to all this. Can you explain it in the "for dummies" version?!

 

[Forebearance]

Hi guys. Quick nystatin question. Noticed this week that my nystatin powder was no longer creating a thick gel-like substance when mixed with the 5ml distilled water. I called ASL and thy said it shouldn't have ever thickened up in the first place. They suggested using 10ml water.

Do other people notice the nystatin solution thickening (this clogs the nasatouch easily, btw).

Just want to make sure I'm doing it correctly. Also, note that Brewer's instructions are to mix with distilled water, not saline. This is different from what's on the nystatin bottle.

Hi JCamp,
I agree with Skiii, it's supposed to be mixed with 15 ml of liquid. They've started marking a line on the mixing container, to be helpful. I've been using distilled water to make the saline solution, as Skiii does.

 

[JCamp]

Hi JCamp,
I agree with Skiii, it's supposed to be mixed with 15 ml of liquid. They've started marking a line on the mixing container, to be helpful. I've been using distilled water to make the saline solution, as Skiii does.

Thanks all! Brain fog moment -- I have been using 15ml (up to the line on the cup). The marking on the cup has worn off a bit now so I only read a 5ml when I looked this week. Soooo...that doesn't explain why for three months my nystatin was a gel consistency. Fortunately, I don't think that means the medicine didn't dispense. I just hope its properties weren't compromised. But it's definitely much easier to do and clean with the liquid consistency!

If anyone else has this problem, let me know.

 

[out2lunch]

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?)

Yup. It happened to me. I posted about this in another thread today:
http://forums.phoenixrising.me/index.php?threads/could-there-be-mold-issues.33506/page-2#post-601403

As I explained in my post, I did the VCS test both online and in my doc's office with the paper test last fall. I was negative in my right eye, and barely positive in my left. But 10 years ago, I was highly positive in my left eye, and solidly positive in my right, which moving from a moldy apartment combined with CMS treatment improved.

I've done half a dozen VCS tests over the past decade. I haven't lived in a moldy environment for over 7 years, and did 2 years of CMS each day that I stopped about 18 months ago for constipation issues. I didn't do anything else other than relocate and take CMS for the mycotoxins. I now have a far infrared portable sauna I've been using almost every day for the past month that I love for my myofascial pain.

When I started the daily CMS over 3 years ago, I waited about 3 months before redoing the VCS test. (I hadn't done one for 6 years before that.) My left eye was positive at 13, while my right eye was negative at 15. The test before that one showed left eye highly positive at 5 and right eye positive at 13, so clearly moving and doing the CMS had helped.

After I had been on the CMS for another month, I did the VCS test again; left eye was now negative at 17 and right eye was still negative at 16. I continued to take the CMS for another 18 months or so, retesting VCS the following summer (about 15 months later). My left eye was completely negative at 18 while my right eye was still stuck at 16. I stopped the CMS at the end of that year because of gut side effects and my need to address IBS and SIBO that was out of control, which I believe the CMS was worsening with chronic constipation.

Last fall, about 15 months after I did the previous VCS test, I retested both online and in my doctor's office with the paper test. The scores were identical, with my left eye returning to positive at 13, but my right eye staying negative at 15.

Stopping the CMS for about 9 or 10 months allowed the mycotoxins to build back up, even though my symptoms hadn't changed. While doing the CMS 2 years ago when my VCS test was solidly negative, I didn't feel any symptom improvement at all. In fact, because of the mess I had in my gut, which included high levels of unspecified fungus per Genova fecal testing, my IBS had worsened and was making me feel miserable. But there was no change in my fatigue or the typical ME/CFS symptoms I've had for 25 years.

Now we fast forward to this past January when I did my first RTL mycotoxin test. Aflatoxin and trich were both negative (aflatoxin was zero), but ochratoxin was super high at 9.38. I was concerned about worsening mycotoxins last fall when I repeated the VCS testing. And turning positive prompted me to do the RTL test. I decided to purchase the sauna when I got the elevated ochratoxin test result.

I've been doing the sauna for about one month, without doing CMS or any other binders. My latest VCS score has turned negative again, with left eye at 16 and right eye at 17. I don't feel any better on the energy front, but my gut is much better after repeating 3 weeks of oral Nystatin and Xifaxan for SIBO and fungus, which I've been doing about every 5 or 6 months since I started CMS 3 years ago.

When I think about it, I never had this much trouble with IBS or SIBO before I started CMS. But after being on CMS for 6 or 7 months, the SIBO issues began. And even though I've been off CMS for 18 months, I still do battle with SIBO and fungus that diets like gluten-free FODMAP don't resolve for the long haul.

Anyway, I also started NasaTouch sporanox once a day around the same time I started my sauna at my doc's request, but I sometimes forget to do it, so I've only done about 20 days worth so far. I doubt the sporanox made that big of a difference with the VCS score; I feel the sauna and possibly the anti-fungal treatment have been the biggest contributors so far. And I've resolved myself to doing the NasaTouch every day until I'm solidly negative on VCS again.


So, to answer the original question… I am better than I was 10 years ago, when my first VCS was horribly positive. While my overall fatigue hasn't improved, my chemical sensitivities have, and I have fewer problems with dehydration, sleep, and brain fog. Those have definitely improved, but not to the extent that I have my old life back. I'm still disabled and fatigue very easily, which makes life difficult. But I haven't been to the ER in over 2 years with sympathetic/parasympathetic meltdowns after chemical exposures, and I feel the reduction in mycotoxins is the reason, as evidenced by my VCS tests.

So why was my ochratoxin level so high five months ago, with VCS tests that were infinitely better than 10 years ago?

Having my left eye mildly positive with my right eye negative with an ochratoxin level at 9.38 does not make any sense. Unless the theory about ochratoxin food contamination is true, and the bulk of my ochratoxins are coming from external sources that don't stick around long enough to embed in tissue and affect vision.

Anyone else have this issue? Does going anti-mold with your diet make a difference in how you feel, like it does in me? (I posted about this in the other thread. The anti-mold diet changes are mind-numbingly depressing!)

In defiance of my functional med doc, I'm beginning to believe that the food contamination theory is correct regarding ochratoxin. If we are genetically incapable of eliminating mycotoxins from our systems, then why wouldn't mycotoxins from our food be a problem? Perhaps they are, and another poster's theory about the anti-fungal nasal medicine dripping down the esophagus into the stomach and gut is the real reason folks get better on this protocol. The drug is killing off mold on the food we consume. And the binders are picking up the mycotoxins on the food as well.

Has anyone studied how the anti-mold diet affects mycotoxin levels? Seems like a no-brainer to me.

 

[Ifish]

@Ifish I am waiting for my results of the three panel test from RTL but don't understand how to interpret the numbers you posted and am new to all this. Can you explain it in the "for dummies" version?!

It is a bit confusing. When I tried to post it originally the Phoenix Rising program kept bunching the numbers together. In order to space them out, I had to put dashes in between. It might make the most sense if you work each category from top to bottom.

Take Ochratoxin A for example. If you work from the top down you will see that a positive test result is 2.0 ppb (parts per billion). The average for the three tests I did in 2012 - 2013 was 3.29 ppb. My result from my March 27, 2015 test was 1.11 ppb.

 

[Valentijn]

It is a bit confusing. When I tried to post it originally the Phoenix Rising program kept bunching the numbers together. In order to space them out, I had to put dashes in between. It might make the most sense if you work each category from top to bottom.

If you click on the little editing icon to the left of the save icon (floppy disk), you can select "code" from the drop-down list. Stuff in the code box stays formatted, I think.

Alternatively, you can select a fixed width font to use with the dashes or periods for spacing. I like Courier New for that

 

[out2lunch]

I've had some time to think about my situation regarding my previous mold exposure and the highly positive VCS test I did during that exposure 10 years ago. There was no access to urine mycotoxin testing at that time, so I have no idea what level of ochratoxin would have been found in my urine. But given how insanely high my level was five months ago when my VCS test was mildly positive, I am starting to question the validity of the urine testing as it pertains to endogenous sources of ochratoxin vs exogenous sources.

I no longer live in that apartment with the aspergillis damaged wall board. But my current residence isn't completely mold free, either, and there's nothing I can do about it for the time being. How many of us are in this boat? I would venture most of us with this problem will never have mold-free living environments because of the cold hard reality of middle/working class economics and the prohibitive cost to build housing that doesn't encourage mold growth.

Trying to find mold free housing in the Pacific Northwest that's also "affordable" is almost impossible. Only new housing or recently renovated housing would potentially not have a mold problem, and those are rarely "affordable." Then there's the issue of knowing how mold-free your current home or a potential home actually is. Unless someone has hired an environmental engineer to do the Full Monty inspection of the residence, how do they know if their living areas are mold-free enough to not make exposure a problem? And what about other environments such as schools or the work place, or even one's automobile and the shops and medical facilities we drive to and visit regularly? How mold free are these?

I know my environment is moldy. I don't know to what extent because testing wasn't extensive, but I do know that it's not as moldy as the previous place that was tested and found to have very high levels of airborne aspergillis. But that's only half my battle. Keeping mold out of one's food is nearly impossible in this country unless you eat nothing but a whole food diet that's very fresh without grains or fermented products.

The standards to test for food molds and mycotoxins is a big deal in the U.S. because we basically don't have testing. Look at the problem with coffee, one of the most moldy, mycotoxic foods around. Same for teas, even herbal ones. And I drink small quantities of both every day. Think that contributed to my ochratoxin value of 9.38? I don't see how it couldn't, if my body is genetically predisposed to poor clearance of these toxins, especially with a dysfunctional gut.


Here's what I know about my mold problem based on years of VCS testing and doing CMS treatment:

When I was doing CMS every day, 2 years ago, even the small amounts that are given to folks with bile salt diarrhea, my VCS test was negative (18 left eye, 17 right). At that time, I still had large amounts of fungus in my gut that was not candida, as identified by Genova fecal testing, that I have since eliminated per recent Genova testing. So the daily CMS was obviously binding up mycotoxin on the food and mycotoxin in my bile. So which source of mycotoxin was greater? That's the main question.

I no longer do CMS but only far infrared sauna each day. My VCS test from eight months ago was left eye positive at 13 with right eye negative at 16. Now, after doing sauna every day for about a month, my left eye is negative at 16 and my right eye is 17. I'm confident that CMS would improve those numbers as they did before, but my gut can't handle it so I choose to stick with the sauna. It's obviously removing endogenous mycotoxins from my tissues and keeping newly introduced environmental and food-based mycotoxins from embedding themselves.

As for my RTL test from five months ago... I have zero confidence that the high ochratoxin value of 9.38 isn't mostly from food contamination. If my kidneys are flushing out this much ochratoxin from my tissues, then why isn't my visual contrast being affected like it was when I was living in an apartment rife with aspergillis? My VCS test back then was left eye positive at 5. That's really bad! But moving out of that environment and doing CMS turned the test completely negative. It didn't improve my fatigue, just mildly improved some of my symptoms like chemical sensitivities. But that's a whole different problem that I'm now confident isn't related to biotoxin illness.

I guess I just put myself in the "count me as skeptical" camp regarding the urine testing. And VCS testing is good for monitoring progress of mycotoxin removal. But in the grand scheme of things... what's really going on inside my body? Or your body? If I stay on CMS every day, my VCS is negative. But I still have ME/CFS symptoms and abnormal blood results for TMG, ADH, VIP, etc. I can improve them, but not turn them normal. And isn't that the goal of our physicians who charge an arm and a leg to see them?

How much energy, time, and most importantly, money, should be spent on trying to keep fungus and mold out of my body when it's EVERYWHERE in our society and completely unavoidable? I have bad haplotypes that make it nearly impossible for my body to eliminate mycotoxins. But how does someone like me keep mold and fungus out when I'm constantly surrounded by it and so prevalent in my food?

Maybe instead of worrying about nasal fungus or gut fungus that's difficult for me to keep eliminated for any length of time, maybe focusing on the clean-up and removal of the mycotoxins makes more sense. And that would be the sauna. Gee... other functional medicine docs like Amy Myers advocate this methodology instead of aggressive (and expensive) treatments to go after the source. Perhaps going after the source, which I believe constantly replenishes itself, isn't the answer. I guess we'll know in a few years if/when Dr. Brewer's and Dr. Nathan's patients return to ill health once they stop their nasal treatments and binders.

Yes, this was a lengthy novel. (Truthfully, I don't want to get up and do housework.) Thanks for reading.