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Detection of Mycotoxins in Patients with CFS

Discussion in 'Latest ME/CFS Research' started by slayadragon, Apr 11, 2013.

  1. m1she11e

    m1she11e Senior Member

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    I agree it is a HUGE DEAL! I lived it and it was horrible!!

    This is where all this mold testing and clean environment is so frustrating! I am told that an ERMI is the standard and then someone else says to test a different way and that it is the only reliable test. If money were no object I would use every test out there because I know how sick the environment can make me because I have experienced it first hand.

    A good friend of mine has a beautiful house and it was about 4 years old when they went to have carpet replaced just for the purpose of decorating. Under the carpet was all this mold. There were no signs or smells. They moved out of the house and went through several mold specialists. They found a die hard industrial hygienist who knew of Eric the mold warrior and Dr. Shoemaker and was diligent that every bit of mold was cleared from her house. My friend and her husband and 2 kids had to move out for over a year as they would rip apart walls and floors and mold readings would remain high. They threw away most of their stuff and cleaned things (I know this is controversial) that were non porous with appropriate mold cleaners.

    Finally the mold levels inside went to safe or whatever standards make a place clean. The family finally returned to the house. There were so many over the top measures taken because my friend did not want her kids exposed. They had the money to do it and insurance was covering it as well. There home owners insurance is ridiculous now!

    About 6 months after they moved back in the industrial hygienist came back and tested at my friends request. Levels came back high in the kitchen although they had never been high in the kitchen before. The whole family was exhausted from moving out and finally back home that they chose to stay there and test again a month later. Mold was back down with the exact same test a month later. They did nothing to clear it between the two testing times and used the exact same testing.

    The industrial hygienist said she sees this often. Although she tests the outside and compares to the inside, she believes that mold from outside gets into the house more during certain times. She even said you do the best you can but nothing is totally reliable.

    My point is that although I believe that a clean air environment is optimal and we should all strive for it but its just not that easy and cut and dry. I also am engaged to a ridiculously healthy man. He is understanding to a point. Trying to convince him to spend hundreds or thousands on testing is nearly impossible. I certainly don't have it without his help.

    Without a doubt I believe in the Mycotoxin theory. That is why I am doing Brewers protocol. When I lived in the condo and became so horribly sick nothing helped me either. Even supplements made me sick. These same things I take now and they do help me. I know I am at least in a cleaner environment than I was!

    Its all so difficult to pull together! I truly would do extreme avoidance if it were at all possible. It is not!
  2. Soundthealarm21

    Soundthealarm21 Senior Member

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    @m1she11e

    Oh believe me, I know it's hard. I'm not talking about "extreme" mold avoidance. I'm talking about having a living space be as close as possible to what it is like outside. It is not normal and incredibly dangerous to have Stachybotrys in a house for example.

    I just pass this along because we wasted a lot of money not getting our house properly inspected while I didn't get any better.

    Wish you the best!
    m1she11e likes this.
  3. Soundthealarm21

    Soundthealarm21 Senior Member

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    I guess it's all opinion on what test is better and mine is that ERMI is not very reliable. An air quality test done by a certified (only in certain states do they certify, the rest are just a crap shoot) inspector and re mediated by someone certified is the best way to go. You can bring mold spores in from other houses, buildings, etc and it can get in the ventilation. If your AC unit is in high use and not properly maintained the moisture can create a breading ground for mold that would not be found by ERMI.

    Yes, the ERMI test was through Mycometrics.
  4. soulfeast

    soulfeast Senior Member

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    Ifish, how are you using these? Chelating PX in am and Ampho B in pm... where does the muperocin go?

    I wiped out. ENT scoped and showed on camera evidence of inflammation (possible white eosinophilic infiltrates.. he didn't say..but wasn't yeast). I have been off since the 11th waiting for blood in mucus to resolve. It has now. I may start back with the little I have left before expiration goes. I am not sure if it was the steroid that did the most damage or what. I bled after all treatments (I have two abx in my mix as well). I stopped the steroid and the bleeding issue was better.

    My advice is not to assume all reactions are due to die off and don't push through like I did. I pushed through the bleeding and I pushed through the crash.. kept on going. I was not sure if I had a cold like my son or it was from the meds or die off.. it could have been all of the above, but it did stop when I stopped the meds.

    Do you know if Brewer has thoughts on surgery? I am to have CAT scan and then might end up in surgery. I had surgery once and all cavities were "cleaned out" and rinsed with Ampho B.. but it makes sense that one good rinse might not take care of the issue (here I am!), though might be a good start (for people who need surgery).

    Also, Ifish, thanks so much for attending to this thread, responding to our questions and sharing all this great info!
  5. Skiii

    Skiii

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    Well, just started the chelating/ampho protocol today... here goes nothing.

    m1she11e, my doctor is actually starting me off this way. I have two young kids, family, small business, etc. Seeing how much I reacted to methylation protocols, he wants me to start slow and try to maintain some quality of life. In his words "it's not a race..."
    m1she11e likes this.
  6. Ifish

    Ifish Senior Member

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    Soulfeast,
    It is wise to back off. It is a marathon. I am now almost 4 months in. Improved, but with a long way to go.

    I did some research on the use of antifungals to treat fungal infections. It can take many months to a year or more, even then some cannot be defeated completely. This is much different then antibiotics which usually work fairly quickly, usually in about 10 days or so, are not often more than a month.

    Brewer has stated that in some instances surgery is necessary. If there is obstruction, the medicine cannot penetrate to where it needs to go and the protocol will fail.

    Brewer has me doing the Chelating Px in the morning, then wait at least an hour ( I just do it sometime in the middle of the day) and do the Ampho B, then the muperocin in the evening.
    soulfeast and Skiii like this.
  7. m1she11e

    m1she11e Senior Member

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    So is the Muperecin part of the protocol for everyone?
  8. Ifish

    Ifish Senior Member

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    It is definitely frustrating to try and get solid answers on how to evaluate a dwelling. When I went through the process I spent countless hours, wasted a lot of money and eventually go a result I felt was the best I could do given the state of the science. I do feel I learned a few things along the way.

    I think the ERMI test is the most worthwhile test. You can now do it with EMSL for $165. If the DNA of a particular mold is present there really is no debate about the existence of that particular mold. One can debate about the quantity of a particular mold and how significant that is, but you at least know some of that type is there. The report tells you how your home compares to other homes across the country. Again, there is room for debate but I think it is very useful information. It is informative how precisely my family's mycotoxin tests aligned with the harmful molds identified in the ERMI.

    The most common test done by companies in the mold business is the Spore Trap Analysis. This is an air test done with a vacuum. The technician turns it on, air is sucked in, and mold spores are collected, at least one indoor and one outdoor. This information is sent to the lab where it is viewed under a microscope. What you get is a comparison of indoor mold spores to whole outdoor mold spores. It does not identify a lot of other important things like mold fragments, mycotoxins or mold that is not airborne. Stachybotrys chartarum, for example, is rarely airborne and is very unlikely to show up on an air test but is a very dangerous mold to be present in a dwelling. Stachybotrys was identified in my ERMI test but not the spore trap test.


    I think the spore trap test provides useful information in that it shows shows indoor mold production. If the numbers are higher inside than outside it suggests that mold is growing inside the house. In our case we tested outside and three levels of our home inside. The test showed higher counts as you progress downward toward the basement, suggesting mold production in the basement. Of course you can do nothing about the outdoor mold, other than to filter it when it does get inside, but if you have indoor production, you can do something about it.

    Regardless of whether you can test or not, there are a number of steps one can take to determine if there is mold growing inside the house. First you can get an inspection. I had a number of inspections done to my house and they came up with nothing. A lot of companies will do a visual inspection for free. Maybe they will try to sell you something, but you don't have to buy it. The more people that look, the more likely they will find something.

    You can go to Lowes or Home Depot and buy a moisture meter. It is a handheld device with two prongs. This is generally used in construction to see if something (like mortar) has dried out. It is not as sophisticated as one that would be used by an industrial hygienist, but it does work. I was all over my house with it. I didn't feel good at all at the time so I would do a room a day. I covered it inch by inch and found nothing.

    I never did find actively growing mold, but I did find out that the humidity in my basement was too high. So the next thing that can be done inexpensively to buy a humidity gauge. I finally figured out that the reason my ERMI showed a high level of bad mold was that humidity in my basement was high enough to keep it growing. I had a mold problem years earlier that was fully remediated, but I had enough humidity in my basement to keep it growing . A dehumidifier was all I needed to deal with this issue. Now I always keep it below 50%. At this level mold cannot grow.

    I spent quite a bit of money to have my house treated with TM-100. I realize not everyone can afford that, but I think we should all keep this in mind: In order to be permanently present, mold must be continuously grown. It may take a very long time for the mycotoxins to dissipate and for the mold and mold fragments to break down biologically, but if you eliminate moisture and humidity you are definitely taking positive long term steps.

    There are a number of mold killing products out there including a number of products that are disbursed with foggers. One needs to be very cautious before using mold killing products because the product itself may be harmful. If you go to Amazon you will see reviews on several of them. I can only vouch for TM-100 based on my personal experience. Unfortunately for those on a limited budget, this product is used only by professionals. One intriguing possibility in my opinion is a product called EC3 which is sold by a number of vendors, including Amazon. This product was evaluated independently by RealTime Labs and found to be effective in eliminating mycotoxins. This does not necessarily mean it is an effective product at killing mold. The evaluation can be found at the following site:
    Last edited: Jul 22, 2014
    m1she11e and Skiii like this.
  9. Ifish

    Ifish Senior Member

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    Brewer is finding his way on this one. He believes at least some of his patients have multiple antibiotic resistant staph in addition to mold colonization. He does not believe there is a good test for it. He is trying mupirocin on some of his patients, focusing on those with chronic sinusitus.

    My 18 year old daughter and I have been on the mupirocin for nearly two weeks. I had mild die off symptoms and she had major die off symptoms. We are both better now. My early take is that this is really helping both of us.

    So Brewer is not using mupirocin on most of his patients. I for sure wouldn't think about it until the major mold die off is over.
    Forebearance likes this.
  10. Soundthealarm21

    Soundthealarm21 Senior Member

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    @Ifish

    Great info and thanks for sharing.

    The problem I have with ERMI is that it falsely told us that our house was safe and then I proceeded with treatment not knowing I was living in a very toxic house. I wasted thousands of dollars on treatment based on that test and assuming that my house was safe.

    We had an air quality test done and immediately it showed Stachy and Aspergilus among many others. Having a professional there to walk through the house we were able to identify that my parents had brought most of the mold in with them from my grandparent's house when they passed. They had had horrible flooding in the basement and was a breeding ground for mold. Upon close inspection the professional could tell us all of my Mom's yearbooks were covered in mold and a ton of other items.

    ERMI was not able to show that by taking samples from 2 square feet of carpet with no professional looking over amateurs.
  11. Ifish

    Ifish Senior Member

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    Point well taken. Hopefully someday there will be standardized, scientifically validated, affordable testing that can be done by professionals who understand the health ramifications of indoor mold contamination. Interesting that you and I had opposite results. For you, the ERMI test missed something critical. For me, the ERMI test found something critical that was missing from other tests. Perhaps the answer is to do as much testing as one can reasonably afford.
    m1she11e and Soundthealarm21 like this.
  12. Skiii

    Skiii

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    Ok, I have a slightly off-topic question, but I don't have a doctors appointment any time soon and just wanted to know if any of you had thoughts.

    I have noticed over the past couple months that my knees creak when I walk upstairs. No pain, no pressure, just creaky noises. I don't recall ever hearing it before. I'm a little scared that the cholestyramine and charcoal may be eating up nutrients for joint health? Any preliminary thoughts on that?
  13. Soundthealarm21

    Soundthealarm21 Senior Member

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    To me, that does not sound very likely.
  14. Forebearance

    Forebearance Senior Member

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    Interesting, Skiii. For what it's worth, I take 600 mg of Co Q-10 a day.
    But back when I overdosed on the methylation supps, I was only taking 200 mg a day. (if I remember correctly)

    Also, my joints make cracking noises at times too. It seems to be associated with good things happening, for me. I think it might be associated with detoxing. If your joints don't hurt, then I think it's okay.

    On the other hand, if your joints hurt, that may be a sign of a build up of toxins in your body. At least it was for me.

    Cholestyramine can remove any fat soluble vitamin or apparently, some minerals from the body. I had trouble taking it because it removed too much calcium and I need lots of calcium already. So it might be wise to do a review and make sure you're getting enough of the supplements you need. And eat plenty of healthy fats.
    Last edited: Jul 25, 2014
  15. cigana

    cigana Senior Member

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    For those of us who can't get ampho b, it would be interesting to discuss alternative options. This paper shows the essential oil cassia oil (Cinnamomum aromaticum) is effective at inhibiting biofilm. So it could be used in a diffuser...I wonder if there are any others.
    EDIT: yes there are according to this site: http://roberttisserand.com/2012/10/tea-tree-oil-biofilm/ and this site: http://curezone.com/blogs/fm.asp?i=1735341
    says
    Last edited: Jul 25, 2014
    Little Bluestem likes this.
  16. detts

    detts

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    I started on the chelating PX and amph B 5 days ago. I am also doing rifampin and CSM. I felt ok the first day but by day 2 I was feeling miserable with a constantly dripping nose, sore throat, congestion in head and sinus- like I was having really bad hayfever. I was fatigued and my muscles ached and neck was stiff. This went on for 2 days- oh and I got nose bleeds too. Day 4 evening I started to feel a bit better- today I am feeling a bit better again - although head is congested and nose runs too as well as feeling sore. However it is now no worse than I feel when having seasonal allergies. If it doesn't get worse I feel that this is a tolerable treatment. Throat still a bit sore.
    Forebearance and soulfeast like this.
  17. redaxe

    redaxe

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    Trying to get my head around the content that has been raised here (there's a lot!) and summarise things a bit for the benefit of myself and others.

    So we know from this study that if a patient has a diagnosis with CFS it is likely that they will have harmful levels of mycotoxins in their body.
    That leads to the question of where do the mycotoxins come from? Logically I can see only 2 possibilities here.

    1) The poisons come from inhaling dead or inactive spores and aerosols that release mycotoxins in the sinus & lungs and thus accumulate in the host who has a gene deficiency preventing them from removing the poisons quickly. The buildup of toxins gradually makes the person weaker until they are incapacitated and then usually wrongly diagnosed with CFS...
    or
    2) The poisons come from inhaling live spores which colonise the sinus and/or lungs and release mycotoxins which overwhelm the hosts immune system (particularly in people with genetic difficulties in removing toxins) and poison the person until they are so sick they are incapacitated and then given the 'CFS' diagnoses and given prozac by the wonderfully enlightened pharmaceutical industry educated doctors out there....

    However the doctors who are experts in this (Brewer & Shoemaker) seem to believe that Mold colonises the sinus (so we are looking at the second option above). Or perhaps we have a combination of the 2 but the second one must be the most serious as a patients health will not improve until the infection is removed.

    Therefore treatment should be a combination of the following....
    1)
    Avoiding moldy buildings where spores can either continue to reinfect the affected tissues or new mycotoxins be absorbed increasing the toxic load. The other possibility is that with an inflammatory immune response any exposure to moldy environs will trigger a massive inflammatory mast-cell activated allergic response making the patient relapse.
    2) Immune and neurological support (Vitamin Methyl-B12 as this is made deficient by mold and could also ironically explain why B12 is regarded as one of the best treatments for CFS, Elemental iodine as most of us are deficient in iodine, and whatever else people find helps..... Melatonin, Magnesium, CoQ10, Vit C etc...)
    Vitamin B12 and Mold http://www.hindawi.com/journals/tswj/2007/923182/abs/

    3) Detoxing agents (Cholestyramine, Glutathione & Chlorella amongst others)
    4) Antifungals (Sporazol) and Herbal treatments such as Cryptolepsis
    5)Bio-film busting drugs or herbs to complement the action of antifungals.
    Last edited: Jul 30, 2014
  18. aquariusgirl

    aquariusgirl Senior Member

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    I get die off on the amphotericin B /chelating PX ....less neurological inflammation .....but don't notice anything if I go off of it....no improvements....anyone else?
  19. m1she11e

    m1she11e Senior Member

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    Just an update...

    Im about 3 weeks into the protocol but have been doing it every 3 days after feeling too wiped out at every day. Like clockwork I feel horrible the night I take the Amph B and the whole next day. I start to feel better the day after that and then I wake feeling almost normal and its time to take it again. :( This last time I did the treatment I didn't feel all that bad the next day. I did not wake up with the horrible headache and was not nearly as fatigued. I was even able to go to the gym again. I take this as a sign that I am ready to go to every other day.

    I think drinking a ton of water, drinking 3 of my gross green smoothies a day and taking my chloriphillin has helped a lot too. This is the first thing I have ever done that actually fits the pattern of what I believe is a true die off.

    I have not had any soreness in my nose or bleeding at all.

    Michelle
    Forebearance and soulfeast like this.
  20. redaxe

    redaxe

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    How many people use N-acetyl Cysteine as part of their anti-mold/mycotoxin treatment? It seems that NAC has a number of benefits that all seem to relate to mold poisoning. Brewer also mentions it in his latest paper.

    1) It's a glutathione precursor

    2) It has been clinically shown to assist with a range of neurological and psychological illnesses in some cases better than any pharmaceutical drugs available, without the dangerous side-effects that many drugs like Prozac cause which often make CFS patients feel worse (mycotoxins are neurotoxic and will cause brain problems as anyone with CFS will know - NAC seems to reduce neuro-excitotoxicity & oxidative stress that damage neurons)
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044191/

    3) It seems to help in balancing the T helper 1/2 response thus reducing the inflammatory cytokine response
    http://www.ncbi.nlm.nih.gov/pubmed/20194814

    4) Shown to provide protection against the effects of mycotoxin toxicity in broiler chickens
    http://ps.oxfordjournals.org/content/80/6/727.full.pdf

    5) It's a methyl donor so it should help with methylation

    6) It helps to remove heavy metals thereby reducing the patients toxic load
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1533084/

    7) It helps degrade or prevent biofilm production possibly by cleaving disulphide bonds. This should help the immune system as well as the action of antifungal drugs. One of these studies found effect against Staphylococcus which Brewer is finding in conjunction with mold.
    http://www.ncbi.nlm.nih.gov/pubmed/19899620
    http://www.ncbi.nlm.nih.gov/pubmed/23642281

    Some people here have reported negative side-effects so it seems like it is something that people should consider taking on a low dose and building up as tolerated. But I take 600mg twice daily. The stuff tastes absolutely vile in powder form so you need to take it in capsule form. The brand I use is http://www.bulknutrients.com.au/buy/liver-support-complex/LSC. I like this one because it combines Acetyl Carntine, Milk Thistle Vit E & Lipoic Acid as well so I think its great to get all these essential antioxidant & detox support supplements in 1 capsule.
    Last edited: Jul 31, 2014
    cigana and soulfeast like this.

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