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Detection of Mycotoxins in Patients with CFS

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

  1. katcoff

    katcoff

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    Therefore, I assume that he will be out with data showing how his treatment helps CFS patients.
    Nevertheless, I'm confused as to why, if mycotoxins produce the symptoms shown above and they are different than CFS symptoms, that CFS would have different symptoms if CFS is caused by mycotoxins? Is it that CFS has some specific mycotoxin profile that is unique?
     
  2. dannybex

    dannybex Senior Member

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    His patients in the study were long-term ME/CFS patients. I'm not sure where you read that their symptoms are different. Perhaps you could list these 'different' symptoms?

    I'm also not sure if the specific myco profile is unique. But both his and Dr. Grant's patients are improving on the protocol, and I'll take any improvement over the steady decline I've experienced over the last 4 years.

    Here's a quote from his April 2013 study:

    "Patients (n = 112) with a prior diagnosis of CFS were evaluated for mold exposure and the presence of mycotoxins in their urine. Urine was tested for aflatoxins (AT), ochratoxin A (OTA) and macrocyclic trichothecenes (MT) using Enzyme Linked Immunosorbent Assays (ELISA). Urine specimens from 104 of 112 patients (93%) were positive for at least one mycotoxin (one in the equivocal range). Almost 30% of the cases had more than one mycotoxin present. OTA was the most prevalent mycotoxin detected (83%) with MT as the next most common (44%). Exposure histories indicated current and/or past exposure to WDB in over 90% of cases. Environmental testing was performed in the WDB from a subset of these patients. This testing revealed the presence of potentially mycotoxin producing mold species and mycotoxins in the environment of the WDB. Prior testing in a healthy control population with no history of exposure to a WDB or moldy environment (n = 55) by the same laboratory, utilizing the same methods, revealed no positive cases at the limits of detection."
     
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  3. soulfeast

    soulfeast Senior Member

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    Any ideas if a prescription for ampho b as a nasal lavage is easy to come by o course given a doctor's prescription? I've never heard of this. I have heard of nasal sprays.

    I found this and wish Dr. Grant would publish something more specific like this:

    http://www.nyee.edu/ent_rss_mts.html

    Found this as well:

    http://midwestent.com/sinus-allergy/page/15/
     
    Last edited: Mar 28, 2014
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  4. Ifish

    Ifish Senior Member

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    Getting a sinus fungal culture is difficult to do and highly inaccurate. A mycotoxin test from Realtime Laboratories will tell you whether you are excreting mycotoxins. A positive test will indicate either that you are currently exposed to environmental molds or you have a current internal mold colonization or both.

    Brewer has spent almost 2 years working on treatment. He started with oral medications with limited success. For the past 10 months or so he has tried a number of nasal treatments and has now settled on a rather simple protocol:

    1. Atomized "Chelating PX” contains EDTA and Polysorban X in the morning
    2. Amphotericin B in the evening

    These medications are provided by ASL Pharmacy http://www.aslrx.com/

    I don't know precise doses, but the people at ASL Pharmacy are very easy to work with. Some people cannot tolerate the Amphotericin B. It is important that is be dosed separately as it can bind with other atomized medications.

    It should be noted that sinus structure can be a limiting factor as it can prevent penetration of the medications deep into the sinuses.

    Some people have a herxheimer reaction and so the Amphotericin B treatement is limited to once per day. ASL and Brewer are working on other types of antifungal that might be as good or better and easier to tolerate.
     
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  5. Ifish

    Ifish Senior Member

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    The lack of more published data is understandably frustrating, but you have to remember that Grant and Brewer are practicing physicians. They are trying to help hundreds of chronically ill patients while trying to let others know what they are learning while they are learning it. One good thing about the progress they are making is that other practitioners who are willing can easily adopt these testing and treating methods.
     
  6. soulfeast

    soulfeast Senior Member

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    Ifish, thank you so much for this information!

    Does Brewer have patients use the atomizer for the ampho b or is that used as a spray.

    CFS Patient Advocate has an interview with Dr. Brewer where he mentions an atomizer.

    http://cfspatientadvocate.blogspot.com/2013/10/normal-0-false-false-false-en-us-ja-x.html

    http://www.sinusdynamics.com/products.html (the atomizer)

    Also from the article:
    *************

    I asked Dr. Brewer about nasal colloidal silver. He said that he thought that colloidal silver was a promising treatment.

    I asked Dr. Brewer about nasal colloidal silver. He said that he thought that colloidal silver was a promising treatment.
     
  7. Ifish

    Ifish Senior Member

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    soulfeast,
    Both medications are delivered with an atomizer provided by ASL called the NasaTouch. It takes five minutes. Brewer didn't mention colloidal silver to me. I don't think he currently considers that a good option. It appears his thinking on input/ouput has changed. Output is not an issue at all. Only input is the issue. If you can stop the input the output will take care of itself. I asked about charcoal, etc. He does not recommend this at all. Again, a major deviation from Shoemaker.
     
    Last edited: Mar 29, 2014
  8. Ifish

    Ifish Senior Member

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    I should mention that what ASL is doing is a major advancement that is fairly recent. The medications come in individualy dosed ampules. You pop the top, put the liquid in the device and deliver the medication.
    I read some papers on delivery of medications to the sinuses. It is much more complicated than putting some drugs in solution. Preparation, particle size, delivery system etc are all critical. A study I heard about showed that most products like Nasacourt basically blew in and down the throat, and wasn't delivered where it is suppose to be, although they may have improved this recently.
     
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  9. dannybex

    dannybex Senior Member

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    Thanks Ifish. A few questions:

    I'm curious -- what is Dr. Brewer's take when it comes to environmental 'input'? Does he tell patients to move out if they currently have mold in their apt/house -- especially stachy? I'm guessing the answer is yes?

    Or does he recommend remediation/cleaning?

    If one's current dwelling is 'clean', but has past exposure, does he recommend getting rid of past possessions that may have been contaminated? Or some sort of testing of those possessions?

    Also, does he put patients on a low-mycotoxin diet?

    Thanks in advance.
     
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  10. Forebearance

    Forebearance Senior Member

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    You know, I just saw an ad for the NasaTouch being sold at Target.
     
  11. boohealth

    boohealth

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    I would like to know Brewer's involvement with Realtime and the mycotoxin test. The Realtime test is propreitary and expensive. Are we certain there is no relationship of any kind that is in any way remunerative?
     
  12. dannybex

    dannybex Senior Member

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    Hmmm. Well, there's ONE reason to shop at Target. :)
     
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  13. dannybex

    dannybex Senior Member

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    Yes, we can. Researchers have to disclose these things in studies, and in this latest one it says:"Joseph Brewer declares no conflict of interest."

    Also, several other labs (like American Medical Laboratories) offer basically the same test. Same price as well.
     
  14. globalpilot

    globalpilot Senior Member

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    I wouldn't assume that. Do you know how time consuming/expensive it is to produce data and studies ?
    I sure will appreciate any data he produces.

    Remember.we all have genetic weaknesses and that may partially explain why we're all affected differently. I have heard of families in mold affected homes, all affected, yet expressing it in different way.
     
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  15. globalpilot

    globalpilot Senior Member

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    I don't know if a script is required or not, but Healthy Choices in Chappaqua, New york prepares it. I did see Dr Grant and she called in a request for it to be prepared for me. But that doesn't mean you need a doc - might be worth it to ask them. $85 for one month supply.
     
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  16. globalpilot

    globalpilot Senior Member

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    I just want to note this potentially very important fact I learned from Dr Grant and that is that she said amph B is the only known medication that breaks down the hyphae and that is why the other antifungals don't work. I do hope Brewer knows this while he considers other more tolerable antifungals. If what Dr Grant says is true, they may just not work.

     
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  17. Soundthealarm21

    Soundthealarm21 Senior Member

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    Just throwing this out there so other people will see it.

    I was diagnosed with toxic mold poisoning through the testing at Real Time Labs. High amount of Tricothecenes. Most recent test showed big decrease in Tricothecenes, but an increase in Ochratoxin.

    Was on the Patricia Kane protocol for a good while, but I just got too sick and my liver couldn't keep up.

    Currently being treated with Hyperbaric Oxygen Therapy. Waiting on more test results and will see the doc after my HBOT on Monday (and watching the Texas Rangers opening day! :)).
     
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  18. Ifish

    Ifish Senior Member

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    dannybex,
    Brewer thinks it is very important to remediate any mold issues in the house. He has not emphasised with me any need to get rid of stuff. Unfortunately this is a very complex question. I consulted with a variety of experts on this. Ultimately I decided not to throw my stuff out. I found several people on the internet that got rid of every posession that they owned yet they were no better months later. I needed some solid evidence that this made a difference and couldn't find any. I didn't want to end up both sick and without posessions. This is how alot of people ended up.
    Remember that mold spores, spore fragments, mycotoxins etc don't just hang around forever. They will break down biologically over time. To exist continually there would have to be continuous production.
    So if stuff clearly is making you sick then, yes, get rid of it. But the emphasis really needs to be on mold that is alive and growing, in my opinion. I think the ERMI test is the best place to start.
    Brewer has never mentioned a low mycotoxin diet. Remember in his original study the control group were all negative for mycotoxins. This meant they all fell below a certain level. But some did have trace levels. So I suppose this could have come from food or maybe just outdoor air. Like anything else I suppose a small amount won't hurt you.
     
    Last edited: Mar 29, 2014
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  19. Ifish

    Ifish Senior Member

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    boohealth
    Realtime Labs was doing the mycotoxin tests for a while before Brewer knew about it. I have known Brewer as my doctor for 17 years. If he indicated no conflict of interest I am confident this is true. Brewer is not a "mold doctor" trying to prove he is right. He was a CFS doctor when I met him 17 years ago and he still is. He discovered his CFS patients uniformly test positive for mycotoxins and is going down this path to try to help his patients.
     
  20. Ifish

    Ifish Senior Member

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    katkoff,
    There are three mycotoxins that can be tested for. There are other mycotoxins, VOC's etc that cannot be tested for. There is no real pattern that I know of. Some have one, some two, some three.
     
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