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Detection of Mycotoxins in Patients with CFS

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

  1. consuegra

    consuegra Senior Member

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    I am in favor of ditching science for the moment. ME/CFS is a 19th century disease and treated as such. We have to deal with it as such. Brewer is getting some results and others will soon. We have to ask why? Clinicians are engaging this. My daughter, who is seriously ill, had a reaction to doing nasal therapy with EDTA and colloidal silver. The treatment produced a serious "drag:, which has dissipated upon stopping the protocol. Brewer and Cheney both moderate treatment protocols to move below herx reactions. It might take longer but it is the hallmark of any ME/CFS treatment.
     
    Last edited: Apr 11, 2014
  2. Ifish

    Ifish Senior Member

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    I don't see a need to ditch science. There are questions and gaps to be sure, and things are real preliminary, but plausibility is there. It seems pretty apparent that CFS patients are excreting more mycotoxins than healthy people. The big question is why? The idea that this all somehow steps outside the bounds of possibility as a matter of biology is really unexplained and does not come from a credentialed source. The good news is over time the treatment will either prove to be successful with many patients or it will not. This will not take a long time (relatively speaking) since Brewer is collecting data and the treatment is being applied by other physicians right now.

    If you google myctoxins in general and specifically aflatoxin, ochratoxin, and trichothecene, you can see how nasty this stuff really is and how the ailments they cause dovetails neatly with CFS. This is not proven by any means, but the possibility is there.

     
  3. dannybex

    dannybex Senior Member

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    To those who are considering starting the Brewer protocol, it's one of four different treatments the patient-run site Healclick is interested in tracking in order to study the effects these treatments. The results will be eventually presented to researchers interested in ME/CFS.

    Here's the link for more info:

    http://blog.healclick.com/mecfs/mecfs-treatment-project-announcement

    Note: All results will be made totally anonymous.
     
    Last edited: Apr 12, 2014
    Roy S likes this.
  4. cigana

    cigana Senior Member

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    mojoey and globalpilot like this.
  5. globalpilot

    globalpilot Senior Member

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  6. cigana

    cigana Senior Member

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  7. dannybex

    dannybex Senior Member

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    There are a lot of people who have had that surgery done only to have the problem come back, so I wonder if they didn't get all the 'bugs' or the biofilms...or what?

    I just recently heard of a woman on another site who has 'this', as a result:

    http://en.wikipedia.org/wiki/Empty_nose_syndrome
     
  8. cigana

    cigana Senior Member

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    It could be the same problem as with fecal transplants (as explained by DeMeirleir) - the infection comes back eventually because the underlying cause is immune dysfunction, which is what allowed the pathogen to take up residence in the first place.
     
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  9. cigana

    cigana Senior Member

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    dannybex likes this.
  10. dannybex

    dannybex Senior Member

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    Good point. As usual, it's never 'one thing'…but multifactorial.
     
  11. soulfeast

    soulfeast Senior Member

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    Ifish, Global Pilot and others doing this protocol,

    Have you had your HLA-DR haplotype tested (as per Shoemaker)?

    Specifically for Ifish,

    Do you know if Brewer has reported on patients whose HLA-DR haplotype has been tested? Wondering if there might be a difference in effectiveness due to a mold suseptible or multisuseptible HLA type. I think I understand that Brewer does not believe there is a detox issue, but wondering if he has tested his patients for this?

    Lastly, from what I understand, Shoemaker is not too keen on the RTL test. I think this is due to the fact (?) that the tests utilizes polyclonal antibody instead of monoclonal antibody, and polyclonal is susceptible to false positives.

    Has Brewer addressed this? Or RTL for that matter?

    Thank you for all of this great information!
     
  12. globalpilot

    globalpilot Senior Member

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    Yes, and I was multisusceptible.
     
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  13. Ifish

    Ifish Senior Member

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    I've had many surgeries on my sinuses but they never helped my chronic fatigue syndrome. My daughter had a baloon type proceduret she was far sicker afterward. She went from going to school full time to not going to school at all. So I would be very cautious.

    Brewer has indicated that in many instances sinus surgery will be required in order for his protocol to succeed. If the medicines can not penetrate the sinuses due to structural blockage it will be ineffective.

     
    Last edited: Apr 13, 2014
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  14. Ifish

    Ifish Senior Member

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    I was a patient of Shoemaker many years ago. I may have done this test at that time. I have not done it recently. He didn't help me at all.

    Brewer has not recommended I do this test. I don't think he recommends it generally. Althought we have not discussed this specifically, I don't think he is collecting any data on patients that have may have had the test performed.

    I speculate that Shoemaker does not like the test because it showes that he is wrong about alot of things. If CFS patients uniformly test positive this shows they are uniformly detoxing as well.

    As far as the accuracy of the tests are concerned, all I can say is that Brewer has indicated he has done his due dilligence and is confident with the accuracy of the RTL test.


     
    Last edited: Apr 13, 2014
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  15. Ifish

    Ifish Senior Member

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    Well, now I know what happens if the dose is too high. During my first week my symptoms became worse and worse. More fatigue, malise, body aches, chills, and disrupted sleep. I stopped after the sixth day and took a few days off. During this time I slowly rebounded. Brewer gave me the option to cut down to every other day or every third day on both the Chelating PX and the Ampho B. Alternatively, I can use the medicine daily but reduce the amount.

    My wife and daughter are both into their third week and it appears the dose it about right. Their experiences were similar but not as bad as me (although they claim I am just a whimp). The second week was not as bad as the first. Neither are back to baseline, but it looks like they will be able to stay the course. My wife is working full time and it has been difficult, but it looks like she should be able to make it through.

    Despite this experience I feel quite positive about it. Brewer said that there would be a die off reaction and there was. He said he'd probably hear from one of us and he did. So it looks like on average about one in three or four will have to adjust the dosage downward.

    I should emphasise how bad of idea it is to start out with a higher dosage than Brewer now recommends. Some brave soles have suffered quite severely so he could establish the correct dosage.

    One real intersting thing is that we are all having clear elaborate dreams. I have no idea what this means.
     
    Last edited: Apr 15, 2014
  16. Forebearance

    Forebearance Senior Member

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    Thank you so much for the report from the field, Ifish.
    I would probably be in your camp of people who get a strong response.
    I would like to find out what the minimum effective dose of these two things is.
    Do you have to worry about creating drug resistance?
    If you use less than 5 mg of the Ampho B, does the rest of the dose go to waste?

    Thanks if you're able to answer any of my questions!
     
  17. Ifish

    Ifish Senior Member

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    Forebearance,
    Sorry to say I can't help you much on these questions. Brewer is following the same procedure for everybody so I don't know if you could cut it down to a half dose or 1/3 dose from the very beginning. The good thing is that if things seem to be getting out of hand you can just stop and you will rebound. My wife is managing to stay well enough to work by skipping a day occassionally when she feels it is getting to be too much.

    I decided I'd rather do every other day rather than do 1/2 doses. I didn't ask Brewer's nurse about whether the last half dose has to be discarded or can be saved. Brewer didn't mention drug resistance. I don't know if he is having any problem with that.

     
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  18. dannybex

    dannybex Senior Member

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    I still wonder if some of these reactions could be mitigated by using some sort of binder (besides cholestyramine)? I know that Brewer has stopped using them, but just throwin' it out there. Thanks for the updates @Ifish . :)
     
  19. cigana

    cigana Senior Member

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  20. David.B

    David.B

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    I've been having similar reactions to the protocol. Although I find some of my detox symptoms to be a little different we match up on most of them. There was one point I had to stop the meds; once I did I found I rebounded fairly quickly.

    At one point I was feeling noticeably better so I thought I'd try a sauna for 10-15m. The 1st day went well, the 2nd day (a mistake in retrospect) really hit me hard. I ended up with swollen lymph nodes behind my ear and just felt terrible. When I get the courage to try that again I'll only do 1 day a week to begin with... Although I think I'll wait until my next appointment and ask about even using the sauna.
     
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