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Detection of Mycotoxins in Patients with CFS

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

  1. acer2000

    acer2000 Senior Member

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    Hmm I may have to try one of these foot baths. Do you think they help reduce reactivity? I have been trying mold avoidance and while I notice an effect my butt is kicked daily by exposures. I need to get to the point where I can improve my tolderance.
     
  2. Forebearance

    Forebearance Senior Member

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    I feel like the Nystatin reduces my reactivity, and the footbath helps me get the toxins out that are generated by killing whatever the Nystatin is killing.
     
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  3. Robert 1973

    Robert 1973

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    I'm interested to try this. Does anyone know where I can get Chelating PX nasal spray and powered/capsule Nystatin in the UK?
     
  4. acer2000

    acer2000 Senior Member

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    Do you still use the salt inhaler? Do you also feel this helps reactivity? Mine is bonkers... in need to take the edge off so I can try to treat. What have people found to help the intensification?
     
  5. Forebearance

    Forebearance Senior Member

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    Hey @acer2000 , I do still use the salt inhaler. I'm not sure if it reduces my reactivity, but it does help give me energy. It seems to be good for my thyroid gland.

    Hey, @Robert 1973 , You could check with the Imprimis pharmacy and see if they will accept prescriptions from and ship to the UK.
    http://www.imprimisrx.com
     
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  6. Robert 1973

    Robert 1973

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    Can anyone point me to a link which gives the exact protocol using Nystatin powder? I can't find details about how much water, Nystatin (mg of pure nystatin powder) and Chelating PX spay one is supposed to use.
     
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  7. junkcrap50

    junkcrap50 Senior Member

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    Nystatin is measured in IU, which is determined by biological activity of the substance. There are a few online calculators that can convert IU to mg. The Brewer protocol uses 50,000 IU of Nystatin dissolved into 5mg of water/saline. This calculator, http://www.etoolsage.com/converter/IU_Converter.asp, and other google results show 1mg nystain = 4855 IU nystain. So, 50,000 IU of Nystatin = 10.3mg nystatin powder. Then dissolve 10.3mg into 5mL of water/salin for your daily dose.

    Towards the bottom of this link, this person also made his/her own nystatin mixture and gives the IU to mg conversion and instruction on how he did it: http://biotoxinjourney.com/nasal-antifungals/
     
    Last edited: Dec 28, 2016
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  8. junkcrap50

    junkcrap50 Senior Member

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    I too would like to know the contents and concentrations of the Chelating PX spray that Imprimis or Sinus Dynamics uses. I want to make my own EDTA nasal spray but don't know what the concentration for EDTA is. Can anyone help?, @Robert 1973 did you find this information out?

    EDIT: Doh! I stopped reading the link I gave above after the nystatin conversion. This link, http://biotoxinjourney.com/nasal-antifungals/, also gives the ingredients and amounts of the Chelating PX. This PDF also says the EDTA concentration is 0.75%: http://www.functionalmedicineuniversity.com/BrewerProtocol1.pdf
     
    Last edited: Dec 28, 2016
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  9. Robert 1973

    Robert 1973

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    Thanks for your replies.

    The ingredients on the Chelating PX from Woodland Hills Pharmacy are as follows:

    "Chelating Agent PX 2ml Vial
    Each vial includes:
    15mg EDTA
    Polysorbate 80
    Glacial Acetic Acid
    Benzalkonium Chloride
    0.9% Sterile Sodum Chloride
    Sterile Water for Irrigation"

    The label says "EDTA 15mg/5ml". You use a syringe (without a needle) to draw out 5ml from a 120ml bottle of it. The the dose of EDTA would appear to be 15mg/day.

    See: http://woodlandhillspharmacy.com/compounds/biotoxin/brewer-protocol.html
    and: http://woodlandhillspharmacy.com/images/compounds/brewer_protocol.jpg


    According to http://biotoxinjourney.com/nasal-antifungals/ one 50,000 IU capsule = 22mg of pure nystatin:

    "Given the exorbitantly high cost of Nystatin and Chelating PX from ASL pharmacy, I decided to make up a comparable solution for a fraction of the cost. I called ASL Pharmacy and spoke to a pharmacist who confirmed that the Nystatin pills contained fillers like xylitol and gelatin (Hypromellose). The capsules are labeled 50,000 IU. The pharmacist said the 50,000 IU capsules contained 50,000 IU of active Nystatin and that it had an approximate weight of 22mg. I then weighed the material in one capsule at 365mg. In other words, there is about 343mg of filler in each capsule."

    I've no idea if this is correct or not.

    I've attached a PDF which a PR member sent me in a PM with the mixing instructions from ImprimisRX.

    I can't source the NasalTouch atomiser in the UK but I see the Rhino Clear Sprint atomiser is available from Amazon.

    I've not managed to source Nystatin, Chelating PX or EDTA in the UK yet but I am waiting to hear back from a private pharmacy and various other people. If successful I will add more info. (Imprimis and Woodland Hills pharmacies will only supply to US addresses with a US prescription.)

    Hope this helps.
     

    Attached Files:

  10. junkcrap50

    junkcrap50 Senior Member

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    I don't know if that's correct either. Seems off by double to me. But tahnks. I don't think 22mg or 10mg matters much, because my doctor, Dr. Brewer, says that 50,000 IU nystatin is already more than enough to be very effective.

    Also, my instruction were never to mix it into 15mL of water. It was always to mix it into 5mL. I personally detest Imprimis. They have no clue what they're doing: they've made me buy the wrong item, filled the Rx incorrectly, have sent a contaminated Rx, have given me terrible customer service, and do not stand by their NasaTouch atomizer's who's batteries are flawed and stopped holding a charge after 3 months, etc. I will likely never, ever deal with them again. I will also recommend to Dr. Brewer to find someone else.

    I've been looking to buy a RhinoClear that uses AA batteries instead of the Lithium Ion batteries. I have found them on other countries' amazon sites, such as amazon.it, but haven't gotten around to buying it. They are made by an italian company: http://www.flaem.it/en/flaem/2/aerosol_therapy/33/rhino_clear_sprint which used to advertise them as NasaTouch before they rebranded to Rhinoclear. So, if you go to the italian ebay or italian amazon, they should have it.
     
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  11. acer2000

    acer2000 Senior Member

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    Any update on the current thinking for gliotoxin?
     
  12. Ifish

    Ifish Senior Member

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    Interesting you should bring that up. I just saw Brewer recently. According to Brewer 99% of his patients have tested positive for gliotoxin. This is a bit discouraging, since the vast majority of his patients have been on nasal antifungals for a long time, so you would think some of his patients would be negative.

    Some of his patients (me included) went on oral antifungals in addition to the nasal antifungals, but this didn't seem to make any difference.

    Gliotoxin suppresses the immune system. Brewer thinks this may be the reason so many patients have activated viral infections, particularly Epstein-Barr and HHV-6. In the CFIDS world these viruses used to be a big deal, but treatment has not been that effective in most people. So now Brewer is treating some patients with oral antivirals in addition to the ongoing nasal antifungals.. Perhaps the lower numbers he is getting on other mycotoxins will be enough to render antiviral treatments more effective than they have been in the past
     
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  13. foxy loxy

    foxy loxy

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    Hi Ifish,

    How are you doing? Thanks for that last post. I found it very interesting, as I too have tested very high in gliotoxins. What do you know about gliotoxins? I assume this is a fungus? I have searched the web, but haven't really found answers??

    Right now My lyme dr has me on a STOUT antibabesia protocol. (which is malarial meds)

    I seem to be responding slightly more to this than anything I have tried.

    One thing I noticed, antiprotozoal drugs/herbs, also are very antifungal! Perhaps this is something to consider in treatment. Hope you and yours are doing well! All the best...

    Does Brewer notice ANY improvement in his patient on oral antifungals?
     
    Last edited: Mar 19, 2017
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  14. Ifish

    Ifish Senior Member

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    Hello foxy loxy,

    I have had several years of improvement with nasal antifungals, as have the vast majority of Brewer patients. Oral antifungals have not been very effective, although I do believe it has helped some patients.

    Gliotoxin is a type of toxin produced by mold and maybe yeast. Aspergillus produces gliotoxin. There may be others.
     
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  15. Roy S

    Roy S former DC ME/CFS lobbyist

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    Hi Ifish,
    Are the gliotoxin levels going down?
     
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  16. Ifish

    Ifish Senior Member

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    I haven't seen Brewer or been tested for six months. I plan to do both in the next couple of months. In January I started rinsing my sinuses with a bacterial culture called Bactoferm F-RM-52 containing Lactobacillus Sakei. (While still following Brewer's antifungal protocol.) A research study showed that people with chronic sinus infections lack bacterial diversity, and lack a critical friendly bacteria called Lactobacillus Sakei. The results have been remarkable. I have gone from chronic sinus infections and endless antibiotics to one sinus infection in six months. I believe the only reason I had the one infection is that I used a culture for to long, and it lost it's potency.

    Detailed information can be found at: http://lactobacto.com/2015/01/12/the-one-probiotic-that-cures-sinusitis/

    It should be noted this product is not manufactured for use as a sinus rinse.

    So the question I am now trying to answer is whether, over time, lactobacillus sakei can have an effect on sinus fungal growth and therefore reduce gliotoxin levels. I am hopeful I will have improved numbers on my next mycotoxin panel.

    Stay tuned
     
  17. leela

    leela Slow But Hopeful

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    Hi @Ifish , thanks for this. Can you share where you got the Bactoferm from? Did you have to do overnight shipping?
     
  18. Ifish

    Ifish Senior Member

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    You can get it on Amazon. Overnight shipping is not required. I put it in the freezer when I get it.
     
  19. leela

    leela Slow But Hopeful

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    Thanks! :thumbsup::hug:
     
  20. stetson28

    stetson28 If it aint broke don't fix it...but.

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    Hello Foxy Foxy,
    May I ask what your current protocol is, specifically for Babesia, but the lyme and other infections always interest me too? Thank you.
     

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