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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. I

    Detection of Mycotoxins in Patients with CFS

    I stopped using the EDTA ever a long time ago. I am fairly sure it is not necessary. Brewer has told me that he has other patients who quit the EDTA and have done as well without it
  2. I

    Detection of Mycotoxins in Patients with CFS

    Dan, I mix 1/8 tsp in 5ml distilled water. Any way you can send it up your nose is fine. I use a NasoNeb. Of all the substances I have sent up my nose over the years this is the most pleasant. It is very mild.
  3. I

    Detection of Mycotoxins in Patients with CFS

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

    Detection of Mycotoxins in Patients with CFS

    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...
  5. I

    Detection of Mycotoxins in Patients with CFS

    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...
  6. I

    Detection of Mycotoxins in Patients with CFS

    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...
  7. I

    Detection of Mycotoxins in Patients with CFS

    Avengers26, I use Chelating Px which is non-prescription to break down biofilm and the prescription drug Nystantin both of which are compound by Imprimis Pharmacy. Both products are delivered by a NasaTouch atomizer. I treat every other day or every third day.
  8. I

    Detection of Mycotoxins in Patients with CFS

    Skii, I saw Brewer a few months ago. RealTime Labs is now testing for gliotoxin. Brewer is finding that his patients are consistently positive for gliotoxin even if they have lowered their other mycotoxin levels. I believe the positive rate is something around 95%. Brewer believes the...
  9. I

    Mold "Expert" Pugliese Under Investigation

    "Mold Doctor Faces Investigation" http://www.fox5atlanta.com/news/i-team/136904322-story It is my understanding Pugliese is involved in multiple medical labs that provide medical testing relating to illness caused by mold exposure. They include: American Medical laboratories...
  10. I

    Detection of Mycotoxins in Patients with CFS

    "Company Packaged Nasal Spray in Laundry Room" http://www.fox5atlanta.com/news/i-team/137452497-story
  11. I

    Detection of Mycotoxins in Patients with CFS

    "Mold Doctor Faces Investigation" http://www.fox5atlanta.com/news/i-team/136904322-story It is my understanding Pugliese is involved in multiple medical labs that provide medical testing relating to illness caused by mold exposure. They include: American Medical laboratories...
  12. I

    Detection of Mycotoxins in Patients with CFS

    I doubt Brewer would involve himself with this, but I can't give you a definitive answer. Perhaps the best approach is to have the New Zealand Pharmacy or the GP contact Imprimis directly: http://imprimispharma.com/our-business/sinus/
  13. I

    Detection of Mycotoxins in Patients with CFS

    I think there may be several variables at play. The experience of my family is pretty similar to that of other Brewer patients. We have been on the protocol for two years. There is improvement, to be sure, but for most, something else needs to be done. I really don't think binders are the...
  14. I

    Detection of Mycotoxins in Patients with CFS

    I didn't mean to suggest you messed up. If it came across that way, I apologize. I was trying to help you think it through. It is never too late to start again with the Brewer protocol. As far as the copper supplement is concerned, I'm sorry to say, I just don't have any information on that...
  15. I

    Detection of Mycotoxins in Patients with CFS

    aquariusgirl, I can't give you medical advice, only food for thought. The Brewer protocol requires consistancy over a very long period of time. It can take anywhere from a couple of months to a couple of years to see results. Why did you only do it on and off? Perhaps you should consider...
  16. I

    Detection of Mycotoxins in Patients with CFS

    You can still get nystantin from Albers, but you cannot get alot of the other items such as the nebulizer, AmphoB, and Chelating Px.
  17. I

    Detection of Mycotoxins in Patients with CFS

    Imprimis http://imprimispharma.com/our-business/sinus/
  18. I

    Detection of Mycotoxins in Patients with CFS

    Here is something interesting. Today I was visiting my back pain management doctor. Completely out of the blue he told me he has another patient with CFIDS who was tested for MTHFR mutations and started taking methylfolate. The doctor stated that once he hit the right dose, the improvement...
  19. I

    Detection of Mycotoxins in Patients with CFS

    He is just testing the two polymorphisms. I think he is more interested in these two for several reasons. One is that correction of these defects has the most effect. In other words you are doing something that is pretty far up stream, so if you can have improvement here you can cause an...
  20. I

    Detection of Mycotoxins in Patients with CFS

    Dr. Brewer does not do fungal cultures. You might be familiar with the 1999 Mayo Clinic study indicating fungal infections are the primary cause of chronic sinusitis. I have seen an ENT for a number of years and we have discussed this study on several occasions. He indicated that the Mayo...
  21. I

    Detection of Mycotoxins in Patients with CFS

    I saw Brewer recently. Some of the new developments were covered in the recent radio show and some were not. Probably the most important item is the development by RealTime Labs of a test for gliotoxin. Aspergillis and Candida produce gliotoxin. Positive tests for this mycotoxin could change...
  22. I

    Detection of Mycotoxins in Patients with CFS

    October marks 18 months since we started the Brewer protocol. We continue to make progress. My youngest daughter was able to start a GED program in mid-August. She had tried to take a Juco class in June, but really wasn’t well enough to do it, so it was decided she wouldn’t try. But she has...
  23. I

    Detection of Mycotoxins in Patients with CFS

    I should also point out that RTL was in business long before Brewer started testing his patients, so it seems pretty unlikely he has an ownership interest. Brewer has discouraged us from retesting, and in fact we all went about 2 1/2 to three years between tests. Even then we decided on our...
  24. I

    Detection of Mycotoxins in Patients with CFS

    It is my understanding that Woodland Hills Pharmacy is now making Brewer Protocol medications. http://www.woodlandhillspharmacy.com/about_us.html I don't believe that Brewer is working with them directly.
  25. I

    Detection of Mycotoxins in Patients with CFS

    I don't know any details. The name of the pharmacy is Albers Pharmacy in Kansas City Missouri.
  26. I

    Detection of Mycotoxins in Patients with CFS

    It appears Brewer's office has worked things out with a local compounding pharmacy and the medications should soon be available, perhaps as early as next week. I plan to wait until next week and submit a request for refills.
  27. I

    Detection of Mycotoxins in Patients with CFS

    Brewer has stated that a very large number of his patients have tested positive for mycotoxins despite not having sinus symptoms. Most of these patients have improved with nasal antifungal treatment. My oldest daughter was positive for mycotoxins and has improved with treatment. The other...
  28. I

    Detection of Mycotoxins in Patients with CFS

    I don't think we can necessarily assume one can just put nystatin powder in solution and spray it in the nose and it will be effective. Perhaps it is, but we can't know this for sure. One thing I do know is that the formulation of nystatin for use in a nebulizer was problematic for quite a...
  29. I

    Detection of Mycotoxins in Patients with CFS

    Brewer's office found out Monday. They were given no advance warning. They are now in the process of finding another compounding pharmacy to make the medications. I am told this will take a month at least. We have four family members on the protocol. The frustrating part is that with some...
  30. I

    Detection of Mycotoxins in Patients with CFS

    Sorry you've had so much difficulty. I had similar problems until I cut back to Nystantin and Chelating Px every other day. Although I might now be able to do it every day, I'm just keeping the same pace. The trick seems to be finding the sweet spot. Brewer has indicated he has patients...