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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Forebearance

    Wow! Whitney wrote this!

    Wow!!!
  2. Forebearance

    Has anyone felt worse on CSM?

    CSM does soak up your fat-soluble vitamins, and it appears to also soak up calcium. If it's affecting your teeth, I would be very very careful with it. Some people have lost teeth. I guess you could try taking a lot of minerals to make up for the ones that the csm may be grabbing. At the very...
  3. Forebearance

    Anyone tried Black Seed Oil?

    I just starting trying black seed oil because of the discussion thread about the latest OMF Sympotsium. https://forums.phoenixrising.me/threads/search-for-a-biomarker-ron-davis-interviewed-on-me-cfs-alert.77687/page-2#post-2230729 @SlamDancin , @LongMacc , @Oliver3 , @borko2100 , @hapi808 It...
  4. Forebearance

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    I think Dr. Davis said that SS-31 is supposed to have no side effects. But he thought it might be expensive. I appreciate your perspective, Alvin2. I don't know anything about scientific research, and to me it seems incredibly slow! Dr. Davis was talking about the same things he is going to do...
  5. Forebearance

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by Open Medicine Foundation, sign up here! Sept 7th 2019

    Thank you so much for the summary, Michiel. You forgot the part that was the most important, to me. Dr. Davis was listing the things his group was going to do in the future and he said that they are planning to look into mold! They are going to hire someone who knows about mold toxins. That was...
  6. Forebearance

    Full Recovery of 27 Severe Mycotoxicosis Patients (O2 / FIR / Sups / Antifungal / AIET) + POLL

    Thanks for sharing this, Jesse2233. I guess you could say I ended up on a customized protocol that included most of the elements of Dr. Rea's protocol. I did these things: 4 breaths a day of canned recreational oxygen (O+) -- taken before bed to improve sleep quality Lymph Enhancement Therapy...
  7. Forebearance

    Julie Rehmeyer's 'Through the Shadowlands'

    I just want to mention that I believe that having ME/CFS makes a person vulnerable to whatever inherent genetic susceptibilities they may have. So when ME/CFS patients find out that mold toxins really bother them and keep them sick, it is an aspect of their ME/CFS. It's not a new environmental...
  8. Forebearance

    Liver Flush and Biotoxins

    I've had rashes happen while detoxing. Skin seems to react that way sometimes.
  9. Forebearance

    Can I stay in my house? (CIRS/MCS)

    @rijichouno , I am so sorry to hear about your situation. It's impossible for anyone to tell someone else what they should do, really. But most people seem to base their decisions on whether they are improving or not in their current home.
  10. Forebearance

    reality television show 24 CFS/ME patients move out to desert

    Wow, @antares4141, what an idea! I would offer a couple of suggestions for you: First have an experienced mold avoider check your outdoor air quality to make sure it is good for mold avoiders. And second, sometimes people who are detoxing hard will physically react to other people who are...
  11. Forebearance

    What does the effectiveness of mold avoidance tell us in light of the latest research?

    I'm leaning towards 1. As far as 2 goes, I have had an absolutely classic case of ME/CFS and it responded well to mold avoidance.
  12. Forebearance

    Open Question on Mold and ME Recovery

    Best wishes with your plan, @MACO1234 ! I hope that it works out great for you! We all make a lot of mistakes on the journey to get away from mold toxins. The only thing I can think of to add is that the people I know who have done what you are planning on doing successfully have been people...
  13. Forebearance

    Can welchol make you feel worse? On Shoemaker protocol.

    I hope you feel better soon, @skyfall . I can't tolerate strong binders, personally. I have had to use Benefiber and even gentler things like oatmeal and apples. One thing that is between the prescription drugs and the soluble fiber is phytosterols. They are found at health food stores in the...
  14. Forebearance

    Can Dr. Brewer's Protocol be ordered without a prescription?

    Good luck, @SueJohnPat ! I hope it works well for you. The compounding pharmacy I've been using is now called Imprimis Rx. They changed their name when they were sold to another company (I think).
  15. Forebearance

    Detection of Mycotoxins in Patients with CFS

    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...
  16. Forebearance

    Interpreting HLA-DR test results

    @Valentijn, Dr. Shoemaker was a practicing physician, not a researcher.
  17. Forebearance

    Interpreting HLA-DR test results

    @bjm0360 , You poor kid! You've been through a lot.
  18. Forebearance

    Interpreting HLA-DR test results

    Hi @bjm0360 , My, you really had a lot of lab tests done. You must have a good knowledgeable doctor. I hope it was affordable for you to do all those. Well, Dr. Shoemaker uses his panel of tests to judge a patient's level of inflammation in some key areas. If you put all the results together...
  19. Forebearance

    Detection of Mycotoxins in Patients with CFS

    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.
  20. Forebearance

    Detection of Mycotoxins in Patients with CFS

    Hi Little Bluestem, It's a kind of footbath that has an electronic array sitting in it, that is attached to an electronic box. I don't know a lot about how they work. But I know that the goal of the footbath is to generate negative ions in the water, which get absorbed by the pores of your...
  21. Forebearance

    Detection of Mycotoxins in Patients with CFS

    @acer2000 , feeling irritable, tired, and having wonky vision all sound like they could possibly be symptoms of toxins being released inside the body. To answer your request for updates, @Skiii , I am doing okay and I just recently figured something out. I haven't been doing the FIR saunas with...
  22. Forebearance

    Please help with this mold issue and wearing clothes!

    Or, if your washing machine has mold growing in hidden places, you could have an appliance company take it apart and power wash it. They will pick up the machine and take it to their shop to do this. It isn't THAT expensive. It cost around $100 the time I had it done. When they brought the...
  23. Forebearance

    Please help with this mold issue and wearing clothes!

    Wow, I'm sorry to hear about your experiences, @jason30 . It's hard to give advice for your specific situation. But I wonder about your washing machine. Are you sure it's okay for you? Have you hand-washed your clothes to see if there is a difference? Do you air dry them, preferably outdoors on...
  24. Forebearance

    Ozone Therapy for Belongings

    I had good luck removing chemical type smells with an air filtering machine that had a VOC filter in it.
  25. Forebearance

    Fearing for my life. I don't know what is going on. Mold now? Please help

    I know Dr. Shoemaker is far from perfect, but I do think he genuinely wants to help sick people. And I think that his accomplishment of figuring out the chain reaction he calls chronic inflammatory response syndrome in response to biological neurotoxins is brilliant.
  26. Forebearance

    Throw my computer in the trash?

    Hi @stolpioni ! I'm sorry to hear about your predicament. Really only you are going to be able to tell if your newish computer bothers you or not. I agree with what others have said about cleaning it -- that could help remove any lingering spores and mold toxins in the dust on the computer. I...
  27. Forebearance

    Fearing for my life. I don't know what is going on. Mold now? Please help

    Yikes, @skyfall . Your situation sounds really tough. I am so sorry you are going through this. So you have enough abnormal results on Dr. Shoemaker's usual lab tests that your doctor thinks you have mold poisoning? I guess the next step would be to test your home with an ERMI, like your doctor...
  28. Forebearance

    Ozone Therapy for Belongings

    I've heard that ozoning items can help denature the mold toxins stuck to them. But ozone only works on exposed surfaces. So if there is a flap, a drawer, etc. that is covered up it won't get the ozone. I've also heard reports that ozoning can age plastics a lot. I wonder if it could also age...
  29. Forebearance

    Why now am I reacting to mold?

    I'm sorry to hear about your health troubles, @roxnhead. My experience has been that taking antivirals increases my reactivity to mold toxins. When my body starts killing viruses or anything else, it increases the level of general inflammation that I have. Mold toxins cause inflammation, so it...
  30. Forebearance

    Detection of Mycotoxins in Patients with CFS

    Never heard of him either. How sad.