• Welcome to Phoenix Rising!

    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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  1. Lalia

    Looking for various detox protocols

    Have a look at the Remission Biome project happening on Twitter (they also have a website). If you’ve experienced remission events in the past, you might be a good candidate.
  2. Lalia

    Treatment for shortness of breath (air hunger)?

    Would you mind explaining more about the folate cycle and the role B1 and potassium play? I don’t know much about this at all. Many thanks 🙏
  3. Lalia

    Multiple binders

    So interesting @hb8847 thanks for sharing your update. I’m really pleased to hear you’re able to tolerate oils and meat again - understand how frustrating it is to be on a restricted diet and still trying to get all your nutrients. Did you lose any weight on the elemental diet? That would be my...
  4. Lalia

    Multiple binders

    Thank you @Rufous McKinney just to clarify, do you think you accumulated heavy metals from the bathwater? I’m curious because I’ve been having a bath once a night for the last few years. At one point a naturopath recommended it to help w/ gentle detox (sweating). But now I’m wondering if it’s...
  5. Lalia

    Multiple binders

    Hi @lenora I've just sent another OAT test off, so hopefully that provides some answers. My bloods are always normal but I suspect I’m deficient in potassium and calcium. I don’t get enough from food and supplement a lot of magnesium and sodium. Is there a better way to get an accurate read on...
  6. Lalia

    Multiple binders

    @hb8847 how are you going with the binders? @seamyb interesting to hear you're going after candida, let us know how you're getting on. I've also stopped pursuing binders. I've been deteriorating rapidly over the last few months after molybdenum supplementation, which makes me think copper...
  7. Lalia

    Multiple binders

    @Rufous McKinney do you mind me asking - did you feel metal poisoned from the baths? Or from something else?
  8. Lalia

    Treatment for shortness of breath (air hunger)?

    Could it be the phytic acid in grains is causing mineral deficiency? Just a thought, more information on the web: https://www.healthline.com/nutrition/phytic-acid-101
  9. Lalia

    Multiple binders

    Just checking in to see if you decided to reach out to the Burghwood Clinic? I had a look at their website & think they look interesting
  10. Lalia

    Multiple binders

    Have a look at the PolyBio Foundation and Amy Proal, they’re digging into long c now but prior to that they were exploring how all pathogens (inc fungal) trigger chronic disease. Proal is active on Twitter & I believe she has (or had) ME herself.
  11. Lalia

    Multiple binders

    I have a complete loss of oral tolerance thanks to mould and metals. Can only eat a handful of foods & if I stop eating one I lose tolerance to it.
  12. Lalia

    Multiple binders

    thanks @renski so it’s a matter of Epsom salts stirring up toxins & then there’s no way of getting them out of the body? Has that been your personal experience or have you seen other people talk about the same thing?
  13. Lalia

    Multiple binders

    oh nice find!! I’ll give it a go and let you know when I’m cured 😂😂😂 CDG is one of the other things my naturopath wants me to try. But I have a small overgrowth of C.Diff in my gut (1% of my gut bacteria) and calcium feeds this, so I am not so sure. When I point out contraindications to the...
  14. Lalia

    Multiple binders

    J jusr a quick one & I’ll reply properly later - S Boullardi didn’t work for me. I took a teeny tiny bit and it set off a three week flare. I was super depressed as a result too, when my body gets inflamed, I get depressed. I also got a really yeasty gross taste in my mouth. I saw a different...
  15. Lalia

    Multiple binders

    From a big picture perspective, this article from Yale looking at the mechanism behind long Covid is promising: https://yaledailynews.com/blog/2021/11/28/researchers-at-the-yale-school-of-medicine-study-the-long-term-effects-of-covid-19/ As is this (admittedly long) video with David Putrino...
  16. Lalia

    Multiple binders

    It’s interesting to hear you say you failed all the MCAS treatments that specialist gave you. I feel like MCAS is the only diagnosis medicine has to explain hypersensitivity, but like you, I don’t fit it. I failed all anti-histamines and then stopped trying to treat MCAS because I didn’t...
  17. Lalia

    Multiple binders

    Everyone’s different, and I used to think this same thing - if I could just get my immune system to calm the fuck down! But I do believe my immune system is stuck in a loop and it’s going to take more than meditation to get it working again. The treatments that make the most sense to me are...
  18. Lalia

    Multiple binders

    Yes, I met Carly a few years ago, here’s her story: https://amp.9news.com.au/article/5d4cb106-ad33-448c-863c-d478b942d704 She went to Sofia Health Clinic in the US. They did a few weeks of sauna, coffee enemas, IV glutathione, IV nutrients and IV Phosphatidylcholine. She continued w/ supps...
  19. Lalia

    Multiple binders

    I do think he personalizes each consult. There’s a lot in his book & it was helpful to get the “order” of things from him and to get his prioritization too. Yes, I have ten foods. Any meat is fine, my ME is very autoimmune in nature so I think I’ve lost oral tolerance to everything, except...
  20. Lalia

    Multiple binders

    From my notes - Nathan said the PC does two completely different things when taken liposomal vs IV. Liposomal helps with bile flow. IV helps with detoxification and healing the myelin sheaths. If you respond well to liposomal PC, it may be worth finding out if you can get the IV version. Nathan...
  21. Lalia

    Multiple binders

    Sorry about the slow reply @hb8847! Yes, I saw Dr Nathan via zoom over a two year period, on three occasions. He requires your integrative GP to attend the appointments. I found Nathan to be quite good but my GP wasn't on the ball, so it was really hard to implement the things Nathan...
  22. Lalia

    Multiple binders

    No worries at all, I do enjoy a good supplement shopping spree. Just catching up on this thread and really, really pleased to hear the PC may be helping you tolerate charcoal. Sorry for the TMI but did it change your gut symptoms or stools at all? I ask because there's a very clear correlation...
  23. Lalia

    Multiple binders

    Hey @seamyb and @hb8847 - just been reading through this thread and had some comments that may be additive. PC - when I saw Nathan he recommended it orally for help with bile flow and via IV for detoxification. He said to start off with the tiniest possible dose via IV to see if that helped...
  24. Lalia

    Dr. Neil Nathan's new book -- Toxic: Heal Your Body, from Mold Toxicity, Lyme Disease, MCAS and ...

    I agree with your comments here @seamyb. I saw Dr Nathan because of my sensitivities and he was right about my reactions to binders (I haven't made it to antifungals yet, sigh). I think the brain retraining stuff is all about preparing patients mentally. I did brain retraining and it...
  25. Lalia

    Update on Dr Jon Kaiser

    @Swim15 - who is this amazing doc???
  26. Lalia

    Anyone had luck with center for complex diseases?

    Does anyone know if CCD sees patients remotely now, post-COVID? I’m in Australia so no chance of getting to the States anytime soon.
  27. Lalia

    Copper deficiency....?

    hi @Gondwanaland - I have been searching high and low for a reason why B2 may have tipped my cu deficiency over the edge. Is this right? B2 uses up Cu to activate the other Bs? So if I’d completely depleted my copper with molybdenum and then added B2, that would explain why my Cu deficiency...
  28. Lalia

    Giving up on methylation.

    @xinamatusx if you work up the courage to try methylation again, you may be interested in the b12 oils protocol, which looks to build co-factors and B2 before finally adding B12. More information can be found by searching ‘b12 oils’ or ‘Greg Russell Jones’ on PR’s Google Site Search. He has a...
  29. Lalia

    Over the counter mold detox

    Sorry - on the list of binders it should say saccromyces boullardi and optifiber lean
  30. Lalia

    Over the counter mold detox

    @seamyb OTC mould treatments: - Binders - charcoal, bentonite clay, chlorella, NAC, saccrom - Antifungals - colloidal silver (can be used as nasal spray, Argentyn 23), nystatin Detox support - Infrared sauna (sweat it out) - Footbaths (as per @ahmo blog posts) - Castor oil packs (liver...