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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. Hanna

    Anyone know of any negative experiences with Choline ...?

    From Wikipedia : Choline can antagonize dopamine directly or interfere with receptor function I found this interesting. A few minutes ago I was searching a list of dopamine blockers and depletors drugs to verify if a drug that I have to begin tonight is NOT among them. Those may result in...
  2. Hanna

    earworm torment (a.k.a. auditory imagery loop)

    I have been suffering also from this "broken record symptom" for years. It comes and go and I can't explain the reason why. I have been stucked with a brazilian song now for more than 2 weeks, day and night. It is a nightmare and I don't know what to do to alleviate the problem. Took Magnesium...
  3. Hanna

    General Anesthesia & Sensitivity to Medications

    A Rare Case of Propofol-Induced Acute Liver Failure and Literature Review G. Kneiseler,a H.S. Bachmann,b L.P. Bechmann,a A. Dechene,a T. Heyer,e H. Baba,c F. Saner,d C. Jochum,a G. Gerken,a and A. Canbaya,* Author information ► Copyright and License information ► This article has been cited by...
  4. Hanna

    General Anesthesia & Sensitivity to Medications

    I had a general anaesthesia in 2002 and my heart reacted so badly to it that I was 1 month in cardio rehabilitation. Name of the stuff was PROPOFOL. I learnt later that propofol is toxic to mitochondria, so beware.
  5. Hanna

    Potential Suramin Alternatives - Sytrinol and Kudzu (Anti Purinergic Therapy)

    Kudzu is one of the three plants that herbalist Buhner proposes for treating acute symptoms of "neuro-lyme" (and co-infections like Bartonella) - described as a sort of brain inflammation . He uses the root only. His average dose is 1/4 teaspoon of tincture (1:5 I presume but this need some...
  6. Hanna

    High dose vitamin B1 (thiamine)

    B6 plays a role in oxalate metabolism by converting glyoxalates into glycine, isn't it ? So it is a way to prevent more endo-production of oxalates.
  7. Hanna

    Driving with ME/CFS

    I had to give up driving as it was way too much stimulations for me, could not react with enough calm. On top of this I could not any more evaluate depth and driving became too frightening and not secure.
  8. Hanna

    supplement recommendations?

    @outdamnspot when I wake up at night I take the Lypricel GSH and it helps me to sleep again rather quickly, otherwise I am generally staying awake 3-4 hours before having chance sleeping againm if any. I imagine it is wiping out toxins that accumulate in brain that are fueling the...
  9. Hanna

    supplement recommendations?

    @PatJ I would like to know if you have tested Lypricel GSH (in place of Terry Naturally). This is the one I have been taking for 2 years (it is liposomal form) and I love it. But even more expensive than the Terry one. If you tried both, could you precise where goes your preference and why...
  10. Hanna

    REFEEDING SYNDROME - The clues to healing via induced deficiencies

    @Kathevans I am also on 150 mg allithiamin and suffer from those calf pains too though I am supplementing in magnesium and B2 in addition to my B-complex. Before introducing the allithiamine I didn't have this issue (I take benfothiamin 100 mg/day in a B-complex). Do you link this pain to some...
  11. Hanna

    weather change

    Cold and damp is the worst combination for me. The very first days when the weather is changing (from summer to fall) I am also experimenting major emotional stress - on top of the physical pain increase. Just now in fact !
  12. Hanna

    Is absorption of transdermal thiamine comparable to injection?

    @tango, you have now on iherb allithiamine from the same producter as lipothiamine (cardiovascular research group/ecological formulas) and on the contrary to lipothiamine which includes ALA, there is no ALA. See from iherb site : Amount Per Serving %Daily Value* Thiamine (TTFD) (as thiamin...
  13. Hanna

    Baicalin: anyone have experience using?

    I used Chinese Skullcap for a while (a few months) and it seems it calmed down some racing thoughts I had, even at nights. But this was part of my routine for Lyme co-infections and not for a viral purpose.
  14. Hanna

    Not all steps are "created" equal !

    I realise that I have underestimated the overstimulation part of our disease as I am living 95% of the time alone, stucked at home for a looooong time now (no TV, minimal radio, just a little bit of computer). And it seems that proprioceptive skills are a BIG drainer of energy as well as other...
  15. Hanna

    Not all steps are "created" equal !

    If I am indoors but not at home, I have indeed to cling to the walls, as you describe @Mithriel, wide legged stance and arms out for balance. And outdoors, same thing if there are some movements around me (it disturbs my equilibrium). And if everything is quiet, just this weird thing about the...
  16. Hanna

    The unconscious part of the brain

    I experiment also big difference between walking in my yard (1800 steps) and trying to walk outside. Generally after less than 60 steps I begin to collapse (quadriceps tighten to the maximum) and have to find urgently a place to sit. I opened a thread about this phenomenon a few days ago called...
  17. Hanna

    Not all steps are "created" equal !

    Hi, On good days, I can walk 30 mn twice a day. That makes for me 3600 steps each time.BUT... Those are steps in my little garden, or park, on the grass without people around, no noise or any disturbances from the city life. This day, I woke up with good parameters - thought it was a good day-...
  18. Hanna

    Poll: Has an immunosuppressive dose of Prednisone helped you in the short term?

    I was in hospital for an allergic reaction to bee sting for 4 days and was given prednisone. I didn't expect to notice my POTS symptoms greatly diminished and I had a lot more energy. I don't remember exactly the dose but it was clearly 40 mg or more aday, as I was told to tapper down slowly to...
  19. Hanna

    Climate Change - increased CO2 impact on nutrients

    Thanks a lot @Learner1 ! This is so interesting (and worrying also). If we add to that the quality of the water we drink and we use for agriculture - in Israel the majority of the supply comes from desalinated water which also seems to affect the mineral content of food- we are preparing to...
  20. Hanna

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Thanks a lot @Learner1 , I am going to "dive" in the stuff you posted :). Anyone tried both and could give some their impression ?
  21. Hanna

    Berberine is toxic to the miotochondria

    Burbur from Nutramedix is Desmodium molliculum. Used for detox in Cowden's protocole for Lyme disease.
  22. Hanna

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    I am going to ask certainly a silly question here : has ozone therapy comparative positive effects on ME/CFS than HBOT ? (though HBOT use for fibro study comes from Israel, there is very little chance to get this therapy here).
  23. Hanna

    glyphosate toxicity cure

    @may2 could you provide a link to the product you are using for glyphosate detox ? I would like dig deeper. I have suffered several years of severe IBS before getting hitten by ME/CFS. This began right after one month working as a volunteer in a kibbutz (cotton fields) and beeing "flooded "...
  24. Hanna

    Significant Improvement Story -- Focus on Thiamine Deficiency

    The OAT (organic acids test I think) test from Great Plains Laboratory gives you a fair indication of your oxalate status if it is elevated (a low number does not according to Susan Owens) https://www.greatplainslaboratory.com/gpl-blog-source/2016/8/8/oxalates I would have liked some other way...
  25. Hanna

    Significant Improvement Story -- Focus on Thiamine Deficiency

    Yes you are right @pattismith I have to check the hyperuricemia (though I eat low animal source protein). Rheumatic diseases were ruled out several years ago by antibody testing. I tend to think that it may be an oxalate issue, since I have introduced lately magnesium bisglycinate 2/day instead...
  26. Hanna

    Significant Improvement Story -- Focus on Thiamine Deficiency

    Thanks @NotThisGuy No it isn't. There is no special visual aspect excepting that the finger looks a bit swollen. But each try to bend it gives huge pain inside of the first joint.
  27. Hanna

    Significant Improvement Story -- Focus on Thiamine Deficiency

    One more question : something weird began on friday, I have very accute pain in right finger - inside the first articulation. The finger is slightly inflated but not red. Could it be some gout or oxalate crystals symptom and may it be linked to B1 supplementation? I have never had such thing.
  28. Hanna

    samento anyone tried it for M.E.?

    I took Samento 2 years as a part of a simplified Nutramedix protocole for Lyme (cf Dr Cowden)... not for ME. But as I have also ME I didn't see any positive change in my symptoms like exhaustion, PEM. When using it, it is advised to ramp-up the dose (1 additionnal drop each time).
  29. Hanna

    Anyone else used an infrared portable sauna?

    Dr Wilson also advises against FIR saunas because of the radiation problem. On his site there is also a plan how to build a Near infra Red sauna. drlwilson.com/ARTICLES/SAUNAS-NEAR%20VS.%20FAR%20I.htm www.infrared-light-therapy.com/build-your-own-infrared-sauna
  30. Hanna

    First try at Active Protocol and have questions.

    I feel concern with one point in this chart. On the right side (thiamin interference factors) I see that thiamin absorption would be disturbed by thiaminase from polyphenols like resveratrol. As I have been taking lyme herbs like Japanese Knotweed for 2 years now (after ABX b1 antagonist like...