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

    To become a member, simply click the Register button at the top right.

Search results

  1. H

    it seems ron davis may have a new potential treatment

    I remember that too but I always wondered if that is the goal, why aren´t private or institunional investors financing the research and product development like in similar cases. I find it a bit odd that patients should fund research, that later on could be commercialized. Maybe I have got it...
  2. H

    Stanford researchers may have answer to why COVID patients develop 'brain fog'

    Sure, at least that is what I belive from my own and others experiences. The first time I was totally free from brain fog and all other symptoms for some hours, was after a course of Azithromycin. Later I learnt that Azithromycin is also anitviral, which might have been the reason why it helped...
  3. H

    Stanford researchers may have answer to why COVID patients develop 'brain fog'

    A study from the Sahlgren hospital in Sweden, not yet published, showed that the brain damage from Covid 19 heals in 3-6 months after the infection. It seems like the severe inflammation, not the coronavirus, is causing the damage. Professor Magnus Gisslén conducted the study, and he presented...
  4. H

    Covid, I’ve went and got it- 😞

    @Fighttolive , sorry to hear about your bad condition. I couldn´t see zinc among your supplements, maybe it has already been mentioned. Zinc is neeeded to stop the replication of the virus inside the cell. It has also been suggested that zinc deficiency could cause the loss of smell. You...
  5. H

    Could the hydroxychloroquine + zinc coronavirus antiviral combo also work for enterovirus ME/CFS?

    @Abrin , this study was retracted by the Lancet as the data were fake. There is sadly a lot of politics, or economics, in the banning of HCQ https://greatgameindia.com/gilead-death-threats-hcq/ Dr. Ian Lipkin, who also do research in ME, was given HCQ by his doctor colleague, when he was...
  6. H

    Very high TPO-Antibodies in CSF

    Hi Canned, ME-doctors use to claim that there is a higher prevalence of thyroid issues in ME-patients. You should ask for the reference ranges for the lab and your test. They differ between labs so you should have them related to your test and lab. It´s crucial to keep the numbers to be able...
  7. H

    Post Lyme Treatment with KDM

    Hi Katka, would you share a link to this? It´s really interesting.
  8. H

    Low thyroid (t3) a result of CFS? And, does supplementation help?

    I´m glad you liked the article. I thought you would, as I´ve been through all stages of treatments for my hypothyroidism. I also tried all kind of combinations of Levothyroxine, Liothyronine and Nature Throid. I´ve also been on T3-only, meaning that you only take T3. I think you are quite right...
  9. H

    Low thyroid (t3) a result of CFS? And, does supplementation help?

    @starlily88 , I´m really sorry to hear about your struggles with your thyroid and the endos you met. I´d highly recommend reading Dr. Jeffry Dach´s articles about Hashimoto´s and also the thyroid ( as well as the ones about LDN). https://jeffreydachmd.com/ Did they test if you have thyroid...
  10. H

    T4/T3 combo not found to be better than T4

    I haven´t read the article, but I suspect it was written by one of the endocrinologist who defends T4 only as a treatment for any obscure reason. Research, and experience has clearly shown that many patients have problem with converting T4 to T3 and therefore need T3 added, or Natural Dessicated...
  11. H

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

    I don´t think it would be fair to say that Rich got most of his stuff from Dr. Yasko. He clearly had studied her hypothesis and treatments but he also did a lot of his own research on methylation. Dr. Richard Deth was one of his favourites. Dr. Nathan once called Dr, Deth the dean of...
  12. H

    Can you *please* take a quick looks at my labs?! Hashi’s Flare!

    Hi ChickenBear, Some comments on your post. Sorry that you can´t get the help you´d need, even from a thyroid specialist. It´s a shame that the understanding of the thyroid is so bad, when it isn´t that difficult to learn how it all works. Dr. Jeffrey Dach has excellent articles about...
  13. H

    Adenosyl and methylcobalamin injection dosage

    To my knowledge homocystein reflects both the levels of B12, folates and B6 so there are other deficiencies that could also be a possibility. Just a thought.
  14. H

    Article about new potential treatment by Victoria Bohne, in Norwegian

    This homepage is new, I think. Maybe it replaced the information on FB . https://www.english.bohneaskoy.no/the-discovery
  15. H

    Article about new potential treatment by Victoria Bohne, in Norwegian

    As the oxalic acid is highly toxic and the dosing should be related to actual lab test results, it might well be dangerous to experiment with the ingredients. The inventor ended up on ER when she tested the treatment herself, but couldn´t get any help as they didn´t know what to do. I had a...
  16. H

    3-Iodothyronamine ( T1AM ) administered to rodents induce a hypometabolic state

    MAO SNP´s have been studied and found more frequent among PWME according to Rich Van Konynenburg, page 13 in the link below. On page 12 there are references and there are more in an article he wrote beside at that time...
  17. H

    AdB12 helps, MB12 makes me depressed and tired

    I tried to PM you, @Alenka, but I wasn´t allowed to according to a message on the screen. I guess it´s because you are a new member, so I think you have to contact a moderator that can open up for PM´s.
  18. H

    My first appointment with Dr Susan Levine

    Thanks. Best wishes with your treatment. I really hope it will make you better
  19. H

    My first appointment with Dr Susan Levine

    Thank´s for sharing. Glad that you made it all the way and I hope you won´t have too severe PEM afterwards. Would you mind telling us which amino acid supplements she suggested?
  20. H

    Article about new potential treatment by Victoria Bohne, in Norwegian

    She has ME. Maybe that´s enough as an explanation. I don´t know.
  21. H

    Article about new potential treatment by Victoria Bohne, in Norwegian

    Could it be this product, called Peptide+, described as a salmon protein product developed at Haukland hospital? https://peptid.se/om-peptid/ . I just came across an advertisement after having read your post today. I hope I didn´t get it all wrong. Maybe we could get some help from a Norwegian...
  22. H

    HPV vaccine

    Hi @Thinktank , Yes, I´ve been contacted by two mothers of daughters who got the vaccine and not long afterwards developed ME. I think there was a clear connection, although the girls probably have a susceptability to develop ME. They had some other of the factors that we often see, like family...
  23. H

    4ME - pain after application

    Hi @MartinK , I think you should contact the clinic and KDM. You will surely get a message about how to handle the situation. Best of luck!
  24. H

    Now very severe HELP

    It could be due to low potassium, and if so it may get severe but don´t supplement potassium without being told to by a doctor. I hesitated to post, but I just feel I must say I´m worried as Martin is in such a bad condition. I was in medicine before. You, Michael, are doing a great job by...
  25. H

    4ME from Kalidashop - yes or not - maybe we have same product in Czech!

    @MartinK , I would send an e-mail to Himmunitas and ask the staff to get it forwarded to Prof. De Meirleir. He would surely answer your question. He is well aware of most patients difficult economic situation.
  26. H

    ME/CFS is a mast cell disorder (hypothesis)

    @justy , did you have any gene test including the ones in the P450 systeme (sometimes called detox genes)? A 23andme test covers many of them? Maybe you already are aware of the following... Here you can check the drugs you have reacted to, maybe caused by accumulation of the active substance...
  27. H

    Autoimmune testing

    I agree from what I learnt from other people who made some changes in their diet and the antibodies couldn´t be measured any more. They all quit gluten that is suppposed to cause strong autoimmune reactions in some people. Dr. Jeffrey Dach has written some really good articles on Hashimoto´s (...
  28. H

    Nails.

    Untreated hypothyroidism with slow metabolism causes nails to grow slowly, and might be the cause. As a first step you could check your body temperature first thing in the morning and your pulse. A lowered temperature, and slower pulse than before, could be signs of hypothyroidism. This site...
  29. H

    Kenny De Meirleir treatment

    He is definitey a person who carefully listens to you, and recommends tests and treatments based on that. I would suggest that you write down your questions before the appointment, and I´m sure you´ll get replies. I would wait with the questions until he has finished talking.