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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. Lolinda

    Increasing mitochondrial energy production using 4 labtests, by Chris Masterjohn - I got out of ME and resolved low ATP

    Hi everybody! I am happy to see all your participation in this thread! Let's create something practically useful for all: I suggest to collect a list of laboratories all over the world. So far I know: LAB LIST (Labs that test for all 4 markers: lactate, pyruvate, beta hydroxybutyrate...
  2. Lolinda

    Scientific method to measure stomach acid at home (who would help validate it for the ketogenic diet?)

    In my following post you find all details how to use simple urinary pH stripes for finding out at home if you have enough stomach acid: https://forums.phoenixrising.me/threads/dealing-with-low-stomach-acid.45191/page-2#post-746862 No, you do not put anything into your stomach, but you measure...
  3. Lolinda

    Increasing mitochondrial energy production using 4 labtests, by Chris Masterjohn - I got out of ME and resolved low ATP

    that would be cool: solving all problems by simply taking a multivitamin :thumbsup::D:angel:. I like your comment a lot, because 1. It is cool just like your avatar photo weightlifting the cat :cat::heart: and 2. it gives good opportunity to explain important things. The short answer: YES, I...
  4. Lolinda

    Increasing mitochondrial energy production using 4 labtests, by Chris Masterjohn - I got out of ME and resolved low ATP

    A PhD's Secret Weapon: The Four Biomarkers Every Expert Should, But Doesn’t, Analyze text version: https://chrismasterjohnphd.substack.com/p/how-to-interpret-ketone-ratios-and Chris Masterjohn presents in this video / article that one needs to measure two ratios: lactate : pyruvate beta...
  5. Lolinda

    NASA 10-minute lean test: Testing for orthostatic intolerance (OI) in ME/CFS patients (video)

    The problem with the paper you have found is that it does not feature at all the NASA test. Patients are not required to reduce water and salt intake for 2 days. also they do not lean against the wall but stand. Free standing activates the muscles more. The smartness of the NASA test is to...
  6. Lolinda

    NASA 10-minute lean test: Testing for orthostatic intolerance (OI) in ME/CFS patients (video)

    Who could go to an academic library and get the following 1975 paper? it's impossible to get it online and It is not available at my university. If we have a copy, reading science is my job and I am happy to do an interpretation. Aviat Space Environ Med . 1975 Jun;46(6):801-8. Comparison of 70...
  7. Lolinda

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    Hey Cort, I am happy you are back! your return is the best thing that could have happened to PR :-)
  8. Lolinda

    Anyone got tips on how to calm down heart palpitations quickly (POTS) ?

    What helps me is 5-2-5 breathing. it's as simple as it gets and doesn't need any experience with yoga or anything else. basic technique: just breathe in white counting five, hold breath while counting two, then breathe out while counting five. Then continue by repeating this cycle. (So, when...
  9. Lolinda

    Anyone resolved blood pooling?

    I did try IVIG for my POTS in spite of testing negative for adrenergic antibodies (test panel offered by celltrend lab, Germany). The result was zero in spite of receiving these super expensive infusions over more than half a year. I did not feel better and I performed the 15 min standing test...
  10. Lolinda

    An attempt to explain the neurological symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2021, Wirth et al)

    hi guys, I see (and appreciate a lot) that you are discussing in this thread among others: lack of brain epi/norepinephrine, adrenergic antibodies and PEM. just in case anybody is interested in solutions, for me the following things have worked: vitamin D has resolved high adenergic antibodies...
  11. Lolinda

    France: ME/CFS in France

    https://pubmed.ncbi.nlm.nih.gov/35690118/ "indicating the ability of niacin to restore the BBB integrity" here I describe my experiences how I got into PEM and how I got out of it...
  12. Lolinda

    France: ME/CFS in France

    I am very interested in your experiences with the French CFS association and the French millions missing: - are there many members in that French CFS association who discuss things online as we do? - have you ever met the people in real life, in either of these organizations? I would be so...
  13. Lolinda

    France: ME/CFS in France

    Hi @Pyrrhus , this is super beautiful. do you know the one who sings in this video? I have seen on youtube that her name is Claire. is she here on PR? :)
  14. Lolinda

    France: ME/CFS in France

    Resolving that pallor made my PEM go away: Hi @perrier, thoughtful comment! it reminds me of my own story: while I had to take several steps to leave a fullblown diagnosed ME behind, specifically overcomming PEM was due to eliminating that pallor: I knew that B3 gives rosy cheeks. mine were...
  15. Lolinda

    Chronic fatigue syndrome patients have alterations in their oral microbiome composition (PLoS ONE)

    does anyone know where to get a good oral microbiome test? I would be happy to do one! (PS: of course the question discussed above if microbiome changes are cause order consequence is an interesting one, but I am a simple minded person and for me the more important question is always plain...
  16. Lolinda

    B2 I love you!

    I am very curious what has happened!! :thumbsup::thumbsup::thumbsup::thumbsup: I absolutely love the taste of liver, which many people hate, and recommend it to family & friends for the vitamin contents. if people only knew that we were eating liver, brain and bone marrow for the last hundred...
  17. Lolinda

    B2 I love you!

    I can vouch for this. in case you want to know, here is my story how I learned it the hard way: when I took vitamin B1, I got a huge neuropathy attack. when I tried then very carefully other B vitamins (transdermally - which makes only a very small part absorb), I got small issues, that still...
  18. Lolinda

    Adrenal crisis caused by covid vaccine - new research

    Hi everybody!! I am happy to see all your responses to this thread that I started some weeks ago! I wish to ask you what are good forums / discussion groups for cortisol deficiency? let that be here on PR or anywhere on the entire internet. Thanks!!
  19. Lolinda

    Adrenal crisis caused by covid vaccine - new research

    having small issues with cortisol deficiency, I looked into research if vaccines are safe with this condition. I found these two very recent publications. I am happy that research has started on this. 5 cases who had actual or incipient adrenal crises requiring parenteral hydrocortisone ...
  20. Lolinda

    I can't eat protein

    thanks a lot @PatJ @Mary @BeADocToGoTo1 and @Folk I am on a ton of betaine HCL too... do you know by any chance how to recover own HCL production? and what were your experiences with interfase Plus? how long, how much, with which results? I am starting right now. one interesting thing I noticed...
  21. Lolinda

    Does Palmitoylethanolamid (PEA) works transdermally?

    in order to make my cannabinoid receptors happy, I simply smeared lecithin on skin. it contains phosphatidyl ethanolamine, which triggers cannabinoid receptors. (But I can't vouch for pain for the simple reason that I didn't have any to begin with. but cannabinoid receptors are important also...
  22. Lolinda

    PEM post-exertional malaise resolved. Steps: low-carb paleo, eliminate offending foods, breathing, transdermal B3, the best: CARNITINE

    Hey @Grigor @YippeeKi YOW !! and everybody else: cheers! :) I will be back to this thread as soon as possible, promised! Maybe a week or rather two. I have a ton of doctors appointments to address my last issues and if I don't prepare what I want from them then its all in vain. (or in other...
  23. Lolinda

    PEM post-exertional malaise resolved. Steps: low-carb paleo, eliminate offending foods, breathing, transdermal B3, the best: CARNITINE

    Hi, I am overly happy. No more PEM, after some years of pacing and suffering and working on improving it. I cry happy tears while writing these lines... I wish you so much the same, so I write down all details. I hope you can take this or that idea and profit. Having said that, I always noticed...
  24. Lolinda

    I get chills for 2 weeks after a single attempt of killing gut microbes; permanent cure found: cod liver/oil or sashimi. See last post.

    Permanent cure for my chills (chills = cold in the torso with flu-like feeling) This is my update after some years of not having had any chills: I have cured the chills taking cod liver oil. First a small dose to get used to it, then the effect came when I increased the dose to 12g per day...
  25. Lolinda

    What changes did you notice during recovery from a diagnosed carnitine deficiency?

    Meanwhile I am confident that a wonder has happened: thanks to carnitine, I can do some moderate force training again. Ever since I am sick, force training led to a flu-like feeling in me, and sometimes it made me suffer for weeks. Example: I did 10 pushups and I was sick "with a flu that is not...
  26. Lolinda

    Losing Progress, Looking for Next Step

    First of all, thanks for all your educated posts!! It seems to me that you may have read tons of research. Do you have by any chance research on creatine speeding up digestion? Or, if your source is your own experience, would you tell details about that? Not that I am in need to speed up my...
  27. Lolinda

    Acetyl l carnitine

    Hey guys, why do you not measure serum carnitine levels? They are well measurable, the tests are accessible in any Western country having proper medicine, and not expensive (There are rare exceptions when the measurements are not valid: in exceptional cases, muscle or neuronal carnitine can be...
  28. Lolinda

    What changes did you notice during recovery from a diagnosed carnitine deficiency?

    Here is my story: Labs: I had a longstanding carnitine deficiency, as bad as this: total carnitine: 16 µmol/L (29-70) free carnitine: 6 µmol/L (18-48) acylcarnitines: 10 µmol/L (7-26) acylcarnitines/free carnitine ratio: 1.67 mol:mol (<0.50) I repeated these measurements many times and had...
  29. Lolinda

    What changes did you notice during recovery from a diagnosed carnitine deficiency?

    Please please please share your story here of what happened after you replenished a diagnosed carnitine deficiency! It would help me to estimate what of the many changes in life I experience actually come from carnitine and what things get worse before they get better. Where to be patient, when...
  30. Lolinda

    Why Is Music So Hard for People With ME/CFS?

    A new thread attempting to solve the problem and enable sensitive people to listen to music: Many people with CFS/ME find music too stimulating. This thread is to collect beautiful music beneficial for health and not triggering overstimulation