• 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. enna

    Elevated uric acid

    Hi Space8 I do also have elevated uric acid. I am female, I am under 40, eat meat less than once in a month, can't drink alcohol for over 15 years und can't eat legumes (SIBO). For many years have gout-like pain in my joints that comes and goes. Since I was a child I could never tolerate much...
  2. enna

    Is insulin resistance the cause of fibromyalgia? In a subset of fibromyalgia patients, metformin dramatically improved pain

    Metformin and caloric restriction induce an AMPK-dependent restoration of mitochondrial dysfunction in fibroblasts from Fibromyalgia patients: https://www.ncbi.nlm.nih.gov/pubmed/25779083
  3. enna

    My success story. Tons of biotin.

    Did you start to see an improvement of your symptoms from the beginning of the supplementation? Did you "only" had a cognitive fatigue or in the whole body (muscles)? I have a deficiency but did not recognice a improvemnt with 10mg a day... I think of trying your protocol, but it is very...
  4. enna

    Approaches to treating D-Lactic Acidosis

    Hi I have elevated d-lactate (only tested in the urine). I am in a very bad state, I can't read much (understanding even worse) ... I tried Metformin. Not much for some days, felt normal. Then I had a MRT with a contrast-liqid. I crashed like never before, with additional symptoms I never new...
  5. enna

    My success story. Tons of biotin.

    I had a biotin deficiency (messured in the blood) and tried to supplement (5000mcg) a day for a month, but did not recognice a difference. Maybe I will make an other try with sublingual...I am very curious about new infos @mariovitali!
  6. enna

    Twitter campain - #MEperspective - please take part

    hey Joh! I did not forget you, but I am very unwell and I want to give you a proper answer... But I need some time to do it. My concentration is very very bad never can think clear. Most things on Twitter has to do my patner. I only have diffuse ideas, which de does concretise. You found the...
  7. enna

    Twitter campain - #MEperspective - please take part

    Hey @Joh! You made me emotional again! I am normally not the very emotional type... I don't know what to say... No one in my family and none of my friends realise even little what I am going trough... But that's also part of the problem, that in Switzerland there is only CFS known (the...
  8. enna

    Twitter campain - #MEperspective - please take part

    @Joh wow... Berlin... ist sehr schön! Ich musst ein Bisschen weinen, als ich deinen Beitrag gelesen habe. I am so sorry for you, that you had go give up your life... If I hadn't my partner, I wouldn't know who cared for me and where I would live... I contacted MEAction yesterday on FB, but they...
  9. enna

    Twitter campain - #MEperspective - please take part

    Hey @Joh ! Thats it! not even ME unspecific medical help: sleep med, pain meds or antiinflamatory (I am having a high sedimentation rate for years). its frightening! I have shared the campagne on the MEAction facebook page, but its not really visible there... Nice greatings to Germany from...
  10. enna

    Twitter campain - #MEperspective - please take part

    My love made a homepage for the #MEperspective. Any inputs or photos are very welcome. There is also a link for donation (open medicine fundation)...its so hard... what can we do to be heard... I am 15 years without medical help at all. In my country there is not one Doctor who is treating ME or...
  11. enna

    Vascular Brain Fog & Nitric Oxide

    Hi @viggster Do you still take the insuline and does it still work? I suffer from very bad brain fog and kognitive impairment, so I'm very eager to try the intranasal insulin. Unfortunately where I live it is impossible to get it without prescription, which you will only get if you are a...
  12. enna

    Twitter campain - #MEperspective - please take part

    done:
  13. enna

    Twitter campain - #MEperspective - please take part

    I thougt of the same! i will post this on twitter!
  14. enna

    Twitter campain - #MEperspective - please take part

    Meanwhile I think I probably made a mistake choosing this picture, as it not showing my everyday reality. It is normal to have a much more chaotic and pragmatic room with this illness. Mine is idializing, but thats because the visual thing was always been central for me as an artist. But its not...
  15. enna

    Twitter campain - #MEperspective - please take part

    No, you would come to the reality of ME live. I luckely have my partner caring for me, but it really doesn't always look like that! Before I became so ill I was an artist, and this wall is a relict of a better time. But with ME we can't really choose our perspectives! I would like to show all...
  16. enna

    Twitter campain - #MEperspective - please take part

    Hi @boombachi Whoever wants to join but doesn't have twitter can post the picture here and write a short sentence (max. 100 characters ) to it. I will post it on the Twitter site with your first name.
  17. enna

    Twitter campain - #MEperspective - please take part

    Hi everyone I am suffering from ME for 15 years and am mostly bedbound for a long time. Before I was an artist, but I can’t do artistic work anymore. Making art was the center of my life beside going to the nature. Now I had an idea for a Twitter campaign for ME, which I started and would be...
  18. enna

    Free blood gases analysis [Netherlands]

    I've read the study. It's a great piece of research but I did'nt understand the part about elevating the CO2 while hyperventilating. Do you have a clue why this is so? There was a study of fibromyalgia patients where a part (I think 30%) of the patients had this. I always wondered how close...
  19. enna

    Free blood gases analysis [Netherlands]

    Hi Emootje You know very much! Thank you for the hint with the benfothiamin. I tried thiamine a year ago for two weeks up to 1500md/day, but I felt bad when I took it, especially when I took the high doses, so I stopped. I took benfothiamon in a lower dose sometimes, but I didn't feel any...
  20. enna

    Free blood gases analysis [Netherlands]

    Thanks for the infos @Emootje . I've read, that negative base excess combined with elevated anion gap indicates additon of acid like in a keto or lactic acidosis (en.wikipedia.org/wiki/Base_excess). It is really hard to understand what was going on there. If never felt so bad in my entire life...
  21. enna

    Free blood gases analysis [Netherlands]

    Hi @Emootje Thank you very much for your answer. Now I understand more but at the same time less. When the high anion gap and the high D-lactate as well as the negative base excess indicate an acidosis, how can i have a alkalosis at the same time? Is it possible that somehow my breathing...
  22. enna

    Free blood gases analysis [Netherlands]

    Hi @Emootje Maybe you are interested in my blood gas values. I tried to research about them, but I'm very cognitively impaired so it ist very hard. I had a very severe reaction to metformin too (maybe interesting for @Valentijn ). It was in early April and I had very bad air hunger, a heart...
  23. enna

    Looking for help in interpreting lab results

    Hi @undiagnosed I think it is a great idea to share data to help diagnoses. Thanks for your work and good luck with your project! Hi @Joh I think it is very bad and i'm even legally obliged to pay about € 400.- per month for the insurance without getting anything in return. I don't want to...
  24. enna

    Looking for help in interpreting lab results

    Hy everyone! I’ve been a reader in the forum for many years, but this is the first time I write my own message. English is not my native language so excuse any mistakes. I’m a 30 year female and I’ve probably had ME since I was 15 with a strongly progressive course. I’ve tried to live on my...