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

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  1. jimmy86

    One week remission with an SSRI?

    I took one Citalopram earlier today and I feel energized. If the HPA Axis theory that @nandixon describes be correct, should I just take the drug 14 days before the effects can revert??
  2. jimmy86

    Relapse or something else after viral infection?

    Hi I am a bit desperate because despite me resting my condition worsens every day, i am now at the severe end, what can I do?
  3. jimmy86

    Relapse or something else after viral infection?

    So I took 2 drinks of Whey yesterday, and one hour after the second drink most of my leg weakness and pain had disappeared. It came back this morning but I was able to do significantly more. I am sure now I have a methylation problem, and too much oxidative stress. Will add B12, Vit C and...
  4. jimmy86

    Relapse or something else after viral infection?

    That is interesting, I found this paper: "Based on a small case series (n=198) patients with COVID-19 had a noticeable increase of glutathione reductase (GR) levels occurring in around 40% of COVID-19 patients.(3)"...
  5. jimmy86

    Relapse or something else after viral infection?

    I might be able to drag myself to the doctor on Monday. But muscle twitches are not so uncommon in ME/CFS are they?
  6. jimmy86

    Relapse or something else after viral infection?

    Thanks for that! For reducing oxidative stress, would B12 and whey protein work? My doc Dr Bieger suggested to take NAD+
  7. jimmy86

    Relapse or something else after viral infection?

    I never had such weak muscles. Could it be a mild form of Guillian Barre syndrome? But I worry that this is a severe relapse 😔. I would appreciate any help how to maybe get out of this.
  8. jimmy86

    Relapse or something else after viral infection?

    So my muscle weakness is getting more and more severe every day. Almost my entire body is twitching now. However, I do not feel so much exhausted. I am still taking LDN 2.25 mg every day, wich was my sole therapy for the last 2 years. Any idea what could cause these extremely weak and burning...
  9. jimmy86

    Relapse or something else after viral infection?

    Also, SARS-CoV-2 is potentially associated with Guillain-Barré https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30109-5/fulltext
  10. jimmy86

    Relapse or something else after viral infection?

    Interesting, thank you! Will check tomorrow with my doc, maybe there are other explanations for this but I doubt it....
  11. jimmy86

    Relapse or something else after viral infection?

    Hi, I have CFS since 2008 and over the years got better and better. The last five years I worked full time, and the last two years I was even riding around town on my electric bike. Four weeks ago I got a light viral infection, a light fever, and a dry cough that persisted for more than two...
  12. jimmy86

    Moving to Brazil: Dengue, Chikunguya etc.

    Thanks, @Sushi ! It is not required, but advised, and I think it would be wise to get it. Did it make your symptoms worse for a long time? Some, even healthy people, have reactions up to a week afterwards.
  13. jimmy86

    Moving to Brazil: Dengue, Chikunguya etc.

    Hi, I planned a trip for a wedding to Brazil this summer (Rio area and Fortaleza), and just looked into travel vaccines. Should I get yellow fever and other vaccines? What's your experiences with those? Did they make your CFS worse?
  14. jimmy86

    "Exercise Tests Suggest Autoimmunity..." Cort Johnson

    Yes, there was a thread on Mestinon, which I tried myself for POTS/ME with only very mild effects. http://forums.phoenixrising.me/index.php?threads/mestinon.21483/ Definitely not a magic treatment.
  15. jimmy86

    High secretory IgA in stool

    @Marc_NL @A.B. I also got back a test with high sIgA. What did explain this in your cases?
  16. jimmy86

    Is it possible to get your life back? Has anyone here done it?

    Not really. In 8 years I saw my CFS doc 3 times. Did not have money for more visits. No fancy treatment. I guess I was lucky to be a moderate/mild case. I am not saying that this is the rule, don't get me wrong, but there is hope :) !
  17. jimmy86

    Is it possible to get your life back? Has anyone here done it?

    Absolutely possible. The first months might be very difficult, but you can get better over time. I am living an almost normal life, finished a PhD and work fulltime. No Sports, though, and occasional crashes. But overall my life is more enjoyable than that of many on this planet.
  18. jimmy86

    Have Scheibenbogen, Light, and Bergquist already cracked ME/CFS etiology?

    I heard the same. Also my German doc thinks celltrend is not reliable. I have been tested twice for these antibodies. Once by cell trend, the other by a German university hospital because of my POTS. Both times negative.
  19. jimmy86

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    Did anyone get his amino acids measured?
  20. jimmy86

    CellTrend test for ME/CFS (Prof. Dr. Carmen Scheibenbogen, University Hospital Charite Berlin, etc.)

    A word of caution: I just talked to a German doctor who had used cell trend to test his patients. Apparently, he got very different results for the same patient if they were tested multiple times. He thinks the test is crap (not testing for these auto-antibodies in general, but this specific...
  21. jimmy86

    Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?

    I started it, too. Had one big spoon yesterday and feel already better today. I had good results with other BCAA before, but at some point it seemed to stop working. Funny story, it also got me through a Japan holiday where I did up to 20,000 steps a day. Almost immediately the day after coming...
  22. jimmy86

    Autoimmune Paleo protocol

    Any long-term effects of this diet?
  23. jimmy86

    Cicero Galli Coimbra Vitamin D Protocol for Autoimmune Diseases

    did anyone try this protocol so far?
  24. jimmy86

    Armpit infection (acne inversa)

    Thanks everyone. Olive leaf and zinc are great suggestions, I will try them. Overall, this condition does not seem to be very common for people with CFS/ME....
  25. jimmy86

    Armpit infection (acne inversa)

    Hello, I recently developed an infection of my armpits, with clusters of painful abscesses. Apparently, this is a condition called Hidradenitis suppurativa or Acne inverse. Here is the Wikipedia article: https://en.wikipedia.org/wiki/Hidradenitis_suppurativa According to this, I directly...
  26. jimmy86

    Poll: Who do you believe is the most effective CFS/ME doctor?

    Yes, its Bieger from Germany. I did not vote, but I see him from time to time. While he might not conduct frontier research, he is up to date. He is also taking enough time to talk to patients and is open to different approaches. Also, seeing him and getting bloodwork done in his lab is not...
  27. jimmy86

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    I don't know whether this has already been discussed, but I recently came across this study from 1994 by Brelley and Lord: http://performancelab.fi/wp-content/uploads/2016/05/Amino-Acids_Chronic_Fatigue_1077.pdf They had amazing results with supplementing amino acids, almost 75% of the (small)...
  28. jimmy86

    LDN and Branched Chain Amino Acids (BCAA) together?

    Thank you @PatJ and @ScottTriGuy !!
  29. jimmy86

    LDN and Branched Chain Amino Acids (BCAA) together?

    Hi everyone, I am taking LDN since a couple of month (4.5mg) and I am doing quite okay on it. However, I wanted to add BCAA to help with PEM. Do you think this is a safe combination? Did anyone try it out? Thanks so much, Jim
  30. jimmy86

    Mestinon

    Does anyone else get nightmares from Mestinon?