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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. ErdemX

    Any improvement on Tamiflu? (oseltamivir)

    Hi, do you know how long this person has to take to see improvement?
  2. ErdemX

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I have also contacted Dr. Gilette's assistant and she requested this upright MRI. When I asked, she told me this special device is not available in Spain and it exists in UK and Germany, as far as she knows. So I will be visiting London for the MRI scan and then Dr. Gilete will be looking at it...
  3. ErdemX

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @jeff_w I hope you are ok now and improving. Please let us know how you are doing when you feel ok.
  4. ErdemX

    Succinic acid studied for mito disease. Fumaric acid also

    @whatareyoulookingat How did your experiment with succinic acid go? Could you get any benefits from it?
  5. ErdemX

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

    @Silencio I have 40 sessions of experience with HBOT last year at 2.4 ATA. At that time my CFS severity was just like you. As I mentioned earlier, after a couple of sessions I was hit by a huge fatigue wave and needed to rest with zero energy all day without doing anything. But after 2-3 weeks...
  6. ErdemX

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    I have tried 600mg of oral Nicotinamide Riboside (Niagen) daily for one month with no benefit. I was thinking that Niagen is superior to NAD+, but maybe I am wrong? This is of course not the same as the IV NAD+ protocol mentioned here.
  7. ErdemX

    POLL: Which standard ME/CFS treatment protocols have you tried, and which led to major improvements?

    @zzz Thank you for sharing your experience with Valcyte. May I ask you how many years have you used Valcyte in its regular dose and did you have side effects from long term use of it?
  8. ErdemX

    POLL: Which standard ME/CFS treatment protocols have you tried, and which led to major improvements?

    I think you should still vote for Valcyte and the duration or dosage of the treatment should not be important in the poll, if a person has major or minor improvement from that treatment in any way.
  9. ErdemX

    POLL: Which standard ME/CFS treatment protocols have you tried, and which led to major improvements?

    It is also interesting to see that (so far) one of the mostly tried treatments, LDN, did not lead to a major improvement for anyone and did not help majority of patients. I've been on LDN for 2 years and had no benefit from it, now slowly tapering off.
  10. ErdemX

    St John’s Wort instead of Venlafaxine?

    I used an another SNRI (Cymbalta) for a long time and also tried St John's Wort. I think there is no way that they can work the same way. St John's Wort was a very light supplement for me, meaning I never felt something very noticeable at the start or when stopping. I had no side effects from...
  11. ErdemX

    collagen peptides

    What is the name of this peptide that helped you?
  12. ErdemX

    Transcript & audio of Nov. 28 NIH telebriefing now available

    Thank you, I was waiting for that to fully listen to Derya Unutmaz's presentation.
  13. ErdemX

    Colostrum Maf

    I have tried both injectable GcMaf (4 months) and then Oral Colostrum Maf (4-5 months) with no response.
  14. ErdemX

    OMF progress

    I think they are just amazing and I am grateful for their hard work. I believe their efforts will make a huge difference for us.
  15. ErdemX

    Arbidol; a novel Antiviral and Immunomodulator

    @Steve4Andrea Thank you for the detailed update. I'm happy to hear about the short walking outside the house. I hope your wife can start having very noticeable improvements after she passes a certain point.
  16. ErdemX

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Actually a main concern of mine is trying Rapamune before trying Rituximab, in terms of increasing the risk of PML. If I remember correctly, the PML risk of Rituximab in MS patients are higher, probably because they have been using stronger immune suppressing agents for a long time before...
  17. ErdemX

    Arbidol; a novel Antiviral and Immunomodulator

    @Steve4Andrea Any updates about using Arbidol? I hope your wife had some improvement after those worsenings..
  18. ErdemX

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

    I also had some moderate improvement in brain fog, so in general it felt like going to a better direction. But I can't say 41 sessions led to an important improvement.
  19. ErdemX

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

    I don't have autonomic dysfunction but I have a constant high level of pain, which is usually well controlled with Lyrica. So I did not have pain problem at that time. I paid 25 Euros for each session (because my condition is not covered by public insurance) with a discount. Normal price should...
  20. ErdemX

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

    I have tried HBOT in a hard chamber at 2.3 ATA for 41 sessions. After the first 2-3 sessions my fatigue got much worse, I had to rest 5-6 hours without moving and speaking after each session, it was such a crushing fatigue. During that period I could only go 3 times a week. After 3 weeks I got...
  21. ErdemX

    Is CellCept a tailor made drug for ME/CFS? (B-cells / T-cells / Coxsackie / Herpes)

    When I searched for it, I saw that this drug is widely used for Lupus and Myasthenia Gravis for many years. There are also a lot of positive reviews from patients with those or other (some very rare) autoimmune diseases. It seems like this is a widely used drug for autoimmune conditions. There...
  22. ErdemX

    Oxymatrine: What to expect with fatigue and how long? (And my on-going journey, info and questions.)

    @Diwi9 I am reading your improvement with excitement, thanks for sharing all in detail. May I ask you how long you have been ill with CFS and how was the onset, if you don't mind.
  23. ErdemX

    NT Factor any experiences?

    I tried it for long time and more than recommended dose, but unfortunately got no help for energy.
  24. ErdemX

    Confusion about ME characteristics

    I don't know where you get this information but then how do you explain that I was having flu every year a couple of times with no exception until I was 36 years old? And between 36-40, zero times. It is obvious that there is a significant change of a pattern. Meanwhile I have the fatigue...
  25. ErdemX

    Confusion about ME characteristics

    It was very hard for me to believe but I don't catch influenza type infections for 4 years, after having CFS. Before that I had influenza every year at least 2 or 3 times with no exception. The last time I had sore throat, runny nose, coughing and fever was 4 years ago and I had many people with...
  26. ErdemX

    How I found the underlying cause of my CFS--anti NMDA antibodies

    @Shawn I guess it looks perfect so far. Now will you repeat Rituximab in a similar fashion as the Norway studies? Or the doctors over there have a different pattern for your case?
  27. ErdemX

    How I found the underlying cause of my CFS--anti NMDA antibodies

    @Shawn I am glad that this time you seem to tolerate Rituximab infusion. I hope everything goes smoothly. Although I am a bit confused because I think you recently had a Bortezomib infusion. And this drug was supposed to be an alternative to Rituximab? What was the reason to get Rituximab...
  28. ErdemX

    Restless feet and Hypnic jerks

    This is one of my 99 symptoms and was very severe at the beginning of my illness. I was jumping in my bed during or just before my sleep countless times. Since I never experienced something like this before, with the other symptoms I was feeling like Regan in the Exorcist. Lyrica, which was...
  29. ErdemX

    Tocilizumab is amazing, anyone tried?

    KDM regularly does an pro-inflammatory cytokine panel, and I think he has a paper where he says IL-8 is one of the indicators of CFS. In those tests my IL-6 was usually high, but my IL-8 was sky high, like 100 times more than normal values. So, if this RA drug was targeted for IL-8, I would...
  30. ErdemX

    Feedback on my list of foods that assist M.E. recovery

    I don't think recovery with diet is possible for the big majority of us. Even a small improvement in fatigue with any diet, food, supplement or probiotic was not possible for me.