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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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Search results

  1. Alenka

    Viral reactivation on antivirals

    Could you please email the invite to me too?
  2. Alenka

    lasting worsening after immunoglobulines (gammanorm)

    Thank you very much for your reply! I made the same mistake when chelating which is what triggered my CFS. Paid a high price for not listening to my body!
  3. Alenka

    lasting worsening after immunoglobulines (gammanorm)

    @aurel Are you feeling any better now? I have just received Gammanorm prescription from KDM today (on my request) and now I'm scared to try it.
  4. Alenka

    Berlin Cures BC007 - anyone here volunteered for the trial?

    I have applied for a study at the Charite CFS Clinic. I don't know if it is for BC007. Do you perhaps have a link?
  5. Alenka

    Sources for BH4?

    They are asking for a prescription or a drug licence. How can I get one?
  6. Alenka

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

    I have tried NAD+ from ABN and this is the first thing that has given me more energy and I have tried numerous supplements! I would now like to try IVs and would be extremely grateful if you could post further details of your protocol, including quantities. I'm from Slovenia and bedridden and...
  7. Alenka

    Andrew Cutler and Alpha Lipoic Acid

    Many thanks for your interest Hip. I did the Doctor's Data test before starting the chelation. No heavy metals in high amount but I did meet Andy's rule indicating deranged transport of minerals. I'm certain I have mercury in my brain because three times I accidentally took a huge amount of ALA...
  8. Alenka

    Andrew Cutler and Alpha Lipoic Acid

    I would like to write about my experience in Cutler's FB group but I don't have the strength to face the backlash.
  9. Alenka

    Andrew Cutler and Alpha Lipoic Acid

    Followed instructions to the dot. Had blind faith in Cutler that's why I pursued even when my body screamed no. I started with DMSA and switched to ALA three months after amalgam removal. Started with a 12.5mg ALA round but it made me very tired. Kept reducing to 250mcg ALA, with long breaks in...
  10. Alenka

    Andrew Cutler and Alpha Lipoic Acid

    Cutler's chelation protocol triggered my ME CFS. I kept chelating despite feeling worse because I thought I was in the "dump" phase and needed to push through. Before Cutler I ran half marathons, now I'm bedridden.
  11. Alenka

    Experiences with DMARDS/corticosteroids?

    Could you please explain why?
  12. Alenka

    Neurologic Abnormalities in M,E, A Review Komaroff et al

    I was. Doc put me on HC and I've just done a MRI scan for a possible pituitary tumor. I don't think they'll find anything. Funny enough I'd prefer to have a tumor rather than stay with my ME CFS diagnosis. Or perhaps I have both! We'll see in a week's time
  13. Alenka

    My first appointment with Dr Susan Levine

    This is really kind of you, thank you very very much! My son is 22 and has repeating throat and UTI infections ever since he contracted EBV at age 16. I am 46 and since amalgam removal 3 years ago I spend 80% of my time in bed due to CFS. Both my son and I tested positive for mineral transport...
  14. Alenka

    My first appointment with Dr Susan Levine

    @jpcv Thank you very much for posting about your experience. I really hope you will see an improvement in your condition. Encouraged by your post I called Dr Levine's office today to ask for an appointment for myself and my son. We would also travel long distance (Slovenia). However I was...
  15. Alenka

    AdB12 helps, MB12 makes me depressed and tired

    Please help me. I started freddd's protocol 3 months ago. AdB12 was a real discovery. I started with 20mg daily (not knowing about freddd yet) and I thought my CFS was gone and life returned. After 3 days I fell back to Earth as AdB12 only gave me a temporary increase in energy. I settled for...