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

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  1. Ninni

    Dec 20th: High Noon for Ampligen! FDA Advisory Committee Decides Ampligens fate in live webcast

    Yes, it´s the same for me. Really hard to follow.
  2. Ninni

    Low dose Naltrexone

    Thank you John and Sushi! I appreciate your help and advice! Glad to hear that you have had benefits with LDN! LOL, I thought about this too...How can anyone possibly survive that kind of dose...
  3. Ninni

    Low dose Naltrexone

    Thank you Sushi for the advice!
  4. Ninni

    Low dose Naltrexone

    Hi penny, sensing progress and John. Thank you so much for your responses and for sharing your experiences. The doctor prescribed 1,5 mg capsules. I opened the capsule and poured about half of the content away, so I took maybe around 0,75 mg. The doctor had told me to increase the dose to 3 mg...
  5. Ninni

    Low dose Naltrexone

    I started taking LDN yesterday evening. Even though I took a very small dose, I could not sleep at all before 5 am. And it for some reason lowered my blood pressure to 80/40. It also increased my pain. I really would like to continue, but not getting almost any sleep at all and with that blood...
  6. Ninni

    Immuno Globulin IV

    Hi Helene, I recieved IV-immunoglobulins for one year, every third week. I have progressive severe ME. Even though it did not offer any cure in my case, it definitely halted down the disease progression. The year I recieved the immunoglobulins was the only year that my illness did not get...
  7. Ninni

    3 Things that Help the Most!!

    In no particular order 1. Clonazepam 2. Bisoprolol (reduces my POTS symptoms) 3. Rest (meaning complete inactivity, lying in complete darkness and silence) If I could add a 4th thing to my list that would be intravenous immunoglobulins which temporarily halted down the disease...
  8. Ninni

    Aciclovier, would you please share your experience ?

    I got Acyclovir (Zovirax) intravenously two years ago. It was administered 3 times per day during two weeks. The side effects were quite bad, got weaker, sicker and more dizzy than before and a burning in my veins all over body. It didnt help my M.E symptoms. I dont have experience in taking it...
  9. Ninni

    Has anyone suffered a long term relapse from being on LDN?

    Im also considering trying LDN. But Im a little hesitant, since Im already severely affected by ME/cfs (wheelchair bound and 90-95% bedbound, dependent on a carer), and even a very small decline in energy and strength would make me totally bedridden. Lynn, Im wondering what kind of negative...