• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. jodiesattva

    Low-dose naltrexone (LDN) - how's it working for you?

    I've been taking LDN for almost 2 months, and just increased to 3mg. My sleep is marginally better, but that's the only improvement. I have a lot of pain and am getting no relief. It's possible I have a bit more energy, but I also started on a tiny dose of NDT a month ago, so that might be...
  2. jodiesattva

    Questions about Mestinon, Midodrine, and Florinef

    @RebeccaRe I'm so excited to read your post. I'm seeing Dr. Systrom in March, so I suspect he will try me on Mestinon. Maybe we could direct message (I'm not sure what to expect with the upcoming appointment)?
  3. jodiesattva

    Neck weakness/shakiness/contracting?

    I doubt it since I can move my neck forward/backward all the way (hurts, though) and that's like the first thing doctor asks. But I will look into it. Edit: was thinking of bacterial. Yeah I guess I need to look into this.
  4. jodiesattva

    Neck weakness/shakiness/contracting?

    I have had ME/fibro for almost 5 years now. Sometime this summer my neck started to feel like it couldn't hold my head. If I sat upright for more than an hour, it hurt a lot. Then, about 3 months ago i caught a cold. The runny nose never went away, and my neck symptoms got worse. What's more, it...
  5. jodiesattva

    Which doctor is right about chronic EBV?

    If these antivirals inhibit mitochondrial function, but could potentially help clear up the hidden EBV infection, which is the lesser evil? Or is there an alternative? Are the herbal antivirals effective and safe for the mitochondria? And if so, which are the ones to go for?
  6. jodiesattva

    Active EBV?

    @Learner1 I just read that mini roadmap... Today I was going through all my lab results (looking for iron tests because I couldn't find any since 2014), and I decided to plot my EBV titers on a chart because I'm a nerd. I also plotted some other stuff that's been bothering me, but that's...
  7. jodiesattva

    Niacin for sleep

    @Mary I came to the sleep discussion and who did I find??? LOL. I'm interested in niacin now, but I'm curious what you say about slowing down methylation. What if you have a methylation genetic defect? I have the heterozygous MTHFR defect, so would slowing down methylation cause problems for me...
  8. jodiesattva

    Positive EBV Test - Possible Lyme?

    I have the same EBV results as you and I've had them for years, which aren't supposed to be possible and most doctors are very dismissive about it. I've "had mono" i.e. tested positive for the active infection at least 3 times in my life, which is also not supposed to be possible. But listen to...