• 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.

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Search results

  1. J

    On-going supplement poll

    I only tried the pill form of B12 but my doctor really wanted me to try the injectables instead. It seemed to give me energy... for about an hour and then I went back to my exhausted, worn-out self. Pretty sure I have mitochondrial dysfunction but also I think a lot of people with CFS have that too.
  2. J

    Why do I tell the truth?

    I feel like family, friends, and even doctors or medical professionals don't really understand ME/CFS today and there's lot of ignorance of the condition and misdiagnosing people with depression when they really have ME/CFS. Trust me, I tried anti-depressants, multivitamins, CBT, exercise, and...
  3. J

    On-going supplement poll

    I've tried a bunch of different supplements for my cfs including multivitamin, methyl folate/b12, carnitine, activated charcoal, d ribose, nadh, probiotics, vit d, co q 10 etc, etc. Some of these supplements have only been able to help a little but the effect didn't last long. Like for...
  4. J

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

    Before I started on LDN, I had all the immunologic tests done-- lymphocyte subset panel 1, immunoglobulins, Nk cell function, immune cell function, CBC. Everything came back within normal range except NK Cell function which came back too low for the lab to measure it. (probably at 0 LU, they...
  5. J

    Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

    You are very welcome. I am going to try either Hypothalamus/Pituitary Glandular for the HPA Axis Dysfunction or possibly Cortef for my cfs. Thanks!
  6. J

    Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

    Hypothalamic dysfunction can cause Chronic Fatigue Syndrome http://www.news-medical.net/news/20091024/Hypothalamic-dysfunction-can-cause-Chronic-Fatigue-Syndrome.aspx "Although many stresses, including numerous infections, can trigger CFS, Dr. Teitelbaum (a prominent ME/CFS doctor) identifies...
  7. J

    Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

    Well, what about that patient with severe CFS who was in a wheel chair for 13 years (Mr. C)? Modafinil has helped him with the fatigue and it can help others too, although I'm not saying it's a cure. It helps some people, maybe not others. Look at these reviews. Modafinil for Chronic Fatigue...
  8. J

    Adrenal Panel Results

    Hello Arminta7, I found this article right here about the safe use of Hydrocortisone. I think it may prove helpful to you. http://drmyhill.co.uk/wiki/Hydrocortisone_-_how_to_use_it_safely_and_without_causing_adrenal_suppression Basically it says 5-10mg is safe, with few side effects and it...
  9. J

    Responding poorly to cortisol therapy/hydrocortisone

    Always listen to your body. If you're having these adverse symptoms then you definitely don't want to keep increasing the dose. http://drmyhill.co.uk/wiki/Hydrocortisone_-_how_to_use_it_safely_and_without_causing_adrenal_suppression In the above article, it says in order to use hydrocortisone...
  10. J

    Progressive M.E.

    My ME/CFS seemed to be getting progressively worse over the years and fatigue kept getting more and more debilitating and extreme, but then I discovered LDN and got my doctor to write a script for it. I've only been on it for a few months but it seems like my CFS has improved a little (as...
  11. J

    Poll on Immunoglobulin antibodies - Please respond if you've been tested!

    I've had all the immunologic tests done. So far, everything comes back normal except NK cell function which came back alarmingly low at 0 Lytic Units. But I am using LDN and it is slowly but surely improving. It's all the way up to 23 right now.
  12. J

    Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

    Hip, this is a very, very good and informative list. I have read through it several times and I find it very helpful. However, I would like to add a few more things that may be helpful. Modafinil “aka Provigil” has been shown to help treat Chronic Fatigue Syndrome...