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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. Louie

    High Dose Testosterone

    As I mentioned above in this thread I did not notice an improvement with TRT that only put me at the top of the range, but now have improvement with a blood testosterone level of 2900 ng/dl. So it seems you have to go well over the normal testosterone range to get an improvement.
  2. Louie

    Cowden Protocol for chronic enteroviral infection?

    Just read Buhner's latest book - common sense approach well explained.
  3. Louie

    Any experience exercise (aerobic) vs lifting

    How many sets of strength training did you do? I can only tolerate 3-4 sets in one day and then rest the next otherwise PEM.
  4. Louie

    Any experience exercise (aerobic) vs lifting

    Aerobic very bad as can't even walk one block without triggering PEM. But I can lift weights 3 very intense exercises targeting multiple body parts at once (ie pull-ups, push-ups, deadlifts) 2 to 3 times per week resulting in muscle growth, but note I only do 3 exercises with a 4 minute rest in...
  5. Louie

    High Dose Testosterone

    My doctor is willing to continue to try at this level since it is the only thing he has tried that has had an impact.
  6. Louie

    High Dose Testosterone

    Sorry I mean't to say does 0.75 ml equal 150 mg (not ml) of testosterone. I take 300 mg of testosterone enanthate. Very interesting how you improved on TRT that put you at the top of the normal range. I did not notice an improvement with TRT that only put me at the top of the range but now...
  7. Louie

    High Dose Testosterone

    Hi TiredBill thanks for your post; very interesting. I also was at the very bottom of the range when I started TRT. Am I correct in assuming 0.75 ml equals 150 ml of testosterone per week? Can you describe more how much of a benefit testosterone has been, for example did it take you from...
  8. Louie

    High Dose Testosterone

    Yes I am aware and on aromatase inhibitors and HCG; good discussion for people unaware, but nothing you won't find on a myriad of bodybuilding sites. I was interested in hearing if anyone else, besides me, has found an improvement in ME/CFS on high dose testosterone.
  9. Louie

    High Dose Testosterone

    Testosterone replacement therapy (TRT) enhances your body's ability to improve protein synthesis and oxidative phosphorylation (OP) and red blood cell formation to name a few. Since ME victims have difficulty metabolizing carbohydrates and and fats it would seem one plausible treatment is...
  10. Louie

    Cowden Protocol for chronic enteroviral infection?

    Cowden Protocol is problematic as they are just herbs with some slight alterations to produce a product no one else sells and it is then grossly over-priced. To top it off the slight alterations have no scientific backing to support the changes. Follow Stephen Buhner's books as a cheaper and...
  11. Louie

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    I agree. There is an unfortunate underlying current of blaming oneself for being so sick because of trying to live life. There are many people who continue to get worse despite never overdoing it. I have been exceedingly careful the last 15 months with energy expenditure and yet I continue to...
  12. Louie

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    If the Citric Acid Cycle is impaired or glycolysis is shut down, how does this explain PEM? There may be a ready explanation and I would be interested in hearing it. As PEM is unique to this disease any hypothesis of course must account for it so I am sure Ron Davis has an explanation as he...
  13. Louie

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    I think appealing to philanthropists is a very good approach as this disease is now at the stage where some very wealthy philanthropists would be attracted to support it. Philanthropists like a cause that has been ignored by governments without good reason. I would encourage OMF to pursue this...
  14. Louie

    An Update on ME/CFS Research with Ronald W. Davis, PhD

    Donated 20% of my gross monthly income. Give till it hurts! Ron says they can make this go FASTER if they have money to hire more people. There has never been a better time or place to donate to ME research.
  15. Louie

    Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

    I can assure you and others repeatedly watching Jen's TED talk that the TED servers have software to track whether you are a unique or first time visitor and will not count as a "view" a repeat or multiple view more than once. This is to prevent special interest groups from skewing the counting...
  16. Louie

    "Meet Jennifer Brea" Video

    You can go to the Sundance Film Festival page and request a screening of Unrest in your community. Fill out the email form and wait for a response. At least it tells Sundance there is an interest in this film. I did it.
  17. Louie

    Is it worth the trip/cost to Dr Montoya Stanford Clinic???

    I am seeing Dr. Montoya and he seems focussed on a viral cause and thus anti-viral treatment. You say you have already tried several anti-virals so Dr. Montoya likely won't offer you much else. He is doing research so the above comments are subject to change. Hang in there.
  18. Louie

    First sign of Recovery

    Glad to hear you are doing better. I still don't know if I am better as after I recovered from the first flu virus in four years I got another flu three days later. Still trying to get over the second flu. But something must have changed as now two flus in two weeks when I had none in four years!
  19. Louie

    First sign of Recovery

    Targeting HHV6 and CMV. Started Vatrex February, 2016, didn't do anything so switched to Famvir, didn't do anything so switched to Valcyte about a month ago.
  20. Louie

    First sign of Recovery

    I recently started a new anti-viral. I have been on anti-virals for 8 months without any change but this new one has resulted in the flu/cold.
  21. Louie

    First sign of Recovery

    I have been sick with CFS/ME since 2004 and I have not had a flu or cold for the last four years (sick but never sick). Recently, I came down with a flu and cold at the same time. Since I am on a new treatment, I am curious if anyone else has found getting sick for the first time in a long...