• 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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  1. frog_in_the_fog

    Do you experience penile numbness?

    I certainly believe most of my symptoms collectively are autoimmune in nature.
  2. frog_in_the_fog

    Do you experience penile numbness?

    I have never made the connection, but it all makes sense now. Thanks @lauluce for starting the conversation. Now we have another symptom we can throw under the me/cfs umbrella.
  3. frog_in_the_fog

    In memory of Justin Noble - Justin30 on PR

    This is truly sad news. Justin's passing is a great loss to the community. He will be missed. My condolences to his family and friends.:tulip:
  4. frog_in_the_fog

    Disappointing Visit to Dr. Montoya's PA

    My thoughts... LDN does do something, it is not in our heads. I take the full 4.5mg dose in the morning without any ill effects. I could not take it at night as it disrupted my sleep and caused panic attacks. If candida really is an issue, this stuff works like a charm: Thorne Research...
  5. frog_in_the_fog

    Provocative ME/Sex Article (Washington Post)

    Yes indeed, we have life fulfilling sex all day long. NOT!!! In Japan they take sexual health very seriously, the government pays for licensed practitioners to assist with severely disabled patient needs. The website VICE ran a few stories on the subject, which drew negative attention to the...
  6. frog_in_the_fog

    Provocative ME/Sex Article (Washington Post)

    Sex for a person with ME can be painful, debilitating, disorienting, overwhelming, and for some just plain impossible. The most I can muster on a good day is a good long cuddle session with my favorite body pillow. You might think this is sad, but it is absolutely practical.
  7. frog_in_the_fog

    Does Anyone Have Math-Only Brain Fog?

    Sign me up for a cyberbrain implant, I think this would help a lot of us.
  8. frog_in_the_fog

    Does Anyone Have Math-Only Brain Fog?

    Trouble doing math isn't the half of it, just trying to dial a phone number can be a real challenge at times.
  9. frog_in_the_fog

    Is there a healing process in ME/CFS?

    I kind of feel the same way. Until there is a clear path to a cure, keeping things under control is the modus vivendi.
  10. frog_in_the_fog

    Co Enzyme Q10 reaction? whats going on here?

    Some people say CoQ10 keeps them awake. Every morning I take a 100mg dose of CoQ10 in liquid form, mixed with 1g acetyl l-carnitine & 500mg magnesium carbonate in a glass of water.
  11. frog_in_the_fog

    urgent: need help with Hyperthyroidsm, Thyroid "storm"

    A thyroid storm put me in the hospital with a bad case of Atrial fibrillation. The direct cause was an over active thyroid, which was later treated with methimazole. If the hyperthyroid is caused by an immune related issue then things get a whole lot more complicated, which was the case for me.
  12. frog_in_the_fog

    Does anyone know of a CF/ME support group in the San Francisco Bay Area?

    As a reminder, @Horizon runs a Saturday support call, please feel free to join us. The call starts at 5PM PDT and runs about two hours. A number of callers are from the northern and southern CA regions.
  13. frog_in_the_fog

    Wordpress help

    I can help out perhaps, send details via pm.
  14. frog_in_the_fog

    epinephrine injections study??

    Wow, I didn't know this. I was thinking of ordering some to have on hand. I don't think I will now.
  15. frog_in_the_fog

    Gordon Medical Community Sponsored Metabolomic Study (Individual Data)

    This was my thought exactly, I want to be open-minded, but it is not easy when you are bombarded with so much information from so many sources. We are each entitled to form our own opinions, but should we keep our unsupportive comments to ourselves? It is easy to be cynical when we feel we...
  16. frog_in_the_fog

    Mitochondria (including Naviaux): what are the implications for resting schedules?

    I am all for this "Aggressive resting therapy" concept. I think this all fits quite well with what the research is uncovering. If we can't wake up the energy production cells in our bodies, we should work to develop methods to best utilize what energy we have. If we can somehow boost our...
  17. frog_in_the_fog

    Gordon Medical Community Sponsored Metabolomic Study (Individual Data)

    Yes, it seems many practitioners are grasping at straws. Science / serendipity / trail and error, these are what we have to work with.
  18. frog_in_the_fog

    Gordon Medical Community Sponsored Metabolomic Study (Individual Data)

    You know I read this and I didn't think twice about it till now. Thanks for pointing this out! No conflict of interest, my foot!
  19. frog_in_the_fog

    GP Involvement in Diagnosing Symptoms of ME that could be caused by Adrenal Problems

    I tried alternative medicine right after western medicine decided there was nothing wrong with me. I saw a doctor in my area that claimed to have cured people of their chronic fatigue. Perhaps he had some success, but his choice of supplements and homeopathic medicines only made me worse. He...
  20. frog_in_the_fog

    Gordon Medical Community Sponsored Metabolomic Study (Individual Data)

    Well it looks like Gordon Medical is covering all the bases. Not sure I would trust any current treatments from a clinic that can't decide on which way to go on me/cfs. The cannabis angle doesn't always work, as there are so many varieties, and potency variation. For pain management some...
  21. frog_in_the_fog

    What biology etc. book(s) should I read to understand ME research & theories?

    If you are interested in the microbiome angle, I would recommend this book: I Contain Multitudes: The Microbes Within Us and a Grander View of Life It is also available in audio & ebook formats. Many public libraries are picking up this book. Here is a thread about it.
  22. frog_in_the_fog

    Bacteria lurking in blood could be culprit in countless diseases

    Now for something really scary, the evolution of bacteria.
  23. frog_in_the_fog

    Mainstream Canadian News Report

    This is the kind of thinking that makes me feel sad for us all. I wondered for years if I was actually physically sick because every doctor just said I was fine. This is something many of us face way too often.
  24. frog_in_the_fog

    Clinical Trials Doctors Demand Ownership Of Patients' Data

    Currently when you agree to be a Stanford test subject, you are agreeing to Stanford keeping your data for 100 years.
  25. frog_in_the_fog

    Cold feet and hands?

    Yes, you can buy a A1C test unit with supplies for under $50. You could also get a regular glucose test unit with strips fairly cheaply. All these can be obtained over the counter. Amazon or eBay are your friend. Always check the expiration date on supplies.
  26. frog_in_the_fog

    Clinical Trials Doctors Demand Ownership Of Patients' Data

    I think the benefits of sharing data far outweigh the risks in my opinion. I don't block ads on forbes either. If you are worried about security view the site in incognito mode.
  27. frog_in_the_fog

    Cold feet and hands?

    @Horizon do you monitor your blood sugar? Might be good to get an A1C done just to be sure.
  28. frog_in_the_fog

    solved lifelong 3AM insomnia by speeding up colon

    This makes sense! I never considered it. My colon seems as tired as the rest of me these days. As it was pointed out to me, this gut serotonin does not pass the blood brain barrier.
  29. frog_in_the_fog

    Questions for Dr Montoya

    I better make some phone calls to find out what is going on. Since the ball appears to have been dropped...
  30. frog_in_the_fog

    Questions for Dr Montoya

    Yes, I know what you are taking about. It seems that perhaps a good deal of these PAs are the same. I wonder if they can ever become good doctors acting the way they do. Of course some of us are a real pain to the medical profession, but it is not our fault.