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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. diwlo

    Extrasystoles and supplements

    Hi AndrewR, I have been having extrasystoles for 2 years now. They were very frequent from the beginning, then they went away for a couple of months and now they're back (more than 20.000/day). I have tried beta blockers, calcium antagonists and other medication I was given. Nothing worked, so...
  2. diwlo

    Fatigue, flushes, neuropathy, cloudy urine... not ME/CFS

    Thank you @Lisa108, B6 and B12 were in the normal range last time I got tested. Thank you @nanonug! I will talk to the people who are following me about mast cell activation syndrome - I think they never mentioned it. Thanks to all of you for your support. Wishing you strength and confidence!
  3. diwlo

    Fatigue, flushes, neuropathy, cloudy urine... not ME/CFS

    Hi Roxnhead! Well, I haven't improved a bit. The burning legs and the constant arrhythmia are bothering me a lot. I am still waiting for a diagnosis. They don't think its CFS, nor carcinoid (but they keep on testing for carcinoid...), nor mastocytosis; they just don't know - although they're...
  4. diwlo

    Fatigue, flushes, neuropathy, cloudy urine... not ME/CFS

    Hi everyone! Just a short update (having a bad day today and need to let it out...)! Basically, I am still waiting for a diagnosis. The symptoms are the same as described in my message above (Feb 25, 2016), but they are clearly worsening, especially the neuropathy and the fatigue. On top of...
  5. diwlo

    Fatigue, flushes, neuropathy, cloudy urine... not ME/CFS

    Thank you so much for your kind words and helpful comments. The symptom-websites systematically come up with carcinoid and masto, which is also what my doc was thinking of. Ruled out so far. Personally, I suspect some metabolic or histamine-related issue... but I guess these are not easily...
  6. diwlo

    Fatigue, flushes, neuropathy, cloudy urine... not ME/CFS

    Thank you for your reply! So far I had several blood and urine exams + whole-body PET scan, but I haven't been tested for autoimmune diseases. My doctor is a specialist in internal diseases. He now wants to present my case to colleagues from other specialties. I hope that some of them is going...
  7. diwlo

    Fatigue, flushes, neuropathy, cloudy urine... not ME/CFS

    Hi all, I guess this is just an update on my condition, and obviously a cry for help. I described my symptoms already in some previous postings (http://bit.ly/24rQsPz), but things are changing so I think an update would be good. Well, I decided to get a second opinion in another clinic, given...
  8. diwlo

    Tenofovir, is it similar to cmx001?

    I just felt that I had to share my experience with you and that this would help you decide what option you should choose. It's good to make decisions in an informed way, I think. But as you say, we don't really know why most of us are just permanently exhausted and we are all desperately looking...
  9. diwlo

    Tenofovir, is it similar to cmx001?

    Hi. Obviously, I completely understand that you are looking for adequate treatments for your CMV, but I can only advise you not to take Truvada if you are not hiv+. My chronic fatigue syndrome started after a four-week course of Truvada/Kaletra I had to take as a post-exposure prophylaxis. My...
  10. diwlo

    weight gain, IBS, cloudy urine

    Thank you very much for your replies! I got the ME/CFS diagnosis basically after exclusion of a whole range of other diseases. Thyroid tests came back okay, but I don't know about Graves and Hashimoto. I'll check that. Actually, what one needs is to find a doc who is "really" interested in what...
  11. diwlo

    weight gain, IBS, cloudy urine

    Hi, I have been diagnosed two years ago with ME/CFS but I am still having a hard time accepting this diagnosis - mainly because a whole range of symptoms described as frequent in ME/CFS-sufferers are missing (no post-exertional malaise, no muscle pain, no swollen lymph nodes, no sore...