• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. L

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    Please take heart irregularities seriously. In hospital recently for pneumonia I had an echo cardiagraph that showed I had diastolic heart failure. This was the cause of swelling in feet and lower legs I had had for at least five years. So it's worth having symptoms properly checked rather than...
  2. L

    MitoQ Scam Email

    Just in Time, Ema! I also got this today and did nothing while leaving it for later. Good call.
  3. L

    Rituximab Phase III - Negative result

    Hi, everyone, I haven't posted for a long while as I came down with acute myeloid leukemia earlier this year and have been under intensive treatment with chemotherapy and blood transfusions. In the beginning I asked if I could have Rituximab but was told this is only for those with lympocytic...
  4. L

    Hyponatremia as a cause? Salt deficiency, dehydration, too much peeing

    @boolybooly Many thanks for going to the trouble of providing this reply. Very interesting, although at first glance some of the responses in the various threads seem contradictory. A lot of it is above me at the moment but I'll work on that. Several good ideas and approaches to try here...
  5. L

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

    I hope this isn't off topic, but for @MeSci, @boolybooly, I also have high blood pressure AND hyponatremia and have had for most of the time of this disease (20 years). I also have erythromelalgia so was interested in boolybooly's mention of "erythrocyte sedimentation test which has...
  6. L

    Want advice about local situation- regards the difference between fibromyalgia and CFS

    Hi, @redrachel76, Just read this post on Cort Johnson's site, which may help your friend inform her doctors about her condition. Good luck! https://www.healthrising.org/blog/2017/02/23/genes-mitochondria-autoimmunity-chronic-fatigue-syndrome-alan-light-talk/
  7. L

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

    I've just donated again. Can't wait for the next instalment from this team dedicated to our welfare.
  8. L

    Phoenix Rising: The Gift That Keeps on Giving All Year Long

    Me too, Jody. I spend time on this site every day. Usually don't have the time or energy to respond, but have the same feelings of support and camaraderie. More to the point, perhaps, I have learnt so much here from more knowledgeable members that isn't available from the usual media sources. I...
  9. L

    $240,000 raised!!! #TripleTuesdayOMF- For every $1 donated OMF will receive $3!!! $100k goal!

    Just donated. I must congratulate the donor who is multiplying our gifts. This is so generous!
  10. L

    Lipkin and Hornig ME/CFS Monster Study: Microbes, Immunity & Complex Data

    Many thanks to the whole research team and also to the crowdfunding team. I've donated and wish them the best. Any chance of an updated amount raised so far like an earlier crowdfunding effort? Love to know how we're doing along the way. All the best.
  11. L

    Specialist air mattress advice - UK

    Hi, will.syd, Sorry to hear about your mother's difficulties. Have you tried a sheepskin rug to go between her body and the mattress you already have? My mother was in hospital with a broken leg for about two months. She was on an air bed yet she still needed something softer under her right...
  12. L

    Rituximab in Australia

    Hi, all, I see that much of this thread is several months old, however, this is just a point about info on Google: I just typed non hodgkin's lymphoma + rituximab + australia and got lots of sites. From it I understand that Ritux is currently being used in Australia for rheumatoid arthritis...
  13. L

    Are there instances when you can't have Rituximab?

    I'm interested in this discussion, of course, but I don't understand 'different antibodies.' Can someone enlighten me please? Cheers.
  14. L

    Duloxetine/Cymbalta for fibromyalgic pain….

    Hi, all, I've been on Lyrica and duloxetin/Cymbalta for about 3 years for horribly painful toes, due to small fibre neuropathy. The toes (and hands) are usually worse during hot days or from contact with bedclothes at night. I think both help: it's nearly impossible to sleep at night without...
  15. L

    Anyone been to the Griffith CFS/ME Clinic?

    @redaxe Yes, the UNSW medical lifestyle clinic is the clinic the Prince of Wales immunology specialist referred me to. As I said, the psychologist helped me, partly by reassuring me through the tests that my cognitive functioning is still okay. Also, he suggested I go to a neurologist at Sydney...
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    New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

    @alex3619, Sorry, everyone, don't want to hijack this thread, but do want to be reminded of the breakthroughs for fibro and IBS. Alex, can you help please?
  17. L

    Anyone been to the Griffith CFS/ME Clinic?

    Sorry to hear the Griffith Health Institute Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Specialised Clinic (phew!) isn't taking new patients. What can you do now? In Sydney, the Prince of Wales team do give comprehensive reports back to the referring GPs. If your doctor won't refer you...
  18. L

    Anyone been to the Griffith CFS/ME Clinic?

    Hutan, They said CFS but didn't get fussed about any name as far as I could see. They just did the most basic tests like measuring blood pressure on standing, etc., and then questioned me about my symptoms. I think they relied on my previous blood tests for the diagnosis of CFS and merely sought...
  19. L

    Anyone been to the Griffith CFS/ME Clinic?

    Hi, everyone, we've been (my husband and I) just last month, after a 6 month wait. Comprehensive questionnaire to fill in first before you go. Lovely, sympathetic, knowledgeable people but they really don't study patients in depth during the visit. Simply confirmed I have the disease based on...
  20. L

    Immunology in five-minute bites: T cells, cytokines and MHC

    Thanks, Simon, This is a really interesting way to explain aspects of the immune system. I imagine you're finding the course fascinating. Hope you keep posting. I'm going to use this to look at my blood studies. I've never had any explanation for the results. In particular, what does it mean...
  21. L

    Serum cytokines in patients with moderate and severe ME/CFS

    Yes, thanks for posting, Heapsreal. I was aware they were including severely ill patients when they put out a call earlier. I've applied with my husband to visit the clinic early next year. I don't mind flying up to them from Sydney. They are the only group offering hope based on up to date and...
  22. L

    Science at the UK CMRC Conference, 1-2 Sept 2014

    Hi, everyone, I'm not really sure if my comment is on topic, but speaking of small fibre neuropathy, burning feet, etc., Cort Johnson has some really informative posts on http://www.cortjohnson.org/, particularly his last two entries. I've found these and his earlier post on results of Dr...
  23. L

    Lyrica & Savella

    Hi, There's a good post right now on Health Rising 2014 at: http://www.cortjohnson.org/blog/2014/06/20/cancer-research-improve-treatment-widespread-pain-fibromyalgia-mecfs It's discussing small fibre neuropathy and pain treatments. It doesn't recommend anti-depressants. Also, over the counter...
  24. L

    Please Help Me Understand Aerobic Energy Production

    Oh dear, oh dear, oh dear... But before we dissolve into a puddle on the floor, can we consider the number of good universities, like Queensland's Griffith University, where good work is being done on ME/CFS and get some fire back into our bellies? Still working in metaphors, what do a few...
  25. L

    Queensland researchers hopeful of Chronic Fatigue breakthrough

    Hi, all. That's a great video excerpt, Firestormm, very respectful and hopeful. It was shocking to see how badly Amity Slockee's mobility is affected, and I really hope the results from Professor Sonya Marshall-Gradisnik's study will be released soon. Another relevant issue that is heightened by...
  26. L

    The Lipkin Microbiome Crowdfunding Campaign Launches!

    Many, many thanks to all of you working on Phoenix Rising and this thread in particular. It's true, your site has given us great companionship, and hope, as well, by giving us vital information about research and so on over the years. This study sounds tremendously useful and I too would drop...
  27. L

    Interview: Ian Lipkin’s Million Dollar Appeal for Microbiome Study

    Hi, all. I've just donated from Australia. My very first symptoms were atypical gut problems, followed by all my other symptoms. I've just recently benefited from a course of Rifaxamin. At first I didn't think it had worked, but now, 6 months later, I'm finding I can eat lots of food I haven't...
  28. L

    Reminder of all the positive things happening in 2014 for ME/CFS

    Many thanks, Akrasia, for the information you've posted here. I've just printed out this thread plus the information provided from the links to avoid mangling it all in my memory. I'm trying to avoid getting giddily excited at all this news. Instead, this morning I've been researching cytokines...
  29. L

    Red blood cell magnesium and chronic fatigue syndrome

    That's really frustrating! Can you return to the specialist's surgery for them to order the tests on your behalf?
  30. L

    Anyone got a good constipation remedy?

    Bob, the Metamucil consists of psyllium husk power and sucrose. But, Izola, the one thing I forgot to say was that it's probably a good idea for you to see a gastroenterologist and maybe have a colonoscopy to ensure there are no polyps or other nasties causing your problems. I know we can't...