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

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  1. Jenny

    Shingles Vaccine Yes or No Part Deux

    Has anyone had the shingles vaccine Zostavax? My GP surgery has just asked me to come in to have it. I believe it’s a live vaccine so I’m a bit wary. But my mum had shingles several times very badly and was in severe pain for years. I don’t want to go through that.
  2. Jenny

    Comment by 'Jenny' in 'Connecting the dots ... Is ME/CFS a complex fungal intolerance? (part 6)'

    Very sorry to hear this Froggy. It didn’t cause any more pain than usual but some other symptoms were worse. I’ve stopped it for now.
  3. Jenny

    Comment by 'Jenny' in 'Connecting the dots ... Is ME/CFS a complex fungal intolerance? (part 6)'

    Thanks for this Kurt. Very helpful. Can I ask - have you tried Cistus tea? I’ve heard it can be effective against candida. I’ve been trying it for a week or so, but now feel worse (die off?) so going to have a few days break.
  4. Jenny

    Sodium cromoglicate (nalcrom)

    Very old thread! But wondering about people’s experiences with Nalcrom. I’ve been on it for 10 days with no changes, good or bad. But it seems a trial needs to go on for longer. I don’t seem to react to anything immediately but it’s possible that worsening symptoms are linked to a build up of...
  5. Jenny

    Doctors in and around London, UK

    @PracticingAcceptance I was referred to Dr Chee, an immunologist at the Royal Free in London, by Gabrielle Murphy at the so- called Fatigue Clinic. He did a lot of non-standard tests, and we tried all sorts of treatments including B12 injections, and long-term Valtrex. He was also prepared to...
  6. Jenny

    Genetic Predisposition for Immune System, Hormone, and Metabolic Dysfunction in ME/CFS: A Pilot Study. Perez et al 2019

    Hi kday What treatments do you think would help mannose binding lectin deficiency? I have this - in fact I have no MBL at all. But I don’t seem to get any more infections than normal people. I wonder if some people with ME have MBL deficiency together with some other genetic variations, the...
  7. Jenny

    In this post I show you how CFS/ME could be an acquired immunodeficiency. Please share this informat

    Hi Manuel I wonder if my results are consistent with your theory. About 8 years ago I had the following result: Low CD4 + CD45RA+ CD38+(15.9, range 29-69), normal absolute CD4, and normal CD4 percentage of lymph. Low percentage of CD19 B cells (8% of lymph, range 12-22). Mannose binding...
  8. Jenny

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Just to follow up on this. For no apparent reason I went into a bad relapse about 2 months ago, after 53 treatments. Been bedridden a lot so can’t get to centre. So have to conclude it’s not working for me, at least at only once or twice a week. I might try intensive treatment again at some...
  9. Jenny

    HBOT for ME/CFS/CFIDS

    I haven’t answered the poll as my experience doesn’t really fit. I felt a lot better after about 16 treatments, going 4 or 5 times a week. This lasted about 5 weeks. Then I got flu and couldn’t go for a while but then continued, mainly twice a week. During this time I felt I was slightly better...
  10. Jenny

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    I've done about 40 treatments now, mostly at 33ft. I felt a lot better after the 14th treatment and this lasted several weeks. In January I got flu and the ME symptoms returned to some extent, but not too badly. But the flu meant I had a few weeks off oxygen. In Feb I got back to it and I...
  11. Jenny

    Benzodiazepines (Temazepam) don’t help sleep - your experience

    Clonazepam is the best thing I've ever tried for sleep. I take 1mg about twice a week and zopliclone at other times, which is also good. Done this for years and so far don't seem to have built up tolerance. Nothing else works - I've tried all kinds of herbs and supplements, and amytriptyline.
  12. Jenny

    Vagus nerve

    http://www.businessinsider.com/vagus-nerve-stimulation-2015-6?IR=T Interesting article about the importance of the vagus nerve.
  13. Jenny

    BBC to broadcast programme on ME in series on mental health?

    https://www.facebook.com/meassociation/posts/1669457453111906 Have I got the wrong end of the stick here? The ME Association seem to be asking for young people with ME to participate in a BBC documentary within a series on mental health!
  14. Jenny

    Symprove - Anyone tried?

    Thanks Vicki. They work fine.
  15. Jenny

    Symprove - Anyone tried?

    Thanks Vicki. I'm so sorry you had such bad symptoms. Do you have a link to the study that showed high levels of acidophilus and enterococcus feacium in ME, please?
  16. Jenny

    Symprove - Anyone tried?

    Hi Chris How did you get on with Symprove? I've taken it for 3 weeks and no effect yet, good or bad. How would you compare it to Bravo?
  17. Jenny

    Planning to see Dr William Weir, Harley St. Any advice or opinions?

    I emailed him a few months ago asking him about his experience in using anti-retrovirals and whether he might prescribe them for me. I gave him my history. He was good enough to arrange a (free) phone consultation, where he explained that he has had very mixed results, and we decided that I...
  18. Jenny

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Yes I have had a lot of pain over the years, particularly back of neck, shoulders, mid back, knees and hands. Also bad headaches. I've had no pain since HBOT but the pain always fluctuated a lot, more than other symptoms, so difficult to say definitively that it helped.
  19. Jenny

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    No idea. I was diagnosed with borrelia at the Breakspear many years ago and had years of abx which did nothing. I don't have any confidence in that diagnosis. Also had years of Valtrex which did nothing.
  20. Jenny

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    I'm feeling hugely better. This good spell started after 14 HBOT treatments, about a month ago. I've had the best Christmas for 15 years, quite literally. I've now done 23 sessions and have reduced them to once a week over the last 2 weeks. I'm active all day, don't have to rest after 10...
  21. Jenny

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Reporting back on HBOT. I've done 10 sessions over the last 3 weeks. Three at 8 feet, 6 at 16 feet and 1 at 24 feet. 16ft is 1.5 ata and 24ft is 1.75 ata. No problems with it, but no improvements either. I had hoped that at least my sleep would have improved, but it hasn't. It's early...
  22. Jenny

    Perrin claims 86% success rate diagnosing ME/CFS

    He said right from when I first saw him that not everyone improves, and that he has more success with people who have only had ME for a short time. (I had had ME for 29 years at that point.) He said that he doubted that I would be cured with his treatment, but he hoped I would get some benefits...
  23. Jenny

    Perrin claims 86% success rate diagnosing ME/CFS

    Interesting. I saw Raymond about 6 years ago. He was using these criteria then, and I only met one, the fifth. Nevertheless he agreed I had ME (at that point I had had 29 years of relapses and remissions, was in a bad spell when I saw him, and met the CCC definition.) I had about 45 lymphatic...
  24. Jenny

    Regularity and frequency of relapses

    Over the last 10 years or so my relapses have got more frequent. And recently, they also seem to be becoming more regular. No matter what I do, I have a relapse about every 4- 6 weeks (from end of one to the beginning of another). It does make life a bit more predictable! Does anyone else find...
  25. Jenny

    How often do you get twitching eyelids & for how long?

    I have this - twitches last 30 secs or so every 15 mins or so. This will go on for a week or so, then disappear. It doesn't seem to be related to relapses - they come irrespective of how I'm feeling otherwise. And I take Mg all the time and that doesn't help. Just another mystery.
  26. Jenny

    The British Gut Project

    Has anyone had any useful results from participating in the British Gut Project?
  27. Jenny

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    I started HBOT this week. I've only done two sessions so far.
  28. Jenny

    Anaerobic threshold calculation accurate for pacing?

    I was using the formula in Plum's post: My age is 67 220-67 = 153 153x0.6=91.8
  29. Jenny

    Anaerobic threshold calculation accurate for pacing?

    According to this, my max heart rate would be 90. Yet I'm often way above this when I've just been lying down for a few hours. And I woke at 3 am last night with a rate of 120. It fluctuates hugely and I have no control over it.