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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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Search results

  1. H

    Nasal infection and rhinosinusitis treatment

    Thanks very much for your reply, Heapsreal. Sorry, but I'm not quite sure what you mean when you write 'Just what I have done'. So, to clarify, have you combined the Bactroban nasal ointment with Octenisan antibiotic bodywash MRSA decolonisation regime? Or, are you talking about your other...
  2. H

    Nasal infection and rhinosinusitis treatment

    Hi, I have a nasal infection along with longstanding chronic rhinosinusitis symptoms and inhalant allergies. When I blow my nose I produce dry, crusty, flecks of green snot; and it feels as if the inside of my cheeks (sinus cavity presumably) is coated. There is a feeling of fullness in my...
  3. H

    Help! Restless legs!

    I have in the past occasionally had restless legs in bed at night, and noticed that this resolved while I was talking LDN. So, in my experience, LDN can be an effective treatment for restless legs.
  4. H

    Help! Restless legs!

    Low Dose Naltrexone, maybe?
  5. H

    Doctors in and around London, UK

    I’m sorry to hear Dr Bansal is planning to retire completely in a few years time, even from his private practice. Is this something he said or your reading between the lines? I had a few appointments with Dr Bansal on the NHS, and his letters to my GP were always very helpful and informative...
  6. H

    Doctors in and around London, UK

    I’m interested to know if Dr Bansal still recommends CBT/ GET, now that he is no longer operating under the auspices of the NHS.
  7. H

    Low-dose SSRI to reduce neuronal apoptosis in the stress pathways and amygdala

    Prof Lombardi has recently been awarded a research grant by the Solve ME/CFS Initiative, to investigate JAK activation profiles in ME/CFS. This quote below is from his project summary: Characterization of Janus kinase (JAK) activation profiles in ME/CFS subgroups
  8. H

    Low-dose SSRI to reduce neuronal apoptosis in the stress pathways and amygdala

    I'm trying to understand more about the Janus Kinase-3 (jak-3) pathway, and how it might be involved in my doctor's hypothesis, set out above, as it is something he specifically mentioned... I've found this 2016 paper: "Role of Janus-Kinases in Major Depressive Disorder", looking at the...
  9. H

    Low-dose SSRI to reduce neuronal apoptosis in the stress pathways and amygdala

    Here, I think he is just saying that a low dose SSRI (or Tricyclic) can be used as a neuroprotective agent... I don't think that in itself is such a controversial statement, but quite how it relates to ME/CFS, I don't know.
  10. H

    What are you taking to lower BP?

    You could try MegaNaturals BP grape seed extract, 300mg caps. Check out patient feedback on iHerb.
  11. H

    I need feedback about explaining illness to others (specific incident)

    Hi! Yes, I see your issue. I think this is called ‘disclosure dilemma’. What and how much to say. I find that most people, who don’t have this disease, only want to hear a two sentence explanation about what it is. If it is a passerby, who you’re never going to see again, I think it is ok...
  12. H

    Unexplained hyperammonemia with loss of peripheral vision, HELP

    Treatment with Carnitine?
  13. H

    Considering Accutane. Good idea?

    My advice would be not to take Accutane. I wish I hadn’t. I’ll never know for sure how influential it was in precipitating the decline in my health, but if I could go back in time I’d not take it. Instead try probiotics, acetyl-l-carnitine and biotin. Don’t venture down the route of...
  14. H

    going private for treatment

    That's a very broad question. It depends on your expectations and the size of your wallet. The NHS is a very limited resource providing basic healthcare within a stringently managed budget. If you've not had your health condition investigated further, it's possible something has been missed...
  15. H

    Rituximab Phase III - Negative result

    I'm sure something has gone awry with the translation here. I can guess what Olav Mella is meaning to say, but does anybody know how that part should read exactly? "we could not let the patient group get out of bed for months and wait for the study to be published,"
  16. H

    Rituximab Phase III - Negative result

    It doesn't surprise me that SW makes this comment. There have been other trials of monoclonal antibodies in medical conditions he considers to involve both physical and mental pathology, like schizophrenia and depression. He is on record as saying the research was probably warranted. He knows...
  17. H

    POLL: Do you have tenderness at Perrin's point on your left breast (diagnostic for ME/CFS)?

    I’ve had a quick prod and not been able to induce a tender point in myself, so doubt self-diagnosis is accurate. However, I had a physiotherapist induce pain at this point coincidentally when doing a musculoskeletal examination. By my reaction she could see the area was tender, but hadn’t...
  18. H

    Burning when urinating

    Sounds like you have a urinary tract infection my friend, possibly kidney also, or prostate. One thing I will say clearly is to be very wary of taking Fluoroquinolone antibiotics, like Ciprofloxacin, for example. I had a severe adverse reaction to them, and still experience side effects today...
  19. H

    Burning when urinating

    No, you mean D-Mannose, not D-Ribose. That Mercola link was just the top one to come up in a google search, I hope it’s helpful. The D-Ribose won’t help a urinary tract infection, and might make dysbiosis is or yeast overgrowth worse if used excessively.
  20. H

    Daily Mail Today: ME patients might be genuinely ill after all.

    Hahaha! Original narrative they’ve gone for there!... It’s almost like a parody of themselves. Anyway, thanks for that DM, I guess.
  21. H

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    Full text, here: http://www.meassociation.org.uk/2017/11/new-scientist-blood-cells-in-chronic-fatigue-syndrome-are-drained-of-energy-04-november-2017/
  22. H

    Chest wall pain and fatigue

    I have an ache in upper left side of chest. Doesn’t seem to be associated with exertion or heart rate. Worse if I breathe in deeply, I feel like this part of my chest is constricted, like I can’t fully inflate that part of my lung, worse with URT infections, possibly more noticeable when lying...
  23. H

    "Unrest" updates

    Unrest is available on Amazon Video, in the UK, from last night. Pay to view: £12.99 to buy. You can install the Amazon Video app on your smart tv for free, and don’t need to be a Prime member to watch pay to view content.
  24. H

    "Unrest" updates

    I thought the same as you about the Guardian article, as it is true to form. But I’ve just clicked on the author link and she gives low ratings across many of the films she’s reviewed. She may just be a cynical person.
  25. H

    Does CFS F..k Up Your Immune System?

    I get everything that goes around, often worse and for longer than others.
  26. H

    Good article in Daily Express on Unrest

    Well, there was this, and this... I’ve just re-read the review (second link) and don’t disagree: it seems to be rather damning the movie with faint praise, and a meagre three stars (‘nothing to see here folks’). It also, somehow, still finds it appropriate to cast aspersions towards...
  27. H

    Emergency - What made you MORE sensitive?

    Any toxic dose of certain substances could do it, in susceptible individuals. In my case fluoroquinolone antibiotics and mega-dose B5 were harmful this way, possibly also DMSA. The microbiota may also be involved in regulating immune tolerance. Read more on immune tolerance, here. You may...
  28. H

    UNREST screening and reception at the Speaker's House, House of Commons

    I’d assume something along the lines that, for many people, the reality of everyday life with ME can be even more devastating than portrayed in the film? It isn’t redeemed by a love story, etc. But I wasn’t there so perhaps someone else can report back on this.
  29. H

    Top 3 Investigatory CFS/ME specialists in the UK?

    Based on your location, have you considered Dr Kenyon at The Dove Clinic? It’s near Winchester. I wouldn’t say he is an ME/CFS specialist as such, and he is very interested in some alternative medicine flavoured approaches so might not be your cup of tea. Also, inevitably the costs of...
  30. H

    Plaquenil - Possible eye-side effects

    Sorry pal, sounds like you’re going to have to stop the Plaquenil again, and reassess.