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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. anne_likes_red

    Bacillus subtilis probiotic may eliminate Staphylococcus from the gut and the nasopharynx

    Not enough benefit to buy another bottle. :) I took the multi spore biotic product containing a smaller amount of HU58 until mid December. I make natto regularly so I'm getting a different strain of Bacillus subtilis in my diet that way.
  2. anne_likes_red

    For NZ peeps - GcMAF treatment and nagalase testing available.

    I did, but no unfortunately it didn't help me personally. I know it helped others though.
  3. anne_likes_red

    safe and sound protocol

    Yes. I did an integrated listening systems program first, then I did the safe and sound protocol twice. All helped with sound sensitivity which was a relief, but I wouldn't say they made a lasting difference to my ME. S&S temporarily worsened my synaesthesia. The intervention is effective but I...
  4. anne_likes_red

    safe and sound protocol

    It's an auditory/sound frequency intervention. It can help with sensory regulation (and likely integration if properly supported).
  5. anne_likes_red

    Proprioception Dysfunction - treating this improved my symptoms (I think!)

    Updating. I had to postpone my originally planned April trip until October and I'm just back. *Phew*! I needed prisms on both sides as it turned out and they immediately restored full range of motion in my neck* and also my right hip. My head feels half the weight it did before and I am...
  6. anne_likes_red

    Some decades back, 1990 “Scientists Identify virus causing fatigue in ME“

    I was diagnosed in that era. My understanding was doctors at the time were noticing this was occurring notably in high achieving individuals (young upwardly mobile or whatever "yuppie" came from). I wasn't a yuppie I was still at school but at the time of ME onset I was very physically active...
  7. anne_likes_red

    Staph vaccine to treat CFS??

    Actually, :) this Reddit thread has a post from tmfire11 who contacted ameolife, the company I linked to in my previous post. tmfire11 wrote "I contacted the company and they said that a serving size (2 capsules) contains "15 Billion CFU of Bacillus Subtilis MB40 (Opti-Biome) and 330 Million CFU...
  8. anne_likes_red

    Staph vaccine to treat CFS??

    I looked everywhere for Bacillus MB40 a while back. It's included as "Opti-biome MB40" in unspecified amounts in a few formulated products like this one: https://www.ameolife.com/pages/digestive but I don't think it's sold as a single strain. The author of a study looking at the effect of B...
  9. anne_likes_red

    OSTEOPOROSIS AND DRUG CHANGES

    I have no reason to suspect I have osteoporosis however my hair mineral test indicated very low calcium and strontium. I decided to take Garden of Life's Bone Grow system for a few months before retesting. From the reviews it seems people doing DEXA scans seem to be getting good results with...
  10. anne_likes_red

    Optical red light therapy

    This will be one of Glen Jeffery from UCL's studies I expect. In an interview from a year ago he mentions some inexpensive red light devices made in Australia but he doesn't mention a brand or if the public can just buy them. It was on my list of things to chase up but I'm kind of up to the brim...
  11. anne_likes_red

    Bacillus subtilis probiotic may eliminate Staphylococcus from the gut and the nasopharynx

    I've been taking the Microbiome labs HU58 for a couple of months now. The first couple of days I developed a sore right side tonsil and for several nights I woke up sneezing in the night with tickling/irritation in the right sinus. I also had general 'die off' symptoms - extra fatigue, skin...
  12. anne_likes_red

    ME/CFS, Long COVID, Long Haulers updated disease model presentation August 2023

    There's a link to a discord group on Joshua's page here: (Not sure if I'm allowed to link it directly). https://bornfree.life/experimental-treatment-methodology/7/v3-54u-preview/42/
  13. anne_likes_red

    Lots of long COVID patients reporting major improvements with lactoferrin

    I see I shared this article with friends on facebook in April 2020. Might be of interest to you Wayne - or perhaps you've already run into it yourself. :)...
  14. anne_likes_red

    Lots of long COVID patients reporting major improvements with lactoferrin

    Over the course of 2020/21 some really interesting research around prophylactics and treatments for C19 was done at universities (worldwide). I noticed they published results on their own websites, but it was almost never picked up by the press.
  15. anne_likes_red

    Lots of long COVID patients reporting major improvements with lactoferrin

    I bought some of the Jarrow brand after coming across an article on the University of Florida website last year suggesting it might be effective against C19. I took 250 mg 2 x per day from when I got covid. I'm still taking Lactoferrin since I recovered but just at 1 per day - the 300 mg Life...
  16. anne_likes_red

    POLL: Do you sweat a lot from a 20 minute walk? Linked to overactive sympathetic nerves, and in turn, reduced Th1 antiviral immune responses

    GenXer here :cool: @Hip I regularly walk on the beach 20+ mins (then rest 10 before walking back home). I usually walk with my husband and we have noticed I get much warmer than he does. It's winter and I'm warm right to the extremities. I don't sweat though. In case it's of any significance I...
  17. anne_likes_red

    Bacillus subtilis probiotic may eliminate Staphylococcus from the gut and the nasopharynx

    I've been making the super gut SIBO yogurt (containing L Reuteri, L Gasseri and Bacillus Coagulans) since 2021. We just add a tbsp of each batch to the next as the starter. The first batch was made into starters and we froze those as 'insurance'. I started with the exact products and method...
  18. anne_likes_red

    Could and upset liver be a clue to Me/cfs?

    @mariovitali I noticed in a previous post - which I can't find now! - that you were taking TUDCA (250mg?) at midday and midnight. Is the timing based on factors other than a 12 hourly dose? For example circadian liver processes...or a preference to take it away from other supplements? Apologies...
  19. anne_likes_red

    Much worse following bone marrow biopsy

    I had some tenderness to the hip bone afterwards that I remember lasting a few days, but I experienced no additional PEM. I wasn't offered pain relief (apart from the skin anesthetic) for the procedure and I didn't find it painful, just a weird tugging sensation in the bone. I was relatively...
  20. anne_likes_red

    Proprioception Dysfunction - treating this improved my symptoms (I think!)

    Yes I started experimenting with a hard surface a couple of years ago after I found some of Dr Martins da Cunha's recommendations on a French posturology website. More recently my husband modified my side of the bed, so I don't have a soft option any longer. :) I find with the sleeping posture...
  21. anne_likes_red

    Proprioception Dysfunction - treating this improved my symptoms (I think!)

    Thank you, that is helpful! :) It sounds like the glasses need to be fixed to stay in a more precise position than is regularly required. They seem keen I have two pairs fitted, so if one comes out of alignment I have the spare ones handy. There's an optometrist in Sydney trained in how to...
  22. anne_likes_red

    Proprioception Dysfunction - treating this improved my symptoms (I think!)

    Hello again. Hopefully you're still doing well? I finally have all my ducks in a row and I'm planning to be assessed in a couple of months time. (Travelling from NZ so it's a bit of a mission.) In another message you mentioned being willing to share the type of glasses frames appropriate to...
  23. anne_likes_red

    Near Infrared Light (940nm) Improves COVID Outcomes.

    I lay on a bed outside until around 8am (when it got too hot) when I had Covid recently. The first week, any later in the day than that, it felt like the sun was taking more away than it was giving. I was OK outside again in the evening. It would have been a different scenario in winter I guess...
  24. anne_likes_red

    Near Infrared Light (940nm) Improves COVID Outcomes.

    Roger Seheult, MD of MedCram talks about a randomized control trial demonstrating the effects of near infrared light on COVID-19. The study is here: https://www.sciencedirect.com/science/article/pii/S1011134422002342
  25. anne_likes_red

    Anti nausea meds and long COVID

    I have Covid now (in NZ) and I'm using Thorne Peptiguard which contains bismuth citrate along with some gut soothing herbs - aloe vera, licorice and berberine. I buy my Thorne products from iherb. They've got a lot more expensive lately, I think in good part due to increased transport costs...
  26. anne_likes_red

    Signatures of Mitochondrial Dysfunction and Impaired Fatty Acid Metabolism in Plasma of Patients with Post-Acute Sequelae of COVID-19

    https://www.mdpi.com/2218-1989/12 Roger Seheult, MD of MedCram discusses long covid and fat metabolism mitochondrial dysfunction in this video:
  27. anne_likes_red

    Niacin and the gut

    I watched this presentation from Chris Masterjohn and decided TMG and glycine might be wise - actually I was already using glycine along with NAC before bed. Despite adding TMG I have to mention.....my acute positive response to Niacin has waned too. I'm still noticing benefits I think, but the...
  28. anne_likes_red

    Martin aka Paused and H.E.L.P treatment

    I'm a pure ME person. I was taking everything on that list (a little variation on the type of folate and selenium) except I was using Nicotinamide Riboside plus a small amount of transdermal niacinamide. I only noticed improvement after adding niacin. Way back, early 1990s, my GP trialed me on a...
  29. anne_likes_red

    Martin aka Paused and H.E.L.P treatment

    Thanks so much. x