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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. RosieBee

    Anyone had experience with the optimum health clinic UK?

    I regret wasting my very slender resources going to the Optimum Health Clinic. I did speak on the phone with them about my previous experiences and understanding of ways to treat ME to make sure they would not be covering old ground, so I was disappointed to find it was an expensive form of...
  2. RosieBee

    Lyme and Tinnitus

    Here is a quick link to get you started http://healthimpactnews.com/2013/hyperbaric-oxygen-therapy-is-so-effective-it-is-a-threat-to-medicine-so-fda-moves-to-restrict-it/
  3. RosieBee

    Lyme and Tinnitus

    I recently started HBOT (hyperbaric oxygen therapy) and found the tinnitus stopped during the 'dive'- it did return later, but the sound of silence was lovely.
  4. RosieBee

    Billionaire's whole family is struck with Lyme disease

    John Caudwell is on fire! Here he is on ITV this morning and he did a radio broadcast today as well. He gives a passionate account of his son's long illness with Lyme disease and describes how he intends to use his money and influence to change diagnosis and treatment in the UK. He quotes how...
  5. RosieBee

    Ehlers Danlos Type 3 Hypermobility - Do you have it?

    I had hypermobile 'double jointed', bendy body etc etc all my life - developed illness in adult life that was diagnosed as ME 24 years ago. Just a few weeks ago I had a diagnosis of POTS and am being referred on to gentic testing for EDS due to the clinical history of not just myself but also...
  6. RosieBee

    Beaver gets Lymed. (Trimethoprim, Plaquenil?)

    @WillowJ thank you for telling me. I am devastated at this news. I must have missed it. How very very sad.
  7. RosieBee

    In Memory of Bevan Jeffery (beaverfury)

    I just learned that Bevan is gone. I am devastated at this news and so sad. He is one of many people I have come to feel as familiar in my virtual online life, but he probably wasn't even aware of me. We are like shadow friends sharing each other's lives, never meeting, often not even commenting...
  8. RosieBee

    Perrin/lymph drainage/massage: makes sense or not?

    Hi @h111, Thanks for the analysis of Perrin's youtube presentation, which I haven't seen, but it sounds from your description that it is not as comprehensive as it could be. I knew Raymond Perrin 20 years ago when he was first working with people with ME. To put your mind at rest, the...
  9. RosieBee

    Beaver gets Lymed. (Trimethoprim, Plaquenil?)

    How's it going @beaverfury? How is the antibiotic regimen going?
  10. RosieBee

    Does anyone take echinacea anymore?

    Yes, the advice is from Stephen Buhner, he strongly advises against E. purpurea unless you are juicing the fresh plant. He says E. angustifolia is not an immune tonic, but a stimulant to the immune system. To be effective it must be taken frequently and in high enough doses, but not continued...
  11. RosieBee

    Does anyone take echinacea anymore?

    I hunt down the E. angustifolia that really does work for me against infections/ colds etc, E purpurea is much weaker. Great recommendation @PeterPositive, Buhner's books on herbals are really useful and readable - his information is well backed by references, his personal experience and common...
  12. RosieBee

    New Lyme info from Stanford…possible treatment

    I have been reading about desloratadine and pondering the manganese vs lyme issue that is swirling in my mind. Perhaps some of you have comments or thoughts. I had started to get good results taking manganese to reduce the sulphur problems I get with my CBS snp (methylation protocol). THEN I...
  13. RosieBee

    How many people have been ill with CFS/ME for over 20 years?

    Thanks @Annesse for that reference - Interesting about increased IL-6 reducing cytotoxic function. I wonder if that also would suppress the immune response to lyme disease? After more than 20 years of ME I got bitten by ticks and had a big reaction (especially bad cognitive problems, strangely...
  14. RosieBee

    How many people have been ill with CFS/ME for over 20 years?

    @Mij Very similar story to me and within a few weeks of my first collapse! I have talked with many others, and there are those who have posted here that also fall within the late 80s early 90s period for their first collapse. The combination of vaccinations or a mediacl operation with acute...
  15. RosieBee

    How many people have been ill with CFS/ME for over 20 years?

    Sudden onset 24 years ago in December 1990. A really nasty flu raged in 1990 - it left me so ill and weak I couldn't lift the phone next to my bed. My Dad had a stroke, the flu was that virulent. When I collapsed I had recently had a minor operation (lumpectomy) and a series of vaccinations (to...
  16. RosieBee

    Looking for source for Japanese Knotweed

    Paradise brand is recommended by Stephen Buhner and you can get this sent to UK from iHerb.
  17. RosieBee

    Do B Vits feed Lyme?

    I don't have a written source; on another forum a person was describing the protocol their LLMD was using with metro (Flagyl) for two weeks with no magnesium; then two weeks of magnesium with no Flagyl. Alternating this pattern. It was a discussion about pulsed therapy, a very popular protocol...
  18. RosieBee

    Multi-mineral supplement?

    I asked about multivit/ mineral supplements recently. Here is the thread: http://forums.phoenixrising.me/index.php?threads/which-multi-for-methylation.29848/#post-456247
  19. RosieBee

    Do B Vits feed Lyme?

    @ Hanna I would like to resolve this too - I have been warned off vit D too (Marshall Protocol? I think). On another forum I was reading that the LLMD suggests pulsing magnesium and antibiotics alternately - seems to bring out the borellia then it can be killed.
  20. RosieBee

    Which multi for methylation?

    Thorne III and IV seem to be in stock; Pure encapsulations looks a bit expensive. Thanks for the recommendations and helpful information.
  21. RosieBee

    Which multi for methylation?

    Yes @adreno, I used Thorne Basic Nutrients V last year (recommended by Rich) but it seems to be out of stock at the moment. Can you recommend one of the others in the Thorne Research range to go with methylation block?
  22. RosieBee

    Which multi for methylation?

    Thanks @Martial. Yours is specifically B vitamins. I am looking for a supplement with a full range of minerals and vitamins.
  23. RosieBee

    Which multi for methylation?

    Which multivitamin/ mineral supplement are people using now? I was using Yasko's Neurological Health Formula from Holistic Heal, but that seems to be discontinued. I used Thorne Basic Nutrients V last year, but that seems to be out of stock everywhere. I am so sensitive to everything it takes...
  24. RosieBee

    Injections not working and supplements in the UK

    I live in the UK too and like Linda I get most of my supplements from iHerb. I find even if I have to pay the customs (I think it is VAT plus £8 handling charge) it is still very much cheaper than most places in the UK. Best of luck Rosie
  25. RosieBee

    Yasko's simplified protocol summary and question about her supplements.

    I get confused about potassium - How do I recognise when it is a problem? Is there a good thread about this?
  26. RosieBee

    Feel better for Stopping all supplements

    @ Justy - so much of what you describe is so familiar. Super-sensitive to drugs etc; following the advice of ME-friendly Drs but baffling the doctors with my puzzling test results; inexplicable reactions to supplements and treatments; struggling with adrenal and thyroid treatments - if I had a...