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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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  1. Spinney Lainey

    Firzone sauna for sale in London

    Firzone sauna FZ-100 Portable far infrared sauna for sale £189 new and I am selling mine for £70. Collection from SE19
  2. Spinney Lainey

    KDM and immunity

    Yes, I did see him but am pretty broke, so would like to find out what he can offer for immunity to weigh-up whether it's worth pursuing treatment with him first....
  3. Spinney Lainey

    KDM and immunity

    Can anyone tell me what drugs/treatments KDM has to offer for immunity? I am trying to weigh-up whether it's worth pursuing treatment with him further. Thanks
  4. Spinney Lainey

    GcMAF

    4 of my inflammatory markers are raised, including IL 8, so may not be good. @Sushi - does KDM prescribe Ampligen, or something else?
  5. Spinney Lainey

    GcMAF

    What's LLMD? Do you have to pay for it? Have you felt any effects on your immune system/health?
  6. Spinney Lainey

    GcMAF

    Does anyone take this? If so, where do you get it from, how much did it cost and has it helped?
  7. Spinney Lainey

    Phone consultation with KDM, input gratefully received....

    @Valentijn would the LTT test test for any co-infections, as well? If so, what other infections does this test for?
  8. Spinney Lainey

    Phone consultation with KDM, input gratefully received....

    @RML do you remember having had tick bites?
  9. Spinney Lainey

    Phone consultation with KDM, input gratefully received....

    Can't see the conversation...
  10. Spinney Lainey

    Phone consultation with KDM, input gratefully received....

    Yeah. Seems very strange. Especially as I don't remember having had a tick bite.
  11. Spinney Lainey

    Phone consultation with KDM, input gratefully received....

    I need to do some more research into this and speak to my GP.
  12. Spinney Lainey

    Phone consultation with KDM, input gratefully received....

    To be honest, I had wondered about that. Especially now.
  13. Spinney Lainey

    Phone consultation with KDM, input gratefully received....

    Just looking for more positive information about it.
  14. Spinney Lainey

    Phone consultation with KDM, input gratefully received....

    I just looked up 'lyme disease LTT test' in google and it came up with this: http://www.hpa.org.uk/web/HPAweb&HPAwebStandard/HPAweb_C/1204013002855 which is rather alarming.
  15. Spinney Lainey

    Phone consultation with KDM, input gratefully received....

    That's interesting. It makes a bit more sense to me now if your results were negative for the other tests, too. How is your treatment going?
  16. Spinney Lainey

    Phone consultation with KDM, input gratefully received....

    Not sure, I'm afraid, as I don't know what I'm looking for but just uploaded the results. I know he mentioned cytokines and elastase when I asked but then just said he'd put them in the treatment plan.
  17. Spinney Lainey

    Phone consultation with KDM, input gratefully received....

    He didn't really say to me what the test was called. He just said test for 'acute Lyme'. It's interesting to know that you had a different test for it, too. Did he diagnose you with Lyme?
  18. Spinney Lainey

    Phone consultation with KDM, input gratefully received....

    I have the copy of my results to look at but didn't understand most of it
  19. Spinney Lainey

    Phone consultation with KDM, input gratefully received....

    I had my phone consultation with KDM after receiving my results. I am rather mystified. He was very brief and said he thought I had inflammation due to 5 of the inflammatory markers being elevated and thought I had Lyme Disease. Apart from this, he also said my gut flora was a disaster and that...
  20. Spinney Lainey

    My first appointment with KDM

    The receptionist said I could cancel the appointment if my results weren't back and she also said that the treatment plan would be send after the phone consultation.
  21. Spinney Lainey

    My first appointment with KDM

    @justy - how long after your visit to KDM did you booked your follow-up consultation? I just booked mine for 11th July, which is just over 2 months after. Hopefully the results will be back then.....
  22. Spinney Lainey

    My first appointment with KDM

    As above :)
  23. Spinney Lainey

    My first appointment with KDM

    Sushi changed it :)
  24. Spinney Lainey

    My first appointment with KDM

    Hi Justy. Glad it went ok for you, too. And yes, I agree - that garden made a refreshing change from the industrial estate! Stupidly, I hadn't thought of booking my follow-up yet! Totally kicking myself! I guess I was thinking of seeing his treatment plan first but now it'll probably take ages...
  25. Spinney Lainey

    My first appointment with KDM

    I went to my appointment back in May. Sorry this has taken me so long to document! I've had a lot going on. Generally, it was a very positive experience and am now eagerly awaiting the results. I went with my Mum, who I needed to push me in a wheelchair and we took the Eurostar. The Eurostar...
  26. Spinney Lainey

    Any recommendations for first appointment with KDM?

    Many thanks for your helpful suggestions! Will let you all know how it goes!
  27. Spinney Lainey

    Any recommendations for first appointment with KDM?

    I am going to see KDM for a first appointment in a couple of weeks. Does anyone have any suggestions for how to get the most out of this session with him? @Sushi - please would you mind tagging the other people that have been to see him? Many thanks
  28. Spinney Lainey

    KDM food allergy tests

    Thanks @Sushi that explains it! I didn't know what IV meant - I was thinking of the roman numeral for 4!! :rofl:
  29. Spinney Lainey

    KDM food allergy tests

    What does this mean, exactly?
  30. Spinney Lainey

    KDM food allergy tests

    Isn't it a bit ironic then, that these are used as treatment? Sushi said that KDM generally used narrow spectrum abx. Is tbat what you were taking?