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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. yabeeb

    Borrelia Miyamotoi Treatment

    Hi there Unfortunately I haven’t heard from anyone who’s undertaken the treatment. Personally I don’t want to pay for IV antibiotics as I’ve already spent so much already, so if I go ahead with the treatment, I will use oral antibiotics. When I asked KDM about oral antibiotics he said they won’t...
  2. yabeeb

    Borrelia Miyamotoi Treatment

    Hi has anyone actually had any improvements / success from taking Ceftazidim, Flagyl and Doxycycline (either IV or orally) for Borrelia Miyamotoi - as recommended by KDM? thanks
  3. yabeeb

    Post Lyme Treatment with KDM

    Hi - I am interested of people’s experiences of treatment with Kenny De Meirleir and whether anyone has had a significant and sustained improvement in symptoms of chronic lymes? I saw him in early 2015, did the 12 weeks IV abx followed by oral protocol. Definitely saw an improvement in first 6...
  4. yabeeb

    IV Clinic for Lyme Treatment in London

    Hi @jay185 Do you mean do they do intravenous antibiotics? If so, yes I think so. By the way, the correct website is www.augmentedhealth.co.uk
  5. yabeeb

    IV Clinic for Lyme Treatment in London

    Yes they do but I don't have experience of it myself.
  6. yabeeb

    IV Clinic for Lyme Treatment in London

    Hi @adman888 Yes I have found them to be very good. I use them to supplement my treatment with KDM. They don't have the same experience in treating Lyme as KDM but Nikola is very knowledgable and one of his strengths is that he actually explains the course of action that he recommends. if you...
  7. yabeeb

    IV Clinic for Lyme Treatment in London

    Hi @minipink I see a Doctor in Belgium who prescribes the antibiotics I need - both IV and oral. Or there is a place called Augmented Health in London where you can get a prescription, if you are assessed as requiring them. If you want more info then drop me a private message. I'm happy to help!
  8. yabeeb

    IV Clinic for Lyme Treatment in London

    Thanks @Apple. You can do either - buy it at Himmunitas or buy it with a private prescription in UK. I bought mine in the UK as it was cheaper but it's worth shopping around as not all chemists charge the same amount.
  9. yabeeb

    IV Clinic for Lyme Treatment in London

    I thought it would be useful to let people know there is a clinic that can deliver IV antibiotic infusions for Lyme's Disease in central London. I have been a patient with KDM for approx 18 months after suffering with what I thought was ME for 7 years. I was finally diagnosed with Lyme's last...
  10. yabeeb

    Oral Antibiotics after IV

    Thanks Vojta. He suggested halving the dose but I've stuck with it and side effects are tolerable now I think. At least till I see him again in August. Gaik
  11. yabeeb

    Oral Antibiotics after IV

    Hi Justine Thanks for this. I've sent some emails so hopefully hear back soon. Sleep has settled and the rank taste is a bit better too but still there. My friend suggested not to stop if I can possibly tolerate it so that the bugs don't become resistant. I will persist for the time being and...
  12. yabeeb

    Oral Antibiotics after IV

    hi all I have just returned from12 weeks IV with KDM. He has now prescribed two oral abx - Clarithromycin and Tetralysal. Think this is standard. I started on Monday and am having hideous side effects. I can't sleep and when I do I wake frequently with nightmares. I also have the most...
  13. yabeeb

    Questions about staying in Brussels and clinic treatment

    Hey Justine! As you know I've just returned. The room gets pretty warm when it's a sunny day but I found it cool if the sun didn't come out and hit the windows. The air conditioner wasn't on at all when I was there but it was only spring. The best way I managed money was by getting a...
  14. yabeeb

    Tularemia

    I think he likes to know what co-infections exist. For me he said that the fact I tested positive for tularaemia was more evidence that I have Lyme
  15. yabeeb

    Tularemia

    Hey @justy I got the impression KDM doesn't think this is a big deal or difficult to treat so I'm not that worried about it. I heard conflicting stuff and that you can actually get it in UK.
  16. yabeeb

    Mutaflor 100

    Brill thanks@Thinktank and @SDSue
  17. yabeeb

    Mutaflor 100

    Hi. I'm in UK and been prescribed Mutaflor 100 but can't source it. I'm going Belgium in a couple of weeks for IV abx so thought i'd get them when i get there but just been told they aren't available there either. Does anyone know where i can get them or what alternative i can get till i can...
  18. yabeeb

    12 weeks IV antibiotics

    Thanks @Valentijn. Tried to persuade my mum to be my live in carer but she told me to get lost!!
  19. yabeeb

    Validity of Elispot LTT Lymes Test

    Ha ha. Oh well i'm stupid then....
  20. yabeeb

    12 weeks IV antibiotics

    ah OK. Thanks @Sushi No chance. My UK GP said he isn't getting involved!
  21. yabeeb

    12 weeks IV antibiotics

    Thanks @Daffodil What's Rx??
  22. yabeeb

    Validity of Elispot LTT Lymes Test

    Hi @Valentijn. I think its cos i sent him the following paper which states sensitivity of 84%: iSpot Lyme™: A New Generation of Lyme Disease Testing I think sensitivity and specificity are two different things. My Public Health colleagues tried to explain it but went over my head! :)
  23. yabeeb

    12 weeks IV antibiotics

    Hey thanks for the reply! I already know the risks involved but I've come to the conclusion i'm willing to take them.
  24. yabeeb

    12 weeks IV antibiotics

    There's probably loads written already on this but i don't have much time to read... I am due to start 12 weeks IV antibiotics with KDM in Belgium early March. Was just wondering if there is anything I can specifically do to prepare in advance?? #gettingnervous Thanks
  25. yabeeb

    Validity of Elispot LTT Lymes Test

    Thanks @Jonathan Edwards. In your opinion, does the combination of the Elispot test plus very low CD57+ and NK cells, increased IL-8 and MCP1 cytokines and a positive test for a co-infection (tularemia) make a chronic lymes diagnosis more plausible?
  26. yabeeb

    Validity of Elispot LTT Lymes Test

    Hi All I has a positive Elispot LTT test recently and there were other biomarkers which suggested Lymes including low NK cells and very low CD57 and lymphctyes. So i am due to go to Belgium for 12 weeks IV abx in March. However a specialist in the UK refutes the diagnosis of chronic lymes...
  27. yabeeb

    KDM Results

    Hi Justy I've done some digging with my contacts and apparently a private GP might be willing to prescribe some of the meds but not definitely. GPs only have to prescribe within their sphere of competence but it seems insane that you can go down to Boots and get the drugs yourself at the...
  28. yabeeb

    KDM Prescriptions

    Hi @maple Thanks - I'm being stupid - there is a translation in the actual report itself!
  29. yabeeb

    KDM Prescriptions

    Hi All Can anyone help me translate my KDM prescriptions please? what does the following mean? D-Cure amp. oraal 4 x 25000 IE/1ml DT n (with small circle after the n) amp oraal 4 x 25000 IE/1ml S/1 per week If this is for Vitamin D, could I not just take a supplement my GP prescribed (60...
  30. yabeeb

    KDM Results

    Hi Justy He just discussed the abx options and i said i would think about it. Have decided I want to go and do IV - ideally March to May - so if you happen to be over then let me know. I need to get accommodation sorted first though. I saw my GP and he is happy to sign me off but the only...