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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. szenn

    Antibiotic Ketek. Would you?

    Hi Justy, i took Ketek for two months about 18mths ago. i can't remember it being any worse than any other antibiotic i took. I see KDM too
  2. szenn

    1.5 years after treating lyme and i think I have a relapse

    I have been seeing a doctor for my Lyme for 17 months, I have very good periods and relapses. I think treatment can years, or so my doctor tells me. Feel free to ask any questions.
  3. szenn

    In Belgium to see KDM

    I am so glad you are progressing Clod. It is reassuring to know there is hope for us all. To be honest, I felt heaps better after having a name put on what was wrong with me. I felt mad in the first months of my illness and everyone around me thought likewise. It still is a struggle, I work...
  4. szenn

    In Belgium to see KDM

    Hi I thought I should give an up date. It has been 17 moths since I have been on treatment for Lyme disease. The first 9 months I was on combination anti biotics and since July 2014 I have been on Banderol and Samento. I have had some really good months, particularly from August until January...
  5. szenn

    Samento - 7 drops too far?

    hi clodimir can you send me the instructions. my nephew can translate the french. thank you
  6. szenn

    In Belgium to see KDM

    Hi I have been on antibiotics for 11 months and my LLMD has now switched me to a Samento/Banderol regime. I have lyme, chylamydia pneumonia, mycoplasma and suspected Bart ( not a lot then!!) does anyone have experience of these herbs? Do they help with Bart too. Any advice greatly appreciated.
  7. szenn

    I am booked in to see Prof. de Meirleir in January

    Glad to hear here are some improvements snow, sorry to hear about the lack of success with the abx. would the intravenous abx be better for you
  8. szenn

    In Belgium to see KDM

    I saw that you are back on Clarithomycin. Did the doctor treat your gut?
  9. szenn

    In Belgium to see KDM

    I am sorry to hear that snow, did you never feel better? How are you feeling now? better since being off? What has e suggested to you?
  10. szenn

    In Belgium to see KDM

    Been on treatment now for nearly seven months. My symptoms in the last week seem to have got worse. Is this normal. I am seeing KDM on Tuesday
  11. szenn

    In Belgium to see KDM

    That's a shame. I started this thread so we could all learn about lyme disease and KDM's treatment of it. We need to learn off each other. and pm's are all very well but i would not known about lyme or kdm if i had not seen snow athlete's threads here.
  12. szenn

    In Belgium to see KDM

    This thread is about Lyme disease and KDM
  13. szenn

    In Belgium to see KDM

    she is doing very well indeed
  14. szenn

    In Belgium to see KDM

    My daughter seems better. It is hard to say with me. I have been on treatment nearly 6 mths now. Some days are good others not so. sleep is still disrupted but i do manage more than before. feet burning less. hands till hurt periodically . KDM was very vague when i last saw him
  15. szenn

    In Belgium to see KDM

    how are you now snow?
  16. szenn

    In Belgium to see KDM

    He didn't say that to me. He said the drops were not addictive. but I never took them in any case. I try to minimise the drugs I take.
  17. szenn

    In Belgium to see KDM

    sorry bea i don't know what my markers are
  18. szenn

    In Belgium to see KDM

    Oh, I was on doxy and clarithomycin and now i am on ketex
  19. szenn

    In Belgium to see KDM

    update? Just wanted to say firstly, Happy Christmas Secondly, how is everybody? Have not heard how treatment is going with ; Snow, Sushi, Clodomir, Orchid, Lymelight, Cigana, vojta (?) etc sorry if i have left people out. I have been on treatment for nearly four months now. My daughter 1 month...
  20. szenn

    In Belgium to see KDM

    The front of my shins are killing me. Is this a herx?
  21. szenn

    In Belgium to see KDM

    Has anyone read Burrascano's Lyme treatment guidelines? Apparently all the top US LLMD's follow it? http://ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
  22. szenn

    In Belgium to see KDM

    I think it is reassuring that he wants to see you often. He asked me to see him again and I wasn't charged anymore money
  23. szenn

    In Belgium to see KDM

    I spoke to KDM yesterday on the telephone. I asked about biofilm breakers. He said yes, he does use them but not at the beginning as the cyst form only account for about 3 percent of the bacteria.
  24. szenn

    In Belgium to see KDM

    Have you spoken to kdm
  25. szenn

    In Belgium to see KDM

    Thanks for that Sushi. as i mentioned to you before, i am not on a lyme doc witch hunt. i really like kdm but we have to stay objective about treatment. i am glad people have good experiences of him, just wish i had the knowledge to be more discerning when people like athene tell me negative...
  26. szenn

    In Belgium to see KDM

    i have both these too. kdm or american lyme docs they say. join a face lyme face group page. gotta dash to work now but ill post it later. there is a host of advice on US lyme docs mostly. and ones that are credited or acknowledged as having cured lyme. they dont know much about europe/aus...
  27. szenn

    In Belgium to see KDM

    Of course this begs the question of whether KDM uses biofilm breakers, anybody know? Just went on a Lyme forum and was told that Doxy causes the bacteria to change to cyst form. and I am on Doxy Plus met a user who is also a member here called Athene, who told me she was a patient of KDM and...
  28. szenn

    In Belgium to see KDM

    If Lyme is treated within six weeks, with a two-month course of the antibiotic Doxycycline, it can often be cured: beyond this time, it becomes disseminated around the body and has to be attacked with an array of antibiotics for months or years. I saw a source that suggested an estimated...
  29. szenn

    In Belgium to see KDM

    I'll order it, thanks I'm Blackheath way. Where do think you got it
  30. szenn

    In Belgium to see KDM

    That's what I like to hear. Thanks Cigana Where you from in the UK