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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. K

    Just found out I have active lyme disease. I am stunned. Help!

    Hi Mog, Ah yes, the 30kDa band seems to relate to European strains of borrelia so being in the UK makes sense. Don't bother being retested (if you're thinking of retesting before finding LLMD). The test you have done clearly says that you have lyme. Only a handful of people with late stage...
  2. K

    Just found out I have active lyme disease. I am stunned. Help!

    Hi Mog, You have lyme disease. Don't mind the Igenex and CDC negatives, I'll find you the literature on why they don't apply tomorrow, I have to go to bed now. CDC requirements for a positive test are for surveillance purposes only. Never to be used as diagnosis. Its very very very very very...
  3. K

    Just found out I have active lyme disease. I am stunned. Help!

    I found a post: a different one than I had read before - so quite a few people are saying it http://forums.phoenixrising.me/index.php?threads/lyme-disease-and-xmrv.528/ "Anyway, I wanted to chime in on the Post-Exertional "Malaise" symptom. It is true that it is not necessarily associated...
  4. K

    Just found out I have active lyme disease. I am stunned. Help!

    Hey, I don't think that PEM is a classic lyme symptom, although I have been wondering the same myself. I've heard it said that it's not, and that if you're a lymie with PEM you have a babesia infection. It's the babesia that causes PEM, I gather probably because your red blood cells can't...
  5. K

    MAF 314

    Hey, Thought I would post again. Sorry I haven't been more involved in this thread, my laptop has been down and I only get onto the internet every so often now and brainfog stops me posting! I had a really bad week Christmas week. I had been having good days and bad days but about three or...
  6. K

    The Wright Stuff - UK TV discussion about ME

    http://www.youtube.com/watch?v=oywhxD6mEyc&feature=youtu.be Here's the youtube link. It was quite good to see, fair play to them for doing it. Pity there was no mention of there was no mention of the Norway study though - it would have been far better to have that said then the part about the...
  7. K

    MAF 314

    Just thought I would post quickly. Have just finished making my third batch today. It's going well, have been doing pretty good lately but can't exactly attribute to any one thing. The MAF does make my tongue tingle while I'm eating it. Have been sleeping better etc. I agree with Rita...
  8. K

    MAF 314

    Hi, No problem. I have no real idea of the science behind it, its beyond me at this stage but I think that whatever makes the 'MAF' effect must be itself beyond the ability of just 're-culturing'. Dr. Konig said that after 8 weeks you need to start afresh, so I presume that some of the...
  9. K

    MAF 314

    Hi all, I was in Vienna last week learning the MAF 314 technique from Dr. Uta Santos-Konig. It has taken me till today to buy the bits and pieces needed to make it (bowls, jars, etc.) but I will be starting the process for myself tomorrow morning. It seems simple enough - although I was lucky...
  10. K

    Since your ME/CFS onset, have you caught the Cold & or Flu more or less frequently?

    I haven't had a cold or flu in a long long time. My M.E. onset was periods of little consciousness, I would literally just fall asleep for three or four days straight, It felt very virus-like but not like a cold or flu at all. I think I haven't had a cold because my immune system is overactive...
  11. K

    MAF 314, looking for someone to share

    Hi, Does anybody have a link to Dr. Cheneys MAF 314 trial results actually? How did M.E. patients respond to it compared to GcMaf?? Thanks
  12. K

    MAF 314, looking for someone to share

    Thank you Rita, Wow this could be good.
  13. K

    MAF 314, looking for someone to share

    Hi Rita, Is MAF 314 available in Europe?? Or is this a translation thing? Thanks
  14. K

    App with KDM

    Hi everybody, Thank you all for this thread. It has been very helpful. I am due to see KDM at the end of this month, I was wondering if anyone had some advice on hotel arrangements? I have looked at the Eurostar, but as I am travelling with family they would like to stay somewhere in the city...
  15. K

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Hi Lobba! Do you think that KDMs GcMaf is of good enough quality? Is it the same as Dr. Enlanders? I ask because I am due to see KDM for the first time at the end of November with the intent of starting GcMaf, but the money situation is what really worries me. (I can't afford to waste!) Many...
  16. K

    CDC Spends Millions on Hollywood Scripts, Posh Fitness Clubs & More

    "The CDC had no comment other than to say its policy is to let situations like this play out in the criminal justice system." Wouldn't surprise me at all. The CDC probably pay for her lawyer also...
  17. K

    CDC Spends Millions on Hollywood Scripts, Posh Fitness Clubs & More

    this is really sick. " she oversees $1.5 billion in funds that are disbursed across the agency". how can people this sick in head have that much power?? i bet weasel has some dark dark secrets also, he looks the sort. torturing animals as a child at very least.
  18. K

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Rituximab B cells Enterovirus? Hi everyone, very interested to hear the discussion on a great study, good things to come I hope. I'm new here but I have been following the forum for quite a while now. I had had a bad relapse and writing just hasn't been an option for me...
  19. K

    Hold the CFSAC (etc.) accountable

    Hi guys. Does anybody know whats going on with this? or what will happen? Surely "Chronic Fatigue Syndrome" can never hold up since the Norway chemo trials?
  20. K

    Norway's Directorate of Health Apologises for Treatment of ME Patients

    Hey guys, this is fantastic news really - a major breakthrough. Weasel and his little buddies should be jailed for life, and that is probably too much kindness to be showing the little rat of a man. Alas, what are the chances? Can anyone tell me where I can find out about putting my name...
  21. K

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Good idea! - as I have seen quotes from this forum being used in British news reports before. You can imagine - "even M.E. patients think that Norway's chemotherapy trials are 'crazy'"
  22. K

    App with KDM

    Hi Athene and everyone else, sorry to hear that you had a bad time under Dr. De Meirleirs care. Worrying actually, as I have my first appointment with him at the end of November... I was wondering what type of treatment he usually suggests? And what do you think might have caused your relapse...