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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. wishing well

    Autopsy findings: Summary of discussions

    There are a good few of these studies, but i forget the main man https://www.lymedisease.org/lyme-spirochetes-autopsied-brain/
  2. wishing well

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I am a beginner in imagery but even i can see that there is defo something wrong and yes sounds like what you said. Suggest you go to a forum who can tell you more and get expert neurosurgeon that they on forum might be able to suggest
  3. wishing well

    Chichester, Sussex meet up

    I am arranging a meet up for this area, if anyone is interested please get in touch. Will be soon. Not sure if this is the right section of the forum, so please someone let me know if it would be better somewhere else.
  4. wishing well

    Antibiotics with KDM

    Hi I haven't been on here for ages. Been off tx'ing lyme. I have Cpn and Yersinia too. From what I understand KDM doesn't have v good testing for lyme, bartonella and babesia. But Yersinia , I think right in saying , is tick transmitted.
  5. wishing well

    Quorum sensing, biofilms and the future

    Here is a link to this subject. It is only available for a day or two. It does laast half an hour or you could skip to 15 mins in. It is about the future direction for fighting infection. Absolutely fasinating, but of little use for us atm. There is one mention of either garlic, or an...
  6. wishing well

    Soya milk tastes rank!

    Yes I was surprised you said that about the almond milk - snow. I just tried the almond and I liked it, almost didn't notice the difference bet real milk. So maybe you did get the vanilla one, I don't think mine had vanilla. Come to think of it I may well have bought the Sainsbury's one if I...
  7. wishing well

    Soya milk tastes rank!

    Me too - about to go dairy free for a week or two. Just went to Sainsbury's and they sell hemp milk there. I agree the soya brands vary enormously. I don't like the rice - but I have tried oat milk, not so good in coffee, but fine in my porridge . So I bought the almond to try.... I found the...
  8. wishing well

    What specific EBV and other tests are doen before adminsitration of Valtrex, Famvir, etc.?

    I dont think you are in the uk, like me. But if its any help mine was the testing for titres. I have high titres to EBV & CMV. About 260 ish i think. I have done6 wks valtrex, a break, then 1 month aciclovir, now on imunovir for i month, then back to valtrex for 2 mths. All the while doing...
  9. wishing well

    A Tribute To Rich Van Konynenburg

    I would like to express my condolences. I had not been in contact with Rich, but have read many of his very helpful posts. It is so kind of people to help strangers, with their knowledge and time. Rest in peace. x
  10. wishing well

    EDTA question on amounts

    Hello John Many thanks for your reply and two links. Have had a look at both. It seems i must dig out my K2 from the back of the drawer where i had put it thinking dont need any blood thickener. wwxx
  11. wishing well

    EDTA question on amounts

    Hi xrunner Thanks for reply. Lots there to think about and a lot to read. Yes the EDTA may be a matter of risk/versus benefit. I shall look into it more and the alternatives which you have put here. I dont get on so well with herbs/plant based things. But the K2 i had a quick look at - yes...
  12. wishing well

    EDTA question on amounts

    Hi Charles Thank you so much for replying. I have read your thread and realised you take the suppositories, but presumed that that was as well as orally during the day. Obviously not. :rolleyes: I had not got round to buying them - so much to do and so..............incapacitated. Thanks...
  13. wishing well

    EDTA question on amounts

    Hi Sushi Thanks for the welcome and the reply. I had a test with my gp some years ago, but they were not the ones asked for as per the hughes website. Recently she has agreed to re-test and has i think added in the one missing from before ie the lupus coagulation one. Not sure if i could...
  14. wishing well

    EDTA question on amounts

    Hi xrunner I think? i just pm'ed you cos we've "met" on FF. (It may be that i pm'ed myself - Ha). I am soooo grateful for all your advice and that of E***'s, also on FF. Because of your advice i have - bought andy cutler book AND prioritised mercury removal and realisd about biofilms AND...
  15. wishing well

    EDTA question on amounts

    Hello everybody My first post! :) I haven't got round to doing an intro yet - been so busy lurking here and researching and getting tested and getting ready for tx. Anyway have some a/v and abx tx coming up (Vatrex and Doxy) - starting in couple of weeks. Got mercury out now and done two...