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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. Daffodil

    Is/was there anyone here who has had cranialcervical surgey?

    I will say one thing. Unless Dr. Bolognese or Dr. Goel says you have CCI, do not mess with your neck. I made that mistake and will pay for it forever - in spades. On top of still dealing with ME/CFS. Be very careful joining those groups too because, as all groups, it will become an echo chamber...
  2. Daffodil

    My gigantic story going back to 1996, please read this, treatment plan included!

    since some studies imply that FMT does not work as well if you have fungal overgrowth, and since you were on powerful antibiotics for so long, could it be that you have fungal overgrowth? i have heard some anecdotal reports about kids with autism not improving much with FMT until they first...
  3. Daffodil

    Comment by 'Daffodil' in 'Seed Probiotics – After one month, Persistence may occur'

    did you continue? what happened?
  4. Daffodil

    Ampligen Experiences

    For those of you not on Facebook, I really wish you would try to check it out because there are several stories of remission using FMT. Of course, as usual, there are stories of remission with everything and the kitchen sink lol But this poop thing is different.
  5. Daffodil

    Ampligen Experiences

    lol that is a very very long story. but to be make it brief, i first ordered from microbioma.org to see if i felt anything. i did. so i knew this could be something big. then i ordered some more while i eventually found a local donor. there are a lot more details but you can join the FB FMT...
  6. Daffodil

    Ampligen Experiences

    Just wanted to update you guys. 8 weeks into FMT, I am starting to feel markedly better. Yesterday: was able to cook 3 dishes and clean. Today: not too much payback. I expected it to start at the 3 month mark like last time but this time, I am noticing it 2 months in
  7. Daffodil

    Ampligen Experiences

    "didnt wanna talk about it anymore" LOL figures. people just dont wanna deal with anything difficult that takes up time and is controversial. can you blame them? almost every doc who went into me/cfs crashed and burned. Lipkin with the lawsuit...Montoya fired from stanford....Govt trying to...
  8. Daffodil

    Ampligen Experiences

    Canada's healthcare system is so destroyed and useless now and healthcare costs so high, Canada has really stepped up to the plate for people like us with chronic illness: they have made assisted suicide easily accessible. So that is just wonderful of them. No more disability payments, no...
  9. Daffodil

    Ampligen Experiences

    I cannot believe how many long covid people there are, echoing the exact same things we were decades ago. I hear them telling stories of things they have tried, doctors who dismiss them, family who doesn't support them etc etc. It is like deja vu for me, from 30+ years ago. I cannot believe they...
  10. Daffodil

    Ampligen Experiences

    @hapl808 FMT remission stories are varied. There are several who report 90-95% cure and they never have to do anything again. Others report being able to live normally again as long as they do occassional "booster" FMT's. Some have to do boosters if they get extra stressed, after sickness, or...
  11. Daffodil

    Ampligen Experiences

    hi guys! for the MOTHERLOAD of FMT information, please join the facebook group: https://www.facebook.com/groups/1676427302597468 FECAL MICROBIOTA TRANSPLANTATION (FMT) the one with 6.5K members. @hapl808 I was confused about the whole brain retraining thing for years. Intelligent...
  12. Daffodil

    Ampligen Experiences

    if anyone is interested, i am doing fmt and feel like i am on the right track. several in remission or cured using this method in the facebook groups.
  13. Daffodil

    Ampligen Experiences

    Hi Henry. Mary says there are not many people getting it at Petersons but I don't think he is taking patients. When she emails next, maybe I can ask if she can put in good work for you
  14. Daffodil

    Ampligen Experiences

    oh chit. I forgot Dr. Enlander comes to this forum heh
  15. Daffodil

    Ampligen Experiences

    Hi Henry. My friend reminded me that he had already told me about Enlander and I just forgot lol. My brain is like a sieve thanks to the illness. Mary just replied and she is getting Ampligen through Peterson. I asked if there was some way you could also get it and am waiting for her reply...
  16. Daffodil

    Ampligen Experiences

    Well that was weird. Just googled Enlander and got an eyefull re: lawsuit from his housekeeper claiming he and his wife enslaved and sexually abused her. geez
  17. Daffodil

    Ampligen Experiences

    Hi Henry, I communicated with Mary last in 2019, I believe. I just tried emailing her and will let you know if she responds.
  18. Daffodil

    Ampligen Experiences

    @HenryBSilver have you tried contacting Mary Schweitzer? Dr. Enlander perhaps?
  19. Daffodil

    Ampligen Experiences

    @HenryBSilver i assume you contacted the drug company for doctors names?
  20. Daffodil

    Ampligen Experiences

    Hi Henry. I have not looked into Ampligen for many years but I just did some googling. It appears that there is a cost recovery open label trial in Incline Village right now, with Dr. Lapp. https://classic.clinicaltrials.gov/ct2/show/NCT00215813
  21. Daffodil

    My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT)

    Labcorp has many of those tests. Some I had done years ago through my then specialist, Dr. DeMeirleir. You can also order one of those 16s stool analyses...GI MAP, GI360, Genova, etc etc. I think GI MAP is even covered by some insurance companies. You can use RedLabs too....they have an office...
  22. Daffodil

    Incredible improvements with Helminthic Therapy

    @BenFromNZ any updates? what people say....dont expect improvements for 3 months...some take 2 yrs...exactly what i have found with FMT. a couple of people in other groups are urging me to try helminths so i am curious. i havent found THAT many improvement testimonials with helminths...
  23. Daffodil

    My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT)

    there are online success stories. the occasional ones are from a clinic or DIY from online sources but i get the feelinig most are when you use close family as donor. i will PM you
  24. Daffodil

    My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT)

    one woman came in the group saying she keeps autoimmune in total remission with carnivore+FMT
  25. Daffodil

    My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT)

    there are many clinics worldwide you can go to now where you can get antibiotics and then FMT but no point if it won't engraft. even barody, who uses antiseptics to wash out colon, is getting mixed results. maybe fraxel laser, which can remove top layer of membrane will be tried one day...i dont...
  26. Daffodil

    My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT)

    @hapl808 i would be optimistic. our enemy is drug companies and their ruthless pressure on the FDA to stomp out FMT within europe and N America. it worked. my hope lies in Chinese research, which is moving quick
  27. Daffodil

    My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT)

    this makes all those protocols like trevor marshall, wheldon, etc etc all make sense. that is why it was helping..not because of some mycoplasma or w/e....changing drugs, you would eventually hit on some that help with the microbiome issue. most of those protocols just keep cycling the meds. the...
  28. Daffodil

    My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT)

    no because i was on iv azithro, iv doxy, iv amox, and others, plus oral pills too for yrs and yrs. i did not experience remission with them. after 4 yrs of oral i did experience some increases in energy. it depends what kind of overgrowths you have and when you are lucky, some drug targets that...
  29. Daffodil

    My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT)

    https://cfsremission.com/2019/07/14/a-short-me-cfs-mcs-remission-with-microbiome-samples/