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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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I had all of these also. NKC activity = 4, for instance.
Erik was approved for Ampligen by Dr. Peterson in 1998. He couldn't get into the funded study because he could stand up part of the time, and he couldn't afford to pay for it himself.
So he pursued a different course, and within 6 months sent photos of himself from the top of Mt. Whitney (14,500 feet, 6000 feet of elevation gain) to Dr. Peterson and various other doctors.
Twelve years later, people are finally starting to listen. Judy Mikovits apparently has been great, for instance.
But Joey, did Dr. Peterson talk to you at all about mold even now?
Dr. Cheney at least has (just three weeks ago) sent out a letter to all his patients that they should look for toxic mold in their homes and move out if they find it (since remediation might not be enough to provide relief).
Hopefully eventually he'll understand that they need to leave their contaminated stuff behind, and then they'll start making real progress on the other treatments they're trying.
At least the acknowledgment is a start though.
A few more comments about AMPLIGEN from my research and experience:
1. Ampligen works. Dr. Peterson's consideration of the age of the patient is something very few talk about, and I am elated he did with you. To me, stem-cell therapy in Panama would be the last resort for a young man like you- and only AFTER you'd given Ampligen a good shot. I say this only because of my own research- I have personally communicated with almost a dozen patients who have been or are on Ampligen now, and just like you said, none has died, none got worse, and almost all got better. Yes, there are a few who have had to go back and get "boosters", like our dear friend Mary Schweitzer, but I know three of the original 1991 group of patients who have lived almost 2 decades of "normal" lives after their treatment on that first "trial"- an have needed no boosters.
As for transmission, his hypothesis is that its like other retroviruses: sexually transmitted and germ-line transmitted (generation-to-generation).
I don't know how many of the 10 were XMRV+ but I assumed that was their rationale for taking it. I also don't know the duration.
I heard from Daffodil that Jamie does not suffer from cognitive issues; I wonder if this will be a way to differentiate outcome with ARVs? I definitely have cognitive impairment, and it seems the majority of CFS patients do as well.
My NK cell absolute count is 40, the lowest it's ever been, and my lytic unit 30% (measure of NK cell cytotoxicity) is 2, also the lowest its ever been.
The coffee enema just flushes out the colon, intestines. It's obviously theoretical why this would help with flu-like symptoms. I have done coffee enemas for gallbladder/liver digestion, but water enemas are just for flushing and helping with the gut inflammation. Some speculate that it may help the immune system since 70% of it is in the gut, but I'm not gonna go out on that limb.
"Very interesting is that another cell that appears to be a reservoir of XMRV other then fibroblasts within tissue stroma are tissue macrophages The pulmonary alveolar macrophages were absolutely loaded with XMRV virus and other tissue macrophages could also be a potential reservoir in other tissues as well, especially in the GI tract, sex organs and sinuses."
So sorry I missed your post.
Peterson didn't recommend any tests for gut function. I did the Metametrix analysis last year and it was fine, was thinking about re-doing it but it's 400 big ones