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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. G

    Experiences with Homeo KMAF?

    Late to the party here, but wanted to describe my experience w/GcMAF & MAF 314. When I started injectable GcMAF, I definitely developed IRIS, but it did not move my nagalase or calcitriol levels much, if at all. Eventually, I stopped taking the injectable, as I was feeling nothing from it, and...
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    Low dose Naltrexone

    Sushi, I haven't posted here for awhile. I stopped LDN awhile ago without any noticeable repercussions either way. I was taking 4 mg along w/other sleep meds. I'm just curious - have you changed your sleep regimen? Do you take other sleep meds, because I recall you saying LDN gave you the...
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    Low dose Naltrexone

    Sushi, when you got to 4 mg and found you could sleep through the night, weaning other drugs, were you on a benzo? I'm at 4 mg and was sleeping pretty well, but I'm now trying to wean clonazepam and having an extremely hard time doing it. Even a 1/4 mg makes a huge difference in sleep quality. I...
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    Low dose Naltrexone

    Skips is definitely the best as they use a different variable release filler that allows for quick release. My old, local compounder used a calcium filler, which likely delayed the release. My doctor called in a prescription for 1 mg pills, with the notion that I would be working up toward 3-4...
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    Low dose Naltrexone

    brand matters Sushi, your experiences have been most informative. I had worked up to 3 mg LDN last year, but went off of it because of concerns about GcMAF. I spent a year on different forms of GcMAF and never really got a clinical response, bad or good, other than some mild IRIS at first...
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    Low dose Naltrexone

    Sorry for the delayed response Penny, but I couldn't log in. To be fair, I'm not exactly sure what he meant, but he originally thought that cytokine swarms in the brain could be causing my sleep disturbance and that LDN could help block them. But, I think he's more interested in getting to the...
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    Low dose Naltrexone

    Nighttime dosing We've been having thunderstorms at night, waking me up around midnight to 3:00 am, so I've been trying the dosing then to extend sleep, and it didn't help. In fact, it made me feel worse. And while I think going to a higher dosing regimen makes sense for some people but...
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    Low dose Naltrexone

    Later Administration Does anyone take this stuff later, like when they wake up in the middle of the night, and, if so, is there a net or extended benefit? Thanks.
  9. G

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

    antivirals and GcMAF undcvr, how long were you sick before you began the Valcyte, and are you taking it with GcMAF, because I thought anti-virals were generally contraindicated with GcMAF according to Yamamoto's original work? Thanks.
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    Low dose Naltrexone

    One more thing... I've read that network spinal analysis can evoke the same endorphin release effect, though not if you want it in the wee hours of the morning.
  11. G

    Low dose Naltrexone

    LDN and weight That's a good point about weight, though I am tall and thin too - an almost 6'3", 150 lb male; hence the surname. He just told me to go on 1mg for a few weeks then move up to 2 until stable and then 3. Each time I had an immune flare. While a disrupted sleep architecture...
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    Low dose Naltrexone

    Sleep That's great Sushi! I definitely have a solid block of sleep on LDN, but I always wake up early and cannot, for the life of me, fall back to sleep. It doesn't matter what time I go to bed; I always wake up around 5:15-5:30. I get 6-7 hours, max. I am steady at 3 mg, along with a litany...
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    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    LDN & GcMAF I take LDN for sleep, along with some other meds. Does anyone on here doing the combo (or their doctors) feel like LDN inhibits GcMAF? I know narcotics and antivirals might, but LDN is not really either one of those.
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    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    apheresis Sergio, back in December you had discussed the use of apheresis with white blood cells from a young, healthy donor matched for blood and mismatched for HLA-type to bypass a less sensitive VDR genotype and enhance GcMAF's effectiveness. Have you pursued this further or discussed it...
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    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Benign positional vertigo Just wanted to add that benign positional vertigo was a "classic" symptom of the mid-80's Tahoe epidemic. I've had it off and on during the course of different therapies, and my doctor thinks it's XMRV or HGRV-related activation.
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    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Cindy, can I ask what your hours of sleep are? Also, you said you take 20mg klonopin? Is that correct? That seems like a lot. Interesting that you, your husband, and Lou have taken BGLI's product either IM or IV and have had pretty amazing success.
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    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Prolotherapy Cindy, is this the prolotherapy technique or something else? Also, do you take anything else for sleep, and did you or your husband know your VDR BSM and FOK polymorphisms? Many thanks in advance.
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    Low dose Naltrexone

    Sleep cocktail So, Sushi, you are on clonazepam, ambien, and LDN, but nothing else? I tried ambien, but really struggled with it. A lot of lucid dreaming and feeling like I was awake the whole time. Can I ask what dosing regimen you use besides the LDN? I am still not stabilizing on the LDN...
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    Low dose Naltrexone

    kefir I drink a harvested coconut water kefir made by inner-eco. It's about $10 for a month's supply. I've also had kimchi suggested to me as a wonderful probiotic/gut tonic. Thanks for the prompt reply Sushi. Do you recall feeling woozy/hungover when you first started taking LDN and, if...
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    Low dose Naltrexone

    ?? for Sushi Sushi, I am new to the forums, but not new to CFIDS (18 years and counting). I am reasonably functional on some days with the help of a great physician, but sleep problems have modulated my illness for years. I have been on a litany of drug combinations and have rarely succeeded...