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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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Protocol for ME/CFS induced by herpes veridai viruses

godlovesatrier
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Hi all, I felt really good yesterday on the valtrex and woke up thismorning feeling even better. Although I woke up at 5.40am first and had to eat something so I could sleep. But other than that had 10 hours sleep and only woke up once or twice. Once the valtrex dose wears off you really...
godlovesatrier
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Hello, So my symptoms all came back as soon as I stopped the Famvir :( Fatigue came back, PEM came back, I even crashed for about half a day (overlap of re-arranging the living room one night). So I spent 2 days trying to find novartis famvir, which is either discontinued - unable to purchase...
godlovesatrier
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Yesterday I moved Famvir to the AM (9am) and took 750mg. 750mg lasts in blood serum for 13 hours, so that's plenty to get through the day, of course it's below the IC50, but I cannot sleep if I take any after 9am, and if I go below 500mg a dose it simply isn't active or effective enough. Long...
godlovesatrier
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I'm definitely starting to notice less fatigue from little trips out and haven't really suffered from any PEM for a few days (the PEM would normally be mild, or if I had crashed it would of course be a lot worse - even if the crash only lasted 3 days which was common with the joshua liesk...
godlovesatrier
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So I restarted and it's now day 3. Too soon to really tell if it's overall going to help or not. The drug makes me feel whacked, I wake up feeling pretty good on the whole, maybe even a little bit more well each day? Hard to say yet. I still get quite a bit of mucous and phlegm at the back...
Stopped for 24 hours. Infection in throat/neck much better but still comes back in the evening so definitely not gone. I've got antibiotics on the way but won't receive for a week. This is very similair to my June throat infection. The difference being that one was fungal I think or candida...
godlovesatrier
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Famvir summary for those who need a quick review: Positives so far: my canker sores of about 4 years seem to have vanished in the last week, I've drank fruit juice (cranberry), eaten crisps and I have had spicy foods and all sorts - even had some pizza! I have yet to experience a single...
godlovesatrier
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So I've been re-reading the old lerner threads and anything I can get my hands on to remind myself how the drug works and theories etc. It occured to me last night that taking an immune modulator with valtrex would surely speed up the entire process? Yes the patient would feel even sicker...
godlovesatrier
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So this is day 5 of my famvir trial. I went up to 250mg twice a day yesterday. Still quite strong flu like symptoms but they come and go and are not persistent. I've only had one fever on day 3 which occurred after dosing not before. Today I feel slightly similar in that I am a bit hot again...
godlovesatrier
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I have stopped taking reishi and oat bran and replaced it with famvir. Today is my third day on famvir and I am tolerating it much better. Am still experiencing herx like symptoms or rather ME symptom exacerbation. Experienced cold like symptoms today, raised body temp, blocked stuffy nose...
godlovesatrier
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Haven't been doing too well recently. Tried Inosine for 2 weeks at various doses, pretty much ruined my sleep and even at lower doses still did the same. Was facing and dealing with heightened ebv like symptoms in the throat etc and sore throat a lot more often with Inosine, although fatigue...
godlovesatrier
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Been looking back at prior blog entries lately, this one specifically: https://forums.phoenixrising.me/blog-articles/still-on-half-joshua-leisk-protocol-flu-jab-time.2889/ I can't believe I was out walking 3 times a week back then. I wasn't taking any green tea, no bcaas's, just probiotics...
godlovesatrier
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So I've been on Inosine 2 weeks now. The first 2 days I took 500mg which instantly made getting to sleep and staying asleep almost impossible from day 1. I reduced to 100mg and continued at that after a 2 day break. I noticed this dose was more tolerable and as time went on I didn't need to...
godlovesatrier
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Inosine week 1 must be day 5 now. 500mg down from 1g first two days. It seems to be working on the whole. But almost impossible to get to sleep totally reliant on nytol which is really bad. Secondly it's totally dried my mouth out meaning I've started to get another ulcer. But this should go...
godlovesatrier
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So I am now on the joshua lieks protocol but I've more or less replaced oat bran with Inosine (500mg twice a day or 1g twice a day in alternating schedules and all weekends off + a 2 week break every 3 months). So far I feel better and it's only been 24 hours. I felt fluey, achy, nauseaous and...
godlovesatrier
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Been awhile since I posted. Haven't been very well since January really, very up and down. But still able to do a lot more than any previous winter. The oat bran is definitely causing neutropenia, because I've had 3 blood tests confirm this now. If I lower the dose they go back up, if I...
godlovesatrier
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So I got my latest blood test results and they showed my neutrophils had tanked again. From 2.6 to 1.8 in just 14 days! And this had to have been due to the oat bran I've been taking. I've gone back down to a maintenance dose of 1 tsp a day. 1 tsp had pretty negligible effects on my neutrophils...
godlovesatrier
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Hello, Continuing down the self experimentation route I've moved onto increasing my dose of Lactoferrin after a chat with Jaime and taking mega igg which is a very expensive bovine serum dairy free igg product. My igm was low in 2016 but I've no idea if it's better now or not. I'm paranoid...
godlovesatrier
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So I tried Hesperdin last week and yesterday. This stuff blocks ACE2 receptor attachment and is hepaprotective. However I'm allergic to most fruit and hesperidin is from citris fruits (but it's in most fruits). I had delayed diherrea the first time and second time an allergic reaction...
godlovesatrier
2 min read
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So since I started taking every on Monday I'm feeling very different. I think the oat bran has done the heavy lifting to be honest, but b12 and glutathione top up (I only took 1 and 2 1/4 doses) did also help a wee bit. I think this more or less proves to me how vital the oat bran is. This is...

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