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Purported cure for Latent Virus sustained ME/CFS by Joshua Leisk and Aline Nocon

Messages
20
Location
Miami
Hi,

I have tried to find a good place to share my results of this and to communicate with Joshua and possibly get some feedback on my lack of success with the HADS ME/CFS protocol 3.2. This will be the short version and if anyone has any questions I will be glad to assist. I went from my best health in 10 years (70%) to the worst (20%) starting in October (lots of stressors, divorce, having to move because of divorce, having lost my job due to COVID, COVID, and of course ME/CFS). I had a a large panel of infectious disease labs that seemed to show possible re-activated EBV and CMV as well as Coxsackie (which Joshua mentions as a possible contraindication). My CFS has had a long history with EBV, so I was put back on Famvir and when I found Joshua's protocol I was excited after reading the results of some other people, as over the last 10 years my best progress came after I did an FMT which reactivated my immune system causing the one night of night sweats of bad that the bed was soaked, but overnight I went from 30% to 60% and have been bouncing between 50 and 70% for the last 2 years. Since my health was so fragile, I was afraid of doing the 3 day fast and first I had to stop caffeine. It took me about 6 weeks before I felt I was in a place to try the fast, I bought all of the correct supplements and dosages. I had already been doing 10000iu of Vitamin D for 2 months. and had been taking Live Extension multi and additional B12 and 3x a week additional active B from LE.

For the fast. I was surprised about how I did not feel as hungry as I expected to. The diarrhea and the inflamed rectum were quite unpleasant and I was wondering if there was a better way to do that or trying to understand the reason behind inducing diarrhea. I got through the 3 days and I was feeling weak, but I had been feeling worse a month earlier without fasting. The one main negative from the fast is it negatively impacted my sleep such that I had gone from 8 hours to 6 then 5 then 1.

I was looking forward to Day 4 but having had little sleep the night before, I was hoping some food and coffee would perk me up and give me back a little energy or that I would start having immune system reactions, feverish, sore throat, night sweats. I was already feeling awful from lack of sleep and lack of food, but I could discern no other differences in its effects. Day 2 after, I took more sleep drugs and slept a little better but still not immune reactions. Now 1 week later, I am basically where I was before I started having gotten my sleep better but not back to where I was before. I have added back in inosine and Famvir to the supplements recommended by Josh and my plan is to continue on the Reish, Oat Bran, and Lions Mane.

With regard to the EBV and CMV titers. I have had them measured many time over the last 10 years and I have never found a good correlation with them to how I am feeling. Regardless, I think the key to all of this is getting the immune system to do its job better which might not be the key to ME/CFS as there were many years I had ME/CFS and PEM but was able to function at a near normal level. My crash 10 years ago was from trying to run an obstacle course race which left me with near 0 NK cells and near 0 NK cell activity. I think it takes potentially years to recover from that assuming you can eliminate all stressors.
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
I've been on this protocol for ten months. It's not as simple as it appears to be. I could write an essay on the protocol.

I'm currently struggling to get PEM free. I can't be sure if it's the moderna vaccine, the lowered beta glucan intake due to neutropenia or something else.

Firstly oat bran 14g per day causes neutropenia. It seems to use up the neutrophils way too fast. I've reproduced this twice and had 4 blood tests at various doses. So I'm certain this is true.

Egcg seems to lead to adrenal fatigue. But if I stop the lowest dose 90mg egcg per day my brain fog comes back.

I'm in an infinitely better place than before I started it but my ebv of late keeps reactivating. I'm fairly sure this is simply the lack of higher oat bran dose. When I take 14g a day I feel better in a few weeks. But if I take 4g a day I don't get the same effects. Also the winter cold and flu season has really not helped.

I'd say I went from 60% to about 80% but I go down to 70% quite often. Haven't got above 80. The vaccines have set me back 4 times. Both covid and flu vaccines have done this. Joshua s answer is don't get a vaccine. That just sounds really dumb to me.

Also I never did the fast. I thought it was way too much pressure to place on an ME body. I wouldn't do it now either.

As for your own ride. If you don't see improvements within a few weeks I'd say it's not working. It doesn't work for everyone. Only 2 out of 8 people I think had any improvement. So a low percentage.

A little list of my findings:

Oat bran: higher dose for several months causes neutropenia.
Egcg: 200mg twice a day causes adrenal fatigue or a wired/tired feeling.
Lion's mane: causes dysphoria and lowers sex drive (I don't take it anymore)

Everything else was ok. I never touched creatinine because it's just bad news if you ask me. Lots of crashes.

Liposomal glutathione helped me loads. But it took me weeks to build up to a non sedating dose. Equally nac took me weeks of titration to get up to 2g 3 X a day. Same with gylcine.

Also egcg, oat bran, probiotics and lipo glutathione all cause stimulation which leads to insomnia or lack of sleep. Which makes ebv titers shoot up and worsens ME in general.

As I say I haven't been PEM free since October or December. I'm not sure why but as I got the mRNA booster in December I can't rule that out for a few more months.

Neutropenia is a big issue and I'm constantly fighting that.

I've just started inosine but that seemed to bring a lot of my old symptoms back. But that happened when I started Josh's protocol so possibly it will go away and it's a good sign

Also with immune modulators you have to vary the dose because the body grows accustomed to the dose and they don't work as well. I'm about to try a dosing schedule for oat bran to try and stop the neutropenia.

Josh's protocol has helped me tons but one small stressor will knock me back. I've come to the conclusion that without valcyte or something similair the likelyhood of eradicating viral symptoms completely to go into remission is pretty much impossible on his protocol.

What I'm saying is his protocol might get you ten to twenty percent better but not much more because it simply isn't as strong as many of the antiviral drugs.

Hope this helps.
 
Messages
20
Location
Miami
Thanks for the feedback trier. I have moved up to even higher dosages of the lions mane and egcg and oat bran figuring that might induce more immune like symptoms, now I think I will have to reconsider. I am also looking at adding in Equilibrant or Oxymatrine for the coxsackie as well as DIV ozone for a variety of factors. I am also looking at adding this protocol from Life Extension for CMV since it already involves Reishi and adds an immune booster of Enzymatically Modified Rice Bran and Cistanche along with Cimetidine (which is the one part I am having an issue with mentally as it is an anti-acid and recommendation is to take 4 times the normal dose for 60 days, but if taken at bed time then probably OK). https://www.lifeextension.com/magazine/2015/1/a-common-virus
 
Messages
20
Location
Miami
Hi,

I have not done PCR tests for the viruses unless you count VIOME which I find largely useless and we had a discussion last night on the ME/CFS Facebook support group where someone who had positive titers IGM for the Herpes Virus also had PCR test which were all negative. I am on Famvir as it has a good track record and a better safety record than valganciclovir.

I have had no issues with Vitamin C and I have taken up to 40g in a day and did 20g a day for a month. There are pub med studies showing IV Vitamin C helps with EBV. The higher the vitamin C concentration in the plasma achieved by intravenous vitamin C, the lower the Epstein-Barr virus antibodies – especially for people with elevated IgM titers. The researchers also discovered the higher a patient's EBV antibody levels, the lower the peak vitamin C levels after treatment.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
My crash 10 years ago was from trying to run an obstacle course race which left me with near 0 NK cells and near 0 NK cell activity.
Do you attribute this to the viruses getting worse after overdoing it? What ha your immunologist said about your NK cells? Your Life Extension article pretty well explains what happened.
With regard to the EBV and CMV titers. I have had them measured many time over the last 10 years and I have never found a good correlation with them to how I am feeling
Chasing EBV and CMV titers isn't extremely useful. They relate to how well your B cells are make ng antibodies at any given time, not necessarily how active the viruses are. I learned my immune system wasn't working properly to begin with so It made it harder to fight the viruses and made the titers Even more unreliable.

Positive PCR tests for EBV and HHV6 (in addition to my high CMV titers) got my doctors attention and after trying artesunate and 50g high dose IV C IVs, mushrooms, ultraviolet blood irradiation with ozone, hyperbaric oxygen, LDN, and a number of other highly regarded herbals which didn't budge the viruses, I went on Valcyte which was effective.

There are pub med studies showing IV Vitamin C helps with EBV. The higher the vitamin C concentration in the plasma achieved by intravenous vitamin C, the lower the Epstein-Barr virus antibodies – especially for people with elevated IgM titers. The researchers also discovered the higher a patient's EBV antibody levels, the lower the peak vitamin C levels after treatment.
They said nothing about PCR which finds the DNA of the viruses. High dose IvC killed my cancer but did nothing for the viruses.
I am on Famvir as it has a good track record and a better safety record than valganciclovir.
There are 5 drugs effective for CMV, letermovir, ganciclovir and its prodrug valganciclovir, foscarnet, and cidofovir, only 2 are pills - valganciclovir and letermovir, which is very new and inhibits CYP3A4. Famvir is not effective.

I have spent a total of about 2 years on valganciclovir, having bloodwork regularly, and it has not been a problem (HHV6 has been the biggest problem for me, reactivating after my vaccines). According to Jose Montoya, valganciclovir has a reputation for being hard on the liver and kidneys because it has mainly been used in AIDS and advanced cancer patients but he has not seen any problems in ME/CFS patients.

I am also looking at adding this protocol from Life Extension for CMV since it already involves Reishi and adds an immune booster of Enzymatically Modified Rice Bran and Cistanche along with Cimetidine (which is the one part I am having an issue with mentally as it is an anti-acid and recommendation is to take 4 times the normal dose for 60 days, but if taken at bed time then probably OK).
This protocol only dealt with one area of your immune system and it is not without side effects.

Cimetidine is a known inhibitor of many isozymes of the cytochrome P450 enzyme system, including but not limited to CYP2D6, 3A4 and 1A2 isoenzymes, which can cause increases in plasma concentrations of certain drugs when cimetidine is ingested.137,139

I have some serious doubts that 60 days of it is going to do much for beating back your herpesviruses which seem well entrenched. EBV lives in B cells so helping T cells might be helpful, but it takes a lot more to beat it back.

Have you had your immune system tested? Lymphocyte subset panel? Immunoglobulins with subclasses? NK cell function? These viruses spawn all kinds of autoimmunity - have you found any autoimmune antibodies behind your symptoms?

What are your immunologist, infections disease doctor or other doctors doing or saying?
 
Messages
20
Location
Miami
Hi Learner1,

Thanks for the feedback. I will try to answer your questions in order. 10 years ago when my MAJOR crash occurred, I attribute it to overdoing it with exercise (and I still don't understand why that would lead to have basically no NK cell activity and number). This I was able to garner from Dr Rey who I was able to get in with. At some point, I also worked with autoimmune specialist but nothing came up from those tests. I was put on Famvir and Immunovir and it took about 2 years till I got back to about 50%, but I eventually stopped as I felt better when I stopped taking them. For the next 6 years, I would exist between 30% and 60% where I would feel OK for a while and then something would knock me down for 3 months (usually a virus from my kids) and I found the Major Autohemotherapy was helpful in getting me back over 50% and much less expensive than 10 pass ozone. Then 2-3 years ago, I did an FMT when I was crashed at about 30% and I has ridiculously severe night sweats, but felt better than I had in 8 years. For the next 2 years, I was able to maintain between 50 and 70%., but then I lost my job to COVID, my wife chose to divorce me and move the kids from Miami to Nashville. and so I had to sell the house and move, add in COVID and vaccines which kicked my butt, and now I feel like I am starting over from 10 years ago but now on my own and with alot less money.
In Nashville, I have not found any decent doctors and the few Function Medicine Doctors charge 3K to 5K to become a member. I am still working with a good Fucntional Medicine Doctor from Miami - Steven Wheeler and probably can work with Dr Rey by teledoc but it takes several months to get an appointment.

Here are some recent lab tests from November, I welcome your thoughts:
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What other tests would you recommend. In my mind, I need to get the immune system to start working again (like after the FMT), this is also based on multiple accounts of people who have recovered or gone into remission and it was the one factor that made a noticeable change almost overnight.

Mentally, I would like to do the FMT again as a test, but both I and the donor live in different places and that was pre-Covid.
 

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godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
Really feel for you and your experiences. I hope you're able to find some things that work and get you back there.

I seem to exist between 70 and 80% these days. But I think the problem might be that many of the immune modulators we take stop working if taken every day - I don't think this is true for antivirals. And I actually restarted joshs protocol twice. I had a two week washout period to begin with. But the herx and subsequent symptoms were hell even if they only lasted 3 weeks it was very unpleasant as I could barely think straight.

Anyway I hope you are able to get back to where you want to be. I'm sure you're already on discord. But if not you might want to look at the p lambda channel which may prove to be more efficiacious at viral clearance than any of the other drugs we often talk about. It's pure experimental work nobody really knows.

Good luck to all.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@Looking for Answers Yes, I do have some thoughts. Whoever ordered those tests gave you some suggestions of problems but could have done a more useful job.

Dr. Rey is a good gal - I talked with her at the NIH conference - she had approached me to ask about my protocol.

I'll PM you.
 

bread.

Senior Member
Messages
499
@Looking for Answers Yes, I do have some thoughts. Whoever ordered those tests gave you some suggestions of problems but could have done a more useful job.

Dr. Rey is a good gal - I talked with her at the NIH conference - she had approached me to ask about my protocol.

I'll PM you.

Who is Dr. Rey, and what are they doimg? Ty!
 
Messages
20
Location
Miami
DR Rey is a CFS specialist with Nancy Klimas group out of Nova SouthEastern University in the Miami/Fort Lauderdale area. They had been doing Famvir, LDN, and Immunovir, but now they seem more focused on Liposomal Glutathione and LDN and possibly Immunovir. I was/am a patient of hers for many years, but no long er live in South Florida. I talked to a fellow patient who visited her this week and this jpeg shows their current way of evaluating a person. Supposedly, there success rate with the Famvir protocol was only around 10%, but it may have helped me.
Hand Metaphor.jpg
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
Just to let people know that due to relapses (after vaccines on the whole) and neutropenia on the protocol + lots of things on the protocol chelate copper, iron, zinc etc, whilst also chelating heavy metals. Even so all these things but mainly viral dampening made me start trialing Famvir/Valtrex to see if they hit things harder and prevent or make relapses less severe.

I will go back to josh's protocol and have taken it in between antiviral doses and noticed I can recover much more quickly if I experience bad side effects or general worsening. Of course the antivirals are a new experiment, but so far they seem to have a much quicker effect on fatigue and PEM.

I do still take the glycine/choline/b5 and the glutathione + probiotics. I also still take NAC (but started that before the protocol) and drip feed magnesium 3x a day. I also think the reishi may lower histamine levels but cannot prove that, so possibly it has a secondary mode of action other than viral apoptosis.
 
Messages
20
Location
Miami
Glad to hear they are working for yo. Me 5 months on Famvir and I feel like I've barely made any progress. I will start to feel a little better then get absolutely crushed again. Have you tried adjunct therapies while doing the anit-virals (arteminisin, laruidcin, olive leaf) ?
 

Rufous McKinney

Senior Member
Messages
13,394
Just to let people know that due to relapses (after vaccines on the whole) and neutropenia on the protocol + lots of things on the protocol chelate copper, iron, zinc etc, whilst also chelating heavy metals.

I just ran thru a really bad stomach viral reactivation (presumed) and metals poured out of my body really intensely.

(and I',m still trying to cope/recover from all that its day 10)