ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[godlovesatrier]

So currently we have:

@The Bard (water fast)
@Reading_Steiner (food fast)

1. Severity: Moderate (Can leave the house often but cannot work full time, occasionally dipping into severe)
2. Year diagnosed: Currently seeking diagnosis for ME.
3. Protocol effects: Not currently seeing amelioration of PEM at the roughly 30 day mark.
4. Pathology: (Unknown)

@BrightCandle (food fast)
@Boba (food fast Boba?)
@GlassCannonLife (food fast)
@terry_anova (food fast)
@godlovesatrier (food fast)

1. Severity: Mild trending toward moderate (housebound)
2. Year diagnosed: 2016 (ME)
3. Protocol effects: Before protocol was housebound moderate going out once a week or fortnight, very poor exertional tolerance. 30 days into protocol almost in remission (No PEM).
4. Pathology: OAT showed high lactate low pyruvate, AKGDH wasn't on the great plains OAT.

@Martin aka paused||M.E. (food fast)

1. Severity: 2013 (mild), 2017 (moderate), 2018 (very very severe), 2021 (vv severe and tube fed)
2. Year diagnosed: 2013 (ME)
3. Protocol effects: (Early stages too early to tell)
4. Pathology: Very low pyruvate : normal lactate

@Learner1 (food fast)

1. Severity: (Learner1 was worse prior to starting their own research and implementing various supps/treatments over time to combat various symptoms). Now able to walk up to 9 miles a day, occasional PEM, brain fog disappeared, went from 40% to 85% using other treatments/supps.
2. Year Diagnosed: 2015 (ME/CFS, B and NK cell immunodeficiency, HHV6, adrenal insufficiency, Hashimotos, MCAS, Hyper POTS.)
3. Protocol effects: After protocol increased energy from NAC, beta glucans appear to have no effect (good or bad), currently in a bad crash worst in 3 years increased brain fog and lack of energy.
4. Pathology: Labs did not show AKGDH deficiency or high lactate/hormone issues prior to starting protocol.

Food fast = calorific restriction to reduce viral pathogen's ability to replicate.

Water fast = the 4 day water fast outlined in the paper.

Those who discontinued:

@Hoosierfans (complications on protocol inc blackouts, fainting).

If people want me to add their severity, the year they got ME, what there diagnosed with and the current before/after gains I'd be happy to add these. Please DM me though. Any information like this in the above post was only posted with the consent of the member.

If any of this is wrong or I've missed someone please let me know so I can update.

 

[Martin aka paused||M.E.]

So currently we have:

@The Bard (water fast)
@Reading_Steiner (food fast)
@BrightCandle (food fast)
@Boba (food fast Boba?)
@GlassCannonLife (food fast)
@godlovesatrier (food fast)

If any of this is wrong or I've missed someone please let me know so I can update.

Me (diet)

 

[godlovesatrier]

Apologies I'll update. If people want me to amend just DM as well.

 

[pamojja]

Lots of people can define remission differently. Which can be problematic. Even if it sounds semantic and a tad anal.

Remission is usually a term given for ceasing in conditions with no cure.

For example had remission from a 60% walking disability from PAD, and its aprox. 80% stenosis at my abdominal aorta in 2015. Interestingly the stenosis is still there, just no disabilty from it anymore (must have been accomplished by extensive revascularisation).

Same with a COPD in 2013, the symptoms are gone, on imaging the damage can still be recognized, though reduced somewhat.

Same with remaining PEMs in 2018, PEMs abolished, but still not anywhere close to my former energy levels.

Doctors usually don't take remissions that serious, if they can't see it with their technological means. Lawyers don't take the docs that serious, once the particular symptom for disabity ceased.

 

[Martin aka paused||M.E.]

Remission is usually a term given for ceasing in conditions with no cure.

For example had remission from a 60% walking disability from PAD, and its aprox. 80% stenosis at my abdominal aorta in 2015. Interestingly the stenosis is still there, just no disabilty from it anymore (must have been accomplished by extensive revascularisation).

Same with a COPD in 2013, the symptoms are gone, on imaging the damage can still be recognized, though reduced somewhat.

Same with remaining PEMs in 2018, PEMs abolished, but still not anywhere close to my former energy levels.

Doctors usually don't take remissions that serious, if they can't see it with their technological means. Lawyers don't take the docs that serious, once the particular symptom for disabity ceased.

I'm a lawyer

 

[Reading_Steiner]

Eh... food fast ? aaaah. I thought we were just supposed to be on keto but eat as many calories as we want. Its been about a month and I haven't noticeably lost any weight yet.

 

[godlovesatrier]

Hey @Reading_Steiner

From the 3.2 protocol:

So yep those macros are what Josh means by food fast. I cannot remember if 50g carbs is absolute keto limit or gets you into ketosis.... I thought keto was 25 to 50g carbs, but it's been awhile since I read up about it.

 

[Dionyzius]

Out of curiosity, I looked up reishi in my favorite food store: https://www.pit-pit.com/reishi-gemalen.html
Could be useful for people in Europe/Netherlands. Interesting information: when reishi is dried with higher temprature it gets a darker color + it should have a subtle bitter taste. This could explain differences in how it looks between brands.

I have pitched the protocol to my doctor but he wasn't really convinced (and I rather do it with full support). He was mostly concerned about the mushrooms (in particular beta-glucans) as he said my immune system is already overstimulated, especially phase 1 (he based this on the last measurements of the cytokines I think).

My immune system is also activated after an 'active' day. When I'm high in energy these are sympoms like a running nose, sneezing, postnasal drip, etc. Could be a pathogen or my immune system is just abused/misused to clean up stuff from anaerobic oxidation (lactate, etc.)...

be aware that powder can be as low as 0.5% triterpenoids(extracts as low as 1-2%)

 

[Martin aka paused||M.E.]

Today was another day with more energy. To early to say it works or not. Just wanted to give an update.

 

[godlovesatrier]

I'm very cautiously happy for you and really hope it continues.

 

[joshua.leisk]

Eh... food fast ? aaaah. I thought we were just supposed to be on keto but eat as many calories as we want. Its been about a month and I haven't noticeably lost any weight yet.

To clarify, the ROS reset period at the beginning is rather low-carb (to drain some glycogen, also), but not intended to enter ketosis.

After these few days, the macros come up to around 1:1:1 net carbs : proteins : fats.
Additional activity may require additional carbs, as this becomes appropriate.

Specific food items are included to help remodel the gut microbiome around producing helpful SCFA / organic acids, etc., along with covering normal daily micronutrients.

The example diet -

(thumbnail used to save screen real-estate)

Broccoli and eggs are included for sulforaphane and [choline, biotin, iron, iodine, aspartate, omega-3s]. Ideally the broccoli be eaten with radish and / or mustard seeds for some of the useful enzyme needed to get the most sulforaphane from the broccoli.

Smaller meals, over the day are better than large meals in one hit. This should be reminiscent of a diabetes-friendly diet.

Total calories should be appropriate to your weight goals / activity.

 

[pamojja]

So yep those macros are what Josh means by food fast. I cannot remember if 50g carbs is absolute keto limit or gets you into ketosis.... I thought keto was 25 to 50g carbs, but it's been awhile since I read up about it.

Totaly missed that part . So an average of net carbs at 67g=268 kcal; protein ~2g(x60kg)=480 kcal; fats ~2.2g(x60kg)=1188 kcal; Total kcal per day = 1954.

So no real calorie restriction or even fast at all. Would rather call it a moderatedly low-carb/high fat diet. With 3 meals max. 15g of net carbs most still would periodically come out of ketosis, which however is highly individual.

The example diet -

(thumbnail used to save screen real-estate)

130g of fats and 140g of protein in the 2300 kcal example diet.

About 170g of net carbs? - Even with half of that I would turn full blown diabetic!

 

[joshua.leisk]

Totaly missed that part . So an average of net carbs at 67g=268 kcal; protein ~2g(x60kg)=480 kcal; fats ~2.2g(x60kg)=1188 kcal; Total kcal per day = 1954.

So no real calorie restriction or even fast at all. Would rather call it a moderatedly low-carb/high fat diet. With 3 meals max. 15g of net carbs most still would periodically come out of ketosis, which however is highly individual.



130g of fats and 140g of protein in the 2300 kcal example diet.

About 170g of net carbs? - Even with half of that I would turn full blown diabetic!

Net carbs is 120g there. The rest is fibre.

 

[pamojja]

Net carbs is 120g there. The rest is fibre.

Hmm.. my usual net carb is at 60g for keeping prediabetes in check. Even without counting supplemental fibers, the fibers from my diet is already above 50 g/d!?!

After these few days, the macros come up to around 1:1:1 net carbs : proteins : fats.

Ratio in kcals or grams?

 

[joshua.leisk]

Hmm.. my usual net carb is at 60g for keeping prediabetes in check. Even without counting supplemental fibers, the fibers from my diet is already above 50 g/d!?!



Ratio in kcals or grams?

Grams

 

[pamojja]

12 LEF Mix capsules at €2.19 per day for conviniently replacing the Green Tea extract, the B-Vitamin Complex and Vitamin E is therefore not really a reasonable option:

My logic here is that relevant to the model, in addition to B,C,E vitamins, it also has -
...

If it helps people, a little birdy mentioned iHerb give you 20% off with "SHOPAPP" code, which may still be active.
This works out to be EUR1.32 / day for the Life Extension Mix.
https://de.iherb.com/pr/Life-Extension-Mix-Capsules-360-Capsules/86458

The reason why LEF-Europe doesn't sell all versions of US LEF-Mix is because of import restriction in the EU. And therefore produced one excluseively for the European market. See here (scrolling down a bid for the EU): https://www.lifeextension.com/vitamins-supplements/shipping/shipping-information#Europe

For example since last year the reduced all P-5'-P down to 20mg per daily dose in any of their EU-version of supplements.

For some European countries their customs isn't much of a concern. Usually just gets confiscated. My country (Austria) customs however can be very unpredictible. There isn't even a blacklist, they just compare the ingredients of supplements to whatever is already found in prescription medications. If they find any item, they confiscate and fine for illigal medicine import (practically impossible to do legaly): €260,-, up to €2.600,- on repeat. Happened once to me with a $10,- of NOW TMG. Only was lucky because they couldn't process my repeal in the required time of 1 1/2 years.

If the custom-officer abitrarily considers it a minor offence, it incures a lesser fine of €50,- and confiscation. Which then isn't repealable though. Already paid for ALA, Silimarin and Nattokinase €50,- each a bottle never received. Never mind all of those alledgedly prescription medication ingredients are available from within the EU as supplements and without any interference of customs..

The neglible amounts of the following doesn't make it worth taking the risk for me. Though thanks for your efforts for explaining their place in your experimental protocol. And of which I took anyway much more to assist my multiple remissions:

-?- mg - Suforaphane, proanthocyanidin (for 3a-HSD)
100mg, 15mg - Silymarin, quercetin (GDH)
100mg - Hesperedin (which synergises with the forskolin for increasing cAMP)
100mg - TMG (NAD+ regen)
5 mg - Apigenin (https://www.spandidos-publications.com/10.3892/ijo.2015.3243)
-?- mg - Wild blueberry anthocyanin (ammonia->hippurate)
3mg - Boron (normalises SHBG, altering ratio of free androgens : free estrogens)
250mg - Inositol (albeit a tiny amount, this may be increased separately - I'll be talking about this soon.)

Without a Myrosinase activator Broccoli Extract only contains Glucosinolates, no Sulforaphane. So their ingredients labeling is misleading. The cheapest and laziest way to really get a good dose of Glucosinolates (along with a Myrosinase activator to produce Sulforaphane) are Brokkoli seeds, where certain cultivars contain even >8mg per gram of seeds (which have to be grinded; more information here: https://www.topfruits.de/brokkolisamen-bio). A teaspoon full gives an effective dose of about 20mg.

A gram of dried parsley provides 45mg of Apigenin.

10mg Boron indeed reduced my highest SHBG of 122 down to 63 nmol/l within 3 years (18-54 normal range; <30 optimal). Or 3g TMG lowered my homocysteine. Or 320mg Silymarin (along with 380mg choline) deflated my NAFLD.

 

[Rebeccare]

THIS THREAD HAS BEEN CLOSED

Phoenix Rising offers a forum for the exchange of our knowledge and experience in dealing with ME/CFS, but it is not a platform for conducting medical research. Joshua Leisk, who has shared with us his protocol, has ended up doing more than sharing his own experience; a de facto clinical trial of his protocol is being conducted. Regrettably, this does not fall within the scope of Phoenix Rising's mission. Members are reminded that our rules prohibit the soliciting or giving of medical advice. So anyone seeking that will have to contact the researcher/healthcare provider outside of this website. Joshua's website is: www.thinkingmuscle.com