If you're on the protocol and want to be included please leave a reply that you would like to be added with the info below:
* @godlovesatrier (non-water fast)
Background
Age: 30#s
Gender: Male
Pathology: OAT high pyruvate low lactate, Armin HHV6+, EBV+, Medichecks 4 antibody test EBV+ reactivated/recent. EBV acute reactivation June 2020.
Diagnosis and start:
Diagnosed with ME May 2016
Viral onset after recovery (2 weeks) and then relapse woke up with all the symptoms of ME. Minor surgery and an general anesthetic made things much worse 2 years later.
JL Herpesviridae protocol
Commenced: 7th May
Protocol Version: v3.2
Initial water fast: No
Initial low-carb induction: Yes (100g carbs)
Response: Gone from almost entirely housebound to able to go out every day with PEM fully blocked at 200mg egcg and able to cope very well compared to beforeat 125mg egcg without reishi and lions mane/oat bran.
Symptoms in remission: Dry mouth, poor wound healing in mouth, dental health (tooth enamel), energy levels better, cranial cervical junction inflammation/pressure/pain gone, neck pain/stiffness 90% better, dizziness gone (or very mild without reishi/lions mane/oat bran), persistent sore throat gone, eyelid twitching gone, difficulty concentrating gone, I used to sleep 10 or 11 hours now I sleep 7 hours a night,
Symptoms outstanding: Mild PEM, some neck stiffness, exertional tolerance not back to pre sickness levels, immune response (natural with egcg only) not yet back to pre ME levels.
Date of Last Update: 14th June
* @paused_me (non-water fast)
1. Severity: 2013 (mild), 2017 (moderate), 2018 (very very severe), 2021 (vv severe and tube fed)
2. Year diagnosed: 2013 (ME)
3. Protocol response: (Early stages too early to tell)
4. Pathology: Very low pyruvate : normal lactate
* @thebard (water fast)
7 days in - No improvements yet, having hellish symptoms exiting the water fast.
Last update: 13th June
* Reading_Steiner (non-water fast)
34 days in - Not seeing any big improvements, but doesn’t feel any better or worse. Last checked in 13th June.
* @GlassCanonLife (non-water fast)
Background
Age: 31
Gender: Male
ME/CFS onset/progression:
end 2018 - early 2019: mild
early 2019 - mid 2019: moderate
mid 2019 - present: severe
Bell CFIDS disability scale: ~25, fluctuate between 20 and 25 generally.
JL Herpesviridae protocol
Commenced: 01 Jun 2021
Initial water fast: No
Initial low-carb induction: Yes
Reishi:
01 - 05 Jun: Australherbs organic reishi powder (AH), 1 g 3x daily
05 - 08 Jun: AH 5 g 2x, 1 g 1x daily
09 Jun - : AH 5 g 2x, 1 g 1x, LEF reishi 3x daily
EGCG: 175 / 125 / 100 / 0
Response: minimal so far (Bell scale unchanged)
Date of last update: 10 Jun
Notes
10 Jun - Started 2 weeks before 01 Jun with 25 mg EGCG 4x a day along with a gradually increased dose of Lion's Mane and a water extract (no triterpenes) of Reishi. Did the proper low carb 4 days with 100 mg 4x EGCG on the 01 Jun and added oat bran 1 g 3x a day. Over the initial weeks, had a slight infection / immune response (?) - could have been a virus from daycare. Have taken BCAAs and sodium benzoate throughout as needed. Currently have been having head pressure and a lot of wooziness. The EGCG seemingly has given a slight boost in capacity but more of a difference between a good day and a bad day than anything transformative. With the LEF reishi now added, hopefully a more dramatic result will emerge.
* @Jump44 (not yet on forum)
No info on this person.
+ 4 other people on a separate forum, but I can't post there details yet without consent.
n/b - Everyone is male so far.
Non-water fast = didn't do the 4 day water fast outlined in the paper.
Water fast = the 4 day water fast outlined in the paper.
Those who discontinued:
1 individual from another forum who was originally diagnosed with ME who was later diagnosed with autoimmune Encephalitis. Discontinuation due to blackouts and fainting.
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Later on I'll reformat the thread into three sections:
Improved into remission
Improved (any improvement)
Discontinued
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