Before the Protocol
ME/CFS diagnosed as Fibromylgia December 2019 where I was
Hummingbird scale 20% for about 2 years after gradually descending from a minor infection, sporadic headaches into severe migraines and then about a year after the initial infection started gaining symptoms one by one. Left with severe constant headaches for nearly 7 years.
I caught Covid19 in February of 2020 and crashed very badly in March and spent most of 2020 in bed with at most 1 spoon of effort for a day which regularly went into washing myself or eating.
Have all the primary and secondary symptoms of ME/CFS, MCAS as well as POTS. Headaches usually in the 6/10 range daily maybe more. Covid long hauling took me down into the 3-5% range. Due to my disability completely unable to attend GP appointments, not that it mattered because the NHS cancelled all follow up appointments, they have refused me medical care so much at this point I consider I don't have any now, its not available to me.
January 2021 I started to improve a little bit with the introduction of 300mcg of Melatonin. It helped anchor my sleep time and over a month got up to about 8% where I had been all year.
Started Protocol: 9th May 2021
At start of protocol Hummingbird was 8%.
Started with a 72 hour water and electrolytes fast.
Followed up with protocol v3.2.
Initial incorrect drugs for about 2-3 weeks:
1) Reishi - I was using Time Spores, claim high Triterpenoids on the packet but others seemed to think they didn't work.
2) ECGC - at roughly 200mg in the beginning, brought that down to 25mg the following week and have settled on 100mg for the past 2 weeks.
3) Oat Bran - My initial oat bran had very poor glucans content as far as I can tell.
Day 31-35
Went to get my AZ vaccine, I walked 1.5 miles, stood for 40 minutes to get it. The next day I was foggy and less energetic but it passed within a few days and I returned to my prior baseline. I did some strength training but the injury to my left shoulder is reducing the sets and reps and weight so not at my best but it is not causing PEM at this level.
Day 39
hummingbird - 70%
It is now easier to talk about all the symptoms that remain than all those that are gone.
I can spend much of a day doing complex technical work at a desk. I seem to lack mental stamina which limits the time somewhat to about 6-8 hours at which point I gain some fogginess and struggle to "see" properly, this is a migraine thing where you can see but it takes extra focus to use it and focus on it. I have very occasional headaches still but mostly I am much closer to clear headed, this is a lot less painful too when I do get them it is 1-2 pain range and the fog is the bigger issue.
Physically I have tested walking around for 1KM or so as well as a complete 3 set resistance band training regime on upper and lower body across a couple of days and neither seemed to cause me to PEM so I know my physical capabilities have now improved into the mild range and possibly PEM is gone completely but I am still working upwards slowly.
I still have some lower back pain and as my mobility in my spine returns I am I think running into some back pain problems so will have to start the McGill big 3 again to correct my core.
Still quite bloated, still a bit tender in the liver region. Digestion is still a problem constipation remains an issue but its somewhat less severe and I have been reduced my dose of psyllium husk. Finding electrolytes are less necessary too, lower amounts of those going in too.
Still haven't really gotten sick, just gradually improving week on week.