Research Group for ME/CFS, Chronic Disease, Aging and Cancer

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BrightCandle's progress
« on: June 17, 2021, 05:27:13 AM »
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.


Re: BrightCandle's progress
« Reply #1 on: June 21, 2021, 07:52:26 AM »
Humingbird 20% to 70% in 39 days. Absolutely incredible, well done. ;D


Re: BrightCandle's progress
« Reply #2 on: June 26, 2021, 02:23:41 AM »
This past week I upped the dose of ECGC to 200mg per dose and it made no difference to the headaches. Headaches still come as the day goes on and are getting gradually worse as I exercise more heavily, I have one this morning unfortunately. I shall tone back the level of exertion a bit, my body cany get rid of the waste products its producing and I may need to adjust some other aspects of the protocol. Neither less capability wise I would say I am the same, 80% on the hummingbird just slightly more periods with headaches.

In terms of Oat bran response I only seem to get anything from a bowl of it, I have regularly been taking in 2 tablespoons of it combined with a meal and I am also taking in the recommended Oat fibre with each dose as well. I haven't seen much of any immune response so far, that aspect just doesn't do anything for me. I noticed no difference changing from Time Spores to Life Extension Reishi either. Definitely capable of taking in "hero" levels of oat bran now, the taste grows on you.

Some moderate improvements in bowel movements this past week, gut seems to slowly be recovering and I am now completely half dose of my constipation medication and still passing fine.

Activity wise this week I have done resistance band training 3 times, super sets and one of them was a real cardio workout too. Walking and other physical activities in between have all been fine too, PEM response is mostly just a headache rather than anything energy wise. Shall have to tone that back a bit, I am exceeding what my body can excrete apparently.

Can't complain I have gone from bed bound to taking walks and getting a large number of spoons a day, I can play games, write code, walk around and talk and keep myself clean and shaven. It is a bit hard adjusting back to having some energy in the body, people expecting you washed and your hair combed! The "only when really necessary and up to 6 times a month" migraine tablets have sat idle the whole time I have been on this protocol, unused, when before I really wished I could take more a month than that! So it is a dramatic impact even if I still have remaining headaches these are minor compared to the constant agony from before but I am pretty certain they can be eliminated too given time or the right dose of supplements.

This week I will start incorporating some of the v3.31 changes. I wont be taking the Life Extension combo multivitamin instead taking the individual pieces from before but other than that I think I have all the pieces, will likely know in a week how that goes. Life has improved a lot, no primary progress this week that I noticed, slight regression in headaches but they seems to be a replacement for PEM due to the increased activity.


Re: BrightCandle's progress
« Reply #3 on: July 03, 2021, 10:18:04 AM »
Day ~47
Last week was good from an energy point of view but I had a lot of problems. Got super angry a couple of days in and seemed to have some pretty weird neurotransmitter/serotonin related issues on lower 5-HTP dose. Previously I have done that without much of anything happening but it was really dramatic on 3.31. This week I have gone for a hybrid with 3.2 except I have maintained the lower monohydrate, added the Forskolin, kept a higher EGCG and add some extra beta glucans all 3.31 like. I suspect the issue was Reishi but I am not taking a chance this week with further changing candesartan and 5-HTP is back up to full strength.

Other than the anger issues I was fairly energetic last week. I have been alternating exercise between resistance training one day and walking the next where resistance is up to about 12 sets a week and the walks are up to 40 minutes long. Walking speed is still quite slow, still getting higher heart rate than I would like but it came down last week and that is probably the reduction in Candesartan dose rather than a dramatic fitness gain as the drug worsens my POTS.

Headaches are about the same, mostly gone, definitely tolerable and not in the way very often. Still having low energy moments which go away if I add in some glucose based energy.


Re: BrightCandle's progress
« Reply #4 on: July 03, 2021, 12:26:12 PM »


hi 

candesartan also helped my IBS-D but as soon as discontinued it came back full strength

telmisartan on the other hand appeared to help slowly but gains sticked more, ymmv.



Re: BrightCandle's progress
« Reply #5 on: July 06, 2021, 04:56:19 AM »
Day ~47
Last week was good from an energy point of view but I had a lot of problems. Got super angry a couple of days in and seemed to have some pretty weird neurotransmitter/serotonin related issues on lower 5-HTP dose. Previously I have done that without much of anything happening but it was really dramatic on 3.31. This week I have gone for a hybrid with 3.2 except I have maintained the lower monohydrate, added the Forskolin, kept a higher EGCG and add some extra beta glucans all 3.31 like. I suspect the issue was Reishi but I am not taking a chance this week with further changing candesartan and 5-HTP is back up to full strength.

Other than the anger issues I was fairly energetic last week. I have been alternating exercise between resistance training one day and walking the next where resistance is up to about 12 sets a week and the walks are up to 40 minutes long. Walking speed is still quite slow, still getting higher heart rate than I would like but it came down last week and that is probably the reduction in Candesartan dose rather than a dramatic fitness gain as the drug worsens my POTS.

Headaches are about the same, mostly gone, definitely tolerable and not in the way very often. Still having low energy moments which go away if I add in some glucose based energy.
If you're seeing "hangry" moments, it sounds like your carbohydrates could need increasing to match increased activity levels. Your sleep may also be affected by higher cortisol, if you're running out of glycogen.
NB. I am NOT a doctor and all information provided is for educational purposes only.

Please consult your physician before attempting anything you read here.


Re: BrightCandle's progress
« Reply #6 on: July 17, 2021, 12:54:06 PM »
Day 61

I crashed on the 10th July. I was slightly off all week and on the Friday when I exercised I felt the lack of energy and stopped my session short. I crashed the next day. It took me down to hummingbird 5% again with a 9/10 migraine. Sodium Benzoate helped as did a 72 hour fast I started on 13th July and I am back into more like hummingbird 50% already. Still feel a bit weak but the energy is returning as each day passes and expect I'll be back to where I was soon.

Today I have changed my protocol as recommended. So I am now doing V3.2 with the V3.31 adoptions from before but now with the Cocksackie-b variant of drugs as well! I am going to need my own spreadsheet for what I do at this point.

Not a lot more to say really, it has been a shit week but I feel a lot better now and since the fast. Everything came back after the crash, the gut problems, the pains, it all just immediately came back and I was severe all over again, very glad it was short as it really sucked. It was the fast that made the substantial difference and by the time high dose Apple Cider Vinegar and Sudafed were available there wasn't a lot to help with.

I am considering now fasting for 72 hours every couple of weeks, so I'll only eat 11 days in every 14. It seems to be highly effective and I always think its going to suck more than it does in practice and I loose a bit of weight doing it.


Re: BrightCandle's progress
« Reply #7 on: July 25, 2021, 11:05:20 PM »
The Coxsackie protocol in general is working out really badly. I can't sleep at all currently, fully wired and tired with really severe depression. I am going to have to bail on testing it as I can't continue to slip backwards like this. It doesn't work it just makes me worse.


Re: BrightCandle's progress
« Reply #8 on: July 26, 2021, 02:14:43 AM »
The Coxsackie protocol in general is working out really badly. I can't sleep at all currently, fully wired and tired with really severe depression. I am going to have to bail on testing it as I can't continue to slip backwards like this. It doesn't work it just makes me worse.
Thanks for what you've done and appreciate you helping out with the coxsackie testing.

Did dropping the carbs back down change anything?


Re: BrightCandle's progress
« Reply #9 on: July 26, 2021, 06:05:20 AM »
No carb reduction made no difference.


Re: BrightCandle's progress
« Reply #10 on: August 07, 2021, 10:36:44 AM »
For the past 3 weeks I have tried to make the 3.2* + Coxsackie work with the use of Apple Cider Vinegar, Reservatol and magnesium (citrate and N-Acetyltaurinate) spread throughout the day. The problem I was trying to solve was one of increased anger, depression and quite bad levels of fatigue requiring rest (hummingbird 20% or so). None of it worked.

As such I am back to V3.2 just with 3.31 levels of Creatine Monohydrate and with a different probiotic. Hopefully this clears me up by the middle of the week when I'll evaluate what I am doing from then on.

My biomesight microbiome test came back and the two biggest problems are too little Bifidobacterium and Faecalibacterium, well below normal range with everything else being either really good (diversity) or at worst out of range but satisfactory. In looking for a probiotic to do both (I have one with strong amounts of various substrains of Bifidobacterium) I found a 2017 study noting that CFS patients are often deficient in these 2 and pondering if repairing it could reduce disease burden. The suggested diet changes are plant based and increase in fibre and reduction in animal protein and fats. So the probiotic I have targets the Bifidobacterium deficiency (the worst of the problems)  and I'll look to do something about the Faecalibacterium too this week and add that to introductions, but I also need to try and avoid certain others I am high in already which is making it a tad more complex to choose the right ones. Still the biomesight report is amazing, its really detailed and there are a variety of strains and things I should reduce or increase and some of it at least has actionable information about how to do so. This is why I changed the probiotic.

Currently hummingbird 20%, the coxsackie protocol has made me worse.


Re: BrightCandle's progress
« Reply #11 on: August 12, 2021, 08:15:11 AM »
Already feeling a decent improvement from the change 6 days ago. Brain fog reduced, fatigue reduced, no longer depressed or angry. I shall have to work out which ingredient precisely caused my issues to get Joshua some better information but I'll leave it a week or two to get some function back before I try to change anything. I am improving again and that is the main thing, no longer feel like taking the protocol is making me worse.


Re: BrightCandle's progress
« Reply #12 on: August 18, 2021, 07:35:40 AM »
Still on V3.2 with Creatine Monohydrate reduced to 2x3G and EGCG at 200mg. I have added the Long haul stack as well (B2 flushing, Selenium, Quercetin, Zinc).

Seeing gradual improvement, still feeling a bit fogged and more so late in the day but physically improving and around hummingbird 40%. I think its interesting that the improvement isn't quicker the second time around but thankfully the protocol still works as it did before my crash.