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

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  • Calluna
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    • June 15, 2021, 07:32:59 AM
Calluna's journey
« on: June 22, 2021, 06:34:54 PM »
Where I'm starting from
  • 33 y/o female at about 40% functionality on Hummingbird scale
  • Diagnosed December 2020, symptomatic since at least 2017. Gradual onset, so I can't pinpoint a date
  • Positive for EBV EA antibodies, negative for HHV-6; haven't been able to complete testing for other viruses
  • Primary symptom is PEM; some sleep disturbance, some possibly related mild sinusitis. No POTS; pain in neck and shoulders but that's what you get for sitting at a computer for ten hours a day
  • Otherwise fairly healthy and uncomplicated; biggest issue is depression, which has been well under control with medication for a year or two now
  • Hormonal fluctuations have been smoothed out with continuous birth control (skipping the placebo weeks). I'd get period PEM previously, but that isn't an issue any more

Day 0: preparation

The rest of the supplements arrived today, and I've put together four days' worth of pills and powders. I ran into some dosing discrepancies between the draft schedule and the released 3.31 specification (creatine, glycine, BCAAs, and choline I think) so I went with the lower doses when ambiguous. Taurine wasn't on the draft schedule when I ordered everything, but I should have some on Thursday. (I like sleep.) When it comes time to prepare again, I'll put together a more readable table of ingredients, doses, and times to help me keep everything straight.

I'll be starting this off with a low carb diet. (The fast scares me a little, but I'll keep it as an option if the protocol otherwise doesn't start working for me.) I've been more or less low carb for several years, so it's not a big shift.

Tomorrow morning I'll start on the supplements. I'm optimistic 🤞


  • Calluna
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    • 41

    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #1 on: June 23, 2021, 04:19:59 AM »
Day 1, Morning


Why does it sting going down



First set of pills and powders down by 7:15 AM. Vitamin burps from the pills, not unexpected. But the powder, man... I think I wound up taking it with 12 oz water and a squirt of Mio water flavoring. It stings my throat. Maybe it wouldn't if I used more water. I mean, if it was a nice alcohol burn, that'd be okay, but the stinging is just weird.


Gonna try to take it slow and easy today. I expended a lot of energy prepping stuff yesterday.




Afternoon

Lunchtime after a long nap. Tinned sardines in olive oil, red peppers, and a wild rice blend with some lemon juice for flavor. Tastes pretty good. The powders are also tolerable when mixed with 12 oz water to begin with, as Ian recommended. I'll be playing around with the flavoring a bit more.

Evening

I think my first day's gone fine. Dinner was baked salmon and roasted broccoli over rice with butter; I'll be repeating this lunch and dinner for the next few days. No apparent adverse effects thus far, so I appear to not be violently allergic to something I never before knew existed.

8 ounces of coconut milk is the best powder carrier I've found so far, but I still have some empty capsules coming to try to deal with the more undesirable flavors.






Attached is the aforementioned document laying out everything in a format friendly to preparation; probably doesn't look good printed yet, but one thing at a time.

« Last Edit: June 23, 2021, 06:08:29 PM by Calluna »


Re: Calluna's journey
« Reply #2 on: June 23, 2021, 09:05:16 AM »
For powders, I'd recommend:

- Taking them one spoonful at a time; take a small sip of water, immediately scoop the spoonful onto your tongue and drink more water, swallow while tasting as little of it as possible

- Or, heavily diluting them in 12-16+oz of water and mixing them very, very well. The glycine can help mask a lot of the other powders'... unique flavor profiles.

Welcome to the party! ;)


Re: Calluna's journey
« Reply #3 on: June 23, 2021, 10:20:47 AM »
hi and welcome @Calluna hope you get better

about the taste of supplements idk which ones you're on but you can just hold your nose or if it's sth with consistency and the powder getting stuck on your throat try a smoothie


  • Calluna
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    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #4 on: June 23, 2021, 06:10:32 PM »
Thanks, Ian and Vinicius. Heavy dilution got me through today 🙂 and I'll be experimenting with encapsulating the powders whenever my capsule order arrives.


  • Calluna
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    • 41

    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #5 on: June 24, 2021, 06:37:19 PM »
Day 2

Nothing too new and exciting today. I've had a mild headache for most of the day, and took a three hour nap (improved from five hours yesterday!). I should feel a bit better tomorrow since I'll be through the dip caused by my preparations on Tuesday.


  • Calluna
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    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #6 on: June 25, 2021, 04:39:58 AM »
Day 3



Cashew milk tastes much better as a powder carrier than coconut milk, IMO.



I wrote a bit more about my meal plan in Discord yesterday, and am sharing here for visibility:





Quote
what I'm doing for the next few days: - prep cooked rice, chopped red pepper, and broccoli florets; have lemon juice, olive oil, butter, frozen salmon, and tinned sardines packed in olive oil on hand; thaw one salmon fillet for your first day - lunch is 1/2 cup rice, 100g red pepper, and entire undrained can of sardines; microwave red pepper in bowl for ~2 min to cook first, then dump in lemon juice and rice and sardines and heat til warm - dinner is much nicer with a toaster oven but can be done with regular oven; line baking pan with foil, drip some olive oil on there and swish it around for greasing; add thawed salmon fillet to center, top with 1 tbsp butter (Kerrygold if you can, life changing :wink: ); add 100g broccoli florets around the outside, drizzle with a bit more olive oil; bake til salmon is done, around 24 min at 350f, play with temp; warm up 1/2 cup rice on plate, top with salmon and broccoli, dump the remaining butter and oil in the pan over the salmon


I've had the same breakfast each day for the past few years, it's 2 tbsp chia seed/2 tbsp flaxseed meal mixed with 1/3c hot water, leave for 2 minutes to set, sweeten/season to taste, top with 2-4 tbsp heavy cream


the flax/chia/sweetener/cinnamon mix can be prepared ahead, too


for lunch, if you're not fond of sardines or that much fish, you can probably replace with prepped or canned chicken or some other protein of your choice


Cronometer is helpful for tweaking exact quantities and macros. There is still room for a low-carb snack here.

Afternoon/Evening

Unexpectedly, I slept an extra six hours today, above and beyond the sleep I got last night. I had an extra 5 and 3 hours on days 1 and 2, respectively. I didn't think I'd stressed myself quite so much as that; I rarely have to take long naps like this for more than a day or two in a row. Wondering if daytime LOLA is a factor, and may skip it tomorrow until the evening.

I did get to encapsulate my evening powders, and enjoyed a very tasty glass of cashew milk free of weird flavors. 😉
« Last Edit: June 25, 2021, 06:34:30 PM by Calluna »


  • Calluna
  • New Member

    • 41

    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #7 on: June 26, 2021, 04:25:21 PM »
Day 4

Hot tip: EGCG works much better when you're taking a meaningful dose. That is, if your green tea extract is 45% EGCG, 125 mg of extract is not going to get you as far as a quantity of extract containing 125 mg EGCG 😅 I did start feeling better once I got that corrected, without otherwise messing with LOLA.

Some exertion today, primarily emotional, somewhat physical. Interested to see how that does or does not show up in the days ahead. I've got most of my powders encapsulated for most of next week; I skipped making up glycine and lion's mane capsules today, as I know both of those can go into a drink without disastrous results.


Re: Calluna's journey
« Reply #8 on: June 27, 2021, 01:27:44 AM »
Hey how are you doing now?


  • Calluna
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    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #9 on: June 27, 2021, 07:14:27 AM »
Hah, I was in bed for almost 14 hours 😂 Got some decent sleep, though. Otherwise too early in the day to tell.


  • Calluna
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    • 41

    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #10 on: June 27, 2021, 06:15:38 PM »
Day 5

First day on the reishi/lion's mane/beta glucans. I haven't noticed much today except for some temporary clearing of my chronic sinus congestion, which I've observed frequently in the past on a lower dose of lion's mane with some chaga added. Still relatively low-energy compared to my better days, so I may bump up EGCG tomorrow depending on how I feel.


  • Calluna
  • New Member

    • 41

    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #11 on: June 28, 2021, 06:06:35 PM »
Day 6

An up-and-down kind of day. Started out pretty down, in both mood and energy. Not quite to the point where I went back to bed, but it was a close thing. However, I bumped up EGCG to a full capsule and skipped LOLA for noon/afternoon, and had an external stressor resolved, so this afternoon and evening has been improved in terms of energy and mood. I'll be continuing the same EGCG dose and skipping LOLA for all but tomorrow evening, so perhaps tomorrow will be better as a whole.

My doses of the other >=1g encapsulated powders have shifted slightly based on what I can stuff into the capsule. Sodium benzoate is at 700mg down from 1g, creatine is at ~3.2g per dose, glycine is also around ~3.2g/dose. I'm going to stay on the creatine for a while unless I have another compelling reason not to; I can use the antidepressant synergies right now.

Continuing with lion's mane at >=750mg beta-glucans per day, 6 caps LE reishi, 6 caps NOW beta-glucan supplements (no alteration from schedule). I haven't noticed any other immune effects yet, aside from the sinus clearing I mentioned previously.

Hope for tomorrow: more energy, better mood, less of that stoned sleepwalking feeling.


  • Calluna
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    • 41

    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #12 on: June 29, 2021, 07:11:33 PM »
Day 7

Hey, I've made it a week! I felt better today than yesterday. I procrastinated on certain stressful tasks (for science, you know) to try to avoid mood-related complications, and generally pursued fun hobby-type things which are usually mild PEM triggers. Energy has been good most of the day; not where I was Back in the Day, but comparable to other good days I've had off the protocol. Too soon yet to say whether I'll be asleep half of tomorrow or Thursday, but I certainly had fun today.

No dose changes today from yesterday.


Re: Calluna's journey
« Reply #13 on: June 29, 2021, 08:02:58 PM »
Sounds like a productive week!

Hope you enjoy some more of that before the anticipated immune response takes it all away again for a while and puts you back in bed (usually cursing my name, by reports). 😂

The “wiped out” phase is reported to range from 6 days to 3.5 weeks, depending on severity. Seems to correlate with titres.
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.


  • Calluna
  • New Member

    • 41

    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #14 on: June 30, 2021, 06:22:08 PM »
Day 8

Not nearly so much fun today :) Physical energy was okay, but I was pretty wiped out mentally, so I didn't do a whole lot. Still carrying on 👍