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Richard Lewis Profile picture
Richard Lewis
@Z3R0Gravitas
Extropian sci/tech geek. Improving moderate #MEcfs, #non24-hour sleep. #ADHD-PI, #AuDHD, #dyslexic. "ZeroGravitas" in PC gaming. He/him. 42. Please correct me.
Jun 4 • 34 tweets • 13 min read
1/ Overview of my #MEcfs improvements quantified! #PartialRemission #MEcfsEgress

Context: I've had moderate ME for a decade, gradual onset worsening CFS since teens.

tl;dr - major improvement contributors:
- BornFree minerals (half into stage 1).
- Environmental/mold avoidance. Over 2 years of data. Productivity (left vertical axis) and steps (right vertical axis) graphed together with basic annotations (year starts marked). Steps shoot up from a nadir of under 1k per day to around 3k at the start of this year, where they've plateaued. From Pedometer, an app on my phone (I take everywhere). My most accurate step count. This is close to my limit, avoiding mild (same-day) PEM. "Productivity" is (for me) synonymous with having viable cognitive/executive function (my biggest problem) and a lack of physical malaise; I start doing something (semi)useful soon... 2/ More discussion in ALT texts!

Above graph shows most tangible metrics:
• Productivity - almost 2x since pre-Covid1 baseline.
• Step count - up 3x, resuming daily walks (paused a decade).

Down-thread: Improvements in HR rise, FUNCAP, weight... Unroll & blog version at end. Table of contents: - Annotated graph timeline - Pacing not pushing note - Non-24-hour circadian fix - Weight regain - FUNCAP breakdown change - Other improved stats (crash hours, music enjoyment, physical tasks, BMs, gassiness) - Orthostatic intolerance HR & BP rises (POTS/OI). - BornFree protocol, supplements, diet - Mold/environmental avoidance - Personal comments, requests - Tracker sheet overview - Thread reader unroll & blog link
Dec 10, 2024 • 20 tweets • 9 min read
Insights on my new symptoms please!?🙏

Mostly: environmentally triggered sleep transition glitch - something pushes me firmly away from the moment of unconsciousness, etc.

Low on room options, clothes, sanity! Unsure how much is mold/chemicals/dust (& supps). Overwhelmed…
1/n Image … trying to figure/arrange many things. Awkwardly living, day-sleeping, on my parent's sofa for a month. Worried about losing this refuge.

Any thoughts/questions welcome, even if covered in my kitchen sink information approach, below. (Getting things straight for me too.)
2/n • Details of symptoms: - Reaction - Go to bed fine & sleepy, but instead of (usually quick) nodding off, I get pushed back from that transition. With varying co-symptoms. Or at minimum woken an hour or few later. Overly alert, then very fatigued and miserable later (sleep loss + neurotransmitter swing?). - Urine production and GI movements sped up 2-3 times right after sleep-glitch (without diarrhoea). Several toilet visits during expected sleep time. - Resting heart rate ramps up (55 -> 70bpm ish). Sustained for a day, declining over a few. But standing up HR is not much higher (than usua...
Oct 14, 2024 • 17 tweets • 4 min read
My notes on @KatBoniface's @RenegadeRes lightning talk. YT vid linked below. Covers:
• #Glutamate (Glu) dysfunction types: excitotoxicity vs hypometabolism.
• Glu transporters (GLAST, GLT-1), aspartate.
• Causes: #TBI, #LC, etc.
• Relation to #ADHD, #autism, not epilepsy.
1/n Glutamate (Glu) researched for 30 years in #MEcfs & related diseases.

Main focus on excess release = high inter-synaptic levels -> excitotoxicity.

Which causes cell death and hypersensitivity symptoms.
2/n
Jul 4, 2024 • 25 tweets • 7 min read
High level BornFree overview: it's ultra-detailed functional medicine fundamentalism.

• Stage 0: cellular nutrient status assessment - unconventional tests for what's actually in tissue (Oligoscan, CMA, OAT, HTMA).

This modulates a dozen supplement levels, y/n on a few.
1/n • Stage 1: "remineralisation" is patching up the serious deficiencies we all have, in order from most fundamental/dangerous, like electrolytes up the B-vits trace minerals you've not heard of.

Complex diagrams show where these break/fix key cellular energy, etc, pathways.
2/n
Mar 15, 2024 • 12 tweets • 8 min read
I just made my first ever batch of DrT inspired, Myhill recipe flax/linseed 'buns'. 😀🍞
1/n

Image
Image Not sure if I cooked them long enough or too long. Still a little moist in the middle, not sure how well they'll keep?

Bland, but not bad tasting. Could do with something on them. Not sure what (given my HIT, etc). Maybe just eat them with my quick stewed dinners.
2/n Image
Mar 7, 2024 • 8 tweets • 4 min read
Alcohol intolerance in #MEcfs, #LongCovid:

The #ALDH enzymes, that preferentially detoxify ethanol via #acetaldehyde, also degrade histamine! After either DAO (gut) or HNMT then MAO (liver, kidneys).

A major focus of @joshual_tm's BornFree protocol is inadequate ALDH…
1/n 🧵
Crop with my yellow highlights from Joshua Leisk's big metabolism diagram, available here: https://bornfree.life/understanding-the-model/6/updated-disease-model-wip/45/ Shows the two histamine degradation pathways, both requiring ALDH enzymes. Also co-factors of magnesium, zinc, NADH (B3). Before that FAD (B2) and methyl donation from SAMe for HNMT. … And excess acetaldehyde, from fungus (candida) and gut bacteria. From die-off or just downstream of eating.
2/n HERXHEIMER / DIE-OFF / ACETALDEHYDE SUPPORT Acetaldehyde is one of the primary toxins released during microbial die-off events and also in smaller amounts, multiple times per day, in response to normal dietary intake of nutrients. Our food intake also feeds our resident microorganisms -including the pathogenic species which allows them to produce (toxic) metabolites and poison us downstream of each meal.
Mar 6, 2024 • 8 tweets • 4 min read
My collection since end of 2023.😜

OK, so I only use the Omron BP cuff for get-up readings, but the other 3 (Fitbit, Garmin, Visible) I've continued with, for different metrics.

Possibly a little 'extra', with all the graph posting?😳 But I draw the line at Oura Ring!
1/n 🧵?
Image So what is each best at? 🤔

1️⃣ Fitbit Luxe (£90, no sub):

✅ Tiny. Sleep structure more believable. Daily RHR is my longest running metric.

❌ App inflexibility. Only 5 day battery. My #non24 causes HRV nonsense data & missed sleeps. Peak HR missed:
2/n
Jan 12, 2024 • 44 tweets • 25 min read
The weirdness of my illness is so isolating. 😕

It was a relief, in 2013, to go from an n=1 "illness CV" to #MEcfs.

But currently I feel like I'd need a dissertation to adequately explain the context of any problem, even when asking this community. Like...
1/n A minor one: what meal do I have now?! And which set of supplements? 😵‍💫

¼ tab Cetirizine turned my sleep from ~6h to 11h+2h nap.

Then ⅛ to 2.5h+5h nap (in rest between dinner servings).

Now after stopping I've had 0 hours...
2/n Garmin Vivosmart 5 "Sleep Consistency" graph for for last 2 weeks.
Oct 17, 2023 • 13 tweets • 6 min read
Another paper that correlates with my decade old metabolic test results, with #MEcfs! 😅

I guess also vindicates my continued taking of 5-HTP.🤔

They found reduced peripheral serotonin (in blood rather than CNS). Via meta-analysis and targeted #LongCovid patient testing.
🧵 1/n

Image
Image Functional medicine testing in 2013 showed I had almost all low serum amino acids, including tryptophan, etc.

2014 study then suggested they're used for cellular energy. I thought this produces the high aspartate (I saw) as a byproduct. But does new paper show that low, too?
2/n Image
Aug 1, 2023 • 21 tweets • 10 min read
I was lucky enough to be offered @visible_health's VisiblePlus+ early access program, for better monitoring #LongCovid #MEcfs #POTS.

Here's what I know:
• Polar Verity Sense arm band.
• UK only initially, US next.
• £65 buy in includes 1 month subscription at £15.
🧵 1/n Image Harry's introductory video gives an overview of the new service:
• High accuracy HR data all day (not in sleep).
• Better morning stability readings.
• Real time alerts.
• Pace points to budget activity.
• In development: UpTime & OI HR changes.
2/n


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Image
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Jul 28, 2023 • 10 tweets • 6 min read
Why did I have a temporary post-Covid #MEcfs *improvement*..?!🤔

I've tried to figure it out by assembling this Google Sheets self-tracking #dataVis extravaganza.😵‍💫

I'll try to break it down into more manageable parts and explain the various ideas I've brainstormed.🙂
🧵 1/n Image To be clear, this quantifiable step up in my function is what I mean.

Luckily, I discovered I'd left a Pedometer android app running for the last 2 years, giving objective data pre-Fitbit.

Which apparently validates my somewhat subjective daily "productivity" scores.😃
2/n Image
Jun 9, 2023 • 9 tweets • 3 min read
This is a totally normal, relatable process, right..? Everyone does this when deciding which fruit to switch to having with their breakfast porridge. To make it palatable. And not cause a 24h delayed crash. 😅 Image For you (fellow) odd-bods asking for a copy, here you go!:

I've added more/better data to lectins, salicylate and oxalate and made the whole table sortable by any column. I'll add additional fruits on request.🙂docs.google.com/spreadsheets/d…