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.
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.
3/ A much more detailed version of the first graph (same 830 day period). I think of my recent history in terms of the landscape of this productivity plot!
More recent improvements dwarf those I made a fuss about in my post-covid analysis threads:
8/ Weight regained with nutrients and/or mold avoidance? Up from borderline 'underweight': 54kg at 173cm. Without notable dietary changes.
I'd lost 2kg in each acute Covid infection. A further 2kg with worsened fructose intolerance after 1st. Then stuck lower after 2nd (worse).
9/ FUNCAP (function metric) increased from low-moderate to mild? Having been mostly pre-limited by fatigue, weakness & executive dysfunction, more than PEM.
I don't feel the (eg) "being upright" score captures how disabled I still am. And encumbered by my health regiment, etc.
10/ Also improved:
- 'Crash hours' (when too physically/mentally slumped to function).
Note: my graphing sheet runs a basic statistical correlation between the two sets of data selected. Also with offsets of up to ±5 days, to look for causation. Unsurprisingly strong link here.
11/ Scoring scales & details in [ALT] texts.
- Music enjoyment way up!
- Physical tasks up.
- BMs back to better GI consistency (food additions were also made, eg chia seeds).
- Gassiness trends upwards roughly in line with BM and general improvements (gut biome change?).
12/ To assess orthostatic intolerance (borderline POTS), I've been doing a mini-NASA lean test every day I get up from bed.
Pulse rate rises have almost halved, from ~40 to ~20bpm (rebounding a little recently). Data from my Omron pressure cuff.
13/ Less HR increase on standing. But also slightly higher HR in bed. (Catecholamines up? Bradycardia previously?)
Blood pressure (BP) readings all dipped down after Covid2. Then rose *preceding* insomnia reactions. (Electrolytes, minerals?)
Pulse pressure (PP) unsure meaning.
14/ I started these get-up (from bed) measurements 2 years ago: x.com/Z3R0Gravitas/s… Per @angryhacademic @Naomi_D_Harvey.
Hoping to see if my HR rise would predict productivity that day, per @KatBoniface @hiimchiralkthx: x.com/KatBoniface/st…
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx 15/ I've held back a couple dozen more graphs for a part 2 thread. They are mostly less decisive, covering:
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx 16/ I think the BornFree protocol has a wide applicability to #MEcfs, #LongCovid, etc. As @Joshua_TM says...
... But unfortunately narrow accessibility for now: complex execution, indecipherable info, cost. My overview explainer thread:
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx 17/ My main inaccessibility: admin off ordering various supplements (internationally) while cost conscious.
So I've been slowly blundering in piecemeal. Not ideal, nor is my current regiment; I've pulled back from many good supp's that wreck my next day
energy & cog' function...
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx 18/ ... Prioritising electrolytes (always essential), key trace metals that tested low, & generally targeting supps that should optimise norepinephrine (NorE) synthesis. To bootstrap top-down thinking (my weakest link).
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 19/ Almost everything that's helped me I've tried/failed before, or was still taking! In different forms and lesser amounts.
Here's most of my ~40 supplement current regimen (copy sideways to read easier). BornFree would be 60+ in greater quantities.
Other protocol parts..:
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 20/ Lymphatic massage: 2 minute routine, from armpits, down neck, head/face. (Don't feel impact.)
Food: I was already on the low histamine & oxalate + high protein diet (recommended), from past struggles. Also low FODMAP & IgG exclusions:
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 21/ I'm pretty sure that I wouldn't have seen such improvements without moving out of my loft conversion bedrooms.
Seems they had a mycotoxin (mold) issue from rotten roof gable ends. Now mostly replaced. Pressure to return, but cleanup is ??? & VOCs *now* elevated, ironically.
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 22/ From the timing of the reactions (and slight improvements before) I'm thinking the nutrients I added might have provoked sensitivity, or... Detox?
See big thread on my sleep-bounce insomnia reactions:
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 23/ The improvement period mostly wasn't fun; reactions causing/leading to dark hopeless thoughts...
Winter a continuous scramble (without a PC); new capabilities eaten by extra challenges, swamped until April.
My current situation is as tenuous as ever, still stuck on sofa.
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 24/ A big challenge now is a lack of discretionary time to get big research and things like this done.
I need contiguous chunks, but mostly have only slivers in the whirling merry-go-round of meals. To stay on a 24h rhythm. Extra distractions, with no quiet room of my own ,etc.
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 25/ So this mega-post has taken a few weeks to pull together!
Which calls into question posting any of a bunch of other important threads I've been wanting to, for months/years.
Writing this raised more topics - I hoped to dig more into various parts I've crammed in above.
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 26/ Anyway, this post is to ask for input as well as report details of success!
Eg: I'm still lost in mold remediation & chemical sensitivities.
Questions welcomed, to decide what I post next. Requests for data too. Or for me to do a quick comparison of specific things.
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 27/ My tracking spreadsheet has ~150 data columns, including:
- Separate symptoms
- Foods of interest
- Supplements (almost all)
- Imported data
- Key measures & times manually input
- Diary for context, etc.
I can quickly select any 2 fields to graph and correlate.
• 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
This groundwork supports bodily resilience to weather pathogen die-off, etc:
• Stage 2: beating back biofilms. Primarily in gut, but also importantly nasopharynx, skin, all orifices! Overall burden.
Mostly custom made 'antiseptics', but more probiotics in future.
3/n
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 🧵