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.
1/ New Belgian study findings consistent with key part of BornFree disease model for #MEcfs, #Fibromyalgia, #LongCovid, etc: we're chronic morphine producers!?!
They found downregulation of μ-opioid receptors, via increased methylation of promoter genes.
2/ I saw this paper via another great thread by @mecfsskeptic (linked above) explaining its shortcomings too.
It appears entirely independent, not mentioning aspects modelled by Josh (or experienced by participants) as inhibiting ALDH breakdown of DOPAL, etc...
And substrate inhibition via acetaldehyde from microbes: eg Candida, Aspergillus (both common OAT indications), H2S producers (eg B.Wadsworthia, in BiomeSight), H.Pylori, Bartonella, etc.
1/ IgG (antibodies) food intolerance panel - my first yearly test since major #MEcfs improvements. #MEcfsEgress?
a) Overall far fewer reactions detected than a year ago.
b) Dairy antibodies finally gone after 12 years of exclusions!
c) Reactions again cover suspect foods...
2/ d) But reactions haven't totally taken me out of action the next day (as previous years).
- Eggs: maybe coincided with environmental reactions, too.
- Macadamias : suspect big bag went rancid/moldy and caused mild food poisoning.
- Pineapple: no idea (no fruit mix or enzymes).
3/ Last year's results for comparison:
Different layout, with the second page (above) previously spread out over 10 pages, awkwardly.
@patientled @IsabelRamirezRD 2/ Braeden Charlton - Long COVID & MEcfs:
- Poor oxygen extraction, earlier lactate (& steeper HR slopes).
- Retain muscle mass vs deconditioning = severe atrophy.
- Poor mitochondrial function vs deconditioning = loss of mitochondria.
- Basement membrane thicker (biomarker?).
@patientled @IsabelRamirezRD 3/ Dr. Caroline Dalton - Microclots:
- Recently infected have my clots than patients without problems.
- Counts normally take ~1 year to fade.
- Only half of LC show high counts (not sensitive marker).
- Meds reduce clots, but often not symptoms.
- Clots indicate inflammation.
• 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