TW recovery story #LongCovid

Fatigue was improving slowly &no PEM since Dec (doxy for Bartonella) but just this month, finally clicked the last piece into place - cortisol.
Now back to 100%
Thought I’d share for anyone interested, and how it impacted my hormones (DUTCH test) V low overall cortisol output. Low morning and fairly flat free cortisol levels + low DHEA output from adrenals.
Resulted in lower T metabolites also, and lower oestrogen than I’d had before.
(Melatonin was high as I supplement 2-4mg to sleep and did not stop for the test)

Many (most?) anticoagulants for #LongCovid have negative effects on bone - clopidrogel, apixaban, heparin. Suppression of osteoblasts, bone forming cells.
Other: nicotine also linked with ⬇️ bone density
Famotidine and other PPIs due to malabsorption

1/ ⬆️ bone density: Metformin increases osteoblast activity and differentiation, decreases osteoclast (cells that break down bone)



Low dose aspirin also associated with higher bone mass, influences osteoblasts and osteoclastsncbi.nlm.nih.gov/pmc/articles/P…

Treatment of #LongCovid with low molecular weight heparin/ Enoxaparin sodium?
Potential anticoagulant, anti-viral and anti-inflammatory effects at vascular endothelium 🧵
Has brought me from FUNCAP 3.3 (moderate or mild/mod) to 5.17 (mild +) in 7 weeks 🎉 Anticoagulant: ‘Enoxaparin sodium is utilized for prevention and treatment of venous thromboembolism. This agent works by potentiating antithrombin to inhibit factor IIa and factor Xa in the coagulation cascade’ (I believe lesser effect on IIa than regular heparin so mostly Xa)

Okay so I wasn’t going to post as I am sure the PEM-gods will smite me but either way, even if I crash, there is still something magical happening with heparin & I want you folks to know!
Energy, stamina, cognitive capacity, improved HR!!
Details& confounders in 🧵 #LongCovid 6 weeks ago I started low molecular wt heparin/ clexane 20mg injections (Had one crash, took short break)
Also..
- nicotine patches low dose 1.75mg 5 days on/2 off
- sublingual magnesium & zinc
- phosphatidylcholine
(doubt last two have made much difference)
- stopped arginine

Mitochondrial supports/ stack 🧵 Support energy production pathways + health of mitochondria. There are *many* options, some are *expensive* - not medical advice, just info.
!NB lots of contraindications exist! Citations not incl for all here & some are queries? #LongCovid #mecfs B complex: including B5
B1 / thiamine: 100mg - this has been used at higher doses in some studies eg fibromyalgia but think this is for different therapeutic pathways, not just fuelling energy production
ALA: ideally R-ALA as better absorbed, 200mg tid / 600mg

A unifying *hypothesis* to explain the seemingly miraculous response to #TheNicotineTest and how it might prevent PEM in #LongCovid #vaccineinjured #mecfs - a root cause approach to PEM by modulation of the Default Mode Network in the brain. Very long thread incoming!🧵 DMN is activated in the ‘off setting’ - meditation, day dreaming, no chores get done, no brain trigger to adapt to environment, may relate to feeling of being unable to talk/move/ respond in a crash. DMN is deactivated during activity, action, cognitive/ exercise

Is there a link between @remissionbiome and #TheNicotineTest? Could the DMN be a major key? Going to post some threads/ tweets here and then go off to research! Anyone who has the interest and the spoons, join in! #LongCovid #mecfs #pwME #vaccineinjured DMN regulation in PEM/ link to the health rising article in @tessfalor ‘s *excellent* thread here

https://twitter.com/tessfalor/status/1670539825664118784

Mitochondrial fission by Drp1: Imagine tying elastic band so tight around the mitochondria it breaks in half. As usual there’s a balance (recycling process) but excess fission linked to mitochondrial abnormalities in metabolic & neuro degenerative diseases… 🧵 #LongCovid #mecfs Viruses *including HHV-6* can directly induce mitochondrial fragmentation through Drp1.
Steps to start? support the remaining mito to make enough energy & support mito biogenesis, inhibit Drp1, and tackle viruses to turn off the driving trigger (easier said than done)

The AXA1125 mimic I am taking: would like to help if others want to make it and can’t find info in sprawling tweets/ threads. Info here on how to make it, and a nice explainer video with reference to reduced lactate levels with AXA1125 too! 📣 #TheAcidTest Original dosage from this paper: journals.lww.com/ajg/Fulltext/2…
And study in long Covid at 6 sachets per day in this: thelancet.com/journals/eclin…

Finally got cancellation with my #LongCovid consultant. And it’s official, I have won the DOCTOR LOTTERY. He is just fantastic, get to him if you can 🇮🇪(Seamus Linnane, Beacon, Dublin). See thread for low blood volume hypothesis if it helps anyone, Dr agreed & we made a plan 🙌 Low O2 exchange in the lungs - low DLCO he says is quite possibly structural/ always been there. He had a hypothesis that this might be one predisposing factor in some LC cohort! I wonder could it be low blood volume, as one of the determinants is capillary blood volume?

#TheAcidTest 📣 Guide for at home lactate testing #pwME #LongCovid #vaccineinjured ! Please note your results, questionnaire to follow. If interested in US bulk buy/device sharing please DM @ales_frost
Please use #TheAcidTest if tweeting results. Join in! forms.gle/sDBr2BG8udKG4J… UK device and *Ireland* device (this does ship to Ireland!) glucorx.co.uk/shop/glucorx-x…
Only £20 plus shipping. Added lactate strips currently free as due to expire on 24th May 23

@remissionbiome / antibiotic update + new experiment connecting microclots - O2 delivery - lactate - mitochondrial repair - AXA1125 mimic. See🧵 for amounts to make mimic product ⬇️ ⬆️ lactate producing bacteria in gut despite 4 mo of prep&repair which did improve leaky gut and dysbiosis. Wanted to reduce via antibiotics after herbal was insufficient. Did not have any remissionbiome style event but did not do same prep/ have all same products…