Latest Twitter Threads by @organichemusic on Thread Reader App

Nov 30, 2023 • 6 tweets • 2 min read

In a new version of my TREAT ME survey, I presented a list of health conditions and asked long haulers to indicate if they had each condition *before* or *after* COVID, if at all. The results suggest that MANY long haulers develop new & disabling conditions post-acute COVID.🧵

For example:

👉5% reported immune dysfunction pre-COVID, while 21% developed it post-acute COVID.
👉1.9% had POTS pre-COVID, while 41% developed it post-acute COVID.
👉0% had ME/CFS pre-COVID, while 46% developed ME/CFS post-acute COVID.
⬇️

Nov 19, 2023 • 7 tweets • 2 min read

People w MIGRAINES may be predisposed to develop ME/CFS or Long COVID.🧵

"Post-COVID headache" is well-known, and many w/ pre-existing migraines notice their migraines worsen post-COVID. This makes sense as both Long COVID & migraines can involve impaired neurovascular coupling. Based on my survey data, it appears a disproportionately large % of pwME & pwLC had migraines before developing ME or LC:

In the general population, ~6% of men & 17% of women experience migraines. In those w/ LC, however, 11% of men and 31% of women reported pre-LC migraines.⬇️

Oct 4, 2023 • 8 tweets • 3 min read

More evidence supports the use of both GREEN TEA and BLACK TEA to battle COVID.

This further strengthens my past recommendation to swish, gargle and drink green (or black) tea for COVID mitigation and prevention.
nature.com/articles/s4159… Study confirmed that EGCG in green tea & TFDG in black tea bind to the RBD of the spike protein & inactivate multiple SARS-CoV-2 variants to varying degrees.

Authors also found that the SALIVA in those who consumed black/green tea candies for 5 minutes reduced viral titers.👇

Jul 4, 2023 • 6 tweets • 2 min read

Dear Friends,

How are you? I've been on a Twitter break, but I wanted to provide an update.

First, the main reason for my break was that I found a more covid-safe school out of state for my child, so I've been traveling and figuring out the logistics for relocating.⬇️ The school has very sophisticated HVAC system with 6-7 air changes per hour! Plus the classroom sizes & overall population are smaller. Overall I feel thrilled to have found this place, but as you all know, moving is incredibly stressful & exhausting even for a healthy person!⬇️

May 4, 2023 • 10 tweets • 4 min read

Linked are articles #1 & 2 in a series of many detailing individual treatment results from #TREATME survey. At a later date, a comprehensive overview & analysis of pertinent data will be shared.🧵

#1: NK, LK, SP
pharmd.substack.com/p/treat-me-sur…
#2: Immunoglobulin
pharmd.substack.com/p/treat-me-sur… OVERALL CONDITION
Over 81% on SCIG (n = 11) & 72% on IVIG (n=29) reported their overall condition improved. Strikingly, >52% reported feeling moderately to much better w/ >27% of the 38 respondents feeling “much better.” This is significantly better than most other surveyed txs!

Feb 19, 2023 • 10 tweets • 6 min read

#TREATME
Check out the charts for #longCOVID & #MECFS to see how enzymes like NK stacked up against aspirin, Plavix, DOACs (example: apixaban), and heparin. I won't do a deep dive until I gather more data & close the survey but wanted to share some data so far!🧵

Very Quick thoughts:
1) Oral anticoagulants alone looks subpar in #pwLC likely bc they only prevent clot formation & don't degrade existing microclots. Goal is to give body a break so it may clear clots on its own, but some may be too sick to achieve this.

Feb 17, 2023 • 7 tweets • 2 min read

The outrage and bewilderment I feel when I see ME/CFS & Long COVID researchers/advocates/HCWs maskless at indoor events...🤯

Maskless LC advocate? Isn't that an oxymoron?

I wonder: How much do these unmasked "allies" actually care about the people they claim to support?
🧵 Are they so ignorant that they believe "masks don't work"? or that vaccines stop transmission? or that Paxlovid is a panacea?

-If they ARE that uneducated, how can their work in the field be trusted?
-And if they ARE properly educated but STILL choose not to mask...😵‍💫

Feb 7, 2023 • 10 tweets • 6 min read

Reviewing preliminary data from the survey (n=1,750!), here are some early observations on a few treatments:

1) Both #pwLC and #pwME benefit remarkably similarly from LDN. Check out the almost identical survey results for overall benefit & number of symptoms improved.

2) People are more likely to benefit from CoQ10 at doses 200 mg or higher, but even then, their overall condition improves only slightly.

2) Both #pwME & #pwLC benefit from anticoagulants (more on this another time - very interesting stuff!).

Feb 5, 2023 • 6 tweets • 10 min read

Hi everyone!

I am very excited to announce that I have finally completed a massive #ME/CFS & #LongCOVID treatment survey entitled "TREAT ME"‼️🎉🤩

If enough people respond thoughtfully, I’m confident we may push research in the field forward!🏇
🧵1/3

surveymonkey.com/r/TREATMEANDLC TREAT ME covers 150+ medications & supplements. Treatments were selected based on published trials, case reports, other relevant studies, results of earlier surveys I’ve written, direct patient accounts (incl lots of feedback from many of YOU🥰), and my own pharmacist intuition.

Jan 10, 2023 • 4 tweets • 2 min read

🚨When assessing cardiovascular risk, history of COVID should be considered a risk factor for cardiovascular disease.

Official treatment guidelines should be updated to account for frequent SARS-CoV-2 reinfections & Long COVID.🧵
jamanetwork.com/journals/jama/… For example:

This atherosclerotic cardiovascular disease (ASCVD) risk calculator estimates the 10-year risk of ASCVD.

One problem: the tool does NOT consider history of COVID & thus likely underestimates risk in this enormous new population.
👇
tools.acc.org/ASCVD-Risk-Est…

Dec 29, 2022 • 7 tweets • 2 min read

"I have COVID! What should my kids & I take to reduce chances of severe illness and Long COVID?"

This post covers my current best bets for speeding up COVID recovery and reducing the chances of Long Covid in adults & kids. I’m focusing on...🧵

pharmd.substack.com/p/i-have-covid… ...accessible evidence-based treatments w/ a good balance of safety, tolerability & efficacy.

I discuss:

3 sleep supplements w/ add'l antiviral benefits
5 best bets
4 hon. mentions

Also included:
Treatment & dosing schedule that optimizes efficacy & avoids drug interactions

Dec 20, 2022 • 8 tweets • 3 min read

Any #pwLC or #pwME tried CITOCOLINE?

Citocholine = cytidine + choline

Cytodine metabolizes quickly to uridine. Choline & uridine cross the blood brain barrier, promoting neuronal membrane phospholipid synthesis & reducing peroxidation.

ncbi.nlm.nih.gov/pmc/articles/P… In COVID and perhaps ME, the blood brain barrier can become leaky, precipitating microglial activation and neuroinflammation.

In vitro studies have found that citocoline improves the endothelial barrier function impaired by hypoxia.

ncbi.nlm.nih.gov/pmc/articles/P…

Dec 17, 2022 • 28 tweets • 10 min read

HIGH-DOSE EPA for LongCovid or ME/CFS?

Recently I spoke w/ an MD who has treated ~40 #pwLC with an Rx omega-3 fatty acid similar to EPA known as icosapent ethyl (IPE, brand name Vascepa) w/ promising results. Turns out, it may help #pwME too.

Details👇
pharmd.substack.com/p/high-dose-ep… Even patients who had suffered from Long COVID for over two years reportedly experienced improvements in sense of taste & smell, fatigue, sleep, joint pain, brain fog, and hair/nail growth.
onlinescientificresearch.com/articles/propo…

Nov 30, 2022 • 4 tweets • 2 min read

👏Good news for those with MCAS or histamine intolerance:

Serrapeptase (SP) inhibits release of histamine & thus it's plausible that SP may improve MCAS symptoms. Furthermore, co-administration of SP with nattokinase may improve tolerability & efficacy.

https://twitter.com/organichemusic/status/1538839448464637953?s=20&t=s_iUTJxuVus53P3lexLx0Q

Update on lumbrokinase:

Some with MCAS were concerned that lumbrokinase production may involve fermentation. According to the VP of the company that manufactures Boluoke, their product does NOT involve fermentation.

Nov 19, 2022 • 4 tweets • 3 min read

Hi!

I'm working on 4 LC/ME surveys. Which one interests you the most? See next few tweets for survey descriptions.

#1:
Covid & #LongCovid prevention: nasal sprays, probiotics, antivirals, & non-pharmacological measures that may ⬇️ infection or severity of/progression to LC. Survey #2:

Anticoagulants/Anti-platelets (including aspirin) in #LongCovid & #MECFS - bleeding risk, what symptoms improved, how long did it take to see improvement, and do symptoms return with stopping? Compare those on triple therapy to those on monotherapy & aspirin, etc

Nov 16, 2022 • 11 tweets • 6 min read

‼️SURVEY RESULTS on LONG COVID TREATMENTS‼️

See 4 charts
1) Treatments with HIGHEST reported efficacy (50% to 78.5%)
2) Treatments middle of the pack
3) Treatments w/ reported efficacy under 30%
4) Worst tolerated treatments (winner: GET, which made vast majority WORSE)
🧵

Some treatments I have already surveyed. Of those, most matched up very closely with this most recent survey. I included whichever survey had the greater sample size.

One such example was VNS which didn't shine as much as I'd expected judging from other surveys & poll.

Nov 14, 2022 • 6 tweets • 6 min read

POLLS! #LC #MECFS #LYME #FIBROMYALGIA #MOLD

I'm analyzing some surveys. Could you please help clarify a result?

For those w/ #LONGCOVID, have VAGAL NERVE STIMULATORS helped your symptoms?

Ex: MedFit, Dolphin, Sensate

#MECFS #fibromyalgia #Lyme #MOLD: see SEPARATE polls below For those with #MECFS, how have VAGAL NERVE STIMULATORS (examples: dolphin, MedFit, Sensate) helped your symptoms?

For #Lyme #Mold & #fibromyalgia, please see next two tweets.

Nov 12, 2022 • 17 tweets • 6 min read

VIAGRA (Sildenafil) for #LongCovid or #MECFS?🧵

I've heard from several #pwLC & ME who reported their symptoms moderately to vastly improved following Viagra use.

Are these just wacky anecdotes or is there scientific basis for these positive effects?

Answer: the latter🧵 VIAGRA (sildenafil) & ME/CFS TRIAL

In 2008, Dr T Friedman hypothesized that Viagra would help ME/CFS patients by improving cerebral blood flow. He carried out a tiny placebo-controlled trial (n=12).

2/x
clinicaltrials.gov/ct2/show/NCT00…

Nov 9, 2022 • 9 tweets • 6 min read

‼️SURVEY UPDATE‼️

How has COVID-19 vaccination affected your #LongCovid symptoms?

With 654 responses to this question so far:
52% no change (or fleeting changes ≤ 1 wk of vaccine)
28% worsened❌
17% improved✅
3% a mix

How long did benefits or relapses last? See next tweet⬇️

Of the 111 who IMPROVED post-vaccination, ~50% improved long-term.

Thus ~8.5% of those vaxxed with #LongCovid enjoyed some degree of LONG-term benefits post-vaccine, while another 8.5% experienced just TEMPORARY benefits (from several weeks up to several months).
2/x

Oct 24, 2022 • 4 tweets • 3 min read

POLL on nattokinase & LK to compare to my longer survey results in hopes of reaching more of you💛Please note🧵of *3 separate polls* for 3 populations: Poll 1 for #pwLC, Poll 2 for #pwME, & Poll 3 for #Lyme.

How has nattokinase or lumbrokinase helped your #LongCovid symptoms? PIE CHARTS from Nattokinase/LK Polls

Much larger sample sizes (~2x) than previous NK/LK survey:

Long Covid: 303
ME/CFS: 81
Lyme: 16

Due to constraints of Twitter poll, I had to clump No change & worse together. To get a better sense of what % felt worse, see survey results🧵

Oct 24, 2022 • 6 tweets • 4 min read

GLUTATHIONE POLL & 🧵

A study of 60 COVID patients found severe glutathione deficiency, a biomarker for oxidative stress.

An RCT is investigating the role of liposomal glutathione, NAC & ALA in Long Covid.

Has liposomal glutathione helped your #LongCovid or #ME symptoms?
1/x Accumulation of excess reactive O2 species (ROS) formed in mitochondria causes oxidative stress (OxS) & cellular toxicity. This occurs not only in Covid, but also Alzheimers, Parkinsons, HIV, diabetes, & cardiovascular dz: all diseases linked in various ways to #LongCovid.🧐
2/x

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