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…
Other potentially beneficial effects of citocoline:
-stimulates ACTH & may ⬆️ cortisol
-improves expression of SIRT1, thereby supporting nerve cells, ⬇️ NF-KB & ⬆️ autophagy
-enhances norepinephrine, serotonin, dopamine, & acetylcholine
-improves cerebral blood flow
Mitochondrial repair, too?

Citocoline may also support mitochondrial membranes and promote cardiolipin synthesis by inhibiting PLA2, an enzyme that metabolizes cardiolipin.

pubmed.ncbi.nlm.nih.gov/14580322/
IDEALE assessed the safety & efficacy of citicoline 500 mg 2x daily in 349 patients aged 67-90 with mild vascular cognitive impairment.

Controls showed cognitive decline whereas the citocoline group slightly improved per mini mental status exam scores.

ncbi.nlm.nih.gov/pmc/articles/P…
A small (n=60) RCT investigating citocoline's impact on attention deficits in women aged 40-60 found that citicoline at doses as low as 250 to 500 mg daily over 28 days nominally improved attentional deficits associated with CNS disorders.
researchgate.net/publication/26…
ADVERSE EFFECTS

-GI irritation
-Possible neuropsych side effects (changes in mood, sleep patters) considering that citocoline does seem to affect neurotransmitters. It could be a positive or a negative depending on the individual.
DOSING

Considering the possibility of neuropsychiatric side effects, starting at a conservative dose of 250 mg once daily is warranted.

While some may notice immediate effects, others may require a up to 6-8 weeks to notice benefits.
pubmed.ncbi.nlm.nih.gov/35053804/

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More from @organichemusic

Dec 17
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…
This MD also treated ~140 acute COVID pts w/ IPE and reportedly none of them developed LC. The MITIGATE trial is currently investigating the ability of Vascepa (IPE) to reduce morbidity & mortality in a cohort of adults with URIs including SARS-CoV-2.
ncbi.nlm.nih.gov/pmc/articles/P…
Read 28 tweets
Nov 30
👏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.

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.
Furthermore, Dr. Kwok confirms that lumbrokinase activity is reduced in acidic (gastric) pH; thus Boluoke includes acid resistant coating. This further supports my hypothesis that these proteolytic enzymes (NK, SP, LK) work better with enteric coatings.
Read 4 tweets
Nov 19
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
Survey #3:

Investigates the top non-pharmacological measures from previous survey (vagal nerve stimulators, HBOT, craniosacral therapy, etc) in #LongCovid and #MECFS. Which symptoms did they help or hurt? May include sections for other post-viral illnesses if interest.
Read 4 tweets
Nov 16
‼️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.
One BIG surprise:

When I tallied responses from the Viagra Poll, results were striking: of the 79 who took PDE5Is w/ LC or ME, 72% reported benefit & 30% reported that the drug helped "a lot"!

Could this be random tweeters trolling or is this accurate?

Warrants more study!
Read 11 tweets
Nov 14
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.
For those with #LymeDisease or #mold exposure, how have VAGAL NERVE STIMULATORS (ex: Dolphin, MedFit, Sensate) helped your symptoms?

For #Fibromyalgia, please answer poll in NEXT tweet.
Read 6 tweets
Nov 12
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…
Change in Fatigue Impact Scale questionnaire suggested benefit with Viagra over placebo. However, only 5 on Viagra & 6 on placebo completed the trial & the study was never published.

Dosing:
Week 1: 25 mg TID*
Week 2: 50 mg TID
Weeks 3-6: 100 mg TID
*TID = 3 times daily

3/x
Read 17 tweets

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