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.
For those with #Fibromyalgia, how have VAGAL NERVE STIMULATORS (ex: Dolphin, Sensate, MedFit) helped your symptoms?
Some results on TREATMENTS surveyed in the big LC survey (n=1,336!) released a few weeks ago will be posted soon. I'm comparing the results to previous polls & surveys. So far they are mostly consistent but there were a few surprises, hence these polls to clarify! THANK YOU!🥰💐
Results from the polls in PIECHART form here. Very consistent efficacy across disease states.
Chart 1: #MECFS (n=34, 50% benefitted)
Chart 2: #Fibromyalgia (n=16; 50% benefitted)
Chart 3: #LongCovid (n=127, 57.5% benefitted)

Didn't include Lyme/Mold due to sample size. ImageImageImage

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More from @organichemusic

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)
🧵 ImageImageImageImage
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. ImageImageImage
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! Image
Read 10 tweets
Jun 24
Could mast cell stabilizer CROMOLYN reduce neuroinflammation & improve cognitive function in some cases of Long Covid & ME/CFS?

A brief exploration into the relationship b/t mast cells, microglia, & neuroinflammation, and how cromolyn (available Rx&OTC) might reduce symptoms.🧵
Mast cells release inflammatory molecules in response to pathogens which in turn activates microglia, the primary neuroimmune cells in the CNS. Microglia make up ~5-20% of total brain cells. They secrete cytokines (notably TNF-α) & chemokines in response to changes.
This 2021 study found that microglial activation was the most common brain pathology found in deceased COVID patients (42.9%, or 79 in 184). (15% had microclots in brain tissue.)
ncbi.nlm.nih.gov/pmc/articles/P…
Read 18 tweets
Jun 22
Update: Today's MD appt was a flop.

Called beforehand & asked:
Q: Could I wait outside instead of in waiting room?
A: No.
Q: Could I bring & use my HEPA air purifier in the appt?
A: No.
Finally I convinced them to let me make a telehealth appt, but they claimed there was no way to do it during today's scheduled appt, so I'd have to wait months to be seen via telephone.

After more pleas and waiting on hold for 40 minutes, I managed to get the call today.
I went over my symptoms with MD, but did not tell him I suspect ME/CFS, reactivated EBV, etc, bc I wanted to see what he'd say.

He only asked me about my mental health history, specifically bipolar disorder & manic episodes just bc I said in 2017 I went 2 days w/o sleep.
Read 7 tweets
Jun 20
Study from 1999 (‼️) showed an association b/t hypercoagulable states in ME/CFS & FM.
Elevated fibrinogen & blood viscosity were most common in this population vs normal levels in controls.
Lumbrokinase & Nattokinase have been shown to reduce fibrinogen & blood viscosity.🤔
Authors noted similarities to APS: "Since this hypercoagulable state does not necessarily result in a thrombosis, but rather in fibrin deposition, we suggest that an alternative name for this Antiphospholipid antibody process would be immune system activation of coagulation..."
A May 2022 study gave a nod to this 1999 study when their small trial showed a similar connection between ME/CFS and the autoimmune clotting disorder APS.👀

Among other things, ß2GPI, the primary antigen in APS, was significantly ⬆️in subjects w/ post-viral chronic fatigue.
Read 9 tweets
Jun 10
Lots of questions regarding drug & supplement interactions with nattokinase. I will address those questions in an upcoming thread. Stay tuned!

So far, I've had Qs on:

SSRIs
Fish oil (DHA + EPA)
Curcumin
Aspirin

Any more questions re: interactions, please ask here.
SSRIs: slight additive risk; monitor for abdominal cramps or blood in stool

The SSRIs with highest bleeding risk (still relatively low) are paroxetine, fluoxetine, & sertraline. GI bleeding is most common.
FISH OIL (EPA, DHA): likely safe; negligible risk
A systematic review (2017) of 52 studies (many RCTs) found that while fish oil does decrease platelet aggregation in healthy subjects, it did not increase risk of bleeding in surgical pts. ugeskriftet.dk/dmj/no-impact-…
Read 10 tweets
Jun 10
Many Long Covid and more recently ME/CFS sufferers have turned to natural clot busters (nattokinase, lumbrokinase) since new studies have revealed that many with these diseases have microclots. A few words on their dosing, efficacy and safety. 🧵
Funnily, nattokinase is not a kinase; instead, it is a serine protease. Proteases are enzymes that cleave (break) peptide bonds in proteins. Another example of a serine protease is tissue plasminogen activator (tPA). tPA cleaves plasminogen to plasmin and plasmin dissolves clots.
This double-blind, placebo-controlled crossover study in 12 young & healthy Japanese men found that a single 2000 FU dose of NK activated multiple fibrinolytic & anti-thrombotic pathways: aPTT ⬆️, D-dimer ⬆️ & tPA activated. ncbi.nlm.nih.gov/pmc/articles/P…
Read 14 tweets

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