LongCovidPharmD Profile picture
Aug 24, 2022 8 tweets 3 min read Read on X
❗️SURVEY UPDATE WITH RESULTS❗️

Check out some results from the most recent two surveys including the following supplements:

NK/LK +/- SP (n=85)
Antihistamines (n=210)
Vedicinals (n=44)
Tollovid (n=48)
NAC (n=134)
Niacin (n=161)
B-complex (n=207)
EGCG (n=94)
Cromolyn (n=62)
Each of three symptom groups includes:

1) what % of respondents benefitted over all levels of reported improvement (≥15%)
2) what % of respondents experienced worsening of symptom
3) what % of respondents benefitted at least moderately, *excluding* slight improvements (≥35%)
Please note the following caveats:

1) Results may be slightly skewed bc some respondents answered that a supplement they didn't take had "no effect" rather than simply skipping the question. Initially I tried to correct for this but it was impossible to discern in some cases.
2) Note significant differences in sample sizes between supplements. Supplements with much lower sample sizes (Vedicinals = 44, Tollovid = 48, and cromolyn = 62 respondents) may be less accurate, so take those results less to heart.
First up is FATIGUE.

Top 3 *overall* (≥15% improvement) are:

🥇NK/LK +/- SP (no sig dif whether or not SP was included)
🥈Antihistamines
🥉Niacin

Notably, Vedicinals shows the greatest *worsening* of fatigue but also jumps into 🥇 when comparing efficacy w/ ≥35% improvement. ImageImageImage
Second up is COGNITIVE FUNCTION

Top 3 *overall* (15-100% improvement) are:

🥇NK/LK
🥈Antihistamines
🥉B complex

Vedicinals shows the greatest *worsening* of cognitive effects, but also jumps into 🥈 when comparing efficacy w/ ≥35% improvement. ImageImageImage
Last up (for now) is heart rate variability & POTS-like symptoms

Top 3 *overall* (15-100% improvement) are:

🥇NK/LK
🥈Antihistamines
🥉NK/LK + SP

Yet again, Vedicinals shows the greatest *worsening* of HRV/POTS, but jumps into 🥈 when comparing efficacy w/ ≥35% improvement. ImageImageImage
I may add more analysis later when more time.

With these results, it opens up opportunities for better & more targeted surveys. May want to focus on the top supplements, add a few new ones, & go into more details about dosing & other symptoms. Interested in another survey?

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More from @organichemusic

Nov 30, 2023
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.🧵 Health conditions before & after COVID in Long COVID patients (n = 214) - summarized in tweets below
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.
⬇️
👉27% had migraines pre-COVID, while 24% developed migraines post-acute COVID.
👉2.8% had MCAS before COVID vs 16.4% post-acute COVID
👉1.4% had clotting disorders pre-COVID, while 11% developed clotting issues post-acute COVID.
⬇️
Read 6 tweets
Nov 19, 2023
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.⬇️
It's nearly the same in the ME group w/ 12% of men & 31% of women reporting pre-ME migraines.

Another 24% & 21% of those w/ LC or ME reported experiencing new-onset migraines after developing LC or ME.

Migraines in ME & LC are a big deal & warrant further study!

Treatments⬇️
Read 7 tweets
Oct 4, 2023
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.👇 Figure illustrating that compared to dextrose 2% in water, sencha, matcha, black tea and bottled green tea beverage at final concentrations of 90% of original tea beverage significantly reduced viral titers of SARS-CoV-2.
Compared to placebo candies, the black & green tea candies reduced viral titers by ~1000 order of magnitude. The effects lasted for about 5 minutes, wearing off likely due to quick saliva flow rate.
Graphical depiction showing that green tea candy significant reduces viral titers ~1000x over a 5 minute timespan whereas placebo does not
Image
Read 8 tweets
Jul 4, 2023
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!⬇️
The school is expensive as is the cost of living in the area so I've been looking for a job to help cover tuition. However, retail pharmacies don't want masked pharmacists & remote jobs are hard to find, esp with so many disabled #pwLC competing for part-time remote positions⬇️
Read 6 tweets
May 4, 2023
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! Survey result chart showing...Comments from survey respon...
TIME TO IMPROVEMENT
Responses varied substantially. 9 out of 25 (36%) respondents reported it took just 1 to 2 rounds of therapy before starting to feel better, while on the other extreme, 8 out of 25 (32%) respondents reported that over 10 rounds of IgG were required. Chart showing what was desc...
Read 10 tweets
Feb 19, 2023
#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.
1) cont..
Also note small sample size, so can't draw strong conclusions yet.

2) Many #pwLC may have hyperactivated platelets so it would stand to reason than antiplatelet meds would help. While just 38% reported aspirin ALONE helped, 60% benefited from dual antiplatelet therapy.
Read 10 tweets

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