Discover and read the best of Twitter Threads about #ldn

Most recents (4)

Sharing out some results from our ai-powered #LongCovid site:
* Most popular
* Most effective overall
* Most effective for POTS, Fatigue, Brain Fog, and more

These results are *directional*, but in the spirit of empowering patients with more information, we wanted to share.

🧵
1/ Sources
* Twitter
* Reddit: 2 LC subs, plus r/cfs, r/pots, r/mcas, r/eds, and r/dysautonomia

We collected >35k treatment reports, and read them w/ an AI model to (imperfectly) see if people improved/worsened.

We show all raw data and inferences in case you want to vet!
2/ Top 20 most popular

This helps us gut check the data. Indeed, we see some familiar faces - antihistamines, nattokinase, LDN, probiotics, etc.

The beta blocker reports are mostly coming from r/pots, and the steroid reports are largely from r/mcas.
Read 13 tweets
1/ I'm approaching my 2 year anniversary of #LongCovid . I thought I would share my journey to recovery. This is not medical advice, just my story. If it helps one person it's worth it. I learned more from Twitter than anywhere else on this journey. #microclots #teamclots #pots
2/ I got COVID November 2020. Night 1 I had the most excruciating headache of my life. It felt as if someone was drilling into my forehead.  The headache dissipated after 2 days only to return day 13.  Initially I had some minor brain fog, like putting Ice Cream in the fridge etc
3/ I never lost my sense of taste or smell. I had a minor fever/body aches for 24 hours. Day 4, I started having heart rate issues. I would be resting on the couch and get up to walk to the bathroom and my heart rate would jump to 130.
Read 26 tweets
1. thread.

Nice @FrontPediatrics paper providing guidance for docs and #pwME in the diagnosis and management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#MedEd #MedTwitter #chronicillness #chronicpain #SickNotTired
frontiersin.org/article/10.338…
2. #MECFS is commonly misdiagnosed as a #somatic disorder

#pwME "..have been humiliated or dismissed by other providers, so [doctors] will need to be.. nonjudgmental.. & acknowledge that #MECFS is not a #psychological condition but a real illness"

frontiersin.org/article/10.338…
3. #MECFS symptoms can be diverse, complex, fluctuate and overlap with many other conditions making the diagnosis difficult

This @FrontPediatrics paper lists 33 (!) co-morbidities commonly associated with #MECFS

#MedEd #MedTwitter #pwME #SickNotTired
frontiersin.org/article/10.338…
Read 8 tweets
thread

Remarkable @bmj_latest @BMJCaseReports report documenting the extreme lengths a bedbound patient went through to get a diagnosis of #POTS, #MCAS, #SIBO and #tachycardia

read her story here

#MedEd #MedTwitter @MayoClinic
casereports.bmj.com/content/2018/b…
2. After suffering for 16 years, seeing 19 docs with repeated misdiagnosis:

Her cardiologist couldnt diagnose #POTS

Her gastroenterologist couldnt diagnose #SIBO

Her immunologist couldnt diagnose #MCAS

Her neurologist referred her to a #psychiatrist!

casereports.bmj.com/content/2018/b…
3. Patient: the "neurologist was out of ideas and suggested I get a psych evaluation, which I declined"

the patient <referred herself> to @MayoClinic

#SickNotWeak #chronicillness #chronicpain #MedEd #medtwitter

casereports.bmj.com/content/2018/b…
Read 10 tweets

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