Discover and read the best of Twitter Threads about #longlyme

Most recents (9)

The establishment creates this problem by first denying the disease, creating a vacuum that quickly fills up with untested treatments & questionable cures. Then they go about trashing their victims who desperately need relief, and the doctors who are willing to treat.
#BTDT #Lyme
It is both infuriating & heart wrenching to watch this scene play out again, with some of the same establishment players engaging in narrative control. Go to ~48:00 for IDSA creep Paul Auwaerter’s word salad tossed at Congress, thx to my friend @PowerOfNeo oversight.house.gov/hearing/invest…
That they have denied, conflated & confused for DECADES #LymeDisease #ME #mecfs #cfs #fibromyalgia and passed them off as psychiatric, and now are doing the same with #LongCovid, should tell you all you need to know about #PublicHealth’s intentions.
Read 4 tweets
In 2020 the #CDC told us: sure, they pushed #IDSA #lymeDisease guidelines for years but they won’t do anything to make up for that now & they don’t care about the chronic long #lyme cases they caused, acute cases will be their only focus &their test works. bit.ly/3ihM6eU
2. CDC makes a big deal of pre-test probability (that patient has #lymeDisease) suggesting their #lyme test would show many false positives if everyone was tested 4 Lyme. So that probability deemed likely after CDC’s told docs for 40 YEARS not to test unless in NE or have rash?
3. Minute 2:30- #CDC said they saw #lymeDisease cases (determined from insurance claims) were from the states they expect them to be. He thinks everyone is stupid. Duh, for 40 YEARS they’ve told #doctors not to test if patient isn’t in one of those states! bit.ly/3ihM6eU
Read 8 tweets
1/🧵 Grasping for help in LC

📍as a #LongCovid patient you admitted on embarking to Turkey for pheresis that
📍this Tx was an UN-established long shot
📍but your life w this syndrome had devolved
📍as a scientist you now found yourself willing
📍while others conduct trials
2/ I see your choices in seeking therapy for #LongCOVID as brave & honest w cautious expectations cognitively & physically.

Most importantly, you’re demonstrating hope & a desire never to give up.

Knowing you, @pamelarbishop, and calling you friend is a gift beyond measure.
3/ For anyone who chides a highly intelligent person for pursuing alternative approaches to solving health problems #medicine scoffs at, seek empathy & read these truth-telling books 📚

@DouthatNYT @meghanor are my teachers…

#LongLyme #MECFS #LongCovid #Fibromyalgia
Read 4 tweets
1/🧵 Micro Clots & Endothelial Dysfunction in Long COVID

Plus new Epidemiology in @JAMA_current some say proves #LongCOVID is a hoax⁉️
 
Truth is…endothelial dysfunction plus inflammation can lead to life-altering brain & body dz.
 
Let’s explore data

Pic H/T @VirusesImmunity Image
2/ Remember that Vascular flow problems don’t occur in isolation from inflammation.

This new piece by @Jamie_Ducharme balances the discussion well.
 
It’s time for great studies & NOT immediate widespread treatment with blood thinners that might harm.
 
bit.ly/3He2FCj
3/ The urgency is that people are living w what amounts to newly acquired #dementia.
 
This WaPo piece starts w “Haze. Slow. Drunk. Lost.”
 
Our patients are adamant that descriptors like #fatigue & #brainfog don’t do justice to what makes them suicidal.
 
wapo.st/3YbRJLQ
Read 22 tweets
1/ I politely and urgently request for the name of Dr Amy Proal @microbeminded2 to also be added. If she is willing, it is essential Dr Proal also be given a seat at the #ME round table. @LucyChappell2 @sajidjavid
2/ Dr Proal is a strong ally of patients with #ME. Having experienced the illness herself, she has a unique understanding of the condition which she is using to inform hypotheses.
3/ Alongside others, she recently published pioneering work which showed #microclots in the blood of those with #ME.
Read 7 tweets
Next is Dr. @aucott_john on Lyme disease and infection associated chronic illness. Lessons from COVID Long Haulers and ME/CFS.
Infection associated illness is not new. #LymeDiseaseAwarenessMonth
Dr @aucott_john quickly noticed the symptoms of #LongCOVID were very similar to #LongLyme. Can occur in patients with mild illnesss. Something similar in how these diseases are affecting humans (P.S. Long-haul does not occur post-flu.) #LymeDiseaseAwarenessMonth
Patients with chronic illnesses are often disbelieved. It is difficult as there are no diagnostic tests to prove "Long haul" is real.
Read 16 tweets
Dr. Jayakumar Rajadas on the striking similarities & possible therapeutic options for #LongCOVID & #LongLyme #LymeDiseaseAwarenessMonth
Dr. Rajadas, a pharmacologist by training, finding doxycycline is not clearing infection in the lab. However, mitomycin & azlocillin are working well. Prefers fewest number of molecules as treatment option (1 or 2 at most). #LymeDiseaseAwarenessMonth
Rajadas finding TLR2 interaction in both Borrelia and SARS-Cov-2 surface proteins, also elevation of quinolinic acid. #LymeDiseaseAwarenessMonth
Read 9 tweets
Next speaker
Peter Rowe, MD: Lessons from ME/CFS that can inform Lyme disease as well as Long COVID
Professor of Pediatrics @HopkinsMedicine
#LymeDiseaseAwarenessMonth Image
Peter Rowe, MD
Postural Orthostatic Intolerance #POTS is very common in ME/CFS.
#LymeDiseaseAwarenessMonth ImageImage
Peter Rowe, MD
Common forms of orthostatic intolerance. Frequently the heart rate will be above 120 BPM. #POTS #NMH
#LymeDiseaseAwarenessMonth Image
Read 14 tweets
One of the big #LymeDisease lies is that it takes two whole days of tick attachment to transmit disease. There have been studies published debunking this lie, but I like to use #tick #biology instead. iai.asm.org/content/70/7/3… Image
And #spirochete #science. Because first of all, you have to know how spirochetes operate. They are able to adapt to different environmental conditions by changing their outer surface proteins (Osps).
#LymeDisease #LymeDiseaseAwarenessMonth

2/
It’s pretty well known and accepted as fact that Borrelia spirochetes express OspA in the tick gut environment and OspC in a human. How do they change their coat from OspA to OspC while they are feeding?
#LymeDiseaseAwarenessMonth
3/
Read 16 tweets

Related hashtags

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3.00/month or $30.00/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!