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
#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.
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
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
📍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.
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
@DouthatNYT @meghanor are my teachers…
#LongLyme #MECFS #LongCovid #Fibromyalgia
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
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
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
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
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
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.
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
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.
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
Next speaker
Peter Rowe, MD: Lessons from ME/CFS that can inform Lyme disease as well as Long COVID
Professor of Pediatrics @HopkinsMedicine
#LymeDiseaseAwarenessMonth
Peter Rowe, MD: Lessons from ME/CFS that can inform Lyme disease as well as Long COVID
Professor of Pediatrics @HopkinsMedicine
#LymeDiseaseAwarenessMonth
Peter Rowe, MD
Postural Orthostatic Intolerance #POTS is very common in ME/CFS.
#LymeDiseaseAwarenessMonth
Postural Orthostatic Intolerance #POTS is very common in ME/CFS.
#LymeDiseaseAwarenessMonth
Peter Rowe, MD
Common forms of orthostatic intolerance. Frequently the heart rate will be above 120 BPM. #POTS #NMH
#LymeDiseaseAwarenessMonth
Common forms of orthostatic intolerance. Frequently the heart rate will be above 120 BPM. #POTS #NMH
#LymeDiseaseAwarenessMonth
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…
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/
#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/
#LymeDiseaseAwarenessMonth
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