I wrote this very personal thread, despite hating opening myself up to the inevitable BS that will come from discussing 1) #LymeDisease in general & 2) anything to do w/ vaccines for 2 very specific reasons
Discussions of the Climate Crisis has brought about an uptick in posts about Lyme Disease & blaming antivaxxers for there no longer being a Lyme vaccine
I can 100% assure that antivaxxers had almost nothing to do w/ LymeRix being taken off the market
🧵 4/ A very long history of Bad Faith Business practices & willfully ignoring the science caused LymeRix to be taken off the market
I know this because I’m one of the almost 500 ppl still suffering w/ the incurable autoimmune arthritis that I developed as a direct result
🧵5/ I’m not an antivaxxer. I’m vaxxed & boosted to the hilt in every respect even though I do suffer every single day from the effects of the #LymeVaccine.
I’m Pro Science (which is why I understand the difference between a bad vaccine product & the importance of good ones)
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It’s incredibly frustrating to still be fighting for basic care for patients w/ Lyme & the Associated Tick Borne illnesses 22+ yrs later w/ patients are still being told they’re crazy & it’s all in their head
While having almost everything you say written off as
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& lumped into the fringe, delusional or anti science/ anti vax pool
The science is w/ us. The f*cked up documentation is with us. But we’re so exhausted & sick of fighting that, unless it’s really, really flipping important, there’s no point in wasting our breath
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Which leads me to Reason #2
Covid is the only other illness that has been completed politicized & I’m seeing the very, very real potential for Long Covid Patients to be forced down the very same long & painful path that chronic Lyme patients have walked for decades
🧵 9/ We ABSOLUTELY, CANNOT allow that to happen
Just like my life was shattered by a simple little tick bite, Long Covid patients have done nothing but get caught in the middle of a worldwide pandemic
We need to learn from what has been done w/ Lyme (@SenBlumenthal) & make
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& make sure that the same market forces don’t bring the same devastation to bear
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Anyway, here’s the post I’ve started regarding my #Lyme journey. I hope by posting it the people who need to hear it, do
It’s still a work in process - it’s hard for me to dredge it up & get hit w/ just how much my life changed but I’m trying so bear with me
🧵 13/ There are 2 organizations that are extremely good at fighting for Lyme patients & disseminating accurate information to patients & physicians alike
I don’t talk about this much on Twitter because honestly it’s my escape from thinking about or dealing w/ the effects of Lyme disease & the associated tick borne illnesses
The first time I was diagnosed w/ Lyme disease was in 1982 when I was 10 yrs old.
I was fortunate to have been diagnosed at all. I contracted from a tick bite I received on summer vacation in the Hamptons. I was given some antibiotics & told I’d be fine
I’m a Lyme disease patient & now an educated advocate for 22 yrs now
Dr Ryan may be well intentioned but this thread is just another example of the inadequate & politicized BS in the fight for Lyme patients to remove adequate basic treatment
Due to the 30 yr disinformation campaign that has been well documented that came out of Yale, Dr Alan Steere, the first patented biological material in US history (an outer surface protein on the Lyme disease spirochete, Borrelia burgdorferi -OsPA)
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Lyme patients have been written off, lumped in w/ antivaxxers, dismissed as crazy & generally abused while slowly losing their lives
I recommend that Dr Ryan & EVERY other physician in the US (as Lyme disease has been so under reported & so under diagnosed for more than 30 yrs
Let Republican SC Legislator Nick Caracappa OFF SCOT FREE for violating a restraining order, then strangling his estranged wife while threatening to kill her
Before that was Suffolk County Dem Chair Rich Schafer basically endorsing Republican DA Ray Tierney instead of
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the excellent Democratic DA we had, Tim Sini, because he had a conflict of interest between being the @TownOfBabylon Supervisor & the @SuffolkDems chair
She worked mandated shifts, held the tablets for patients while their families said goodbye & watched people die droves. She couldn’t see her family for almost 4 mos because I’m immunosuppressed & she was afraid she would kill me
Instead @leezeldin jumped on the Trump disinformation bandwagon, the Kushner PPE theft ring & the holding hostage of aid to NY unless @NewYorkStateAG dropped her investigation into the Trump Org
& NYers were willing to literally give their lives rather than
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Zeldin & Esposito’s silence is deafening - made even more so given that they claim to be running on a #BackTheBlue#ToughOnCrime platform
Given the increased danger LEO’s face in responding to DV calls & the extremely high rate of Officer Involved Domestic Violence
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& the Zeldin/Esposito campaign making distorted violent crime statistics first/ foremost, I think it’s time they faced questions regarding a real crime epidemic w/in #NewYork’s law enforcement community -