Discover and read the best of Twitter Threads about #LymeDisease

Most recents (11)

As a journalist that has also had #lymedisease, I can understand why a lot of patients are frustrated with this article.

It spends 95% of its sizeable length fixated on quackery, but not the US health care treatment failures driving desperate patients to these options.
Up to 20% of Lyme patients continue to have symptoms post antibiotic treatment. The US health care system has NO idea why or how to treat them.

That's a 20% treatment failure rate on a raging epidemic driving desperate patients to quackery. THAT is the story.
So many journalists new to #lymedisease see all the desperate patients trying dubious alt-health nonsense, and get oddly and exclusively fixated on that.

But the US health care system is TERRIBLE to these patients. Testing is poor. Misdiagnosis is common.
Read 9 tweets
I was bitten by a #tick in 2011 & it's turned my worle upside down!
I was a practicing trial atty & am now on a walker.
I contracted E. Chaffeensis, Rickettsia of unknown et., & #Lyme.
I wasn't treated for 11 mos. By then, the tick bacteria had invaded my spinal fluid/brain.
Read 12 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please help us! 😭
Can't afford next mos.' RX @$198/mo necessary to digest/absorb food.
My now 77-year-old Mom is my caregiver. We get $64/mo for food (long gone) + trying to save home.
#Lyme #SaveOurCare
#Fibromyalgia
#IBD
Even $5 or $10 will help + RTs are free. 🙏
I was bitten by a #tick in 2011 & it utterly destroyed my life.
I contracted E. Chaffeensis, Rickettsia, & what was later found to be #Lyme.
I wasn't treated for 11 mos. By then, the bacteria had invaded my spinal cord + brain.
#LymeDisease #healthcare #tick #foodstamps
Read 16 tweets
New article in the Guardian highlights how Lyme can completely destroy one's life. The author got several details about the Lyme vaccine wrong.
In the following thread I will provide some facts:
theguardian.com/science/2019/j…
LYMERix Vaccine Myth: "The data suggests it was highly effective, protecting against the disease in almost 90% of cases."
Fact: The vaccine required 3 doses. It was reported to be 50% effective after the second dose and only 73-78% effective after the third dose.
LYMErix Myth: "The death knell for LYMErix proved to be a theory that the vaccine could induce autoimmune reactions in humans."
Fact: Just prior to FDA approval of LYMErix, Dr. Allen Steere published his research documenting auto-immune responses to OspA cont...
Read 14 tweets
1. This is a very useful thread #MedTwitter because it tracks common reasoning errors that lead doctors to readily accept psychosomatic dx for #MEcfs and other contested conditions like #EhlersDanlos, #mito, #dysautonomia, #LymeDisease, etc.
2. Start with the duty that defines your profession @strauss_matt - to ensure that every patient with a need for med care (medical testing, treatment, or support) receives it when she seeks it from you. Mistaken psychosomatic dx violates that duty in every case where it occurs.
3. No doctor should have to be told to err on the side of medical caution. Your job requires (a) humility about the limits of dx science and (b) historical awareness of immense suffering caused by psychological explanations for #MS #epilepsy #PepticUlcer #Parkinsons #lupus etc.
Read 8 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please take a moment & read our story. 💔
NEWS!
I just found out that I will be getting $514/mo for SSI but that has to go towards our home & bills/food.
I still need help w/$198/mo RX.
Also received notice that foodstamps will be CUT to $15/MONTH! 😭
Who could possibly eat on 50 cents a day or survive on $17.13/day?
Read 20 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
In 2011 I was bitten by a tick. I have a brain tumor/IIH & such severe intestinal damage that I CANNOT digest food w/out enteral food RX. It's $198/wk, even w/pharma discount. My (now) 77-year-old Mom is my caregiver but she can't afford it. Don't have enough to eat/save 🏡. 😭
I contracted E
Chaffeensis, Rickettsia of unknown etiology, & #LymeDisease. I just had 8th spinal tap to relieve pressure on my brain.
I'd been on antibiotics for 19 yrs.
I caught Coxsackie B4 virus-a cousin of polio. Lost most use of (L) side.
I wasn't treated for 11 mos. #Lyme
Read 17 tweets
As those with #lymedisease await IDSA guidelines--the title of this Ioannidis article says it all: "Professional Societies Should Abstain From Authorship of Guidelines and Disease Definition Statements" ahajournals.org/doi/10.1161/CI…
Why you ask? "designated guideline coauthors share in the society-wide power game across a large portfolio of guidelines . . . Tens of thousands of society members then cite these articles. This creates a massive, clan-like, group self-citation network."
Why else? "guidelines . . . promote the careers of specialists, in building recognizable & sustainable hierarchies of clan power, in boosting the impact factors of specialty journals & in elevating the visibility of the sponsoring organizations and their conferences"
Read 8 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please read my mom's gofundme & help in any way possible. We are struggling to survive. RTs help. 😭
In 2011 I was bitten by a tick (after being on antibiotics for 19 yrs). My rescue dog was bitten & died the next day. Wasn't treated for 11 mos- I had E. Chaffeensis, Rickettsia, & prob.#Lyme in spinal fluid & brain. Caught Coxsackie B4, cousin of polio & lost most use of L side.
Read 10 tweets
Dr L in the buzzfeed article says humans make alpha-gal sugar, But, here’s a podcast & transcript w/Dr Commins, Prof at UNC Allergy & Immunology who was part of the discovery team in 2009 & is an expert on AG. He says humans don’t make alpha-gal sugar./1 apple.news/A-Ybbhe0lQXuD_…
Dr Commins also clarified that the 2009 discovery involved the lone star tick but that it can be caused by other ticks. His research is ongoing. I disagree w/him on 2 things:
1) I Do think anyone w/a tick bite should be tested for the allergy apprx 6 weeks after the bite.
And/2
2) The reaction does not always cause itching. I’ve found the random palm itching to be more common than torso hives, but, even more common than that is no hives. And, I agree that the allergy response, unlike other food allergies, is delayed. Dr C say apprx 4 hrs after/3
Read 9 tweets
This Republican control over all parts of our government defies comparison. On second thought, it feels like a Biblical punishment..Remember the 10 Plagues of Egypt?
#RepublicanPlague #CrimesAgainstHumanity #RiseUp
First, the waters of the land of Egypt were to be turned into blood....
The Clean Water Rule protected smaller bodies of water, like streams and wetlands, from discharges of all kinds of pollutants. But not anymore: #RepublicanPlague #CleanWaterAct
The EPA has delayed implementation for 2 years as the agency “clarifies” (read: eliminates)the rule.The decision is a clear gift to industrial polluters who loudly protested the reg in 2015 & GOP lawmakers who have falsely claimed the rule regulates “puddles on private property.” Large freighter ship spilled red and yellow toxic sludge into waterway. People in small boats float on the spill.
Read 52 tweets

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