Discover and read the best of Twitter Threads about #lymedisease

Most recents (24)

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.
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!
Read 8 tweets

I'm analyzing some surveys. Could you please help clarify a result?

For those w/ #LONGCOVID, have VAGAL NERVE STIMULATORS helped your symptoms?

Ex: MedFit, Dolphin, Sensate

#MECFS #fibromyalgia #Lyme #MOLD: see SEPARATE polls below
For those with #MECFS, how have VAGAL NERVE STIMULATORS (examples: dolphin, MedFit, Sensate) helped your symptoms?

For #Lyme #Mold & #fibromyalgia, please see next two tweets.
For those with #LymeDisease or #mold exposure, how have VAGAL NERVE STIMULATORS (ex: Dolphin, MedFit, Sensate) helped your symptoms?

For #Fibromyalgia, please answer poll in NEXT tweet.
Read 6 tweets
The thing that bugs me most (no pun intended) about #LymeDisease is that people accept the claim it’s “controversial” without question. If people were getting properly diagnosed there would be no controversy—so the question should be, who is preventing proper diagnosis??
Who is preventing proper diagnosis of #LymeDisease?

1. @CDCgov, in many ways, but mainly by insisting on test methods that they, themselves have said are inaccurate. They also control the serum repository, ensuring it skews toward the highly reactive arthritis subset.
Who is preventing proper diagnosis of #LymeDisease?

2. The same people who created the diagnostic standard, who also profit from the bad tests, who also control the narrative by claiming #Lyme diagnosis is “controversial.”
Read 13 tweets
#1. The Feds on the #TBDWG have controlled every recommendation & every sentence of the Report to Congress for 6 years. This #FAC was THE chance for #lyme truth to be disclosed after 40 YEARS but the Feds’ role was to keep the false controversy going. 2/
#TBDWG & other efforts that R actually controlled by the Feds like #lymeX (it IS #HHS,not a non-profit) recommend new #lyme efforts but it’s recommended all those efforts be controlled by the very agencies (& In Turn individuals) that reversed #lymeDisease facts & made test fail.
#lymeDisease medicine will NOT be allowed to progress until the corrupt & FALSE #lyme controversy is exposed. It was known in the 1980s & 90s that lyme was a serious & disabling illness that causes neurological, immune & neuroimmune illness & an antibody test=false negatives. 4/
Read 14 tweets
Joseph Burrascano, MD - Diagnostic Tools
#Lyme Clinical Presentation: nonspecific, viral-like symptoms that persist, & new ones appear. Then symptoms more focused on musculoskeletal, peripheral and central nervous systems, heart and skin. Muti-systemic & migratory. #ILADS2022 Image
2/Burrascano: Sorting out the co-infections #NotJustLyme #Bartonella #Babesia #Ehrlichia #Anaplasma #Mycoplasma #ILADS2022 ImageImageImageImage
3/Burrascano: Types of tests
SEROLOGIES are indirect, B-cell based tests:
B-cells create antibodies and serologies measure these antibodies #ILADS2022
Read 19 tweets
"The Lyme disease bacteria—Borrelia burgdorferi—is definitely one of the smartest bacteria on the planet.⁠ The spirochete is a spiral shaped organism. And because of its spiral shape, and the fact that it has many tales, called flagella... A pink squiggly bacteria (s...
...this organism knows how to move through the tissues. It can disseminate throughout the body and into your central nervous system.⁠
So we know what syphilis can do to the body—which is a spirochetal infection. And the problem is, Lyme is the great imitator, just like syphilis was.⁠

The most common misdiagnoses that I see in my practice are people who have been diagnosed with chronic fatigue syndrome...⁠
Read 9 tweets
#LymeDisease diagnostic tests were designed to detect cases of *late Lyme arthritis*, a condition associated with certain genetics and which usually manifests as a single arthritic knee. This is the visual CDC uses ⤵️
People who have the genetic makeup for susceptibility to *late #Lyme arthritis* tend to produce a strong antibody response to #LymeDisease infection, but it builds over time. That’s why CDC & IDSA say “don’t test in the first 3 weeks.”
According to CDC & IDSA, #LymeDisease is *defined* by this small subset of people who are able to test positive by serology (antibody tests).

It should be the other way around: Define the disease, then establish testing that accurately diagnoses >95% of cases meeting criteria.
Read 12 tweets
*FDA did not find #LYMErix increased arthritis.

They only reviewed arthritis complaints b/c the crooks running the trials had redefined #LymeDisease & rigged testing to only DX arthritis-susceptible cases.

Not gonna find dangerous AEs only looking for swollen knees.
Oct 2021 I told FDA investigators, in person, that current #LymeDisease #vaccine trials must be halted.

There is no valid diagnostic so there is no way to determine efficacy.

Plus, it’s not a vaccine.
Read 5 tweets
am starting to prepare the data from our #vaccineinjuries #PostVacSyndrome survey for analysis today

just having a look at the raw data output and this stands out. most participants report no health problem that affected their day-to-day living prior to the offending vaccine screenshot of a survey question: Before getting the COVID19 Screenshot of survey question asking: "After the COVID1
after the offending vax general health was reduced to being very poor

even those who had no indication something could go wrong, who led completely unrestricted lives, had their world turned upside down after vaccination
many already chronically ill folk seem to have on their mind that they might react badly (and there was a distinct lack of chronic illness patients in trials), and indeed it seems ME and long COVID patients have a high prevalence of severe reactions (maybe around 20 %).
Read 9 tweets
Here’s how #LymeDisease testing is rigged.

1. Allen #Steere discovered a genetic association between strong immune response & arthritis.

2. Only about 15% of people fit that profile

3. SmithKline needed to *not* diagnose #LymeDisease for their #LYMErix #vaccine trials

4. So they convinced the feds to rig the disease definition so a case of #Lyme = #LymeArthritis ONLY

5. This is why #LymeDisease diagnostics are like antibody bingo—rigged to ID only the highly reactive arthritis-prone cases which represent a small minority

6. #LYMErix looked super effective in phase III because the tests would never DX more than 15% of cases!

Read 8 tweets
There is a lot of confusion about what #LymeDisease tests under the #CDC #twotier standard are actually designed to diagnose. I’d like to elucidate for all but am feeling kinda lazy, lol. Let’s see here. 1/x
Some think #lymeDisease diagnostics are geared toward #earlylyme only, while some say #latelyme or #LymeArthritis. It’s more specific than that & there is a reliance on timing & interpretation of results to exclude as many cases as possible. 2/x
First of all, one must understand that #LymeDisease & diagnostic test outcomes vary based on people’s genetic makeup, among other factors. People with certain HLAs (studied in-depth by #AllenSteere) tend to have a stronger immune response. 3/x
Read 13 tweets
I have been stuck in bed and within one room for almost 15 years now. I have learned over time to let go ( as many of us have) in the most impossible and profound of ways. To watch life pass by, to observe…. #cfs #mecfs #pmwe #longcovid #lymedisease #lyme
the rest of the world move forward, while sitting from the sidelines, from behind the metaphorical glass window pane. Friends going to college, discovering themselves, starting careers, traveling, buying homes, getting married, having babies,
starting families.
All things that I have craved with my whole heart to also be able to do but the severity of my condition has simply not allowed it. Having severe M.E. and also late stage Lyme disease is a prison sentence for many, an unexplainable and ..
Read 10 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
Tickborne Disease Updates from Sue Visser, DrPH, MS Associate Directors for Policy and Extramural Program @CDCgov Division of Vector-borne Diseases Image
Visser pointing out that surveillance is comes from the states. ImageImage
Visser. Pointing out the challenges and opportunities for #LymeDisease surveillance. #LymeDiseaseAwarenessMonth ImageImage
Read 7 tweets
Dr. Monica Embers | Persistent Lyme Disease: Supportive Evidence and Potential Solutions. #LymeDiseaseAwarenessMonth
Embers "there are three potential causes of post-treatment #LymeDisease
Inflammatory response
Continuous infection
The standard treatment for #LymeDisease utilizes a bacteriostatic antibiotic which slows the growth of the bacteria and relies on the immune system to clear the infection.
Read 9 tweets
Dr. Eva Sapi discussing morphological forms (spirochete, L-form, biofilm) of Borrelia burgdorferi and a potential connection to breast cancer. #LymeDiseaseAwarenessMonth
Did you know in 2013, with the help of the #Lyme community, LymeDisease,org helped Dr. Eva Sapi purchase her first atomic force microscope she needed to continue her important work with Lyme biofilms. #LymeDiseaseAwarenessMonth @liv_lyme…
According to the American Cancer Society 15% of all cancers are caused by infectious agents.
Sapi's #LymeDisease & breast cancer research is yet to be published.
Read 4 tweets
Dr. Steven Harris discussing how to evaluate complex #LymeDisease cases.
Steven's father Nick Harris, who recently passed away, was the founder of @igenexlab and founding member @ilads_lyme… #LymeDiseaseAwarenessMonth
#LymeDisease makes all other diseases more complex (eg Lyme + Babesia is worse than Lyme alone) and other conditions make Lyme harder to treat (eg. Bartonella &/or MCAS) #LymeDiseaseAwarenessMonth
#LymeDisease treatment needs to take into consideration the length of time of the infection(s) and all forms pathogens & toxins, including mold.
Read 4 tweets
Dr. @khoney giving an update on the progress that has been made since 2015 and how @Lyme_X is promoting innovation in Lyme disease diagnostics and treatment.
We at LymeDisease,org and all of you who participated in our survey helped establish the number one research priority for Lyme disease: Better testing.…
The AAAS meeting, bringing patients and other stakeholders together resulted in the recommendation of the Tick-Borne Disease Working Group as part of the Cures Act. @khoney & @aucott_john were the co-chairs of the first TBDWG which led to the Kay Hagan Tick Act. #LymeDisease
Read 5 tweets
Next speaker
Albert Garcia-Romeu, PhD
Assistant Professor of Psychiatry and Behavioral Sciences @JHPsychedelics Johns Hopkins University School of Medicine
Albert Garcia-Romeu, PhD
Is working with psychedelics @JHPsychedelics
Albert Garcia-Romeu, PhD
The war on drugs has made it difficult to study these compounds. Although more recently there is more human research.
Read 10 tweets
TIL there's a segment of health and science reporters who apparently think long covid is a made up thing

probably news to somebody like @GenePark who is going through hell after a mild infection
@GenePark #lymedisease patients whose symptoms didn't fully resolve after 14 days of doxycycline (technically dubbed "post treatment lyme disease syndrome") went through the exact same cocksure bullshit from the peanut gallery, and I hope this ignorance isn't pervasive with long covid
the idea that an infection can damage the body in lasting and poorly understood ways should not be a controversial concept. and yet for a weird sect of cocksure peanut gallery observers, it somehow is
Read 5 tweets
#disease risks in the new #IPCCReport

Climate change and variability are facilitating the spread of:
- #chikungunya virus in North, Central and South America, Europe and Asia
- tickborne #encephalitis in Europe
- #RiftValleyFever in Africa
- #WestNile fever in south- eastern Europe, western Asia, the Canadian Prairies, and parts of the USA
- #LymeDisease vectors in North America and Europe
- #Malaria in East and Southern Africa
- dengue globally
#Dengue risk will increase with longer seasons and wider geographic distribution in Asia, Europe, Central and South America and sub-Saharan Africa, potentially putting additional billions of people at risk by the end of the century
Read 5 tweets
1/🧵For months I’ve been grappling with what seemed like a real gap in conversations about #LongCOVID.

Here in @STATnews, I introduce you to 30 references & 3 #COVID survivors – Ray, Pam, and Carolyn – who taught me a lot. I hope you think so, too…
2/ "I feel like I'm getting the silent treatment & it's killing me," #LongCOVID pt Pamela Bishop confided in me about her months-long interactions as she tried to get answers about a strange array of symptoms that have plagued her since recovering from #Covid19.

Pam then & now…
3/ Up to1 in 3 COVID survivors report experiencing #longCovid symptoms 3 to 6 months later. Their stories give me an extreme case of déjà vu because this is playing out similarly to the problem of long-term survivorship after non-COVID critical illness.
Read 26 tweets
Hello Twitter Friends,
Quick Poll: Did you go hiking or nature walks in the northeast or upper Midwest of the U.S. this summer? #nature #hiking #ph260720
If you answered yes, did you happen to meet my friend, Ticky? And did you know that ticks (specifically blacklegged ticks) are the main transmitters for Lyme Disease? #ticky #lymedisease #ph260720
Lyme Disease is caused primarily by the bacteria Borrelia burgdorferi. Lyme disease can be very unpredictable in the symptoms it can cause. Typical symptoms include fever, headache, fatigue, and a skin rash that can look like a bulls eye or “target” rash. #lymedisease #ph260720
Read 10 tweets
From the Morten Group at Oxford:

"Our ME/CFS Raman diagnostic paper is just back from review. They like it! But we need to run a further set of expts with new blood samples. Really important we get the PhD funded in order to collect new bloods."
"In this proposal we will explore this association in detail in ME/CFS, Chronic Lyme and Long Covid examining not only the gut but also the currently unexplored blood biome."
"We propose that the blood biome and its association with a leaky gut could be a pivotal factor in a number of chronic conditions including #ME/cfs, #LymeDisease and #Long covid."
Read 8 tweets

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