Discover and read the best of Twitter Threads about #livlymesummit

@liv_lyme

Jyotsna Shah, PhD, CCLD, MBA @IgenexI | High prevalence of tick-borne co-infections: Why it is important to include testing for Lyme and co-infections in patients w/ Lyme-like symptoms, and why a panel approach is necessary. @liv_lyme #LivLymeSummit

@liv_lyme

@IgenexI @liv_lyme Shah | 1° finding Babesia as co-infection, TBRF, then Bartonella. However not finding Bartonella in ticks. Lyme disease is most prevalent tick-borne infection. #LivLymeSummit

Shah | Borrelia species all over the world, not just East Coast B31. People travel. “You want a test that detects infection!” Patients don’t care which strain, simply want a diagnosis & proper treatment. #LivLymeSummit

@Stanford

Kristen Honey, PhD, PMP @Stanford @HHSCTO | Lyme Innovation: Every Included. “we need to listen to patients” “we need to tip the odds in our favor.” #LivLymeSummit @liv_lyme

@Stanford

@Stanford @HHSCTO @liv_lyme Honey @khoney | when you account for medical care, lost wages... estimates are in the 10’s of billions of dollars for the costs to society of Lyme disease. #LivLymeSummit

Honey | telling her personal story of Lyme: “I was recruited by a tick in 1999.” “Lyme disease is extremely isolating.” #LivLymeSummit

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@StanfordMed

Jayakumar Rajadas, PhD @StanfordMed | use of Disulfiram for the treatment of unresolved Lyme infections and associated detrimental host immune response. A silver bullet? #LivLymeSummit @liv_lyme

@StanfordMed

@StanfordMed @liv_lyme Rajadas | Identification of new drug candidates against Borrelia burgdorferi using high-throughput screening. #LivLymeSummit ncbi.nlm.nih.gov/pmc/articles/P…

@liv_lyme

Rajadas | giving a nice thank you to his collaborators. Funding by @liv_lyme & @BayAreaLyme Zhang @JohnsHopkinsSPH Embers @Tulane, Kenneth Liegner, MD & others. #LivLymeSummit

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@adribaran

Adrian Baranchuk, MD, FCCS @adribaran @QueensUCanada @QueensUGME | Lyme Carditis: Manifestations of Lyme disease in the electrical system. #LivLymeSummit @liv_lyme

@adribaran

@adribaran @QueensUCanada @QueensUGME @liv_lyme Baranchuk | The only way we're going to make progress is if we all work together. We need better education and more awareness. #LivLymeSummit

@adribaran

@adribaran @QueensUCanada @QueensUGME @liv_lyme Baranchuk | There are varying degrees of heart block. Some patients may have vague symptoms: fainting, shortness of breath, chest pain. Myopericarditis is global inflammation of the heart, like @drneilspector may require heart transplant. #LivLymeSummit

@liv_lyme

Lawrence Afrin, MD | Mast cell activation disease foundations and applications in tick-borne disease management. #LivLymeSummit @liv_lyme

@liv_lyme

@liv_lyme Afrin | mast cell activation syndrome (MCAS) is different than mastocytocis. While some MCAS have a KIT mutation, "It is the activation of the mast cells, not abnormal growth, that is contributing to the excess symptoms in MCAS." #LivLymeSummit

@liv_lyme

@liv_lyme Afrin | Characterization of Mast Cell Activation Syndrome. #MCAS #LivLymeSummit ncbi.nlm.nih.gov/pmc/articles/P…

@ColumbiaMed

Armin Alaedini, PhD @ColumbiaMed | Inflammatory mechanisms and biomarkers in the chronic manifestations of Lyme disease. #LivLymeSummit @liv_lyme

@ColumbiaMed

@ColumbiaMed @liv_lyme Alaedini | primary focus is on mechanisms for PTLDS (patients who continue to have symptoms after antibiotics) not focused on antibiotic refractory Lyme arthritis. #LivLymeSummit

@ColumbiaMed

@ColumbiaMed @liv_lyme Alaedini | There are huge financial and physical implications for patients with persisting symptoms of Lyme. "This is a real condition!"

The burden of Lyme borreliosis expressed in disability-adjusted life years. #LivLymeSummit academic.oup.com/eurpub/article…

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@CDCgov

Susanna Visser, Dr.PH, MS @CDCgov @CDC_NCEZID primary focus now is to increase Congress awareness of the severity of Lyme and tick-borne diseases. “Urgent Crisis!” #LivLymeSummit @liv_lyme

@CDCgov

@CDCgov @CDC_NCEZID @liv_lyme Visser | 2017 was a record year for Lyme and TBD's. Lyme is underreported. 42,743 cases reported but actual number are 10 x higher = 427,430 cases of Lyme. We can verify by looking at ICD codes on insurance claims. #LivLymeSummit

@CDCgov

@CDCgov @CDC_NCEZID @liv_lyme Visser | This is the first year that congress is funding tick surveillance at the CDC, hopes to expand this program. Because we have no vaccines and no method to control ticks, prevention is key. #LivLymeSummit.

@UNewHaven

Eva Sapi, PhD @UNewHaven | talking about different forms of Borrelia. “Borrelia plays hide & seek” “standard ABx don’t kill aggregate forms of Borrelia” #LivLymeSummit @liv_lyme

@UNewHaven

@UNewHaven @liv_lyme Sapi | Common bacteria form biofilm. The role of the biofilm is to protect the bacteria. It's like a city. Inside biofilm there are persister cells, sleeper cells, intercellular communication & immigration when the colony gets too large. #LivLymeSummit

Sapi | atomic force microscope shows Borrelia forms biofilm. You can see spirochete inside. #LivLymeSummit

@MedicineUVA

Thomas Plattis -Mills, MD, PhD, FRS @MedicineUVA | talking about alpha-gal syndrome & Lone Star ticks #LivLymeSummit @liv_lyme

@MedicineUVA

@MedicineUVA @liv_lyme Plattis-Mills | presentation of #AlphaGal allergy (onset 2-6 hours after exposure) different than severe anaphylaxis. Amblyoma americanum Lone star tick responsible in US, In France & Australia Ixodes is responsible for alpha-gal. New invasive Asian tick can also transmit.

Plattis-Mills | IgE to alpha-gal is a reaction to oligosaccharides. Question: “Is it due to tick saliva or something found in the tick?” #LivLymeSummit

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@liv_lyme

Dr Elena Frid talking about autoimmune encephalitis #Lyme disease. Neuroborreliosis Neuro-Lyme. #LivLymeSummit @liv_lyme

@liv_lyme

@liv_lyme Frid | Neuro Lyme is very difficult to diagnose as lumbar puncture is often false-negative. Lyme is a great imitator. Patients are often misdiagnosed with psychiatric illness. Children often misdiagnosed with ADD/ADHD, Autism, OCD, learning disabilities. #LivLymeSummit

@liv_lyme

@liv_lyme Frid | Lyme complicated by prevalence of co-infections per @Lymenews (32% babesia, 28% bartonella, 15% ehrlichia, 15% mycoplasma...) She is seeing much higher rate of co-infection in her practice. #LivLymeSummit About Lyme Disease Co-Infections lymedisease.org/lyme-basics/co…

@JohnsHopkinsSPH

Ying Zhang, MD @JohnsHopkinsSPH talking about different types of treatment that are effective for treatment of persistent Lyme in mouse models & other persistent infections. #LivLymeSummit @liv_lyme

@JohnsHopkinsSPH

@JohnsHopkinsSPH @liv_lyme Zhang | current IDSA treatment 2-4 weeks of Abx leaves 10-20% (4-36%) of patients with persistent symptoms. "feeling is that a majority is due to persistent infection" In these patients PTLDS = "partially treated Lyme disease syndrome" #LivLymeSummit

@JohnsHopkinsSPH

@JohnsHopkinsSPH @liv_lyme Zhang | what we've shown in chronic TB infection is we need a combination of drugs to kill the bacteria. "If we treat to short of time we get a high relapse rate." By adding persister drug (PZA) are able to reduce treatment time. #LivLymeSummit

@JohnsHopkinsSPH

John Aucott, MD @JohnsHopkinsSPH presenting his brain imaging study. #LivLymeSummit @liv_lyme

@JohnsHopkinsSPH

@JohnsHopkinsSPH @liv_lyme Aucott | "Lyme disease is a disease of many stages" "without treatment it can progress to chronic infection"
"Lyme disease loves to go to the nervous system" Encephalopathy common in untreated patients, can also happen when under-treated.
#LivLymeSummit

@JohnsHopkinsSPH

@JohnsHopkinsSPH @liv_lyme Aucott | tackling the controversy of "chronic Lyme disease" is divided into categories:
Lyme, non-Lyme (other), post-treatment Lyme, CFS/Fibro, late Lyme arthritis & late Lyme encephalopathy. (Note: PTLDS is a research definition that describes a very specific set of patients)