VIKTIGA NYHETER FRÅN AMERIKANSKA SENATEN I NEW YORK STATE
Jag kopierar inlägget som publicerades på LDO’s hemsida precis: (ni får översätta via google https://translate.google.com/ om ni inte förstår engelska
On August 29, the New York State Senate’s Task Force on Lyme and Tick-borne Diseases held a public hearing, with participation from many stakeholders. Public health officials, scientists, patients, and doctors from IDSA and ILADS all addressed the committee hearing, which was streamed live to a national audience.
Senator Sue Serino, who chairs the Tick-borne Disease (TBD) Task Force, along with Senator Kemp Hannon, who chairs the Senate Standing Committee on Health, did a fantastic job of moderating the hearing. Senator Serino described how her own child suffers debilitating symptoms after being bitten by a tick and her personal desire to improve care for Lyme patients.
Dr. Steven Bock, a Hudson Valley physician who is Secretary of the ILADS Board of Directors, did a fantastic job of explaining the two-tier test for Lyme and why it misses about half of all Lyme disease cases. He also shared the story of his 9-year-old daughter. She was hospitalized with neurological damage, including loss of vision due to multiple TBDs, and subsequently recovered after 10 weeks of IV antibiotics.
Several patients including Jill Auerbach, Martin Wilson and Audrey Mitchel shared their heart-breaking stories about the painfully devastating, long-term effects of Lyme disease. In each case, a misdiagnosis prevented them from receiving early treatment.
Matthew Frye, PhD, from Cornell University, and Richard Ostfield, PhD, from The Cary Institute, presented solid information regarding the spread of ticks and new strategies for combating TBDs. The senators seemed impressed with their presentations and asked for further information regarding the ongoing pilot study on reducing ticks in neighborhoods.
Two physicians from Stony Brook University, Drs. Marcos and Donelan, said they are seeing rising numbers of Lyme, babesiosis, ehrlichiosis and anaplasmosis cases. Dr. Donelan stated that the patients she sees who are co-infected with Lyme and Babesia, or Lyme and a rickettsial illness, are “the sickest of the sick,” with many children and adults requiring hospitalization.
Dr. Robert Bransfield told the senators that many patients are referred for psychiatric consultation because of missed diagnosis for Lyme disease. He shared information from his recent study that demonstrated high numbers of suicides related to Lyme and TBDs, and called for better diagnostic tests. He commented that he thinks all Lyme testing should come with the warning that a negative test doesn’t rule out the disease.
The highlight of the hearing for me was when Holly Ahern, an associate professor of microbiology at SUNY Adirondack, took the stand. After Ahern told about her daughter’s missed diagnosis of Lyme, she delivered many hard-hitting facts: why the widely touted “single dose of doxycycline” is not effective treatment for Lyme disease, why the actual number of Lyme cases is at least 10 times greater than the CDC reports, why the CDC’s two-tier test is faulty, and why New York should invest more in tick-borne disease prevention and physician education.
It was a long hearing (almost five hours!) but well worth watching. It was well-organized and full of good information, which will help educate lawmakers. Because New York is one of the most populous state in the US, with one of the highest rates of Lyme and TBDs, it can have a huge impact in setting policy. If New York raises its standards, maybe other states will follow.
Click below to see for yourself.
LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @ Email her at: email@example.com .
Kampen för att Kenneth Sandström, ADAMS doktor – ska få tillbaka sin legitimation fortsätter. Namninsamlingen på nätet är uppe i 6 727 själar. Pengar strömmar in till alla föreningar som hjälper till. Hjälpa till? skriv under eller Swisha till 0734036515
The fight for Kenneth Sandström, Adams doctor – that he will get his license back continues. The online petition has reached 6 727 souls. The money keeps pouring in to all the associations that are helping with the collections. Wanna help? Sign or donate by SWISH to 0734036515
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Angelica Johansson, Grundare & Ordförande VIDAS, grundande delegat för Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes, grundande delegat för Global Response to Borreliosis and Coinfections Consortium or Global RBCC™, Delegate of Global Network On Institutionalized Discrimination, Medlem och administratör för GLiIO (Global Lyme & Invisible Illness Organisation), administratör för Bota Borrelia-bloggen, grundare & huvudadministratör för BOTA BORRELIA NU-gruppen på Facebook, F.d. Ordförande för Borrelia & TBE föreningen Sverige. Lyme advocate & citizen researcher
Angelica Johansson, Founder & President VIDAS, Founding Member of the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes, and Global Response to Borreliosis and Coinfections Consortium Global RBCC™, Delegate of Global Network On Institutionalized Discrimination, administrator for the ”Cure lyme blog”, Member and administrator GliIO (Global Lyme & Invisible Illness Organisation), Founder and main administrator for the ”Cure Lyme Now” Facebook group, Former President for The Swedish Lyme Association, Lyme advocate & citizen researcher
(I am writing this blog as a private citizien and NOT in my capacity as President and the views represented are my own and does not reflect the VIDAS or SLA’s stance and in the event of critisism, it should be directed to yours truly)