Forum: Good news & bad at Saturday’s Lyme Disease forum

By David Cederstrom, Chronicle Staff Writer

Nearly 400 people attended last Saturday’s Lyme disease forum at SUNY Adirondack in Queensbury. They heard elected officials and experts in the field provide both good news and bad news about Lyme disease and other tickborne pathogens.

“Tickborne diseases are wreaking havoc on people’s lives,” with more than 300,000 new cases of Lyme disease each year, and “a significant percentage [who] fail to fully recover,” said Congresswoman Elise Stefanik, who sponsored the forum.

The bad news:

• It’s not just Lyme disease. Principal speaker Dr. Richard Horowitz said that tickborne diseases such as babesiosis (a malaria-like parasite) are becoming more common in New York and can occur in combination with Lyme.

  Dr. Horowitz, who authored the book Why Can’t I Get Better, about chronic Lyme, asked how many people in the audience experience fever, chills and night sweats. When about 20 people raised a hand, he said they likely have babesiosis.

• Speakers said the existence of chronic Lyme disease remains controversial. They contend there is clearly scientific evidence to show that it’s real, but that the medical establishment still resists changes to the Lyme treatment guidelines. The audience applauded calls for guideline changes and better medical insurance coverage.

  “There’s nobody in the audience that’s crazy” for believing they have chronic Lyme disease, said Dr. Garth Ehrlich, professor of microbiology and immunology at the Drexel University College of Medicine.

  “Bacteria have found ways to hide” from antibiotics, Dr. Ehrlich said.

  But Dr. Timothy Sellati of the Trudeau Institute in Saranac Lake said, “It’s still somewhat controversial” whether Lyme bacteria can do this.

  Dr. Ehrlich said bacteria can also form “biofilms,” organized concentrations that are much more resistant to antibiotics than individual bacteria on their own, suggesting that this could explain long-term persistence of Lyme.
• Lyme disease, the bacteria commonly identified as Borrelia burgdorferi, actually comes in a number of different species, most of which are not detected by standard lab tests, Dr. Horowitz said.
• Standard blood tests miss 50% of Lyme cases, said SUNY Adirondack microbiologist Holly Ahern.

The good news:

• Dr. Sellati said the Trudeau Institute wants to “establish a research center of excellence for Lyme disease” to foster field studies on ticks and small mammals, research on how ticks become infected and how that process can be interrupted, and more.
• Dr. Sellati said the Trudeau Institute’s sampling shows lower tick populations in the Adirondacks than other parts of the state, although he said the numbers are increasing. He said 28% of ticks recovered in the Adirondack Park were infected with Lyme disease, compared to 41% outside the park.

  However, Dr. Sellati continued, only 7% of the Lyme bacteria from outside the park contained a factor making it more infectious in humans, while 43% inside the park had the factor.

• Dr. Sellati said research is being done on “self-assembling antimicrobial peptide nanofibers,” very tiny, needle-like structures that can puncture and kill bacteria, but that pass through cells in the body without damaging them. Ways to activate immune system cells that kill Lyme bacteria is also being researched, he said.
• Dr. Horowitz said new Lyme disease tests include a test for “cytokine signature,” an inflammation indicator specific to Lyme disease. There’s also a questionnaire on symptoms which is fairly accurate at identifying Lyme disease, he said.
• Rep. Stefanik said HR 789, written by Congressman Chris Gibson, has been approved by the House of Representatives. She’s a co-sponsor. The bill directs the Department of Health and Human Services to take several steps to help combat Lyme disease, including fostering communication among researchers, providing more funding to the National Institutes of Health, and reducing red tape in the FDA drug approval process, she said.

Rep. Gibson, who also spoke, said the legislation would provide $9-billion in new money to the NIH to study infectious diseases, including Lyme.

He called the bill “constituent-driven legislation,” like the New York State law passed last year that protects doctors doing Lyme disease treatment outside the standard guidelines.

State Sen. Betty Little urged people to contact Sen. Schumer and Sen. Gillibrand in support of the Senate version of the bill.

State Assemblyman Dan Stec said that putting “heat to the feet” of legislators “is how things get done” in Albany and in Washington, D.C.

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