The battle to fight Lyme disease continues

Informational night set Tuesday at Guilderland Town Hall, NY

Bill Buell @buell_bill | April 8, 2018 0

web ticks2Holly Ahern, left, and Linda Reeves have both seen the effects of Lyme disease.  PHOTOGRAPHER: PHOTOS PROVIDED

When the Centers for Disease Control and Prevention web site informs its visitors that “most cases of Lyme disease can be treated successfully with a few weeks of antibiotics,” Holly Ahern must resist the urge to scream.

“It’s very complicated, and for the CDC to set up a bunch of guidelines from incomplete research done in the 1970s and ’80s is very frustrating,” said Ahern, a 1977 Scotia-Glenville High School graduate who has spent the last 20 years as a professor of microbiology at SUNY-Adirondack in Queensbury. “We need to change our approach to everything about Lyme disease, but there are an important group of individuals who are still in power that refuse to believe they were half wrong and will not yield the stage. We need more research. We need better testing.”

While she continues to emphasize the need for better “science” when it comes to Lyme disease, Ahern’s focus will switch to public awareness Tuesday at 7 p.m. with a presentation on Lyme disease and other tick-borne illnesses at the Guilderland Town Hall. The presentation is being offered by the Lyme Action Network, a not-for-profit group created by Ahern and Christina T. Fisk back in 2009. Both women had daughters they felt were negatively impacted by what they portray as the poor CDC standard of care available to Lyme patients.

“What we’re doing is teaching people about the disease, and trying to dispel some of the hard-core myths about it,” said Ahern. “The bullseye rash, that’s just one of them.  That doesn’t happen for most of the patients. It didn’t happen to my daughter.”

Ahern’s daughter Kayleigh, an All-American swimmer at Union College as a freshman, was bitten by a tick in 2009.

“Within two weeks of competing at the highest level, she came back from nationals and was bedridden,” remembered Ahern. “She didn’t get out of bed for two years. We were only able to get a correct diagnosis after my husband had been at an educational meeting about Lyme disease. We decided to have her tested again and this time she was positive. The tests are so poor. They’re wrong half of the time.”

While Ahern’s daughter struggled through a long recovery, Linda Reeves is still waiting for the time when she feels good again. Good enough to work in her garden or good enough to play tennis, two passions of her’s she’s enjoyed for 40 years.

“I go for short walks now to the end of my street and back,” said Reeves, who grew up in Burnt Hills and Ballston Spa and now lives in Guilderland. “That’s my big accomplishment for the day. It’s effected my neurological system, so I still have mobility issues. I have orthopedic and circulation problems. Along with playing tennis three or four times a week and gardening, I also was a long-distance walker. Suddenly, one day, I couldn’t do anything.”

Reeves began feeling ill in March of 2016, and says she wasn’t even diagnosed correctly until 15 months later.

“I went to countless doctors who laughed at me and told me I was wasting their time,” she said. “I would come home and read medical journal after medical journal to try to find out what was wrong with me, because it seemed as though the doctors weren’t really interested. And if you read people’s stories this is the kind of thing that happens all the time. There’s so much miss-information out there. The doctors don’t recognize the symptoms and they’re relying on faulty tests.”

It is Reeves, with the help of the town of Guilderland and state Senator George Amedore, R-Rotterdam, who is putting together Tuesday night’s informational get-together. Reeves is hopeful the public continues to become more informed, and that things will get better. She said a new book, “Lyme: The First Epidemic of Climate Change,” by Mary Beth Pfeiffer, was released just last week, and physicians such as Dr. Kenneth Liegner of Pawling and Dr. Daniel Cameron of Mt. Kisco continue their strenuous efforts to improve medical science’s response to the disease. Back in 2010, Liegner said the following:

“In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.

Both Liegner and Cameron have been engaged in the fight to educate doctors and the public about Lyme disease for more than 30 years.

“Doctors are still divided as to how best approach the complicated issues relating to Lyme disease,” Cameron said by phone last week. “Physicians are willing to accept patients for early treatment of the rash by prescribing 21 days of antibiotics, but they’re not so comfortable dealing with the long-term, chronic complications associated with Lyme disease. It is so complicated. There’s no damage to your organs so the physical exam looks good, and the testing for the bacteria is not very reliable. It can get very frustrating, but I encourage doctors to revisit the situation. I tell patients to find a doctor who will revisit the problem, and maybe send you to a specialist. Everyone involved has to have a better understanding of all the problems you come up against.”

Physicians like Liegner and Cameron are a godsend according to Ahern, but they’re too few and far between.

“People have to advocate for themselves when they’re dealing with their doctors,” she said. “People have to be informed and have conversations with their health care providers. I’m doing this so that maybe other mothers don’t have to go through the anguish that I did. Don’t be afraid to ask questions. Stand up to your doctor. This is a two-way street.”

Ahern wishes she knew back in 2010 what she knows now about Lyme disease.

“We were told if there’s no bullseye rash there’s no Lyme disease,” she said. “I didn’t know. I think about how if I had stood my ground back then maybe things would have turned out a lot better. I try not to dwell on that too much, but I would like to help other people avoid that kind of situation. About the only thing medical science agrees on is that the earlier you’re diagnosed, the easier it is to get better. That’s why we have to have better testing.”

There are efforts under way to improve the medical response to Lyme disease. In 2015, then Republican Congressman in the 19th District, Chris Gibson, spearheaded legislation that prioritized Lyme disease research, and at the state level just this past week state Senator James L. Seward, R-Oneonta, pushed through legislation that calls upon the state to investigate the impact Lyme and tick-borne diseases may have on mental health.

“We know more today than ever before about these debilitating ailments and are making strides in prevention and treatment,” Seward said in a statement to the press last week. “Studying Lyme in relation to mental health is a logical step forward that can lead to improved diagnosis and treatment plans that can improve patient outcomes in the short and long term.”

A tick-borne disease caused by the bacterium Borrelia burgdorferi, Lyme disease cases have increased dramatically since the CDC began monitoring the problem in the early 1990s. According to Vector Disease Control International, a group created in 1992 to help communities manage their mosquito population, the increase in Lyme disease can be attributed to a “northern expansion” of the ticks that carry the bacteria, and that the shift northward is “suspected to be associated with global climate change.”

Whatever the reason, Lyme disease – the name comes from a small town in Connecticut where a cluster of cases were recognized in 1977 – is here and it isn’t going anywhere right away. And, there’s something else people have to worry about.

“Insurance companies want nothing to do with you,” said Reeves. “I felt like I was really out there on my own financially and it’s the same with most other people. Parents have to take out loans to take care of their kids who get Lyme disease. It’s unconscionable to me. You have to worry about getting better physically and then you have to worry about getting better financially.

Town of Guilderland supervisor Peter G. Barber is hoping to see a good turnout Tuesday night.

“The town is pleased to co-sponsor this important presentation as we open the town’s open spaces this spring,” said Barber. “Professor Ahern’s presentation and Senator Amedore’s update will provide town residents with necessary information for their safe enjoyment of outdoor activities.”