For 90 minutes, the standing room crowd of more than 200 watched the movie, “Under Our Skin.”
When it was over, Dr. Daniel Cameron, an epidemiologist from Westchester County, N.Y., complimented the film for not only following the plight of a few Lyme Disease sufferers but also for looking at the handful of doctors engaged in aggressively treating it and also getting a reality check from the medical community that was/is at odds with their perspective.
“Very seldom are you able to so well capture what the challenges are that we face,” Cameron said. “It’s nice to have a movie that sets the stage.”
“Besides giving you a glimpse of people suffering from Lyme disease trying to get better, you also see how three doctors are treated by their respective state’s medical boards,” Cameron said.
For 90 more minutes, Cameron took questions from the audience, but before they got started asked for a show of hands as to how many in the crowd had Lyme disease.
Nearly half raised their hands.
It was noted that more cases of Lyme disease are reported in Pennsylvania than any other state in the nation.
Lyme disease is a condition that masks itself as other illnesses, and many people don’t realize they may have it.
That’s the message that organizer Robin Lynn of Tunkhannock said she wanted to get across by hosting the program.
Lynn said she believes she has had Lyme disease for decades, but it has only been in the past 10 years that she has known for sure.
Lynn said having dealt with the symptoms of the disease for most of her life, she hopes the information will enable people to get treatment early.
“I want others to be able not to suffer what I went through,” she said.
According to the Lyme Disease Association, Lyme disease is a bacterial infection that is usually contracted through being bitten by a deer tick. The ticks that carry the disease are extremely small, and it is possible for one to bite someone without that person noticing it until much later.
In their earliest stages, the symptoms of Lyme disease mimic other diseases, with more than three dozen known symptoms, which can include fever, stiff neck, dizziness, vertigo, bad headaches and nausea.
Too often, Cameron said, doctors don’t look for Lyme disease, and end up treating people for more common and less serious conditions.
“Doctors are seeing the symptoms, but they are not looking beneath that presentation that Lyme disease could be behind the whole illness,” he said.
Therefore, instead of patients getting the treatment they need, Cameron said they are being medicated for conditions they don’t have.
Some common misdiagnoses Cameron mentioned are chronic fatigue syndrome or fibromyalgia in adults, and attention deficit disorder in children.
“It’s a shame when someone presents with Lyme disease and doesn’t get treated in time,” he said.
Left untreated, Lyme disease can develop from its original acute form into a chronic condition that gradually eats away at the body, Cameron said.
He noted, however, that he has encountered and the film very pointedly portrayed colleagues who don’t accept this view.
“There are doctors around who have taken the position that there is no such thing as a chronic form of Lyme disease,” he said.
One suggestion Cameron makes is that people should observe if treatments a doctor prescribes are working. If after a month the symptoms persist, he says patients should ask their doctors if Lyme disease could be playing a part.
And if a doctor won’t consider that option, Cameron said to get a second opinion.
The questions from the audience addressed issues of symptoms, tests, diet, vaccines and even if it was reckless for someone who has Lyme disease to subsequently get pregnant.
“That’s a tough one,” Cameron said, starting to explain a range of issues. He stopped himself to say that it’s almost the same issue a couple is wrestling when you consider breastfeeding a child.
“I can tell you I have seen many women with Lyme who have gone on to have babies which have grown up and live successfully,” Cameron said.
Although there was a table of literature at the program, the organizers also said some websites are also helpful.
Lynn oversees http://aroundtheworldwithlyme.org/ which addresses matters of interest to northeast Pennsylvania and beyond.
LymeActionPa.com keeps the public informed about public policy matters in Pennsylvania including legislation now before the General Assembly: House Bill 272 and Senate Bill 210.
LymeProject.com is Dr. Cameron’s website that explores many of the issues he discussed Saturday, and deals with every day.
Lyme disease facts
Lyme disease often brings a skin rash that has a bull’s-eye appearance, as well as fever, fatigue, headache, muscle aches and joint pain. Left untreated, symptoms can worsen. In later stages, Lyme disease can cause neurological and cardiac problems, intense joint pain and other serious sympto
To prevent Lyme disease and other tick-borne illnesses, avoid places where ticks like to hide, including woods, fields and areas with overgrown brush. Using insect repellent, wearing hats and light-colored clothing so ticks can be spotted easily and checking yourself, family members and pets after leaving areas where ticks might be can help reduce the risk of getting Lyme disease.
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