In 2007, 27,444 cases of Lyme Disease were reported to the Center for Disease Control. That’s 3 people every hour, every day. And the CDC believes only 10-12 percent of Lyme Disease cases are actually being reported to them. The CDC now estimates 300,000 people per year are being infected with this illness. Many suffer with chronic symptoms for years before they discover the problem, if they discover the problem.
A young man, John Donnally, recently biked through West Virginia on his path across the country to bring attention to Lyme Disease and other tick borne illnesses. He hopes the campaign encourages more open discussion and inspires more research so that people with Lyme disease and other tick borne illnesses can have a better chance at restoring their health.
Who is John Donnally?
John Donnally is a 24-year-old Lyme sufferer and cyclist, who is riding 4000 miles on a cross-country bike tour.
“I came up with this idea in January. And it’s because I had a very bad case of Lyme disease growing up and like most people, didn’t know a lot about it until I got sick."
Donnally was eventually diagnosed. Then later, both his parents, his younger sister and his aunt were also diagnosed. He says once he was finally diagnosed he was treated with the conventional three-week heavy doses of antibiotics.
“I received a few weeks of intravenous antibiotics. So I received a pickline that went through my bicep and into my heart and I got a lot better."
But then he got sick again in college with new, bizarre symptoms like lock-jaw, tingling and numbness, ringing in his ears, neurological problems, degenerative arthritis, and a lot of other things that a 21 year old shouldn't have been experiencing.
So it was back to the races. It took another round of specialists scratching their heads, his symptoms continuing to progress, and more time before he was again diagnosed. Today Donnally says he’s at 85-90 percent, healthy enough to ride across the country, and he says he feels lucky. That’s why he approached an advocacy group, the Tick Born Disease Alliance in New York City, with the cycling project idea that was wrapped into a national campaign dubbed Bite Back for a Cure.
“This is an awareness-building campaign, it’s a fund raising campaign, but it’s also a listening and story-sharing ride. I’m meeting and speaking with patients as I make my way across the country. We’re doing filmed interviews and sharing all that stuff on YouTube and Facebook.”
Donnally is now headed toward Philadelphia. His ride started in late September in San Francisco, and hopes to end up in New York City by December 1. You can follow Donnally as he embarks on the last leg of his journey on Facebook, or on Twitter @JohnDonnally.
Much controversy surrounds Lyme Disease for a myriad of reasons. As a partial result, the disease remains draped in ambiguity and mystery, and precious little is discussed on the issue above a whisper. But Donnally is working to change that.
Controversy 1: The Test
Donnally explains that more effective diagnostic methods are needed.
“Patients may show up false negative for a while and after going misdiagnosed with other things they come back with a positive Lyme Disease diagnosis.”
Controversy 2 (3, 4, 5?): Treatment
Donnally says that there are basically two schools of thought that rule the day. One says about three weeks of heavy antibiotics will do the trick. That might be true, if caught early enough or if it just happens to work. But the Center for Disease Control reports that in at least 20 percent of the cases, symptoms return after a month’s treatment.
The second school of thought says in lieu of a cure, long-term, continuous courses of antibiotics are the only recourse many have. Of course, there are major problems with that course of action such as side effects, fears within the communities about over use of antibiotics, and of course payment.
Controversy 6: Payment
“For many patients, insurance will not cover treatment that exceeds one month of oral antibiotics. So for people who cannot afford long-term treatment or don’t have the resources to find other means of getting better? This is an issue of massive social injustice,” Donnally says.
Donnally says if you have the wherewithal you probably can get treatment, but it'll be out-of-pocket expenses. People spend hundreds of thousands of dollars just trying to get better.
"So not only does it take a toll on your health," Donnally says, "people go bankrupt trying to get treatment.”
Controversy 7 (8, 9, 10...): Co-infection
As if it weren’t already complicated enough, we aren’t just talking about a single nasty bacteria. Lyme is just the town on the map where one particular pervasive bacteria is infamous for infecting the majority of the people. The name of the particular bacteria is Borrelia burgdorferi. But other diseases are also transmitted by ticks. Those diseases are caused by infections from a variety of pathogens, including bacteria, viruses and protozoa. One tick bite may transmit Lyme disease as well as/or over a dozen additional tick-borne diseases.
“There are a few known co-infections, and there’s a dozen known pathogens that ticks can carry. If you were to see your regular physician and maybe he does know to test you for Lyme Disease, you may not get tested for all these other co-infections."
"Treating these diseases in their latent, complicated forms has kind of become an art form for doctors. There’s just not enough known about these other pathogens. And that’s why I’m doing this ride, to bring awareness to all tick borne diseases and to generate funding for new research,” Donnally said.
More research Donnally says, which might lead to more accurate diagnostics, better treatment, and a perhaps better insight into just why it is that these pathogens are so pervasive in growing areas of the country.