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Thursday, December 28, 2017

FIRST TIOGA COUNTY LYME DISEASE SUPPORT GROUP MEETING IS THURSDAY, JAN. 18

Photo by John EatonLuke Dunham (left) and Thomas Putnam prepare to distribute posters and information about the documentary "Under Our Skin," the untold story of Lyme disease. The film will be shown during the Tioga County Lyme Disease Support Group meeting on Thursday, Jan. 18 at 6:30 p.m. in Wellsboro.


Wellsboro area residents Luke Dunham and Thomas Putnam are leading the newly formed Tioga County Lyme Disease Support Group to help people in Tioga County and surrounding areas who think they may have a tick-borne illness as well as those who have been diagnosed and are seeking support and information.

Dunham and Putnam recently formed the support group under the auspices of the PA Lyme Resource Network. Both men are regional co-leaders with the network, a statewide organization that is a registered 501c3 nonprofit corporation.

The Tioga County Lyme Disease Support Group is meeting for the first time on Thursday, Jan. 18 from 6:30 to 8 p.m. at the Tokishi Training Center at 124 Nypum Drive in Wellsboro. To be shown at that meeting will be the documentary “Under Our Skin,” the untold story of Lyme disease. A question and answer session will follow, led by Linda Wales of Millerton, founder of A Hope for Lyme in Horseheads, New York. The meeting is free and open to the public.

"Looking back, I know I had symptoms starting in 2009,” said Dunham. Between 2012 and 2013, he did not feel well. “My worst symptoms started in 2014.”

Dunham was suffering from severe fatigue, migrating joint pain, heart palpitations, neurological problems, difficulty with short-term memory called "brain fog" and “air hunger,” the feeling that he was not getting enough oxygen.

The experiences of a colleague in the Tioga County Probation Department who had late-stage Lyme disease symptoms led Dunham to be tested. In 2013, he had the ELISA test, used to measure antibodies in the blood to identify certain infectious diseases, such as Lyme. It was negative. He had a positive Western blot test and was diagnosed on Sept. 11, 2014.

"This disease has impacted every part of my life, from physical to mental,” Dunham said. “Initially I was put on the antibiotic Doxycycline. After that failed, I was put on multiple classes of antibiotics." To get well, he has been undergoing treatment much longer than standard protocols.

"I'm probably 75 percent better than I was early on,” said Dunham. “I experience many of the same symptoms but to a much lesser degree and more sporadically. About six months ago, I stopped taking antibiotics and relapsed. Long-term antibiotics, supplements and diet are the main treatment options today.”

"It's a tricky disease,” said Putnam who is Hamilton-Gibson Productions artistic director. “The kind of test, the lab that analyzes it, the timing of the test, and the current unreliability of tests especially in being able to identify the multiple co-infections, all create a kind of crapshoot, at best.”

In March of 2017, Putnam was tested at two different hospitals. Both tests were negative. He then went to an infectious disease specialist, tested positive and was diagnosed in May of 2017.

"I had no reason to believe I had been bitten by a tick," said Putnam. "The symptoms hit me hard this past March. I had extreme lightheadedness and had to hang onto walls or crawl just to move from room to room.” His white blood cell count was low. He had roving joint pain, strange headaches “not really pain but pressure and heat,” a 103-degree temperature at times and “horrendous” fatigue so he was barely able to get up in the morning and needed to nap during the day. “Brain fog was the most alarming. I couldn't focus or concentrate or remember what I had just done,” Putnam said.

"I took Doxycycline." It was prescribed for only one month. Putnam's symptoms lessened considerably but all reappeared about a month after he stopped taking the drug. That’s when he began a more rigorous treatment plan. “I am still on it and am much better today,” he said.

Dunham was the first person Putnam spoke to about his symptoms. “It was quite by accident,” Putnam said. “We shared symptoms and I told him about my treatment,” said Dunham.

"Not long after that, we became interested in forming a Tioga County Lyme Disease Support Group because of our experiences, which are unfortunately common," Dunham said. "Lyme can be much more complex than an acute bacterial infection that can be diagnosed and easily cured. People can be infected by Lyme and one or more co-infections. Tick-borne disease would be a better name since there are many possible infections that can result from ticks and other vector-borne transmitters." Co-infections can be caused by multiple strains of Borelia or other organisms such as Bartonella, Ehrlichiosis, Babeiosis and Powassan Virus.

"Thinking of Lyme as a complex set of medical problems that can manifest in a variety of ways depending on the infectious organism and the response a person has to it is the new way of looking at this disease,” said Dunham.

"If caught early, there is a much higher treatment success rate. Unfortunately there is still controversy among scientists and researchers involving testing, diagnosis, definitions and treatment. Right now, peer-reviewed science is happening and I believe good news will come from it eventually," Dunham said.

"In the meantime, Thomas and I think it is important to have a place where we can offer some support and guidance to those who are suffering. While there may not always be clear answers, there will be people who are experiencing what we have. The best words someone in this situation can hear are ‘I believe you.'"

For more information about the first meeting and the support group, contact Dunham and Putnam by email at tiogacountylyme@palyme.org or by calling Putnam at 570-439-2000.

1 comment :

David R Thomas said...

Thank you MR. Luke Dunham and Mr. Thomas Putnam for your continued efforts in bringing this group about.