Our Work

 

Unfortunately, this syndrome is both serious and debilitating.  I was introduced to Lyme disease by a classmate and friend (Dr. Ginger Savely...yup, there are 2 of us!) while doing virology research for my Doctorate at Case Western. At that time,  I naively thought Ginger's work, while interesting, had nothing to do with Alaska.  The CDC had only two reportable cases of "Lyme disease" in the state of Alaska, and there were no hard bodied black legged ticks up here. 

 

I was in for an awakening...and an uphill battle!  With my focus on viral cluster re-activation and epidemiology, colleagues increasingly began asking me about their patients with medically complex multi-system illnesses.

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The focus of my research and interest changed. It did not take long to see the flaws in the CDC diagnostic criteria, and the lack of  testing available through commercial labs. I was seeing more chronically ill "medical mystery" patients. 

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My friend, Mia, worked with me and I somehow convinced an old friend of mine and the best nurse on the planet, Kamille, to help.  Two years later, Mia's family left Alaska. Three days after Mia left, I met Gen (we were both gymnastics moms). By sheer luck, she was moving here from California and I convince her to join us.

 

Gen wasn't only one third of our team. She refers to herself as Manuka's "original" (first diagnosed to the species level by polymerase chain reaction and in-situ hybridization testing)  Bartonella h. patient. With the CDC saying chronic Lyme and co-infection syndromes don't exist, my research and experiences were showing the opposite. The three of us took on the world of chronic Lyme in Alaska.  

 

As I learning this was more of a political and financial issue, I was also seeing how lucky we are to have some of the smartest most caring medical folks up here.  I may have dragged some of them kicking and screaming along with me, but now they are my "team".  A mentor and pathologist who taught me how to read bands on a western blot and how to get the most information possible out of tests that were neither specific nor sensitive.  A radiologist who taught me how to look beyond the obvious to see connections.  An anesthesiologist taught me that finding a clue that doesn't fit is still a clue. A neurologist showed me that there is no test  more important than really listening to a person. Not least of all is a good friend and naturopathic doctor who brings a whole different body of knowledge to the table. 

 

Even though Kamille left us for warmer weather (fortunately, she hasn't changed her cell number!!)  it takes the team to help people with this chronic tick-borne pathogen soup syndrome.