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Author Recounts Battle With Lyme, Autoimmune Disease

Holly Chameli has documented her journey with Lyme disease, chronic fatigue syndrome and autoimmune disease.

Growing up in areas like Frewsburg and Mayville, Holly Chameli always enjoyed getting the most out of warm-weather months.

She would often spend time running with her dogs near Chautauqua Lake, until a chance encounter with a tick in 2003 changed everything.

Despite being small enough to sit on the head of a ballpoint pen, that tick would eventually turn Chameli from an active young woman into a person suffering from multiple undiagnosed ailments.

The complete journey, which took more than a decade from start to finish, is catalogued in her 2019 book “The Healer Within: My Recovery from Chronic Lyme, CFS, and Autoimmune Disease.”

It is a story that few can imagine going through.

“I got exposed to it in Mayville after I’d recently graduated law school,” Chameli said. “I didn’t see the tick but the next morning I woke up with a concentric bullseye rash on my bicep. I didn’t have any symptoms right away. I was fairly young at the time and maybe you don’t take things as seriously as you should. The rash had started to fade a little bit and my doctor said ‘Don’t worry about it’. I didn’t get any bloodwork or tests.”

For a while, it seemed liked that doctor may have had the right idea. Chameli continued her active lifestyle for years without any serious ailments — that was until 2011.

“I left his office and just went on with my life,” Chameli said. “Little things just kind of kept going wrong but I was so active and healthy otherwise, so it never occurred to me that the tick bite was an issue. Flash-forward to 2011 and I started to have weird things that would happen. Dizzy spells, joint aches. In January of 2012 I woke up and it had exploded in me overnight. I woke up with extreme pain in every joint in my body, fatigue, bloodshot eyes.”

Being so far removed from a simple bug bite years ago, Chameli and her doctor were generally not looking for causes like Lyme disease.

Just to be on the safe side, they did the test all the same.

“When I first got super sick in 2012 I asked a doctor to test me for Lyme and it came back negative,” she said. “I started going from doctor to doctor. There was nothing that would give anyone a diagnoses.”

Eventually Chameli would get another test for Lyme disease, this time it came back positive. But before coming to the conclusion that her symptoms were actually caused by a tick bite, doctors were looking in all different directions for a prognosis.

“I was told in between that (testing) time that I had CFS (chronic fatigue syndrome) and fibromyalgia. There are a lot of people who get those diagnoses and just walk away. The testing just looks for the antibodies, not for the infection.”

In the end, Chameli was forced to find her own path out of the woods. Lyme disease is often treated with antibiotics, but different patients find success with other approaches.

For her, the solution was to focus on nutrition.

“No. 1, I had to get very focused and almost took a scientific approach to what I ate. I eliminated grains and added in fermented foods,” Chameli said. “I was very structured about it. I added in all sorts of different herbal protocols.”

One of the biggest challenges when finding relief from tick-born illnesses is that the parasites often carry a gamut of different pathogens. Lyme disease causes serious problems like inflammation and neurological issues, but ticks are also a breeding ground for other ailments like anaplasmosis.

“We don’t really understand a lot of these chronic illnesses. If I had just stopped when the doctor told me I had fibromyalgia I might have died,” Chameli said.

Like so many others who enjoy spending time in the outdoors, Chameli did not know much about the dangers of ticks before her own harrowing encounter. Now she is a dedicated advocate of finding your own path to healing and wellness.

“I enjoyed the process of writing this book, and it felt almost like therapy,” she said. “What was the whole point of going through this experience if not to help someone else who is lost and in the dark?”

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