“So it was never treated so that’s when the journey began,” said Karen Novick. Trisha Martin added, “When you have an illness like this when you’re sick, you’re sick and there’s no getting around it. ” Two women, one common health crisis. Both claim they are living with Chronic Lyme Disease years after they were first infected.
53-year-old Karen Novick of Wilkes-Barre Township says one night in 2007 she woke up to the bite of a tick she encountered hours earlier while hiking on Larksville Mountain “Had no idea what could happen because I thought ‘oh the tick wasn’t on 24 hours. It wasn’t even on 12’ so I thought I’ll be good.” Every day afterwards her health spiraled downward for months. “Extreme fatigue and I could be breaking out in sweats and chills and, you know, just like sick.”
With no initial Lyme Disease diagnosis, she didn’t have the successful outcome of so many other Lyme patients aggressively treated with antibiotics within the first days of the infection. Karen once enjoyed hiking, biking and skydiving and had a good IT job. Living with chronic Lyme, she says, changed all that. “Loss is associated with it because no matter how much you want to be productive in society you know and do the things you planned on doing you just… you just can’t.” Karen takes a myriad of supplements to deal with her condition, eats healthier and tries to get what exercise she can.
For 60-year-old Trisha Martin of Saylorsburg, it was a second encounter with Lyme she claims she suffered in 1992 — about a quarter-century after her first infection — that robs her of her health to this day. “It was a strain my body had not yet encountered and had no defense against. All my systems crashed, I fought my way back and then in over the years I just lost that fight.”
She once had a thriving nursery and landscaping business. “Just eventually became disabled. Lost my business and my job.” Trisha grows a whole host of herbs, eats organic food and tries to stay as active as her condition allows. “You do your best to pull things off but you crash. When you crash, you’re in bed and when you’re good you make the most of life because that’s what you get.”
Besides living with the fallout of Lyme, both Trisha and Karen say they share something else in common. They both have to travel out of state to see a doctor who recognizes their illness as chronic Lyme. Trisha travels to Connecticut while Karen sees renowned Lyme expert and New York physician Dr. Richard Horowitz, MD.
Reached via Skype, Dr. Horowitz said, “This disease is not just a medical disease. It is a political disease.” He disputes the claims of the Infectious Diseases Society of America which does not recognize chronic Lyme and insists Lyme Disease is easily diagnosed. “The blood tests are not reliable in part because there are over 100 different strains of Lyme Disease in the United States.”
Dr. Horowitz cites instances in which medical boards have sanctioned American doctors for treating a diagnosis of Chronic Lyme — leaving, in his opinion, physicians and health care providers frightened to treat what he considers an epidemic. “These patients are extremely complicated and I think a lot of the health care providers truthfully don’t know what to do for these people.”
Dr. Horowitz says in cases like Karen you not only must treat Lyme, but also co-infections and compromised immune systems that often are a by-product of Lyme. “In Karen’s case, she had chronic immune variable deficiency. Her immune system was not working properly from the Lyme and she needed intravenous immunoglobulin therapy which helped her to stop having very severe reactions to the antibiotics and to help her with her neuropathy.”
Dr. Horowitz authored the best-selling book “Why Can’t I Get Better”. He says when it comes to chronic Lyme, the problem is misdiagnosis. “People can get these Lyme-like illnesses. It can persist in the body. There’s no doubt about it.”
Dr. Horowitz has a second book about chronic Lyme coming out later this year entitled “How Can I Get Better?”. He is also working on an app so that doctors can use his treatment model, work with insurance companies, and allow patients like Karen and Trisha to be treated closer to home.