Lyme disease is sort of misunderstood and mysterious disease. How do you hope to change people's perception through the book and the presentations?
Makris: When they first identified the Lyme epidemic in the 1970s, at the time they thought it was a short-term infectious illness (that always presented with a bullseye rash). They thought it only had a couple of weeks duration and two weeks of antibiotics should take care of it. But years have gone by now and decades later, what they're finding out is only half the people or less get the bullseye rash. I never had it.
A lot of people feel like they are coming down with the flu or have stiff joints but don't have the rash, so they go to their physician and they don't even think to test for Lyme disease, so there's 50 percent of the cases right there flying under radar.
And the second piece is we now know that two weeks is insufficient, that people need six weeks (of medication) right up front. What happened is some people that even got antibiotics didn't get enough, and then what happens is six months, two years, three years later and you've got these weird symptoms, and the doctor says we gave the antibiotics so this is not Lyme disease, this is something else? So a lot of people get diagnosed with other things, like lupus, or MS or chronic fatigue syndrome, when really it could all be l inked back into the bacteria of Lyme disease. But they have not labeled the chronic version of the illness, so many doctors don't know what they're looking at. Some of them are driving in the dark.
Laura: I want people to realize that it can be chronic, and the wait-and-see approach I received when I went to doctor can be very dangerous, especially in this state, where with state testing, when ticks are tested they turn up to be positive for Lyme disease and other tick borne illness at least 50 percent of the time. That's pretty dramatic. I was talking to pest control professional in Milford and he said there was a certain spot in Bedford that was upward of 90 percent when testing ticks. With those odds, the wait-and-see approach seems kind of dangerous.
What was the lowest point in your journey? How about the highest point?
Katina: Rock bottom was the summer of 2005, when I was five years into it, when I was too weak to even get dressed or get a shower without help. I was really fractured physically and emotionally and really thought I was dying. I had all these strange palsies and neuropathies, speech impediments and dementia-type symptoms where I couldn't think of names and places. It was really frightening, and my spirit was really broken.
And when I really knew I was out of it and back to my whole self again was probably just last summer, in 2011, when I could swim outdoors in the pond, swim a mile every day without it being a problem. I just though, wow, I can swim a mile every day in open water. That was definitely a crowning moment, something very special. I was kind of working on it for two summers, starting with just a little distance to the buoy and back, so I kind of worked on it over a two-year period, and last summer I had a string of days about 10 in a row where I swam a mile every day on my own, in open water, and said, this is really pretty and amazing for me.
Why do you think Lyme disease is so difficult to diagnose? What are some of the concerns given that situation?
Katina: The two most important things for me is No. 1, proper diagnosis, which means you have to use state of the are Lyme testing labs. There are only three of them in the country, and the average physician doesn't necessarily know about them. And No. 2 is integrating the two hands of health care, which is pharmaceutical to deal with infection and the support of natural medicine to make it through the long haul and actually make it to a complete recovery, that you don't just get halfway well, you get all the way well. Those are my two hopes with the book, to help people get the proper diagnosis, and then also support so you can really reclaim your life. (next page »)