I send out bi-weekly tips for living well with a chronic illness to people who sign up for my free report, and for one of my October tips I wrote about a former client who had chronic fatigue syndrome. A woman wrote back to ask me to let my former client know about the book Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub. I did that and I also got the book myself, and have just finished reading it.
In the book, the author recounts her family’s harrowing ordeal with Lyme disease that began after their 1993 move from New York City to a nice house next to the woods about 50 miles away.
I highly recommend this book, especially if you have or know someone who has Lyme disease, chronic fatigue syndrome, fibromyalgia, lupus, Parkinson’s disease, or amyotrophic lateral sclerosis (Lou Gehrig’s disease). The author makes a very convincing case that Lyme and other tick-born diseases are often misdiagnosed as one of those other illnesses.
The following excerpt was especially eye-opening for me: “Even the campus green at Brown University, surrounded by city streets near downtown Providence, had Lyme ticks: One friend sitting on the green had pulled a tick from her leg only to find, a short time later, an erythema migrans* in that very spot. She later tested positive for Lyme disease.”
I have a friend who was diagnosed with lupus not long after she attended Brown about 25 years ago, so I couldn’t help but wonder when I read those two sentences if my friend’s lupus and other health problems are actually due to Lyme disease. I sent my friend an email with a brief summary of the book. If she decides to be tested for Lyme, I will write about her diagnosis, treatments, and results in future posts.
As the author describes the devastating symptoms, the progress, and the setbacks she, her husband, and their two sons experienced from Lyme and other tick-born illnesses, she makes it strikingly clear how serious and complex these diseases are. But what made the ordeal many times worse for them and countless others was the turf wars that continue to rage within the medical community. They pitted doctor against doctor and doctors against government agencies, and resulted in some doctors whom patients felt were the only ones treating their illness effectively either stopping treating Lyme patients or risking losing their medical licenses.
The author was able to cure her Lyme disease, and her husband eventually recovered and stayed relatively well as long as he continued to take his medication. At the time Weintraub completed the book, one of her sons had recovered, been re-infected, and had recovered again, and the other was finally regaining his health after being gravely ill. She had much more to say, but I don’t want to spoil the ending for you.
* Erythema migrans is the name given to the rash, frequently target like, that often appears after a person is bitten by an infected tick.