Book Review- "Beating Lyme"
Topic: Book Reviews
“Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease” by Constance A. Bean, with Lesley Ann Fein, MD, MPH; Amacon; New York; 2008.

This is a must read book for anyone who has Lyme, has been treated for Lyme, suspects their chronic ailments may be caused by Lyme, or who knows or loves someone who has or may have Lyme Disease.  

“Beating Lyme” is a helpful introduction into the facts surrounding Lyme Disease, its history, its often devastating symptoms, it's potential co-infections, it's frequent under-diagnosis or misdiagnosis; and the petty, mean-spirited, destructive and often arbitrary politics involved with its “official” diagnosis and treatment protocols established through the ISDA, the Infectious Diseases Society of America.

If you've ever wondered, “Whatever happened to the Lyme vaccine?” the troubling answer to that question can be found within this book as well.
   
For me personally, “Beating Lyme” was the most important book I've read this year. I lack health insurance and live in a state where people with Lyme cannot get Disability or medical help from the state. I live with untreated chronic Lyme and have done so since the mid 90's despite the fact I had a positive Western Blot Lyme test in 1994, whose results I was repeatedly told to ignore by the physicians I had seen. It couldn't be Lyme. I was told to ignore the test result and my symptoms, and they would all go away.  

My initial Lyme symptoms, which included Lyme Disease caused Mitral Valve Prolapse, and assorted other cardiac problems (suspected pericarditis, extremely rapid heart rates, abnormally slow heart rates, chest pain that sometimes required treatment with sublingual nitroglycerin pills, assorted types of arrhythmias, and skipped beats) which landed me in the hospital multiple times; along with extreme fatigue, muscle and joint pain, arthritis, swollen and painful lymph nodes, shortness of breath and lung problems, dizziness and lightheadedness, vertigo, digestive and swallowing problems, high suceptability to infection, were often downplayed and I was frequently belittled by my doctors and a few of the nurses. There were times when I was so weak and sick I could barely move. I was in my twenties then, and was 'reminded' on multiple occasions that women in their twenties- women of strong, moral character- simply did not become seriously ill. Worse, I had heart problems- a man's disease. Women, particularly younger adult women, simply cannot have heart problems, I was told. It simply didn't happen. So I was berated on occasion for having cardiac problems, accused of overdoing with the caffeine despite having the newly minted MVP diagnosis, and there were hints that I might be using drugs (I've never used or abused drugs, I've never used an illegal drug in my life), and that's what was behind my heart problems. Even their repeated blood tests that confirmed I wasn't consuming any caffeinated beverages and never took anything beyond Tylenol or ibuprofen, and the heart medications I was prescribed didn't quell those suspicions. The mindset was- I must have been at fault, I must have been doing something wrong to have a heart condition with serious cardiac symptoms. 

I have now lived for fifteen years now with untreated, chronic Lyme, which is a progressive and life-altering illness for me. I am one of the ones who eventually had the “fibromyalgia” label pinned on me even though I don't have the give-away FM symptoms of insomnia/sleep disorders and daily brain fog, nor do I have restless leg syndrome, yeast infections, dry eye/dry mouth problems, interstitial cystitis, ADD, etc., etc that are common with fibro. The state I live in will not provide Disability, or health care for the uninsured for those labeled with fibromyalgia either.  

Reading “Beating Lyme”, reading Constance Bean's struggles with her Lyme Disease diagnosis and treatment and excerpts of other patients' struggles with their Lyme was a major revelation for me. Here I was- mistreated and sometimes even outright ignored medically, my family members told to completely discount the seriousness and severity of the nightmare I had gone through (even though in the early days, I had been hospitalized with heart problems several times, and even spent several days in ICU!) and I still live with; but at least now I feel somewhat less alone with my personal struggles with this illness, as I see there are many people out there who have gone through and live with the same things I did and still do. My supposed “freak show” symptoms that couldn't and didn't happen to other people- not to people of good, strong and moral character- are sadly in fact the norm for a whole lot of us, and this doesn't make us morally weak or “bad” people. So for me as a medically ignored and untreated chronic Lyme Disease sufferer with no health insurance coverage, at least this book provides some long overdue vindication regarding the seriousness of the symptoms and the progression of my illness.