A Lyme Disease Journal

Hi folks,

I’ve been meaning to write this for a while, and having recently acquired a new book that I especially love has pushed this up as a priority. I’ve read three books so far about lyme disease, each with a very different perspective, and I want to tell you a little about them. The books are Cure Unknown, The Top 10 Lyme Disease Treatments, and Healing Lyme (and hopefully soon in a future post, Beating Lyme). Full references below. Full disclosure: I was given the top 10 Lyme Disease Treatments for free in return for agreeing to review it.

I read these books over the last 6 months as I was beginning my own journey into the act of healing lyme disease. At the same time, I was beginning to do my own research into the disease, it’s actions on the body, cures, and the doctors who administer those cures. Each of these books provides a very different perspective on how one might approach a cure, and each has a different emphasis regarding how lyme affects the body. All three discuss the lyme-wars, and all three are written by people who feel that the IDSA view of the world is limited at best. As with the information available in person, the quality and perspective of the books I have read varies widely.

In my mind, the book that is most comprehensive, balanced, and informative is Cure Unknown, by Pamela Weintraub. Weintraub is a senior editor at Discover Magazine, and she, her husband, and both of her children went through years of misdiagnosed lyme, followed by years of treatments with varying success. Her book reviews everything about lyme — the history, the studies, everything. It’s got all the interviews in it and all the literature in it that I wish I had time to read. Despite her experiences, which do color the book, the literature review in the book comes across to me as complete and relatively unbiased. It was the first book that adequately explained to me how an auto-immune disorder might result from lyme, while also reviewing what I see as conclusive evidence that lyme may also persist past 6 weeks of antibiotic treatment. It does not attempt to tell the reader how they should heal their own lyme, but it does describe one family’s path to healing. It is a political book, a science book, and a deeply engaging story of despair and hope. Perhaps the only flaw in this book, in my mind, is the fact that it spends almost no space on the possible role of alternative treatments in healing: she does she interview practitioners of alternative treatments, or literature about them, and only briefly mentions them. Despite that, I highly recommend this book to anyone touched by lyme, or simply interested in a disease that has spawned a society of people and doctors defined by the fact that mainstream medicine has rejected the possibility or appropriateness of their existence, driven by tragedy, and enabled by the Internet. If you buy one book, buy this one.

Perhaps the complete opposite of Cure Unknown is the Top 10 Treatments. Despite the word “conventional” in its subtitle, this book is almost exclusively about alternative treatments for lyme disease. Almost no space is spent on the history or politics of lyme, and the book is really aimed at an advanced reader who has already familiarized him or herself with much of what is in Cure Unknown. As with Cure Unknown, the impetus for this book was personal experience — in particular, the experience not only of having lyme disease, but having even the lyme literate doctors run out of ideas of how to cure it after extensive antibiotic treatments did not work.

The Top 10 Treatments suffers from a lower quality of writing than Cure Unknown, and the work is not as clearly referenced as Cure Unknown. Neither Cure Unknown nor the Top 10 Treatments is written by a doctor, but Cure Unknown includes detailed information about studies and interviews with doctors that is missing from the Top 10 Treatments. Finally, at least in Pittsburgh, finding a doctor willing to administer any of the top 10 treatments listed is difficult at best (and some of the treatments are a little scare to administer on one’s own).

That said, this passionately written book was clearly based on extensive research and presents a comprehensive look at ways to support any treatment protocol you choose to undergo, and regardless of the accessibility of all 10 treatments, the treatments described in Chapter 4 (Detoxification) such as detoxification of the liver, sauna therapy, salt baths and exercise should be part of any treatment plan (and are sadly often not mentioned by doctors or in books). As Rosner says, “it should be standard practice to utilize supportive therapies that increase antibiotic effectiveness” — and I will add, therapies that reduce side effects (such as taking sacromyces daily while on antibiotics to reduce the risk of a yeast infection).

Healing Lyme, unlike the previous two books, is written by a master herbalist and psychotherapist named Stephen Harrod Buhner. This book is not driven by his personal experience with lyme disease, but rather by his experience healing patients with lyme disease. This book is older than the other two, and does not include all the most current research, but it is extremely well referenced and clearly written. It was the first book I read, and after reading it, I had a much deeper understanding of how lyme operates in the body and the ecosystem. At the same time, I found myself questioning how much in this book was true and how much was not. As a patient exposed to the lyme wars, I was disappointed by the style of the literature review in this book. Unlike Cure Unknown, this book does not explain the controversy around pieces of related work, nor does it directly argue why one view point may be more correct than another. Instead, it presents quotes taken from references. As an academic, I know that reading quotes out of context does not really answer any questions about a controversial research area. Despite these flaws, the book is a worthy read, especially after having read Cure Unknown. Also, this book is not simply a biology/ecology text — it is a treatment guide to using herbs to cure lyme. The use of herbs is completely ignored in Cure Unknown and mostly not a factor in the Top 10 treatments, so this provides a valuable additional resource (again, assuming you have access to a practitioner who can guide you if you select this treatment approach).

After reading all three books, I must admit that I am no closer to knowing what the right way to treat lyme disease is. For now, I am going with the approach that is closest to mainstream/for which I can find the most knowledgeable docs & most research — antibiotics. I’m also throwing everything I can at supporting the antibiotics, with supplements, salt baths, yoga, and so on as you have seen in my posts.

1. Cure Unknown: Inside the Lyme Epidemic (by Pamela Weintraub). St. Martin’s Press, 2008
2. The top 10 Lyme disease treatments: Defeat Lyme Disease with the Best of Conventional and Alternative Medicine (by Brian Rosner). BM Publishing Group, 2007
3. Healing Lyme: Natural Healing and prevention of Lyme Borreliosis and Its Coinfections (by Stephen Harrod Buhner). Raven Press, 2005