Book Review: Cure Unknown, Inside the Lyme Epidemic, by Pamela Weintraub. 2008.
St. Martin’s Press, N.Y. 408 pp.
By William Olkowski, PHD.
10.20.11, reposted 8.17.12
This book combines the personal story of the Weintraub family, many others and renegade doctors fighting for the infected patients vs. the medical establishment who were blinded by ignorance. And it may still be the case as a check on the CDC and the NIH website will show. Weintraub and her husband are journalists who moved into a Lyme disease enclave in ChapaquaNew Yorkto escape the city environment. Their story of infection and the search for treatment and the story of thousands of others denied diagnosis and consequently treatment led her on a many year quest to find answers to this most unusual infectious disease complexes. The blinded ignorance is described over and over again and refers to first a steady myopia by academic researchers and government officials, most notably the CDC, who is supposed to be protecting us from such maladies, but in essence repeatedly dropped the ball. This is a most disturbing book undermines confidence in CDC, after all what else are they dropping from hubris. But the story is complex.
We now know that Lyme disease with its many diverse symptoms can be caused by at least 3 and up to six pathogens all transmitted by ticks, including the first found, a spirochete called Borrelia burgdorferi. And there may be more pathogens. Another spirochete, Treponemia pallidum, the causal agent of syphilis, was virtually knocked out by early antibiotics, particularly penicillin. If only the earlier experiences with syphilis were examined more closely by investigators things might have been different. And then there is the European experience with different strains which does not seem to be part of this CDC nor US considerations.
And then there are the clinicians who learned that the infections could not be treated successfully with a few weeks of antibiotics as the medical establishment said. These “renegades” were threatened with loss of license, brought before examination cabals and gave up treating patients from these threats. This adds another layer of stupidity but tells much about the current health care system in theUS, dominated by private insurance companies trying to maximize profits to the disregard for patient experiences. Repeatedly patients who knew something was wrong became highly frustrated by the inability to get real help from their medial professionals. Patients who get long term antibiotic treatments, some of which improve the lives of patients even when they do not cure, are consigned to a life long disease and high expense. For example, when denied a positive (usually blood test) diagnosis and subsequently treatment can spend up to $100,000 if they can find a doctor who is willing to go against the establishment. No wonder the insurance companies wanted to believe that chronic lyme did not exist.
The movie “Under the Skin” covers this ground but like most such exposés leaves out much of the science leaving the viewer with a sad feeling of another tragedy among so many others. Weintraub covers some recent science, including the great work mostly by veterinarians working with mice and other animals who show that the Borrelia spirochete can form cysts which are resistant to antibiotics and can hide in various tissues, particularly collagen based where they cannot be killed. This cyst stage and the odd shapes it forms was missed by early researchers who stubbornly resisted searching and acknowledging patient experiences to find the long term cause and treatments. Even today I don’t know the status of this situation as Weintraub’s book is now 4 years old already and possibly fast changing discoveries may provide some hope. This of course, assumes that the medical establishment gets off its high horse and looks further to account for actual patient experiences rather than assume they know everything.
One of the heroes of this story is a doctor who successfully fought the ignorant medical establishment and retained his license, Joe Burrascano. He has a website from which one can download his continually revised book on treatment. The book is sizeable and now in its 16th revision as he updates it as he learns more. His website should be explored as it contains many other resources for Lyme patients, especially the free documents: http://www.lymediseaseresource.com/Free_Ebooks.html. Burrascano’s website is far superior to either the CDC or NIH websites covering the same disease. Sometimes people never learn. No wonder some hate Burrascano.
The arrogance of many doctors and researchers is certainly a barrier, but that can have a human face. Insurance companies are just phone calls and premiums via phone and paper. And still our representatives look to private sources for medical help. Gads! My sympathies go out to those infected.