I really can't recommend this book enough for readers who are either Lyme patients or care about someone who is a patient - it is a well-written account of one woman's journey of struggling with strange symptoms that were plaguing her and her family for years. Her determination to find the cause, and how her actions led to the discovery of Borrelia burgdorferi in ticks led to all that people in the Lyme disease patient community are familiar with now.
Gandhi once said, "Be the change you wish to see in this world," and I think Ms. Murray's life reflects that statement.
Moving on to the question of "What happened?" in regards to how the introduction of Lyme disease back then led to the state of affairs over Lyme disease now (which is something people ask whenever they read the 1993 Senate testimony I recently posted): It's not that easily answered.
A combination of physicians who weren't sure how to treat Lyme disease not long after the disease had been discovered, physicians who came down ill themselves and self-treated for longer if their symptoms relapsed, the media's role in educating the public about Lyme disease leading to fearful patients, politicians in Connecticut who were slow to respond to patient demands for improvements in diagnosing and reporting the disease - all of these contributed to the atmosphere around Lyme disease.
The slow response of politicians and doctors to increasing numbers of patients suffering from Lyme disease led to the creation and growth of Lyme disease patient support groups. Even back then, by 1992 there were over 100 patient support groups for Lyme disease.
I quote an excerpt from Polly Murray's The Widening Circle, pages 266-267:
"Some doctors I have encountered think that Lyme disease is easily treated by a single course of antibiotics in its early stages; if patients fail to overcome the infection after one treatment, their future complaints are considered to be not associated with Lyme disease. These doctors believe that once a patient is treated, he or she no longer has Lyme disease.So, during this time, according to Polly Murray's account, people who were incredibly sick with Lyme disease were in the media spotlight and it led to fear in many people. The fear was not entirely unfounded - people do suffer greatly from Lyme disease. But if caught early, a significant number of patients go on to do well.
In 1987-1988, tremendous media attention was given to the disease; I think this was generally beneficial. Correct information must prevail over ignorance. However, when the public saw the grave outcomes suffered by the patients who appeared on TV, many were scared that if they were bitten by a tick, they would have devastating illness. While a number of people do not respond to treatment or have not had treatment and have had severe complications, a proportionately far greater number are treated and seem to do well. (It is true, however, that some may relapse or enter another stage of the disease, sometimes many years later.)
Some doctors during this period of media attention were inundated by people worried that they might have the disease; they called this anxiety Lyme hysteria and Lyme paranoia. Some patients, as I have mentioned, were told they were "antibiotic junkies". There seemed to be many extremes in attitude, some physicians being unwilling to diagnose Lyme disease even with a classic presentation, and others willing to treat anyone with any vague symptom for Lyme disease. The unreliability of Lyme tests, as we shall see, did not help matters."
Why this is remains a complicated answer, and something that this blog investigates over time - it won't be limited to a paragraph or two of text.
At any rate, some people were afraid they had Lyme disease, and rather than be compassionate, some of these doctors were making negative statements about such patients. How many, I don't know - Ms. Murray doesn't elaborate on numbers.
It definitely does seem as if there was a greater mix of opinions in the medical profession about how to diagnose and treat Lyme disease. It was less monolithic, and the push from a handful of select professional medical organizations to set the standard of care for all primary care physicians wasn't in place yet.
Ms. Murray continued:
"A number of physicians continued to say that media hype was distorting the true profile of Lyme disease and was scaring people unnecessarily. True, the adverse outcomes were proportionately rare; however, to the rare patient with a devastating outcome, statistics are irrelevant. The fact remains that the more proper information citizens and physicians are armed with, the more likely they will be to protect themselves from Lyme infection and to detect and treat Lyme disease early so that devastating outcomes will be less likely.
As the number of cases continued to rise, some physicians in endemic areas began to see great numbers of patients with Lyme disease. With their growing experience, many of these physicians became convinced that suggested treatment regimens were insufficient to combat the disease in some cases and were calling for longer and more aggressive treatment. They began to encounter patients who clinically seemed to have Lyme yet tested negative, while a number of patients continued to have persistent symptoms and remained chronically ill for years despite treatment. This area of chronic complications is the most controversial and the most disheartening part of the Lyme disease story."
So as the number of cases went up, so did the number of patients who had seronegative Lyme disease and those who seemed to have a condition resistant to treatment.
To get a complete picture of how a disease is going to interact with a population, one can extrapolate what percentage will be infected from a smaller sample size - but it's harder when the presentation is not consistent across the board. Harder when a disease can be seronegative. Harder when it's suspected a disease can be asymptomatic and latent, only to present in its third, most serious stage later.
Part of what fueled the controversy back then was research in 1989 by V. Preac-Mursic and also doctors who were infected with Lyme disease who self-treated themselves longer than what Yale's suggested guidelines were at the time (that 2-4 week treatment length everyone in Lyme world is familiar with).
Ms. Murray wrote,
"Evidence has been found for the persistence of the spirochete in various parts of the body, despite antibiotic treatment and negative tests. A 1990 paper by V. Preac-Mursic and colleagues reported studies of patients who had originally been seropostiive, had been treated with antibiotics, and then had become seronegative. However, spirochetes could be cultured from skin specimens and spinal fluid from these patients, showing a persistence of the infection. In her summary, Dr. Preac-Mursic said, 'We conclude that early stage of the disease as well as chronic Lyme disease with persistence of B. burgdorferi after antibiotic therapy cannot be excluded when the serum is negative for antibodies against B. burgdorferi from CSF [cerebrospinal fluid] and skin biopsy in our patients after antibiotic therapy with normal CSF-values and negative serological tests for B. burgdorferi raises important considerations in the treatment of Lyme borreliosis.' Indeed, this study raises important questions as to both the adequacy of antibiotics in treating the disease and the reliability of the tests in detecting the disease."
The above mentioned study, for the curious, is this one:
PREAC-MURSIC V, WEBER K, PFISTER HW et al.: Survival of Borrelia burgdorferi in antibiotically treated patients with Lyme borreliosis. Infection (1989) 17:355-359.
To see the abstract for this paper (about halfway down the page) and papers with similar focus, I recommend this collection of links found at Lymenet Germany:
There's a lot of science information on the Lymenet Germany web site - much of it in English - so I recommend checking it out some time.
Anyway, knowing this and other research about persistence only fueled the controversy at this time.
By the time 1992 rolled around, and the Fifth International Conference on Lyme Disease was held, the controversy was present at the conference itself.
As Murray reported:
"A number of papers submitted by physicians in endemic areas had been rejected by the conference's program committee. After protests from support groups and patients concerned that important new information on the disease was being excluded, the committee reversed its decision."
Does this sound familiar at all to any of you reading right now? Like maybe how things went down with the October 2010 Institute of Medicine workshop on tickborne illness?
"It was my feelings that the patients who attended the conference primarily wanted better research and information on treatment evaluation and the development of more effective therapies and techniques of prevention. They were obviously interested in a cure. Many had found that the prescribed four-week treatment with antibiotics was not sufficient, and that they relapsed if not treated for long enough period of time. They questioned commonly accepted paradigms of the illness and believed that important questions were not being investigated."
And later on,
"After the conference a number of patient representatives wrote to its heads, citing six papers presented at the meeting which endorsed the theory that the spirochete persisted even after treatment and that a patient could be seronegative and yet have Lyme disease. They 'asked for more research on pathogenesis, long-term antibiotics and innovative drug delivery systems' and 'offered their services as participants in an NIH-sponsored effort to find a cure for chronic Lyme disease.'
Those patients sound just like me! That's what I'm asking for, too - more research on pathogenesis, long-term antibiotics, and innovative drug delivery systems.
So, as you can see, the issue of Lyme disease and its treatment being controversial has been with us for many years. The problems and concerns which patients faced twenty years ago are, sadly, the same problems and concerns they face today.
Where do we go next? What can patients do to change this state of affairs without reinventing the wheel?
A lot of awareness has been raised about Lyme disease in recent years - the publishing of Cure Unknown, the making and distribution of the film, Under Our Skin; the increasing online presence of large scale Lyme disease patient social networking sites, and numerous campaigns, fundraising drives, and events have been held to get more attention for Lyme disease.
How much this helps towards getting the research that is so badly needed remains to be seen. The funding and development of the Columbia University Lyme and Tickborne Diseases Research Center is definitely one of the bright spots in the Lyme patient community, but more such spots are needed and were needed years ago.
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