Can you introduce yourself, how did you get involved with Lyme's disease.
I am a physician with training in internal medicine, anatomic pathology and critical care medicine. After completing a Fellowship in Surgical Critical Care Medicine and one year as an attending on the Surgical Critical Care Service at the Washington Hospital Center's MedStar Unit (trauma & post-open heart) I relocated to Westchester County, New York (where I had gone to medical school: New York Medical College) to start a private practice.
I knew almost nothing about Lyme disease at that point, only knowing the 'name' of the disease. Unwittingly, I had 'plunked' myself down in the heart of a (then) burgeoning epidemic of Lyme disease. Like any internist at the time, I started seeing patients who were contracting Lyme disease. I found they did not 'behave' the way the 'books' said they ought to.
Professor Zhang mentioned the case of Vicki Logan in his interview. Can you tell about her case in a way the reader can understand?
One example of this, was the case of Vicki Logan, a pediatric ICU nurse who consulted me in the late 1980's. She had developed a gait disturbance and had seen many neurologists. She had an unexplained chronic meningitis with no diagnosis. She gave no history of tick bite or rash, but had grown up in a tick-infested area of Westchester County (Goldens Bridge). I studied her for a year and could not make a diagnosis despite intensive study using the best tools available. I decided to treat her for the possibility that she might have Lyme disease since I could not exclude the diagnosis.
She had spinal taps before and after 3 weeks of intravenous cefotaxime which made no difference clinically in her status and did not improve her meningitis. For good measure, she was treated also with 4 months of minocycline, again, this made no improvement in her condition. She continued to slowly deteriorate and she contacted me about one year later and begged me for another spinal tap. At that point I had started working with the Centers for Disease Control in Fort Collins, Colorado. They supplied me with BSK-II culture media so when I tapped her December of 1991, I also cultured her for borrelia.
A few weeks later I received a telelphone call from an excited David Dennis of the CDC to let me know spirochetes were growing from her spinal fluid. These were later shown to be B. burgdorferi. Vicki was home and wheel-chair bound and had no pets. It is very unlikely she was infected or re-infected with Lyme disease between the time she had been treated and when she had the spinal tap from which Bb was isolated.
When the diagnosis was established, she was treated with 3 months of a 'pulse' regimen of cefotaxime IV and her spinal fluid findings normalized and her condition modestly improved. Her case made the front page of the New York Times Science Times, August 1993.
Her illness occured during the same time that the system of managed care was implemented in the USA. How did that matter?
Lyme disease is the first infectious disease of epidemic proportion to makes its appearance after the advent of 'managed care'. Vicki's access to care was definitely impeded by this 'entity' devised by government and corporations ostensibly to improve care but mainly to constrain costs. It became almost impossible for her to receive the treatment she required.
The care she required was deemed 'experimental' and thus not reimbursible. Whenever she had been able to be treated with 3-6 months of intravenous antibiotics, her condition improved in objectively measurable ways. When not thus treated, her condition deteriorated.
Can you indicate the difference of how Lyme was managed in comparison to other diseases from the viewpoint of managed care?
Since the Infectious Diseases Society of America and the Centers for Disease Control promote the notion that 'chronic Lyme disease does not exist', insurers using 'managed care' as a tool, have felt justified to deny reimbursement for care for long-term antimicrobial treatment. Likewise, disability insurers also often deny claims for those disabled by the effects of chronic Lyme disease, a 'non-existent' condition. This is in striking contrast to the care of persons with HIV/AIDS, an acknowledged and accepted medical illness for which medical and disability insurance coverage is assured.
You did not only deal with the problems of Vicki's treatment you also ran into problems with the system, do you see ways to improve the mechanisms of that system so that they will work for people with Lyme or other diseases where lack of true consensus plays important role?
The 'system'. Well there are many issues with the 'system' in general and some 'specific' to the Lyme problem. The 'corporatization' of medical practice is an over-rideing issue affecting medicine widely. It happened to come to ascendence as Lyme was emerging as a new infectious disease. I highly recommend The Social Transformation of American Medicine by Paul Starr who accurately predicted 'the coming of the corporation' in medicine.
So, what used to be a personal relationship between physician and patient, now has the intrusion of 3rd parties, including insurance companies, government and 'vertically integrated' health care systems (VICS). With the compulsion to use EMRs (Electronic Medical Records) by governments and insurers and VIHCS, algorithms of care are highly 'systematized' and 'drop-down' menus link to references for the peer-reviewed literature.
However, it is important to ask who selects the literature? How is 'consensus' developed? To what extent are practice guidelines based on good evidence? How much of it is 'expert opinion' without a lot of data? How much does conformance to 'the average' actually undermine the 'specifics' of individual patients? Then, when you get guidelines as in Lyme disease where there is wide disagreement about basic assumptions, then you really get in to difficulties.
And especially so, if the authors of these guidelines are covertly acting as 'expert' consultants to insurance companies in setting their determinations of 'medical necessity' vs. 'experimental care' in order to limit their financial liability to their insureds. Richard Blumenthal's investigation of the process involved in the creation of the 2006 IDSA Lyme disease guidelines exposed these kinds of problems.
Furthermore, there is an incestuous relationship between the CDC and the IDSA, with many academic experts in positions of power having been with the E.I.S.: Epidemiology Intelligence Service of the CDC. There is also an ideology, which also happens to cohere (as is not uncommon with ideologies) with the economic interests of the adherents of the ideology. These issues will be remedied, if at all, through shifts in where the 'power' lies. Are patients able to change power relationships? Can they do so through the legislative process?
As more and more individuals in society at all levels become affected and realize the difficulties which Lyme disease actually poses, there sometimes ensues a 'tipping point' where legislators see that it is in their own interests and that of their constituents to compel change. This happened in the State of Massachusetts, where legislation was proffered by both houses of the legislature compelling insurers to pay for treatment prescribed by treating physicians. The Governor of the State, who previously had been CEO of Harvard Pilgrim Health Plan vetoed the bills.
Then, incredibly, both houses of the legislature over-rode the Governor's veto. Truly an amazing situation - a testament to the power and determination of the patients but also the extent to which the epidemic of Lyme disease in Massachusetts had affected the families of legislators themselves, who perceived the injustice of the situation.
Many Lyme patients are confused. The contrast in what they experience and what the guidelines and textbooks say about the disease is huge. Can you tell us about the development of these guidelines and textbooks?
Confused patients? I would have to say being in this field, if one is honest, is difficult for the most astute physicians and scientists. Because it is very complex, people are very ill, we don't have really adequate diagnostic tools to tell us clearly just what the situation is, what disease or diseases the patient is harboring. So, clinical judgment and experience is important and not easily earned. In my opinion we could be much further along than we are. However that will require a much bigger societal commitment of resources and scientific/medical talent.
Our former minister of Health, mrs. Schippers said that guidelines do not serve as a legal framework, but how does this play out in practice?
It is nice to believe that Medical Practice Guidelines are just that, informal guidelines, however, in practice they are often used as weapons against practitioners, even if the guidelines are flawed. They can also stifle innovation. The Institute of Medicine singled out the 2006 IDSA Lyme disease guidelines as an example of a guidelines development process gone awry. Sadly, the CDC has continued to hold these up as 'the best available science'. This holds sway in the US and across the globe to the great detriment of patients.
Vicki Logan's case was very well known but how often do you have had similar cases and were they the rule or the exception?
Vicki Logan's case was exceptional, but it has not been unique in my practice. I have had other similar cases, for example the case of Martin Eisenhardt. But Vicki' case is one of the best documented cases in the world. Her tissues are being subjected to ongoing studies by first rate scientists and there will be additional lessons forthcoming from her case, which, I believe, honors her expressed wish to benefit others.
It sounds like there is a lot of distress and human rights are at stake, what are you doing at the moment to help?
Ultimately, these issues boil down to human rights abuses. What has been going on domestically and worldwide needs to be viewed in that light. Those who have engaged in systematic medical neglect of persons with chronic Lyme disease need to be 'called out' and 'called to account'.
Dr. Kenneth Liegner, author of 'In the Crucible of Chronic Lyme Disease'
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