There were issues about this diagnosis even very early on in the 80s and, as tests were developed, primarily Western Blot tests were one of the first tests that were actually being used for studying purely the clinical manifestations with the disease. The University of Conneticut, where I was, the laboratory medicine group, Dr Tilton was in charge of that; he then left the University in order to establish his own commercial group and had available various tests. I became interested in the disease and being at the State University we established a Lyme Disease clinic and that is where I began to study the disease and began seeing patients and seeing what the issues were.
Now over the years, almost 20 years now, that we have been looking at the disease, I then moved to Boston University in 1993 and I was there until last year when I ‘retired’. I still am very busy seeing patients on Wednesday in Boston and on supply and on Saturdays and still doing clinical research forming our own company to look after the toxin that we have discovered and one product that the Lyme bacteria make that may or may not have anything to do with clinical symptoms but hopefully looking at ways to a better diagnosis and better treatment of the disease.
The talk today “Issues in the Diagnosis and Treatment of Lyme Disease” is designed really to review where we are with what we know about diagnosis of the disease and treatment of the disease. It raises more questions than we have answers and that is the state of play. I think we have learned a lot in the last 15-20 years but much remains to be learned about this disease. As with any other evolving illness you will have controversy about its origin and what to do about it. And certainly, Lyme Disease, and what I call the Lyme-like diseases that you may label chronic fatigue, fibromyalgia, Gulf War Illness, ME, chemical sensitivities. All of these have a lot in common in terms of being multi-symptom disorders. I am going to focus primarily on the later manifestations: the chronic manifestations. I presume if we have time in the Question and Answer period that follows or tomorrow morning that we can get into issues of tick bites, early Lyme Disease and what to do about it. I think that those are relatively easy compared to what happens once you have set into the chronic multi-symptom disorder.
So I am going to be looking at the diagnosis in terms of whether the clinical criteria of whether the laboratory tests that are available and what imaging studies are available and then we will get into treatment after that.
Now, in terms of diagnosis, the clinical criteria, many people know that there are a lot of symptoms, that if you look at the studies done primarily from the group of Nancy Shaddock that looked at Nantucket residents and the group out of Westchester County, Art Weinstein was the senior author, Nancy published papers in the mid 90s. They followed patients who had documented tick bites, documented rashes and followed them over a number of years. That 30 to 50% of them had continuing multiple symptoms of varying degrees. Now in her latest publication, Dr Shaddock observed that those symptoms had become trivial over time. That was her understanding. Dr Weinstein’s group did not do subsequent studies. But it has become clear that patients with Lyme Disease do develop the chronic fatigue/fibromyalgia syndrome which to me clinically is very difficult to distinguish one from the other.
Having also been fortunate enough to be part of the Gulf War Veterans Illnesses studies by the Veterans Affairs Department in the country, the definition of Gulf War Veterans Illness by the CDC is patterned after chronic fatigue. It doesn’t have the four out of eight symptoms that you have in addition to fatigue but basically there are three major symptoms and the major symptoms are fatigue, musculoskeletal and neuro-cognitive and just as with Gulf War Illness I believe that Lyme Disease could be characterised as a major criteria and minor criteria. This might to some of the older generation bring up the Jones Criteria for Rheumatic Fever – they were major criteria and minor criteria. Dr Burrascano has attempted to put together a points system. Whether those are correct, they have not been validated so they need to be validated as to what/how to appropriately measure this and this is part of the problem because we are dealing with symptomatology and not objective physical signs and laboratory data necessarily.
1. SYMPTOMS
2. TESTING
3. TREATMENT
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