I gave a public lecture at the Mendocino Coast District Hospital on the controversies surrounding Lyme disease. You might wonder how the existence of a disease could be the subject for discussion, but it is!
The entire medical profession agrees that after the bite of a tick, if a patient develops the classical “bull’s eye” rash, and then comes down with fever, joint pain, lymph node enlargement and severe fatigue, this represents acute Lyme disease which requires immediate antibiotic treatment. So far, so good. But here is where medical opinion diverges. Most medical authorities believe that 10 days to 3 weeks of antibiotic therapy cures this disease, and then we are done.
Another medical group, known as ILADS, which has followed and treated thousands of such patients, has discovered that 10 days of treatment is nowhere near enough to ensure a cure. They have found that 6 weeks of antibiotic therapy is required for adequate therapy. Now this, in itself, would only represent a minor disagreement.
However, what happens next is where the controversy intensifies. Firstly, the ILADS group has discovered that only 30% of Lyme-infected patients actually develop the “bull’s eye” rash, meaning that lesser bites or reactions may result in Lyme disease. This means that a significant number of seemingly minor bites may cause Lyme disease, a piece of information that other physicians do not accept.
Second, and more important, the ILADS group has seen thousands of patients in whom this diagnosis has been missed, or inadequately treated, develop chronic Lyme disease, a far more serious and widespread illness. Chronic Lyme disease causes such a host of symptoms that it is being called the great masquerader, because it can look like so many other illnesses. The cause of Lyme disease is an infection with the bacterium Borrelia burdorfeii, a spirochete similar to syphilis, which itself used to be called the great masquerader. These symptoms include, but are not limited to, joint pains (which can mimic rheumatoid or psoriatic arthritis), neurological disorders (which mimic Parkinson’s disease, ALS, MS, and Alzheimer’s disease), unusual patterns of numbness and tingling in different parts of the body, overwhelming fatigue, difficulties with focus, memory, and concentration, anxiety and depression, unusual psychological perceptions, tinnitus, swollen lymph nodes, intense sweating episodes, burning on the bottoms of the feet, intestinal upsets, tightness in the chest, heart palpitations and cardiac arrythmias, headaches, blurred vision, and rashes. If not clearly identified and treated properly, these symptoms will intensify and become debilitating.
Now here is the problem: the majority of physicians do not accept the existence of chronic Lyme disease. Hence, it is not diagnosed. It is not treated. The unfortunate patients who have this condition are told that it is a “post-Lyme syndrome”, a verbally facile way of dismissing all of these symptoms, and they are offered anti-depressants or psychotherapy as a coping strategy.
This is a travesty, and one for which I find myself apologizing daily.
Let me give you just one example. A brilliant physicist came to see me about a year ago with what was diagnosed 4 years previously (by the head of neurology at a regional academic teaching hospital) as atypical Parkinson’s disease. Although he had many of the major symptoms of Parkinson’s, he had not responded at all to medication, making it “atypical.” He had done his own research and wondered whether this could represent Lyme disease, and had obtained the best test currently available, which is the Igenix Western Blot test. He showed the results to his neurologist who explained that Lyme was not a possible diagnosis. Four years later, he had deteriorated to the point where he came into my office in a wheelchair, almost unable to speak because of his raspy, weak voice. He showed me the original test, which was absolutely positive for Lyme disease by any criteria one could apply, and we started antibiotic therapy immediately. A month later, he came back to my office no longer requiring the wheelchair, clearly improved, and he has continued to improve with treatment. Simply put, he did not have atypical Parkinson’s, but untreated, undiagnosed Lyme disease. For those of you out there who have been diagnosed with “atypical” disease, please think about the possibility of Lyme disease.
If only this were a rare event; unfortunately, we see patients every single day in our office where the diagnosis has been missed (even denied), and have suffered for years and years in every way imaginable. In addition to having a terrible, debilitating disease, it has been suggested to them by their physicians, and passed down to their families, that their illness is psychogenic. It makes these patients doubt themselves, even their own perceptions, which adds another dimension of depression and isolation to an already difficult existence.
To the thousands and thousands of patients out there who have been treated this way, ignored, unheard, and suffering with a treatable illness, I deeply apologize for my profession and its unwillingness to open its eyes to what is clearly a major epidemic.