The Management of Chronic Lyme disease
Our interest in chronic Lyme disease was heightened when in 1987; we noted and reported in Lancet, that some people with amyotrophic lateral sclerosis (ALS) had very high titers against the organism that causes Lyme disease. Since then, perhaps because of our proximity to “tick country” patients that have complaints commonly associated with Lyme disease, have been referred to us diagnosis and treatment.
There are some “givens” regarding Lyme disease. They are: There are no really good serologic tests for Lyme disease and negative serology does not rule out this disease; the characteristic bull’s-eye skin rash does not always occur; and most cases of proven Lyme disease respond to a 10 day course of doxycycline and have no further difficulty
A controversy regarding chronic Lyme disease exists. Some claim that the disease exists rarely or not at all. Others, which include this clinic, feel that it does exist. It can be diagnosed clinically, in individuals who have excellent chances of exposure to ticks and who develop fatigues, chronic fever, lymphadenopathy, lack of libido, and fleeting skin rashes, days even weeks after exposure to ticks. We believe that the best way to rule out the possibility of chronic Lyme disease is by empiric trials of first oral and then intravenous (IV) antibiotics.
Our approach to patients that we see in consultation for possible chronic Lyme disease is as follows: A complete history, physical and laboratory examination is done; we consider other diseases such as chronic fatigue syndrome (CFS), fibromyalgia, rheumatoid arthritis, hypothyroidism, cancer and other autoimmune diseases. There is a combination of factors that help in ruling out these diseases. They include: Joint pain and fever are not a major feature of CFS or fibromyalgia but are seen in Lyme disease; our thyroid studies usually rule out thyroid disease; and other autoimmune diseases and rheumatoid arthritis are ruled out by appropriate laboratory studies as are occult carcinomas. In considering Lyme disease we do serologic studies. Interestingly, we have found that the Lyme Western Blot test may be positive even when the Lyme antibody test is negative. On request, we send the blood to specialty labs that make claims regarding the sensitivity of their Lyme tests. We have not found this to be very helpful. Where central nervous symptoms predominate and mentation seems a problem, we occasionally test the cerebral spinal fluid. In a few cases, this has substantiated the diagnosis.
One interesting finding that has surfaced in our laboratory studies is that frequently patients have antibodies against “cat scratch” disease (Bartonella henselae). We interpret this to mean that indeed the patient has been exposed to ticks or that there is a cross reactivity between Bartonella and Borrelia (Lyme) organisms, or that a mixed infection has occurred from a tick bite. On the latter basis, we include zithromycin by mouth when we treat Lyme disease intravenously.
When all is said and done and we and the patient feel that other things have been ruled out and that there has been bona fide tick exposure, regardless of whether the patient remembers a bite, a course of IV treatment is started unless the patient has not had adequate treatment with doxycycline. If that is the case, we try four weeks of oral doxycycline. If there is no response, we order a six week course of IV Ceftriaxone. Usually, this can be arranged through a home care service. These services have someone stop in daily to give the injection or the patient and/or his family can be trained to administer it. We use Flagyl to prevent Clostridium difficille super infections and get weekly blood work. If there is a satisfactory response and the patient has a recurrence, we occasionally repeat this course some months later.
The first symptoms that seem to be helped by the IV treatment are cognitive difficulties and then the joint pains and fever disappear in some cases in a week or two. If a Herxheimer reaction occurs shortly after the IV therapy is started, it represents some evidence that the patient did have living Lyme disease organisms in his/her body that were destroyed.
The most convincing study that suggested that an approach such as this is beneficial is a $4.7 million study funded by the National Institutes of Health by Dr. Brian Fallon and his team at Columbia University in New York. They found that patients who they felt had chronic Lyme disease often improved after an IV program similar to ours.
At this point, while IV treatment for presumed chronic Lyme disease has not been scientifically established, a case can be made that the careful clinical observations by clinicians should count for something. It is this frame of evidence that we have shared our observations.
Has our approach “proved” that chronic Lyme disease exists or we have helped patients with it? No, but if we and some of our patients had not thought that this approach has helped them we would not be including it in this website.
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