Monday, June 16, 2008

How do you know when I'm cured and I can stop my antibiotics?

There is no easy answer. This question comes up every day and I'm afraid the answer's I give leave the patients confused and befuddled. Chronic Lyme is a fuzzy area. There is not reliable indicator of cure. Most clinicians think of remission rather than cure. As a general rule of thumb, antibiotics are continued until the patient feels 100% better, and then continued for two more months. If the patient does not relapse when the antibiotics are stopped then the disease is in remission. If symptoms return then further antibiotic treatment is necessary. When relapse occurs there are differing patterns. It may occur almost immediately, within days or weeks, or it may occur in a more insidious fashion over many months. Relapses vary as well. In some patients cognitive improvements may persist while joint pain returns where in other patient's the cognitive impairments are the only thing to return. It may be difficult to distinguish a relapse from a separate new infection. It is also possible to have relapses triggered by other infections such as mononucleosis. It is impossible to know how long the antibiotics will be necessary for a given patient. Those patients who respond quickly and vigorously to antibiotic treatment are usually able to stop drugs sooner. Combination antibiotic therapy may decrease the duration of treatment. If medications which target cysts are added some patients will go into remission more quickly. ILADS reports that chronic Lyme patients are frequently treated for one to four years. Dr. Jones, the leading pediatric Lyme authority has reported treatment durations of 3 to 7 years. In my experience, treatment has varied from 6 months to indefinite. Many patients are better after 9 months a year, 18 months or two years. Others require indefinite therapy. Labs don't help much. It has been reported the improvement in CD57 levels is a marker of improvement. This has not been the case in experience. Antibody levels and bands are of little help. I like to see improvement in metabolic markers. If vitamin levels, B12, folate and D normalize, this is a good marker that the disease is no longer active. Clinical exams may improve, but this is not a great marker. Peripheral neuropathy may persist when the patient is better. It may continue to improve over a period of months or years after antibiotics have been stopped. Ultimately each patient is different. Many factors come into play: Individual immune responses, duration of illness, organ involvement and other unknown factors. There is no assay which can quantify the amount of spirochete in the bodies of patients. So, duration is individualized and based primarily on the patient's symptoms.

1 comment:

girl Mark said...

you described D levels quite extensively in a dedicated post- what are the tests for the other vitamin levels/b12/folate? I haven't read the entire months of blogs yet, but it would be good to have this info in the same place as this blog entry since the topic is such a burning question for us patients.