A Lyme Disease Journal

I’ve sort of been putting off writing this post because it’s a difficult and controversial topic… and I’m sure I will write many more on this topic… but for now, here are my thoughts on the medical disagreement plaguing patients with lyme disease. This is a very long post and only begins to scratch the surface…

First off, lyme is a complex disease, and the disagreements tend center around the more complex manifestations of lyme disease. If you are bitten by a tick, immediately develop a bulls eye shaped rash and other symptoms such as weakness or paralysis in your limbs (as my dad did), and you’re lucky enough to have a doctor who’s heard of lyme disease, chances are they will treat you right away with a long (e.g. 1 month) course of antibiotics and chances are that this will cure you. Also, no matter what view point your doctor subscribes to, he or she will tell you that you have been infected with a spirochete that is related to syphilis, is susceptible to antibiotics, and that you will most likely be free of symptoms when you are done with your antibiotics. If you go on to have symptoms after treatment, an understanding and sympathetic doctor will work with you on treatment. The disagreements most frequently arise in more complex and longer lasting cases, and in the best case have to do with the cause of symptoms.

To understand these disagreements, it is important to understand a little bit about the disease. Like syphilis, lyme will act on the body differently as time passes, and may invade more diverse areas of the body. When it is misdiagnosed either due to flawed tests or lack of familiarity with the disease, which mimics many other diseases, it may be made worse by (1) too short a course of antibiotics thought to be treating something else (2) a course of steroids, which actually helps lyme disease attack the body more successfully (3) the simple passage of time (it may take years for the correct diagnosis to be achieved). But the question that causes the most controversy is what happens after antibiotic treatment in one of these situations. There are essentially two hypothesis:

1. The lyme spirochete most certainly can survive a treatment of antibiotics. In cases where it does, you may have a relapse or a re-occurrence or may simply not improve. In fact, you may get worse over time if you are not treated appropriately (e.g. perhaps with stronger antibiotics or for a longer period of time). It would be malpractice not to treat you.
2. The lyme spirochete absolutely cannot survive a treatment of strong antibiotics lasting 4-6 weeks. If you have had this treatment and you are still symptomatic or become symptomatic again, you must either have some other illness or be suffering from some sort of auto-immune response caused by the original lyme infection. For various reasons any tests that might indicate the presence of lyme spirochetes in your system should not be trusted. It would be malpractice to give you more antibiotics as long-term antibiotic therapy can be quite dangerous and would have no point since there is no spirochete left to kill off

I have stated these in strong terms because the emotions around them are strong, and doctors in both camps will cite many articles supporting their viewpoint. Two good articles summarizing the literature supporting each argument are “‘Lyme disease’: ancient engine of an unrecognized borreliosis pandemic?” (1, above) and “A critical appraisal of ‘Chronic Lyme Disease’” (2, above). See more discussion of both viewpoints on this blog’s links page.

Now, I am no medical specialist, but I do work in a field where we study human beings and prove hypotheses about them. Although the stakes are less high, disagreements may arise in my field too. And when they do, conscientious researchers often try to create carefully controlled studies to help verify their point of view in the disagreement. As a friend and colleague pointed out to me recently, this strategy may lead to a situation in which one group of researchers is designing studies that are so carefully controlled that they eliminate the situations in which the conflicting hypothesis is true. So, both camps continue to prove their point without realizing that both points of view may be correct in some cases.

I would not presume to have a definitive explanation for why both points of view are true if this is even so, but I can give some examples of how this could occur. For example, it is possible that for many individuals including most of those for whom it is easiest to prove that they have lyme disease and no other infection, a single, strong treatment of antibiotics is quite effective and additional symptoms may be auto-immune related. These are also the individuals likely to qualify for studies designed by researchers in camp 2 (which states that lyme cannot re-occur). It is equally possible that in other more complex cases, lyme may re-occur, and that these folks are being studied by researchers in camp 1. A more inarguable possible explanation for lyme re-occurrence is re-infection: It seems highly plausible that individuals who live a lifestyle that causes tick exposure may continue that lifestyle, and may be bitten again, and perhaps this may happen more frequently than we know (since many lyme patients don’t actually remember being bitten by a tick).

In any case, what is not in question is that some individuals suffer long after they are treated for lyme. Whether this is solely an auto-immune response or co-occurrence of some other disease or whether it is instead caused by re-infection, they are suffering. They need access to lyme literate physicians who are willing to explain both sides of the situation, acknowledge where ambiguity or uncertainty exists, and support the need of these patients to find both the cause and the cure for their illness. Luckily, these physicians exist, but sadly for many patients they are hard to find.