Quackery in Medicine: Chronic Lyme Disease

I love it when topics just land in my lap. It makes it so much easier to go through and research the topics. This one came to while reading a book, called Every Patient Tells a Story, by Lisa Sanders, MD. Dr. Sanders has collected difficult diagnoses for years, and in this book, she discusses some of them, as well as the importance of the physical exam in diagnosing them in the first place. It's a very interesting book if you're into the "House" side of medicine.

One of the cases she discusses is of a Carol Ann, who was diagnosed with Lyme disease, treated, but had persistent symptoms. Evidently, Carol Ann wasn't satisfied with what her primary care doctor was telling her, so she sought out a Lyme disease specialist. He diagnosed her with "chronic Lyme disease", and kept her on an extended bout of antibiotics to treat the symptoms. Seems fairly open and shut.

Before I go any further, a little background in Lyme disease is necessary. Lyme disease is caused by a certain bacteria, Borrelia burgdorferi, and perhaps some very similar bacteria. The bacterium itself is a spiral-shaped cell, much like that of Syphilis. As such, it is very difficult to culture and isolate in the laboratory, an aspect of the disease that makes diagnosis more difficult. The medical community has gotten around this, as well as other bacteria like that that cases syphilis and viruses such as HIV, by testing for antibodies in the blood. In fact, the laboratory test for Lyme disease is two part. The first tests for the presence of antibodies in the blood. But, these antibodies are specific for only a small part of the bacteria, proteins that are present in other bacteria as well. So, if the first test comes out positive, another test is done. This test, called the Western Blot, speficially looks for the types of antibodies present. Ten common antibodies are sought for, and the CDC has recommended that if at least 5 are present, the patient probably has Lyme.

The problem is that it takes time for antibodies to present, as it does with any disease. So, if the patient is given antibiotics to kill off the bacteria early in the course of the disease, antibodies may never fully develop, and the blood test will come out negative. Worse, if you have a history of Lyme disease, the test will come out positive (the body maintains antibodies in order to fight against further infection-this is how vaccines work), so it's difficult to say if the symptoms are due to a re-infection with the bacteria.

This makes diagnosing Lyme disease illusive. There are certain hallmark criteria. It is transmitted via insects who drink blood from infected deer, so a recent bite mark (often presenting as a bulls-eye rash) combined with achy joints, fatigue, etc. The symptoms can mimic those of the flu, fibromayalgia, and many other diseases. Most often, a course of antibiotics, lasting two weeks or so, will destroy the bacteria and the person will be cured.

But for 10-20% of patients, there are lingering symptoms. The patients can continue feeling achy, can develop memory problems and a whole list of other symptoms. The discovers of the disease call this post-Lyme syndrome. Others call it "chronic Lyme disease."

The proponents of chronic Lyme disease are many, claiming that the first round of antibiotics did not kill all the bacteria, that the bacteria somehow managed to hide and evade the deadly drugs. So, more antibiotics are ordered. Some people claim that you need to be on antibiotics for months, even years, before these individuals can fully eradicate the bacteria. Dr. Scott Taylor says that the reason it's not treated properly is because so many doctors are uneducated about it. He says that because the bacteria have toxins on their cell surface, only a few bacteria will trigger a debilitating immune response, so the only course of action is an extended bout of antibiotics, in order to get rid of every single bacterium present in the body.

That's the first flag for me. With all the problems we've been having with 'superbugs', extended use of antibiotics should never be promoted. The more antibiotics you use, the more likely common bacteria, such as strep and staph, will adapt to the drugs and be harder to kill, making it much more difficult to recover from an infection with these bacteria. Is it possible that the bacteria that causes Lyme disease has developed into a superbug as well? Yes, it's possible, but with the difficulty there is in diagnosing the disease in the first place, it's unlikely, especially since most people recover. If there were a superbug, it should be becoming more prevalent, with more people getting the chronic symptoms.

Since people get better when treated with antibiotics, if only for a short time, people have been adament that chronic lyme disease is real. Except that every study involving a placebo done with Lyme disease patients has shown that just as many people who get a placebo, up to 40% of patients. That's rather high for a placebo. Of course, as with any medical study, there are dissenting opinions as well.

Why do I classify this as quackery? Carol Ann, the patient mentioned at the beginning, eventually stopped seeing a Lyme disease specialist and went to a rheumatologist, someone who specializes in inflammation in the body. Turns out, she had a disorder called PMR (polymyalgia rheumatica), which caused all the symptoms the lyme disease specialist had called chronic Lyme disease. It was completely cured with a extended treatment of steroids. According to Sanders, a study with 200 patients diagnosed with Lyme disease showed that only 44 of them (22%) had active Lyme disease, and only 19% had a history of Lyme disease. The other 116 had no evidence of Lyme disease, past or present. Some of them likely had it at one point, and just didn't have enough exposure to develop antibodies. But 14 had rheumatoid arthritis, 15 had osteoarthritis, 8 had some other type of infection, and another dozen had some sort of neurological disorder, such as multiple sclerosis or Lou Gehrig's disease. Forty-nine of 116 patients diagnosed with Lyme disease actually had something else.

As always, I encourage patients to take charge of their health. If you think something's wrong, see your doctor. If he or she can't figure it out, go to a specialist. If you still don't have answers, go to the internet. Just beware; not all information is good. It's not difficult to find information on chronic Lyme syndrome, despite it's uncertain diagnosis, but a vocal minority has certainly kept it in the spotlight. Most of all, though, if whatever treatment you're on isn't working, search for another answer, because the one your doctor gave you probably isn't the right one. No one should have to be on antibiotics for months to kill an infection.