Frustrations with Chronic Lyme
A recent New York Times article entitled “When Lyme Disease Lasts and Lasts” discusses the controversial diagnosis of Chronic Lyme Disease. In the article it discusses a New York lawyer who had been diagnosed with multiple sclerosis. Her symptoms included fatigue, headache, joint pain, neuropathy, and visual difficulties. The doctors found the test for Lyme disease was negative (This is common in chronic Lyme disease). In desperation she sought out a specialist in Lyme disease. This doctor placed her on antibiotics and she did start to slowly recover.
I’ve heard this same story over and over. In fact this is similar to my story. I had come to the point I was sure I had multiple sclerosis. I had chronic weakness, sever fatigue, facial pain, electrical shocks, and various other symptoms.
Being upset and depressed about my health spiraling out of control, I sat with down with my wife to discuss the options. I’m glad that she was thinking clearly as she remembered Lucy our little dog had been limping recently and was diagnosed with Lyme disease. She said maybe you should get tested for Lyme.
As I mentioned before many Lyme disease tests are negative. I used IGeneX which specializes in testing for tick illnesses. Their protocol is a bit broader than most tests and the test is more sensitive. Sure enough I did test positive for chronic Lyme disease and knew I had to find a doctor who would treat the illness.
It isn’t easy to find a good “Lyme” doctor. Doctors who treat Lyme disease have been persecuted and prosecuted in Connecticut and this has resulted in many just stopping or going underground. It isn’t always easy to find one with a sympathetic ear or an open mind.
It is a good time to talk about the different forms of “dogmas” in the treatment of Lyme. I use the word dogma as the faith in what some doctors believe in Lyme disease is seen as incontrovertibly true.
Different Schools of Thought on Lyme Disease
The first school of thought arises from the initial outbreak in 1975 in Lyme Connecticut. The disease at first manifested as a cluster of rhematological disorders so it made sense that it was investigated by a rheumatologist. The first doctor from the Center for Disease Control (CDC) that arrived on the scene for investigation was a rheumatologist. Since the doctor is a professor of rheumatology at Yale University much of the research into Lyme disease from that institution comes with a rheumatology mindset.
The result of this is the belief that you should be cured by a 6 week course of antibiotics. If you don’t feel well by then people have been blamed for having chronic fatigue, mental illness or fibromyalgia (It is interesting because in the past chronic fatigue and fibromyalgia were blamed on mental illness). And then we see that those with chronic pain of are often treated by the rheumatologist with medications to treat the fibromyalgia and become a chronic patient. However now days most people are diagnosed with post-treatment Lyme disease syndrome (PTLDS) which really means they don’t’ know the real cause. It is thought to be autoimmune and again is treated by the rheumatologist.
I left out the doctor’s name as there is sometimes a great deal of anger towards him. He is a rheumatologist and that is going to be what he knows and his research focus. Let’s not blame him lets blame our non-holistic medical system of a symptom and a drug. It is what is to be expected when you are trained to view only one system it is hard to see past those blinders.
Infectious disease doctors are a bit more open to treatment longer term antibiotics. They seem to be much more open to treating patients with symptoms of Lyme disease even though they tests are negative. They understand the current Lyme test has a specificity of around 30%-50%, which means that it will not identify 50%-70% of Lyme disease cases. I was lucky enough to see an infectious disease specialist who had a wonderful understanding of Lyme disease and was able to treat me appropriately.
In psychiatric research results are for the most part reported by the patient. Psychiatrists treat by reported symptoms. They are much more likely to treat the depression and anxiety of Lyme disease on a reported symptom basis.
ILADS (International Lyme and Associated Disease Society)
Doctors associated with ILADS seem to be much more open to understanding the treatment and the chronicity of some Lyme disease cases. Check out their site as they have a wealth of information on Lyme disease.
The Problem with Many Local Doctors
Since Connecticut is the home of Yale University it seems the mindset of many local physicians I that of the rheumatological point of view. Many family doctors don’t even try and diagnose Lyme disease and are dismissive if you don’t the bullet rash, however 20-40% of cases don’t’ present with a rash. I’ve seen patients trying to get help from their doctor only to be told in no uncertain terms they have other disease such as rheumatoid, MS and even strange unknown diseases. If your test is negative most physicians we’ve seen rule out the possibility of Lyme disease (Even though is misses 30-50% of the cases).
We knew on person doctors wanted to have electrodes implanted in their head for a tremor of unknown origin. The family doctor didn’t want to hear the facts when the person recovered with antibiotic treatment by a Lyme disease specialist. In fact the doctor concluded that it was all in the persons head. The same head he wanted electrodes planted in.
If you are in a hot Lyme area it is prudent to consider a Lyme diagnosis. However you may have a difficult time finding a doctor to consider the diagnosis. Check out for physicians associated with ILADS.
If you think about it, we feed livestock antibiotics to make them grow faster but someone with symptoms of a disease which is missed in nearly ½ the cases we are afraid to treat it with the same antibiotics. Patients mistreated by doctors and told it these symptoms are in their head feel like cattle and jealous that a cow can easily get antibiotics.