Many doctors still resist Lyme diagnosis
DEAR DR. GOTT: A while ago, you responded to a 16-year-old girl who suffered with daily headaches. She also mentioned nausea, hearing and vision disturbances, poor balance, tingling sensations, intense muscle twitching and brain fog. This could have described my 15-year-old daughter, who was finally diagnosed, after four years, with late-stage Lyme disease.
I would encourage this young woman to try to find a sympathetic doctor who is willing to consider Lyme and its co-infections. She should not spend her limited money on blood tests, which are not very good for most tick-borne diseases (although many doctors do not seem to be aware of this). It would be worth trying a course of antibiotics if the doctor thinks Lyme is even a possibility based on her symptoms. If she feels worse after starting treatment, that can be a sign that it’s the right diagnosis and that she is experiencing a Herxheimer reaction as the bacteria die off. Eventually, she will get better, but only if she and her doctor keep up with treatment, possibly for many months.
If she does have Lyme disease, she will probably need to stand up for herself against a doctor who thinks she is faking her symptoms or that Lyme is easily treated with a short course of antibiotics (which is true only if it is caught early). A doctor with an open mind and a willingness to try different antibiotics can put her on the road to recovery.
Our story is like so many others. Our daughter had all the early, acute symptoms when we took her to the doctor shortly after a trip to an endemic area, yet the doctor rejected a Lyme diagnosis because we didn’t recall a tick bite or rash. She could have been treated easily, cheaply and relatively safely with a few weeks of doxycycline. Instead, she went from being an active, healthy girl to someone suffering through years of pain, fatigue and cognitive problems and barely getting through half a day of school, not to mention running up high medical expenses over years of exploring for a cause.
Our daughter was eventually told that she had all sorts of things, each of which explained a single symptom, but many others went completely unexplained. We would be sent home time and time again with “we didn’t find anything,” and there was no attempt to put the pieces together.
Still, the idea of Lyme was viewed with skepticism or soundly rejected by many doctors, even in the face of overwhelming symptoms and with no alternative theories. Our daughter had to face the disbelief of doctor after doctor, culminating with suggestions that she get psychological help. Even those who were sympathetic to the idea that it might be Lyme had little idea how to treat it when she didn’t recover in one month. We finally put the pieces together ourselves. We located a Lyme-literate doctor outside our highly regarded university-based medical system and paid out of pocket. After months of treatment she is, at last, getting better. She is now back at school nearly full time, although far from her former self. The doctor says to expect it to take about two years to recover.
We have since learned that Lyme is often undiagnosed, attributed to psychological causes or misdiagnosed as other conditions that rely on a clinical diagnosis but seem to be better accepted in the medical community. Chronic fatigue syndrome, fibromyalgia, Parkinson’s disease, ALS, MS, lupus and many others are commonly used to explain the symptoms. I wonder how many Lyme patients there are who have no idea what is happening to them?
Lyme was a life-altering illness for our daughter and many others. Having to fight for legitimacy in the medical community makes the journey even harder. Your comments on this growing and under-recognized disease would be welcomed.
DEAR READER: I have had to trim your letter down owing to space restrictions, but I felt it was vital to print as much of it as possible.
I live in New England, where Lyme is a recognized potential infection. Many cases are seen and treated every late spring through mid-fall during peak tick seasons.
I was aware that a few years ago Lyme was still being rejected by some physicians in other areas, but I thought that as more cases were found outside of New England, they would come to accept that Lyme disease has spread to nearly every part of the United States. It seems I was mistaken in that assumption. I applaud your insistence in getting your daughter help but am disappointed and discouraged that so many dismissed her symptoms being the result of Lyme.
I recommend anyone interested in learning more about Lyme disease and other tick-borne disorders should visit the Centers for Disease Control Web site at www.CDC.gov. There is even a map of reported Lyme cases that shows at least one case in nearly every U.S. state, and probably reflects an underestimate, as it represents only the diagnosed and reported cases.