Diagnosis is difficult, and many people who get Lyme disease are often diagnosed as having a different medical condition instead.
Lyme disease doesn’t get the respect it deserves. In the U.S., 300,000 people every year are diagnosed with Lyme disease; that is six times more people than HIV/AIDs, and 1.5 times as many women as are diagnosed with breast cancer. That many cases is a large number, but experts also think it is lower than it ought to be. According to the Center for Disease Control (CDC) in 2013, the actual number was probably closer to three million.
Why the discrepancy? Diagnosis is difficult, and many people who get Lyme disease are often diagnosed as having a different medical condition instead. For example, it has been diagnosed as:
- Alzheimer’s disease
- Chronic fatigue
- Depression and other psychiatric illnesses
- Multiple sclerosis
That’s why one doctor who has treated more than 12,000 patients with Lyme disease, Dr. Richard Horowitz, has called it “the great imitator.” Dr. Horowitz is also the author of Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease.
Lyme disease can attack any organ of the body. For example, it can attack the heart, the brain, the nervous system, joints, and muscles. What are the symptoms if left untreated?
- Changes in the heartbeat
- Facial palsy
- Severe headaches
- Shooting pains
- Swelling in large joints
Infected pregnant women can pass Lyme disease on to their children. In rare cases it is responsible for causing a stillbirth. For 20 percent of those who have been diagnosed, even after being treated with antibiotics, there can also be more lasting problems such as:
- Arthritis in the joints
- Chronic fatigue
- Cognitive difficulties
- Sleep disturbance
Someone suffering from these problems after a bout of Lyme disease is considered to have what some call chronic Lyme disease and what others call post-treatment Lyme disease syndrome (PTLDS). Medical experts such as Dr. Horowitz think the symptoms are possibly caused by environmental factors and the body’s autoimmune response to the original Lyme infection, creating a more lasting autoimmune dysfunction.
Physicians have been aware of Lyme disease since the 1970s. Some 95 percent of the cases that are diagnosed are in just 14 states, with the majority of infections taking place in the Northeast part of the country and between Minnesota and Wisconsin along the Mississippi River. The people who are most likely to get Lyme disease are those who are frequently outside in places where they have a higher probability of being exposed, such as park rangers and firefighters.
Since so many patients with Lyme disease don’t get diagnosed correctly, it is important for people to understand Lyme disease and advocate for themselves if they think they have it.
Lyme disease is an infection caused by bacteria called Borrelia burgdorferi, which is shaped like a corkscrew. People are infected by the bacteria when an infected black-legged tick bites them. For the bacteria to be transferred, the tick has to be attached to its host for between 36 and 48 hours. The ticks that are most likely to infect people are nymphs.
One of the best ways to determine if an area puts you at risk for Lyme disease is to look at a canine map that shows the risk. Although Lyme disease is underreported for dogs as well as for humans, dogs do get routinely screened, and it makes sense that since so many people have dogs, a high incidence of infected ticks on dogs probably means a high incidence of infected ticks on people. You can find one at www.dogsandticks.com. Click on the Diseases in Your Area tab, enter your zip code, and the map will tell you the number of cases for four diseases, including Lyme disease.
Ticks can be found in wooded and grassy places, usually starting in May and continuing through the summer season. In warmer years, ticks have a longer feeding season. To protect yourself against ticks, you need to do the following:
- Cover your skin as much as possible.
- Use insect repellant containing DEET.
- Within the first two hours after being outside, bathe and inspect yourself (or have someone else inspect you) to make sure no ticks have attached themselves.
Finding a tick can be hard because most people get Lyme disease from a nymph the size of a poppy seed. The bite doesn’t hurt. If you don’t notice that it is there, it can continue to feed undisturbed for several days, all the while putting pathogens and the bacteria for Lyme disease into your body.
You can’t get vaccinated against Lyme disease, but your dog can. The company that is now GlaxoSmithKline licensed a vaccine in 1998, but pulled it after adverse short-term reactions. A biotechnology company in Europe, however, is currently working on a new vaccine with the hope that they can develop something better.
If an infected tick bites you and passes the infection on, you are likely to develop a rash that looks like a bull’s eye within the first 36 hours. It consists of a solid center surrounded by a ring, and it can be found as much as 80 percent of the time. The other symptoms (aches, chills, fever, and pains) develop in the weeks after that.
You should be alert for the possibility of Lyme disease, and make an appointment with your physician if you think you or anyone in your family might have it. Most Lyme disease infections can be cured by a ten-day course of antibiotics, but your physician can help you decide if the risks of using an antibiotic merit prescribing one for you in this particular case.