May is Lyme Disease Awareness Month
by Phyllis Mervine
May is the peak season in Northern California for the tiny but dangerous nymphal tick. As Mendocino County residents spend more time outdoors, millions of nymphs are hatching out in the leaf litter and they are hungry. Most will find a mouse or squirrel for their blood meal; some will latch onto an unlucky human. About seven percent are infected with the corkscrew bacteria that cause Lyme disease. Some also carry other disease-causing bacteria. The longer they are attached, the more likely they are to transmit infection to their host.
Ukiah resident Phyllis Mervine didn’t notice the bite in 1977 but she got sick soon after. She says it took her ten years to get diagnosed. She founded the nonprofit LymeDisease.org and has been the president for 25 years. She is heading to Providence, RI, to attend a two-day Lyme conference on May 3-4 where the topics for discussion suggest that Lyme is serious. A medical epidemiologist from the Centers for Disease Control (CDC) will talk about a new study on sudden cardiac arrest associated with Lyme carditis. A professor from Tufts University will share his study where he let ticks feed on patients who had been treated for Lyme disease. Two speakers will discuss Lyme depression and suicide.
LymeDisease.org has just published the largest survey ever conducted on people with Lyme disease, Mervine said. They found that chronic Lyme disease is associated with a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis.
The survey also shows that patients with chronic Lyme disease have high disability and unemployment rates. Over forty percent of patients with chronic Lyme disease reported that they currently are unable to work because of Lyme disease and 24% of patients report that they have received disability at some point in their illness. This compares with 6% of the US population who are unable to work due to illness.
“Chronic Lyme patients are five times more likely to visit doctors and twice as likely to be seen in emergency rooms as the general population,” Mervine added.
Last year the CDC increased its estimate of the number of new cases to 300,000 annually, saying the true numbers were ten times greater than the reported cases. Mervine believes there may be 50 times more.
“LymeDisease.org surveys show that patients go from doctor to doctor trying to get diagnosed. It often takes years,” she said. “Even if the doctors order a test there is a 50% chance it will be a false negative. Then few doctors complete the paperwork the health department needs to count a case. Plus many patients tell us their doctor said, “There’s no Lyme here.”
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Early symptoms of Lyme disease include a flu-like illness with fever, headache, swollen glands and aching muscles, often occurring in summer. Some people – but not all – develop a characteristic rash around the bite area. People may be misdiagnosed with chronic fatigue, fibromyalgia, MS, or even mental illness. Without proper treatment, they become chronic and disabled.
Prevention is key to avoiding Lyme disease.
- Use sprays containing permethrin on clothing and DEET on skin.
- Avoid tick-infested areas and check yourself frequently for tiny ticks for several days following exposure.
- Remove any biting ticks promptly, using tweezers or a special tick-remover.
- Do not twist, squeeze or mutilate the tick. Try not to get any tick fluids on your bare skin.
- Disinfect the bite area and wash your hands.
- Save the tick in a small vial or plastic bag in case you want to test it.
- Watch the area for any signs of a developing rash.
- See a doctor knowledgeable about Lyme disease if you experience a rash or flu-like illness after exposure to ticks.
For more information visit www.LymeDisease.org.
Six Lyme Myths
Lyme disease is the fastest growing vector-borne disease in the U.S., with almost as many cases every year as AIDS. You and your loved ones may be at risk. There are many common misconceptions. Below we offer a few facts to correct the myths.
MYTH 1: Lyme is an East Coast/Midwest disease.
- FACT: Lyme disease has been reported in all 50 states and on every continent. Migrating birds spread it widely. In 2012, the latest year for which official figures are available, more than 30,000 cases were reported to the Centers for Disease Control, but the actual number of cases may be 50 times greater.
MYTH 2: Lyme is hard to catch.
- FACT: The poppy seed-sized immature tick, or nymph, is so small that you may not see it or feel the bite. The longer a tick feeds, the greater the risk. Nymphs live in leaf litter in backyards, parks, fields and forests, feeding on wildlife like squirrels, mice and birds. Tick infection rates vary from place to place; up to 99% are infected in some areas.
MYTH 3: Lyme is easy to diagnose.
- FACT: The classic bull’s-eye rash occurs in less than one patient in ten. Many doctors order tests so insensitive they miss half the cases. A negative test should not be used to rule out this infection – but it often is. A LymeDisease.org survey found that the average patient waited over four years, seeing multiple doctors, before being diagnosed.
MYTH 4: Lyme is easy to cure.
- FACT: Early Lyme disease is easy to cure with short-term treatment. Unfortunately many people are not treated early and about half of these fail short-term treatment. Since scientific evidence proves the disease persists in spite of treatment, some doctors to prescribe long-term antibiotics. Patients often improve while on antibiotics and relapse when antibiotics are withdrawn. They may stabilize on “maintenance” therapy.
MYTH 5: Lyme symptoms are like the normal aches and pains of daily living.
- FACT: A LymeDisease.org survey found Lyme is associated with a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis. It mainly affects muscles and joints, the brain, nerves, and heart. It can mimic chronic fatigue syndrome, fibromyalgia, lupus, MS, Parkinson's, ALS, ADHD, and mental illness. It can cause severe depression and has resulted in suicides. The pain can be as bad as post-surgical pain. Over 40% of LymeDisease.org’s survey respondents are unable to work and 24% qualify for disability.
MYTH 6: My regular doctor will take care of me.
- FACT: Most of the people responding to the LymeDisaease.org survey reported difficulty finding a knowledgeable physician to treat them. More than half traveled over 100 miles or out of state to obtain care. Almost half also have at least one tick-borne co-infection, such as Babesia and Bartonella. This makes the illness more complicated to diagnose and treat. Multiple infections suppress the immune system, making it even harder to treat the Lyme disease. Most doctors know even less about these other infections.