What you need to know about ticks and Lyme disease

Pennsylvania has more cases of Lyme disease than any other state. In 2018, 10,208 cases were reported in Pennsylvania — but the CDC estimates the true count is about 10 times the reported number. This means that Pennsylvania could have around 100,000 cases a year.

The Pennsylvania Senate, realizing the urgency of this issue, passed legislation last month requiring schools to inform parents when a tick is found on a student. With May being National Lyme Disease Awareness Month, more strategies are needed to raise awareness about this underrecognized but significant illness.

Named for its discovery in the town of Lyme, Conn., the illness is caused by a bacteria transmitted via tick bite. The disease can cause a range of symptoms, including fever, headache, fatigue, and a rash. If left untreated, Lyme disease can lead to more severe symptoms, such as joint pain, heart palpitations or failure, and brain or nerve problems.

Lyme disease presents two major challenges to doctors. First, it is hard to diagnose — the symptoms can mimic other illnesses, and most people with Lyme disease do not ever recall having a tick bite. Not everyone infected with Lyme develops the classic bull’s-eye rash that we learned about in medical school. Sometimes there may be no rash, or what looks like a spider bite or common skin infection. When Lyme is misdiagnosed, patients can suffer complications from delayed treatment.

The earlier it is identified, the easier it is to treat. Visiting a doctor who could order the necessary tests and prescribe you antibiotics, if needed according to medical guidelines, is important.

The second, and less well-known, issue is that while most people recover from Lyme disease with antibiotics, some may develop chronic symptoms that last for months or even years. This condition is known as post-treatment Lyme disease syndrome — also known as chronic Lyme disease — which can develop in 10% to 20% of treated patients, according to an article in the New England Journal of Medicine.

In my clinical practice, I see many patients for whom Lyme disease has become a chronic, persistent condition that contributes to multiple disabling symptoms and even autoimmune disease, my area of research. The reality is that, for some, Lyme disease can be a serious, debilitating illness that requires an integrative and comprehensive treatment approach.

These patients are falling through the cracks in our medical system. We are not acknowledging that this is a valid condition. While we in medicine are debating chronic Lyme disease, patients are suffering. There are heartbreaking reports of patients struggling to get the care they need while having their symptoms dismissed by their doctors.

The International Lyme and Associated Diseases Society is a professional organization that trains medical professionals to treat chronic Lyme disease, which may require extended treatment beyond conventional guidelines. We need to start following its guidelines and taking people who present with chronic Lyme disease seriously, in order to get patients the care they need.

If you develop any symptoms of Lyme disease, such as fever, headache, or unexplained rash — even if it does not look like a bull’s-eye — seek medical attention promptly. Know that the classic rash is rare. If you feel like you might have chronic Lyme disease, seek out a doctor trained by the International Lyme and Associated Diseases Society in more comprehensive treatment approaches beyond the standard, conventional guidelines.

A challenge with Lyme disease in Pennsylvania (and the entire United States) is the lack of awareness surrounding all aspects of the disease. Moderna recently announced that it is developing a vaccine for Lyme — underlining the fact that cases are starting to spread globally. Many people may not realize how prevalent the disease is, or that post-treatment Lyme can cause chronic, disabling symptoms. To address this issue, more education and outreach are urgently needed.

Akil Palanisamy is a Harvard-trained physician and author of “The TIGER Protocol: An Integrative, 5-Step Program to Treat and Heal Your Autoimmunity.”