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La Jollans hoping to raise awareness about ‘The Great Imitator,’ Lyme disease

These black-legged ticks, Ixodes scapularis, also referred to as I. dammini, are known to transmit Lyme disease.
These black-legged ticks, Ixodes scapularis, also referred to as I. dammini, are known to transmit Lyme disease.
(CDC / Michael Levin)

The Lyme disease awareness month of May might have come and gone, but for the local families affected by Lyme disease, the hope is that there would be consciousness of it from June to April as well.

Lyme disease is named after a small town in Connecticut, where the full spectrum of illness was first described in 1975, according to the Centers for Disease Control and Prevention, and is the most common vector-borne disease in the United States. It is transmitted to humans through the bite of infected black-legged ticks.

Lyme disease is most frequently reported from the upper midwestern and northeastern United States. But the CDC has reported cases in Northern California, Oregon and Washington.

Sometimes referred to as “The Great Imitator” because symptoms can vary and mimic other diseases, typical symptoms include fever, headache, fatigue and a characteristic “bull’s-eye”-shaped skin rash that can last weeks to years.

But some symptoms are all but typical, making it difficult to diagnose. La Jolla resident Sharon Wampler’s symptoms included bleeding gums, headaches, joint pain and cognitive difficulties.

“It was actually my dentist who recommended I see a doctor because I had bleeding gums,” she said. “They checked me for rheumatoid arthritis and lupus and everything looked good, so they let me go. I went back to a doctor several months later because I was still not feeling well, and no one could figure anything else.”

After a colleague recommended that Wampler be checked for Lyme disease, she recalled being bitten by a tick in Germany. “I didn’t get the rash, so I didn’t think about it,” Wampler said. “I got tested and it came back positive.”

With Lyme disease, Wampler noted, “if you are treated immediately, it’s a better outcome. The bacteria can burrow into the joints and into the nervous system, and it can be harder to treat if not treated right away. There can be long-term issues with the heart ... or nervous system.”

Because she was not treated right away, her symptoms carried on for years.

And she’s not the only one.

Mark and Kaitlyn Guay moved to La Jolla from the East Coast four years ago “after a very long journey with Lyme disease” for Kaitlyn.

“For some people, it can be a six-week illness that is awful, but recoverable with antibiotics,” Mark Guay said. For others, “the symptoms last for a long time and there are other illnesses that can come with it over years. A lot of people don’t understand that it’s a range in which people can react and the symptoms they have.”

People often dismiss the seriousness of Lyme disease, he said, and it wasn’t until Kaitlyn was in a wheelchair that “people started treating her with compassion.”

He called Lyme disease an “invisible illness,” as people are often unaware of it and there aren’t as many physical changes as with other ailments.

“The analogy I often make is thankfully we have done a fantastic job understanding someone that has cancer. Immediately sympathy is provided, both in the medical community and the local community,” Mark said. “It’s such a well-known word because they recognize how serious it is.

“With Lyme disease that is not the case. My hope is people will have compassion for those that have it.”

Kaitlyn recovered from her bout with Lyme disease but still experiences symptoms.

“The journey has been so long, when something comes up we don’t know what’s a symptom of Lyme disease or something else. But we’re both optimistic about the future,” Mark said.

However, Sean Haney wasn’t as lucky. The postdoctoral student at the Scripps Institution of Oceanography in La Jolla died suddenly Jan. 1 of a cardiac problem known to occur in people with Lyme and other tick-borne diseases.

“A lot of it in retrospective is understanding,” said his father, David Haney. “He had issues that started showing up in 2014. We don’t know what they were, he didn’t know what they were. He had anxiety issues, and it appeared to him that they were set off by a hunger issue.” He went on to develop intestinal problems, a rash, pains throughout his body and weakness.

In researching tick-borne diseases like Lyme as a possible source, David Haney remembered that Sean was “an avid outdoorsman and often came across ticks.”

“I told him to remove the ticks and that he needed to go on antibiotics,” David said. “As a society, we don’t make a big enough deal that if you have ticks, they can kill you. Most people that get tick bites are OK, but some will get severely ill and some will die.”

On May 18, Councilman Joe LaCava adjourned the San Diego City Council meeting in Sean’s memory, saying he was “highly regarded for his scientific insight and adventurous spirit” and as “one to talk through challenging problems with.”

“Sean’s unexpected death came after a four-year battle with Lyme disease,” LaCava said. “Lyme is a complicated disease which is far more common on the West Coast than most recognize. Lack of awareness can delay diagnosis and treatment, causing serious danger and even death. Please practice preventive measures and know the signs. Sean’s passing shines a bright light on the lack of consensus and treatment options of Lyme disease on the West Coast. We must do better.”

To raise awareness, Wampler founded the San Diego Lyme Alliance in 2019.

“We don’t want people to be afraid, we want them to be aware,” she said. “It takes time for that shift in understanding. You have to have patience and persistence and hope more understanding comes from it, because people are suffering.”

She also partnered with U.S. Rep. Scott Peters (D-La Jolla), the first Congress member west of the Mississippi to join the Lyme Caucus, formed to identify federal funding for research.

To learn more about the San Diego Lyme Alliance, email sandiegolymealliance@gmail.com or visit its Facebook page, facebook.com/sandiegolymealliance.

To learn more about how to avoid getting Lyme disease and how to remove a tick, visit bayarealyme.org.