Treatment regimen can make the difference
It was bad enough that Mary Appleton Jaycox contracted Lyme disease. Then, her husband William got it too while she was battling a recurrence of the tick-borne disease.
Jaycox contracted Lyme disease 17 years ago – along with Babesiosis, Ehrlichiosis and Rickettsia, which causes Rocky Mountain spotted fever – when she was a 34-year-old mother of three young children.
The San Marco resident found the tick on a trip to Africa, but because it was within two days’ travel from Florida, she believes there’s a strong chance it traveled with her. It took three months of illness before the diagnosis was confirmed but, according to Jaycox, that was a fast track because she was very, very ill.
“I could have died at some point; it was very acute,” she related. “I took boatloads of antibiotics…two weeks’ worth through a PICC (peripherally inserted central catheter) line every day.”
Once considered a rare disease based on the number of reported cases in the United States per year, Lyme is transmitted by the bite of a tick infected with the bacterium Borrelia burgdorferi. That purported rarity has traditionally determined the type and intensity of treatment, usually resulting in less than successful cure rates.
Recently the Center for Disease Control reported that Lyme disease has grown to epidemic proportions with more than 300,000 new cases annually. For Jaycox, that’s not enough.
“It’s underreported because most states don’t have a structure for reporting it,” she said. “There’s been very little publicity about it, so sufferers all fall through the cracks. It’s a lot more prevalent than people realize.”
After two very aggressive years of antibiotics, Jaycox had 10 years of good health and thought she was cured. Unfortunately, when her sister died unexpectedly four years ago her immune system “took a nose dive and it was suddenly back as big and bold as ever.”
The Borrelia burgdorferi bacteria burrows into the body’s tissues and can hide for years, and as long as one’s immune system is in good shape most people can deal with it, she explained.
“I spend half my life charging up for the other half. I have to pick and choose what I’m going to do, where I’m going to go,” Jaycox said. “Some nights I wonder if I’m going to wake up in the morning and the most frightening thing about it is that there’s nobody out there who knows how to help me. Even my Lyme doctor really doesn’t know how to help me.”
In spite of the toll the disease takes on her health, Jaycox hasn’t let that stop her advocating for greater awareness, better testing, improved treatment guidelines and greater understanding from the medical community.
She is on the board of the Jacksonville-based Florida Lyme Association, dedicated to education, awareness, and research; it is one of the most active groups in the nation.
Because Lyme disease was once believed to be a problem limited to north of the Mason-Dixon Line, stated Jaycox, not much was understood about its severity and research funding was next to nothing.
Lyme disease research only received $21 million in funding in 2014 by the National Institute of Health. Compare that to more than $3 billion for HIV, which affects one-sixth the number of people who contract Lyme disease, and you can understand why Jaycox and others are frustrated.
“It knows no boundaries – age, gender or geography,” said Jaycox. “Testing is extremely poor. There are only about three labs in the whole country that do the testing, and it’s not reliable.”
For what has become the fastest growing disease in the country, the guidelines for treatment are inadequate. The International Lyme and Associated Diseases Society (ILADS) is attempting to change those guidelines produced by the Infectious Diseases Society of America (IDSA).
“It is far more prevalent than the medical community acknowledges and it’s only getting worse, with few doctors able to treat this complex issue,” said Jaycox.
There’s good news and bad news. Lyme disease victims don’t build an immunity to it; they can get infected over and over. “But it’s treatable if diagnosed and treated immediately,” Jaycox said, “as long as you are firm with your doctors about the dosage and length of treatment.”
Although Jaycox and her family are hyper-vigilant about checking themselves and their pets for ticks, ironically, her husband got bit by a tick three years ago here in Jacksonville.
“He got the bulls-eye rash (which I had not), managed to get a double dose of antibiotics for a month instead of the normal 10-day course and he is cured,” she said.
Though she fears there will be no cure in her lifetime, Jaycox perseveres. To raise awareness for Lyme disease, she spoke at a recent meeting of the Rotary Club of South Jacksonville where she challenged the members to Take a Bite Out of Lyme and then donate to the cause. Recently celebrity Avril Lavigne “came out” as a sufferer of Lyme and Jaycox noted that Justin Timberlake has joined the awareness campaign.
To support the effort or for more information, visit lymediseasechallenge.org.