Twenty-four hours later, he was dead. The diagnosis: Lyme disease. It attacked his heart.
Fast forward to the present.
I’m catching up on my many unread magazines, Prevention magazine for today, and come across an excellent article on Lyme disease. I think of Harvey and read it with interest. Turns out, one of the premier researchers on Lyme and other pathogens like tuberculosis and E. coli, Paul Keim, works at TGen at their Northern Arizona University campus in Flagstaff. That’s right in my backyard, and also where my son lives and will be finishing college.
The bacterium that causes Lyme disease occurs naturally in mice squirrels and other small animals. The infection spreads as the black-legged tick –about the size of a speck of dirt before engorged with blood—feed on animals and then bite humans.
A bright red bull’s eye rash around the bite warrants an immediate trip to your doctor—and take the offending tick with you. If diagnosed and treated quickly with antibiotics, most people recover fully and quickly from Lyme, according to the CDC.
Symptoms can masquerade as those of the flu, mononucleosis, inflamed and achy joints, migraines, or be hardly noticeable at all. Receiving antibiotics at this point—even for months at a time—may not help.
Treating an Elusive Bacteria
In the meantime, one post on my Facebook page about my research revealed that I know A LOT of people who have suffered from Lyme disease, some of them for decades.
“The harder you hit it with antibiotics, the stealthier it becomes,” says Julie Grano, who contracted Lyme 15 years ago. Her doctor referred Julie to the Infectious Disease Center (IDC) when the disease invaded her brain. She had been on intravenous antibiotics for two months. She reported that she actually felt better when she would finish a course of antibiotics, only to feel awful again and be put back on meds.
Her IDC doctor explained how, while the disease was under attack from antibiotics and losing, it would form sacs around itself and retreat to wait out the drug treatment, only to emerge and strengthen when the treatment was over.
“They did a CAT scan of my brain while I was suffering one of my migraines,” she says, “and they could actually see the sacs attached to my brain.”
Recent studies of confirmed Lyme patients report that, since many people are not treated early for Lyme, between 28 to 50% of them continue to suffer from fatigue, muscle and joint pain, and “brain fog” after completing standard treatment.
“I got bit in New York,” says Kathleen Groger, a 22-year Lyme sufferer. “I ended up researching Lyme myself after I fell apart from all my strange, unexplained symptoms. Then I got a doctor trained in Lyme and was on antibiotics and other drugs for a year and a half.” It wasn’t until her mother sent her a picture of her dog, and a portion of her leg, with a bulls-eye rash on it, that she remembered the tick bite. While she cannot definitively link her symptoms to Lyme disease, she still has unexplained neuropathy and joint inflammation.
While a vaccination is available to prevent Lyme disease in dogs, there is no prevention on the near horizon for people.
Scientists recognize that since antibiotics are currently the only approved therapy for Lyme disease, and antibiotics are only effective during the early stages of the disease, successful treatment hinges on developing a replacement for the inaccurate diagnostic tests doctors currently rely on.
Right now genetic sequencing is the most promising possibility.
She reached out to Paul Keim at Translational Genomics Research Institute (TGen) in Flagstaff.
Keim, Regent’s Professor of Biology at Northern Arizona University, is kind of a rock star in the infectious disease research and bioterrorism world. Following the 2001 anthrax attacks on the East Coast, Keim and his research played a crucial role in aiding the United States military and intelligence community in their investigations. He conducted genomic analysis on the anthrax inside the contaminated letters that were sent, and tracked it back to a single flax of anthrax spores from a lab in Maryland.
And when heroin users in Scotland contracted anthrax infections, Keim again traced the source of the anthrax contamination—this time to drug smuggling routes in the Middle East. Keim concluded that the anthrax-tainted heroin may have been cut with bonemeal that contained anthrax spores, or wrapped in contaminated animal hides during the drug’s journey to Scotland.
In his other hat, as Director of the Pathogen Genomics Division for TGen North, Keim and his team have been working on developing a test for Lyme disease. The results are promising. The test works by targeting and amplifying specific regions of the Lyme bacteria’s DNA, as well as genes from other types of tick-borne microbes. Scientists sequence the amplified DNA and determine which bacterial species are present by searching from that specific DNA. The test will be able to detect multiple strains of Lyme bacteria, plus all major co-infections and non-Lyme causes of disease like influenza and staph.
“Unlike current Lyme diagnostics, which depend on the immune system to develop antibodies against the bacteria, the new test will be able to detect even small remnants of Borrelia in the blood, and maybe in tissue too,” says Crawford.
If continued funding and clinical trials are successful, the test could be available within the year.
I’ve contacted Dr. Keim and TGen to get any updates on their testing results, and will keep you posted on their reply.