Here’s why I love being a writer. I get to take snippets of information and weave them together into a cohesive story, and then share it with you. Sometimes the story is a fiction novel. Sometimes, like today, it’s factual.
Before I get to this posting of researched facts, let me just say, the human brain is an amazing organ. As testimony, I’d like to give you the circuitous route mine took to get around to writing about Lyme disease.
In the 1980s I worked in the advertising department at the headquarters of a national real estate company. There, at ERA Real Estate, I worked for one of my favorite bosses in my career. His name was Harvey. He was soft-spoken, had a wicked sense of humor, and honestly cared about the people he hired. So when I reported to work one Monday to find Harvey had been hospitalized over the weekend, I was concerned. He’d been camping with his wife and found a tick embedded in his arm when they got home.
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.
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.
I’ll talk more about Keim’s research, but first, let’s talk about Lyme disease itself.
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.
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.
Lyme disease is the most commonly reported tick-borne illness in the United States, and the incidence is growing in number and geographic area. More than 38,000 cases are reported a year, but the unreported count is probably closer to 300,000.
Fourteen states in the East and Upper Midwest report the majority of cases: Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Jersey, New York, New Hampshire, Pennsylvania, Rhode Island, Virginia, Vermont, and Wisconsin.
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.
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.
But only somewhere between 40-70% of the people infected notice and/or receive treatment for the rash, and treating the disease after the initial symptoms is much, much trickier.
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.
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.
The reason? As Julie Grano knows, Borrelia is no ordinary bacterium. In the same way a tick burrow into the skin, the corkscrew-shaped Borrelia worms its way into tissues that have few circulating antibodies, where it’s harder for antibiotics to reach. In addition, it has the ability to hijack the immune system while simultaneously wreaking havoc on every major organ system.
“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.
Better Diagnosis
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.
“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.
Better Diagnosis
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.
A Lyme activist named Tammy Crawford, who founded the patient advocacy organization Focus on Lyme after her daughter’s infection, was responsible for convincing researchers that the technology could be useful in diagnosing Lyme.
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.
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.
Keim has applied similar genetic tracking techniques to other cases. In Haiti, months after a devastating 2010 earthquake, a cholera outbreak killed 6,000 people. Keim and his team conducted DNA analysis of the cholera strain found in Haiti, and tracked it Nepalese U.N. peacekeepers in Haiti to assist with earthquake relief efforts.
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.
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.
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