The secrets of chronic Lyme disease

This story was originally featured on Outdoor Life.

My living nightmare started in February 2019, at which point my 2-year battle with Lyme disease began. I didn’t even see the tiny, poppy-sized tick that got me. And I’ve never seen a bullseye rash. It was six months before I was diagnosed. By then, the microscopic spirochetes that caused the disease had worked their way into my joints. A simple two week course of antibiotics would not solve my problem. I didn’t know then, but I’d gotten into a fight where constant joint pain, overwhelming insomnia, and a never-ending flu-like brain fog haunted my every move.

Today I’m older and a little bit wiser. After countless prescriptions and doctor’s appointments and interviews with some of the best Lyme disease researchers in the field, I know a lot more about Lyme disease and ticks than I ever wanted to. I am also largely symptom-free.

But it wasn’t easy. The good news for you is that I can pass this years of knowledge on to you in just a few minutes so that you can arm yourself against this harmful disease.

Listen to this story from the first season of The Outdoor Life Podcast:

The problem with detecting Lyme disease

The real problem with Lyme isn’t that it’s difficult to cure. It isn’t – when you know you have it in the first month. In this case, a quick treatment with the right antibiotics is enough to cure you permanently. Or at least until you get another tick bite. The problem is what if you don’t catch it in time.

“Chronic symptom manifestations usually occur when there is a delay in diagnosis or treatment,” says Shannon Delaney, a Lyme researcher at Colombia University.

These chronic symptoms show up in what is known as post-treatment Lyme borreliosis syndrome (PTLDS). They occur in around 20 to 30 percent of people with Lyme disease, which makes Lyme a painful elephant in the outdoor lover’s living room. Many victims turn to Lyme specialists or “Lyme-trained doctors”. Others suffer in silence. Still others may not even know they have it. There is also no test to prove that you are cured. So if you get the “cure” but are still sick, what then? The answer is a deep, broad trail of suffering for millions.

A hidden epidemic

About 35,000 new cases of Lyme disease are reported each year. Still, the CDC estimates that 476,000 people are diagnosed and treated each year. That’s nearly 5 million infected Americans in the last decade alone.

The massive difference between these numbers is due to a hiccup in the reporting process. The CDC only counts a new Lyme disease case if the attending physician fills out a special CDC report. Doctors are busy and often don’t take that extra step. However, there may be more cases than we know as many Lyme disease patients may go undiagnosed at all.

According to a nonprofit called the Global Lyme Alliance, the first test most doctors use for Lyme, called the ELISA test, has a 50 percent false-negative rate.

Delaney agrees that current testing methods leave something to be desired. “It’s pretty widely accepted that the primary tests for Lyme disease are insensitive,” she says. After all, the tests do not look for the organism in the victim’s body. They look for the body’s immune response, which can be a moving target.

Eva Sapi of New Haven University’s Lyme Research Center goes even further. “There can be up to 200 Lyme disease strains out there,” she says. “Still, the tests we have today only work for a small number of these species.”

But it all gets more complicated when Lyme researchers and medical professionals don’t necessarily agree.

“There may be Borrelia species that we haven’t identified,” says Christina Nelson, a doctor at the CDC, noting that some new species have been discovered in recent years. “But you’d expect these to show up in standard Lyme antibody tests because different types of Borrelia often cross-react in these tests.” She also argues that the tests are not insensitive to later stages of the infection. “The vast majority of people who have spread Lyme disease develop an antibody response that shows up in standard tests.”

One issue with the tests that everyone agrees on is timing. Marcelos Campos, chief medical officer at Atrius Health in Boston, who also teaches at Tufts and Harvard universities, says when the test is done is important.

“So if someone is bitten by a tick, for example, and they test five or seven days later, it will most likely be negative because the test is looking for a reaction that has not yet started,” says Campos. A testing lab called IgeneX is trying to solve the testing problem with a milder standard. So far, the CDC does not recognize IgeneX’s testing panel, although many doctors are currently relying on it.

There is no vaccine for Lyme disease

About 20 years ago there was a simple, safe, and effective vaccine against Lyme disease. Sam Telford, director of the New England Regional Biosafety Laboratory at Tufts University, helped develop it in the early 1990s. “Unfortunately,” he says, “it’s now on a shelf.”

Telford and his team developed a unique method in which the vaccinated animal’s blood got into the tick and killed the bacteria before they could get into the body. SmithKline Beecham, now GlaxoSmithKline, selected the vaccine as an option and tested it in three-phase clinical trials involving 8,000 subjects. The FDA cleared it for sale in 1998, but the company withdrew it in 2002 due to legal proceedings.

“Lyme disease activists said, oh well, that vaccine gave us Lyme disease or arthritis,” Telford says. “You filed a class action lawsuit against SmithKline for $ 1 billion.”

The CDC said there was no medical basis for the lawsuit and she was kicked out of court. Nevertheless, the company got cold feet. “They took the vaccine off the market and it has been in their freezer ever since.”

Meanwhile, a veterinary vaccine manufacturer named Meriel has packaged the vaccine for use on dogs. “It’s essentially the same thing that human clinical trials have gone through,” Telford says. “So we can vaccinate dogs with a safe and effective vaccine against Lyme disease, but we can’t do it for humans.”

However, there is hope on the horizon as Pfizer has brought a new Lyme vaccine into Phase II clinical trials. Even so, it could take five years or more for this new vaccine to hit the market.

Read the rest of the story over at Outdoor Life.

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