For chronic Lyme Disease patients, frustration, but new hope

For chronic Lyme Disease patients, frustration, but new hope

It was thirteen years ago. But Colleen Donovan remembers it well.

"I remember getting a tick bite and having a bullseye rash on my rib cage. It was classic, too."

Donovan got that bite while working at a summer camp for children in her native Rhode Island.  " I was out there every day so I was routinely pulling the ticks off me," Donovan said. "And I immediately went to a walk-in clinic.  And they tested me for Lyme Disease."

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She was prescribed a course of the antibiotic commonly used for Lyme Disease, doxycycline. But days later, she got a call from the clinic. "They told me to stop taking it when the test came back negative."

Donovan followed those instructions -- a decision that's haunted her ever since.

"I should have been retested. And I should have just had the full course of medication because had that been done I might have been one of those people who fully recovered after"

Instead, within three years, she began to develop a set of symptoms she now believes originated with that tick bite.

"I was tired. My joints were aching," Donovan recalled. "And it would be different joints. First it was my left knee. And I thought I must have injured it. And then it was my other knee on the other side. And then my elbows would hurt. And then it would go away."

Doctors refer to Lyme disease symptoms that linger or reappear months or years after a treated acute infection as Post-Treatment Lyme Disease Syndrome, or PTLDS.

"That's a way to characterize that, even after appropriate treatment, people can still present with symptoms," said Dr. David Crandell of the Dean Center for Tick-Borne Illness at Spaulding Rehabilitation Hospital in Boston. "The major groupings of symptoms usually are problems with pain, muscle aches, joint aches, severe debilitating fatigue."

Dr. Crandell says the most challenging symptom of PTLDS is mental confusion. "The term that most people use is brain fog," he said.

Donovan developed 'brain fog' to such an extent that even simple math became difficult.

"I got lost driving around. I missed turns I'd taken my whole life."

Eventually, her symptoms got so bad Donovan was forced to leave the workforce and abandon plans to attend graduate school.

At thirty-six, she is living with her parents in Bristol, Rhode Island. She's seen numerous specialists for her symptoms, but no one has been able to provide any long-term relief.

Colleen Donovan is far from alone, said Mary Beth Pfeiffer, a former investigative reporter and author of the new book Lyme: The First Epidemic of Climate Change.

"Ten to 20 percent of people with Lyme Disease will continue to have symptoms a year or more after treatment," she said.

Pfeiffer found many of these patients have trouble getting medical care for their symptoms because what they're experiencing goes against the grain of what's medically acceptable for Lyme Disease -- not to mention what insurance companies may be willing to cover.

"Medicine put out this view of Lyme Disease as easy to treat... readily curable... with antibiotics. That did not work for everyone."

Pfeiffer said often patients with continuing Lyme symptoms are dismissed as having psychosomatic maladies -- when there's actually emerging science showing the Lyme Disease bacterium -- or spirochete -- can survive antibiotic treatment.

"In mice, in monkeys... in test tube studies we are finding that when we expose the spirochete to the antibiotics that doctors use every day for Lyme Disease some of those spirochetes survive," Pfeiffer said.

"This is where the controversy lies, says Dr. Kim Lewis, a Lyme Disease researcher at Northeastern University in Boston.

"It is not possible to isolate the pathogen from our patients suffering from PTLDS. Which would indicate the pathogen is gone. (But it is) very difficult to prove a negative. That something is not there. So it is conceivable that some form of pathogen remains in the body."

Dr. Lewis and his team are working on developing new treatments for Lyme Disease under a $1.5 million grant.

"We now have a compound we've identified that is highly selective in killing Borrelia (the Lyme Disease bacterium) and not other bacteria," Lewis said. "It is also available orally and we see no toxicity. It clears the infection very nicely in mice."

That compound is several years away from use in humans.

But Dr. Lewis says human trials of a potential treatment for PTLDS are on the horizon. That treatment is based on the observation that 'chronic' Lyme symptoms bear a resemblance to some auto-immune diseases that arise because of a bacterial  imbalance in the gut, or what is known as the 'microbiome.'

Ironically, those imbalances in Lyme patients may be caused by the very drug that cures the disease in most people, Lewis said: doxycycline.

"Broad spectrum antibiotics like doxycycline that are used to treat acute Lyme Disease of course they wreck the microbiome and they paradoxically can be a contributing factor to devloping PTLDS," Lewis said. That's because they do not selectively kill Lyme Disease bacteria.

The potential treatment may be, for some, a tough capsule to swallow: It's a treatment known as FMT, which stands for Fecal Matter Transplant.

"Healthy dnors provide fecal matter. That is put into pills so it becomes properly palatable," Lewis said. "And you just take it like any other pills.

Colleen Donovan finally got another Lyme Disease test in 2014, after she found a doctor in New Jersey willing to treat patients who complained of chronic Lyme Disease symptoms. It came back positive.

"I also tested positive for babesiosis," she said. "It was a relief and it was also upsetting. And it was also do I believe this. Because there's still that lingering doubt and skepticism that it just can't possibly be."

Donovan wound up going on a three-month course of intravenous antibiotics. For a year she felt great. Some in the Chronic Lyme community have suggested she didn't stay on the antibiotics long enough to effect a complete cure. But she was reluctant to continue taking them.

"If I can stay semi-functional, then I would prefer to be off antibiotics, unless better research and antibiotic treatments came out with studies to back up their success," Donovan says. "It's a very difficult decision."

Donovan does wish the medical community would take the complaints of long-term Lyme Disease sufferers more seriously. She recalls one moment when her primary care doctor accused her of wanting to be sick.

"The symptoms are real to you. And you're going around just asking people for help. And nobody wants to help you. And that was the hardest part for me," she said."