More research needed to understand Chronic Lyme disease

Posted at 10:59 PM, May 18, 2017
and last updated 2017-05-18 23:26:35-04

Imagine suffering from fatigue, headaches, and other debilitating symptoms. Lyme disease is one of the fastest growing infectious disease in the United States and for about ten percent of the patients who have been diagnosed, the symptoms extend beyond treatment.

Grace Beal’s symptoms started with bad headaches. She then had a tingling sensation in her arm.

“It kind of feels as though your foot is falling asleep but that sensation is never dismantled. It never went away,” Beal said.

It wasn’t until Grace woke up one morning and hit the floor that the 24-year-old knew she needed to get help.
Grace was diagnosed with Lyme disease last November.

She immediately started treatment—hoping to get some relief. But the treatment was unsuccessful.

"I went through about three courses of antibiotics and when I knew that wasn't working, I knew we had to start looking at other courses of treatment as well," Beal said. 

Grace is in the ten percent of patients with Lyme disease who continue to have symptoms after treatment.

ABC2 sat down with Dr. John Aucott, an Assistant Professor of Medicine and Director of the Johns Hopkins Lyme Disease Clinical Research Center.

“Ninety percent of people get diagnosed and treated and go on and live life the way they were before. But it’s this ten percent that develop chronic symptoms that we call post-treatment Lyme Disease Syndrome, and it’s what it says it is. It’s after treatment they have symptoms and it can be quite debilitating,” he said.

Even now, Grace says she still suffers from migraines, heart palpitations, hearing issues and fatigue.

And there’s no telling when these symptoms will go away.

“The ten percent of patients that don’t get better, sometimes the symptoms go away on their own in the first few months but sometimes they don’t. Some patients with Post-Treatment Lyme Disease Syndrome remain ill for years," Dr. Aucott said.

But for the outside world looking in, Grace, like many others battling the disease—look healthy.

Making it hard to understand what these patients are really going through.

“It's difficult for patients and also for physicians to get a handle on these chronic symptoms because they don’t have a good corelet with abnormal blood tests or CAT-scans or MRI’s in general testing for Post-Treatment Lyme Disease Syndrome is remarkable that there’s no evidence of organ damage or dysfunction," Dr. Aucott said.

He continues, “We know the patients are suffering. We know that they were healthy one day, got Lyme disease and then were treated and never got better. We know they’re not making it up it’s not just in their head.”

"The thing is I look so normal on the outside but I’m so drained on the inside," Beal said. 

Because there is no FDA approved therapy for Post-Treatment Lyme Disease Syndrome, many patients, like Grace, turn to alternative treatments.

Dr. Aucott sees this often.

“In patients with these chronic symptoms, tools are limited," he said.

He goes on to say, “Patients often supplement or compliment with other therapies and some of them make a lot of sense things that can help with pain management. Acupuncture and mindfulness therapy can be very helpful.”

“With my treatment now, it’s really all about symptom management and how to get me back to the most normal self I can be," Beal said. 

Beal is planning to step away from her job to focus full time on her treatment.

The CDC's website says:

"...Studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo. Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications. The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months to feel completely well."

For symptoms of Lyme disease click here

To learn more about the Johns Hopkins Lyme disease Clinical Research Center and the studies currently being done click here

Dr. Aucott says one of the studies being done is on the acute phase of Lyme disease. If you see a rash and think you may have it and want more information on their research, call 410-870-5963.