After years of living with pain, a West Greenwich resident has focused his attention on raising awareness of Lyme disease and finding a source of healing for himself.
Lyme is an infectious disease caused by a bacteria spread by ticks.
Daniel Lennon, who says he has been suffering from the disease for more than five years, said his life was upended since he first contracted the disease.
“I was healthy,” Lennon, a former Exeter-West Greenwich High School student, said on Tuesday. “I went to EWG, played varsity sports there, did well academically.”
He said it wasn’t until after graduating from the University of Rhode Island that he started having strange symptoms, which he’d never experienced in his life.
“I graduated from URI in 2012 and, suddenly, out of nowhere, I couldn’t get out of bed,” he continued. “I was just having a lot of joint pain, brain fog, I couldn’t really think. My short-term and long-term memory was shot.”
Lennon went to his primary care doctor, who told him that all testing, including a Lyme Disease test, had come back negative. This led him to see more than 20 specialists, all of whom couldn’t provide Lennon with an actual diagnosis beyond depression or chronic fatigue.
“I was told that I was negative for Lyme disease,” Lennon said. “They were convinced that it was in my head, I was depressed. They were trying to put me on medication for that. They said if you don’t want to accept that diagnosis, we think you just have chronic fatigue syndrome.”
It wasn’t until going to a chronic fatigue specialist, three years after first experiencing what he called “debilitating symptoms,” that he had a breakthrough.
The specialist told Lennon that his test results didn’t match that of her other patients who were experiencing chronic fatigue. She suggested he get re-tested for Lyme.
He was given two tests for Lyme. One is the enzyme-linked immunosorbent assay (ELISA) test, which, if it comes back positive, leads you to the second test, the Western blot.
The Western blot is a test that looks for antibodies the body makes against different molecules, or “antigens,” that are part of a specific type of bacteria.
In both tests, Lennon was not conclusively positive for Lyme.
But finally, in 2015, Lennon was officially diagnosed with Lyme disease after testing positive for two more tick borne diseases, one of which is called Babesiosis, a disease that infects red blood cells.
Because of this late diagnosis and initial negative testing results, Lennon called the ELISA and Western blot insufficient for being the only ways to determine whether or not somebody has Lyme.
“There’s not a big conversation around it, especially around suffering for longer periods,” he said, adding that, because he was living with Lyme for years, the disease still lingers in his joints and nervous system, even after being treated with antibiotics. “Unfortunately, I’ve been suffering since then. Since my first onset of symptoms, it’s been six years. I got diagnosed finally, properly, in 2015.”
And though he said his symptoms have improved since being treated with antibiotics, Lennon said he is far from where he was before contracting the disease.
“The symptoms have improved through antibiotics,” Lennon said. “But six years later I still have extreme fatigue, joint pain, I have something called neuropathy, where the nerve endings start to degenerate.”
“If you don’t catch it early, you could have debilitating symptoms for a long time because it’s already gotten into your joints and your nervous system and it could get into your brain and your heart,” he added.
In 2016, Lennon decided to team up with a friend of his to make a video, telling his story of suffering from the effects of living with undiagnosed Lyme disease, which led to an outpouring of calls and emails from people who said that they had gone through something similar.
“A friend of mine worked for WPRI and we did a video in 2016 and the response I got to that was incredible,” he said. “They forwarded all these emails asking for information, saying they were sick.”
Since then, Lennon said he has heard from more than 100 people, all of whom shared their story of living with the after effects of Lyme disease.
Not only have the effects of the disease caused a physical and mental toll, but a financial one too, costing tens of thousands of dollars out of pocket for medication and doctor appointments.
While Lennon was named an ambassador for the Lyme Light Foundation, which helps children and young adults get treatment all over the country, the costs have still been exorbitant.
“I’m a grant recipient of those guys. They’re the reason why I was able to go to the doctor in the first place. They’ve been a great blessing to a lot of people,” he said, adding that he has still had to pay more than $60,000 out of pocket for treatment.
“My life’s completely changed since I’ve dealt with the illness,” he said. “It just puts everything in perspective. If you’re not well, there’s nothing you can do.”
He said that ever since being diagnosed, he has tried to be more vocal about the potential long term effects of Lyme Disease, urging people to trust themselves when they know something is wrong.
Now after suffering for several years, Lennon, for himself, is turning to an alternative method of treatment called “induced hyperthermia.”
Induced hyperthermia is a treatment that purposely raises the patient’s body temperature to around 107 degrees to help eradicate diseases like Lyme. And while the treatment is not approved of by the Food and Drug Administration for Lyme, and is generally considered controversial in the United States–the Center for Disease Control and Prevention says alternative methods like induced hyperthermia have been “associated with serious complications”–it is now being practiced and studied in countries like Canada and Germany.
Antibiotics are also used during hyperthermia treatment.
Regardless, after being in pain for so long, Lennon said he is willing to try anything in order to find a path toward healing. And, he said, his doctors have suggested receiving induced hyperthermia in Germany as his best hope for healing from Lyme disease.
He said he projects the total costs for the trip and procedure to be around $23,000.
“Having to go to those lengths in order to find relief for something that you can go into your backyard tomorrow and get bit,” he said.
“The lengths that me and my family are having to go through to just live a normal life,” he said, pausing. “I’ve just been debilitated. I was out of work for several years. I’ve been working the last couple but it’s hard to manage it too because it’s a full-time job to manage the illness in itself.”
Learn more about Lennon’s story at his GoFundMe page, https://www.gofundme.com/help-dan-get-to-germany-for-lyme-treatment.