Tag Archives: late stage lyme

You’re Not Crazy—You Have Lyme

By Jennifer Crystal

I knew there was something physically wrong with me, but when my blood work came back clean and I didn’t fit into any classic diagnostic box, the nurses decided the symptoms were psychosomatic.

When I first got sick during my sophomore year in college, the nurses at the health center ran the typical “college” tests: mono, strep, pregnancy. The results were negative, so they told me that my fever, low blood sugar reactions, flu-like aches, exhaustion, and pounding headaches were a result of stress. I rested as much as I could, tried meditation and deep-breathing techniques, and dragged myself to class. When my symptoms persisted, I returned to the health center. The nurses told me I was just run down.

But I’d been taking care of myself since that first visit. I was eating better and sleeping more than I had during my freshman year, when I’d stayed up late partying and subsisted primarily on pizza and beer, and yet had still been perfectly healthy. I did burn the candle at both ends, but sophomore year I couldn’t have done so had I wished. I was too tired to do any of my usual activities like running, skiing, and participating on committees. I knew there was something physically wrong with me, but when my blood work came back clean and I didn’t fit into any classic diagnostic box, the nurses decided the symptoms were psychosomatic.

“Maybe you should see someone in counseling about all of this,” one of them said.

At the impressionable age of nineteen, I worried the nurse was right; maybe these symptoms were all in my head.

Ironically, they were in my head, but not as a result of hypochondria or any mental illness. Tick-borne bacteria and parasites were attacking both my body and brain. There were real spirochetes in my head, not psychiatric illnesses. My fevers, body aches, and hypoglycemia were caused by Lyme disease, and two of its co-infections Babesia, and Ehrlichia. But it would be another eight years before a Lyme-Literate Medical Doctor would figure all of that out, and by that time, I would have been told “it’s all in your head” by more people than I can count.

Unfortunately, my plight is all too familiar to patients of late-stage Lyme disease complicated by co-infections. At some point in their journey to recovery, many have been told that they’re crazy, too. And not just by medical practitioners. Sick patients, needing only support and care, also heard this message from family members, friends and co-workers. So common is this write-off of those suffering from unknown ailments that there’s an entire chapter in Denise Lang and Dr. Kenneth Liegner’s book Coping With Lyme Disease titled “I’m Not Crazy, I Have Lyme!” When I first read that chapter after being accurately diagnosed with tick-borne diseases, I wept. I knew exactly what it felt like to be so misunderstood.

I also knew exactly what it meant to feel “crazy” from Lyme. As Lang and Dr. Liegner write, “…talk to a thousand Lyme patients and you will get a thousand variations of the same story: people who are normally easy going become moody and belligerent; those who are outgoing become lethargic; mood swings cause the breakup of marriages and career relationships; the inability to concentrate results in job losses, plunging grades in school, and accidents; short-term memory loss affects habits and speech; and everywhere there is depression, a loss of self-esteem, and suicidal thoughts from people who have never had a history of such things.”[1]

The important thing to recognize is that these psychological manifestations are secondary to Lyme, not its root cause. At the 2017 International Lyme and Associated Diseases Society conference in Boston, Dr. Phillip DeMio of Ohio, who specializes in pediatric tick-borne illnesses and autism spectrum disorders, emphasized the fact that psychological symptoms of Lyme are not primarily psychiatric. He drew an analogy to head injuries, noting that a person acts strange because of a concussion, in the same way that a person with Lyme disease may exhibit unusual behaviors, but that’s not because either have a pre-existing psychiatric condition.

Mental illness is real, and should be evaluated and treated with respect when it actually is the root cause of a person’s unusual behavior. But a good doctor whose patient presents with a sudden onset of psychological symptoms, without precedent in their medical history, should look for all possible root causes, which could be psychiatric, but are more likely to be tick-borne illness, or some other disease.

No one should be written off as crazy, even those with mental illnesses. The word is pejorative. If you’re experiencing new symptoms, be they physical or psychological, or if you notice behavioral changes in a friend or family member, at least be open to the idea that the root cause might be other than psychological.  In my case, it was tiny spirochetes and parasites put in my system by a microscopic deer-tick. If my college health center nurses had considered tick-borne illnesses from the start my long-term health problems could have been a lot smaller, too.

[1] Lang, Denise and Liegner, Kenneth. Coping With Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment. 3rd ed. New York: Henry Holt and Company, 2004 (70).


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at  [email protected]

57 miles

Tackling 57 Miles to Take on the Fight Against Lyme Disease

Allison Donaghy is taking her fight against Lyme disease to the streets, for 57 miles to be exact.

 

As countless thousands prepare for the grueling 26.2 mile New York City marathon this fall, a Washington D.C. area woman has her sights set on a different goal. On November 2 she plans to run 57 miles from the Penn State track in State College, PA to the Bucknell University track in Lewisburg to raise funds for Global Lyme Alliance (GLA).

57 Miles? That distance would be an amazing accomplishment even for the most accomplished athlete. But for Allison Donaghy, who is battling late-stage Lyme disease, the challenge is even more awe-inspiring.

This will be the first 50+ mile run for Donaghy, a 2012 Bucknell alum, who was diagnosed with Lyme in 2016, after several years of searching for a medical answer to her many health issues.

She still deals with many symptoms that could have been prevented if she had been correctly diagnosed at the start, but Donaghy is not one to entertain regrets.

Donaghy, 27, was part of both the cross country and track teams during most of her years at Bucknell, decided to take on the lengthy 57 mile challenge to raise Lyme awareness. “At Bucknell,” she says, “the men’s cross-country team has a tradition of running from one campus to the other, so I am carrying on that tradition through my ultra-distance fundraising challenge.”

Allison Donaghy, North Face Endurance Challenge, Algonkian Regional Park, VA, April 2017

A life-long runner, Donaghy said that prior to being diagnosed with Lyme she had some health issues, but that trying to discover the cause was like a “wild goose chase.” She asked her then-primary care doctor for a Lyme test in 2015. But when only three of the five bands on the test came back flagged (the Centers for Disease Control and Prevention requires five for a Lyme diagnosis) her doctor told her she was probably just stressed. Yet her symptoms persisted and grew worse. Donaghy began losing her hair, felt extremely tired, suffered constant headaches, joint pain and digestive problems.

After several ER visits, she went to the Mayo Clinic in Florida and saw a number of doctors there, but left with no answers. She also saw gastro-intestinal doctors and was told she might have Crohn’s disease. One doctor diagnosed Donaghy with chronic gastritis. “But because I was having so many other non-digestive issues, she urged me to see another specialist, perhaps even a Lyme literate doctor,” Donaghy says. She took the doctor’s advice, found a Lyme Literate Medical Doctor and was diagnosed in short order with chronic Lyme.

“I was relieved I had an answer,” says Donaghy, a freelance writer/editor who works as an assistant manager at Pacers Running in Alexandria, Virginia, “but I wasn’t sure if the treatments would work.” She was put on four months of antibiotics and other medicines, numerous supplements and changed her diet radically.

“I feel a lot better, but it doesn’t mean I don’t have bad days,” she says. “I still deal with symptoms which could have been prevented if my initial doctor had known more about Lyme and I had been correctly diagnosed. But I feel fortunate that I am still able to run and do many things I love, compared to others who struggle with a late diagnosis of Lyme.”

On November 2, Donaghy’s plans to run and walk, stopping every five miles to make sure she has enough nutrition and hydration. She will have a crew on hand during the run to make sure she’s okay and her twin sister, a cyclist, will be riding alongside her.

“I’ve been running for as long as I can remember,” she says, “and running to raise awareness was an easy leap for me.” Nevertheless, she knows it won’t be easy. “I have no illusions that it isn’t going to hurt a lot, but I am excited about the challenge.”

Naturally, she hopes people will donate to support her fundraising effort (see link below). “Some of the stories I’ve read [about Lyme sufferers] are heartbreaking. Their lives are forever changed by the disease. These individuals are the ones who motivate me to run more than anything. I want to make a difference in the lives for those who are so much worse off than me.”

“Allison is truly a Lyme Warrior,” said GLA’s CEO Scott Santarella. “We’re deeply appreciative that she wants to raise awareness and funds that are so important in fighting this and other tick-borne diseases.”

Donaghy says she decided to advocate for GLA because “the organization’s mission to fund research and educate doctors about Lyme disease really resonated with me. I hope that the funds I raise will make a real difference in someone’s life.”


Click here to support Allison’s amazing 57 mile run.