LivingLymewithDisease

Rich spends his summer days at the family cottage on Crystal Lake. The extended relatives gather in droves to enjoy everything it has to offer— boating during the day, bonfires at night and nonstop meal-prep. Uncle Rich is the instigator of all things fun, and “can’t stop won’t stop” is the unspoken agreement.

But this summer was different. For weeks, a strange fever would come and go. His newfound insomnia at night became intolerable. Even at work, he admits, “I had to put my feet up on the desk and close my eyes every day. I couldn’t rally one hundred percent no matter what I did.” It wasn’t until his wife started to google symptoms that they suspected Lyme disease. Was it that tiny red bump on his leg a few weeks ago that started all of this? Maybe.

Jenny likes to golf, walk the dog and garden at her farm. When an onslaught of bizarre symptoms showed up, she was mystified. Extreme exhaustion, body pain, lead-weight arms, chest pain. Every step she took sent pounding pain to the top of her head. A low-grade fever, exhaustion and profound sweating at night. Edema started in her legs, then gout and finally pink eye. Emergency room tests revealed nothing. Then, allergic reactions to medications she had previously tolerated. Looking back, was it that little rash she noticed while golfing a month ago?

Anne is the consummate tomboy and has been since childhood, her brothers hard pressed to keep up with her boundless energy. She and her husband have worked side-by-side building houses together while raising five children (all homeschooled) and keeping up with grandchildren. About 20 years ago she got the flu and just when she thought it was over, it would come back. Extreme exhaustion, inability to lift her legs, terrible headaches and a cataract in her early 40s.

by SHEA PETAJA photo

Anne pushed through and ignored the pain as a temporary setback. Her daughter noticed the changes and insisted (several times) that she pursue answers. Eventually she did, but the truth is, she waited too long.

Rich, Jenny and Anne all have something in common: they are hardwired to push through pain and none of them suspected Lyme disease.

With more than 300 symptoms that manifest differently in different people, Lyme is very hard to detect. In fact, 75 percent of Lyme patients have no memory of a tick bite. Most patients are diagnosed with chronic fatigue, autoimmune disorders or completely dismissed. If not diagnosed immediately, patients like Anne are faced with chronic Lyme disease. Without treatment they will learn to manage the pain but very rarely be cured of it. Lyme disease is like a puzzle without a picture. The pieces fit together but it’s up to you and medical professionals to interpret the image.

Dr. Aaron Heindl, a family doctor in Traverse City, diagnosed Rich almost immediately. “It can be a very complicated diagnosis,” he says, “but if you have a combination of fever, joint pain, flu-like symptoms and remember a bite or classic rash, it’s good to get tested.

“Historically, Michigan has not been listed as a high-risk area so it wasn’t on many practitioners’ minds, including my own, until recently. Different patients will have a variety of manifestations of the disease,” Heindl explains. “The type of symptoms a patient is having, and the timing of them, can make a big difference in how your practitioner will choose to evaluate you.”

Living With Chronic Lyme

Anne Fielstra of Traverse City waited too long to seek a diagnosis and treatment. This can be common since many do not suspect Lyme disease at the start, but the longer the disease goes undiagnosed, the tougher it can be to treat.

Anne explains she became a “human library,” an expert on Lyme. But it took over her life. “It’s easy to become self-absorbed in the pain,” she admits. At some point she realized that if it wasn’t going to kill her, she had to learn to live with it. Anne wakes early in the morning to give her body time to become mobile. Daily stretching, walks, a strict vitamin regime, breath work and clean eating keep her thriving. If she can’t sleep, she gets up and does something so as not to lie in bed with frustration. She enjoys her life by hiking, swimming, biking and staying active. She says, “Awareness is your friend, but obsession will work against you.”

Dr. Jeffrey Wulfman, M.D., has spent most of his 30-year career in Vermont. He never set out to be an expert on Lyme disease; it started with one patient who had a mysterious illness that started teaching him what he didn’t know about Lyme, which was a lot. Soon he realized he was in the middle of a silent epidemic of a hidden, potentially devastating illness exacerbated by a lack of knowledge. The reality was, most of what he was taught in school was inadequate. He quickly saw how complex the situation was and to become proficient in the world of tick-borne diseases, it would require extensive self-study and rewriting his belief systems. There were many unknowns, but the need was great.

He learned that Lyme disease is a great imitator and there is no single way it presents, or single way to diagnose and treat it. Lyme disease also can’t be ruled out with labs because the accuracy of tests are very poor. During the first month of onset of symptoms, lab tests are maybe 50 percent accurate—a coin flip. Also, there is no test that can “prove” cure. Antibodies produced to fight off the bacteria that cause Lyme disease can persist— and show up in blood tests—long after the infection is gone.

Additionally, due to the weakening of the body’s systems in the chronic forms, the longer someone has been ill the more a cascade of other problems can develop such as immune dysfunction, hormone issues, neuro-psychiatric issues and parasites. It can become very complex over time.

Chronic late-stage symptoms are much less responsive to treatments, so it’s very important for patients to advocate for themselves quickly. If suspicious of acute (recent onset) Lyme, Dr. Wulfman is an advocate of antibiotics immediately, because, “At the early stage they can be curative and prevent, with very little risk, the development of a potentially life-altering illness.” The chronic condition, by contrast, usually requires a much more comprehensive approach.

Words Of Hope

People are incredibly resilient, and Dr. Wulfman has seen the sickest of the sick get a lot better. His message? Prioritize self-care. The best prevention is to have a vital and healthy baseline in case of infection. Lyme disease or any chronic illness is relentless, making you come to terms with your life and lifestyle, and to choose healing and, equally important, a healing mindset.

Lastly, remember to be your own best advocate, and trust your own knowing that something is not right. Advocate for your health at all times and continue to make your immune system strong so that you can enjoy all the adventures life holds.

OTHER RESOURCES:

• International Lyme and Associated Diseases Society, ilads.org

• “Bite Me” by Ally Hilfiger

• lymedisease.org

• Dr. Wulfman is not currently taking patients; however, he is involved in a new group model for people to have better access to addressing chronic complex illnesses including tick borne disease; learn more at functionalmedicineconsultinggroup.com.

Shea Petaja is a Traverse City-based speaker, writer and certified life coach, who also performs improv and is a regular guest on NewsTalk 580. She is an advocate for those suffering with chronic illnesses and the medical practices that champion patients’ healing. sheapetaja.com