Dealing with Lyme Disease

lyme disease word cloud

My Story

I remember the day I received my test results. Positive. I had so many questions, but the most important for me was “how long have I had this thing, and what can I do now to get well again?”

For those of us living, working, playing, and vacationing in Minnesota and Wisconsin, Lyme Disease is an unfortunate reality that we have to consider each time we head outdoors. With the mild winter we’ve had this past year, tick sightings are already being reported (and I’ve personally seen them while out on recent hikes in the Twin Cities metro area).

The Centers for Disease Control (CDC) estimates that each year there are 300,000 new cases of Lyme Disease in the United States, the majority of which happen here in Minnesota and Wisconsin, and also in several northeastern states, though Lyme is becoming more prevalent and widespread throughout the country. If caught early, Lyme Disease is usually easily treatable with a course of antibiotics. Sadly, when left undiagnosed, or improperly treated, it can cause devastating effects on the entire body, and treatment then becomes much more complex and multifactorial.

I recall feeling relief at the time of my diagnosis. Finally I had a solid answer for what had been causing the multitude of bizarre and sometimes debilitating symptoms that I had been experiencing for several years. I expected I would be well in no time. Little did I know how complex and individualized this treatment process would need to be.

It seems as though every aspect of Lyme Disease, from diagnosis to treatment, is controversial. (This is, I believe, a huge part of the reason it took so long for me to get properly diagnosed.) Patients often report having visited multiple healthcare providers and having their inquiries about Lyme Disease dismissed. Even if a diagnosis is made, many physicians are not willing to provide treatment past the standard simple course of antibiotics that are offered in acute cases, even if the patient is still feeling unwell. Any symptoms that persist following that treatment (typically about two weeks of doxycycline or amoxicillin) are then referred to as “Post Lyme Disease Syndrome” in the mainstream medical community, and prescription pain relievers, GI medications, antidepressants, and other drugs to manage and cover up symptoms are commonly prescribed.

Those of us with Lyme Disease often live with ongoing or sometimes migrating or relapsing symptoms, and the prescribed pharmaceutical treatments often fail to provide much needed relief. We may look well, but inside our bodies feel like they’re falling apart. Interestingly, many patients have found by accident that their symptoms temporarily improve or even disappear whenever they are prescribed a course of antibiotics for some other reason.

This has lead to a movement by a small group of doctors that are commonly referred to as LLMDs (Lyme Literate Medical Doctors) and LLNDs (Lyme Literate Naturopathic Doctors). These providers recognize that people who have already been treated for Lyme may have a persistent infection even after the standard protocol is completed. They are trained in the treatment of Chronic/Persistent Lyme Disease, and are willing to provide care and services to patients whose symptoms continue past that initial course of antibiotics, those who can't or don't want to use antibiotics, or whose diagnoses were simply missed in the early stages of their disease.

These unique providers can offer a wide variety of treatment options, which may include continued antibiotic regimens, various herbal protocols, and supportive treatments to help rebuild the immune system and manage symptoms during and after treatment. There are also many nutritional supplements, dietary protocols, and lifestyle modifications that can be helpful for those dealing with Lyme.

Hope for the future

Each week I look forward to adding information here about topics that relate to Lyme Disease, talking about the things that have helped me along my own journey with this illness, sharing interviews with some of the folks who are on the front lines in this battle, both providers and patients, and offering resources for anyone who is suffering with Lyme Disease, suspects they may have Lyme Disease, or has a friend or loved one in a similar situation.

Above all else, please know that you are not alone, and that there is hope! We are all learning more every day, and Lyme Disease patients (we often refer to ourselves as “Lymies”) are an incredibly resilient and resourceful group. We are finally seeing what I feel to be some promising steps in the right direction (albeit slowly) and recognition from the mainstream medical community, and I believe a huge part of that has to do with all of the hard work of Lyme Disease patient advocates, including many high profile celebrities who have graciously made their own stories public to help bring awareness about Lyme.

Here at Tailor Made Nutrition, we are pleased to offer a number of herbs, supplements, and other products that may be helpful to someone dealing with Lyme Disease, in any of its stages. I will touch more on some of these in the weeks to come. Of course, our well trained staff is always here to assist you, and we also have health care providers on site, including a Naturopathic Doctor who frequently works with those dealing with Lyme Disease.

Until next week, be well.

About the Author

Krista Ostrom

Krista Ostrom is a Lyme Disease patient who has extensive knowledge about Lyme, its many co-infections and co-conditions, nutrition and supplements, food intolerances and allergies, and specialty diets. When she’s not working at Tailor Made Nutrition, you can usually find her hiking with her family, practicing yoga, traveling, cooking her favorite meals, and “geeking out” about integrative health topics.