Why is Lyme Disease So Confusing



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Hey everyone, I hope you are enjoying this beautiful weather we have been having! This week I want to talk a little bit about some of the different thoughts surrounding Lyme Disease. You may hear one thing on the news, another thing from your healthcare provider, and another thing altogether from a friend or colleague, and it can all be very confusing at times.


A Brief History of Lyme Disease

In the early 1970s, in a town called Lyme, Connecticut, a group of children started coming down with some strange symptoms. It was initially thought to be Juvenile Rheumatoid Arthritis (which is fairly rare), but some very observational moms in town noticed that the number of new cases of JRA was much higher than statistically normal, and they began to question whether something else might be going on.

By about the mid 1970s scientists had surmised that this was in fact a new disease, and they called it Lyme Disease, after the town’s name, but they were still unsure of what was causing this illness.

It wasn’t until 1981, when a scientist named Willy Burgdorfer discovered the bacterial spirochete that causes Lyme Disease, and the bacteria was then named after him: B. Burgdorferi. Understanding that Lyme was in fact a bacterial disease, treatment with antibiotics became the norm.



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Fast Forward to Today

The Centers for Disease Control and Prevention (CDC) estimates that there are 300,000 new cases of Lyme Disease in this country each year, and those are just the reported cases. This number does not reflect any people who may have undiagnosed Lyme, or who have Lyme and have been misdiagnosed as having something else.

Typically, treating Lyme Disease, there are a few main schools of thought.

  1. The Infectious Disease Society of America (IDSA) has published guidelines that are currently being reworked, but their general position seems to historically have been that patients who have been diagnosed with Lyme using the standard, two-tiered test (ELISA, and then if the ELISA is positive, then a Western Blot) should receive a 2-4 week course of antibiotics, and any remaining symptoms are the result of Post Lyme Disease Syndrome or something else entirely. They express concern about the overuse/misuse of antibiotics in our society.
  2. The International Lyme And Associated Diseases Society (ILADS) provides education to medical professionals and to the general population about Lyme and its common co-infections. The ILADS recommendations for diagnosis and treatment offer much more leeway to the treating physician to look at the “big picture,” so to speak. Diagnostic tests, clinical symptoms, and how the person is responding to treatment are all tools that can be used. So while one patient may respond well to continued antibiotic treatment, another may do much better on an herbal protocol (more on that below). They seem oppose a one-size-fits-all treatment approach for Lyme patients.

Different Treatment Modalities

When we talk about treating Lyme Disease, there is the treatment of acute, very early-stage Lyme Disease, and there is treatment of late-stage, chronic Lyme and/or post-Lyme symptoms.

Early Lyme usually responds well to a course of antibiotics (typically 2-4 weeks). I personally know a handful of people whose Lyme story goes just like that. They got bit, got sick, took the antibiotics, got well. End of story. That’s definitely the best case scenario.

On the other hand, when Lyme is not diagnosed early, treatment gets much more tricky. When you hear someone with persistent Lyme symptoms talking about treatment, they may be talking about several different things.

  1. Antibiotics - sometimes people with Lyme may respond well to that initial course of antibiotics, but their symptoms return when the treatment is stopped. In this case, they may opt, in conjunction with their treating physician, to continue with antibiotics for a longer period of time.
  2. Herbals - there are several herbal protocols that are commonly used among Lyme patients. Stephen Buhner (who I have mentioned in a previous post) has written extensively about this. Byron White and Cowden are a couple of other popular protocols. These are typically intended to address any remaining Lyme bacteria, co-infections, fungal issues, remaining symptoms, and detoxification assistance. Patients who have either tried and failed the antibiotic treatments, or who don’t wish to use or continue antibiotics, often find these protocols very helpful. Many LLMDs or LLNDs support the use of some of these herbal protocols, either on their own, or in addition to antibiotics.
  3. Nutrition and supplements - it’s not at all uncommon for Lyme patients to develop nutritional deficiencies, GI issues, malabsorption problems, and food intolerances. Identifying and addressing problem foods, and ensuring that nutritional deficiencies are corrected can go a long way toward regaining health.

Lyme is a difficult disease. Like other “hidden” illnesses, its patients are often presented with multiple opinions about how best to treat the disease and its many symptoms. We are learning more every day, and my hope is that one day there will be a much better understanding of how best to treat this complex illness.

Until next time, 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.




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