What’s preventing your recovery from Lyme disease?
By Todd Maderis, ND
Jan. 3, 2023
As we begin a new year, I have spent time reflecting on what is preventing many people with complex chronic illnesses, including Lyme disease, from getting better.
If you’re one of the many people struggling to recover from chronic illness, I offer some thoughts for your consideration.
So, what is preventing people with chronic illnesses from getting better?
Access to physicians with experience treating Lyme disease
According to LymeDisease.org’s patient-driven research platform, MyLymeData, a significant obstacle to an accurate diagnosis is patient access to care by a healthcare provider experienced in Lyme disease and associated infections.
Almost 50% of respondents in the MyLymeData registry reported they saw over seven physicians before being diagnosed with Lyme disease. Treatments for Lyme disease are more effective the earlier they are implemented. Unfortunately, for 73% of respondents, it took over a year for a correct diagnosis.
In a MyLymeData survey of Lyme-treating doctors, physicians report the top three reasons patients receive a delayed diagnosis of Lyme disease are inadequate physician education about tick-borne diseases, false-negative lab results, and a prior misdiagnosis.
Barriers that contribute to a delayed or accurate diagnosis include poor insurance coverage for Lyme disease, healthcare costs, and a limited number of healthcare providers that diagnose and treat persistent Lyme disease.
As cases of Lyme disease rise in the United States and research studies demonstrate a clear need for improved diagnostics and treatment, we will likely see increased recognition and awareness by healthcare agencies and improved insurance coverage.
Where do people with chronic illnesses turn when they don’t have access to quality care?
When people do not have access to a physician experienced in treating Lyme disease, they often turn to online patient support groups for guidance. While these groups can be valuable sources of information and provide emotional support, the suggestions offered by one person may not be what is best for another.
Has the person seeking help been adequately tested for Lyme disease and all associated infections by a reputable tick-borne infection testing laboratory? Do they have additional variables undermining their health, such as high environmental toxin levels or immune system dysregulation, that must be addressed? What is the correct order of treatment?
Physicians treating complex chronic illnesses are challenged to identify all the possible underlying causes of a patient’s symptoms and implement effective treatment strategies. It would be difficult for a member of a support group who is not a physician to know what is best for another person.
Obtaining an accurate diagnosis
If you do not have a map, how do you get to where you want to go? Recovering from illness works the same way. An effective treatment strategy is only as good as the accuracy of the diagnosis. Nuances associated with Lyme disease lab tests create a challenge to getting an accurate diagnosis.
I only rely on reputable Lyme specialty laboratories to make a diagnosis. Testing for chronic viral infections, mold illness, heavy metal toxicity, digestive disorders, and more presents the same obstacle.
Conventional labs like LabCorp and Quest are fine for general markers like blood counts, chemistry panels, and thyroid hormones, but specialized labs need to be used for all the conditions mentioned above. Even within specialized laboratories, some provide more accurate data than others.
The labs that provide me (and my patients) with the best “map” change over time based on advances in testing and my clinical observations. If you tested for tick-borne infections or the above conditions over a year ago, the tests should be repeated because testing has improved. It’s essential to know the current status of the results.
Receiving effective treatments
If you have access to care from a physician experienced in treating Lyme disease and have identified all the underlying causes(s) of your symptoms, the next hurdle is employing effective treatments.
With correct diagnoses, the therapies need to be specific and intentional. Patients tell me they have been prescribed successive treatments for a diagnosis when each treatment did not work. This is like throwing the proverbial spaghetti at the wall and hoping it sticks. Of course, identifying efficacious therapies is challenging, but having a clear direction and using proven treatments is an effective strategy.
Losing hope of healing
People lose hope they will recover from their illness the longer they remain sick. It is disheartening to see patients feeling hopeless because they have been sick for years, have seen many doctors, and have tried dozens of treatments. Hopelessness results from one (or more) of the above reasons.
Some patients I see are mentally unable to move forward once they have an accurate diagnosis and access to effective treatments. It could be that they don’t believe they will ever recover because they have been down multiple dead-end roads of treatment. Some people are traumatized by their illness and have fear or anxiety about an adverse reaction to another treatment. Others do not have the support of their family or partners, possibly due to the invisible illness that is Lyme disease. As the saying goes, “if nothing changes, nothing changes.”
As we begin a new year, I encourage you to reflect upon your health to consider what prevents you from fully recovering from your chronic illness. The general challenges I outlined can serve as an algorithm to help you identify the obstacles to healing so you can take action that moves you closer to optimal health.
Dr. Todd Maderis is Founder and Medical Director of Marin Natural Medicine Clinic in Larkspur, CA. He blogs at DrToddMaderis.com.