Lyme, Tick-borne disease, chronic illness, simplified, individualized care

Photo in May 10 email.

Lyme Climb: Shrinking the Mountain of Testing and Treatment

By Dr. Aparna Taylor, MSc, ND

Diagnosing and Treating

Navigating through the controversial and complex forest of Lyme and associated diseases can be overwhelming for patients as well as clinicians. One of the challenges is the slow shift in the paradigm of thinking that these infections are limited to endemic areas. Another is the narrow view that the treatment is easy, short in duration, and any remaining symptoms are not related to a persistent infection. Finally, many patients are emotionally charged about their challenges and, because they may physically present well, are labeled as suffering from a psychiatric disorder rather than a physical one.

On the other side, is the grave possibility that patients are being diagnosed and treated aggressively for an infection that may not be the root cause of their illness.

How can we find our way through the thicket if one paradigm sees tick-borne disease as invisible while another may be seeing infection in every symptom?

What I tell patients is to be aware of the bias either way. If the treatment and interventions were non-invasive, with low risk, there would not be as much confusion and challenge. The risk of long-term high doses of antibiotics in multiple classes is serious, impacting the microbiota and causing loss of diversity of organisms. The risk of a long-term complex treatment plan using non-pharmaceutical interventions may not have the same consequences as antibiotics, though carries its own financial and psychological burden.

What is a clinician to do? The bias of under- or over-diagnosing puts the primary care clinician in a difficult position.

There are practical challenges in diagnosis. The biology of the bacteria’s pleomorphic forms^1,2 and preference for tissue rather than bloodstream makes direct testing inaccessible. Though antibody tests are some of the most widely used, the issue of antigen-antibody complexes, immunosuppression, and cross reactivity are still limitations. There is also the challenge of waiting for an immune response before testing for antibodies after an initial infection.

It is up to the clinician to interpret the test results with a full clinical picture of the patient. There are more current techniques and tests that will provide a different way of assessing an individual.

There are multiple labs offering tests that help guide clinicians. Since most are out-of-pocket expenses for patients, assessing which tests to use is up to the individual clinician with his/her patient, based on the questions they are trying to answer. The laboratory should be accredited and offer up-to-date techniques. ArminLabs in Germany fits this criterion. The EliSpot from ArminLabs is a T lymphocyte test that can be used after an initial infection, as T cell responses behave differently than B cell (antibody). A positive response (2+ or higher) offers patients and clinicians insight into the risk versus benefit of an intervention such as antibiotics. For accuracy, a patient must not be on antibiotics or immunosuppressants, such as methotrexate or corticosteroids, at the time of testing. The results are based on T cell activity over the last 60 days.

In addition, I typically test for natural killer cell count, (CD 57). If the EliSpot is negative, this non-specific test will likely indicate a persistent infection and will help determine if antibiotics are still an intervention to consider. This is relevant as often clinicians will rule out tick-borne disease if a Borrelia EliSpot is negative: this is a grave mistake. Other tick-borne illnesses may be playing a part and are typically the norm rather than the exception when assessing persistent infections. Cost is the limiting factor for testing; there is also the possibility that there is an infection not identified with available tests. For the CD 57 test, there are different interpretations of what is low. In my experience, results around or just under 100 (80-100, where above 130 is optimal) may not be a tick-borne illness or persistent infection, as other causes of immunosuppression may be present not necessarily due to an infection. As always, treat the person not the test.

With respect to other infections, Leona Gilbert’s group has developed a test offered through ArminLabs that tests for several tick-borne diseases including common viruses. This antibody test has important assets: It has high specificity and sensitivity, and it can test for other pleomorphic forms of Borrelia. What was previously thought of as a cyst³ has now been identified as a round body,^1,2 not an impenetrable cyst but a form that has a cell wall, which means that it can be tested for. This test exemplifies how medicine and science are continually evolving and changing.

Though we are able to make clinical diagnoses based on an appropriate assessment, physical exam, testing, and history, more often than not patients will have atypical and vague presentations that have other diagnoses that may explain some of their symptoms. There are a host of other tests, as treatment continues, that help link specific symptoms with a possible infection, as other EliSpot tests are offered for other infections. The peace of mind of having an answer does not have a monetary value: patients value having something on paper. Even a negative antibody tests is still an interpretable test.

Investigating other options prior to starting the long train of multiple, high doses of long-term antibiotics or complex non-pharmaceutical regimens for months and months can help support both patient and clinician weigh the risk versus benefit of the interventions.

Treating

As many of us have experienced, most patients in our practices have been on a journey that began prior to the initial office visit. Whether it has been a journey of unsuccessful doctors and specialists, failed treatments in the past, refractory illness or relapse, or simply a second opinion, there are many reasons patients will seek our help.

Over the years, I have found myself simplifying treatments rather than adding more complexity to the regimen. This has been one of the most important successes that I have seen to correlate improvement in the patient population; it not only helps to focus the treatment but also to appropriately determine what is helping and what is not, with the additional benefit of lowering cost to the patient.

One of the benefits of evaluating multiple facets of an individual’s health is assessing obstacles to cure. This can range from simply identifying the different infections (bacterial, parasitic, fungal, viral, or other) to uncovering heavy metal burden, mold toxicity, poor lifestyle, nutritional deficiencies, comorbidities, or clogged detoxification pathways among others. An unfortunate side effect of this complexity is multiple and expensive interventions and lifestyle changes, however well-meaning, that add more stress to the individual’s ecosystem than intended. Most of our patients are resourceful and intelligent, and either self-treat, self-diagnose, or have seen practitioners to guide interventions.

Ultimately, the pathogenic load of whatever infection(s) involved needs to be decreased and the immune function improved in order to tip the balance to appropriate healing. Further immunosuppression arises if there is significant stress from swallowing 50+ pills a day, following a strict diet, removing all types of potential exposures, traveling for the best practitioner to perform a procedure, and spending thousands of dollars on testing that puts the individual under financial burden. This is not a criticism of this approach, as these are the very factors that may be needed; most of us adopt a multifaceted approach because it treats the whole individual. This simply asks the clinician to consider a harm-reduction approach for some patients, helping them weigh the risk versus benefit and understand overall consequences. Many patients are willing and able to adopt many changes at once and able to sustain them. There are others, however, who find this challenging and not practical and may need a step-wise guided path to change that is sustainable.

While the interventions have merit, this is a bias we must face head on.

Is this intervention necessary? This is not meant to assume these interventions are not helpful, only to look at the impact overall on the patient and whether it is the best time and to consider what may do more harm at that time.

In some cases, expensive and extensive regimens and testing lead to the same intervention. Although the information is useful, consider with the patient the risk versus benefit of the investigation (extensive rather than pointed tests) as well as the intervention, and perhaps resist the urge to treat with many things all at once.

So, what is most important to treat? This is the finesse of individualized treatment and strategy based on each patient. A strong foundation of appropriate nutrition is paramount, not necessarily gluten- or dairy-free for everyone; but what will be a suitable starting place? Simplify your process and have a plan; the patient will appreciate this.

First, bring wholesome food, water, and people into the environment. Work towards smoking cessation as smoking taxes the immunity and detox pathways. A plant-based diet with plenty of vegetables and no processed foods (if gluten-free, avoid junk/gluten-free products) is one of the most difficult steps as patients are too tired to shop, prepare, and cook wholesome foods. In some cases, wholesome food delivery services, more available in bigger cities, may be a better option and ease the burden. I work with each patient to address a wholesome diet in a way they are able to commit to.

Food sensitivity testing can be very helpful, though to keep costs low, initially start with removal of junk or processed food and sugar to start the process of immune support. Elimination or anti-inflammatory diets are useful at the right time. Most patients have inflamed digestive tracts and will end up with positive sensitivities. As this is not likely the primary cause of their symptoms but significantly impacts the immune system, nutrition and gut healing should be one of the priorities. If appropriate and no allergy, helpful products include Villicote, which is N-acetyl glucosamine (contraindicated if shellfish allergy), or L-glutamine by Thorne, Cytomatrix, or another powder-based brand without additives, or demulcent herbs such as slippery elm, or for diarrheal conditions Filipendula ulmaria (meadowsweet), which acts as a soothing tonic to the digestive tract. Herbs can be sourced from a local herbalist or company that specializes in preparing herbal medicines. If tolerated, tinctures or tea preparations will impact the mucous membranes immediately rather than capsules or tablets.

Whether on antibiotics or not, ensuring the gut is colonized appropriately with good bacteria has a far-reaching effect. The same probiotics will not suit all patients. Without antibiotics, some patients are able to use fermented foods if appropriate. Most patients do better with a supplement, brands ranging from Klaire Labs, Metagenics, or others. The strains used depend on other factors as well (SIBO, IBD).

The top three reasons patients fail to respond are (1) smoking or sugar addiction, (2) insomnia, and (3) emotional trauma and continual stress response. Assuming accurate infectious cause, in my experience, if there is a delay in response often these are the most common causes. There are other reasons, of course, and uncovering these with each patient is part of the clinician’s differential diagnosis.

The addictions serve a purpose. Finding a different way to cope and reading books such as Allen Carr’s how to stop smoking series help tremendously. Sugar addictions serve a similar purpose and may be from habit, underlying infectious ‘craving’, or stress response, often related to serotonin pathways. Another reason to individualize treatment is the possibility that a sugar-rich diet (and stress) may present differently in men and women.⁴

Good-quality sleep is rarely reported in this population of patients. Hypersomnia without refreshed waking or insomnia is more the norm. Inflammation, whether from pain or actual antagonistic action of cytokine-associated substances, may be inhibiting spontaneous sleep.⁵ This relationship is complex, and the details of which cytokines or inflammatory markers are involved may not be as critical as an intervention to help globally reduce inflammation (diet, hydration, stress response, pain management). The basics of sleep hygiene often begin with short-acting hypnotics or anxiolytics, whether pharmaceutical or herbal.

The root cause of sleep disturbance, particularly in the last five years, is excessive device and technology use. Intervention is often needed. Curtailing overuse of technology (often due to patients’ efforts to educate themselves or to have a sense of community) is an aspect of sleep hygiene that has dramatic results. Instruction to patients to cut all technology/device use by half, and none one-to-two hours prior to bedtime is an overlooked intervention that may eliminate the need for habit-forming medications. Sleep disturbance and technology use near bedtime is well known and documented.⁶

The relationship between chronic illness and trauma is complex. Many health care providers are focused on biomedical aspects of care without realizing that delivery of information and interventions to patients will either contribute or help subdue a stress response. Biological embedding of early experiences brings in the importance of epigenetic factors turning genes on or off. This does not mean a complicated supplementation regimen is the cure. Rather, providers need to educate and acknowledge the emotional dimensions associated with chronic illness. Patients with tick-borne illnesses typically experience extreme marginalization by medical professionals, based on their own bias or paradigm. While not every patient who believes they have Lyme disease has a persistent infection, they have chronic illness and over- or under-diagnosis does not result in a net response of improved health.

How to Begin?

Each of us has a process and after years in practice this often becomes mechanical and second nature. The complexity of Lyme and tick-borne illness and the multiple questions, requests, and desire for guidance from our patients are often the reasons for complex treatment plans. The effectiveness or importance of this is not being questioned here: it is rather the question of keeping up with evolving diagnostics to support overall assessment and the question of how to very simply address immunosuppression by targeting the most common obstacles to cure.

There is not one magical brand, product, drug or company that will be the best. We often seek something novel, creative and complex and sparkly, to be the most effective, best and the newest thing for helping our patients. The reality is industrialization, with all of its benefits, has also influenced diet, which has decreased diversity of the microbiota and microbiome over every generation,⁷ and placed synthetic materials and other components into our ecosystem, which is compounded by each individual’s perception of stress in their own environment. Adding sweeping antibiotic regimens for years (if unnecessary or misguided, however well meaning) will amplify these challenges.

1. Ensure you have appropriately identified whether your patient has a persistent infection. Observe your own bias, as well as the patient’s, and weigh the risk versus benefit of an aggressive regimen, perhaps initiating a trial of treatment for a shorter duration first (4-6 weeks).

2. Address the obstacles to cure without judgment and with practical solutions that meet the patient where s/he is at, using a harm reduction approach.

3. Address factors influencing the most restorative immune interventions: diet, hydration, and sleep. Simplify this (eat real food, adjust lifestyle to have less technology). This will calm the nervous system.

4. Resist the urge to intervene heavily: be mindful of the delivery of your information and interventions – the emotional dimensions of chronic illness are like a kaleidoscope, individual to each patient and continually changing.

5. Knowing your biases and identifying them will help when weighing risks versus benefit of evaluating testing, interventions, and reaching patients’ short- and long-term goals. Being “Dr. Informative” and running through a series of options for the patient to choose from can be dizzying in itself. Find out what is most important to the patient and begin the individualized program there.

Often the well-meaning bias of finding Lyme in patients who have been aggressively berated by other medical professionals can cloud judgment. Identifying as clearly as possible whether this is a potential root cause of persistent illness is key. The EliSpot with other supportive tests has eliminated at least some of the interpretation involved in assessing other tests available in the past, though is still indirect. Appreciating the overall impact of our ecosystem, industrialization, and emotional dimension of illness on our patients also suggests beginning with a re-introduction of microbiota diversity to our internal ecosystems. The goal is not simply to eliminate Lyme and associated illnesses; it is to create an internal terrain and ecosystem able to handle other pathogenic organisms that we either have not yet identified or have yet to find an appropriate intervention for.

This is not a dismal view of our evolution, rather a practical one. As I believe and discuss with patients, there is still thriving life on our planet, in our hearts, as eco-communities. The anxiety of trying to be healthy, removing toxins, or viewing what appears to be a dismal future will not set our patients up for success. What will, is what will bring calm, which can begin with these simple steps. Patients are intelligent and resourceful and often will have adopted some changes already. It is our role to help identify bias, help identify with the best available assessments whether Lyme and associated infections are persistent, and how best to address the foundation of immune benefit for our patients. Along with each patient’s short- and long-term goals, this will create a foundation, if further aggressive treatments are implemented, but will also help support patients to prevent other chronic illnesses in years to come.

References

1. Meriläinen L, et al. Morphological and biochemical features of Borrelia burgdorferi pleomorphic forms. Microbiology. 2015 Mar;161(Pt 3):516-27.

2. Meriläinen L, et al. Pleomorphic forms of Borrelia burgdorferi induce distinct immune responses. Microbes Infect. 2016 Jul-Aug;18(7-8):484-95.

3. Miklossy J, et al. Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis. Journal of Neuroinflammation. 2008;5:40.

4. Inam QU, et al. Effects of sugar rich diet on brain serotonin, hyperphagia and anxiety in animal model of both genders. Pak J Pharm Sci. 2016 May;29(3):757-63.

5. Krueger JM, Majde JA, Rector DM. Cytokines in immune function and sleep regulation. Handbook of Clinical Neurology. 2011;98:229-240.

6. Gradisar M, et al. The Sleep and Technology Use of Americans: Findings from the National Sleep Foundation’s 2011 Sleep in America Poll. Journal of Clinical Sleep Medicine : JCSM : Official Publication of the American Academy of Sleep Medicine. 2013;9(12):1291-1299.

7. Sonnenburg ED, et al. Diet-induced extinction in the gut microbiota compounds over generations. Nature. 2016;529(7585):212-215.

BIO

Dr. Aparna Taylor has a love of nature and medicine and strives to help patients find a healthy balance on this journey. Growing up in Thunder Bay, Ontario, she received her biology degree from Lakehead University then took some time to volunteer in hospitals in India, travel, and became a yoga teacher. After this gap year, she moved to western Canada where she completed her masters in muscle physiology and aging at the University of Calgary. While pursuing her PhD in molecular neuroscience, she re-awakened her passion for patient-centered medicine and became a naturopathic doctor.

One of her first patients in Thunder Bay inspired her to learn more about Lyme disease and she was introduced to ILADS. All of her experiences have provided tools to incorporate the principles of Eastern and Western medicine, yoga, and mindfulness to individualize regimens for each patient based on individual goals.  Most of her practice is devoted to guiding patients who have chronic conditions, infections, and tick-borne illnesses. She believes that fundamentally, a balanced approach that brings calm allows room for patients to heal.  She shares her passion for learning, medicine, and community by teaching at seminars, conferences and participating in research when she isn’t chasing and playing with her two young children and husband, all the while trying not take herself too seriously.