The Many Faces of Chronic Lyme
What is Chronic Lyme disease?
Why is it so different for different people?
Chronic Lyme, by any other name...
What are some steps to do if I think I have it?
“Jane” tells me she has experienced intense brain fog, fatigue, reflux, joint pain, depression and anxiety headaches, painful periods and congested sinuses. “Bob” experienced the sudden onset of intense fatigue, difficulty with word finding, pain in his lower body and hips. “Ellen” has multiple chemical sensitivity, insomnia, fatigue, chronic skin rashes and anaphylaxis, chronic UTI’s (urinary tract infections) and POTS (postural orthostatic tachycardia syndrome). What do all of these people have in common? A diagnosis of “Chronic Lyme.”
What is Chronic Lyme?
In its acute (recent) stage, Lyme is due to a recent tick bite. The person experiences flu-like symptoms, muscle aches, malaise and brain fog. As conventional medical practitioners would tell us, it is a limited infection that responds to antibiotics (usually doxycycline, which should be prescribed for a minimum of a month).
It can become chronic in some people, even after antibiotic treatment. As plenty of research has demonstrated, the Bb organism and its effects are not simply eradicated from the body after antibiotic treatment. Bb can live on in immune-evading and antibiotic resistant cyst forms, live inside our cells and create long term disruption to our immune system, cellular function, nervous and endocrine system (hormones) health.
Even then, a lot of people will not come down with debilitating versions of Chronic Lyme but will still live on, just dealing with its dysregulating effects. Maybe they suffer through life with migraines, or insomnia, or aches and pains, or have periods of unexplained fatigue from time to time. But still manage somehow to live a life, or a version of their life at least.
Chronic Lyme happens when the ‘perfect storm’ of dysregulating variables occur in someone. Our bodies are actually remarkably resilient, and can soldier on or even heal from numerous threats and attacks. But after too many, any body will not be able to maintain the balance necessary for good health.
When a person accumulates too many dysregulating variables, they end up with Chronic Lyme.
The variety of these variables is why Chronic Lyme can look and respond so differently in each of us.
Why is Chronic Lyme different from person to person?
The combination of Bb + numerous other dysregulating variables + each individual's genetics and epigenetics leads to different expressions of illness and response to therapies. What are these other variables? As of 2020, this is a pretty thorough list of the major other variables we look for and treat to heal from Chronic Lyme. Certainly the coming decades will reveal even more of which we are not yet aware.
Coinfections. What has been hereto referred to as tick-borne coinfections, has now expanded to include the entire “pathobiome.” The pathobiome includes not just other infections that a tick may inject into our body, but all other microbes that exist in and on us. Mostly our immune system is able to manage them. But if you get too many under the right (or wrong!) circumstances, they lead to chronic inflammation and illness
What is the pathobiome?: The pathobiome is the sum total of burden that potentially harmful microbes pose to our immune system. It incudes bacteria, viruses, parasites, fungi and more types of organisms like RNA and bacteriophages, that we are only just beginning to discover. It is our immune system’s job to balance both tolerating these innumerable microbes that live with us and keeping them in check. An intricate balance that fails when we experience Chronic Lyme and other chronic inflammatory disorders.The gut microbiome. Speaking of trillions of microbes...in our intestines lives ~100 trillion microbes and 75-80% of our entire immune system, Regardless of what else could be causing havoc in a body, getting the 80% of the immune system in your gut is foundational to whole-body health and inflammation.
Nutrients. Our body needs nutrients from food (including vitamins, minerals and phytonutrients) to run all of the innumerable chemical reactions that allow us to exist. Lacking nutrients, which is fairly ubiquitous in our modern American diet, is like trying to run a computer on software missing key code. You’ll end up with some very poorly running programming. Add to this an inflamed body under extra burden from microbes, and you’re very likely to get a system that crashes.
Hormones. Also known as the endocrine system. This includes our sex hormones (estrogen, progesterone, testosterone for starters), adrenals (cortisol) and thyroid, as well as a lot more. They play significant roles in regulating our energy, cognitive function, fertility and libido, immune system, sleep, body temperature and mood, for starters. Interestingly, Chronic Lyme often rears its head at key hormonal transition periods such as menopause/andropause and puberty.
Toxins, This includes both heavy metal and chemical toxins. Having either a high toxic burden or inadequate ability to both process it out of the body and negate its bad effects adds to the bonfire of inflammation of chronic disease.
Mold (also known as mycotoxin illness or sick-building syndrome) can alone make people incredibly sick. Its symptoms can look a lot like Chronic Lyme and a person can certainly have both at the same time.
Trauma. Trauma causes immune, hormone and nervous system dysregulations that create chronic health problems. My start was in stress research, where we studied stress’s effects on the immune system, hormones, inflammation and behavior. Early life or even intense later life stress and trauma is a major contributing variable for the development of chronic health issues.
Conversely, living with a chronic health issue is trauma. For some, even torture. It is an unfortunate double-edged sword for illness to both instigate and perpetuate the physical effects of trauma in the body. All complete healing paths will require healing the effects of trauma in the body. (A great book to understanding and starting this process is Bressel Van der Kolk’s “The Body Keeps the Score.”)Stress. Just because you haven’t had significant trauma also doesn’t mean that stress isn’t affecting your health. The long term daily toll of modern life and responsibilities can be enough to exacerbate immune dysregulation.
Sleep. Whether due to the effects of infection and inflammation on our brain’s regulation of sleep, or due simply to stress and pain, sleep is often disrupted in Chronic Lyme. Sleep is mandatory for healing. Lack of sleep alone would be a singular cause of severe physical and mental health problems.
Deconditioning. Another double-edged sword of Chronic Lyme is both the inability to maintain regular daily activities or exercise, and the need to respect the body’s limits. Pushing past these limits even for a single event can leave Chronic Lyme patients suffering for days, weeks or months. However, the deconditioning from such long-term inactivity also perpetuates physical maladaptation that exacerbates the health condition. We try to find even the smallest amount of Qi gong or breathing exercises to keep some circulation and these neuro-muscular stimulation awakened.
Chronic Lyme, by any other name...
Of the patients who are treated in my clinic for Chronic Lyme, some come in saying they have it and I need to help them understand that it could also be any number of other variables we need to identify and treat. Others come in with other health issues, and I have to convince them that we need to test and treat for Lyme and other possible (co-)infections. Microbes play a major role in inflammatory disorders and immune dysregulation in our bodies and infections or less-pathogenic microbes triggering a dysregulated response in our immune system are a primary contributing variable to numerous conditions.
The following conditions may in part or totally be caused by microbes such as Lyme and other tick-borne infections:
Autoimmune disease (MS, Lupus, IBD, RA, MG...)
Fatigue (usually unexplained, severe)
Insomnia
Migraines
Depression and anxiety
Multiple chemical sensitivity (MCS)
Chronic Fatigue Syndrome (CFS)
Fibromyalgia or myalgic encephalomyelitis (FM/ME)
Postural orthostatic tachycardia syndrome (POTS) or other autonomic dysregulation disorders
Mast Cell Activation Syndrome (MCAS) and histamine intolerance
“Pain syndrome” and migratory pain.
Dementia, Alzheimer’s and other cognitive deficits
If you have a chronic health condition, we almost always need to consider infections as a possible underlying cause.
What are some steps I can do to start healing from Chronic Lyme?
Healing from Chronic Lyme almost always requires working with trained, Lyme literate and Functional medicine practitioners. But there is so much to do to both set the stage for healing and get the most out of treatment processes. These include:
Eat a nutrient-dense, whole-foods diet. No processed foods, sugar, chemicals. Lots of vegetables (some do better on raw, others only them cooked in soups, stews and stirfries). You may need to do any number of medical diets such as GAPS, Autoimmune Paleo Protocol, SCD, low oxalate, low histamine, etc.
A chemical and mold-free home. Only use organic, natural and perhaps even unscented, body and cleaning products. Avoid or get rid of furniture and paint that could be off-gassing chemicals. Work with a qualified inspector to ensure that your home is free from mold (note that most mold inspectors are not trained to diagnose ‘sick-building syndrome” and that even being cleared by a local mold inspector does not rule out mold in your home. But it is a good start for the more obvious mold issues).
Decrease stress. Identify and eliminate or at least minimize the effects of stress in your life. This can be a big task that includes an honest evaluation of your work, relationships and living situations. Do what you can reduce stressful situations in your life and also support yourself through mindfulness practices, meditation and counseling.
These steps often provide significant improvements for a lot of people. They won’t lead to total healing, but you also won’t be able to heal if you are eating a poor diet, living in a toxic environment and bombarded by uncontrollable stress, no matter the best Lyme and Functional medicine diagnostics and treatments.
Know that you can heal.
Healing from Chronic Lyme is a different journey for each person. Your practitioner needs to be trained both in the science as well as the art of working with each individual person, physically and mentally. And each person dealing with Lyme needs to be on board and committed to this process to heal.
But know that you can heal. Don’t stop fighting for the health that is your right and your natural state. With this mindset, you will find the help and answers you need to heal from Chronic Lyme and chronic illness.
