There is a crack in everything. That’s how the light gets in. -Leonard Cohen
There are times when asked how I’m doing and I slowly come out with “good, but I have chronic Lyme disease.” I am aware that for most, my reality means absolutely nothing, though the word “disease” occasionally has a degree of impact. My intent is not to be alarmist. On the contrary, mostly I come forth with information to justify for myself why I seldom feel whole. I believe that by putting my story down on paper there will be some sort of cathartic relief and maybe, just maybe, this effort will resonate with others who have struggled.
Symptoms of Lyme disease are caused by stealth bacteria manipulating the immune system to generate inflammation. The bacteria invade tissues directly and live inside cells. Inflammation breaks down tissues and allows the bacteria to access vital nutrients. This causes a host of symptoms including extreme fatigue, brain fog, pain, and arthritis. Ticks are the culprits that carry the bacteria, Borrelia burgdorferi, though there are various species and strains of Borrelia, which is transmitted to a susceptible host via a tick bite. The Borrelia microbe then adapts to the host, fools the host’s immune system enough to persist in low concentrations, waits for another tick to come along, spreads to the new host, and then does it all over again. In short, every tick bite is an opportunity for tick-borne microbes to infect and colonize a new host. [1]
[1] There are numerous controversies surrounding the topic of Lyme that include, diagnosis, treatment, and the evidence of stealth microbes. Dr. Steven Phillips, MD, a clinician and expert on Lyme and other chronic diseases, introduces readers of his website to “blebs.” He states, “Blebs are like microbial dandruff, or more aptly put, like decoys. They are small particles that are shed from the surface of both Lyme and bartonella. To the immune system, they appear the same as the intact organism. In the case of Lyme, they have been more researched, as there has been very little good research in bartonella. I consider it likely that the mechanisms demonstrated in Lyme blebs are similar in bartonella blebs. They occur as part of a microbial stress response and induce immune dysfunction in the host by causing excess and abnormal stimulation which eventually results in anergy (failure of the immune system to properly recognize the infection). I believe that blebbing can occur during a Herxheimer and then again transiently upon discontinuation of antibiotics. If blebbing does occur upon cessation of antibiotics, it provides clinical evidence that the infection is still present, even if symptoms subsequently settle down, which they usually do in about a week or so after blebbing begins.”
In June of 2019 my daughter and I went to Italy. What had all the makings of a trip made in heaven (what could be better than an opportunity to travel with my kid?), turned out to be another kind of reality. I did my best to keep up with our ambitious itinerary, as well as not ruin my daughter’s experience, but mostly I found myself labored by pain, fatigue, and frequent urination, with no clue as to what was happening.
The fall of 2019 a more drastic experience ensued that started with a visit to an integrative care doctor to explore the whys of my exhaustion. He suggested lab work and purchasing a sleep monitoring device. A few weeks later I received a call from his office stating that my labs showed antibodies for the Epstein-Barr virus and Rocky Mountain Spotted Fever. The latter is a tick-borne disease caused by the bacteria rickettsia. I was put on a strong antibiotic, with nothing additional said.
Within days I became violently ill. I experienced vomiting, diarrhea, tinnitus, vertigo, extreme pain, and one urinary tract infection after another. I should qualify the urinary tract comment since on more than one occasion the urgent care clinic said I did not test positive, but that they would treat me as if I had the infection. This proved to be a blessing but did not address the whys. I did, however, have Candida.
I contacted my integrative doctor once again and he agreed I should go off the antibiotic. He then prescribed another antibiotic and said if systems persist, I should see a pelvic floor gynecologist. It was then that I decided to visit my primary care doc.
I recall the wait to be seen and feeling as if I was having an out-of-body experience. Nothing I was going through made sense. When the doctor arrived, I began telling my story. I’m certain I sounded confused and possibly a bit crazy, since she immediately had me stand and do a walk-in-a-straight-line test, which I failed due to vertigo. The test was demoralizing since 1) it was never explained why such a test was necessary; and 2) I had the impression she thought I was a substance abuser. I left the doctor with referrals to an oncologist, allergist, neurologist, and infectious disease provider, all of which I followed through on. It was now five months since the mother-daughter trip.
The oncologist concluded I had a low white blood count, complications of which can lead to a host of problems; the allergist concluded I was allergic to peanuts and wheat, the latter of which I already knew about; and two MRIs and one carotid Doppler test later, the neurologist concluded that I had a Pituitary gland cyst and one artery with plaque buildup. And finally, the infectious disease specialist concluded I had Lyme Disease.
Although I didn’t know it at the time, the best use of antibiotics in Lyme occurs during early-stages (within 30-45 days), and/or with severe involvement of heart or brain, or when there is suspicion of a highly virulent microbe such as Rickettsia, or when nothing else works. The usefulness of antibiotics is limited by their inherent toxicity. Often antibiotics must be discontinued because toxicity builds up, sometimes even within a few weeks. It becomes a race: Can the pathogens be killed off before the toxic effects of the antibiotics catch up? Typically, not with stealth pathogens, such as those associated with Lyme, which respond very slowly to synthetic antibiotics. The survival strategy used by stealth microbes makes them resistant to antibiotic therapy. Sure enough, the infectious disease doc put me on antibiotics. It was now eight months since the Italy trip.
I voraciously began reading about Lyme and at one point, came across the work accomplished in the field by Dr. Bill Rawls. A GYN by trade, Dr. Rawls contracted Lyme disease decades ago and when up against treatment shortcomings of a conventional medical system, he did a U-turn and became a specialist in the treatment of Lyme using herbal therapy. From here, he started the company and herbal protocol, Vital Plan. Though some people do overcome Lyme disease with antibiotics, results aren’t consistent enough to be considered reliable. It is my understanding that to date, there are no clinical studies that have shown benefit from long-term antibiotic therapy for chronic Lyme disease. Dr. Rawls began experimenting with herbs after reading Stephen Buhner’s book, Healing Lyme. As his health continued to improve, he immersed himself in the study of herbal therapy and studied herbal traditions from different cultures, as well as the accumulated science and research available. It became apparent that herbal therapy was a perfect fit for suppressing the stealthy microbes associated with chronic Lyme disease, hence the herbal protocol via the business Vital Plan was conceived. This is the plan I adopted.
Within 6 months I was feeling much better and so much so, I started to believe I could discontinue most of the herbal supplements and enter back into life as I knew it, pre-Lyme. It was now almost 18 months since our trip.
With refinement, I started easing off the extensive herbal treatment I had been on and 4 months later I felt completely depleted. My fatigue was worse than ever and any hope I had for recovery tanked. Looking back, I should have extended my investment in adaptogen herbs. Adaptogens are plants and mushrooms that help the body respond to stress, anxiety, fatigue, and promote overall well-being. I’m convinced my cellular health was still compromised. To add insult to my injured body and mind, it was discovered that the home I live in had mold in the air conditioning unit above where I sleep, as well as in the basement. Ever grateful to my partner for taking matters seriously, he hired a mold mitigation specialist and within a month the hot spots were addressed. However, I was unsure the extent of damage mold and environmental toxins had contributed to my already compromised body since I still felt awful.
Fast forward a few additional months and I landed on a functional medicine group near my hometown. After challenges locating the right provider (for me) in the practice, I was assigned a Provider Assistant who had experience treating Lyme patients. Many expensive labs later, I was put on an aggressive liver detox protocol, along with supplements to rid my body of environmental toxins. The logistics associated with detoxing are inherently taxing, due to the imminent risk of removing vital minerals from the body, along with the toxins. Therefore, I had to conduct a daily dance with my supplement and liquid routines, which required middle-of-the-night pill taking. This went on for months, followed by three- to four-month breaks, followed by additional months of detoxing. Rinse and repeat were my mantras for over a year. It was nearly three years since the trip with my daughter.
The philosophy my provider embraced was one of segregating approaches to treatment, so each could be explored, and wellness determinations made. I saw the logic in this, but much later in the relationship felt strongly that because the body (and the disease) does not operate in a vacuum, a more holistic approach to treatment needed to be deployed. Recently, this individual retired, and I was assigned a new provider who I met with for the first time several weeks ago.
After reviewing my latest labs which showed significant histamine numbers, I was told that my symptoms may be due to biofilms. I had read about biofilms but had not initiated discussion about them previously. Biofilms are colonies of microbes. They chiefly contain bacteria, but biofilms can also include fungi and protozoa. Protozoa are microscopic, one-celled organisms that can be free-living or parasitic in nature. They can multiply in humans, which contributes to their survival and permits serious infections to develop from just a single organism. Biofilms form anywhere there is moisture and a surface. In other words, everywhere — including many surfaces inside the human body. The ring inside your toilet bowl and plaque on your teeth are examples of biofilm! Anyway, while this “aha” moment I had with new provider Silvia gave me hope, I have since read that most of the symptoms associated with chronic Lyme disease aren’t consistent with biofilm diseases. Biofilms cause localized symptoms primarily by damaging the surface they adhere to. Symptoms of chronic Lyme disease are systemic. Regardless, time will tell, and I am currently waiting on the results of a “hypercoagulability” panel to see if I have a genetic predisposition to decreased degradation of fibrin clots from biofilms. If results are such that I have this genetic predisposition, I will be given Lumbrokinase Enzymes, which are a blend of fibrinolytic enzymes that assist the body in clearing away fibrin, clots, and biofilms.
Note that in the 3.5 years since the trip with my daughter I have had two instances where I discovered multiple deer ticks on my body. About the size of a poppy seed, deer ticks can be difficult to spot, as they tend to favor hidden areas of the body, such as the armpit or groin. Both instances were after hiking without tick spray. One was 3 months after our trip, in September of 2019, and the other was one year later, in the fall of 2020. I have no remembrances of tick bites prior, or since.
I was diagnosed with a positive Rheumatoid Arthritis factor in 2012. RA is a chronic inflammatory disease affecting the lining of the joints and is thought to be a systemic autoimmune disease. Rather than follow doctor’s orders and tackle the disease through drug medication, I upped the nutritional content of my diet and revamped my daily exercise routines. But really, the point of bringing this to paper is to say that I have asked myself if the presence of RA increased my susceptibility to chronic (and now, late-stage) Lyme. I don’t believe so. While it’s true that symptoms of Lyme mimic those of other ailments, the two diseases are different. The basic risk factor for contracting Lyme is living, working, and playing in areas where there are deer and ticks. With that, some people develop arthritis post-Lyme, including inflammatory arthritis such as RA.
This recap cannot be fully realized unless I address the emotional/mental health repercussions of these last many years. The disease is an invisible one, in that many of us lead fully functioning lives. I have met my professional and personal responsibilities, with caveats on the latter. Because I am exhausted and in pain most of the time, it has been challenging to meet even the simplest of requests from my partner and friends. I deliberate over personal commitments and often decide at the last minute to abort plans. I find myself quick-tempered and low on patience, and when sleep is compromised, which is most nights, these outcomes are exacerbated. But perhaps the most unusual symptom is that I don’t often feel comfortable in my own skin. I am typically one who feels at home in social situations, can ignite discussion and engage freely, and leave events feeling satiated. In the last few years, I notice these characteristics change to feelings of awkwardness and anxiousness and am quick to be the first to leave engagements. I am in a heightened state of stress, or rather, I experience a stress response all the time, even when not actually feeling the emotion. I have numerous daily self-care routines I deploy to mitigate the effects and will continue adding new resources to my arsenal. I find this way of life draining and tragic, because it means I seldom seek opportunity for connections and new experiences, the flagstones of my former life. I do, however, gain pleasure in reading, nature, exercise, and my dogs, and feel gratitude for my partner and adult kids who continue showing up.
While my journey with Lyme is not over, I have proven to myself that education and dogged determination, the cornerstones of my approach to addressing the disease, are what is needed to continue finding a path toward wellness, albeit a redefined wellness. I am inspired by the many research scientists, medical providers, herbalists, writers, podcasters, and others, many of whom have been victims themselves, who have made it a priority to do what they can to demystify Lyme and its autoimmune manifestations and bring them to the forefront of discussions that can make a difference. There are unique treatments on our international horizon that may eventually gain traction in this country, such as dry fasting. I look forward to learning more about these innovations.
Finally, I have great interest in hearing your stories, particularly those associated with Lyme or non-Lyme autoimmune challenges. I consider us a community and as such, I think of you as a dear shadow friend. My email address is referenced below.
The CDC estimates that 476,000 Americans are diagnosed and treated
for Lyme disease each year.
If you, or someone you know, have any of the following symptoms, I encourage visiting a provider who is Lyme literate. Headaches; stiff neck; concentration/mood problems; sleep problems; heart palpitations; muscle pain; joint pain; fevers/chills/sweats/ lymph node swelling/pain; numbness/tingling; belly pain/diarrhea/constipation; bladder frequency/pain; tremors; or tinnitus. There is no minimum number of symptoms required to suspect vector-borne illness, since it often depends on how it impacts/disrupts daily living.
Mary Daniel is a Certified Integrative Nutrition Health Coach dedicated to the pursuit of good health for everyone. Through her business, Your One Precious Life, she partners with clients and communities and in the spirit of collaboration, paves the way for health transformations.
Interested in a free health consultation? Visit: www.youronepreciouslife.com or email mary@youronepreciouslife.com.
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