The Great Imitator
May is Lyme disease awareness month, so it feels like an opportune time to write about my experience with it. Before I dive in I want to acknowledge the controversy of this disease. I take a strong stance that goes against the conventional medical community and CDC’s beliefs of Lyme disease, and I want it to be clear that my stance is backed by research. I will include links throughout this post from reliable sources that I used to ensure accuracy. Educating people about this illness is really important to me because the CDC and most of the conventional medical community don’t recognize it as a chronic condition, and some medical doctors won’t recognize it at all. Most people have heard of Lyme disease, though too many mistakenly call it “Lyme’s” when there is actually no possessive form. I was diagnosed with Lyme disease 10 months ago, and have been going through a very difficult treatment ever since. I feel fortunate to be in a place right now where I do have the mental clarity to share about my experience, educate people about tick bites, and bring to light the signs and symptoms of this debilitating disease.
Growing up and into my early twenties debilitating sick days only occurred once or twice per year at most. I also had what is referred to as a “stomach of steel” — I could eat processed and refined foods daily and I could drink as much alcohol as I wanted to without experiencing any ill effects. In retrospect I think I probably lacked a great deal of body awareness. I lived life in a sympathetic state like most people do nowadays, and I’ve learned that that lifestyle came with a very steep price for me. My refined-food diet was 100% a result of my immature taste buds, and it certainly didn’t prime me for having a naturally healthy gut flora. Like most kids and teens, I didn’t think twice about how a daily toaster waffle and mac n’ cheese lunch would compromise my health in the long run.
I’m fairly certain that I got my tick bite exactly one year before my diagnosis while hiking in the White Mountains of New Hampshire. Earlier that year I had also traveled to Peru and contracted a parasite that I thought I effectively treated with a round of antibiotics, but I now know that wasn’t the case. I also spent a month in Israel with an educational backpacking group where most of our meals were based around refined carbohydrates, which fueled my dysbiotic gut flora. I could go on, but the one thing all of these variables have in common is that they greatly weakened my once very strong immune system. Because my immune system was in a compromised state when I got bit by that tick in New Hampshire my body was confronted with a war it was in no condition to fight.
Lyme disease is spread through the bite of an infected tick. According to the CDC, the black legged tick is the only tick capable of spreading Lyme; and it can only be found in the northeastern, mid-Atlantic, and north-central United States. This is not true. Lyme infected ticks are not limited to any particular geographical region; and though Lyme disease is the most common vector-borne disease, ticks may carry other infectious organisms (a.k.a. co-infections) as well. The chart below depicts what tick species are known to carry specific co-infections.
Lyme disease is commonly referred to as “The Great Imitator” because the symptoms it causes can often be associated with other illnesses. Many people go years before getting diagnosed with Lyme, and instead find themselves with misdiagnosis for other severe conditions such as lupus, multiple sclerosis, alzheimers, etc. Lyme disease manifests differently in each individual, and the symptoms also vary depending on if any co-infections were also contracted from the tick bite. One of the most common misconceptions in regards to Lyme disease is that you will experience a bulls eye rash after getting bit by a tick, however research shows that less than 30% of people experience this rash — I am not one of them, and I don’t think I’ve ever met someone with Lyme who had that rash.
Common Symptoms of Lyme Disease
This list is by no means exhaustive, it is merely a snapshot of the burdensome effects caused by this illness. Unfortunately, these symptoms can be tied to other more widely accepted diseases as well, which is why Lyme gets shoved under the rug so easily. The first medical professional I saw was an allergist, who told me I likely have IBS. The second medical professional I saw was general practitioner, who ran tests for anemia and hypothyroidism. My labs all came back totally normal, so he then told me I’m probably just anxious and depressed — two symptoms I did not complain about during my consult.
I don’t mean to generalize when I talk poorly of the conventional medical community because I know there are MD’s out there who don’t fit this bill, but generally speaking conventional practitioners just don’t take the time to look deep enough. The nuances of chronic diseases in today’s world are unprecedented. I knew to get testing done elsewhere because I know someone with Lyme and they warned me about this, but most people don’t know. It is engrained in us to trust the people in the white coats when it comes to our health, but it’s time to take them off of an all-knowing pedestal because many of them are not doing their job.
Another unfortunate aspect of Lyme disease is how wildly inaccurate the testing is. Conventional practitioners follow a two-tier testing process when Lyme is suspected. The first test is a type of enzyme immunoassay (EIA) test, which is typically the enzyme-linked immunosorbent assay (ELISA). According to the CDC, EIA testing is “designed to be very ‘sensitive’, meaning that when they are used properly, almost everyone with Lyme disease will test positive.” However, leading researchers in the field have reported that the ELISA test is falsely negative in roughly 60% of patients. If the ELISA comes back negative, conventional practitioners will not continue to the second tier of testing regardless of a patient’s symptoms.
The second tier of testing includes an immunoblot test, which tests for antibodies the body makes to ward of certain antigens that are part of the Borrelia burgdorferi bacteria. The immunblot can detect two different classes of antbiodies, IgM and IgG. According to the CDC, a positive Lyme test must follow the below criteria:
The immunoblot, like the ELISA, is a very limited test because it only tests whether the body is responding to Borrelia burgdorferi specifically. There are thousands of strains of Lyme bacteria, so only testing for one of them is not very thorough. Additionally, the spirochete bacteria don’t live in the bloodstream. Rather, they find hiding places throughout connective tissues in the body and form cyst-like formations around themselves so the body doesn’t recognize that it needs to attack.
If you suspect you or a loved one might be suffering from Lyme, I highly recommend seeking out a Lyme literate MD or ND. Doctors experienced with Lyme disease know the unreliability of the testing approved by the CDC, and will use alternative testing to yield more accurate results. Specialty labs, such as IgeneX, have the ability to test for more strains of the Borrelia bacteria. Additionally, many people have a lot of success with polymerase chain action assay (PCR) testing. From my understanding, PCR testing is incredibly accurate if/when results are captured. Unfortunately, it’s not easy to know whether or not you will capture infectious pathogens in the urine, but when a result is captured it is incredibly accurate. Most Lyme literate doctors will clinically diagnose Lyme, and only use testing to support that diagnosis — not to prove it.
Treatment for Lyme varies and is dependent on whether any co-infections are present, the stage and severity of symptoms, the age of the patient, among other factors. Unfortunately there is no “cure” for Lyme disease, the goal is to achieve remission. The most common treatment for early stage Lyme disease is a 14–21 day course of oral antibiotics, typically doxycycline. However, both in practice and in the scientific literature, it has been observed that a significant number of patients do not return to their pre-Lyme health with short courses of antibiotics
Herbal protocols and intravenous (IV) antibiotics have also been used to treat Lyme, but like oral antibiotics their effectiveness is uncertain and varies by person. Other alternative treatments for Lyme include hyperbaric oxygen therapy, ozone therapy, essential oils, silver hydrosol, stem cells, hypothermia, and the list goes on. When it comes to choosing a course of treatment, making a plan based on your individual situation is key. I have been on oral antibiotics for the past 9 months, and that is a decision I grapple with daily because it goes against my health and wellness philosophy. I am now at a turning point where IV antibiotics are likely the next move in hopes to make the burden on my intestinal tract less debilitating. It’s a personal choice that you should make with your loved ones and your practitioners.
Unfortunately, Lyme treatment beyond the 2–3 week dose of doxycycline is not covered by insurance and therefore gets quite expensive. The financial burden of treating Lyme is disastrous for some families, not to mention many people with Lyme aren’t able to continue working and supporting themselves. Treatment itself is a full-time job, and I commend the humans who continue to support themselves and their families during the process.
The Herxheimer Reaction
Discovered by dermatologists Adolf Jarisch and Karl Herxheimer in their studies of syphilis — another illness like Lyme whose bacterium is a spirochete. A Jarisch-Herxheimer reaction is an adverse response to toxins released by bacteria killed by antibiotics or herbs. In the case of Lyme disease, antibiotics sometimes kill spirochetes faster than the body can eliminate them. This buildup of this toxic waste can make the patient feel much worse before it makes them feel better; their symptoms increase until their bodies can expel the dead spirochetes. The only upside of the Herxheimer reaction is that you know your treatment is working.
This is namely why a consistent detoxification routine is vital throughout Lyme treatment. Common detox methods include infrared sauna, green tea, epsom salt baths, lymphatic massage, rebound therapy, colonics, and supplemental support to promote the body’s natural detoxification mechanisms.
It seems my nutrition philosophy is applicable to Lyme disease, too. There is no absolute preventative measure you can take to ward off Lyme, but erring on the side of caution is a small price to pay. If you go camping/hiking, mow the lawn, have a picnic in a grassy field, or participate in any other outdoor activity ALWAYS check yourself, your family, and your pets for ticks when you get home. Throw your clothes in the dryer on high heat for 10–15 minutes as well to kill off any ticks that might be lingering on your attire. If you do find a tick on you, be sure to remove it carefully using the steps below:
My main tip to prevent Lyme disease is to make diet and lifestyle choices that build up your immune system. If your immune system is compromised and your detox pathways are backlogged at the time of your tick bite, you will likely get hit much harder with debilitating symptoms. Prioritize good sleep, eat a diet filled with whole foods, keep stress levels low, and use supplements (i.e. vitamin D, CoQ10, adaptogens, turmeric, and probiotics) to support optimal cellular function. Always consult a healthcare practitioner when adding a new supplement to your regimen, and I can’t stress enough how important it is to opt for quality over quantity when shopping for supplements. Stick with professional grade brands to ensure quality and bio-availability (ask your practitioner about this), and avoid Amazon like the plague because counterfeit supplement suppliers are too hard to distinguish from the real deal.
Permetherin on clothing, shoes, and outdoor gear is a must for outdoor adventures. When it comes to using bug repellent on my skin, I typically opt for DEET-free products; but that’s a personal choice I make based on my values and the environment. Here are a few of my favorite tick repellent products:
Additionally, The Global Lyme Alliance has partnered with Manus Bio to create an environmentally friendly tick repellent. It’s not on the market yet, but I imagine it will be a pretty remarkable product for Lyme disease prevention. They are designing it to not only repel ticks, but also kill them within seconds if they attach to your skin.
People with Lyme are often misunderstood because they don’t appear to be “sick” within the confines of most peoples’ rigid definition of the word. We don’t have runny noses and raspy voices that fade in a week or so. We don’t have broken limbs that can be healed with the structure of a cast. We have a disease that inhabits and circulates every part of our body — our blood stream, our organs, and our soul. It’s hard to be understanding when you haven’t experienced what it’s like to live with a chronic illness, and our fast-paced society makes a lot of us feel lesser than our high-functioning peers.
At some point most of us get told that our symptoms are purely psychosomatic, which adds to the psychological burden and leaves us feeling defeated. We constantly have to explain that our fatigue isn’t cured by an afternoon cat nap, and that straying from our medically restrictive diet could take weeks to bounce back from. We have to justify our pain when all of our labs and testing appear perfectly normal to the conventional eye, and even though we have “good” days it does NOT mean we are back to “normal” — healing is not linear.
We typically lose a lot of friends in the process who can’t comprehend what we’re going through and get fed up when we constantly ask to reschedule. It’s easier for us to stay home than to travel or be social, and it’s tough to feel left out all of the time. We also feel overwhelmed with guilt for the imbalance of giving and receiving between our loved ones — we don’t have much to offer in return for unwavering support, and that makes us feel like a huge burden.
Lyme disease is an invisible kind of sick, and living with an invisible sickness takes a toll. It takes you atop valleys so high you think you aren’t sick anymore, and then it leads you through ravines so dark you can no longer see the light at the end of the tunnel. The tears shed from this illness could form a small lake deep enough to drown in, and unfortunately some people do.
Lyme disease needs to be common knowledge — it is the largest growing epidemic since AIDS, and still some people won’t recognize it for what it is. Testing needs to get more accurate, treatment needs to get more affordable, and the medical community at large needs to get with the f*cking program already. Excuse me for my rash language, but there’s just no way to sugar coat the frustrating controversy of this disease.
The people in my village make my world go round, and they make my invisible sickness feel valid and a hell of a lot more bearable. Just how I can’t battle this disease alone, I can’t spread awareness alone either. It is my inherent nature to be independent in every sense of the word, but recognition for Lyme will not be achieved from my voice alone. There are many high-profile figures fighting for acknowledgement of Lyme (the Hadid family, Avril Lavigne, Ally Hilfiger, etc.), and even their more notable voices don’t carry enough sway.
It’s not easy for me to ask for favors, but here I am — I’m asking anyone reading this to share about Lyme in whatever capacity feels right. Copy and paste this link on Facebook, text it to a friend, email it to your family members. Open up the conversation about Lyme with as many people as possible; odds are they know someone who is dealing with it, but “don’t know much about it”. Tell the members of your village, tell your co-workers, tell your neighbors, tell the adventurous folks you meet on trails, tell your acupuncturist, tell your dental hygienist — tell everyone you can.
We all have difficult seasons. Silence in suffering doesn’t support the reparative process, so I appreciate you for being here. I extend my arms to anyone also battling Lyme or other illnesses, invisible or not. I see you, I’m rooting for you, and I am here for you.
Originally published at https://www.nativeandwell.com on April 30, 2019.
The Great Imitator
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