What I Believe About Lyme Disease
Lyme Disease. It’s everywhere these days. It’s the cool thing to have. The “it” disease of the moment. It’s dominating your social media feeds and the magazine covers. Every day it seems a new public figure is coming out as a “Lyme warrior.” Everyone’s buzzing about it but it’s widely misunderstood. We’re intrigued but view it with a general air of skepticism and even disdain, all the while it maintains a mysterious allure and hold on our collective conscious. If Lyme disease were a celebrity it’d definitely be a Hadid (literally). If Lyme disease were a cosmetic, it’d be a Kylie Jenner lip kit. If it were a Starbucks beverage, it’d be a pumpkin spice latte. Or maybe celery juice. It’s the latest, the greatest and the Instagram-iest but we don’t really know what to do with it and, hey, do we really even want or need it around?
Despite Lyme disease’s recent uptick (ha, see what I did there? A little tick related humor for you,) in celeb-fueled popularity, this is one trend you most definitely do not want to be a part of. It is notoriously difficult to diagnose, test for and treat. There’s acute Lyme disease and there’s chronic (or “post-treatment”) Lyme disease. It’s also currently a very controversial disease; many traditional doctors and most insurance companies do not believe in chronic Lyme or in treating Lyme beyond a standard round of antibiotics in the presence of a tick bite that produces the typical bullseye rash. Those who do believe in the chronic version of Lyme still take radically different approaches in treating the disease, from antibiotics, to herbals, to acupuncture, to ozone therapy, to hyperbaric oxygen, to IV infusions, to homeopathy, to energy medicine, and the list goes on, all of which result in a very long, uncertain, painful and sometimes debilitating healing process for the patient.
The purpose of this post is not to rehash all of the information that’s out there about Lyme disease or to prove to you that it exists. If you’re so inclined, a simple google search will do you. There’s tons of information out there if you put in the time to educate yourself and explore all the opposing viewpoints. Read all the celeb memoirs while you’re at it. What I want to do here is simply outline my personal beliefs and experiences with Lyme after being diagnosed almost three years ago. These beliefs stem from my own research, education, direct experience, consultations with MANY doctors and communication with other Lyme patients.
Summer 2015 in Long Island, New York - where Lyme disease has reached an epidemic level. This is when I began to realize how unwell I was feeling all the time and started my holistic health journey.
What I Believe About Lyme. 10 Things I’ve Come to Know:
1) Lyme disease exploits the body when it is weak already. If you’re chronically stressed, are emotionally drained, have sustained a trauma (recent or past), are fighting another illness or infection, deal with other chronic illnesses or autoimmune diseases, or are confronting anything else that would throw you out of whack, then Lyme has got the upper hand.
2) The patient will not always be aware that they were bitten by a tick and thus may have no idea when, where or how long ago they may have contracted the disease. A bullseye rash does not always occur.
3) Lyme disease is caused by a bacteria called borrelia. Borrelia is a spirochete bacteria, meaning it has a corkscrew shape. This makes it very easy for the bacteria to literally “drill” itself into your cells and tissues and very difficult for any treatment to dislodge and eradicate it (this one is not just a personal belief, but #facts. And not the alternative kind.)
4) Borrelia is a nasty little bugger that’s also a master shape shifter and expert at camouflage. If untreated, it can snuggle up and lay dormant for years until something triggers it to come out to play. Even when treated it can resist treatment and linger. Traditional doctors are often victims of borrelia’s hide and go seek tactics and are very likely to misdiagnose Lyme for many years. Blood test are not always reliable.
5) Lyme patients come in all shapes and sizes and suffer in a wide variety of ways. Some are debilitated while others are mildly inconvenienced. No two patients have the exact same set of symptoms or disease pattern. Some recover quickly, some take many years and some never recover.
6) There is more than one way to treat Lyme and the appropriate treatment depends largely on the patient. There is no one, “right” protocol. However, the best treatment is one that supports the whole person - mind, body and spirit - rather than just attacking and killing the disease.
7) As a Lyme patient, you will most likely need a good team of alternative medical practitioners in addition to traditional, allopathic doctors. You will also need to learn to advocate for yourself medically.
8) It is very likely that the treatment for Lyme will make a patient feel worse, even worse than the Lyme itself, before they get better. Treatment can be brutal.
9) In addition to the borrelia bacteria, other insect-born co-infections may be present, including, but not limited to, Babesia, Bartonella, Erhlichia and Rocky Mountain Spotted Fever. These are just as difficult to diagnose and treat as Lyme and come with their own set of unique symptoms and challenges.
10) It is possible to heal from Lyme. I still do not know if I believe it’s possible to be “cured,” as in to 100% rid the body of the bacteria. However, I believe it’s possible to be in remission and to experience an absence of symptoms.
Summer 2016 at Machu Picchu, in Peru, a few weeks after being diagnosed with Lyme and prior to starting treatment.
I am sure that this is the first of many musings on Lyme disease, as I am a reluctant member of this new and trendy club. I don’t follow any Hadids on social media, I’ve absolutely zero interest in any sort of Jenner lip, kit or injected. I have been known to juice a celery stalk or two and I can appreciate a seasonal latte but I don’t want to be a part of the Lyme disease hashtag. No, thank you. In fact, if I had to drink PSLs every day for the next year I’d do it if it meant saying goodbye to Lyme. I’d even listen to Avril Lavigne on repeat (Sk8er Boi, anyone?). But, it’s just not that easy. And what can I say? I’m a trendsetter.
