Livin' La Vida Lyme--Part 1
I realize there are probably thousands of blogs about Lyme Disease from many authors more knowledgeable and qualified than myself. However, I am a firm believer that some of the best medical advice comes from those who have personal experience with the malady. So if my Lyme story and treatment protocols can help even one Lyme struggler out there, it's worth sharing.
My goal for part one of this post is to give a basic overview of what Lyme Disease is, how it's typically contracted and to share my personal story. In part two I will share more of my personal treatment protocols and various items that have helped me manage symptoms.
What is Lyme Disease?
Let me start with a definition for anybody out there who isn't quite sure what Lyme Disease (LD) is (as I used to be). According to Lymedisease.org a grassroots organization dedicated to LD advocacy, education and research, LD is a bacterial infection caused by a corkscrew-shaped bacterium called Borrelia burgdorferi. LD is described as "The Great Imitator," because its symptoms are similar to many other diseases (Fibromyalgia, Chronic Fatigue Syndrome, Rheumatoid Arthritis, Lupus and more). LD can affect any organ in the body, including the brain and nervous system, muscles and joints, and even the heart. Scary, right?
How is Lyme Disease Treated?
Now that I have frightened you over how much damage this small bacteria can do to your body, you probably are dying to know how one catches it so you can do your best to prevent it.
LD is primarily transmitted by deer ticks, and on the West Coast, black-legged ticks. Deer ticks are typically found in wooded and grassy areas and can be all over the country, despite popular assumption that they are primarily on the East Coast. While lucky victims of an infected bite will see a bulls-eye rash to indicate infection, fewer than 50 percent of all LD victims recall seeing a rash (myself included). If you DO find a rash, go to your local doctor RIGHT AWAY to get on antibiotics!
If you are like me and do not find any rash, LD will show itself in a range of strange and varied symptoms. Upon noticing symptoms like numbness and tingling, fatigue, muscle and joint aches, headaches, weakness, flu-like malaise, etc., find a doctor who believes in and has expertise in LD (called Lyme-literate doctors). Lyme-literate doctors are the best resource to go to even if you only suspect you might have LD because they understand that LD blood tests are not the most reliable and they will treat and diagnose you primarily based on symptoms.
Because I am not a doctor, I want to refer you to the International Lyme and Associated Diseases Society (ILADS) website for any further information regarding LD. There you can find details about symptoms, testing and even find a Lyme-literate doctor near you if you think you might be infected.
How Do You Avoid Lyme Disease?
NEVER LEAVE YOUR HOUSE! Just kidding. Try to stay away from tall and grassy areas (especially around dawn and dusk), and to cover your body as much as comfortably possible when going on hikes/into the woods. It's also important to WEAR A TICK REPELLANT OF SOME KIND! Deet is high in chemicals, but there are a lot of good essential oil mixes you can find on Pinterest to make a natural tick repellant. And most importantly be aware of your body and check regularly for ticks! (They like to conveniently hide in the crevices of your body or even your scalp.)
My Story
I have loaded you with a lot to think about, but I do want to share a cliff-notes version of my LD story. To this day, I have no clue where or when I was initially bitten by a tick, but I spent a LOT of time hiking and running in grassy or wooded areas with no care or thought whatsoever to ticks. So my lack of care combined with living in one of the most Lyme-endemic areas of the country (Northern Virginia) made me a prime candidate to contract LD.
It all started back in February of 2016 with chest pains. Chest pains, mistaken at the time for anxiety, slowly turned into a stiff neck, numbness/tingling in my hands and eventually pain in my arms and the soles of my feet. By May, I could not walk comfortably without feeling stabbing pains in my feet and legs. I remember going on a family trip to Cancun, Mexico, during the first weekend in May and thinking that something was seriously wrong. We went for some hikes and I couldn't walk more than 15 minutes without having to stop for breaks. The bones in my hands and arms felt like someone was chipping at them with an ice pick and I felt an all-encompassing weakness that seemed to worsen each day.
Within this three-month timeframe, I received physical therapy for my neck, nerve testing and an MRI from a neurologist and saw a rheumatologist before getting tested for and diagnosed with LD (which isn't really that long to go undiagnosed in the LD community). On May 15, 2016, I began the grueling marathon that is LD treatment.
Since my official diagnosis in May, 2016 (where I miraculously tested positive), I have received treatment from two different Lyme-literate doctors and am on a constantly rotating series of antibiotics, herbs and supplements. Every three months or so my symptoms seem to change up--just as one symptom starts to fade, a new one appears. For the first year and a half or so of LD treatment, I was pretty much handicapped. I couldn't walk without limping and some days my legs would give out on me and I couldn't walk at all! Sometimes my throat would feel like it was closing in on me and I would start gagging for no reason.
Other times I would get migraines that would last a few days. The muscles in my back and legs would ache and burn and sometimes it would feel like I was stepping on crushed glass when I walked around. I would get dizzy spells and lightheadedness, heavy fatigue that no amount of caffeine could fix, ruthless insomnia that would keep me awake sometimes all night long, hot flashes, anxiety attacks, nausea and memory/concentration issues. The worst part of all was trying to keep up with my job and take care of myself throughout the process!
Honestly if it wasn't for amazing people in my life to help take care of me (you know who you are) and an incredibly understanding boss who let me telecommute as often as I needed to, I probably would have quit working a lot sooner than I did. But with incredible support and God's grace, I managed to stay working for the first almost year and a half of LD treatment. But eventually, as I kept pressing on to keep up with the demands of my job, my body grew significantly weaker and my symptoms, while improving in some areas, were increasing in other areas and it became nearly impossible to keep up with everything. After exhausting all disability options my employer offered, I quit my job in September, 2017.
Quitting my job has been one of the hardest choices of my life but it has also been the biggest game changer in my healing process. In the past five months that I have been out of work, all my energy has gone towards treatments, following the recommended diet, resting and even physical therapy to now work on rebuilding my strength.
I feel my body growing stronger and more energized, my mind is sharper and I don't need nearly as many painkillers as before. While I still have many physical limitations and have a decent road of healing to go, I only suffer with a handful of the symptoms listed above now and in considerable less intensity. In part two of this post I will share more details regarding treatments and some of the most significant tips/supplements that have made the biggest difference in managing symptoms.
I hope this post has not been overwhelming or discouraging. My goal is to create healthy awareness of LD so you can protect yourself as you go outside this Spring. Even though LD has changed my life, I have never once regretted spending so much time outdoors and do not believe the solution is to live in fear and never go hiking! Be AWARE of the threat and CAREFUL to inspect your body regularly. If you have any questions about LD or my personal story, leave a comment below!
Resources to check out for more information:
http://www.ilads.org/
https://www.lymedisease.org/
*All images, unless labeled as my own, are taken from Google and I do not own the rights to any*