“My guess was correct. Your blood work shows you have Lyme disease,” says my doctor.
My brows furrow in bewilderment.
“What?” I respond. “That can’t be possible… I’ve never been bitten by a tick.”
Yep, that’s how it went in early February of 2018, when I was diagnosed with late-stage Lyme disease. Despite my inability to recall being bitten by a tick, I’d somehow contracted the disease. Today, I now know, while ticks transported by deer are the most common carriers of Lyme, other insects (mosquitoes, fleas or flies) and small animals (mice, rats, rabbits, squirrels) may also contribute to the spread of the disease. Growing up, I spent many summers in Wisconsin and was bitten by countless mosquitos and flies, so I’m presuming it was through one of those bites that I contracted the disease.
I’ll be honest – my first reaction to the diagnosis was of shock and then denial. I knew next to nothing about Lyme disease and to a certain extent, I was convinced my fatigue, nausea, light-headedness and insomnia were ongoing symptoms of my previously diagnosed autonomic disorder. However, it didn’t take long to realize I did in fact have late-stage Lyme disease, and I needed to come up with a game plan for healing my body.
Related: I Miss Living in a Healthy Body
There are many things I wish I had known after receiving my initial diagnosis, and I’d like to share a few of them with you. So if you’re looking for direction on what to do when you receive (or suspect) an acute or late-stage Lyme diagnosis, here are a few tips you may find helpful.
1. Everyone’s case is unique.
Unfortunately, there’s no one-size-fits-all or set protocol for treating Lyme disease. Factors such as the duration of the infection without treatment, the spread of the infection to different areas of the body or brain, as well as co-infections make it impossible for doctors to treat any two cases the same way. Treatment is a series of educated guesses and a trial of patience since most protocols take at least six months to see improvements. I’m often asked about my treatment protocol, but please understand you’ll need to find the treatment that works best for you.
2. Find a doctor that feels like a good fit (ideally a LLMD).
A LLMD is a Lyme-literate medical doctor who has trained with the ILADS (International Lyme and Associated Diseases Society). You can find a LLMD through Global Lyme Alliance, the leading nonprofit on Lyme disease. Don’t give up if the first doctor you meet with doesn’t feel like a good fit! There’s a long road ahead of you and in my opinion, having a doctor you really connect with makes the journey to recovery a little more manageable.
3. Before your first appointment, conduct a little background research.
I walked into my first appointment with my Lyme doctor knowing very little about the disease and options for treatment. It was only after my first couple of appointments that I started to do my own research. If you can, I’d suggest reading (or at least skimming) the following books on Lyme disease:
I wish I had read this book before my first appointment! This is an incredibly well-organized, encouraging book that is easy to follow and understand. Dr. Ingles contracted Lyme disease in Connecticut, eventually healing himself through a natural protocol of herbal supplements and an anti-inflammatory diet. I like it because the information he provides about building up your immune system, improving your gut health and overall nutrition is beneficial for anyone with or without an autoimmune disease who simply wants to improve their health. Plus, since most Lyme disease treatments aren’t covered by insurance, his solutions are a relatively simple and inexpensive option for treatment.
“Unlocking Lyme: Myths, Truths, and Practical Solutions for Chronic Lyme Disease” by Dr. William Rawls
Another well-written book. Dr. Rawls is an OBGYN from North Carolina. After contracting Lyme disease, he used an herbal protocol to heal himself and eventually opened a new practice promoting wellness through herbs and natural therapy options. His writing is clear and direct regarding the background on why a treatment works, when to look to other alternatives, and how to evaluate your progress during treatment. He really emphasizes how much you can do on your own (there’s even a self-assessment checklist), as well as the impact of environmental and other stressors on your health you may not be aware of. I also really enjoyed how each chapter has easy-to-read bullet points of highlights and practical steps for recovery.
4. Join a support group.
A wonderful silver lining of this disease is the incredibly supportive online community of fellow Lyme patients. Sure, Lyme manifests differently in each of us, but plenty of our symptoms overlap, so it can’t hurt to connect with others. I joined the Women’s Lyme Disease Support Group on Facebook which has about 20,000 members from all around the world. It’s an incredible source of information, but more importantly, a wonderful support group can help you feel less alone. High Vibe Chronic Lyme + Chronic Illness Tribe is another Facebook support group created by Jordan Younger of The Balanced Blonde (guys can be members of this group). There are other groups for each state and specific treatment protocols, so do your best to find the group that feels right for you.
5. Be your own advocate because false negative test results are common.
Over the past year, I’ve been tested for Lyme four times, but two were negative. One of those negative results was from the best lab in the world for Lyme testing. Even though I still felt like crap, my doctor was convinced by this negative report that my Lyme disease was gone. A couple of weeks later, a urine sample showed my Lyme was still very much present. Moral of the story: listen to your body because you know it better than anyone else. Since Lyme disease is so difficult to catch through blood work (you can read more about that here), it’s often diagnosed based on your symptoms. So don’t let any person or doctor convince you that your problems are all “in your head” because your blood results are negative. Don’t allow yourself to believe that suffering is normal and acceptable. It’s not. You deserve answers, support and treatment from a knowledgeable LLMD.
6. Finally, don’t be afraid to ask for support.
Sometimes I can handle aspects of my illness on my own, other times I can’t. In the moments when I don’t have the brainpower or physical strength to accomplish the task at hand, I lean on others. Asking for help means I’m strong enough to admit that I need guidance, I’m brave enough to acknowledge that there are some circumstances beyond my control, and I’m mature enough to know that I don’t always have to face my battles alone.