The Advice I Wish I Had When Diagnosed with Lyme Disease

Over the last few weeks I’ve connected with a few people recently diagnosed with Lyme Disease and co-infections. It can be an extremely scary and stressful experience. Looking back on my own long journey to recovery, I am here to share the advice I wish I had when I was first diagnosed and didn’t know where to start.

There is no clear cut treatment plan for Lyme or most chronic illness for that matter. This makes the whole getting better thing very confusing. You probably saw 10 different doctors all giving you different advice and some might not even believe Lyme is real. Yes, I had one doctor tell me he didn’t believe in Lyme.

The first step is identifying the right doctor or doctors to work with. Take a real deep breath and clear the space in your head so you can focus. Really think about what you need and want from your doctor aside from understanding your illness.

It can be flexible office hours, a functional medicine approach, emergency weekend availability or a belief in you getting better. It can and should be a combination of these things. Write down your doctor wish list.

I knew from the beginning I wanted to combine eastern and western approaches so I targeted a Lyme literate functional medicine doctor who believed in my ability to heal. I would suggest doing a little research as specialist doctors can be very costly and often don’t accept insurance. Read reviews online or ask around! As expensive as they were, I was willing to do anything to ensure I was in the best possible care.

What if you don’t pick the right one to start with? That’s okay too. I switched doctors in the middle of my treatment because I realized after some time that my physician was causing me more stress than anything. I needed a doctor with more availability.

Experiencing chronic illness and negative effects from treatment can be scary. I needed someone who would return my calls in a timely fashion. My original physician barely returned my calls and I had to show up to the office unannounced and stalk him to get answers. Hey, you do what you have do when you are in survival mode. This was not working for me.

Don’t stress out about finding the perfect doctor. At the end of the day, if it doesn’t work out, you are free to switch to someone else. There is no binding contract that says you must continue your treatment with this person. I switched half way through my treatment because it didn’t feel right. Keep a medical binder with all your lab work and testing to make the switch more seamless.

As I continued on my path, I needed to bring in other doctors for different issues that came up. I ended up with a few people to call when I needed to. Healing from Lyme is a lot of trial and error. The key is to start somewhere and you can pivot along the way.

Second, you need to believe in your ability to get better.

Not only should your doctor believe you could get better but YOU need to believe it too. I don’t care what you have to do to convince yourself. No matter how sick you feel, you must believe in your ability to heal.

Surround yourself with positivity and ignore everything else. I learned I needed to take my mind off my symptoms to move forward. This included watching funny shows (laughter is the best medicine), reading books, writing and spending time with family. Do whatever you need to do to keep your mind off “being ill.”

One of my favorite books I read while I was feeling my worst was Spontaneous Healing by Andrew Weil. It had stories from people who healed from all kinds of serious health issues including advanced stage cancer. It gave me hope that this would one day pass or I would at least improve from where I was in that moment.

Stay focused on supporting your body and mind in any way you can.

It’s an overwhelming experience but be a participant in your healing. Identify the doctor or team of doctors that you feel comfortable with. Make decisions with your physician and understand why you are taking certain medications and even vitamins. You know your body best! As you start this healing journey, give yourself extra love and support for recovery. Keep a journal to track your progress making note of small victories along the way that you can revert to whenever you need a pick me up.

Remember to tune out the negativity and noise. Nobody got time for that.

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