Thanks to the numerous knowledgeable Lyme patients and experts, there is a great deal of information available about living with Lyme disease. I've compiled some of the best advice I've heard and consolidated it into this post. As with any other form of advice, run it through your personal filter, take what applies to you and leave the rest.
Advice for Living with Lyme Disease:
1. Many things will get better, some will get worse.
For many Lyme patients just getting a diagnosis is a giant leap in the right direction. After that you will start treatment. Treatment for Lyme is like the song Opposites Attract by Paula Abdul. You take two steps forward and two steps back. Sometimes if you're lucky it's only one step back. It will be forward and back until you reach the end goal of remission. It's easy to lose heart with so many setbacks, but if you keep going forward it will pay off.
2. Write down your current symptoms and track your symptoms over time.
When you've had Lyme for a long time, sometimes it's hard to remember if a symptom is new or something you've experienced before. Track your symptoms on a calendar, so you can go back and see if you were experiencing the same symptom during that season. It's time consuming, but it's been very helpful at doctor's appointments.
3. Always keep a copy of your current medications and supplements on hand.
With all the changes in medications from month to month it can be hard to keep track. Keep a list of all medications and supplements in a GoogleDoc and then update it after each change. You will be asked 50 bajillion times to list your medications on forms. Because Lyme patients tend to be on so many, it's more painless to just carry an updated list and attach it to forms rather than writing them all out over and over.
4. Come up with a plan of what you will say to conventional doctors.
It will catch you off guard every time you see a new doctor. What should you say? Do you tell the truth and risk being told what you have doesn't exist, or do you skirt around the subject? Some patients bring current Lyme research along with them to present to doctors, some choose not to mention it.
5. Go with your gut.
You will hear a lot about how the treatment you chose is "bad." Antibiotics are terrible. Herbals aren't strong enough, etc. You need to decide what is right for you and what makes you feel better. This of your doctor as an exceptionally experienced and knowledgeable guide, but ultimately the choice is yours, because you're the one who has to live with it.
6. Let go what no longer serves you.
Lyme is here to tell you something. It's here to tell you that we need to make major changes in our life. When you have Lyme you have to go through a physical and mental house cleaning. Do you need to let go of a job, a relationship, a behavior, a habit? It's time to do some deep soul searching and put yourself first for a change.
Each day you will learn something new on this journey, adding up to a lot of wisdom you will be able to take with you into your future life.
What's the best advice you've received so far?
"Time gives good advice." - Unknown
I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.