I've been in treatment since October of 2015, but was officially diagnosed in January of 2016. It's been almost two years immersed in the Lyme life. Thanks to the thousands of other knowledgeable Lyme patients and experts, I've learned so much in such a short amount to time. There is still so much to learn, but here is what I've learned so far.
The Best Lyme Advice I've Received So Far:
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. I track my symptoms on a calendar, so I can go back (up to a year sometimes) and see if I was 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. I keep a list of all my 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 we 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 catches me off guard every single time I see a new doctor. What do I say? Do I tell the truth and risk being told what I have doesn't exist, or do I skirt around the subject. In my case I am fortunate (although that's probably not the right word) to have a second chronic infection that is recognized by the medical community, so I disclose that instead. 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. I think of my doctor as an exceptionally experienced and knowledgeable guide, but ultimately the choice is mine, because I'm the one who has to live with it.
6. Let go what no longer serves you.
Lyme is here to tell us something. It's here to tell us 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 bad habit? It's time to do some deep soul searching and put yourself first for a change.
Each day I learn something new on this journey, adding up to a lot of wisdom I will be able to take with me into my life after Lyme.
What's the best advice you've received so far?
"Time gives good advice." - Unknown
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.