I’ve had the misfortune of getting re-infected just as I was pulling out of two-plus years during which I was largely sidelined by lyme and other tick-borne infections. There’s a bit of good news, however. I learned a few things the first time around, and I’m doing things differently.

Here are some lessons I’ve learned. Maybe you can benefit by taking them to heart now, instead of learning the hard way like I did over time and missing out on benefits you could have enjoyed much, much sooner.

Get a lyme-literate doctor (LLMD) My primary care provider stopped treating me because she thought a negative test meant I didn’t have lyme. (turns out false negatives aren’t unusual). Then I saw a neurologist, rheumatologist, and infectious disease doctor, none of whom pursued aggressive treatment. Typical of the prevailing lyme controversy in the medical community, two of the three told me lyme was not causing my debilitating symptoms.

All the while, I was declining mentally and physically.  My legs weren’t working, my mind wasn’t working, and I was running scared. It wasn’t until a friend of a friend gave me the name of a compassionate and knowledgeable LLMD that my health —and my life—turned around. Find yourself an LLMD by networking with local lyme groups, through lymedisease.org or the Lyme Disease Association referral system. 

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See a therapist if you feel overwhelmed or depressed. For too long, I dealt with the emotional side of Lyme alone. Well, that’s not entirely true. My closest friends and family listened to me for hundreds of hours on the phone, and fielded plenty of emails featuring me venting.

But here’s the thing: You’ve got a scary disease many people don’t understand or even recognize as life-threatening. You’ve got losses that might include your independence, your job or financial security, memory, being able to think clearly, and even relationships.  All the controversy and uncertainty brings more stress.

But if you take your stresses and worries and fears to a counselor, they can help you cope. And what I’ve found is, I don’t dump nearly so much on my brother or sister, not to mention my dear friend Lucie who calls to check on me every single day. I have more time for conversations on uplifting and new topics. And that’s definitely more healthy.

Ask for and accept help. I look back two years, and don’t know how I did it. I drove three hours to and from work, and afterwards dragged myself to the grocery store. I made dinner for my son if I had a leg to stand on.  I took cabs alone to countless doctor’s appointments and medical tests. Once I hit the wall and was confined to bed, I got dangerously dehydrated because I couldn’t manage to get up several times a day to get adequate water.

People often said, “Can I do anything?” and I could never say yes. Pride? Denial? The fact that doctors kept telling me there was nothing wrong that they could find? Maybe some of each. I’ve always been there to give help others, but somehow could not see myself as the receiver. Don’t be that person!

My mother-in-law had a sign in her kitchen that said, “Too many cooks in the kitchen may spoil the broth for some, but I like help.” That’s my mantra now: I like help. I embrace it. The more I do it, the more great experiences I have and the easier it gets to ask the next time. I ask for library books, meals, groceries, prescription pick-up, a walk for my dog, and even just 30 minutes of company when I need it. Life is so much better.

Detox. The goal of treatment is to kill off the bacteria causing your symptoms. When they die off,  they you may feel worse before you feel better; that’s known as the Herxheimer reaction.  There are steps to take to detox, and they are worth a try. I sure notice a difference now that I have a detox routine. Lyme Chick’s video showed me some of the options.

Exercise.  I know I’m not the only one struck by the way lyme deceives you. A couple of decent days go by, and you think the nightmare is finally over.  Then you do too much, and land back in bed unable to move. Yup, it’s that drastic at times. So how is it possible to exercise? Listen to your body. Take baby steps. Learn to do just enough.

Fight isolation. When you are sick with lyme, all your energy goes into family life or your job, and otherwise you have to rest. At the worst, you’re in bed and don’t even have social interactions through work or family time. It’s a terrible condition, lying there alone thinking about how life is going on without you. I did that for months, failing to realize there was another way.

These days, I have learned to call a friend to chat or invite them to stop by, however briefly. I look forward to a regular phone visit with my college roommate every weekend; we sip coffee and have a leisurely catch-up across the miles, and it feels great. I joined a support group on Yahoo where I can chime in on conversations online. I grab my neighbor for five minutes to say hello. And when I have the energy, I attend real-time, in-person lyme support group meetings. So reach out however you can. Put some social interactions on your calendar this week.

Eat well. Easier said than done when you don’t feel good and don’t have energy. But recovering from lyme and co-infections is a three-pronged process. You need treatment. You need rest. And you need good nutrition to build up your belabored immune system.

Find ways to give your body the superior fuel it needs to do its job. Cook quick meals if you can find the stamina. Order carryout food heavy on vitamin-rich fruit and veggies instead of carbs. See if friends might cook for you once in a while — and don’t be shy about giving them a recipe for something you’ll actually eat! Freeze the leftovers for another tough day.

This lessons-learned list comes down to one thing, really. Take care of yourself.

Tagged: counseling, detox, exercise, find a lyme doctor, herxheimer, isolation, lessons learned, LLMD, loneliness, lyme disease, lyme literate doctor, meals, nutrition, testing, therapy