This article was first published on Lemons 'N Lyme on June 1st, 2016. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
I suppose the silver lining of a chronic Lyme disease diagnosis is that you have a diagnosis. So many of our ranks suffered for years with no answers. I know the sense of relief I felt when I finally knew what was wrong.
But that is just the first step. Now you must venture into the strange maze of chronic Lyme disease treatment. Here are a few things I wish I'd known when I asked the doctor, "So, you're sure this is it?" and she confidently and reassuringly said, "yes."
1. You are not alone.
It is scary to receive a diagnosis of a "rare" disease, but Lyme disease is not rare. There are 300,000 new cases recognized by the CDC each year, and some estimate a much higher number that go unrecognized or unreported. In my small circle I know 2 other people who have been diagnosed with Lyme. Once you start telling people about your diagnosis you will start hearing the stories, "my cousin has that," "my uncle's sister's best friend's niece has that."
Aside from connecting with people who are 2nd and 3rd degrees of separation, I would strongly suggest tapping into the vast Lyme community on the internet.
The first place I looked was on Facebook and I joined a closed group for female Lyme disease patients all over the world and a regional closed group for people in Illinois (where I live) to share resources and ask questions. Then, I tapped into the blog world looking for posts from people who have had similar experiences to mine. Finally, I started my own blog to connect with other bloggers and Lyme patients with the goal of being a positive place for Lyme patients to stumble upon, like I did with so many other blogs, including Lemons ‘N Lyme.
There are countless blogs and social media feeds related to Lyme disease. I would suggest finding a few that share your attitude and approach to illness. I follow blogs and social media feeds that focus on positivity and a modified diet. Some people may want to follow blogs with a focus on research or a certain treatment protocol. The good thing is whatever you are looking for, you will find it.
I truly don't know how Lyme patients diagnosed over 10 years ago coped with this illness without the internet.
If possible I would also recommend talking to Lyme patients face-to-face. I eventually joined a Lyme disease support group and have found it to be extremely helpful. If there isn't a support group in your area, I would suggest having coffee with another Lyme patient who lives close by. If you live in a small area and are unable to find any other Lyme patients near you there is the option of Skype or continuing to form connections online.
The good people of the chronic Lyme disease community are a wealth of support and information. We have to be, because besides some medical professionals, we are all that we've got.
2. It gets worse and then it gets better (and then it gets worse, better, worse).
Now that you and your doctor have decided on a treatment plan, it is time for the roller coaster ride of Lyme recovery. I often describe the Lyme treatment process like an upward moving roller coaster. There are rises and falls, but slowly you will be making upward progress. It just doesn't always feel that way.
I've found that on my bad days I can't remember how I felt on my good days and on my good days I can't remember how I felt on my bad days.
You've likely read up on Herxheimer reactions. You could feel better for weeks, then have a huge herx reaction as the bacteria die off and leave your body.
My doctor has a good strategy for showing me that things are slowly getting better. She documented all the symptoms I brought to her on our first visit (debilitating pain, headaches, dizziness, blurry vision, etc.) and each visit she asks if I still have those symptoms. Most are better, if not gone. I still feel sick, but she helps me see the progress.
This is a strategy you could do with your doctor or on your own. Write down all your symptoms and return to the list once a month to add new symptoms and track progress on your old symptoms.
3. Your treatment will not be like anyone else's treatment.
Dr. Richard Horowitz calls Lyme disease, "Multi Systemic Infectious Disease Syndrome or MSIDS." That is because Lyme usually comes with multiple coinfections (including parasitic and viral) and attacks multiple systems in your body. So depending on which coinfections you have and which systems they are going after you are going to present differently than any other Lyme patient.
There are common symptoms across most Lyme patients, like fatigue, brain fog, and pain, but there are hundreds of other ways the disease can manifest.
Other things that will affect your treatment plan are: autoimmune responses (such as Hashimoto’s Thyroiditis), food intolerances (gluten, dairy, etc.), gene mutations (MTHFR), and vitamin/mineral deficiencies (anemia).
When you look at the above list it is pretty clear why no treatment plans look alike.
Usually they include antibiotics and/or antimicrobials, supplements, and lifestyle changes, but it will always be a variation.
4. There is no right treatment, there is only the right treatment for you.
In my first suggestion I tell you to tap into the Lyme community on the internet. In this suggestion, I'm going to tell you to take it with a grain of salt.
I tend to skip over any Facebook post that contains any negativity or controversial discussion. There are people who will say never take antibiotics and there are people who say antibiotics are the only thing that worked for them.
It is very difficult to land on a treatment that you are comfortable with. When I was undiagnosed, I said no to many different medications, including antibiotics. At the time, I just wasn't comfortable with that particular treatment. I feel like at this stage of my disease I am on the right treatment for me, so I tend to take with a grain of salt advice on what to take or not take. I'm always open to a new approach, but it has to be something I am comfortable with or it will end up doing more harm than good.
5. There is hope.
Lyme disease is a devastating diagnosis and will surely have many days where it feels like an impossible climb.
When you are feeling like you will never get better, go online and read one or two stories of recovery.
I'm 75% better than when I began treatment and I still have moments where I break down and cry. In these moments I use advice I heard on The Oprah Winfrey Show many years ago. There was a guest who had been hit by a drunk driver and had severe, disfiguring burns covering most of her body. She told Oprah that she allows herself 5 minutes a day to cry and after that she gets up and keep going. When I break down, I let it all out, then I get back up and keep going.
It's all we can do.
"I'm not telling you it's going to be easy. I'm telling you it's going to be worth it." - Art Williams
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.