6 Steps to Take Following a Lyme Disease Diagnosis

I understand how overwhelming it can be to receive a Lyme disease diagnosis. No matter how long you’ve been sick, you're not alone on this journey. With knowledge and support, you can tackle this. So, let's dive into some steps to take following a Lyme disease diagnosis:

Step 1

First things first, take a moment to breathe and acknowledge your emotions. A Lyme disease diagnosis is a lot to handle.

You may feel everything from the relief of knowing what's causing your symptoms to fear, frustration, and anger about how this diagnosis may impact your life.

Allow yourself to experience these emotions and seek support. Remember, your emotional well-being is just as important as your physical health. Stress can exasperate your symptoms and slow the healing process.

Join me for a short breathing meditation here>>

Step 2

Knowledge is power. Take the time to educate yourself about Lyme disease, its symptoms, and its complications. Understand the stages of the disease, potential co-infections, and the available treatment options. 

Watch my Understanding Lyme video here >>

Step 3

Not all healthcare providers have experience with Lyme disease. Seek out a Lyme-literate medical professional who can effectively guide you through treatment. Even if your general doctor has given you a short course of antibiotics, following up with a Lyme-literate specialist is a good idea.

A licensed Lyme-literate physician has undergone a training course with the International Lyme and Associated Diseases Society (ILADS). 

ILADS-trained physicians follow patient-centered treatment protocols and go through the training course, but that doesn’t mean they have all the answers. Like all medical professionals, there are good and far-out ones. Be sure to research your options and follow your gut instincts. 

ILADS provides referrals on its website to help you find a Lyme Literate physician in your area. They will email you three randomly selected options within your zip code's radius.

Click here for ILADS provider search website>>

Before you go through the ILADS referral process, which offers randomly selected doctors, I recommend searching for a local Lyme disease support group. Facebook groups are a fantastic resource to connect with other Lyme patients in your area and see which doctors they are seeing. 

Remember that as people heal, they tend to stop showing up in these online spaces. Limit your time to crowd-sourcing answers to your specific questions. It is easy to get swept away by everyone else’s experiences. Don’t forget that each person is affected differently, so what works for one person may not work for others. 

Complete healing may require multiple doctors, so don’t be afraid to move on if you’re not feeling heard or seeing results. In my healing journey, I found each doctor could only get me so far before they seemed to run out of ideas. 

After each appointment, ask yourself:

  • Did I feel heard and respected? 

  • Did the appointment leave me feeling confident and supported, or confused and dismissed? 

Step 4

Advocating for your health and well-being is a survival skill for Lyme disease patients. This is so, so important because a lot of doctors are unaware of Lyme disease and the complexities around this illness.

I've experienced this and seen this quite often in the Lyme community of being wholly gaslit and made to believe that our symptoms are no big deal. Being told we're overreacting, we should get a hobby, we should try some antidepressants, we should lose some weight, or we should gain some weight, etcetera, etcetera.

Remember that your doctors are working for you! Speaking with your doctor should feel like you're part of a team and that they are open to hearing your concerns and questions and very receptive to what you want to do with your body.

Be aware of defensive medicine practices. 60% to 90% of U.S. doctors may recommend testing or treatments that aren't necessarily the best option for the patient but are geared toward protecting them from being sued ( Jena & Seabury 2022).

Remember that Lyme disease and its treatments impact everyone differently; only you are the expert on your body. Stand up for your rights, and listen to your gut.

Step 5

Your body is working hard while battling Lyme disease!

Ensure you get plenty of rest, stay hydrated, maintain a balanced diet, and engage in gentle physical activity. Listen to your body and avoid pushing yourself too hard during your recovery. 

Step 6

Living with Lyme disease and all the physical symptoms can feel isolating and depressing. When we’re sick, our needs drastically change, and our boundaries and relationships will likely need to change along with them. When we’re healthy, most of us are quick to offer a helping hand to others, but in times of need, we struggle to ask for it in return.

Author Brené Brown puts it best in her book, Rising Strong. She says, “Offering help is courageous and compassionate, but so is asking for help.” According to Brené Brown’s emotional research work, if you have placed your self-worth on being a helper, you will likely feel shame when asking others for help. Know that this is a socially learned belief, we evolved to need each other.

Have you ever shamed the people you’ve helped? Give yourself the same grace.

Surround yourself with compassionate and inspiring people that feel good to be around. Distance yourself and let go of toxic relationships that feel draining and insincere. Seek emotional support from your local Lyme community, churches, and loved ones often. Find an understanding therapist, coach, or mentor you can speak to regularly.

The inflammation from this illness can dramatically affect our mood and emotions. For some, Lyme can manifest in depression, anxiety, sharp mood swings, and other psychological symptoms. Often, our friends and family members don’t have the skill set to support us. The biggest killer of Lyme patients is not caused by physical complications but by suicide (Fallon & Nields 1994). 

Take charge, and ensure you have a sound support system. Don’t waste energy trying to do this on your own, and certainly don’t waste energy getting upset by people that don’t have the skill set to support you. We need you here; call or text 988 if you are struggling with suicidal thoughts or ideation.

Take deep breaths, stay positive, keep fighting, and know that a community of people understands and stands with you on this path to healing. 💪🌿

Disclaimer: The information provided in this blog post is for educational purposes only and should not be considered medical advice. Always consult with a healthcare professional for personalized guidance and treatment options.

Sources used:

  • Brown, B. (2017). In Rising Strong: How the ability to reset transforms the way we live, Love, parent, and lead (pp. 180–181). Random House.

  • Fallon, B. A., & Nields, J. A. (1994). Lyme disease: a neuropsychiatric illness. The American journal of psychiatry, 151(11), 1571–1583. https://doi.org/10.1176/ajp.151.11.1571.

  • Jena, A. B., & Seabury, S. (2022, March 21). Why do so many doctors practice defensive medicine? Maybe because it works. USC Schaeffer. https://healthpolicy.usc.edu/evidence-base/why-do-so-many-doctors-practice-defensive-medicine-maybe-because-it-works/

Lyme Disease Education, ResourcesJenn HylaLyme disease education, Lyme disease, new lyme diagnosisComment