Jenn Hyla

View Original

6 Steps to Take Following a Lyme Disease Diagnosis

Jenn Hyla

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:

Below are reputable resources to learn more about Lyme disease:


Lyme education websites

Lyme books

Lyme Documentaries

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? 

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.

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/