As we explored building up a care team last month, we chatted with Co-Founder Emily Levy. She has recently made progress with significant health challenges by overhauling her care team. We’d like to share her tips with you, in case it aids you on your journey!
find a Lyme literate doctor (LLMD)
First of all, start with IGeneX— it is the most accurate Lyme test on the market. If you have Lyme, an LLMD is crucial. The Global Lyme Alliance has a phenomenal tool (here) for finding someone near you! I am currently being treated by Dr. Casey Kelley at Case Health in Chicago. She is a functional medicine doctor who has had tick-borne illnesses. She is compassionate and knows her stuff. After an initial in-person appointment, she will do telehealth. She will also dig deep into any autoimmune issues Lyme may have caused and she believes gut health is essential for healing. She will also do IV therapy. I am a BIG believer in IV therapy and a PICC line is critical for that success. If you want to know more about living day to day with a PICC, or more of the pros and cons, check out our PICC resources here.
I also go to The BioMed Center in Providence, RI for vitamin IV’s and biomedical healing (Dr. Kelley coordinates with them). There, I receive Ozone therapy. I highly recommend looking into this. I wish I’d started it sooner. Their clinic is based on a Lyme clinic in Switzerland many patients in the community have traveled to. Their philosophy is similar to Dr. Kelley.
I have many friends that have gone to Germany for intensive therapy at the St. George Klinic. I have not been myself but would recommend Brandy Dean who has been. She is the founder of The Dean Center (they take insurance!) at Spaulding Hospital in Boston. Brandy is also a Lyme Health Coach and is the Founder of Ride Out Lyme, a Lyme Charity in the fitness space.
Other helpful healers: Reiki, Thai Massage, Polarity Therapy, and Lymph Drainage have played a critical role in reducing my pain, detoxing, and moving the bacteria out of my body. I have found working with someone 1-2 times per week was critical for my pain.
Other specialists, to focus on your gut, nutrition, and multisystemic healing are important. I see nutritionist Leah Somers at the Lyme and Pans Treatment Center in Cape Cod. I see Dr. David Younger at NYU for IVIG Therapy. He is one of the few doctors who sees the neurological link to Lyme and brain changes. IVIG has made my nerve pain more manageable and gives me an immune system boost, but it is very hard to get approved.
Rushelle Khanna is my therapist and business coach. I love that she has had Lyme and she can understand the challenges of being an entrepreneur with chronic illness. She is in NYC and does telehealth.
The Global Lyme Alliance (GLA) and Project Lyme are the two biggest Lyme organizations whose goals are to raise funds for Lyme research, treatment, and mental health. I have spoken at GLA and Project Lyme fundraising events and am so buoyed by the millennials who are dedicating their time to finding a cure. They both are incredible communities, however, I found that Project Lyme’s offshoot for millennials, Generation Lyme, is the biggest help in supporting one another on a day-to-day basis.
You can listen to my full journey on the Tick Bootcamp Podcast. It is a long episode, but I go into detail about many of the healing modalities above.
Advocacy Express is the easiest way to advocate for Lyme legislation change, which is currently going through Congress.
Flores Lane Candles have helped me to be centered. Founded by a fellow Lyme warrior and advocate.
As I and most other patients know, chronic illness and tick-borne disease are not a one-size-fits-all treatment plan. What works for me, might not work for you — and vice versa. This is meant to be an honest recount of my own personal health journey, and I encourage you to discuss options with your medical team to see what is in the best interest of your health and healing.
Wherever your journey is right now, I wish you luck and healing! Remember, no matter how tough it gets, you are not alone 💚