LYME DISEASE

…and the things I wish I knew sooner

By Jessica Snajder Partner in Lyme

IIn 2018, my daughter was diagnosed with Lyme at the age of 18. Five years later, this disease is still a constant part of her life. In 2022 I was diagnosed along with my younger daughter. Now three people in our family of four are in treatment for late stage, or chronic Lyme disease. There are a few things I wish someone told me when my family was in the beginning stages of this multi-year battle.

Lyme is more prevalent than I ever imagined. Lyme is sexually transmitted, transmitted through breast milk, and can be passed inutero. The CDC estimates that 476,000 people are diagnosed every year and this is only a fraction of the true infection rate. The CDC has very strict parameters as to what constitutes a positive diagnosis when in fact, someone can be positive, but not CDC positive. This translates to a school bus filled with children infected every day. If media outlets reported on this accurately and often, people would take notice and educate themselves. It is time to better understand Lyme.

Lyme is an umbrella term for multiple Tick Borne Diseases. When someone says they have “Lyme” what they often mean is they have tick borne disease. Lyme disease, or Borrelia, is rarely transmitted in isolation. Ticks carry multiple pathogens and transmit them in as few as fifteen minutes. Any tick found embedded should be sent for testing to an independent tick testing laboratory. Town Health Departments often test ticks but usually only for borrelia. Other common infections such as babesia, bartonella, ehrlichiosis, toxoplasmosis, Rocky Mountain Spotted Fever, and more are not tested. These infections can be very serious and often require a different treatment protocol than Lyme. You may see Lyme referred to as Lyme+ for this reason. without deodorant? We would take the extra few minutes to circle back home, or stop at a store to purchase a tube. We would apply it and feel confident as we went about the rest of our day. We need to treat tick prevention the same. Don’t leave home without it. Keep a bottle in your bag, your car, your medicine cabinet. There are many natural options that are effective and smell lovely. My favorite is Tick Tock Naturals and they are a supporter of our family run nonprofit Partner in Lyme. Apply it daily to you and your family. If your child is not old enough to apply sunscreen independently, apply it to them. The extra ten minutes added to your morning routine can be the difference between health and chronic illness.

You’ll quickly realize even the name of your disease is misunderstood. When you refer to Lyme disease, know that it is named for the town in Connecticut where a cluster of infected children was identified. This disease in not “Lymes” or "Lyme’s”. It is just “Lyme”. Mothers were responsible for the identification of this disease. Their children were exhibiting arthritis-like symptoms and they did not give up searching for answers until the bacteria Borrelia was identified in each child. I believe it will be mothers who will bring about a change in how this disease is diagnosed and treated.

Take time to prevent Lyme. What would happen if we left home

There is no easy fix for Lyme. This disease is not a “take 2 weeks of Doxycycline and you’ll be fine” kind of disease whether you have found a tick or a rash or whether you have been on a two-year quest to find out why your body is failing you. Studies show that 8 weeks of antibiotics are recommended for acute Lyme disease. Because the CDC stipulates that only 21 days of antibiotic treatment is necessary, most physicians will not prescribe more than three weeks. Doctors that are literate in the treatment of Lyme disease, or LLMDs, will diagnose

Lyme clinically since testing can be notoriously inaccurate, and will treat with extended antibiotics, herbs and supplements. They do not take insurance and can be hard to find. Networking with local nonprofits and larger national organizations like LymeDisease.org can help connect a family with a Lyme Literate Medical Doctor or Lyme Literate Naturopathic Doctor (LLND).

You need to educate yourself on Lyme because you must be your own advocate. We went into this treatment like we would as if we had a common bacterial infection like strep. Our primary care doctors told us that antibiotics would “make you feel so much better”, and they did take away my daughter’s chronic migraines, but at a very high price. While one symptom went away, it set off a chain reaction of other symptoms (numbness, muscle pain, fatigue, hair loss, weight gain, skin dullness, joint pain, brain fog, and more). We had no idea. When we received the diagnosis we only had chronic migraines, light & sound sensitivity and difficulty concentrating. I wish I had read the book Unlocking Lyme by Dr. Bill Rawls. I wish I had a clear understanding then of the differences between acute and chronic Lyme and which treatments work best for each and how to best support the body while it is undergoing treatment.

When they said Lyme is expensive, we had no idea. We had no idea the average person with Lyme pays $50,000 out of pocket every year. We had no idea families split up, marriages fail, homes are sold or remortgaged, second and third jobs are taken on and credit cards are maxed out to pay for treatments. I know of Lyme doctors in our area that cost over $2,000 for their first visit. I wish someone told us to watch documentaries like The Monster Inside Me and The Quiet Epidemic, so that I could understand that we were entering into not only a physical and political battle but a financial one as well.

Your child needs emotional support just as much, if not more, than physical support. Do you know that suicide rates of Lyme patients are estimated to be 1,200 per year and I believe this is underreported. The majority of people who take their life are older teens and young adults. It is okay if a college student can’t attend college. It is okay to use a mobility aide. Support animals/therapy animals truly are life-savers. Watch a movie with them or take them for a ride to see the sunset at the beach or over a beautiful field. Recognize that many friendships end due to the limitations Lyme places on patients. When a best friend moves on in life, there are tears on the other end of social media, tears of envy mixed in with self-pity.

Be there to lift up your child. Hug them and tell them that tomorrow is a new day and you will be with them come what may. Change your mindset very early on from “suffering from Lyme” to “living with Lyme”. Your mindset matters. We are living with Lyme, and for as long as it takes, we will stand side by side until we can shout loudly that we have achieved remission.

Until that day comes, we will celebrate the good days, when pain is minimal, energy levels are higher, and life seems somewhat normal, and on the bad days we will all pile on the couch, pop some popcorn and watch a Hallmark Christmas movie. We don’t say we suffer from Lyme. Instead, we live with Lyme.

You will find the silver lining, even if you have to create it. I was frustrated that my18 year old daughter could no longer drive, could no longer play piano, could not attend college full time, and was in constant pain. I was bitter that she had to give up horseback riding, playing keyboard in her worship band, and lost several close friends. I was angry doctors were charging thousands of dollars, promising she would feel better and she only got worse and worse as time progressed.

I began Partner in Lyme in 2020 as a way of bringing blessings out of a time of hardship and pain.

We exist to help carry the burden of Lyme disease. We do this by providing residents of Connecticut $1,000 of financial assistance for the treatment of their disease. We send greeting cards to give people suffering from Lyme a monthly pick me up. We deliver Hope Bags every holiday season filled with locally sourced self-care items. We counsel people on the proper removal of ticks (always pull up, never squeeze and never smother) and where to have ticks tested. We have helped people pay for tick testing and rejoice when the report comes back negative and connect people with doctors when the report is positive.

We have offered online parent groups and book talks. Sometimes we just listen as someone unburdens their heart of the frustration, pain and fear they carry. I never imagined this is where I would be right now, a Lyme patient caring for young adults with Lyme, while running a nonprofit dedicated to Lyme, but this is my purpose and in it I find joy.

Jessica Snajder Founder & Executive Director, Partner in Lyme