Sara B. from Ontario, Canada
Updated: May 3, 2020
How long do you believe you have had Lyme?
I was bit in the spring of 2014.
How long did it take you to get a diagnosis?
I was diagnosed in March, 2016.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Yes - other than my family doctor, I saw two rheumatologists, an immunologist, a gastroenterologist, two internists, and more than six resident doctors.
Anything else you would like to share about trying to find a diagnosis?
In the fall of 2015, I became very weak, unable to walk up the stairs, my chest pain was increasing - and we had talks of possible cancers. As we were worried and unsure about what to do next, we went to the Mayo Clinic, which cost $35,000, and we hoped for an answer. There, I was told I didn’t have the symptoms of Lyme Disease and that I had a “brewing” autoimmune disease. It was suggested that I take steroids and immune-suppressing drugs to manage symptoms. When I listened to my body and my gut, I knew this wasn’t the case. I can’t explain how - but I just knew it wasn’t an autoimmune disease. I refused the medications and looked into Lyme a bit more. We soon realized how likely it was that I did, in fact, have Lyme from an insect bite back in 2014. At this point, I was in excruciating pain daily and wasn’t able to move on my own. We had my blood sent to Igenex lab and four weeks later, we had a CDC-positive result. From there, I booked an appointment with a Lyme-literate doctor and have finally been able to move forward.
How long have you been treating Lyme for?
I had a central line placed in June 2016, and am still currently on IV antibiotics. I go to a Lyme doctor in Washington, and they’ve saved my life. I can walk again on my own. Although I get weak from time to time and still need help to move, I’ve made milestones. Next month we’ll assess if I am able to remove the IV line and transition to oral antibiotics.
Do you have any coinfections? If so, which ones?
Yes - Bartonella and Babesia.
What types of treatments have you tried?
Two months before my diagnosis, I saw an internist who gave me a script for 30 days of doxycyline, saying, “If it is Lyme, I don’t see if this can hurt.” After five days, I was incredibly sick and nauseous, so we stopped the antibiotic. At this time I didn’t realize it was a herx reaction.
I didn’t start any kind of treatment until my Lyme doctor appointments, when the IV line was placed. From this point forward, I’ve been on IV and oral antibiotics.
List up to 5 of your biggest (past or current) symptoms:
PAIN...very intense neurological pain
Joint pain and inflammation
Extreme weakness and inability to lift my head, arms, and legs
Body spasms and twitches
What is the biggest way that Lyme has affected your life?
It has forced us to stop what we were doing. Life had to slow down and our focus had to shift. I believe it was a wake up call to shake me from the routine of daily life and force me to ask myself, “What do you really want from life?” I’ve gained a great appreciation for this illness. It has come with many lessons and because of it I know I’ll live a more fulfilling life doing things that will truly make me a happier - more whole - person.
What do you wish people knew about Lyme Disease?
I wish people understood the gravity of this disease. There needs to be more awareness so that people take preventative measures. I wish I woulnd't have to worry about others' responses when I tell them, “I have Lyme Disease." There needs to be a change - our government needs to acknowledge this as a significant problem and that we need to come together to allow affordable access to healthcare without discrimination. Our doctors need more education about this disease.
Any advice for someone newly diagnosed with Lyme?
Don’t lose hope. It can be a dark hole to fall down, but without darkness, there can’t be light. Listen to your body and trust your instincts. Do your due diligence in selecting a Lyme doctor that is right for you. The organizations, ILADS and CanLyme, both provide lists of Lyme doctors. Do your research and choose someone you can trust and someone who has integrity. Trust the process - healing doesn’t come overnight … It takes time and patience. As difficult as this is, try to accept it. Allow things to slow down and allow your body a chance to rest and heal without pressure to do so. And PROBIOTICS - these are very important! Start a good quality probiotic as soon as you think you might have Lyme or have just been diagnosed. Eat real food, avoid processed foods, and drink lots of water. Food is also medicine.
I’ve started blogging about my journey for the last year. This has been very helpful to get my thoughts out, and to help increase awareness. My goal is to help people, and by writing, I’ve come across many people who’ve sent me messages saying how helpful it was. This fulfills my heart and I hope my posts continue to help people. If you want to read more about my journey, you can go to my website at www.soulnutritionconsulting.com.
Fun fact time! What is your favorite thing to do in your free time?
I love when I can find moments where you can forget, even for a few minutes, that you have a chronic illness. That might be a visit with a friend, dinner out, or a short trip out of town. I’ve learned to knit. I’ve also been able to take time to start reading again. Basic, gentle yoga has also been reincorporated back into my life and I look forward to that movement every day.
To find out more about Sara's journey, please visit her website: www.soulnutritionconsulting.com. She is also on Instagram as @soulnutritionconsulting.