Ali L. from Connecticut
How long do you believe you have had Lyme/tick-borne illness?
I believe I’ve had Lyme Disease for about 10 years. I was on the golf team in high school and spent a lot of time looking for lost balls in tall grass. I believe I got bitten by a tick then. The importance of tick checks was not emphasized. I ended up with a mysterious fatigue related illness, back in high school, which we treated with antibiotics and I got less fatigued for a while.
How long did it take you to get a diagnosis?
When I was in my junior year in college the fatigue came back, worse than before, coupled with terrible joint pain and chronic fevers. I had to take a medical leave of absence and for three years, I visited doctors ranging from my local primary care doctor to specialists at the Mayo Clinic, before a doctor suggested taking a test for Lyme. Even then, it was just the CDC test, which was negative. Another year passed when a doctor told me about its inaccuracy, especially for chronic Lyme cases. I then took the Igenex Lyme panel which came back positive for Lyme Disease as well as Co-Infections: Babesia, Ehrlichia/Anaplasmosis and Bartonella.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Yes, I did see a variety of doctors including gastroenterologists, immunologists, infectious disease specialists, neurologists, psychologists, psychiatrists, hematologists, endocrinologists, cardiologists, general practitioners and nutritionists.
Were you diagnosed with anything else before Lyme? If so, what?
Yes, I was diagnosed with several other chronic illnesses, including thyroid cancer, Irritable Bowel Syndrome and Hashimoto’s Disease, while visiting general practitioners and specialists. In retrospect, my doctors and I now suspect these conditions weakened my body and allowed the Lyme to resurge, as it had never been fully treated.
Anything else you would like to share about trying to find a diagnosis?
Yes. Throughout my experience with doctors, finding a diagnosis was not difficult - finding the correct diagnosis was emotionally and physically painful. My sense of my own health and understanding of my body was put to test since many doctors did not believe my exhaustion and fatigue were due to anything more than laziness. It was a confidence-wracking experience requiring persistence and support from my family. I’m lucky enough to have that support, but many are not and hopefully sharing this can help people understand that they aren’t wrong, lazy, or crazy and that they need to advocate for their health.
How long have you been treating Lyme for?
I have been treating Lyme with a variety of antibiotics and natural supplements for the last three years.
Do you have any coinfections? If so, which ones?
Yes, I have a few co-infections. I tested positively for Babesia, Ehrlichia/Anaplasmosis and Bartonella.
What types of treatments have you tried?
My treatment has so far consisted of several antibiotic cocktails and natural supplements. The antibiotics improved my symptoms dramatically, but they caused a severe intestinal flora imbalance worsening my IBS and giving me Candida Overgrowth and SIBO. I’m now taking specialized antibiotics for that, as well as antifungals. I’m also starting IVIG treatments soon to hopefully improve my energy and cognitive function, as they are not back to where they were pre-Lyme.
List up to 5 of your biggest (past or current) symptoms:
- Constant Fatigue
- Low-Grade Fevers
- Joint Pain
- Brain Fog with Short-term memory loss and Inability to Focus
What is the biggest way that Lyme has affected your life?
Lyme disease has completely changed my life in many ways - the biggest being that I took and am still on a medical leave of absence from college. But it also helped me in a few positive ways: I found cancer when it has only metastasized to one lymph node, I’ve lost about 100lbs changing my diet, and I’m now starting an allergen and irritant-free food company, Bare Life, with my best friend. Our first product, a dairy and refined sugar free Hot Chocolate powder, is coming out soon.
What do you wish people knew about Lyme Disease?
I wish more doctors were open to the concept of looking for chronic illnesses, especially Lyme Disease. That every answer isn’t right in front of you. That just because someone is obese, doesn’t mean all their problems stem from that. Many doctors told me, “you're just tired because your obese, lose weight” and then wouldn’t look any further. I also wish my family and friends understood my ‘invisible illnesses’ more. I am often told, “you look so good! How can you be sick?” or “just push through it” and “you’re life’s not that bad, just get out of bed.” I know they all mean well, but it was still hurtful to hear, because I was trying!
Any advice for someone newly diagnosed with Lyme?
Be your own advocate and join some support groups! Have confidence in your own understanding of your body and identify people who will support you. I couldn’t have gone through all the doctor visits and treatments without love and support.
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
I love cooking! Creating and testing recipes are two things I love doing most. Cooking is a great distraction and escape for me.
You may find Ali on Instagram as @alilazowski. Her Facebook support group for Chronic Lyme is https://www.facebook.com/groups/1861858517461676/?ref=bookmarks.
The website for her allergen and irritant-free foods company is www.eatbarelife.com.