Shany B. from New York
Do you remember being bitten by a tick? If so, do you recall where?
How long did it take you to get a diagnosis?
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
I saw two. One was my primary care provider, who did bloodwork and sent me for x-rays due to an enlarged left rib and breathing issues. The x-ray came up empty. Then I decided to see a rheumatologist because of unbearable joint pain in my hands, thinking it could be arthritis-related. Again, bloodwork and x-rays were done, and I received a misdiagnosis of CFS and fibromyalgia.
Anything else you would like to share about trying to find a diagnosis:
If something doesn’t feel or seem right after seeing a doctor, please don’t give up. Try to seek out other medical professionals. Since the symptoms come and go - and flare up and then pass at times - I waited longer than I should have to pursue a correct diagnosis. It was only when my symptoms declined rapidly into cognitive issues that I freaked out to a point where it became an emergency. Just because a doctor doesn’t have an answer doesn’t mean there isn’t something very wrong.
How long have you been treating Lyme for and what treatments have you tried?
I started seeing a Lyme-literate MD in October 2018. I am on multiple antibiotics, an anti-malarial (for Babesia), nystatin (for candida), antihistamines, lauricidin, and Serrapeptase (biofilmbusters). I also take a full regimen of supplements - including an enormous amount of probiotics – to balance out the antimicrobials and to boost my immune system.
List up to 5 of your biggest (past or current) symptoms:
Shortness of breath, left rib pain, sound sensitivity, memory problems, excruciating hand pain, digestion issues.
What (if anything) has made the biggest difference for you so far?
Going off gluten and drastically cutting sugars at the start of treatment immediately helped with digestion and achiness. Keeping up my running in whatever capacity I am able to has helped tremendously for detox and to keep my mindset positively forward-focused.
What is the biggest way that Lyme has affected your life?
It has limited my ability to be with my kids in the way I would like to. They often have soooo much to tell me - and I have 5 children - teenagers down to toddler ... and with my noise sensitivity I often have a lot of pain with listening and my sensory system gets overloaded. I would say that is one of the hardest things as a mom going through this. I also can’t overdo vacations with my family. When I try to, I end up feeling horrible after. But recovering from Lyme also gives me the ability to appreciate the small things and be grateful for every moment, every breath, and every “good” day or “victory.” It allows me to be more conscious of my days and moments.
What do you wish people knew about Lyme Disease?
I wish people knew how serious and painful it is. I wish people would take me more seriously when they ask questions and I start explaining, instead of having some far-away look, which makes me feel like I am crazy. I wish it was less invisible and more understood. I wish people knew it is not a quick-fix and that it is a hard, painful journey that would be less lonely with a little more support and understanding.
Any advice for someone newly diagnosed with Lyme?
Keep taking the right steps in the right direction and take things one day at a time. Listen to your Lyme doctor and make sure you have trust in them. There are many different treatments and it is important not to compare treatments. At the same time, it is important to connect with others recovering from Lyme. I have found support on social media, and I am grateful. Because this is a disease that no one truly understands unless they are going through it, it’s important to get that support any way you can. While my husband and some family members try, they still do not get it and I still feel lonely with the disease unless I reach out to other patients with Lyme Disease.
Fun fact time! What is something that you like to do?
RUN! I have been running for 9 years, after my 4th child was born. And I haven’t stopped since...I ran through all 9 months of my last pregnancy (5th) up until 2 days before delivery! Running is my passion and my mind/body/soul connection like no other. I have run many races - even during treatment, and next up is the NYC marathon.
To find out more about Shany’s journey, you can find her on Instagram as @shany.runs.lyme.