Joy R. from New York
Do you remember being bitten by a tick? If so, do you recall where?
I lived in very tick-infested areas throughout my life, so I have no idea how many times I may have been bitten, but there is one bite that I do know of. My mother found a tick that was stuck and feeding behind my ear. She removed it and we never thought twice. (This was probably 1990).
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 have seen probably 100 providers during this span of time: primary care, ENT, orthopedic, gynecological, psychiatric, kinesiology, rheumatologist, dentist/orthodontist, neurological, dietician, chiropractic…
Anything else you would like to share about trying to find a diagnosis:
I had many diagnoses over the span of 27 years. I was often given individual diagnoses but no one believed that there was one underlying cause for my symptoms. One diagnosis was bipolar. Once that diagnosis was listed in my chart – in combination with the fact that I had a psychiatrist and dealt with depression, anxiety and mood issues - no one believed me. I was branded the moment the doctor looked at my file and was dismissed as crazy or drug-seeking.
How long have you been treating Lyme for and what treatments have you tried?
I was diagnosed with late stage chronic neurological Lyme Disease and co-infections in 2/2017. Since that time, I have been under the care of an infectious disease LLMD. I was placed on IV antibiotic treatment early in my treatment due to the severity of my illness/symptoms. I am still on a pulsing IV antibiotic schedule that runs on a 4-week cycle. I am still on IV treatment as I had several setbacks that required a break from IV therapy. I hope to be finished with IV treatment within the next few months and will then be on an oral regimen. My treatment consists of prescription medications, IV antibiotics, herbal remedies, supplements, and various detoxifying methods.
List up to 5 of your biggest (past or current) symptoms:
Seizures, adrenal fatigue, neurological (i.e. balance, mood, etc.), brain fog/word recall, and pain.
What (if anything) has made the biggest difference for you so far?
I am still in the beginning stages of recovery. My system was very fragile by the time I received a diagnosis. I am lucky to be alive.
What is the biggest way that Lyme has affected your life?
From age 11-38, I went from being an active and athletic person to someone that is considered permanently disabled and unable to do basic tasks. For the most part, my life has shrunk to the 4 walls around me. I do realize that this will take several years to regain health - but for now, I am still in the thick of it and it has had a profound impact, not only on my life, but also the lives of my husband and son.
What do you wish people knew about Lyme Disease?
We are not crazy. We are not drug-seeking. Depression or any other psychiatric condition does not automatically negate a physical issue. We don’t want to be sick. We don’t want to be in bed or in a chair 24/7. We don’t want to miss out on life. We are not doing this to ourselves. We are not seeking attention. Lyme is a very real disease. It is a horrendous disease and the longer our country and medical community remains uneducated, hundreds of thousands are living half-lives (at best) and struggling to get through the day, to be believed, to have an answer and to find treatment.
Any advice for someone newly diagnosed with Lyme?
Take a moment to rejoice in your diagnosis and then realize that the road that lies ahead is going to be incredibly difficult. You will want to quit treatment but don’t. Find those who support you emotionally and create a circle of safety and support that will be there for you during treatment. Don’t be afraid to ask questions. Do research. Be your own advocate.
Fun fact time! What is something unique about you?
I was kissed by President Jimmy Carter.
For more on Joy’s Lyme journey, please visit: https://wordpress.com/thebravestthingishope.wordpress.com