Kim A. from Florida
How long do you believe you have had Lyme/tick-borne illness?
Since the age of 4. I was born in Massachusetts and moved down to Florida on the day of my 4th birthday.
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?
Yes, I have seen so many doctors and have been to many University's in 3 different states.
- Neurological Movement Disorder Doctors
- Infectious Disease
- 8 other various medical centers, universities, and clinics
Were you diagnosed with anything else before Lyme? If so, what?
CFS, Lupus, Fibromyalgia, heart palpitations, low blood pressure, Graves' disease, Bells Palsy, depression, anxiety, thyroid disease.
Anything else you would like to share about trying to find a diagnosis:
I have been sick since I can remember - twitching, migraines, sensitive to light, heart issues, and so much more. My hospital in town just kept telling my parents I was crazy and nothing was wrong with me, even though I have visible symptoms. In 2014, I contracted campylobacter very bad and it causes your body to have bad joints or arthritis. I put the rheumatologist follow up on hold to return to my life as a single mom, working two jobs and in college. About a month after, cysts started popping up on my joints, so I made an appointment about 45 mins from my home. This Rhuematologist just happened to be from Lyme, CT and studied Lyme his whole career. He ran a Lyme test without me knowing, and finally a week later I knew what was killing me my whole life. I finally had to become my own advocate and find doctors all over the east coast to help me. I have spent my whole retirement fund, as well as my oldest child's college fund, just to see my LLMD and pay for daily infusions. I have had lumbar punctures, EEG, EMG, Brian Spect scan, numerous MRIs, Catscans, X-rays, labs, ultrasounds, biopsies etc.
How long have you been treating Lyme for?
Orally - 2014
Infusions daily (Rocephin) - November 2016
Infusions 2x per week (glutathione) - February 2017
Do you have any coinfections? If so, which ones?
What types of treatments have you tried?
Oral - doxy, mepron
Iv- rocephin, glutathione
Mindfulness / cognitive therapy
many detox supplements
List up to 5 of your biggest (past or current) symptoms:
- Migraines daily with Bell's palsy
- Severe body/muscle twitching non-stop
- Severe fatigue
- Brain fog
- Joint pain
What is the biggest way that Lyme has affected your life?
I can't work, and I can't take care of my children. I'm in pain everyday. It is debilitating. The migraines and fatigue are so bad I can't even get out of bed. My short term as well as long term goals have been set aside. I had to stop going to college for my 3rd degree. My memory is shot. My 10-year career is gone. My relationship with friends and family no longer exist. All I have are my kids.
What do you wish people knew about Lyme Disease?
Lyme disease is literally killing each one that is infected slowly. If not physically - then mentally. This illness is so debilitating and there's no help for it in the healthcare world. Insurance companies don't see it, your doctors don't believe it, and your family doesn't want to hear it. It is so expensive to find help or someone that believes your test results. I have literally lost everything to this disease. I refuse to lose my life to it as well. I was a hard-working woman with two jobs and attending college for my 3rd degree. This disease has literally stopped me in my tracks - just one day waking up and being so sick that I can't function. We need help with Lyme disease from every aspect of the health community.
Any advice for someone newly diagnosed with Lyme?
Become your own advocate right away. If a doctor you see doesn't believe in you, or gives you that look, do not make another appointment and find another doctor. It will be very expensive to keep yourself well. Your money may be gone, but at least you will still have your life. Keep pushing - the days will be hard. Help will be hard to find, but you'll get through this horrible disease!
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
Every chance that I get I do something with my children - whether it's a picnic in the park so I can sit down and be in the shade or just going for a car ride to get out of the house on the days that I'm bedridden. When I get off all these IVs I will become a beach bum again and I will be back to work waiting for my day to travel the world!
To find out more about Kim's journey, you may find her on Instagram as @wait_thats_kimmie.