Kim H. from New Jersey
How long do you believe you have had Lyme?
I've had symptoms of Lyme disease for about 3 years now.
How long did it take you to get a diagnosis?
It took 1.5 years to get an accurate diagnosis.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
I saw my general practitioner (GP), a rheumatologist, an endocrinologist, a psychiatrist, a neurologist, & then switched to a new GP before going to see an Lyme-literate MD to "rule out" Lyme disease.
Were you diagnosed with anything else before Lyme? If so, what?
Originally I couldn't get any diagnosis. Then it was thought to be that I'd had depression, so we wasted about 10 months treating something that wasn't the root of the problem.
Anything else you would like to share about trying to find a diagnosis:
Trying to find a diagnosis was beyond frustrating. It got to the point where I was scared.....scared that I'd never find out what was wrong with me & I'd always have these awful symptoms.
How long have you been treating Lyme for?
I've been treating for Lyme for 1 year 8 months.
Do you have any coinfections? If so, which ones?
I have also been diagnosed with Bartonella & Mycoplasma pneumoniae.
What types of treatments have you tried?
So far I've been in rotated oral antibiotics. My doctor had me taking 1 antibiotic at a time for a few months before changing. In addition to antibiotics, I've also been taking supplements & herbals. Herbals are mostly to assist in the killing of the bacteria, along with helping to rebuild my immune system. I'm also taking probiotics.
List up to 5 of your biggest (past or current) symptoms:
Fatigue, sore muscles (especially upper back, neck, & joints), flu-like malaise, sore skin to touch, skin crawling sensations.
What is the biggest way that Lyme has affected your life?
Lyme has just made me not enjoy life to the fullest. I push and do the things I need to do but there's never any "extra" at the end of the day. While I go about my day, I'm in constant pain. I'd say my quality of life has been affected the most.
What do you wish people knew about Lyme Disease?
I wish people realized the severity of this disease....how crippling it can be and just how widespread it has become.
Any advice for someone newly diagnosed with Lyme?
My advice for a new Lyme patient would be to remember that this is marathon, not a race. Take it slow. Healing the damage that has been done to your body takes time and patience. You won't be able to pop a few pills & feel like a million bucks in a few weeks’ time. After a year and a half, I've definitely seen significant improvement, but I still have a long way to go. Ask your Lyme-literate MD LOTS of questions. Record your sessions with your phone if you’re able to. This way you can go back and listen to the things you may have forgotten were said. Research high and low - but in the end, always confirm with your Lyme-literate MD. There's some good info on the internet but a LOT more fiction than fact.
Fun fact time! What is your favorite thing to do in your free time?
My favorite thing to do when not tending to Lyme issues--watching my kids play sports. I love going to their tournaments and watching them do what they love!