• Lyme Disease Stories

Michaela H. from New York

Updated: May 3, 2020

How long do you believe you have had Lyme?

I believe I have been infected for almost my entire life. The first strange symptom that no one could explain showed up when I was a toddler...The next symptom occurred when I was 15. But I didn’t get sick to the point where my life was really affected until the day after my 23rd birthday. That day, a switch flipped and I got very ill, very quickly.

How long did it take you to get a diagnosis?

It took 2 or 3 months after the day that I got very sick, and it took another 2 months before I was firmly diagnosed.

Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?

Oh, yes. Many. I saw maybe 10 doctors before getting the diagnosis. I saw many neurologists, an ENT, a gastroenterologist, several general internists, an infectious disease doctor, and a rheumatologist.

Anything else you would like to share about trying to find a diagnosis?

It was a very nerve-wracking experience and I found doctors were eager to avoid giving me a diagnosis of Lyme. It definitely showed me how little knowledge most doctors have about more chronic or late-stage forms of Lyme Disease.

How long have you been in treatment for Lyme?

I’ve been in treatment for Lyme for nearly 2 years.

Do you have any coinfections?

Yes, I have Babesia and Bartonella.

What types of treatments have you tried?

I’ve tried antibiotics and many months of alternative forms of antibiotics (such as intravenous hydrogen peroxide and colloidal silver). I’ve seen several “healers” who specialize in spiritual healing, herbal supplements, ozone therapy, biomagnetism and bioresonance machines.

List up to 5 of your biggest (past or current) symptoms:

General inflammation (a constant feeling of flu-ishness), severe head pain, neck and back pain, fatigue and insomnia.

What is the biggest way that Lyme affected your life?

It has completely taken any sense of normalcy away from me. I had my whole life ahead of me, was living in my own apartment in the city, working my first job, exercising every day, and had a vibrant social life. I had to leave my job, move out of my apartment and back into my parents' house, I cannot drive, and I lost my entire social life. It has taken my independence from me and really transformed my way of life.

What is one thing you wish people knew about Lyme Disease?

I wish people knew how many are affected by this disease and how our community needs funding for research to find accurate diagnostics and a cure! There isn’t any funding for research and it is a rapidly growing and devastating disease. This needs to change.

Any advice for someone newly diagnosed with Lyme?

Find a doctor you trust. Try to find some patient testimonials to base your decision on while choosing a doctor and ask a lot of questions. Never forget your right to know what to expect from treatment and that your doctors should be paying a lot of attention to you throughout this process. Maybe most important: remember that treatment goes differently for everybody and you won’t necessarily heal in the same time frame as somebody else or from the same treatments. Just keep going! Don’t give up!

Fun fact time! What is your favorite thing to do in your free time?

I love to travel! Especially with friends...Before I got sick, it was my favorite thing to do and I really look forward to traveling more once I am healthy again!

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