Colleen M. from Connecticut
Updated: May 3
How long do you believe you have had Lyme?
I contracted it at age 24, but I am no longer ill.
How long did it take you to get a diagnosis?
Approximately ten months.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Yes - an internist, rheumatologist, and infectious disease doctor.
Anything else you would like to share about trying to find a diagnosis?
All of this occurred in Massachusetts in the early 1980’s. Even with the classic bull’s eye rash, doctors were stumped. I received a call from the Department of Public Health who asked for my cooperation in documenting my symptoms.
How long did you treat Lyme for?
I was given a choice of hospitalization for IV treatment or an intramuscular antibiotic once a week for 3 weeks. I chose the latter. The major symptoms went away, and I went back to life full tilt and then some...The bottom fell out about 9 years later.
Now I have go back to, “How long did it take you to get a DX?” because a whole different clinical picture presented. It took another 8 years before I could find a doctor to treat me for chronic Lyme Disease. I was instead misdiagnosed with Chronic Fatigue Syndrome.
Do you have any coinfections?
What types of treatments have you tried?
Before going to intravenous Rocephin, I tried long-term oral antibiotics as well as Plaquenil.
List up to 5 of your biggest (past or current) symptoms:
Chronic flulike symptoms, profound fatigue at times, feeling out of breath talking, and brain fog. Before my initial treatment, I had joint pain.
What is the biggest way that Lyme has affected your life?
I was pretty disabled. I believed I had Chronic Fatigue Syndrome and that this would be my new life because chronic Lyme or under-treated Lyme did not exist back then. (Maybe it still doesn’t?)
Pulling self-esteem from my accomplishments was not an option. There was mourning, moments of disbelief, and fear. But there were good hours and joy and hope...and it sounds corny, but seeing, really seeing nature, and love around me. There was no future to strategize about. I was 33 years old. Eventually, with all that rest and disengagement from the ego, my body began to heal itself. I was far from well but the spirochetes were sleeping.
To answer the question more directly: Lyme taught me to be in the present moment. THE CURE, HOWEVER, DID NOT COME UNTIL A LYME LITERATE MD AGREED TO TREAT ME.
What is one thing you wish people knew about Lyme Disease?
Lyme is one of the invisible illnesses. You can prop yourself up and look pretty good…. for an hour or two, maybe... and no one would know the difference. Meanwhile the physical, emotional, and financial costs to patients and their families can be devastating.
To the medical community. I am living proof that chronic Lyme Disease exists and can be cured. If I had listened to most of you, I would not have experienced the richness that was the last 14 years of my life.
Any advice for someone newly diagnosed with Lyme?
Fight for your treatment. No one else will.
Put those spirochetes to sleep with rest and disengage from your ego (the part of your mind that’s yapping at you all the time!). Ask for divine guidance. We are never alone. Even if we feel like we are times.
Your true friends will trip over themselves wanting to support you in any way they can. You have to tell them how.
In terms of the public: It is freeing when you reach a point of no longer feeling you need to explain yourself. Not everyone needs to know your story. Its draining telling it. Lyme Disease is not who you are. You know your limits. Honor them.
Fun fact time! What is your favorite thing to do in your free time?