Lyme Disease Stories

Valerie Stauffer

I am a Lyme disease sufferer. I was infected in approximately 1992 in Northeast Indiana (Fort Wayne). I suffered for approximately 10 years with diagnosis that ran the full gamete of MS, CFS, Fibromyalgia, Mono, arthritis (unknown origin) etc.

Then in 2002, I actually lost my vision and an eye surgeon is the one who ordered the Lyme test. I was CDC positive and yet was told that it doesn’t need to be treated because I had been infected for so long that there isn’t a treatment.
Valerie is willing to serve as an online encouragement coach for any of our members who may want to run or walk in the Mini-Events!  I am thinking we can start a sub-group on FB where runners can communicate and cheer each other’s efforts. I have been in a wheelchair 4 times, I have permanent nerve damage, confirmed arthritis, been bedridden 2 major times, I have made it my goal to bring awareness to this debilitating disease.
Throughout my journey, I have sought ways to be true to myself, despite the physical and emotional barriers of Lyme and co-infections.  My passion is running! When I run I feel free; free of the ongoing blood tests, doctors appointments, infusions, medication, & symptoms. I have gone from being in a wheelchair to running (and finishing) races, including the 2015 OneAmerican Indy 500 Mini-Marathon. All 13.1 miles of it!
My healing efforts continue and I look forward to helping others with Lyme and returning to Indianapolis for the 500 festival again in May 2017!


Susan Coleman

“Frightened and relieved was how I felt after hearing my diagnosis.”

In June of 2012, after experiencing significant neurological symptoms
— including loss of muscle control, Bell’s palsy and speech
impairment — Susan Coleman was diagnosed with Lyme disease.

While the diagnosis of Lyme disease was frightening, it was also
appreciated, as it allowed Susan to seek treatment for the unexplained
symptoms that had plagued her during the past 17 years.  Despite
seeing specialists in internal medicine, immunology and rheumatology,
Susan experienced inexplicable joint swelling, immobility, pain and
bruising, mysterious inconsistencies in liver function, suppressed
immune function, extreme fatigue, memory loss and other symptoms.

The specific initial infection date is unknown, though Susan believes
it may have occurred in 1996 at a southern Indiana campsite that was
overrun with thousands of freckle-sized ticks.

With no diagnosis to explain her continuing physical issues, she
continued to move forward in her career and in academia. In 2010 Susan
completed a master’s degree in Informatics at Indiana University,
taking part in numerous special projects and overseas research.
Despite frequent illness that at one point required her to go on bed
rest for 9 weeks, she also remained active in the community,
supporting local sustainability issues and participating in local

In the spring of 2012, Susan received another tick bite in Monroe
County, followed by a rash consistent with the bacterial infection
Bartonella, a common co-infection of Lyme. The steroid treatment
prescribed by her former doctor suppressed her immune system even
more, allowing dormant Lyme bacteria the opportunity to re-emerge.

Shortly after the 2012 bite, while experiencing dramatic neurological
symptoms, Susan visited the emergency room but was sent away without
treatment despite visible symptoms.

Less than 24 hours later, she saw a Lyme literate medical doctor who
began treatment immediately. Having tried strong rounds of oral
antibiotics (much to the dismay of her digestive system) and herbal
protocols in the months that followed, Susan started intravenous
antibiotic therapy in April 2013 and saw significant improvement over
the months that followed.  Although she is not yet able to return to
her beloved profession, she continues treatment and remains hopeful
for that day.

Susan adheres to a strict grain-free, dairy-free, sugar-free,
alcohol-free, caffeine-free diet with minimal processed food.  Of
course Susan’s bubbly, bright, can-do personality shines through, even
in the face of this debilitating illness. Because she has lost a
significant amount of weight, some people don’t even recognize her.
Her spirits were lifted when an old friend came around a grocery aisle
to tell her they heard her laugh across the store.

Susan is the co-founder of Indiana Lyme Connect, serves as the
secretary to the board of directors and hosts the Bloomington Support


David’s Story

Watch David’s story and fight with Lyme Disease