by Ann Maher

I am from Kilkenny, Ireland and I never thought that I would be writing this Lyme disease blog in my 70th year.

I decided in 2022 to write a book about my journey with Lyme disease to highlight the devastating complications I have had, and hopefully make sense of the reasons why I and so many other people with Lyme disease have suffered for years without an accurate diagnosis or adequate treatment at home here in Ireland.

“Lyme and Co, Me and Us” is my true story of being ill for the past 28 years, ever since a trip to New Jersey in 1995 for my nephew’s wedding.

It is also the story of many Irish Lyme disease patients I’ve been in contact with over the past 20+ years.

My story includes going from consultant to consultant from 1995 to 2003, trying to find out what was causing my very strange symptoms, and not being believed at these appointments, despite having had severe Bell’s palsy since February 1997. (My eye stayed open night and day for nearly seven months.)

Many negative inaccurate results for Lyme disease testing followed. Finally in 2003, we borrowed money from my local credit union and I traveled to Flamett, Switzerland.

There, I was finally diagnosed through blood tests done in three different countries—Switzerland, Germany and the United States—and a SPECT scan in Basle Hospital. Those results were NOT recognised here in Ireland, except by my GP.

I was diagnosed with Lyme disease, Mycoplasma fermentans, and vasculitis on my brain and I was found to be at high risk of stroke.

Ignoring “foreign results”

My GP followed advice regarding antibiotic treatment from my Swiss doctor, when my consultants did not recognise my “foreign results.”

Part of the problem—28 years ago and still today—is inaccurate testing and inadequate treatment. There is little knowledge in Ireland of an infectious disease often thought to be an American thing, despite tick-borne diseases having been recorded in Europe for many decades.

Last year, I traveled to Germany to have procedures done on my jaw and gums by a maxillofacial surgeon. Who knew I could be pain-free when infections were removed after all these years?

Sadly, nothing much has changed for us Irish Lyme disease patients, in all the years since I first became ill. Except we now have one—yes, ONLY one—consultant in the whole of Ireland, who helps patients from Ireland and abroad get properly diagnosed and prescribes adequate treatment.

I met Dr. Jack Lambert for the first time at the 2016 Tick Talk Ireland Lyme Disease Conference, which I organised with help from Dr. Armin Schwarzbach. Dr. Lambert’s presentation that day was a breath of fresh air for Irish Lyme disease patients. No doubting that his patients were ill, because he listens to and believes his patients and checks their full medical history.

Dr. Lambert, Dr. Armin Schwarzbach, and Dr. Rixecker have kindly shared their perspectives on Lyme disease with me, which I have included near the end of my book.

For many years now, we Irish patients have been trying to get the HSE (Health Dept) and government to understand our complicated situation, but it is falling on deaf ears.

And foreign results from specialised labs are still not recognised here.

Much work remains!

Click here for more information about Ann Maher’s book.