Lyme Disease in Iowa
by Geri Fosseen

My experience with Lyme disease actually had two beginnings - almost four years ago when my current symptoms began, and then, I learned later, either ten or twenty years previously when I was most likely infected.

Looking back now, the patterns are there...the unexplained minor illnesses, the aches and pains, concentration problems, and of course, now all those unexplained rashes seem so obvious! However, the real beginning for me was after I had my gallbladder removed in January of 1994.I've since learned that this sort of beginning, after a surgery such as laproscopic gallbladder removal, is a somewhat commonplace start for others as well.

My stay in the hospital was two weeks instead of 24 hours, as there were complications they couldn't explain. Then, when I was home recuperating I developed full body chronic pain, and since February of 1994 I have not had a pain free day, hour or moment. 

It took a year and a half and over 30 doctors in many states before I received a diagnosis of Lyme disease and began treatment. Before my diagnosis of Lyme disease, I was also diagnosed with Reflex Sympathetic Dystrophy (RSD), which is a pain syndrome affecting the sympathetic nervous system. I decided to attend a RSD Pain Rehabilitation Program for six weeks at the NIH Outpatient Centers at Bethesda, Maryland.

About three weeks into the program, the doctor called me in to say that I was not progressing as well as he had thought I would. Well, you all know what usually comes next - I was sure I was going to get sent to another psychiatrist! However, I will always be grateful for what this doctor said next, and I consider it the turning point in my quest for a diagnosis. He said, "I think I may have missed something. I've seen this happen before, and I think you might have Lyme disease. I'd like you to see a doctor I know near here - if you have Lyme disease, she'll be able to find it and help you."

Two days later, I was in the office of the most wonderful doctor who asked me questions that I had never been asked before, not by over 30 other doctors! After two hours of talking, just talking with her, she told me she was pretty sure I had Lyme  Disease.

She said she'd run the tests, but since they were so inaccurate she was going to start me on Doxycycline right away and we'd see what happened. My Elisa came back negative and theWestern Blot was borderline, but she continued to treat me, long distance, for two years.

Eventually, she felt she didn't know what else to do for me and referred me to a very well known Lyme disease physician on the East Coast whom still oversees my case now.  I've been on various antibiotic treatments for 2 1/2 years now and although I had one period of time where I was improving, my IV line had to be removed and all improvement was lost.  They tell me the best I can hope for is to return to 50% of my previous health and abilities, and only after at least six months to a year of my current treatment (IV Claforan via a central line), if that works.  In addition to my constant debilitating pain, I have neurological damage, and a full array of other symptoms typical of Chronic Lyme Disease.

I've been very, very fortunate to have a great network of family and friends that support me. If I could clone my husband and send one to each of you, I would - he's the absolute best. My family is in California and is very supportive of me, ready to be wherever I need them at the drop of a hat. My husband's family lives right around the corner from us and are frequently called upon as well!

I also work with a therapist who specializes in chronic and undiagnosed illnesses - I strongly recommend such a therapist for everyone that can find one. I also recommend for those of you who, like me, are homebound, that you put an ad in the local paper and hire someone to drive you to doctor appointments, errands, etc. I recently did this and it's a pleasure - to not have to be constantly asking for favors and just be able to go and do things again when you want to is so freeing!

This year, in my state of Iowa, I helped to start a new support group (of which I am Director) for patients, families and friends of Lyme Disease. In the first three months that we existed, we greatly raised awareness in our state. My story was written up in the local Ames, Iowa newspaper along with another patient, and an article on symptoms and prevention. We were given the opportunity to speak about Lyme Disease on talk radio for an hour in June, then again for a short time just before the dangerous July 4th weekend, and again in August with Karen Forschner as a guest - though this last show was cut short due to phone troubles. We received over 50 legitimate callers looking for help in our state after that first radio show, as well as many, many others after each additional appearance. On the first show, we promoted a guest  speaker at our June support group meeting, a state entomologist who is highly Lyme-literate.

Over 50 people attended that meeting. Two local television stations accepted my invitation to attend and a promo about the meeting was aired on our local CBS station.  Even a State Representative attended!  These turnouts are pretty impressive when you consider that "we don't have Lyme Disease in Iowa"!!!

I am dedicated to the spread of accurate information regarding this poorly understood disease. As a member of the Iowa Lyme Disease Foundation, I am learning more every day about how to enact changes to benefit Lyme Disease sufferers and I'm looking forward to all that we, together, will accomplish through the Lyme Alliance.

Epilogue

Recently, my grandfather passed away after a long illness. This was, understandably, a difficult time for me and for my family but I'd like to share with all of you something that made it a little easier. In the obituary, my family asked that donations in my grandfather's name be made to the Lyme Alliance Research Fund. It was a simple gesture, but one that meant so much.

So many times during my illness, my grandfather would say, frustrated, "I just wish there was something I could do for you, Geri." For me, even though his passing was so painful, I felt like we had somehow given him that chance to help. I wanted to tell all of you this because it's something you can all do.

If you have a will, please put something in it saying that you would like donations made in your memory to further Lyme Disease Research. If a family member passes away and has no affiliation to a particular charity, please remember the Lyme Alliance. If you need assistance, the Lyme Alliance can help. There is precious little good that comes from death, and it's a difficult thing to think about, but as someone who just went through this, I wanted the chance to say that this is an important opportunity to help all Lyme disease sufferers, and for me at least it was a comfort in a difficult time.

Memorial contributing may be made to the Lyme Alliance, Inc.,  P.O. Box 454,  Concord,  Michigan  49237

For more information on Lyme disease see: Lots Of Links On Lyme Disease

Last updated on 29 December 2000 by
Art Doherty
Lompoc, California
doherty@utech.net

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