Tuesday, August 21, 2012

And this is how it began.....



I created this blog because I want to be able to help people who get diagnosed with Lyme Disease, co-infections and all that comes with it. I remember how little I knew in the beginning and how lost I felt. This experience has changed my life and I have learned so much in every aspect of life.

 If the words I write in the upcoming days could help even ONE person, whether it be with diet, ways to cope with the disease or anything at all, I would be thrilled!! My first entry will be my story.

My name is Janet, I am a 42 year old Wife, Mom of four and Grandma of one. Up until the age of 36, I was healthy. When I say healthy, I mean healthy....never in my life had any health problems. I ate very healthy, lifted weights and did cardio 5-6 days a week. I was fit, strong, and full of energy. Life wasn't perfect, as it never is, but very close. Little did I realize what lie ahead....

In September of 2006, I began to get episodes of being lightheaded. They would come and go. Not too bad, but I would make myself a bowl of oatmeal and as I carried it from the kitchen counter to the kitchen table, I would drop it and watch it crash on the floor. This happened 3 or 4 times, I attributed this and being lightheaded to working out quite a lot and maybe needed extra nutrients.

 Then, I began falling down my short flight of 8 stairs, and I thought I was just being clumsy. Continued my daily life, until my fourth fall, when I had hurt my back pretty badly and had to go to the ER for an x-ray and take time to rest and heal. Within one week, I woke up with a gnawing pain in the center of my chest. Thought it was heartburn, took some antacid and went back to sleep. The pain got worse and worse, so bad that I thought I was having a heart attack.

 I went back to the ER, my heart was fine...but my stomach was not....I had 6 bleeding peptic ulcers and lost 2 pints of blood. The Doctors had NO explanation as to what caused these ulcers. A mystery. I was sent home with 3 prescriptions, and healed within a couple of months. What I thought was a freak incident was not at all....later I would come to realize that these were my first symptoms of Lyme.

I did heal. However, it was discovered in the hospital that my thyroid was not working properly so I was put on Synthroid. Also, my blood pressure had begun to run low, again I thought nothing of that.

 I felt pretty good again, until 2008 when my right shoulder tendons were "torn".....I went through a very painful surgery and 10 week recovery period, it took quite awhile to heal, almost a year, when my left shoulder began to hurt.....I refused surgery that time because I didn't want to go through the pain and rehab all over again.

Fast forward to July of 2010....I was driving home with my family from Michigan and my left hand began to get numb. I thought it must be from browsing on my smartphone. When we got home, it got numb and tingly again, as did my entire left arm, so back to the ER I went - fearing heart problems or stroke. A complete workup was done and all tests were fine, probably a pinched nerve they said. I went home.

In the days to come my symptoms got worse. Pains in my hands, feet, muscles all over, body twitching all over, chest pains, numbing/tingling in the extremities and face, sometimes I felt like my head was clogged, some foods were bothering me, (I'd never had allergies) and I found myself crying in bed.


Desperate and searching the Internet for answers since the Doctors had none, I found a Breast Implant Sickness support forum. I had implants, and all of these women had my symptoms, so I was so grateful to have found support!! I found a great Surgeon and quickly scheduled a date to have my implants removed, an expensive procedure that my insurance would not cover as they did not believe the implants were making me sick (although many women do get sick from their implants). I woke up from the surgery in tears of joy, celebrating the fact that the culprits of my ailments were gone and I was going to get better! I did not.....

My symptoms continued to decline. My surgeon told me that it would take time for everything in my body to settle down after the implant removal, still....I had an instinct there was something more. In the days to follow I saw several doctors and several tests were performed. My regular blood work readings were perfect. My tests were perfect. Only imperfections in my rheumatological blood work.

 I was diagnosed with nothing that could be certain, but I "probably" had: lupus, sjogrens, vasculitis, fibromyalgia, and possibly MS. I refused to believe any of this, and I refused the steroid drugs the Doctors wanted me to take.

I was given the name of a Naturopath that was near me, who did Electro Dermal Screening. I was skeptical, but desperate. I went to see her, again, out of pocket. She tested me and said, "Janet, your problem is not what the Doctors told you....your problem is Lyme disease."  Hmmm.

I searched and found some Lyme support groups on the Internet, had no idea what to do or what Lyme Disease was all about. I took the advice of a few "veterans" and went to my PCP and asked them to test me for Lyme. IgM Band 23 came back positive, that was it, that was all I needed. I had Lyme Disease. And so the journey started.

1 comment:

  1. Thank you for sharing your story! Your journey is inspiring, and I hope many will be able to find solace in relating to it. I wish you the best of luck on your road to recovery.

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