Prologue

I recently went to Time Out for Women where I heard the most touching story. The speaker told about how she got married later in life. She was 43 and having her second child. Like all expecting mothers, she thought about all the things that could go wrong with the baby. I don’t know a mother who does not have the same thought. Finally she delivered a beautiful baby boy. The Doctors initially announced that he was perfect but she was still worried. About a month later the Doctors told her they were concerned and asked to run some tests on the baby. To her worst fear, the tests came up positive. She learned that her baby would never have a ‘normal’ life and it would face many challenges. She said all of a sudden the worst thing ever was happening to her. She related that she left the doctor’s office with tears in her eyes. She went to the car and strapped the baby into the car seat then sat and looked at that precious baby. She realized that nothing so beautiful could possibly be the worst thing ever

The worst thing ever may be happening to me…My children are fine but I have spent the last year chasing what has become for me the worst thing ever. I have bounced from specialist to specialist and from test to test. The results according to all who have examined me and read my test results are that I am healthy – the test results are almost always within normal parameters. So why do I feel so awful? Why are there days I can hardly focus to cook, or days I am so tired I cannot keep up with the house cleaning? Why do I have unexplained pain that lasts for months? Why could I not sleep for months? Along the way there are days I feel almost normal again. I never know what the day is going to bring until I get out of bed. Most days I will feel just fine and then exhaustion hits like a ton of bricks. I could go on and on. Here are the things I do know: I know that I am 65 pounds (and counting) lighter that I was a year ago. I know that whatever it is, it comes in episodes, but the episodes are not predictable and I never exactly know what the group of symptoms will be.

Two weeks ago I went to the ER because half of my face going numb. The ER ruled out the a few things like a stroke and suggested maybe I had early Bells Palsy. I was sent home without any treatment.

Whatever I am suffering with, it is now in my nervous system. The frustrating truth is that nobody seems to see the big picture about what is going on. This is affecting my entire body.I am not going to spend hours rehashing all of the things that I have been tested for. I have just spent a lot of time praying that Heavenly Father would lead me to someone who would help me. After bouncing from doctor to doctor, I eventually turned to alternative medicine. I first did acupuncture and it helped for a while. But after several months even he became baffled as to why my body was not responding to the normal treatment. I tried more doctors and endured more tests, but to no avail. I finally started seeing a naturopath. I would have never chosen this route had I not been so frustrated with doctors saying they can’t find the cause of my symptoms.

They say desperate times call for desperate measures. Deciding to go to a naturopath felt like a pretty desperate measure at the time. Luckily for me I have a good friend who had amazing results with this naturopath. That made my choice a little easier. The naturopath has been working with me for several months now. Although I am much improved, I am still having episodes that take me out of commission - like the one that landed me in the ER I mentioned above.

This past Monday I called the naturopath in utter frustration and she gave me some great news. She told me that she attended a conference recently and she now thinks she knows what we are dealing with! She explained to me that my symptoms coincide with Chronic Lyme Disease. I knew Lyme disease was a tick bore disease but I knew nothing about Chronic Lyme Disease. She reassured me that this disease is treatable. People she knows have made a full recovery.

I had no idea the can of worms it was going to open in my life. As of today, I have mixed feelings about Chronic Lyme Disease. I started to research what Chronic Lyme disease was. I found that not very many in the medical community recognize the chronic form of Lyme disease. I learned that Lyme disease was only discovered in 1982 and the chronic form wasn’t identified until later. That is not all that long ago. I learned there are no conclusive tests for Chronic Lyme Disease. With a lack of reliable testing it becomes a clinical diagnosis. The doctor typically has to make the diagnosis based on symptoms. There is a big rift between members of the medical community as well as government organizations like the Center for Disease Control and Center for Infectious Diseases. Most insurance companies do not recognize the diagnosis therefore they will not cover what few treatments that are out there. I would much prefer to have something commonly accepted, easily treated. Black and white, cut and dry is not what I have.

I started looking for doctors that knew something, anything about Lyme Disease. I stumbled upon a retired MD only about 30 minutes from my home that specialized in Chronic Lyme Disease. He is not actively treating patients anymore because of his age but he stays up to date with the issues. The sweet gentlemen spent over an hour of the phone with me. He listened to my medical challenges and experiences over the past few years. When all was said and done he agreed with what the neuropath had suggested. There is a very real possibility that I may be dealing with Chronic Lyme disease. He then started filling my head with a lot of information. I am sure I missed most of it. He was so kind and concerned that he took time to call a doctor he knew who treated Lyme to see if he was accepting new patients. Unfortunately, the other doctor was not taking new patients.

In my research I found there is more than one way to treat this and the treatment needs to be customized to the patient. I really thought that I wanted a regular MD to confirm the diagnosis. So far this the closest I have gotten to putting a name to whatever is happening, I am not going to give too many gory details as to how and why I came to my decision, but for now my naturopath has been my greatest ally and most informative. She is ultimately the most confident that we are heading in the right directions and we will run some of the tests and see what results we get.S

That leads me to my new blog. I called her today all FREAKED out about all the things I have read and all the things the people on the Lyme group were telling me. She ordered me off the internet. I think as much for her sanity as for my own sanity;-)). The problem is I cannot just sit around. Someone has given me hope. Hope that I don’t have to continue grabbing at straws. I have an overwhelming need to do something proactive. This is my new project, to blog my journey. Some of you may enjoy following this journey, and some of you this may be the only thing you ever read, but for me it will be therapeutic.

Ultimately nothing has changed, I don’t have an answer, but I finally have a direction. That is more than any doctor has been able to offer in over a year.I decided not to make the blog private, mainly because I don’t like to sign into other people’s blog. For me to feel comfortable staying public you won’t see any locations or doctor’s name on this blog, but those who know me can always ask.

So I say…let the journey begin. I am looking forward to someday when I can write on the final page…And she lived happily ever after. But until then you are welcome to follow me as I fill the pages in-between.