Thursday, September 11, 2008

My Diagnosis

My story is similar to others with Lyme Disease. It never dawned on me how many were traveling the same road. It all starts back in 1995. I went to college with a few goals. I needed to find a church, I needed to learn, I needed to work, and I needed to date. Within the first couple of weeks of being at the university, I started having black out spells. Generally when college students have black out spells, it is accompanied with drugs and alcohol. This was definitely not the reason for my stress. I knew deep in my heart that this was not the case. Eventually, the seizures stopped.

A year or two after the seizures started, I began having these spells. I would wake up in the middle of the night with sweats. Immediately, nausea would hit. Shortly after I would be in the bathroom vomiting. This would happen at least three times a week. The sweats would be so bad that I would have to change the sheets on my bed and the mattress would be soaked.

I graduated college and got married. I kept on having these nightly spells. I was miserable. Finally decided that I had to see a doctor. I drove to Urgent Care feeling dizzy and miserable. For the 2nd time, I got the whole it's stress causing your problems. My husband begged me to go see his doctor. I couldn't see that gentlemen, but I did see his nurse practitioner. For the first time, I felt like someone listened. The thing is though eventually she said it was stress too and put me on an antidepressant. They helped, but my problems were far from over.

In a short time I had two surgeries. The second was a gallbladder surgery. I thought my troubles were over. If I knew then what I know now, I would know that surgery was just the beginning of my troubles. A few weeks after that surgery, I was bit by a tick. I didn't realize it at the time because it was hidden. I kept having this itch. However, my body itched all the time so I figured that was it until I finally decided to look. There it was. A huge blood sucking tick attached to the back of my knee. I removed it and thought nothing of it.

I started having joint pain and exhaustion. I had just turned 30 so I attributed it to that, but I saw the doctor because I saw faint rash on the back of my leg. He said that he would give me two weeks of antibiotics and I would be cured. He noted that the test would more than likely come back negative, but after two weeks of Doxy I would be "just fine." I took the drugs reluctantly and two weeks after I finished, I started feeling tired again. Not just a little tired, I'm talking falling asleep at the wheel tired. My joints hurt, my head ached, and I felt like I was getting the flu. I thought to myself, "Great just what I need. The flu."

I went back to the Urgent Care and they told me that I probably did not have the flu, but a particular stubborn case of Lyme Disease. He gave me 2 weeks of another antibiotic and said that I would feel better. Four weeks later, I wound up at my regular doctor's office. I'll spare you the intricate details, but I wound up having four more weeks of antibiotics for an ear infection. Then when the joint pain did not go away, I was sent to a very insensitive Rheumatologist. (they thought Lupus, Rheumatoid Arthritis or something else, but those tests were negative) When my headaches got worse and I started having muscle weakness, I was sent for an MRI and to a neurologist.

I was on Celebrex and Neurontin for my headaches and joint pain. I started having memory problems, word finding problems, and my exhaustion was endless. I was miserable and my husband finally did some research on Lyme Disease. We found out how difficult it was to treat and diagnose. We contacted a nice lady at the North Carolina Lyme Disease Foundation to find a doctor who was knowledgeable in not only Lyme Disease but other illnesses too. After writing a letter to this man, he called me and said he could help. I wasn't hopeful. I was sure that he would say it was in my head too.

But that morning, I went to his office and he listened to me for over an hour. He asked my husband and me numerous questions. We answered. I'll never forget the words out of his mouth, "Jennifer, I know what you have and I can help. You have Lyme Disease. It is written all over your forehead. I will tell you why all of your test results have been wrong and we can work on a plan together to fix you." I'll never forget how I felt when I stumbled out of his office for the first time. I felt hope. For the first time since 1995, I knew that someone cared and listened. He put all the pieces of this convoluted puzzle together.

Since the end of February 07, that physician has been my rock just like all other Lyme Literate MD's have stood by their patients to treat them. LLMD's put their medical licenses on the line every day just to treat LD patients. They research every day to treat it with the latest techniques. I consider the people in that medical practice my family. They have given me my life back. I remember barely walking into that office and now I can run up the stairs to his office. The last 18 months of my life have been miserable, but the next 18 months of my life will be the best that I have had in 13 years thanks to the my doctor and his wonderful nursing staff.

I can't wait to finally kick this disease. Unfortunately, I am also dealing with some co-infections and candida (yeast) due to all the years of antibiotics. However the experimental treatment I am doing will help with all of those issues. I owe my life to Dr. P (and his wonderful nursing staff)

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4

Thinking about all of those lives that were lost 9/11/01 and all the heroes of the day. God Bless Each and every one.


Anonymous said...

Living w/chronic lyme is not really living. The only treatment that has REALLY helped me has been declared illegal in my state. I was infected in 1988, not in the wood but in a suburb doing yard work. I found the tick and removed it. I was not diagnosed until 1998.
In the midwest, many doctors still deny that Lyme even exists and especially not here. It's everywhere and the symptoms can be anything. A microbiologist discovered more than 110 subspecies of the organism, many very virile and others very mild. It depends on the strength of the infection in the tick and that of the infected person's immune system and ONLY then can you determine how that person should be treated. I feel that each day I wake up is a gift for me. The lady who spoke about her life in the documentary "Under Our Skin" died a few months ago at 51. Her heart was so compromised that she just didn't wake up that day. What a blessing for her. I hope I am as lucky. I do plan to donate my body to a facility that is doing research on lyme at that time.

Robb said...


My wife found your blog. (very nice) I have lymes or so we think many Docs and pick lines later I still feel very sick. Im in Charlotte and I wanted to see if you mihgt telll me who your LLMD is? I would go to the ends of the earth to get well. I have sot just been put out to pasture on oxicotin and percocet for pain. You have very strong faith. Mine seems to be being tested. So if you could email me or call me with you LLMD s Name and number I really need some help and hope this hs been a long 21 months with no end in sight, going back to seee my infectious desies doc on thursday. I dont care where I have to go on to geet ride of the mean of stuff.

Robb Walker