Saturday, October 31, 2009

My Lyme Disease Story

It all started a few years ago....well, that's when I noticed symptoms but my doctor thinks I've been having Lyme Disease since I was little girl. About five or so years ago, I started having panic attacks and anxiety out of no where. I was NOT stressed at the time so there was no reason for this to start. This is where my life takes a nose dive. I was in and out of the ER thinking I was going to die. All of my senses were heightened. I was seeing really bright colors and anything I would smell would make me so sick. I was even a little paranoid. Finally, they admitted me and ran some bloodwork. Of course, nothing was found but elevated liver enzymes. I stayed in the hospital for three days with no real answer as to why I felt that way. I was put on xanex and Lexapro. The panic attacks would last the entire day and by that time, I didn't want to leave my house. I was scared and had to have someone with me at all times. I couldn't sleep in my room because that's where most of the episodes happened. It was awful! The Lexapro finally kicked in after about two weeks but I still had panic attacks AND now, a racing heart about 3 times a month. My doctor didn't understand why I was still having panic attacks. This went on for about two years and then I started having flu-like symptoms with fevers. EVERY THREE MONTHS I was in the doctors office with this. All he would tell me was that it's the flu...or, there's a bug going around. He would give me antibiotics everytime though. I still don't know why but noticed that they would help and I would feel soooo much better. I asked him about Lyme Disease and he practically laughed and said, "We don't have Lyme Disease here in the South." Ummm okay, I guess ticks know when to stop at boarders huh? I was too naive at the time and believed him.

It wasn't until I started getting sicker and having even more symptoms that I started researching. I noticed that I had alot of the symptoms of Lyme Disease. Not only that, but I remembered getting scratched by a kitten and feeling really achy and having swollen lymph nodes the next day. I didn't know it then but I was now dealing with Bartonella which is also known as "Cat Scratch Fever." Ticks also carry this co-infection. 

In 2007, I found a Lyme doctor. He did a Western Blot test and checked for viruses. My test was negative but I had Lyme specific bands. We all know how inaccurate the Lyme test is. I also had a load of viruses including Epstein Barr, which made me so very tired, HHV-6, Cytomegalovirus and Mycoplasma. Wow! I was blown away! No wonder I felt so bad. Well, I just didn't want to believe that I had Lyme Disease and didn't get treated at that time. I felt that if I was still functioning, that it just couldn't be Lyme Disease. Boy was I wrong!! I only got worse and worse each year but I did have months in between that were pretty good. It always made me think that I was getting better or that I truly wasn't THAT sick. This is what Lyme Disease does. It messes with your body real bad and makes you second guess yourself. Some people go years feeling good again then crash really bad.

It is now the end of 2008 and I am just finishing up phlebotomy school. The very last day of clinicles, I got real sick. Thanks God it was the last day because I stayed in bed for three months after that. My doctor thinks the stress from school brought everything back out with a vengence.

At the beginning of 2009, I went in to see that same Lyme doctor so that I could start treatment. After about a month into treatment, I started having neurological problems. My head started jerking, my arms and hands would jerk and spasm and I was twitching all over. I had trouble with words. I couldn't find the right word to say or I would say the wrong word or put two words together. Sometimes, my speech 
was slurred or I'd stutter. I called to let my doctor know what was going on and was told I'd probably have to see a neurologist. Okay, that would be great if only this neurologist was Lyme literate. Remember, they don't believe in Lyme Disease here? I couldn't believe my doctor would blow me off like that. Why didn't he know what to do? I decided then and there to find another doctor. Someone that knew about neurological problems with Lyme Disease. My neuro problems started after treatment so I knew it was Lyme doing this to me.

It is now around March and I am getting worse. I'm having trouble walking and I am in pain all the time. By the end of May, I am pretty much housebound and either in my bed or on my sofa. Each month, I am getting worse. 

I found a new LLMD through a really good friend of mine. This new doctor has been treating Lyme Disease AND dealing with neurological problems from Lyme Disease for 30 years. I just knew he could help me. I made an appointment and we drove 12 hours to get there. You see, it's hard finding a doctor that knows how to treat Lyme Disease so most people have to drive or even fly very far. It's very sad that we have to do this. All doctors should be educated about this terrible, debilitating disease. Many people think that you have to get a bulls eye rash after a bite, but this is just not true. About 40% or less actually get a bulls eye. The rest are left guessing what is wrong with them and these are the people who wind up having chronic Lyme. 

My doctors appointment went great! I feel really good in this doctors hands and feel he knows what he is doing. He thinks I've been having Lyme Disease since I was young and I am at the chronic stage since it has hit my brain. 

I started off with a week of Diflucan for an overgrowth of yeast and now I'm taking Levaquin for Bartonella. Bartonella has some terrible symptoms like rage, outburts, crying spells, depression and the list goes on. It has been really hard and I am in pain alot but making it through. I'm hoping to overcome this disease and at least be able to function again. I will be started on IV Rocephin(Picc line) when I'm done with the Levaquin. I will also pulse Flagyl. This should be interesting. Stay tuned!

4 comments:

  1. Your story is very truthful, I had a cousin who was suffering, and eu is indescribable way ... thanks for the article
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  2. Many persons believe that you have to receive a bulls vision allergy after a chunk. About 40% or less basically get a bulls vision. The relax are left wondering what is incorrect with them and these are the persons who wind up having serious Lyme.

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  3. That is an amazing story! You've been through so much, and you came out stronger. We're thinking that our dog has lyme disease. What are some things we can do about this?
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