Life After Lyme Disease

For the first time today I experienced a tingly feeling in my hands and then my arms. This is a very disturbing development. I have a scary feeling that this may get worse before it gets better.

I found a new doctor on Long Island that was highly recomended to me but he cannot take me for another two months as he is in high demand with people coming from California and all over to see him. This really sucks, I do not want to wait two months I want to see this Doctor now. So looks like I’m stuck with the first doctor for a bit londer and it looks like I may be on IV antibiotics for 3-4 weeks to see if it helps.

In my reasearch to find a good Lyme disease doctor I found many disturbing things

Had my second appointment with the infectious disease specialist today, and what a disappointment. I told him that I am not feeling better and my joints have actually gotten worse. The Doctor said that four weeks of Doxyciclene is plenty of time for it to kill the bacteria. He said that if I’m not feeling better it is because my body does not realize that the Lyme is gone. Then he proceeded to tell me to take Aleve (Naproxen) for my joint pain.

I did some reading earlier and found out that the reason Lyme Disease is difficult to eliminate through the use of antibiotics is because it forms cysts that the antibiotic cannot penetrate and hides in these cists. When I asked the doctor about it he appeared not to know anything about it simply replying that Lyme Disease is caused by a bacteria and antibiotics taken over a four week period will kill any bacteria in your body.

I couldn’t believe my ears! This was supposed to be an infectious disease specialist! He’s supposed to know better! But it looks like this doctor is totally useless. He gave me a very strong impression that he knows nothing of Lyme Disease and was basically writing me off.

Looks like I will be searching for a new Doctor.

I had my appointment with an infectious disease specialist today. The Doctor seemed very casual about it, almost like it’s not a big deal. That did not make me feel all that good about this Doctor but I will give him a chance.

He asked me a long list of questions trying to narrow down my symptoms and try to evaluate how far the Lyme Disease has spread throughout my body.  Based on that the Doctor said that he thinks I had Lyme Disease for less then a year.

He prescribed Doxycyclene 100MG twice a day for 30 days saying that it should clear it up fairly quickly. Hopefully it will work. He also gave me a referral to get a cardiogram done to make sure that the Lyme Disease did not spread to my heart. He said it was just precautionary.

I’m really hoping the Doxycyclene will work.

Over the past couple of days I’ve been trying to figure out when I got Lyme Disease. Since I did not experience a rash it is difficult to say with any certainty.

One particular camping trip to Harriman State Park in late spring or early summer of 2007 makes me think that I picked it up that weekend. It was several days after this trip that I remember feeling tightness in my jaw and having a stiff neck for about 5-7 days. It went away on it’s own and I didn’t think much of it at the time.

I usually spend a lot of time in the woods going hiking or camping every other weekend. There is nothing I love to do more than exploring our wilderness areas.

I have always been very careful and usually use bug repellent containing DEET whenever I go to the woods. However there are a hand full of times in 2007 that I remember getting to the woods, realizing that I was all out of bug repellent and going for a hike anyway since I was already there and it would be too time consuming to turn around and go back to try to find some bug spray. Now I wish I had.

I Just found out I have Lyme Disease today. I had been feeling very fatigued for about five to six months and over the last two months began feeling other symptoms like joint pain, weakness, brain fog and constant nausea. It got so bad that I became depressed and lost my appetite. It’s really hard to eat when you are constantly feeling like you are going to though up; over the last couple of months I had lost about 20 pounds.

I was really scared and somehow convinced myself that I must be terminally ill and the doctor will tell me I have three months left to live. When I saw the doctor he seemed very concerned and ran many tests including full blood work and an abdominal CAT scan. Two days after the test I was feeling so sick that I could not go to work again. I missed a phone call and when I listened to my messages it was my doctor; he sounded very serious saying that I should call his office as soon as I get this message. I was terrified. I was convinced that was is it. He was going to tell me that the end is near. I worked up my nerve to finally call him and to my surprise he told me that what was making me so sick was Lyme Disease.

My first reaction was a deep breath of relief. Yes Lyme Disease is a very bad thing and had made me very very sick, but I wasn’t going to die. At least this was something I could fight and hopefully beat. My doctor referred me to an infections disease specialist and I immediately made an appointment for the earliest date available Monday the 11th.

I am starting this blog partly as an outlet for my stress due to this disease and partly because there are others out there in the same situation who would like to hear about my experiences and maybe share their own. For we are not alone and together we can all beat this. I will be posting constant updates here and will discuss my treatment and progress. I look forward to hearing from you.