Monday, June 15, 2009

Here we go....

My mom clarified something for me the other day when I told her my sun experiement. The sun's effect on my skin is actually a chemical reaction between the UV rays and the doxy, which is why it's not really a burn but weird-ness. Who knew?

The past couple days, I've felt back at square one. I talked to my friend today who has LD and she was like, "I've been having problems with my temperature control."

SO HAVE I!!!!!!!

The past two weeks, I've gone from BURNING UP to FREEZING in a matter of minutes. I seriously walk around with a paper plate for fanning and a jacket. And it's not just my internal temperature. I'll feel fine but my skin will either be HOT to the touch or COLD.

I've also been in a lot more pain during the last ten days. I can only sit in or lay in a position for so long before my muscles and joints hurt. I've also been experiencing my hands, feet, arms, and legs "going to sleep" after being in a position for just a matter of minutes.

Insomnia's back. Without my Tylenol or Excedrin PM, I won't be sleeping, no matter how tired I am.

My "brain fog" has also been a lot worse during the past several days. This usually means I have a hard time finding the right word or stuttering over words. It's like trying to think through sludge.

Probably the most exhausting thing right now are my episodes of adrenaline rushes. Temporal lobe seizures are connected to LD but I can't self-diagnose these episodes as being that or not. Basically, I get the feeling that I'm running for my life with all the physical manifestations - heart pounding, hands shaking, cold sweat and dizziness. But nothing of significance would have happened to trigger this response. The times it's happened is when I've experienced stress of some sort but nothing to the degree that should dump that much adrenaline into my system. They usually last for several minutes but afterwards, I'm exhausted, really feels like I've just heard the worst news ever, and I need to sleep it off.

After this happens, I have to rest.

It's been nearly five weeks since I started my medicine regimen. I think it might be time for a Dr. visit and something different.

Friday, June 12, 2009

I spent the last week at senior high camp. I packed all my meds (even my B-12 injections) and took them faithfully every single day. I knew I couldn't afford to miss a day no matter how inconvenient they were.

The first couple days, I struggled with fatigue but managed through alright. I couldn't sit in the hardback chairs for more then about 30 minutes. I spent a lot of time either standing up or sitting at the tables when my knees couldn't take any more standing. When my back and neck started hurting from that, I moved to the floor. By that time, the speaking was usually over and we were good.

One thing - I got a wonderful massage twice while I was there and decided I needed that more often. It made such a huge difference.

I ran a lot on Tuesday in a game of capture of the flag. I've paid for it since then with fatigued legs and muscles. In the mornings, I could barely make it from the dorms to the main building without my legs hurting so bad and being a little winded.

My feet bothered me the first few days and then stopped itching. I noticed tonight that both of my ankles are extremely swollen and red - not really sure what's going on there. They also feel weak and jell-o like. Who knows.

Vision - blurry.
Focus - blurry.
Brain - a little foggy.

I'm a little worried to see how the next couple of days go. I'm expecting a relapse after expending that much energy over the past five days.

However, I don't regret it. It was truly a life changing experience...more on that on the other blog.

Sunday, June 7, 2009

Allergic reaction to...sun?

My experiment from yesterday (allowing myself exposure to the sun in controlled, limited amounts) has transferred over to today.

My feet are very, very angry with me.

For some odd reason, it's just the tops of both my feet, a space about the size of a dollar bill, that's red, inflamed, feverish, and covered with itchy, microscopically tiny bumps. The hem of my pants brushing against it is irritating.

The only part of my foot that's not irritable are the soles and the thong indention where my flipflops protected the skin.

Here's a picture for proof:

I will admist that I'm enjoying having physical, tangible evidence to post, as if to prove that what I'm dealing with isn't in my head. As those with LD know all too well, 99.9999 percent of the things we deal with cannot be photographed.

Saturday, June 6, 2009

Sun exposure and today's Lyme-related weirdness

Sun exposure:

The biggest part of my initial treatment is 400 mg of doxycycline a day - double the amount of a regular recommended dose to treat infection, etc. It's been drilled in my head that with this high dosage, it is imperative for me to stay out of the sun because the drug makes my skin translucent-like and I could suffer from severe burns if I'm over exposed.

I noticed shortly after starting treatment that my hands and arms were being exposed to sunlight while driving. I tried to take care to cover them but still, they were getting sun. A space about a half dollar size between my right pointer and middle finger began peeling and left brand new (white) skin underneath - enough to garner questions about what was wrong.

But I noticed that the controlled and limited amounts of sunlight did not intensely burn. It actually left me with a really dark tan from my fingers to my mid-upper arm. Talk about a farmer's tan!

So today I decided to test my theory with limited amounts of sunshine to the rest of my body.

I spent about 25 minutes of exposed sunlight (broken up into two sessions) on my upper body, lower body and feet.

My feet and ankles are suffering tonight. They are on fire and they ITCH, which I suspect is a type of allergic reaction to the sun. The rest of my body is handling it okay - I just feel very hot, like I've been in the sun for hours on end...on the lake, to make it worse.

But perhaps it'll be worth it, if I can figure out the right amount of time to be in the sun. It'll be trial and error and hopefully that error won't land me with bad burns!


I've been on my new treatment for about three weeks and I was feeling really great. Today I had a few setbacks.

My brain feels very foggy (a.k.a. Lyme-fog) and my eyesight is blurred. I'm having a hard time retracting information from my mind or remembering things. I've gone to say things today but had to rehearse it in my head first and by the time I was ready to say it, the time had already passed and the other person was probably wondering why I didn't respond.

I had two bouts of excessive adrenaline - I can't really think of any other way to explain it. My heart was racing, my hands shaking, my body felt weak and trembling and I had to think if there had been an adrenaline-causing incident beforehand to cause that reaction. There really hadn't been. These episodes are exhausting.

I watched my neice today and could not hold her for nearly as long as I should have been able to. She weighs about 18 pounds but I could only hold her for limited amounts of time before I had to lay her down. It's a small thing I noticed just because it serves as a plumb-line for my strength.

Despite all that today, it was really a god day. I got a lot of things accomplished and enjoyed getting them done.

Re-infection bite

After being diagnosed with Lyme Disease and Q-fever in March 2008, I was reinfected with this tick bite about two weeks ago. I'm posting this for my friend's and other people's benefit.

This is the classic "bulls-eye rash" surrounding the tick bite - a key indicator that the tick was carrying Lyme Disease. It's necessary to note that 70 percent of the time, the rash will manifest, indicating an LD positive bite. The other 30 percent of the time there is no rash. I cannot remember the specific tick bite that infected me the first time because there was no bulls eye. This time, however, there's no mistaking it.

The Kentucky Cabinet for Health and Family Services reported in January 2008 that the "species of ticks that are known to transmit Lyme Disease have not been identified in Kentucky at this time."

I beg to differ.


The purpose of this blog is to document my own personal journey with Lyme Disease and to perhaps one day be a sounding board and support network for other individuals with this disease.

As those who carry the disease with them know, it's hard for the people around us, even our closest friends and relatives, to truly understand how this disease effects every aspect of our lives. Hopefuly by providing an outlet for our experiences we can support each other and one day bring about the beauracratic change that must take place in order for us to receive the treatment we need.

Please, leave comments, e-mail me - I want to hear from you.