Herx is a four letter word.

Herx reaction - when existing symptoms are stirred up and make you feel worse before getting better. That's the story of my life for the past 10 days. Everything hurts. I have fevers. I'm exhausted, well more than usual. I'm lightheaded. The blurry spot in my left eye is back. My toes are going numb.

I know I'm supposed to see this as a good sign, but it's still hard to live through it. At least I am pretty sure of what caused it. I'm taking Tindamax in addition to the IV antibiotics and that seems to be what is kicking my ass. Five more days of this medication. Yes, I'm counting.

In case that wasn't enough, I now have to take a mega dose of vitamin D2. It seems that my vitamin D just continued to decline so we had to try another route. What I was taking over the counter was D3. The D2 is taken once a week, and hopefully causes a shorter reaction time than taking a daily dose. I can't say that I'm not having any reaction to it... I've still been getting migraines and lightheadedness, but the reactions do seem to be less than with the OTC version. So, I'm working my way through it and hopefully the reactions will continue to decline while my D level rises. And at the end of the day, the increase in D should contribute to feeling better.

Sitting in the IV suite with others has its advantages because I have now found that many of us have low levels of vitamin D, and one other person also has an allergic reaction to it as well. It's nice to know I'm not alone.

It's been a while

Most days I'm too exhausted to write. Or too nauseous. Or too achy. It was a long road to get this sick, and it will be a long road to recovery.

For now, I'm celebrating a minor victory. My health insurance didn't want to pay for the medication that my doctor wants to treat me with. It took about 3 weeks to get the approval, and then they only approved 20 treatments, instead of the 60 that my doctor wants. Yesterday, the office staff spent an hour on the phone with my insurance company, and got approval for an additional 30 treatments. Still 10 shy of what my doctor wants, but we're getting there!

Otherwise, yesterday was pretty crappy. As if I don't have enough going on, I've come down with a cold and sore throat. Lots of body aches and pains, too. Today is starting off a little better. Hopefully this keeps up.

Day One

Today was interesting. The doctor has me on 2 medications. The first is the same one that I was on last time. The 2nd is supposed to help the first one work better. Although the first one took longer than the usual hour to drip (just to make sure I didn't have a reaction to it since it's been a while), there were no problems. The 2nd medication needs to drip for over an hour to avoid reactions to too much at once. Mine took closer to 2 hours. And I'm glad, because I guess things could have been worse if it had gone faster.

About 10 minutes before it was done, I started to get itchy. I didn't really think too much about it. Lots of things can make me itchy. But one of the nurses insisted I take benadryl before I left. She said I looked a little flushed, which is one of the side effects. I didn't really want the benadryl since it makes me so sleepy. I was worried about driving home. I'm glad I listened to her though.

A few minutes into the car ride, the itching got much worse. I mean, I felt like I didn't have enough fingers to scratch everything! My right wrist was on fire from the itch, and then it moved to my hand. After that, I noticed that my hand felt funny. My palm and thumb started swelling. My fingers got a little swollen, just enough to feel strange when I tried to bend them. This lasted until after I got home.

I guess it was good timing that the benadryl kicked in right after I got home. The swelling didn't progress anymore, and the sleepiness took over. By the time I woke up, my hand was mostly better and the itching was gone. I can only imagine how bad it would have gotten if I hadn't taken the benadryl.

Let's hope that tomorrow is better!

Round 2

It's all in my head... at least the proof is all in my head. After IV antibiotics, 2 different oral antibiotics, and some antimicrobial medications, I'm still not feeling any better. I'm worse, actually. Lightheaded more frequently, body aches, joint pain, numb toes, a blurry spot in my left eye, and the list goes on. The specialist finally ordered a brain SPECT scan, which showed several areas of decreased blood flow to my brain, one area of no blood flow, and one area of abnormal flow. All of this is indicative of inflammation from chronic lyme.

So, today I am going in for insertion of a new PICC and tomorrow I will start round 2 of IV medication. This time will be a combination of different medications which are supposed to better cross the blood-brain barrier. I'm hoping for some better results this time. All I can do is keep fighting.