Lyme Disease

This new antibiotic seems to be working much better. I can add again, which is really a nice thing. I used to get 99% on my math report cards, but some strange Lyme disease side effect made me lose all ability to do math, including balancing checkbooks. I also can multi-task again, which is also very useful, especially when you are teaching.

Unfortunately, I still have swollen fingers and ankles and my joints still hurt, although some of them do not hurt quite as bad as they used to. I stopped taking pain killers because the Dr. thought they might be causing the swelling, but no change. Hopefully, I will continue to improve and the pain and swelling will go away.

I started really feeling tired and having a ton of joint pain again, so I went back to the Dr. to find out if I have some kind of permanent arthritis problem. She thinks I still have Lyme disease and decided to try another antibiotic for 90 days to see if there are better results. You’re supposed to notify your doctor if you have any of this list of side effects from the medication, one of which is bad joint pain. How to figure out that one is beyond me, unless my joints decide to start talking.

“Hello, out there. This is your hand. Just wanted to let you know that this particular pain is Lyme related.”

“Well, this is your knee and the pain you feel here is from the antibiotic. Call your Dr. right away!”

I’ve been having trouble finding an unbiased overview of Lyme disease in news articles. This article by Donna Nichols of Record.net is the kind of good reporting I was looking for. She actually presents both sides of the story. (The photography is ummm…not so good, as one of the readers pointed out rather crudely.)

How sad is this?

CENTRALIA, Mo. | A 15-year-old girl has died from a rare but treatable tick-borne disease, officials said Thursday.

When are we going to have a quick and accurate way to diagnose tick borne illnesses? Ehrlichiosis should not be fatal.

tick

Originally uploaded by John Carleton

You come back from a nature walk and you find a tick embedded in your skin. Ick. As you run for the vaseline, you hesitate. Didn’t you hear that wasn’t really the way to remove ticks? Maybe you should get a lighter instead and burn the little biter. No, wait…how do you remove ticks anyway?

Well, there really is only one way to remove a tick properly and it involves tweezers and pulling. Sorry, folks, I know it is gross, but if you don’t take it off properly, you risk infections and ticks hanging around on you for a few more days. Grasp the tick with the tweezers as close to the head as possible and pull it out. It is important to get the whole tick.

You may want to save the dead tick to show your doctor if you suspect Lyme disease. Make sure it is in a container it can’t get out of!

Or at least I feel like there is! The second I say I have Lyme, I am offered doctor referrals for someone who wasn’t getting better and saw a Lyme Literate Doctor -  always 2nd or 3rd hand, so I can’t get the whole scoop. I don’t know. Do they really know better than the CDC? I know I’ve read that many of the treatments given are actually dangerous or have been proven not to be effective and I’ve heard, even from referrers, that the doctors charge big bucks.

I have a lot of joint pain and some short term memory problems (usually at the same time I’m having the pain, so I think it is just that it hurts too much to remember stuff…) but I don’t think it is worth dying over with risky treatments.

Have you been to a doctor specializing in Lyme? Did it work for you or was it a bad decision?

Here I was feeling special and it turns out ticks are giving Lyme to everyone, including heads of state! According to news reports:

The recent revelation that President Bush was treated for Lyme disease put him among a growing number of Americans who have gotten the disease.

Battered butterflyOriginally uploaded by StampingMad

I went out to the garden today and saw this butterfly. Battered, missing a half a wing, but still beautiful and very determined to get nectar from every flower blossom it could. Anyway, just thought it was a very inspirational sight. I’ve got some pains, but this little guy is actually missing parts!

I was feeling pretty good – just mild pain - and went out for a bit yesterday. From the pain I’m in today, you’d think I was doing hard labor in a field for eight hours. Not hardly. I spent three hours sitting at a table doing a bit of rubberstamping and listening to technique discussions. Three hours mostly just sitting there and today I hurt about an 11 on a scale of 1-10. Six weeks of medication and my joints are still really affected by the Lyme disease. Any activity gives me a major pain relapse. Has anyone else had this stuff happen?

If you work full time and have a bad case of Lyme disease, you have a few options – sick leave, short term disability and long term disability. Of course, you’ll have to use up all of that sick leave you’ve saved up before moving on to the next step. However, you get at least part of your income if you choose any of these options. For people who work part time, the options aren’t as nice – quit your job or take unpaid leave under the family medical leave act.

What do you do to make ends meet now? Well, there aren’t really many options. I’m fortunate enough to be able to freelance when I can’t work out of the house, but I still had to turn down quite a few freelancing jobs when my brain wasn’t functioning at peak performance. If you are looking at a month or two of unpaid leave, try:

• Cleaning out your closets. Resale shops and eBay have saved more than one person from living in the dark during lean times.
• Taking on low stress odd jobs at home. Sometimes, you can’t get off the sofa long enough to work four to eight hours a day on your feet, but you can hem pants or edit a paper.
• Discussing work from home options with your boss. If you have a job that could actually be done at least part-time from home,  it is a win-win situation. You can rest part of the day and still be paid a partial salary and your boss isn’t buried in a pile of extra work.

If you have any hints on dealing with job issues while you have Lyme disease, I’d love to hear them.