Lyme Link

I can’t believe I am back to all of the constant joint pain. I’m not taking any pain medications that cause water retention and I’m all puffy handed again, too. Other symptoms, such as dizziness, nausea and whatnot are back, too. The worst part is that I’m still on antibiotics. What a mess!

No matter what the CDC says, Lyme disease doesn’t always just up and vanish after a 30 day dose of antibiotics and I am living (although slightly whiney!) proof.

By the way, I was talking to someone today who was in pain from Lyme disease for quite some time and could barely function. He thinks that Lyme disease may actually leave behind a condition like fibromylagia. His doctor treated the symptoms he had like they were being caused by fibromylagia and gave him a medication for nerve pain and I must say, he looks like he feels 99% better than the last time I saw him. It was really interesting hearing him talk about this right after I read the news article on chronic Lyme disease not existing. Perhaps calling it post Lyme disease syndrome is the correct thing to do.

There is an uproar in the Lyme disease patient community over a new report by a group of scientists and doctors that says chronic Lyme disease does not exist:

A prestigious group of physicians and scientists says there is no evidence that chronic Lyme disease exists, and that patients may be doing themselves more harm than good by undergoing prolonged antibiotic therapy.

They prefer to call the problems of people with long term symptoms post Lyme disease syndrome and compare it to fibromylagia. Frankly, I don’t care what they call it. I want them to come up with a way to fix it!

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 butterfly

Originally 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!