Lyme Disease

Here I was, working on a post about how I have felt like my old self for a good, solid week. No fatigue, no arthritis pain, no swollen, red hands, no mental blanks. I was so excited. I had an off day and thought it was just an off day. Then, the next day, major fatigue and swollen, painful joints.

Then, I realized something. I was on antibiotics for a bronchial infection and they were in my system for a few days making me feel great. As they wore off, the dratted Lyme related symptoms returned.

Even more annoying is the fact that my brother-in-law can’t comprehend that his sister recovered with no lasting side effects and I still have problems. He’s decided that what I have is carpal tunnel syndrome from blogging and freelance writing. Well, I can see where he’s coming from. It makes sense that all this typing is affecting my knees and ankles, as well as my hands. Aggghh!!

How’s this for cheery news? Lyme Disease rates in Maryland were twice as high in 2007 as they were in 06. Before you flee the state, though, it seems like new funding for some counties and increased awareness are the major reasons for the increase and that many people have been suffering from Lyme all along.

Well, I think I’m doing much better lately. I don’t suddenly lose words like I was doing. Do you know how annoying it is to suddenly forget the word for fridge in the middle of a conversation when you’re trying to sound intelligent?

“I’m just going to run and stick my lunch in…uh…that white box thing that keeps food cold and I’ll be right back to help you set up, ok?”

“You know, I think I’ve got it covered. Are you sure you can handle working today? Maybe you need to go home and rest.”

“No, no, I’m fine. Just forgot the word for fridge for a second there.”

I still tire out really easily, but something reconnected in my brain and on top of losing words less often, I am no longer taking an hour to compose a single paragraph. Yahoo!

I’ve been thinking, though. If I knew I’d get Lyme disease, would I have avoided gardening and hiking and feeding feral cats? I don’t think so. I still do some of those things, although I am a little weird about it.

“Here, kitty, kitty. I’ll just stand three feet away so I don’t startle him, wait til his head is in the bowl and stretch over with the treatment tube… Ah, ha! You’re good for another month, buddy.”

It isn’t cheap treating every stray I still haven’t managed to trap and place in a new home, but it is worth avoiding having them drag ticks near the house.

And gardening – well, I like to do that when temps are well below freezing and hide indoors when it is nice. I’m certainly not doing much, either. Walking across the yard wears me out. Digging and transplanting -forget it.

Hiking is still really important to me, too, but I haven’t gotten the nerve or the stamina to venture back out there.

So, what about you? Would you have still done things that could result in a tick bite? Are you still doing that kind of stuff? I really want to know.

According to the Hartford Courant, the state of Connecticut is going to gather actual data on the number of positive lab results for Lyme and whether doctors use those results to diagnose Lyme disease. I think an organized effort like this is a great idea and I hope it helps health organizations realize that the tests they use aren’t always effective.

I was talking to someone yesterday who got Lyme disease 5 years ago. She says she was full of energy and never sick in 70 years. Then, she became a Lyme victim and got arthritis and a list of other ailments one after the other. She says she’s had many relapses over the past few years.

A woman standing nearby said she must have meant to say Lyme survivor. She responded immediately that she definitely meant victim because she hasn’t overcome the Lyme disease – it still is bothering her.

I don’t like the thought of being a victim, though. Maybe Lyme fighter?

I’m personally doing pretty well this week, although I still have no stamina to speak of!

Did you know that Rocky Mountain Spotted Fever is said to be worse than Lyme disease? I’m glad I don’t live in the Rockies! And the dog tick is a carrier, which means it probably spreads even worse than Lyme does. According to the Memphis Democrat:

Mention a tick bite and most people are worried about Lyme disease. But one Scotland County family found out there can be worse, after a canine friend was struck by a much rarer disease courtesy of one of the nasty little parasites.

Rocky-Mountain Spotted Fever is not unheard of, but most Missourians are far more familiar with the sister malady, Lyme Disease.

I still have pain in almost all my joints and have problems walking without hobbling around like I’m 300 years old, but now I am really having problems with joint stiffness from the Lyme disease, too. Last night, I was helping my niece with her math work. She’s learning to add and was really struggling, so I suggested that we make the two numbers and count on our fingers, which is something we take for granted, right? Well, I did the five with no problem – just held up one hand. Then I went to make a 3 with my other hand. I couldn’t. Both the last two fingers just won’t bend. I guess it is back to the doctor again.

Science Daily reports that a study by Columbia University Medical Center shows that using IV antibiotics helped chronic Lyme disease patients with cognitive impairment improve. Unfortunately, ending the antibiotics ended the improvement, but it is progress. The most important thing to me is that a major university with a very good reputation is studying Lyme disease and thinks that chronic Lyme disease exists.

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!