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Friday, May 22, 2009

A Cautionary Tick Tale...and what to do....



Yesterday morning (so glorious!) Rani the pup and I set out for our walk of the territory. The air smelled sweet with blooms and all was right with the world as we headed up and along the ridge. This route saves me from some of the more serious hills and my right knee was giving me a little trouble. Just before 4th. St., a little piece of cartilage or something floated into just the wrong place and I needed to sit for a minute. Right where I stopped was a giant maple at the roadside, with a very convenient little ledge of sorts, close to the bottom of the trunk. I swept some bark and leaf bits with my hand and sat down to rest. Just a few seconds later I looked down to see a wee tick nymph, the size of a poppy seed, crawling across the back of my hand.

I flicked it off and immediately stood and brushed myself from the head down, especially the seat of my pants. Next was a quick check of the forearms and legs, under pants and shirt, before tucking everything back in and continuing on with our walk. My knee slowed us up a bit but we had our full walk and Rani was ready (after her tick check) for her nap.

The next step in self-care was to take all of the clothes I had been wearing and put them in the dryer for an hour. The heat of the dryer kills them...hot washing does not. After the dryer, they went in the next wash load. That underway, I showered, then asked my daughter to help me do a thorough tick-search. All was well. There was no reason to panic because I knew the steps. Now, so do you.

To take this one step further...had we found an embedded tick, I would carefully remove it and save it. We know that the tests for ticks are much better than the tests for humans. Then, you better believe, I'd be heading to my doctor's office and demanding a six-week course (no less, no less, no less!) of antibiotics as prophylactic treatment. That's all and you're safe...good to go.

If we'd known this, nearly eleven years ago, my daughter would be out in the world working, instead of being chronically ill and on disability. With our advocacy work we've met hundreds of Washingtonians with chronic Lyme now, many of them struggling and forced to turn to the State for help to get by. With just a little bit of education, we could save a LOT of people, not to mention MEGA MONEY, in Washington.

There's just one more step to take...and I ask my neighbours to take it with me. Please call our State Reps and ask them to sign-on to Federal Bill HR1179 for Lyme education and research, which is now in the House. Knowledge is power. Don't hide from the beautiful nature we are blessed with here just please, go into it with educated respect.

11 comments:

Stephanie Frieze said...

I've contacted them, Lorraine. Thanks for the great and timely cautionary tale. I've forwarded the link to my children and relatives.

MaryX said...

Thanks for your post. I was undiagnosed with Lyme for 9 years. I had gotten it I think at a bonfire with my friends in highschool. I didn't even know I was bit by a tick. I thought my rash was an allergic reaction. Then my life spiraled into crazyland. I'm glad that I'm being properly treated now in WA state. No one should have to suffer because of ignorance. The solutions are available. We just need the docs and the public to know about them!

Kim Thompson said...

We're on board Lorraine. Your personal tale is so critical.

MaryX, I am so glad that you are getting what you need for your health.

Lorraine Hart said...

Thanks so much for making the calls, my friends!

Mary, thank you especially for sharing some of your story with us. I wish the public could hear the hundreds of stories from the folks who have Lyme in Washington...so you could SEE the numbers of lives affected.

Again...please call your reps and ask them to sponsor Federal Bill HR1179 the Lyme education and research bill now in the House.

Please...lately the estimate has risen from ten cases for every one reported, to twelve cases for every one reported. If the national reported amount is 20,000....well, you do the math.

Once again, the Pacific Northwest has the highest national numbers of MS...and many of these cases are actually Lyme. The neurologist at UWMC told my daughter she "...could say she had MS..."

We never went looking for a cause to fight...but when someone you love gets this sick...and you find out that there IS help and hope...well...YOU FIGHT WITH EVERYTHING YOU'VE GOT. 'Nuff said.

Molly said...

Hi Lorraine. I'm a Lyme patient in Seattle (over from the WALDUC grp), though I didn't pick it up here.

I know this disease is controversial, and I honestly understand where people are coming from in doubting us, because I've had doubts about my condition myself. And yet, my freakish, stubborn physical problems continued to worsen, and involve more and more of my bodily systems, until I started on long-term antibiotics. My symptoms have very slowly begun to subside.

Believe me, if this were psychological, I would've been cured a long time ago, because I had more faith in other treatments than this one. Believe me, if this were the placebo effect, it would've ended a long time ago, because I've experienced it with other treatments and it only lasted a few days; this is a gradual recovery, months long so far and still with much to go.

Fortunately for me, I've been able to afford treatment without tremendous support from my health insurance, not to mention the cost of the many doctors and treatments on the years-long path of trying to figure out why my still-young body was rebelling against me.

I have a valid disease, one that causes me and my family tremendous grief, but I'm marginalized by the medical establishment. And I'm one of the lucky ones, because I haven't accepted a diagnosis of irreparable MS or IBS or chronic pain.

We may not know everything about Lyme, and we may even be wrong about some things--but duh, folks, that's why we need to pay for research!

Molly said...

Oh, and one more thing: You can skip over this entry because you don't have this disease and think it won't affect you, and I'll totally understand that impulse: There are a lot of lousy things in the world, and if you gave real thought to all of them you'd never leave the house out of fear and depression.

Just know that this isn't genetic or rare or isolated to certain regions. It's carried by a common, teeny tiny bug that's all over the US, and anyone--anyone--can get it. You might not know when it happens, and as most patients have experienced, doctors probably won't pick it up, even years later when you're very ill. That's why this is worth your attention.

Kim Thompson said...

Molly: well said. Keeping talking. Others will listen, I know.

Lorraine Hart said...

Molly, thank you so much for sharing some of your difficult journey with us, here in the neighbourhood. Here's to continued progress with your treatment. It's such a good education for the public to hear the very real stories behind the rising statistics. I hope you are having a gentle day.

Again...please call your local Reps and ask them to sign-on to co-sponsor HR1179, the Federal Lyme Research and Education Bill.

Molly said...

Thanks, Lorraine. I hadn't realized I had so much to say!

pittpan2005 said...

Thanks for a great article. I live in Washington State and have chronic Lyme disease. Both of my parents, brother and sister do as well. Please call your Reps and ask them to Co-Sponsor HR-1179. We desperately need the $100 million for research. Keep on fighting guys and make those calls. Don't wait for others to open the door, force it open yourself.

Lorraine Hart said...

I really appreciate your testimony, pittpan2005, thank you so much for adding your voice.