Fewer blood drives planned because testing for tick-borne disease too expensive

So many people don't even know that they have it! ... and they are donating. I told my other son Kevin to stop donating. He got bitten in 2010 when Andrew did and is symptom free, but you never know! It's a shame, because there are so many shortages, but it's not worth the risk!

A lady doing my ultrasound recently told me that exact thing. She needed a transfusion at the birth of her second child.... and guess what? Yeah, she got lyme.... :(

Happyjo, as far as I have been able to tell, there are only a very small handful of people that are even willing to acknowledge this. I've been hollerin' about it for a couple of years now, but I keep getting poo-pooed that it's not that big of a risk - HELLO!!! This is a blood borne pathogen!!

So I have given up getting those in the higher up positions even within the Lyme community to listen to some things like this. It's really ridiculous to be honest that even those within the Lyme community - the ones that are supposed to be knowledgeable and "leading the charge" don't want to acknowledge many of the issues that are very real and very dangerous.

But as I have said, I'm just a lowly peon in their eyes.

My license is due for renewal and one of the things that you chose is if you want to be an organ donor. I reminded myself that I need to change that. Wouldn't want to give someone this terrible disease when trying to help them in other ways.

I was in an airport recently and got into a discussion with a woman who had also been diagnosed with Fibromyalgia. I did my talk about Lyme and heallingwell.com (this was after I got a positive test back). She happened to work for the military in some capacity where she was responsible for running tests on donations (I think it was organs rather than blood) and she said Lyme was one of the things they test for.

I was reading something about a couple of months ago regarding a high instance of Malaria in Maryland. I read through and I think it was a discussion about it being Babesia because under "a microscope they are indistinguishable". I relayed the story to my Rheumatologist while I was explained the Lyme test results and in his very dry tone he said "Malaria, hum, we haven't had a breakout of that in 30 or 40 years."

For me it's significant because 9 1/2 months ago, he put me on Plaquenil for new excruciating pain in my joints (never had it before in the 35 yrs of symptoms). He told me it would take 3 months for any benefit. He also called it a drug of last resort, but I understand why now.

He told me that I would need the special eye imaging and made sure I set the appointment up. It was my eye doctor that mentioned Lyme and the rest as they say is history.

Almost immediately my drenching sweats and the pain on the bottoms of my feet went completely away. The joint pain also eventually went away (mostly).

He called it a drug of last resort because it is toxic, but its the better choice of only two drugs of its kind. It can cause a major eye problems so you need a baseline test. about two months ago, a new article came out changing the frequency you need to repeat the test. When properly dosed, it takes at least 5 years to get to a level in the body to even show a pinprick. So if you get the test redone, it will be caught before there is any lasting damage.

It's billed under medical insurance by the way not optical. So if you are on plaquenil and haven't had the baseline get it done. It is important.

Kim

I just scanned the article, what's mind boggling is that it specifically states "New England and the Midwest." Yes, lets close the barn door after the horse has left.

Amazing, given what I said earlier that there was a rise in diagnosed Malaria cases in Maryland. Oh and I forgot to mention, they completely ruled out it being due to foreign travel.

What's even worse is I just started reading Buhner's book, Healing Lyme and read about Lyme being found in other biting insects especially mosquitos. It also said that it has even been found in mosquitos eggs after over wintering.

It reminds me of something said by one of the GOP presidential candidates about the EPA regulations. He said "I think it should be a state decision."

My thought at the time was, yeah, the air pollution just stops at the state border. Oh and the watersheds too. Tell that to everyone who lives east of the Tennessee Valley Authority or downstream from a Duke coal plant. As if Duke saying, well we hid the fact that we were dumping coal waste into the waterways from you at 23 places, but since everyone knows now so its ok.

Traveler, I like the three exclamation marks. I just wish exclamation marks would have some effect. It's really not fair that only some of us have to not only take care of the planet but make sure there is someone to pass it onto!

The thing is that if humans went extinct, the rest of the life on the planet would thrive.

Boy am I feeling maudlin today. Hope others are having a better day.
Kim

There were a heck of a lot of people that had to make a ruckus about AIDS before anything was done. I think there is going to have to be a ruckus.

I don't get the impression that writing to the IDSA would do any good at all.

But, I love writing to politicians. I generally get a phone call from the secret service trying to find out if I am a kook. I actually wrote a letter to my state governor's wife, telling her that I knew her husband was busy, but maybe she could take the time to look into..... " I was examined and interviewed and by golly I got what I wanted!!

So, my first step is going to be writing letters. I hate politics. But they are suppose to represent us. I just write and remind them.

I can't just have lyme. There is a purpose. I don't know what it is, but while I am able and newly infected and still ambulatory, this is getting heard about from me.

My second letter is a letter to the editor of my poo-dunk newspaper. I want mommies and daddys to check their babies. We have lyme in our area and they need to know!

You can still donate your organs for scientific research, brains are needed.