Caring Bridge, in partnership with the CDC.

I know several people with a CaringBridge Site. I even set one up, but I started to think, “who would visit?” All the people who ask us how we are? Well, they know. All the people that don’t want to know? I don’t think so. All the people that think, after 19 months that we should be “over it?” Three strikes. Out.

So, I don’t give out the address. But, tonight, I thought I’d take another peek at it, while I was checking the sites of 2 friends. Did you see the “RESOURCES” link?

Clicks you RIGHT to the CDC. No opting out. They have a “partnership”.

So, according to the CDC, Lyme Disease isn’t really a big deal.

Lyme Disease

I will credit them with this, though. They do say, “if left untreated, infection can spread to joints, the heart, and the nervous system.” They decided to ignore all the studies that show that Lyme LOVES brain tissue. But at least they mentioned that it can spread. Even if they didn’t add, “Like a fricken wild fire” or mention, “it can cross the placenta and has been found in semen and vaginal fluids”.

But I love this about Bartonella:

Bartonella

Yikes! No rough play with your cats or you might get Bartonella. Again, no mention of the sexual transmission or the congenital situation I’m living. Nope.

And my favorite:

Babesiosis

Did you know that most people don’t have symptoms and that there is effective treatment? Okay. Maybe if you KNOW you have been infected.

I will give them credit, though. They list this if you dig deeper into their site:

Babesiosis can be a severe, life-threatening disease, particularly in people who:

do not have a spleen or whose spleen does not function normally;
have a weak immune system for other reasons (such as cancer, lymphoma, or AIDS); or lyme. . duh.
have other serious health conditions (such as liver or kidney disease); or
are elderly.
Complications of babesiosis can include:

a low and unstable blood pressure;
severe hemolytic anemia (hemolysis);
a very low platelet count (thrombocytopenia);
disseminated intravascular coagulation (also known as “DIC” or consumptive coagulopathy), which can lead to blood clots and bleeding;
malfunction of vital organs (such as the kidneys, liver, lungs, and heart); or
death.

But, dig even deeper and find this:

The main way is through the bite of an infected tick—during outdoor activities in areas where babesiosis is found (see below).

A less common way of becoming infected is by getting a transfusion from a blood donor who has a silent Babesia infection. (No tests have been licensed yet for screening blood donations for Babesia.)

A few possible cases of congenital transmission—from an infected mother to her baby (during pregnancy or delivery)—have been reported.

SCORE! But seriously? If my Caringbridge visitors read the front page of the illnesses that we have they will all be scratching their heads thinking we just like attention.

Yeah. . I love the attention I get from the HUGE open sore on my neck, that won’t heal because my immune system doesn’t seem to be working. I love the looks I get at my dirty hair and my limp and the brace around my hips.

Not.

Besides, do I really want to know how many folks check in on my site? I think that might be depressing.

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2 responses to “Caring Bridge, in partnership with the CDC.

  1. Hi Interesting post.

    Did you see the presentation done by Sarah Chissell on congenital Lyme at last years ILADS conference it is available on their DVD.

    Sarah is an Obstetrician at a hospital in the UK, her son had Lyme not congenitaly but that was how Sarah got involved with ILADS. Son is now well off antibiotics and playing sport back at school although he had neurological symptoms and was in a wheelchair.

    Sarah did present at 2008 Lyme Disease Action conference in uk presentations is available at
    http://www.lymediseaseaction.org.uk/conf2008/chissell.pdf

    Good luck at beating your lyme

  2. lyme warrior with a caring bridge site

    I am sure that most Lyme fighters who have Caring Bridge sites, have created those sites because they were asked to do so by friends and/or family members. Since Caring Bridge is partnered with the CDC, I think it’s wonderful that the real truth about Lyme is being told all over the Caring Bridge site. The proof is in the pudding. When enough people see the pictures of Lyme and hear the stories, the CDC won’t have anyone left to listen to their bull****. We might as well use Caring Bridge to tell the truth! Keep fighting. I know you will.

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