Video: Babesiosis, From a Tick to Your Blood Cells

Co-infections, Lyme Basics, Video February 23, 2013 Leave a comment

This video on YouTube gets up close and personal, a fascinating view of how ticks transmit the coinfection babesiosis.

Check out the tiny size of young ticks, or nymphs. Wow. No wonder infected people often never see them.

Then learn what happens once the parasite gets inside the human body. Symptoms can include drenching sweats, fatigue, and muscle aches. Click here to read a story from the New York Times about the potential impact of babesia on the spleen.

Noted on YouTube:

Special thanks to Rick Smith at The University of Rhode Island for narration; Rick’s brother was recently diagnosed with Lyme disease. To learn more about Tick Bite prevention, please visit http://www.TickEncounter.org

It Takes a Village – And the Lyme Village Rocks!

Staying Positive, Testing February 21, 2013 Leave a comment
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Major news day for lyme disease!

As many of us know, Lyme disease identified and treated early means a quick road to health.

Left to invade the body deeply over time, Lyme and other tick-borne infections can be disabling—and even fatal. Treatment in those cases can be a long, expensive, and rocky road.

I should have been on the shortest path. I was treated based on a tick embedded in my hip, a rash, flu-like symptoms, and severe pain all over my body.

But when my test came back negative, my practitioner stopped the month of antibiotics that would have saved me from a nightmare that has been going on for three years now.

On Tuesday, members on the House side of Virginia’s General Assembly voted on a bill requiring doctors to tell patients that Lyme testing is inaccurate. So when I had the chance to join fellow Lyme advocates in Richmond the day before and help inform delegates, I grabbed my cane and pain medication and climbed carefully into a friend’s van.

I wouldn’t have missed that day for anything.

Continue reading →

Video: Landmark Lyme Testing Law in Virginia

Testing, Video February 20, 2013 1 Comment

March 4, 2013, was a great day for getting the word out about testing for Lyme, the sixth-fastest-growing infectious disease in the country: Virginia became the first state in the nation requiring doctors to tell patients that their Lyme test results may not be accurate.

With the signature of Governor Robert F. McDonnell, who convened a task force on Lyme in 2011, Virginians will gain a better chance of early diagnosis and treatment.

That’s great news for Virginians, and great news for others across the globe seeking similar legislation.

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Love Notes

Staying Positive February 14, 2013 1 Comment
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Photo by LifeLoveLyme

 

Apparently there are people who actually hate Valentine’s Day. Too commercial, they say. I’ve never experienced it that way.

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Snow Day

Mental Health, Staying Positive February 13, 2013 1 Comment
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Photo: LifeLoveLyme

While I was visiting  family in northern New Jersey a few days ago, a snow storm blasted across the Northeast. Nemo left eight inches of fluffy stuff covering everything in sight.

And overnight, my sister’s household slowed down to my speed. Lyme speed.

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Video: Controversy Over Lyme in Australia

Co-infections, Lyme and the Brain, Lyme Basics, Video February 1, 2013 Leave a comment

It’s not just places in the U.S. where people are told, “No lyme here.”

In this video posted on YouTube from Australia’s “Today Tonight” (aired 13 February 2012), a government health official says people with lyme in Australia most likely got infected elsewhere.

Patients interviewed say otherwise.

Note: For those not familiar with lyme at its worst, I must warn you that the interviews are graphic examples of the suffering inflicted by persistent lyme disease.

See another “Today Tonight” lyme report about a 3-year-old infected with lyme here.

And here’s research on coinfections in Australia. 

For more information on lyme down under, visit the Lyme Disease Association of Australia. 

 

What Lyme Teaches

Mental Health, Staying Positive January 31, 2013 Leave a comment
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Photo: LifeLoveLyme

Recently, I logged on and saw a posting on my Yahoo lyme support group from Rebecca of Hampton, Virginia. She had written a list that touched us all, and I’d like to share her thoughts with you.

I am learning…

To chill out.

To love myself not just on good days, but bad days, too.

To reach out to others.

To let go of my need to control.

That friends are treasures.

That hugs, kisses, and a little together time in a family go a long way.

***

That it’s OK to not be OK sometimes.

That I’m never alone.

That every moment of every day is a gift.

That none of us deserve this and we matter in a very special way.

That this disease is ugly—but I’m not.

Continue reading →

Video: Proposed Lyme Bill in Virginia Would Inform Patients that Lyme Tests are Inaccurate

Lyme Basics, Testing January 30, 2013 1 Comment

Did you hear whoops of excitement from Virginia this week?

A history-making bill (SB971) that would require doctors to inform patients of the inaccuracy of Lyme testing is under consideration right now in my great state. I would have traveled to Richmond to support the bill in person, if I weren’t so ill with lyme myself.

Above is a video from YouTube of the January 29 debate in the state Senate earlier this week. If you are aren’t a hearing junkie, scan for the opposition’s argument, and fast-forward to these sections for compelling highlights:

[15:15] Senator Richard H. Black, who introduced this bill.  When asked if consideration has been made as to how the bill could intrude on patient/physician relationships (many doctors oppose the bill), Senator Black replies respectfully, “I have tremendous faith in our physicians and I believe in their ability to do their jobs. I feel like in this particular area [Lyme disease] that this is a measure that would be of assistance and I think that it is something we owe to the people in the vast areas of  Virginia that are afflicted by this.”

The Senator then cites incidence charts [21:15] and says that while his district is ground zero for Lyme in Virginia, other areas also have a very high incidence.

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Key Lime Pie Days

Mental Health, Staying Positive January 28, 2013 Leave a comment
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Photo: LifeLoveLyme

Someone special took me on a drive along the Chesapeake Bay in southern Maryland the other day, and we discovered a cozy place serving up key lime pie made from the tried-and-true recipe of the previous owner. The minute I saw the sign advertising pie in front of the old house-turned-coffee house, I knew I had to have some.

Sitting in the warm, inviting front room and savoring every bite of tart, creamy deliciousness and crumbly graham cracker crust was the perfect celebration of my first day without Lyme symptoms in five months.

 

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Video: “Under Our Skin”

Lyme Basics, Prevention Tips, Video January 27, 2013 Comments: 2

If you haven’t seen the compelling and award-winning lyme documentary “Under our Skin” by Open Eye Pictures, check out the trailer above from YouTube.  It doesn’t seem to be streaming for free any more but see below for info on how to buy it or arrange a screening in your area.

Through interviews with people living the nightmare of chronic lyme as well as the doctors and researchers deeply committed to helping them recover, you’ll learn about this hidden epidemic.

It’s all here, from the shameful treatment of many patients by some in the medical establishment who deny the very existence of persistent lyme to the inaccuracies of testing and the impacts of this insidious illness on individuals and families.

You’ll also hear success stories from people who found health again thanks to lyme literate doctors. If enough people see this film, maybe we can attain the long overdue public awareness and action this health crisis deserves.

To buy the DVD, find out about screenings in your community, or to sign up to host a screening, visit www.underourskin.com.

UPDATE: The sequel, an Academy Award runner up, is now available! PLEASE SHARE ON SOCIAL MEDIA AND EMAIL. We need this information to reach beyond those already impacted.