Tag Archives: lyme disease

Babesiosis: Multiple Strains Complicate Diagnosis

Co-infections, Lyme Basics, Testing February 25, 2013 Leave a comment

When I finally arrived at the door of a Lyme Literate Doctor (LLMD), I was surprised to learn that in addition to Lyme, I have an infection of the red blood cells called Babesiosis, caused by a tiny parasite.

Symptoms can include fatigue, drenching sweats, muscle aches,  and nausea; the infection often begins with a high fever. It can also attack the spleen.  I got mine from a tick bite. People also become infected through blood transfusions. 

The thing is, if you are treated for Lyme but you also have this co-infection going undetected and untreated, your health won’t improve, as seen in a recent television program about a young girl in Maryland who wasn’t improving when treated for Lyme alone. 

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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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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. 

 

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.

Guest Post: Top Ten Tips to Prevent Chronic Lyme Disease

Co-infections, Lyme Basics, Prevention Tips January 26, 2013 1 Comment

logoteEveryone, everywhere should read these tips from experts at the International Lyme and Associated Diseases Society (ILADS), reproduced here from the ILADS website with permission.  

Chronic Lyme disease patients may face a long hard fight to wellness. People with chronic Lyme can have many debilitating symptoms, including severe fatigue, anxiety, headaches, and joint pain. Without proper treatment, chronic Lyme patients have a poorer quality of life than patients with diabetes or a heart condition.

The fact is Lyme is a complex disease that can be highly difficult to diagnose. Reliable diagnostic tests are not yet available which leaves many—patients and physicians alike—relying on the so called “telltale signs” of Lyme disease: discovery of a tick on the skin, a bull’s eye rash, and possibly joint pain. However, ILADS research indicates that only 50%-60% of patients recall a tick bite; the rash is reported in only 35% to 60% of patients; and joint swelling typically occurs in only 20% to 30% of patients. Given the prevalent use of over the counter anti-inflammatory medications such as Ibuprofen, joint inflammation is often masked.

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Video: Musician Daryl Hall Tells His Lyme Disease Story

Co-infections, Lyme Basics, Recovery: The Picture of Health, Video January 24, 2013 1 Comment

Seems like years since I’ve heard a Hall and Oates song, but this interview on YouTube sure caught my eye. I’m so glad famous people like Daryl are sharing their personal lyme stories.

Notice how his symptoms gradually built up until the day he crashed and couldn’t ignore them any more. If more people knew about how often lyme—”the great imitator”— is mistaken for other things, they could get on the path to good health sooner.

Also take note: he’s recovering – you will, too.

Memory Tip: Pencil It In

Mental Health, Staying Positive January 23, 2013 Leave a comment
It was definitely a bummer seeing all the things crossed out on my kitchen calendar.

It was definitely a bummer seeing all the things crossed out on my kitchen calendar.

I heard an excellent idea from a former Lyme patient who now makes her living helping others manage all the ins-and-outs of this disease. She suggests ditching pens for pencils when it comes to writing down calendar entries.

Because back when she was ill, she started noting social events and appointments in pencil. That way, she says, if she had to cancel something, she could erase it and move on. She didn’t have the stress of seeing her calendar filled with all the thing she crossed off because of Lyme.

That’s an idea we can all use as we move into 2013. In the past few days alone, I have had to miss the funeral of a friend’s mother, pass on my wonderful brother-in-law’s major birthday celebration four hours away in New Jersey, and cancel a reunion lunch with a dear family friend.

At least when I look at my kitchen calendar now, I’m not reminded of all that, and can look to the next week with a fresh outlook.

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5 Ways to Help Others “See” Lyme

Lyme Basics, Mental Health, Tips for Family and Friends January 21, 2013 Comments: 14
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Actually, I’ve learned many people need a little help from me to truly see the pain.

Lyme is known as an “invisible” disease. That’s because oftentimes we look pretty good on the outside despite feeling myriad symptoms inside. And—unfortunately—many of us are darned good at keeping those symptoms invisible.

My own reasons include:

  • I don’t want those around me to worry.
  • Pride.
  • I don’t want people to know how sick I really am because I’m afraid they’ll abandon me.
  • I hate the thought of becoming that depressing person who is constantly complaining about how crummy he or she feels.

But I’ve come to see that a dose of reality is a good thing. When people understand the seriousness of this illness, they offer empathy and support.

Beyond that, we need others to know how serious chronic Lyme can become, so more people understand diagnosis and prevention—and stay well.

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