Bloody Lymey

A Blog About Living with Lyme Disease

Yale University. Mehhhhhhhh.

on July 1, 2012

I found this post in the Yale Alumni Magazine:

(http://www.yalealumnimagazine.com/blog/?p=15060)

“It’s post-Lyme, not chronic Lyme, new study suggests
“Posted by Carole Bass ’83, ’97MSL on June 25, 2012, 3:59 pm
“In the chronic battles over the existence of chronic Lyme disease, Yale experts have spoken loudly for the medical establishment. There is no such thing as chronic Lyme, they say.

“For example: ‘The Infectious Diseases Society of America has taken a strong stand against the belief that people are chronically infected with the Lyme disease bacterium,’ Yale epidemiologist Durland Fish said in a recent interview. ‘Unfortunately, a large number of patients have been misled by self-appointed lay experts. … The result is that a large number of people are being treated needlessly for an infection they do not have.’

“Now comes a Yale study that puts a different spin on the debate. It does not find evidence for chronic Lyme, but suggests that symptoms that linger after antibiotic treatment may be a post-Lyme condition caused by detritus from the dead germs.

“Lyme disease—named for the area of eastern Connecticut where it was first discovered—is an infection caused by bacteria called spirochetes and transmitted to human beings by tiny, scarcely detectable deer ticks.

“’Although the disease is responsive to antibiotics, up to 25 percent of patients treated early in the course of infection can experience protracted musculoskeletal symptoms of unclear etiology,’ write the authors this week in the online Journal of Clinical Investigation.

“In other words, patients still hurt, and the doctors don’t know why.

“Led by Linda Bockenstedt, researchers at the Yale School of Medicine examined Lyme-infected mice after treating them with antibiotics. They found that the bacteria—and therefore, the infection—were gone. But proteins from the bacteria persisted in the mice’s joints and near their cartilage. And the animals’ immune systems produced antigens to attack the dead stuff, causing inflammation and potentially arthritis.

“’This study provides the first direct evidence that spirochete proteins can remain long after the bacterium is gone, and in places where people can experience symptoms after treatment for Lyme disease,’ Bockenstedt says in a Yale press release.

“Full disclosure: I’m currently being treated for Lyme disease after lab tests confirmed a recent infection. I plan on a full recovery.”

I love this rebuttal in the comments area:

“Christine Lydon, MD says:
June 27, 2012 at 9:59 pm
Dear Ms. Bockenstedt,

Thank you for affirming that chronic Lyme disease does not exist and insisting that Lyme infection is self-limited and cured by two to four weeks of oral antibiotics; this is of enormous comfort to the 85% of us who never fully recover, and the 40% of us eventually commit suicide.

Thank you for collaborating with insurance companies to create guidelines that preclude coverage of our medication and force doctors to risk their licenses for having the audacity to treat us past the four-week mark.

I just have one question for you: Since this disease is all in my head, why is it that I am prohibited from donating blood? Certainly there is no risk that one could “catch” an illness that, by your own assertion, doesn’t exist. And aside from the crippling symptoms of chronic Lyme disease that manifest solely as a result of my overactive imagination, I am a veritable picture of good health.

To illustrate my gratitude, I ask that you please allow me to donate my blood to a special blood bank for you and your family. I have a very rare blood type– it could prove invaluable the next time one of your children’s survival depends on this gift of life. Thanks to your guidelines, it turns out that I am not actually sick. There are no words to express how much it would mean to me if I could return that favor.

Yours Very Truly,
Christine Lydon, MD (Yale School of Medicine, Class of 1994; currently bedridden and unemployed)”

As for me?  I’m wondering why the F**K the medical community is stuck on semantics and proving that there is or isn’t Chronic Lyme and why aren’t they taking this energy and putting it toward fixing whatever they suppose the freaking problem is? !

People have had the audacity to tell me I’m just “used” to being sick.  Well?  How do you explain my 10-month remission? How do you explain the millions of people with this issue???  There’s the power of positive thinking and most every day I have moved forward in optimism — that’s not something that someone who is “used” to being sick does.  I’m outraged.

Anyone want to start a letter-writing campaign?  At the time I had read this article, it had been published not quite 3 days prior and the comments are already closed (you ought to read some of them!).  I find that to be terribly interesting.

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4 responses to “Yale University. Mehhhhhhhh.

  1. Thanks for posting this! I’ve been reading and dissecting the Bockenstedt article from the Journal of Clinical Investigation for the past few days, and I think it’s going to be a big topic of discussion in my patient support group tomorrow night. Some interesting discoveries in the article–particularly, the imaging technique they use is pretty cool–but also a lot of problems with research method. I’ll be analyzing it in detail in a post later this week 🙂

  2. […] Yale alum and journalist Carole Bass would have you believe (Thanks to Becki from Bloody Lymey for opening my eyes to that one.), this study neither proves nor disproves the existence of Chronic Lyme disease, so […]

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