10 Million Recent Reasons to be Hopeful about Lyme Disease

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I have been wondering lately if it’s just my imagination or if Lyme research and awareness are finally getting traction. Because funding has been pretty dismal historically. But we might just be getting there at last.

The latest good news is a big grant to Johns Hopkins researchers: $10 million from the Cohen Foundation will go to three Lyme research teams led by John Aucott, M.D.; Ying Zhang, M.D., Ph.D.; and Brian Schwartz, M.D. Every one of those ten million dollars will go for critical areas of study. (For a list of some fabulous organizations supporting funding to many research projects at many institutions, see the end of this post).

Alcott has been studying the debilitating symptoms of Lyme for a decade. Last year he became director of the new Johns Hopkins Lyme Disease Research Center, focused on what they call Post-Lyme Disease Syndrome. (Dr. Aucott sees patients upon referral from their primary physicians. Learn more here.) Whatever they confirm as the exact cause, that’s what I and many of my friends have got—so of course I’m keenly interested.

What are the symptoms? They can include extreme fatigue; musculoskeletal pain; arthritis-like pain in the joints; and cognitive, neurological, and cardiac symptoms.

With the new grant from the Cohen Foundation, Dr. Aucott plans to open a new research center each year for three years, adding Johns Hopkins Bayview Medical Center and a site in Howard County, Maryland, to the current Green Spring Station facility in Lutherville, Maryland. He foresees expanding on to other sites along the East Coast after that.

“As Lyme cases continue to increase in the U.S., there is an increasing need to understand the disease and its outcomes,” says Aucott. “We have no way of predicting who will recover and who won’t.

This grant will allow us to explore why post-treatment Lyme disease syndrome exists, the mechanisms behind the disease and the pathways through which it causes symptoms so that one day, we can use that information to develop ways to prevent the disease or develop more effective drugs. Currently, we don’t have a full understanding of the disease or the most effective ways to treat those it impacts.”

He and his colleague Joel Dudley, Ph.D., professor of medicine, will use their share of the grant for  detailed clinical, immunological, and molecular profiling.

Teaming up with them is Joel Dudley, Ph.D., assistant professor of genetics and genomic sciences and director of biomedical informatics at the Icahn School of Medicine at Mount Sinai in New York City.

What powerhouse credentials. And there’s more work coming out of this grant.

Dr. Zhang, professor of molecular microbiology and immunology at the Johns Hopkins Bloomberg School of Public Health, will continue his work to find the best drug combinations for successful Lyme treatment.

Dr. Schwartz, professor in the Department of Environmental Health and Engineering at the School of Public Health, will work with data from 500,000 Lyme patients in Pennsylvania. I’m not aware of anything like this project, which will explore many facets of how Lyme impacts patients, risk factors, and basic Lyme awareness.

I’m most interested in the patterns his team will be looking for with regard to treatment response. So far, no one treatment works the same for everyone. Why is that? What threads will they find to inform better treatment?

Now, all this adds up to a lot of brain power at Johns Hopkins working to get to the heart of the illness in ways both broad and deep. And many other dedicated researchers are doing and have done important work. But funding is still far too low for such a wide reaching public health crisis. I don’t know about you, but I meet people all the time who are  touched in some way by this illness.  The numbers astound me.

With more funders coming forward, perhaps we’ll finally reach the scale of research necessary to find a cure. The untold thousands upon thousands suffering from the tragedy of persistent Lyme disease deserve nothing less.

 

 

Check out these organizations to to learn more about research, funding, participation in studies, and more—including where you can donate Feel free to add more in the comments section.

the Global Lyme Alliance

Lyme Disease Association (LDA)

LymeDisease.org

Lyme Research Alliance

Bay Area Lyme Foundation

 

Video: Shocking Portrayal of Youth Lost to Lyme

 

 

When I discovered this on YouTube, I sobbed as a happy young boy’s health disintegrated before my eyes because of Lyme and co-infections—and no appropriate treatment.  I weep when I see it today.

Shame on the Canadian health system.

How many more victims of the Lyme controversy could make a video like this?

Jean-Luc, I can’t find you, but I pray you have found the right help as I have, and remission.

I think of you often. You are my hero. Your courage has sustained me many a day.

Highest Confirmed Lyme Cases: Boys Ages 5-9

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This graph is frightening: Our boys and girls are most at risk. I’m guessing that’s because they spend so much time exposed to ticks: playing outside, playing sports on grassy fields, and rolling around with beloved pets that may be carrying infected hitch-hikers.

Bear in mind these are the reported cases at the moment; many experts believe overall numbers are much higher due to under-reporting and testing that is 50% inaccurate. I bet there’s an update soon from the CDC’s current number of 300,000 reported cases year.

We need prevention, prevention, prevention—and we need solid diagnostic testing and treatment. What can we do? Raise awareness by writing local and federal government reps and newspapers. Take what we learn to our primary care docs. Advocate for research funding.

Kids should not be disabled, losing out on school, friends, family time, music lessons, sports, first dates, homecoming and more because of a preventable illness.

Beware Infection and Re-infection with Lyme

My friend Mickey gave me this magnifying glass cleverly disguised as a necklace. Note the thin tweezers for grasping the tick close to the skin, and the sesame seed next to the nymphal tick.               LifeLoveLyme

My friend Mickey gave me this magnifying glass cleverly disguised as a necklace. Note the thin tweezers for grasping the tick close to the skin, and the sesame seed next to the largish-sized nymphal tick.
LifeLoveLyme

 

 

Last week, I had just pulled out of my brother’s driveway in the gorgeous countryside on the outskirts of Middleburg, Virginia, when I felt an itch on my ankle. I looked down and saw a teensy tick clinging on by its mouthparts. Wrenching the steering wheel, I pulled over in a blind panic. Using my fingernails as tweezers, I grabbed it as close to the skin as I could and got it off.

Chanting “Be calm, be calm,” I got out of my car and scanned the parts of my body I could see. There on the back of one leg was a larger tick. I struggled with that one but got it off, too.

Making a U-turn like I was in a movie getaway scene, I tore up John’s driveway, jumped from the car and ran into his house. I shouted out what I’d found as I headed for the bathroom, stripping off my clothes as I went.   Continue reading

Time to Move Lyme Disease Awareness Month to April?

What's happening to the tick life cycle?

What’s happening to the tick life cycle?

 

The month of May brings many things, among them Mother’s Day, tulips, and Lyme Disease Awareness campaigns. But according to Dr. Richard S. Ostfeld, a disease ecologist at Cary, if we want to get a leg up on tick-borne illness we need to become vigilant earlier in the season.

Source/Learn why here: Time to Move Lyme Disease Awareness Month to April?

Take a bite out of Lyme! 

May is Lyme Awareness month- we challenge you to help spread life-saving facts!
Learn more at www.lymediseasechallenge

Mother’s Day: The Bitter and the Sweet

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LifeLoveLyme

I’m headed to my son’s college graduation at Clemson in South Carolina. His birthday falls on Mother’s Day, just as it did when he was born 22 years ago.

What a great reason to miss Mother’s Day brunch back then. What a treat to be looking forward to sharing it now.

Even though I’m still struggling with the disabling illness that felled me when he was in high school, I’m better. And so grateful to be able to enjoy this big triple-header.

But it’s bittersweet.

Here’s the bitter: Everything I have missed in the lives of both my kids. No making wonderful mom/kid memories that would have stayed with us for a lifetime.

Continue reading