Tag Archives: testing

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

 

Cutting-edge Test Sets a Trap for Lyme

Click here to download and play a cool Powerpoint animation of the nano trap at work: Nanotrap animation. Courtesy Dr. Lance Liotta, George Mason University.

Don’t be put off by the science lingo—click on the image to download and play a Powerpoint of the nanotrap at work. Cool, right?
Courtesy of Dr. Lance Liotta, George Mason University.

 

Several years ago after gardening in my suburban backyard, I found a deer tick attached to my hip. Then came a rash. And then I started hurting all over like I was getting the flu.

I wasn’t surprised when my nurse practitioner examined me, diagnosed Lyme, and prescribed antibiotics. I should have been lucky. I had the bite with the beast still attached, in the middle of the classic target rash. I felt like I was dying of flu-like aches and pains.

But as it turned out, I wasn’t lucky after all.  Continue reading

O Canada

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I’m always a little stunned when I track this blog and am reminded that people from all over the world visit. So many of us are on the lookout for information.

Today I’m thinking about Canadians because lots of my traffic at the moment is coming from my neighbors to the north, who’ve been checking out my post from several years ago on how Lyme was affecting my brain at the time.  Looks like some of you are sharing the link on Facebook. Thank you!

Like others around the globe, many Canadians are having a tough time getting good treatment. Health officials just don’t get it (sound familiar?).

The nonprofit Canadian Lyme Disease Foundation says:  Continue reading

Shocking Infographic: Lyme Disease Quick Facts

From Lyme doctor Daniel Cameron & Associates:

 

Video: Pathologist Alan MacDonald Addresses Important Lyme Questions

If you’re like me, you want to know the latest scoop on what scientists are learning about Lyme disease. In this May 2013 interview we hear again from pathologist Alan MacDonald. (This interview is part 2 of a 3-part series, see the first one here). I’ve noted some key points you can jump to if you don’t have time to view the entire interview.

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Babesiosis: Multiple Strains Complicate Diagnosis

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

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.

Continue reading