Educate & legislate: Sen. Charles Schumer on Lyme disease

Senator Charles Schumer in August, talking to the press about Lyme disease. His message is that we need to educate and legislate, and teach each other how to identify the symptoms early, before a treatable condition becomes a horrendous nightmare: chronic Lyme disease.

Schumer states that he is personally aware of the dangers of not treating Lyme disease immediately after contracting an infection. He says he was bit by a tick in the Hudson Valley, while inspecting a dam in the area. He sought medical treatment immediately, and says he was cured because it was caught early enough.

Senator Schumer’s comments, quoted from the Hudson Valley Insider, Aug 13, 2011:

“We need to bring Lyme disease and Babesiosis out of the weeds and better educate the public about how to keep themselves and their families’ safe,” said Schumer. “Lyme disease is a problem we’ve seen for decades, and Babesiosis is a recently growing issue in New York, but we haven’t done nearly enough at the federal level to tackle it. Tick-borne illnesses often go unnoticed for months, yet can be devastating for many victims and their families. The summertime brings about warm weather and school vacation, causing higher rates of infection in Ulster County and beyond.  The tick is a little pest that can pose a big problem, and this legislation would boost research of Lyme disease and Babesiosis and increase education and awareness in the community to better fight these diseases.”

Just for the record, Senator Schumer states that “20,000 Americans are infected with Lyme,” which is a misleading statement, and probably also a grossly underestimated number. Lyme experts estimate the number of infections to be approximately 10 times higher, more like 200,000 annual cases. Mangled facts aside, it’s always good to hear and see  an influential politician speaking out for Lyme awareness.

Educate and legislate!




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Link between Chronic Lyme and CFIDS

Even well into my so-called ‘normal’ post-Lyme life, there are days, such as this, when regular routine tasks -- preparing and cleaning up after a meal, writing an email, grocery shopping, seem unbearably exhausting. Friends I confide in say they have the same feelings and that it comes and goes. We attribute this to a variety of causes, hormones, diet, children, our jobs and just plain ol’ getting older. Illness is also suspect, especially for those of us who have battled with fatigue due to Chronic Lyme (aka neurologic post-Lyme), and/or the syndrome we call Chronic fatigue.

More studies are needed to examine the relationship between these two potentially devastating diseases. A dear friend and neighbor of mine, an aging Southern writer appeared astonishingly frail and weak, but whose wicked sense of humor never rested, died last year after struggling for many years with CFIDS. In spite of her failing health it always seemed that her role in our friendship was to make me laugh. She succeeded. Mine was to give her news about the steps being taken to find a cure to what ailed us. If I could get her updated address, I’d email this article to her this morning:

Possible links between Chronic Lyme and Chronic Fatigue Syndrome, are under scrutiny of experts including Steven E Schutzer, MD, and Brian Fallon, MD, the Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University.  

Scientists have discovered proteins in spinal fluid that can distinguish people with two mysterious illnesses that mimic each other — chronic fatigue syndrome and a kind of chronic Lyme disease.

Wednesday's study is small and needs verification. But specialists called it a promising start at clearing some of the confusion surrounding two illnesses with similar symptoms and no good means of diagnosis.

"It's a very important first step," said Dr. Suzanne Vernon of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America.

Lyme disease usually is cured with antibiotics, but some patients report pain, fatigue and memory or other neurologic problems that linger for months or years after treatment ends. This post-treatment Lyme disease shares symptoms that characterize chronic fatigue syndrome.

The new study analyzed spinal fluid from 25 of those chronic Lyme patients, 43 people diagnosed with chronic fatigue syndrome and 11 healthy people. Using a special high-powered technology, researchers detected more than 2,500 proteins in each group.

Read the abstract of the study here.

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New Lyme test for neuro symptoms

Like you, I've devoted a lot of my time and energy to figuring out how on earth to get better. "Be well" is my mantra, and I'm sure I'm not alone here. So when someone points me in the direction of research that's being done in the name of Lyme testing, I'm all ears. Here is something you might be interested in hearing more about as well: a new test for Lyme disease.

As we know, many people sick with a Lyme infection are routinely dismissed by medical doctors who aren't trained in diagnosing or treating Lyme as "crazy," or at best, "exaggerating." This type of reductive response from medical professionals can really sting. Nothing like being kicked while you're down, and from the very people you have turned to for help. I know how it hurts, and I've experienced firsthand the fearsome mental disorientation that this disease can cause.

I remember hearing my (deceased) father clearly saying my name. I jerked my head in the direction of his voice, fully expecting to see him standing next to me.  I remember hearing the phone ringing, ringing, ringing, and each time I picked up, a little girl on the other end pleading to talk with someone whose name I did not know, someone who she swore lived there. I recall sitting in a chair all day for one entire day, afraid to move, practically afraid to breathe, for fear that movement would make the utter despair I felt inside even worse. It felt like standing, during an earthquake, on the brink of insanity, where even one small tremor would send me tumbling into the chasm below.

But I wasn't crazy. I had Lyme. I had an infection that was affecting my brain, and that's all. And I have gotten better. I continue to heal, and of course that is also my deepest desire for you. So what about this new test?

Evidently, there are neurological manifestations that have non-neurological root causes.  It is important that doctors understand this when dealing with patients who present with neurological difficulties and challenges.  The new Lyme test is capable of assessing whether someone has had "an immune response to the Lyme disease bacterium Borrelia burgdorferi and whether the infection is currently active."

The test has been developed by Pharmasan Labs, Inc. in collaboration with NeuroScience, Inc.

From their website:

NeuroScience, Inc., by virtue of its name, has its foundations built on understanding the nervous system. Our understanding of the nervous system has led us to a point where, from a biochemical point of view, we must further consider the role hormones, cytokines, and neurotransmitters play, not as the messengers of individual systems, but rather as parts of a much larger picture. Our goal is to embrace a more global perspective on health that incorporates facets of neurology, immunology, and endocrinology. This newly emerging field has been defined as “neuroimmunology” and it forces us to rethink our approach to health and disease. Our adoption of the principles of neuroimmunology have resulted in an expanded menu of laboratory services that now include a wide spectrum of neurological, endocrinological, and immunological markers.

There are a lot of big words in that paragraph. Don't let them put you off. I think this test, this lab, may be onto something very important here. I'm looking forward to talking with their scientists very soon. Stay tuned for an interview, and meantime read up about their new Lyme test (and how you might use it), on their website.

Be well.
Think positively.
We can get better.



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NIH develops more sensitive test for Lyme disease

Reported in the June, 2010 issue of Clinical and Vaccine Immunology:

New Test May Simply and Rapidly Detect Lyme Disease

Researchers from the National Institutes of Health have developed a more sensitive test for Lyme disease that may offer earlier detection and lower cost. The details are reported in the June 2010 issue of the journal Clinical and Vaccine Immunology.

Lyme disease is a bacterial infection transmitted to animals and humans by deer ticks. A skin lesion at the site of the bite is one of the first signs of infection followed by potential neurological, cardiac, and rheumatological complications upon entering the bloodstream. The Centers for Disease Control and Prevention currently recommends a two-step blood test for diagnosing the disease, however, several limitations include low sensitivity during the early stages of infection, significant time and expense, and an inability to distinguish between active and prior infection.
In prior studies the luciferase immunoprecipitation system (LIPS) test showed promise at detecting a variety of infectious agents including viral and fungal pathogens. Here, LIPS was evaluated for its ability to detect antibody responses to Borrelia burgdorferi proteins in blood samples taken from a patient group (some healthy and some with Lyme disease) as well as a control group. Results showed that diagnostic levels of 98% to 100% were achieved using LIPS in conjunction with the synthetic protein VOVO.

"These results suggest that screening by the LIPS test with VOVO and other B. burgdorferi antigens offers an efficient quantitative approach for evaluation of the antibody responses in patients with Lyme disease," say the researchers.

(P.D. Burbelo, A.T. Issa, K.H. Ching, J.I. Cohen, M.J. Iadarola, A. Marques. 2010. Rapid, simple, quantitative, and highly sensitive antibody detection for Lyme disease. Clinical and Vaccine Immunology, 17. 6: 904-909.)
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Want a Lyme test that looks for antigens?

"We have to go on," says Tom. "We can't change yesterday, but the thing that keeps us going is that sooner or later we're going to catch that bug in time, and save someone from going through this pain."

Tom was sick and suffering with mysterious symptoms for nine years before a test finally convinced one of his doctors that he did indeed have Lyme disease. At that point, he began taking antibiotics. In the first month, severe Herxheimer reactions made him even more ill than he had been without treatment, but he continued for five months. Three years later, he now feels better in most ways. Occasionally, he has bad days that he attributes to the Lyme bug, but feels that for the most part, it is suppressed.

"I thought I was dying," he says. Hit by a massive anxiety attack while driving through Kansas, he experienced such debilitating vertigo that he had to pull the car over to the side of the road. "Everything was spinning wildly around me."

"I had lost track of the number of doctors I went to for help over those nine years. One doctor in Massachusetts, who I knew thought I was crazy finally told me that he thought I was crazy. He told me there was nothing wrong with me, and recommended psychiatric help."

"He told me that he thought I was an 'attention-seeker'."

I said to him, "Look, doc. I'm a concert pianist and a concert organist. If I want attention, all I have to do is book a recital. I don't need attention from you."

The test that finally clinched the correct diagnosis for Tom is a special kind of technique called Flow Cytometry. It is available at the Central Florida Research Laboratory, located in Winter Haven, FL. Instead of looking for the antibodies that build up in response to a Lyme Borreliosis infection, the Flow Cytometry technique finds the Borreliosis antigens directly.

Since Spring 2007, the CFR lab has tested several thousand people for Lyme disease. Blood samples arrive from locations all over the globe,  including all over Europe, where Lyme disease is known simply as Borreliosis.

In addition to testing people, CFR also tests animals for Lyme. Please refer to the CFR website for more information about the Flow Cytometric Lyme test for pets and people.

Central Florida Research Laboratory
Winter Haven, FL
Medical Director: Clifford H Threlkeld, DO, FCAP
Phone Number: (863) 299-3232
Fax Number: (863) 299-3355
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New Lyme test for early detection

Here's a piece of good news. If you live in the Lyme-endemic region of Milford, CT, you have a new option for testing. And -- unless you have Aetna -- your insurance plan should cover it.

Pathologist Sin Hang Lee, MD, and his team have developed a DNA test for early Lyme detection. Details are available in the American Journal of Clinical Pathology. The test is the first of its kind. I recently talked with Dr Lee about the new test, which has been in use at the Milford Hospital for about one year. Click to listen to our conversation.

Early detection is extremely important. People who are diagnosed with Lyme in the early stage have a good chance of receiving treatment that will cure them, and they will have no further complications from the disease. The DNA test eliminates the false positives that are problematic in the traditional Lyme tests, specifically the Western Blot and the ELISA.

The test is good news for people in the Milford area who suspect they've been bitten by a tick. Reports from other regions in the NE, such as Portland, Maine, are already warning of an increase in tick bites this year.

And it's only April.

According to the announcement of the new DNA Lyme test, "physicians at the Milford Hospital Emergency Center and Walk-in Urgent Care Center, who see about 40,000 patients a year, usually order the traditional antibody testing and the new DNA test for patients presenting with Lyme disease-like symptoms. Most insurance companies except Aetna will pay for the test."

Patients and physicians interested in information on this DNA test may call George Poole, manager of Milford Medical Laboratory, at 203-876-4496.

Listen to our interview with Dr. Sin Hang Lee about the Lyme DNA test.
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Bring testing into the 21st century

How many times have you wondered why the flawed technology of the Western blot and the ELISA are still the standard test for Lyme? Hasn't anyone figured out a better, more sensitive test by now? New research is being done with twenty-first century technology, such as genomics and proteomics. More sensitive tests mean that greater numbers of people infected with borrelia would have a chance to begin treatment before Lyme enters the later stages. A person who tested negative for Lyme with the Western blot may actually test positive when tested for certain protein markers.

Pamela Weintraub, author of
Cure Unknown: Inside the Lyme Epidemic, and senior editor at Discover Magazine, pulls no punches in a recent post about the IDSA's choice of panelists. The panel that has been assembled seems likely to merely reaffirm the old guard, and not consider new University-based scientific research.

"As someone who has traveled the country for six years interviewing these scientists to write my book,
Cure Unknown, I can tell you unequivocally that many of the top researchers at the top institutions in the world do not think the original IDSA panel got it right," writes Pamela.

"Are recommended
treatment protocols truly curing most of those with early, invasive borreliosis, as IDSA contends?"

"The answers won’t be found in the twentieth-century technology of the Western blot, by today’s standards crude yet still trotted out by IDSA as evidence absolute that they are right. (The Western blot for Lyme is so flawed that even its major manufacturer says he has found numerous "band" patterns more accurate than the one in use today.) Instead of relying on flawed 20th century technology, we must look to the science of the twenty-first century, including state-of-the-art genomics and proteomics that allows for the sequencing of every gene and protein involved in every stage of Lyme. With evidence of this calibre we won't have to fight over the truth: We will know what's going on."


Stay tuned for more
LDRD interviews with top researchers, such as Dr. Eva Sapi of the University of New Haven. Dr. Sapi directs the graduate studies program for research into Lyme and other tick-borne diseases.
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Lyme tests are inaccurate

Raphael Stricker, MD, talked with me last week about the pros and cons of the existing Lyme tests. As it turns out, there are mostly cons.

Dr. Stricker was the president of ILADS from 2005 to 2007, during which time the organization grew to nearly 400 members and accomplished a great deal of work on the behalf of Lyme patients, including the establishment of the guidelines for the treatment of Lyme.

The Western Blot and the ELISA tests are inaccurate. "They have 'coin toss sensitivity,'" Stricker says. "Which means if you flip a coin you get the same results as doing a commercial test.

"The current AIDS test has a 99.5% sensitivity, which means it misses one in two hundred AIDS cases. So, compare one out of every two Lyme cases that are missed? One in two hundred AIDS cases. I mean, that's a pretty big difference," he says. "What we need in Lyme disease is a test like the AIDS test, that is that sensitive, and that accurate."

You can listen to the interview as a member, please join
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