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Lyme Disease in the news

Yolanda Foster speaks about Lyme

"The light had gone off in my brain." Yolanda Foster speaks about Lyme.

“We live in the most extraordinary country, with the best doctors in the world. But the truth is, we don't have proper diagnostic testing,” Real Housewives of Beverly Hills cast member Yolanda Foster told the audience at the Gala held for the Lyme Research Alliance on April 6. The LRA honored Foster with the Star Light Award, in recognition for her advocacy and for serving as a role model for people suffering with Lyme.

In her acceptance speech, Foster describes her frightening decline from “being an outspoken, multi-tasking social butterfly, to being trapped in a mentally paralyzed cocoon.” Doctors did not find any indication of Lyme disease in their standard blood tests, so they missed important clues. She knew something was wrong, intuiting that it may have been an infection in her brain. But doctor after doctor misdiagnosed her, advising her to cut back on her busy schedule. She was put on subscription drugs.

“Sleeping pills, Adderall, steroids, and anti-depressants,” she recalls, reciting the litany of drugs she was given. “[But] I was so
so not depressed,” she adds. Increasing frustration and annoyance were closer to the mark.

After a two-week stay at Cedars-Sinai Hospital in Los Angeles that achieved nothing, Foster returned home to bed. Hopeless, and believing that in her native Europe she might find a doctor to help, she to embarked on the long flight from California to Belgium. After a test showed spirochetes in her brain, she finally received a correct diagnosis of Lyme Neuroborreliosis and co-infections.

Thankfully, zeroing in on the pathology leads to treatment, but as anyone who has been through this crazy-making process knows, Lyme treatment is a double-edged sword. To begin with, it is not so cut and dry. And antibiotic therapy also causes Herxheimer reactions which can be as debilitating as the symptoms themselves. Friend Suzanne Somers led Foster to the Sponaugle Wellness Institute in Clearwater, Florida. Foster reluctantly left her family to go for a 6-week treatment. She reports that now she feels about 80% back to normal.

The LRA event raised more than $1 million to fund research for finding a cure for Lyme and other tick-borne diseases. Doctors Steven Schutzer, M.D., of the University of Medicine and Dentristy of New Jersey, and Mark Eshoo, Ph.D, director of new technology at Ibis Biosciences, were also honored at the Gala and received an award for their significant contribution in research and treatment in the quest to find a cure for Lyme.

Please watch Yolanda Foster's speech.
http://www.youtube.com/watch?v=tO8ZDvwTXKw

Interview with director of the Lyme Research Alliance
http://www.youtube.com/watch?v=-uDyb0NyRog



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NE docs wise to lyme -- but SE docs say no Lyme

The more I learn about Lyme, the more mysterious it seems. And not the disease so much, but the approach that’s taken by our medical professionals. It is a disease with layers of complexity. You can be tested for leukemia, for example, and the results are either positive or negative. Not so with Lyme.

Awareness of Lyme and early
treatment is increasing in the Northeastern US. However, I’ve seen anecdotal evidence that patients also get Lyme disease in the Southeast. On the LDRD Facebook page, in a recent post about Lyme in Georgia, several people living in a smattering of southern states -- Kentucky, Tennessee, Alabama, Georgia -- chimed in to affirm that they’d been diagnosed with Lyme and had caught it at home.

In a casual conversation with an epidemiology professor and veterinarian from Georgia, I learned just last week that there is no Lyme in our region. He agreed that there are other egregious diseases caused by ticks in the SE, but “we don’t have Lyme.”

My dentist here in NC told me the same thing. I imagine most
doctors in the area would concur.

All of this makes me curious. Consider this. When we as Lyme patients approach our healing from all the fundamental dimensions that we can, from body, mind, spirit and shadow, we’re taking more perspectives than most of our doctors are (there are exceptions). Our healing is more whole, and more effective in my experience, when we work on all of these dimensions.

When the CDC declares that there is no Lyme disease in a certain region, their evidence is not, I would argue, taking other perspectives. It is overlooking some equally fundamental dimensions. Cases of Lyme that are diagnosed in the SE, for example. Can we really just ignore that? Pass it off as an anomaly?

Doctors base their conclusions on empirical, scientific evidence. And correctly so. That’s the way it should be. But when there is anecdotal evidence, isn’t that also proof? Someone is surely diagnosing some cases of Lyme in the Southeast. What is going on there? This just doesn’t square with the rational conclusiveness associated with medical people. Could it be that doctors and the CDC are simply too busy, and the catalogue of diseases is too full, to include another?

And yet, the IDSA does seem to be changing. Ever so slowly. At least, in the Northeast they’re changing their approach to treatment and diagnosis in the early stage of Lyme. CBS news in Pittsburgh ran this story recently:
Doctors Change Treatment Recommendations for Lyme Disease.

As this news clip points out, doctors in the NE region are becoming aware of the critical need for early Lyme disease treatment. Patients presenting with a bull’s eye rash, who have caught it immediately, are likely to get antibiotics right away. They have a good chance of beating Lyme in its early stages.

This is good news, because of course the not-so-good news is that Lyme cases are rising alarmingly quickly in Pittsburgh. This year 150 cases have been recorded, up from 10 or 15 last year. 70% of the
ticks in the region are believed to carry the bacteria which causes the Lyme infection.

But apparently they stop at the border. So in the Southeast, we’re not dealing with Lyme. Except of course, anecdotally.

Interesting also to note that Romney is seeking to align his campaign with ILADS. Obama has also acknowledged the disease and its enormous financial implications. Awareness in Washington, DC is steadily but slowly increasing.

Lyme is a political issue, and not simply because of the definition of politics: many (poly) blood-sucking critters (ticks).


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Proposed Lyme legislation ignored by IDSA

In July, a Congressional subcommittee met to discuss a Lyme disease bill that is championed by a number of politicians in the Northeast US. The bill urges congress to approve a national strategy and money for research into prevention, diagnosis, and treatment of Lyme disease. A federal strategy would heighten awareness in all public health agencies.

The hope is that when people who are sick and infected with Lyme go to their local clinic, they may actually be able to receive medical help from doctors who understand the critical importance of early treatment. As it stands, clinics across the US are staffed by medical professionals who remain largely ignorant of it.
Lyme misdiagnoses are rampant and dangerous.

The powerful doctors’ group, the Infectious Diseases Society of America, was absent during the meeting and has remained silent about the bill. You may remember that in 2009 the IDSA opposed a similar bill, claiming that it lacked support from the scientific community.

Senator Richard Blumenthal, who, cosponsored the bill, states that Lyme disease has increased to epidemic proportions. It is the sixth most common reportable disease in the US. In the Northeast, it is second only to
chlamydia. These stats are according to Dr. Ben Beard, director of vector-borne diseases at the federal Centers for Disease Control and Prevention.

From the article “
Lawmakers call for national Lyme disease strategy,” in the Wall Street Journal, July 12, 2012: "'The tick problem is growing. The Lyme disease problem is growing," said Sen. Jack Reed, D-R.I., a cosponsor of the bill in the U.S. Senate. "This requires resources."

The legislation provides for the establishment of an advisory committee made up of researchers, patient advocates and agencies, as well as the coordination of support for developing better diagnostic
tests, surveillance, research and other efforts.'”

Will this be the year that legislators do the right thing and go on the attack against Lyme disease? I continue to hope that influential IDSA doctors – who see their own patients ravaged by the disease – will soon take a stand for more awareness of this increasing epidemic.

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Lyme disease at the center of JP Morgan failures

A tiny tick can wreak big damage. We know the terrible health issues that Lyme bacteria and its attendant co-infections can cause one single person, affecting them on every level and in every aspect of life.


But people don’t exist in a vacuum. For every person suffering with Lyme disease, numerous others are affected in countless ways. They don’t have to have the disease, they may just be related to, work with, or care for someone who does: their co-worker, aunt, Facebook friend or significant other.


An interesting article in the New York Times reveals that Lyme disease lies at the center of the discord at JPMorgan. Turns out that a key leader, who evidently knew the critical importance of managing relationships, was unable to preside over meetings as usual because she got Lyme. And due to the absence of her level-headed influence, certain people lost sight of their duties. Narcissism abounds in power positions.


The NYT story reports that the bank’s Chief Investment Officer, coolheaded executive Ina Drew, had expertly handled key personnel relationships and directed the organization during peak moments of the brutal financial crises of 2008. However, her guidance was dramatically absent during 2010 and 2011.


“But after contracting Lyme disease in 2010, she was frequently out of the office for a critical period, when her unit was making riskier bets, and her absences allowed long-simmering internal divisions and clashing egos to come to the fore, the traders said.”


Conference calls between deputies in Ms. Drew’s New York and London unit “devolved into shouting matches,” according to a trader quoted in the article. Without her to expertly manage negotiations between divisive personalities, egos spun out of control and distracted everyone from their duties.


Of course, Lyme disease is not the sole cause of the banking giant’s financial woes. For our purposes here, the financial failures are besides the point. What I find intriguing is how the story clearly illustrates the power of relationships, the impact of leadership, and the mayhem that resulted because one key person in a position of leadership got Lyme disease.


The impact of Lyme on our relationships
Think of the way your own suffering has impacted your relationships, how it has colored the everyday decisions of your friends and loved ones. Chances are, you’re not at the center of a monolithic banking meltdown. But like all of us, you have duties and responsibilities. You may be the head of a family or company that depends on you financially, emotionally or otherwise. How do you manage to cope with the changes Lyme disease has forced on you? How do they manage without you, when they face meltdowns of their own?


Another key theme woven through this story is vulnerability. We work hard to make something of our lives, pour endless love and resources into developing and protecting our families and our life’s work. It’s easy to fool ourselves into thinking we’re invulnerable to disease, or to anything so small as a tick.


It comes as no surprise that ticks will bite the movers and shakers of the world as easily as the working class. Perhaps because of her notoriety, Ina Drew’s case of Lyme will serve to shed more light on the disease, the numbers of people affected, the ease with which Lyme can be contracted and the difficulties that so many of us encounter in getting diagnosed and seeking treatment.


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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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Lyme doctor punished for helping children

Pediatrician and hero to many moms and kids with Lyme disease, Dr Charles Ray Jones is being "harassed" by the medical community for treating Lyme disease, says state Rep. Jason Bartlett (D-Bethel).

Bartlett sponsored a bill that was passed unanimously by Connecticut State Legislature in 2009 that protects doctors who treat chronic Lyme with antibiotics over extended periods. But although it may protect doctors in the future, it's not doing anything to protect Dr Jones right now.

"The law 'allow[s] a licensed physician to prescribe, administer or dispense long-term antibiotics for a therapeutic purpose to a patient clinically diagnosed with Lyme disease.'"

Jones has been ordered  to hire a monitor to examine his patients charts every month, given four years of probation and smacked with a $10,000 fine. Jones expects the monitor may cost $2,000 - $10,000 per month. He says "it's hopeless," because he simply cannot afford it. But what really burns up his supporters is that the good doctor appears to be the mouse in a game of legal cat-and-mouse being played out at his expense.

In a New Haven Advocate article from July 13, Time Is Running Out For Controversial Chronic Lyme Disease Doctor Betsy Yalga writes,

"None of Jones’ patients has complained, he’s quick to point out, and none has been harmed by his treatment. He’s never been sued for medical malpractice. The charges against him have been levied by fathers involved in custodial battles over their children. In those cases Mom was in charge of treatment and Dad was in charge of payment and disputed the need for treatment. By complaining, Jones’ supporters say, Dad could get back at Mom and possibly skirt paying a costly medical bill. There were no allegations of harm done to the children."


Please listen to a brief interview with Dr Charles Ray Jones in the member’s portal.
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Jessica Wojenski, teen on a mission to educate people about Lyme

As reported in the Hollis Brookline Journal, teenager Jessica Wojenski, who recently graduated from New Hampshire's Bedford High School, has struggled to recover from Lyme symptoms severe enough to keep her out of school much of her junior and senior years.

“There’s such a lack of awareness out there about this that unless you scare people into realizing, they’re never going to get it, even though I hate doing that,” Jessica told the reporter.

I know just how she feels, and you probably do as well, if you have suffered with debilitating Lyme symptoms. Jessica is dedicated to raising awareness of the complications the disease can cause. Evidently she did not show symptoms in the early stages, which is a problem that many of us deal with -- not even suspecting Lyme disease as a cause of our painful and disorienting symptoms until the disease has progressed beyond the early stages. Kudos to her, and we hope she continues to find support in her New Hampshire community, which is located in the hot zone for ticks and Lyme infections.

When you are first diagnosed, you can easily be overwhelmed by information about what to do. What will work, what won't? Who should you consult and who can you trust as a reliable resource?

I agree with Jessica, there is not enough awareness of the serious nature of Lyme disease out there. Like her, I contracted Lyme about 5 or 6 years ago, and my painful symptoms and treatment quickly made it impossible for me to live my life in a normal way. Since then, my mission has also been to help educate people about this disease through sharing my interviews with Lyme disease experts and people who are living normal, healthy lives again, post-Lyme.

My life is now back to normal, thankfully, and my hope is that yours will soon be too. This is a good place to start educating yourself and clear up any confusion. Our list of "10 things you need to know about Lyme," is available immediately, when you sign up for our free newsletter.



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Working with Lyme brain - Under Our Skin

Under Our Skin filmmaker Andy Abrahams Wilson discussing his film on The Wrap.

I have to laugh now, because in retrospect it's funny, but at the time it was embarrassing. It's a memory of my interview with Andy, which I conducted a few years back before the Turn the Corner Foundation stepped in to help fund his film. I'm sure he didn't think much of the incident.

In our conversation, Andy was very gracious. He spoke eloquently about his sister's trouble with Lyme disease, and later, his feeling of helplessness when a close friend of his then discovered she also was suffering from late-stage Lyme. He'd been so moved to do something about the misunderstandings around Lyme symptoms and Lyme treatment, that he entered into the long process of making Under Our Skin, which is still gaining ground and helping the Lyme community to get the word out.

The embarrassing part was that in interviewing him, I couldn't get my phone recording equipment to start correctly. Lyme brain was so intense at the time for me, that I couldn't fix the problem. I had to hang up and call him back. I was too proud to admit that I was having a hard time that day. I couldn't tell whether it was the equipment or me who was glitching. However, Andy was incredibly kind and generous, and allowed me to reschedule our talk for later that day.

It wasn't the first time that had happened. A month earlier, I'd gotten through an interview with Dr Christine Horner, but I could barely hear her the entire time. My tinnitus was roaring, but that wasn't it. It was that awful, foggy Lyme brain again. It took away my ability to multi-task and hold two thoughts at a time. Normally I'm a fairly good troubleshooter, but there was no way I could troubleshoot and conduct an interview at the same time. It didn't even occur to me to ask if we could reschedule. When the interview was complete I hung up, and discovered that I'd put my earphone in backwards. No wonder she'd sounded faint the whole time.

These are not pretty memories.

However, remembering the bad times allow me to measure how far I've come back into balance. Using my brain is one of my favorite hobbies. I guess I'm grateful for all my Lyme experiences now, since I've come out on the other side, and can actually work my recording equipment pretty smoothly again...usually.

What about you? Care to share a Lymie memory? Please share your story in the comments!
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Lymelife--see it on DVD now

Lymelife has just been released on DVD. If you missed it in the theaters, buy it or rent it this weekend. First and foremost, it's a heartbreaking story about falling in love and growing up, funny and powerful and poignant. But it's also a story about someone with Lyme. Through the character of Charlie, the movie reveals the unflinching pain--both physical and psychological--that people suffering with Lyme disease experienced in that era.

Even in the Lyme epicenter of Long Island, NY, in the 70s and 80s, Lyme disease was generally considered a made-up thing. Pain pills were subscribed to people who were suffering. Their struggle with sanity and physical debilitation was sad and frightful for their loved ones to witness, but if you were sick and there was no clear reason for it, you were basically left to fend for yourself. The disease was suspected to be psychosomatic, which meant that you somehow brought it on yourself.

Actor and director Steven Martini talked openly with me about the personal nature of his film, which is largely autobiographical. Sparked from the depths of his first experience with true love, the film turns on his character's recognition that life unfolds in tenuous, often dangerous ways. His girlfriend's father is inflicted with this mysterious illness, and the young man is confronted with complexities he is barely prepared to comprehend.

Listen to my conversation with Steven Martini about his latest film, Lymelife.
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ILADS training new Lyme docs Oct 24-25

Is your doctor Lyme literate? If not, suggest they get educated by the world's top physicians and researchers. Please tell them about this important upcoming gathering.

The annual 2009 Lyme Disease Professional Conference will be held on October 24 - 25 at the Gaylord National Resort in Washington, DC. The conference is an opportunity for Lyme-educated doctors and scientists to train the next generation of medical professionals interested in helping to improve the quality of care for people with Lyme.

ILADS recognizes that the growing numbers of people suffering with Lyme and other tick-borne related diseases can be helped immensely by educating health care professionals in every field. Last year's San Francisco conference was hugely successful, and this fall's lineup promises to be even better.

ILADS president, Dr Daniel Cameron, writes, "This ILADS conference also provides a forum for researchers to present their results in the emerging topic workshops setting or in the research workshop. Together the conference will provide the basis for the evidence-based treatment of Lyme disease."

Write lymedocs@aol.com or call 301 263 1080 if you have any questions.
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Ted Kennedy dies. Will insurance reform survive?

Health insurance in the US is in the floodlights, especially with the news of Senator Ted Kennedy's passing. He carried the issue of health care insurance reform over the course of his long career in congress. Speaking up once again for this issue was, he said, his primary reason for fighting his illness last year. How will his passing affect the fierce fight for change?

Health care reform may end with passing of its torchbearer: Ted Kennedy
by Bob Graham, Insurance & Financial Advisor

From the article: Congress needs a Ted Kennedy to pull things together in the fall. Kennedy had the ability to cross aisles, to get Republicans and Democrats to join forces on key reform efforts. No one else had the power of Ted Kennedy to get Congress to act on these big-ticket items like No Child Left Behind, the American with Disabilities Act, voters and civil rights legislation, and the Children’s Health Insurance Program.

Please share your thoughts on health insurance reform, as it relates to your experience with Lyme disease.
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Clashing views at the IDSA hearing

Thursday's day-long IDSA hearing in Washington DC offered a fascinating glimpse into the opposing perspectives on Lyme disease treatment. Scattered into the testimony were flashes of tension and emotion. If you crave power point presentations, it was right up your alley. It was also an exercise in stamina for the participants. The entire hearing will be archived online for one year at idsociety.org.

As the hearing proceeded, I was most interested in the tension developing between the presenters' testimonies. For example, Eugene Shapiro, MD, a Lyme disease specialist at Yale University, stated that he thinks it is very important to engage in additional research about how to help persons suffering from medically unexplained symptoms. He also stated that in his view, there is "no scientific justification for changing current IDSA recommendations related to duration of antibiotic treatment of Lyme disease."

Then came Brian Fallon, MD, of Columbia Medical School. Notably, Dr Fallon began his presentation by stating that he is not a member of either IDSA or ILADS. He's a psychiatrist belonging to the American Psychiatric Association. In direct opposition to Dr Shapiro's statement, Dr Fallon referred to a blind study in which repeated antibiotic treatment has been found to be effective, yet is not recommended due to the risks. He also made it clear that repeated antibotics have been shown to be effective for the fatigue associated with Lyme disease. However, not for pain or any of the other symptoms related to Lyme.

Dr Fallon suggested that doctors could approach this risk factor by talking to patients about the risks. Discussing the risks of medications is something, he says, doctors do every day. He also mentioned that the testing has only been done on two specific antibiotics, and added that it might be a mistake to make recommendations based on those tests about antibiotics in general.

The most emotional moment of the hearing (that I saw) occurred when Dr Ken Liegner, ILADS member, showed a video clip of his patient Vicki Logan from June 22, 2001. Vicki had sought all kinds of treatment, according to Dr Liegner, in trying to deal with what he reminded the panel is still to be considered a "formidable pathogen." As the result of a misdiagnoses, she had been given coricosteroids early in her treatment. After all her treatment, spirochetes were found in her pericardium (the thin membrane that surrounds the heart).

The video was evidently recorded as Vicki lay dying in a hospital bed. She is so weak with advanced Lyme disease that you can barely make out the words as she says, "I hope that what happened to me will benefit others who wind up in the same situation." She also had words of praise for Dr Liegner, telling him on-camera that without his help she wouldn't even have lived as long as she did. It was a tearful moment for me.

I'm curious about your opinion. Does your doctor (or doctors) talk to you about the risks involved in the treatment options for Lyme disease?
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IDSA hearing - message from Tina Garcia of L.E.A.P.

On the eve of the hearing in DC, patient advocate and panel member Tina Garcia sends us this message. I will be interviewing Tina very soon, so watch this blog - it will be posted for free to anyone who wants to hear directly from her what the hearing was like. Please feel free to forward the following note to any other Lyme groups who might be interested:

I just wanted to send out a huge thank you to all on Eurolyme and other groups who have shown me so much support! I am here in DC anxious to attend the Hearing!

I thought I'd write to let everyone know that the lime green ribbon campaign is being done in conjunction with media coverage of the Hearing and it is not a demonstration of any sort.

It is a way to get more media attention at the Marriott across from the Ronald Reagan Building, where the Hearing will be held. I am here and watching it all unfold and I assure you that it is an awareness campaign and not a demonstration. It is defintely not a campaign that will negatively effect the Hearing or offend the Review Panel in any way.

This is a very critical moment for the Lyme community, patients and docs. I would ask everyone to please focus strongly on the bond that we all share in this community and muster all the strength and courage we can to unite as a community. We must rise above the disagreements and conflicts that occur between advocacy groups and form a cohesive community of patients and doctors.

We must not allow our actions to be dictated by reactions to efforts that might make us stray from the path we are on. Let's unite and work together, for there is strength in numbers. United we stand -- divided we fall. We can stll hold on to the uniqueness of each of our advocacy groups, but at this crucial hour, we must be willing to work together and appreciate each other's uniqueness and admire each other's strengths and efforts to make a difference for all.

PLEASE FORWARD THIS TO ALL GROUPS AND LISTS AND DISCUSSIONS ASAP.
I AM PRESSED FOR TIME, SO IF YOU CAN ALL FORWARD THIS MESSAGE FAR AND WIDE, I WOULD TRULY APPRECIATE IT! THANK YOU!

In Solidarity,

Tina J. Garcia
Lyme Education Awareness Program
L.E.A.P. Arizona
www.leaparizona. com
P.O. Box 2654
Mesa, Arizona USA
480-219-6869 Phone
480-830-2788 Fax
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Watch the IDSA hearing live online

If you have ever had trouble getting treated for Lyme disease, or you are interested in long-term antibiotic treatment of Lyme, you probably already know about this Thursday's hearing. If you don't, then you may want to tune in.

The long-awaited IDSA hearing on Lyme treatment is finally happening, Thursday, July 30, '09. You can follow the entire broadcast live online.

Panel member Raphael Stricker, MD, an ILADS physician, is one of the doctors included in our experts interview series. Several of the healthy Lyme survivors included in our Success Stories series have included his patients. Tune in to listen to what Dr Stricker has to say.

We plan to interview many more members of the panel soon, starting with Tina Garcia, a dedicated Lyme patient advocate.

Click the link below for important information about the IDSA hearing:
http://www.idsociety.org/WorkArea/showcontent.aspx?id=14974
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Speak up for Lyme survey

Patient survey

Patient advocate Lorraine Johnson, JD, MBA, of the California Lyme Disease Association (CALDA) will be testifying before the IDSA review panel on July 30. This survey, which takes about 5 minutes to complete, will be used to support her speech. Your identity will remain anonymous.

Lorraine writes:
You can get more information on what is happening with the hearing by visiting the CALDA website at www.lymedisease.org and visiting my blog there by clicking news and blogs and then Lyme Policy Wonk. You can also visit my blog by going to www.lymepolicywonk.org.

Please support the good work that CALDA does by becoming a member and helping us advocate for Lyme patient rights.


If you wish, you can watch the July 30 hearing live on the internet at the IDSA website (idsociety.org).
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IDSA submits letter to Waxman

Things are heating up in Washington DC as the July 30 hearing approaches.

Below is an excerpt from a letter written on June 25, 2009 and sent by the IDSA to US Representative Henry Waxman, Chairman of the House Energy & Commerce Committee. In it, the IDSA makes clear that it opposes the bill regarding Lyme disease treatment (H.R. 1179), which was recently reintroduced in the House of Representatives.

Here is a partial excerpt:
We believe it is important that Members of Congress who are considering co-sponsorship of H.R. 1179 be fully apprised of IDSA’s view, which is aligned with the broader medical and scientific communities’ view, that the long-term use of antibiotics for the treatment of Lyme disease is unproven and potentially harmful to the patients being treated and to the public’s health (due to the potential creation of drug-resistant organisms).

Further, it is IDSA’s position that no reliable evidence exists that supports the designation of Lyme disease as a chronic disease. Two recent reviews -- one published in the New England Journal of Medicine (N Engl J Med 357:14; October 4, 2007) and the other in the American Journal of Medicine (2008) 121, 562-564 -- give evidence-based assessments of Lyme disease diagnoses and the recommended treatments which substantiate our position.
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Where are the articles on Lyme disease?

Dr David L Katz, a medical doctor and blogger for Prevention Magazine, wrote this reductive "preview" of Under Our Skin last year. On the Prevention site, I posted my response to his claim that there is no such thing as chronic Lyme. In his article, Dr Katz admits that he hadn't yet the movie, yet he already had strong opinions about it. I went searching for his post this morning, but it has since been removed. There is very little trace of Lyme disease mentioned in his health blog. I am not singling out Dr Katz for criticism here. However, I find it curious that a popular magazine on integrative medicine doesn't seem to be concerned with Lyme disease anymore.


Here is an excerpt of his 4/25/2008 blog post, which he titled "From the (sub)Lyme to the ridiculous":

A Yale colleague and leading authority on Lyme Disease, Dr. Durland Fish, brought to my attention a documentary film, to be shown at the Tribeca Film Festival in New York, highlighting the devastation wrought by chronic Lyme infection.

The only problem with that is...there is no such thing.


The best available science indicates that chronic infection with Lyme does not occur. There certainly can be, and are, chronic symptoms after Lyme infection- but that is very different from chronic infection. Consider, for instance, that after a bout of polio, some people have a permanent disability. That does not mean they are permanently infected with poliomyelitis- we know for a fact they are not.


There is, unfortunately, a cottage industry in treating "chronic Lyme." That treatment often involves lengthy courses of antibiotics, long after evidence of active infection is gone. Some clinicians are probably engaged in this practice in a genuine, if apparently misguided, effort to help. Others- a far more serious transgression- may be exploiting patient desperation for profit.


As far as I can tell, the documentary on chronic Lyme will be in equal parts compelling, and misleading. The terrible plight of the patients profiled will, and should, tug at your heart strings. But the implication that these are cases of chronic Lyme infection is at odds with the scientific evidence.


Here is my response:

Unfortunately, the vast and often seemingly disconnected array of symptoms, which can include rheumatoid arthritis, arrhythmia, memory loss and crushing fatigue, often lead patients from specialist to specialist, who never choose to investigate whether an underlying bacteria, treatable with antibiotics, could be at the root of their patients' problems. These clinicians could as well be "exploiting patient desperation for profit." Countless people have been misdiagnosed and under-diagnosed with Lyme disease, subscribed medicines that replicate the Lyme bacteria, causing the patient further, and even permanent, harm.



Comparison of the Lyme bacteria, Borrelia burgdorferi, with poliomyelitis proves very little. The spirochetal bacteria that causes Lyme disease is able to evade the body's immune system, and it is scientifically well-documented that tests for Lyme infection are often inaccurate.

Perhaps a "cottage industry," as you call it, has developed for a good reason. People are suffering. Many doctors are unwilling to consider Lyme infection as a cause of their pain. Numerous medical researchers and physicians recognize that gaps exist in our current understanding of the Lyme bacteria. More scientific studies and more medical research is necessary.
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IDSA announces presenters for hearing

IDSA Announces presenters for its July 30, 2009 Hearing of the Lyme Disease Review Panel
Posted June 22, 2009 on the IDSA website

On July 30, 2009 (8:00 AM – 5:00 PM EASTERN), IDSA will hold an all-day hearing of its Lyme Disease Review Panel to hear testimony from patients, physicians and scientists on its 2006 Lyme Disease Guidelines. Individuals presenting and the order in which they will present follows:


* Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, Arizona
* Lorraine Johnson, California Lyme Disease Association (CALDA), Ukiah, California
* Daniel Cameron, MD, International Lyme and Assoiciated Diseases Society (ILADS), California
* Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD
* Ben Luft, MD, The State University of New York, Stony Brook, NY
* Allison Delong, ILADS, Providence, RI
* Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO
* David Volkman, MD, Nissequogue, NY
* Sam Donta, MD, Falmouth, MA
* Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven CT
* Brian Fallon, MD, Columbia University Medical Center, New York, NY
* Sunil Sood, MD, Schneider Children's Hospital at North Shore, Manhasset, NY
* Ken Liegner, MD, ILADS, Armonk, NY
* Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA
* Steven Phillips, MD, ILADS, Wilton, CT
* Art Weinstein, MD, Washington Hospital Center, Washington, DC
* Raphael Stricker, MD, ILADS, San Francisco, CA
* Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NY

In-person attendance at the hearing is by invitation only. However, the Hearing will be broadcast live, in real-time via webcast from the IDSA Website (www.idsociety.org/lymedisease.htm) and will be archived on the web for viewing at your convenience. Information on how to attend via webcast will be posted on the IDSA website no later than one week prior to the hearing.
Comments

Lymelife

A ragged-looking deer roams through Charlie Bragg's backyard on densely forested Long Island. Charlie (superbly portrayed by Timothy Hutton) suffers from mysterious symptoms that prevent him from working, and torture him perhaps even as much as knowing his wife is dallying with her machismo boss.

It's the late 70s. Lyme disease is beginning to grab the attention of NE residents. Some of them observed a correlation between a tick-bite and a litany of disturbing symptoms ranging from rheumatoid arthritis to mental derangement. In Charlie's house, prescription bottles crowd the bedside table. He's taking penicillin, but we aren't clear how effective it is on his illness. Sometimes he seems almost normal, stringing up Christmas lights. Sometimes when he's alone, he writhes in pain.

He's not the same man I married, rants his desperate wife. His teenage daughter feels compassion, but she's powerless to help. Her own inner conflicts and the pulls and stabs of young adulthood are more than enough for her to handle. A hint of rot underlies the nice suburban constructs, which are coming to a head most visibly in the character of Charlie.

Some of Charlie's scenes made me shudder. As bad as Lyme disease is, and as frustrating as the controversies around it have become, at least we're not still living in the 1970s, when it was new. Some headway has been achieved since then.

Have you seen the movie? What do you think?

(Members, watch for my upcoming interview with Lymelife producer, writer and director, Steven Martini.)
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Tell your Lyme story to Obama

We were asked to post the following message about telling our Lyme stories to President Obama:

One of our San Diego support group members has made contact with a Barack Obama volunteer who is also partly responsible for getting the movie UNDER OUR SKIN shown in San Diego. This is an excerpt from their email:

"Hearing your story yesterday when we talked, helped me to be even more inspired to bring the message of Lyme Disease and Health Care Reform to as many people will listen. I encourage you to help bring to light the plight of Lyme patients. This is a once in a lifetime moment when we can share our health care stories. The Obama administration is listening and they want to help. Please visit
http://my.barackobama.com/page/content/healthcarestory to share your story and take the time to encourage all Lyme suffers in your association to do the same and then forward this message on to more Lyme sufferers. The more Lyme stories received the more likely they will get recognition at the federal level. Lyme disease so poignantly illustrates all that is wrong with health care in America."

Regardless of your political opinions, this is an opportunity to get extensive media coverage about LYME Disease, which can only be a benefit to those currently suffering, and hopefully prevent the future suffering of others.
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MSNBC prints story of Lyme suicide

MSNBC has posted a heartrending story by NBC news producer John Baiata about the suicide of his beloved sister Sue, who could no longer bear the pain she suffered from chronic Lyme Disease. Our thanks goes out to the Baiata family and to MSNBC for sharing this painful story. I urge our readers to drop them an email thanking and supporting them for helping us bring this issue to the greater public.

I know I'm not the only one of us who was moved (to tears) also by the overwhelming number of intense responses to the story. Among them was a statement by Pat Smith, reminding readers that children are at the greatest risk for Lyme, and that a valuable bill in support of Lyme disease research is still mired in political muck. Here is a partial quote of her comment:

"Another Congressman, Christopher Smith (NJ), who introduced the bill, HR 1179, said last year on the floor of the House, regarding Lyme disease, there is a "cover-up.” We echo that 1000 times over. MSNBC, I hope you will put all the power and resources you possess behind exposing that cover-up soon, as children ages 5-9 and 10-14 are at the greatest risk of acquiring Lyme disease, and the prevailing attitude is allowing government agencies to remove children from mothers who are having them treated with ANTIBIOTICS for Lyme disease by LICENSED physicians.

Meanwhile, our heartfelt sympathy goes out to the Baiata family. Many of us have experienced preventable suffering and tragedy due to this disease. However, the tragedy is usually not due to Lyme disease itself but to politics, cover-up, vested interests, and bias, often a much bigger threat than the Borrelia burgdorferi organism causing Lyme disease, which we could overcome if the cover-up were exposed fully in the light of day."


- Quoted from MSNBC.com article by John Baiata, All she lost: My sister's battle with Lyme disease, from a comment made by Pat Smith, President, Lyme Disease Association
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Review of Lymelife

Lymelife is categorized as a comedy, however, it's the sort of black humor that scorches because it strikes a chord. Charlie (Timothy Hutton) is depressed and on antibiotics for Lyme disease. Here's an excerpt of film reviewer Rob Nelson's critique of the movie, which previewed at the Sundance Film Festival last fall:

The film centers on thin, 15-year-old bully magnet Scott (Rory Culkin), whose older, bulkier brother, Jim (Kieran Culkin), prepares to ship off to military duty, and whose longtime crush, Adrianna (Emma Roberts), reluctantly begins to return his timid gaze.

Adrianna's pill-popping father, Charlie (Timothy Hutton), shoots self-made targets in the woods with a rifle, dressed in suit and tie.

Alec Baldwin plays Mickey, Scott's father, whose underappreciated wife, Brenda (Jill Hennessy), duct-tapes her youngest son from head to toe to protect him from Lyme disease. Periodic cutaways to wandering deer and the real or imagined threat of wood ticks -- not to mention scenes of believably harsh marital bickering -- serve the pic's point that these frightened, emotionally starved people, kids included, are animals at best.


Read the entire review of Lymelife from Variety online.
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Lyme goes to the movies



Can it be a good thing when characters in movies and soap operas have Lyme disease? Yes. Getting the word out to movie fans and soap opera devotees can help shape and inform public opinion. Martin Scorsese produced Lymelife , starring Alec Baldwin, Cynthia Nixon and Timothy Hutton. The film will be available on Netflix, and is scheduled to be released on April 17, 2009. The story takes place in the NE in the 1970s:

15-year old Scott Bartlett's family life is turned upside-down after an outbreak of Lyme disease hits the community spreading illness and paranoia. Scott's parents -- a workaholic father, Mickey, and an overprotective mother, Brenda -- are on the verge of a divorce as his older brother Jim is about to ship off for war. Complicating matters, Scott has fallen in love with his next door neighbor, Adrianna...

Stories are powerful conductors of information. They portray genuine emotion and can move people to action. Of course, the appearance of Lyme on TV and in the movies may give some false information as well. We can almost count on a certain degree of misinformation being transmitted through fiction regarding Lyme disease, which is confusing enough to understand in real life. I had to laugh at the recap notes for TV's long-running soap, The Young and the Restless, as Kay was suspected of having Lyme disease on Wednesday and received a diagnosis on Thursday. This is particularly funny since I think of soaps as a medium where characters can remain pregnant for at least a year.

What are your thoughts on these stories? Are they doing a service, or adding to the misinformation about Lyme disease? Tell us what you think.
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New Lyme book by PJ Langhoff

“The scientific community is not listening to patients, and these books offer a chance for our voices to be heard,” says PJ Langhoff. The latest book was written after studying thousands of documents, mostly accessible via the Internet — an information resource often used by patients when seeking answers for health issues, for which they are heavily criticized. “We are not a hysterical bunch inventing illness by way of electronics, we seek answers. The idea that Lyme disease is not serious or chronic, that it is easily curable in all patients after antibiotics, or even that current diagnostics are accurate, is ridiculous,” says the author. “The book illustrates that current research easily refutes those holding a restrictive, minimalist viewpoint, and any guidelines that may help to promote that mindset.”

Read the full press release here.
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Lyme epidemic causing healthcare crisis



CHARLOTTE, N.C., Feb 24, 2009 (BUSINESS WIRE) -- An ongoing battle over the diagnosis and treatment of Lyme disease, a tick-borne illness, is pitting doctors against doctors, prompting health insurance companies to deny medical claims at an alarming rate, and leaving suffering patients stuck in the middle.

Read the full press release here.
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Legislative Forum Announcement

This Lyme legislative forum will provide education about the various ways Congress works and an opportunity to share your ideas and concerns. Meet other leaders from across the country and create a national dialogue on Lyme and tick-borne disease. This is a forum and everyone is encouraged to participate. This event is for anyone who wants to represent their Lyme community. What you will learn about the legislative process will be useful in your state activities, as well as our national efforts.

Please respond to the survey with YOUR ideas. We want to include everyone’s concerns and suggestions in the discussion. Also, please respond as quickly as you can. We can keep the preferential Holiday Inn rate only until the 27th of February.


Date: March 28, 2009

Keynote: Congressman Frank Wolf

A ONE DAY SEMINAR FOR LYME LEADERS: PLANNING AN EFFECTIVE LEGISLATIVE PROGRAM FOR LYME & TICK-BORNE DISEASE RELIEF

Sessions include:

- Experienced former Congressional aides and Lyme Leaders

- Understanding the Legislative Process and the Need for Hearings

- Appropriate Goals and Objectives in the U.S. Congress

- Substantive Issues in Lyme Legislation and Congressional Solutions

- IDSA Guidelines Review Panel Input Process & April 27th Hearing

- Presenting a United Front Sessions will be facilitated by20faculty of the

George Mason University, Institute for Conflict Analysis and Resolution

(ICAR)


Your ideas on what we need from Congress and how to achieve it are welcome. Submit your suggestions at
http://www.NatCapLyme.org/LegForum
or call NatCapLyme at (703) 821-8833; (301) 980-6788 or (703) 435-2080.

A block of rooms has been reserved at the Holiday Inn, Ballston

http://www.hiarlington.com/

4610 N Fairfax Drive, Arlington VA 22203, 1-800-HOLIDAY (1-800-465-4329)

Reserve by February 27 for the NatCapLyme Special Promotional Rate of $85.
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Lyme review panel members stir concern

At last, the IDSA (Infectious Diseases Society of America) has selected members to review the guidelines for the treatment of Lyme disease. Lyme awareness groups are alarmed at the placement of Carol J. Baker, MD, as the committee chairperson. Notably, there are also no ILADS (International Lyme and Associated Diseases Society) members on the review panel.

Lynn Shepler, MDJD, shares her concerns:

CAROL J. BAKER, MD, head of the new committee formed as a result of AG Richard Blumenthal's investigation, is Past-President of IDSA, and lists her chief interests as "VACCINOLOGY," "CLINICAL TRIALS," AND "VACCINE POLICY." She has published "more than 100 articles on vaccine research."

Dr. Baker is also a member of the Advisory Committee for Immunization Practices of the Centers for Disease Control and Prevention.

Was Dr. Baker a member of the Advisory Committee for Immunization Practices of the CDC at any point when past or future Lyme disease vaccines have been discussed --- formally, or informally?

The team she is part of at "The Center of Vaccine Awareness and Research" in Houston, Texas describes itself as "dedicated to improving the health of children from infancy through adulthood by promoting vaccinations and educating families and health care providers on all available vaccines."

Uh, does this include the Lyme vaccine(s)? Dr. Wormser's principal conflict of interest was that he was consulting to pharmaceutical companies on Lyme disease vaccines --- something he knew about and refused to disclose to IDSA administrators.

Dr. Wormser was head of each of the two IDSA guidelines on Lyme disease that have been issued. In my personal opinion, both versions of the IDSA guidelines have been biased in favor of vaccine commercialization.

By my reasoning, the need to deny the existence of persistent infection is part of the drive to commercialize Lyme disease vaccines that are not otherwise ready for market. Persistent infection is an important scientific problem that needs to be solved before any vaccine trials can be done. Instead, Wormser et al simply lie, and maintain the patients are sick with "something else."

So, instead of Dr. Wormser, we have a prominent vaccinologist, and former President of IDSA as the head of the committee? On the face of it, I find this very alarming!

(Please post this information to any Lyme disease discussion board to educate patients about the possible biases on the part of members of this new committee).

Following is a list of Lyme review panel members:

Carol J. Baker, MD,
Chair Baylor College of Medicine
Houston, TX

William A. Charini, MD
Peabody, MA

Paul H. Duray, MD (retired)
Westwood, MA

Paul M. Lantos, MD
Duke University Medical Center
Durham, NC

Gerald Medoff, MD
Washington University School of Medicine
St. Louis, MO

Manuel H. Moro, DVM, MPH, PhD
National Institutes of Health
Bethesda, MD

David M. Mushatt, MD, MPH & TM
Tulane University School of Medicine
New Orleans, LA

Jeffrey Parsonnet, MD
Dartmouth‐Hitchcock Medical Center
Lebanon, NH

Cmdr. John W. Sanders, MD
U.S. Naval Medical Research Center Detachment, Peru
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Let's Get the Lyme movie on Oprah

Dr. Mehmet Oz of the Oprah & Friends Network aired a 45-minute interview with director Andy Abrahams Wilson and medical correspondent Kathy Fowler on his nationally syndicated talk radio show November 26, 2008. Dr. Oz, a renowned surgeon and health expert, said "I was so moved!" and called Under Our Skin "a beautiful film...a whole different way of thinking about reporting on health."

Moved as he was, Dr. Oz expressed interest in trying to get Under Our Skin on Oprah, where he is a regular guest contributor. But first, in order to gauge viewer interest, Dr. Oz and Oprah need to hear from you. Here's what you can do -- and please remember to praise Dr. Oz's coverage of the issue and the film.

So now we know that we are on Oprah's radar... that is a big deal. But so far, there has not been an impressive enough response to Dr. Oz's show.

We need more. Get your friends, family, co-workers, doctors, nurses, anyone and everyone you know to write Dr. Oz. There are Lyme groups around the world - everyone needs to be passing this info along and getting everyone to email in. Can everyone post it everywhere.. email in. Ask friends and other people who know what you are going through to contact Dr. Oz.

Getting on Oprah would be a very huge deal.

Here is the info again to Email Dr. Oz.

Also, you can leave comments on Oprah's community forum.

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Dr. Oz interviews Under Our Skin filmmaker

We received a flood of comments about Oprah's interest in Lyme disease. She's listening! And now there's someone you'll want to listen to as well.

You can hear Oprah's Dr. Oz this week on XM Radio as he interviews filmmaker Andy Abrahams Wilson, whose Lyme documentary Under Our Skin is helping turn the tide of attention toward this controversial and misunderstood disease.

The show airs Wednesday, November 26th at 1 a.m. 7 a.m. and 6 pm EST. Oprah and Friends producers say people who don’t subscribe to the satellite radio can also listen by going to http://www.oprah.com/radio and clicking on the “Free 30 Day XM Radio Trial.” Register and you can listen online.

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Lyme documentary filmmaker's speech

When filmmaker Andy Abrahams Wilson began making his Lyme documentary, Under Our Skin, he was driven by compassion and curiosity, two potent characteristics that led him to uncover the stories of many people who were struggling in silence. By winning the Vision of Hope Award from the prestigious Turn the Corner Foundation, Andy hopes the film will lend its weight to the collective tipping point needed to bring Lyme disease to the forefront of public awareness.

"My being was changed irrevocably by what I witnessed: suffering, injustice, and deafening silence. And above all: the courage of so many to persevere, to fight for life amidst the eclipse of light: the pain, fear, loneliness, and the mantra ‘It’s all in your head,’ " he says.

Read the full text of Andy Abrahams Wilson's acceptance speech for his Vision of Hope award on the Under Our Skin blog.
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Under Our Skin filmmaker honored



Congratulations to filmmaker Andy Abrahams Wilson, who is being honored this week at a Turn the Corner Foundation event in New York City. Andy's heartwrenching and eye-opening documentary film, Under Our Skin, exposes the medical establishment's frequent dismissal of people suffering with Lyme.

From the press release: Turn the Corner will present the Vision of Hope Award to Andy Abrahams Wilson, Producer/Director of Under Our Skin, a film that investigates the shocking human, medical and political dimensions of Lyme disease, for his efforts to raise awareness for chronic Lyme disease. Leading Lyme-literate physician, Bernard D. Raxlen, MD, will receive the Humanitarian Award for his dedication to treating patients with tick-borne diseases, including Lyme.

"TTC is doing important work for the Lyme community, and has been a great force behind Under Our Skin," said Andy Abrahams Wilson. "Thanks to our joint efforts, the mainstream medical establishment can no longer ignore or marginalize chronic Lyme disease and its sufferers."


Andy is a featured expert in the LDRD's interview series.
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Lyme patients take the fight to DC

A bill that would direct 20 million dollars toward Lyme disease research is being held up by committee. Lyme patients showed up by the dozens this week on Capitol Hill to show Congress that increasingly, people are exposed to serious tick-borne diseases and are in dire need of more doctors who are educated about Lyme disease treatment.

Joe LeBlanc, Director of the Central Virginia Chapter of the National Capital Lyme & Tick-Borne Disease Association emailed an optimistic note yesterday from the Congressional Briefing. Joe reports that there was "standing room only" at the meeting, and despite the focus on the financial crisis, the briefing went very well. Now, we have to keep on top of our congressional representatives to keep up the momentum.

A big thank you to Joe and everyone who traveled to the Hill to speak up on all our behalf!


Comments

ABC Great Lyme Debate - Part 3

Part 3 of ABC's Great Lyme Debate.
Families and whole neighborhoods have contracted this debilitating disease.
Watch how experts gather ticks on a collecting expedition.

Please watch and share this educational video, and drop a note of thanks to journalist Kathy Fowler at ABC, for calling attention to Lyme disease. Our comments matter.
Comments

ABC covers Lyme debate - part 2


Watch the video


* Lyme disease tests are often misleading
* Lyme symptoms can mimic hundreds of other conditions
* Many Lyme patients do not receive a correct diagnosis until the Lyme bacteria has had a chance to replicate throughout their body


Does your doctor know how to test for Lyme? Is he or she Lyme aware? ILADS physician Dr. Raphael Stricker told us in an exclusive LDRD interview that the conventional Lyme tests have a "coin-toss sensitivity," meaning that you could get the same results if you just flip a coin.

Do you have to go outside IDSA recommendations to get the answers you need? The woman in this news story considers herself virtually cured of Lyme, after two and a half years of antibiotics therapy.

Are some conventional doctors beginning to understand that these tests, developed over 30 years ago, are outdated and inadequate?

Watch this brief news story on the great Lyme debate. Journalist Kathy Fowler continues the 3-part investigation. Leave your comments here and also send drop her a note at lyme@wjla.com Please share this link with others you know are concerned about Lyme disease symptoms.
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ABC covers the Lyme Debate


* Is Lyme disease an unrecognized epidemic?
* If left untreated, will it become chronic?
* Can Lyme be treated with long-term antibiotics?



Or do you believe, as IDSA docs do, that the Lyme epidemic is nonexistent? Is chronic Lyme disease all in the patients' head? Are long-term antibiotics dangerous?

These questions simmer at the heart of the great Lyme debate, which is played out every day in decisions made by IDSA doctors on one hand, and ILADS physicians on the other. The IDSA is currently reviewing its treatment guidelines.

Who's correct? Where do you stand? Anyone who has ever been doubted by their Infectious Disease doctor, and all of us whose lives are affected by Lyme will want to watch this three part story.

ABC News covers the Lyme controversy. Take a look. If you appreciate this report, please take a moment to call or email ABC and let them know. Our opinions as viewers matter to them.

Comments

NY Times article on Lyme disease

There's a lot to admire about Jane Brody's recent NY Times article on Lyme disease, A Threat in a Grassy Stroll. It will inform some who haven't ever heard of the disease (yes, they're out there), or people who had heard of it but know squat about it, such as my Aunt Louise, who called to offer her condolences after I was diagnosed. ("Unfortunately, nothing can be done, dear. Eating rosemary is supposed to help.") The article may even throw a wrench in the common nonsense that Lyme is "hard to get, and easy to cure," a myth that originally began where? With an article in the NY Times, by Gina Kolata.

Perhaps what I appreciate most about Brody's piece is that alongside the statistics and experts she quotes, she offers her own personal observations. After presenting the simplified version of the IDSA's and ILADS conflicting views on treatment, she says, "Although I cannot state with authority which side is correct, I have encountered enough previously healthy people who have suffered for months or years after initial treatment to suggest that there is often more to this disease than 'official' diagnostic and treatment guidelines suggest." The article's meta-text is twofold. First: Don't believe everything you read. And second: Don't discount your own observations.

My problems with the article are fairly nit-picky, and my bias in support of ILADS makes me frustrated to see this global organization of highly-educated physicians and researchers referred to as "a nonprofit medical group," but okay, they are a nonprofit medical group. I also think it's a little weak on Brody's part to suggest the ISDA simply agreed to revise its Lyme treatment guidelines, since in fact the IDSA faced criminal charges of antitrust if they refused to do so. Furthermore, Eva Sapi, PhD, director of Lyme disease research at UNH, says that even 40% DEET wasn't strong enough to repel ticks when she and her students ventured out on their tick-collecting walks through Fairfield County, CT. She recommends permethrin-saturated clothing instead. And Dr. Sapi says that ticks have been known to transmit bacteria after only one or two hours -- not the 24 hours that Brody says the vile little critters need.

Some of these transgressions, even if they're small, can spread damaging half-truths to the overall message about Lyme. The truth is, it's a serious disease. Easy to get, and hard to cure. The lucky ones are cured following the simplistic guidelines of the IDSA. But the numbers of sick people who don't get better on that protocol tell a different story. In all, I have to say it's exciting to see good reporters talking about Lyme, bringing their own observations into the mix, and not simply mouthing the words of the CDC.

Listen to the experts themselves, and use your own good judgment.
Comments

20,000 cases? Sorry, you're wrong

Dear ABC Good Morning America,

Thank you for running the story on Lyme disease. However, I would like to challenge your reporters on one point. The number of new cases of Lyme per year is said by Lyme specialists to be ten to forty times higher than the 20,000 quoted by the CDC, and the number used in your report. Gross misdiagnosis and under-diagnosis is due in part to the notoriously inaccurate tests for Lyme that are currently in use by most infectious disease doctors in the US. These tests are the Western Blot and the ELISA.

The Lyme compound consists of the spirochetal Borrelia bacteria, plus any number of mycoplasma parasites and other pathogens. This compound is a particularly stealth bacteria that is able to evade the body's immune system, therefore protecting itself from the attack of antibiotics by drawing up a shield around itself, and hiding in various cyst forms throughout the patient's body and brain. The common tests for Lyme do not account for the sophisticated nature of this bacteria, according to researchers at the University of New Haven, Dr. Alan MacDonald and Dr. Eva Sapi.

Another reason for the misdiagnosis is the fact that no two Lyme patients present symptoms in the same way. In addition, it is not known how long the bacteria may lie dormant.

The irksome fact that the process of writing the IDSA treatment guidelines have been found to be in violation of the law has created quite a stir with patients of this devastating disease. The most profound problem is the existence of two standards of care for Lyme, which directly affects patients' health insurance and coverage of long-term antibiotics. ILADs physicians have told me that there are thousands of scientific models proving that Lyme can go chronic if undertreated or left untreated. The IDSA has ignored that scientific evidence. This is the heart of the Lyme debate.
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Lyme story airs!

According to Brooke Landau, Lyme activist and TV news reporter, television stations listen and respond when they are deluged with requests from viewers to air stories about a specific topic. Viewers are their bread and butter. Please take the time to comment on the ABC website to let them know you appreciate the story they aired this morning about the documentary film, Under Our Skin. Here's my comment to them:

Thank you, thank you for bringing this growing epidemic to light. However, as many have already noted, the majority of people suffering with Lyme disease never saw a tick bite, and never had the bull's eye rash. In addition, the tests for Lyme have what one physician refers to as "coin toss sensitivity," meaning that if you toss a coin, you get results that are just about as accurate as using the ELISA or the Western Blot for testing positive. According to ILADs physicians I have interviewed for the Lyme Disease Research Database, the CDC has a long history of ignoring scientific evidence for the existence of chronic Lyme disease. Thanks to CT Attorney General Richard Blumenthal, the IDSA is now being forced to review its Lyme disease treatment guidelines. People who are suffering with Lyme due to misdiagnosis, under-diagnosis, and simple ignorance have long been forced to become their own health advocates, often at a time in their lives when they are extremely sick. I applaud you for airing this segment on the Lyme controversy, yet I am disappointed to see that your reporters did not bother to investigate the accuracy of the numbers of new cases of Lyme reported each year. As someone else commented, that 20,000 quote is hideously underestimated. Next time, I hope you have the courage to quote numbers that are closer to the actual truth.

In the Lyme documentary Under Our Skin, filmmaker Andy Abrahams Wilson (Open Eye Pictures) exposes the cruel dismissal that the medical establishment frequently gives people who are sick and suffering with Lyme. The film opened in April at the Tribeca Film Festival in NYC. Andy is featured in the LDRD's interview series.
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Good Morning America, where's the Lyme story?

Where's the story? I know I wasn't the only one who was sorely disappointed to see that Good Morning America did not air the Lyme segment. Let's give them the benefit of the doubt, and assume that due to a programming snafu, they rescheduled. Please use this link to the ABC News contact form. Let them know that you - and your family and friends - all want to see it.
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Lyme is making headline news

A book and a film. How many times have you read a book, or seen a film, that shook your world view, opened your eyes, that made you take a second look at something you thought you understood. As a smart, sensitive person you've probably had that experience all throughout your life. Now is the time to pick up (and share) a phenomenal new book and go see a mind-expanding documentary film. Both deal head-on with the controversy surrounding the growing epidemic of Lyme disease. Be sure to watch the coverage on Good Morning America, ABC News, on Thursday July 3. It's important to let them know you're glad to see a story about Lyme on the mainstream news! Post your responses to their discussion on their website: http://abcnews.go.com/gma

Cure Unknown: Inside the Lyme Epidemic, is science journalist Pamela Weintraub's new book about her family's innocent decent into the living hell of Lyme, their tribulations and subsequent conquest over this grueling disease. According to Kaja Perina, editor in chief of Psychology Today, "This is an important and unforgettable book, destined to make a lasting contribution to the field of investigative health journalism.”

In the Lyme documentary Under Our Skin, filmmaker Andy Abrahams Wilson (Open Eye Pictures) exposes the cruel dismissal that the medical establishment frequently gives people who are sick and suffering with Lyme. The film opened in April at the Tribeca Film Festival in NYC. Andy is featured in the LDRD's interview series.
Comments

Lyme disease controversy on Good Morning America, ABC TV

Lyme disease controversy to be discussed on Thursday morning July 3, Good Morning America , ABC TV.

PLEASE DISTRIBUTE:

FROM DR. BRANSFIELD

Hi,
The movie Under Our Skin and the book Cure Unknown have awoken interest in the Lyme disease debate. Good Morning America will be showing a news story on the Lyme disease controversy Thursday morning between 7:30 and 8:00 AM. This came up on short notice and I was filmed late
yesterday. Someone from the opposing IDSA school of thought was also filmed in the Washington area.

Best,
Bob

Robert C Bransfield, MD, DFAPA, PC
225 State Route 35
Red Bank , NJ 07701
Phone 732-741-3263
Fax 732-741-5308
Email bransfield@comcast. net
Website www.MentalHealthand Illness.com
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SELF writer describes Lyme nightmare

In the June 2008 issue, SELF magazine contributing editor Tula Karras vividly tells her story of misery and confusion before finally receiving a correct diagnosis of Lyme disease after suffering eight years of symptoms. Somehow she pulled through, keeping her obviously brilliant writing skills intact. Blessings to Tula! And kudos to SELF for printing this honest piece of writing about the challenge of Lyme.

Learn more about the benefits of becoming a member.
Comments

Breaking News: IDSA guidelines under scrutiny

"Serious flaws in the IDSA's process for writing its 2006 Lyme disease guidelines" have been revealed during an antitrust investigation conducted by Connecticut Attorney General Richard Blumenthal. Reassessment of the guidelines must now take place with an outside arbiter and a "conflicts-free panel." The subsequent hearing is also required to be broadcast live on the IDSA's website.

Turns out it's not nice -- or particularly legal -- to stack the panel with people who stand to make loads of cash from drug and insurance companies, Lyme disease diagnostic tests and patents. Stay tuned for developments. It's bound to get wild in the coming weeks and months, especially with IDSA-loving Dr. Gary Wormser shrugging off the investigation and calling it "absurd." Conflicts? What conflicts?

This significant turn of events could soon impact your ability to get proper treatment. Meantime, we'll continue to interview physicians who specialize in Lyme and who can give us the inside scoop and help us understand the ramifications of the reassessment.

Please become a member to hear upcoming interviews with Lyme experts on this issue.

Read the IDSA's press release.
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Hunting deer won't eradicate Lyme

Each Tuesday and Thursday through the end of February, the sound of sharpshooters hunting white-tailed deer will echo through the neighborhoods of suburban New Jersey. The deer overpopulate, eat the trees, and pose a traffic hazard. They also spread Lyme disease.

Intelligent management of the deer population is necessary for many reasons. However, it isn't prudent to assume that by killing the deer we can eradicate the spread of Lyme. Preventing the spread of Lyme disease, which is believed to be caused by the bite of a Ixode tick, is more complex than getting rid of the deer. While it's true that deer make excellent hosts, roaming and foraging in the brush where ticks are likely to be waiting for a ride, it is also a fact that even if the deer population was to altogether disappear, ticks would continue to survive simply by looking elsewhere for their immediate needs.

Birds, mice, and other rodents make a perfectly acceptable meal ticket for the lowly tick, who isn't picky. A tiny tick can only move within a limited space: about a nine foot range. Ticks generally occupy a space from the ground up to about three feet, clinging to grasses and brush, which is why it is important to wear protective clothing and use caution when you walk or hike through forested areas. They are intent on finding a host who can give them what they need to survive, and any convenient warm-blooded animal who ventures close enough to offer a ride and a hot supper will do. It doesn't need to be a deer.
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DOH wants your Lyme story

Want to tell the Pennsylvania Department of Health about your personal experiences with Lyme disease treatment? The Lyme Disease Task Force wants to hear from you. Linda Wales, co-leader of Lyme patient rights group NYPenn Lyme Disease Support Group, posted this letter to the editor of the Star-Gazette.com this morning:

Task force seeks input on Lyme disease
January 4, 2008

It is time for Lyme disease patients to be heard.

The Pennsylvania Department of Health established a Commonwealth Lyme Disease Task Force in 2007 to examine issues and draft recommendations regarding Lyme disease. It was decided feedback from Lyme disease patients is needed. NYPenn Lyme Disease Support Group received notification this task force will host a public hearing from 1 to 4 p.m. Tuesday at the Keystone Building, Hearing Room 1, on Forster Street and Commonwealth Avenue in Harrisburg, Pa. Everyone is welcome; there will be question-and- answer sessions.

They recognize how important it is to receive a wide range of feedback and realize it would be impossible for many Lyme sufferers to attend. Therefore, letters explaining experiences with tick-borne diseases will be accepted through Jan. 31.

Please send to Dr. James Rankin, Pennsylvania Department of Health, Room 933, 7th and Forster Street, Harrisburg, PA 17120 or fax to (717) 772-6975.

Questions may be directed to Dr. James Rankin by telephone at (717) 787-3350.

Lyme disease is quickly becoming a serious health problem in Pennsylvania (and nationally). If you choose to remain silent or think you need to do nothing because someone else will, the Department of Health could believe it is no big deal and may drop the issue.

Linda Wales
Co-leader, NYPenn LDSG
Millerton, PA
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Lifelyme conference in January

We would like to share the following with you, regarding an upcoming conference for doctors and others dealing with Lyme and other chronic illnesses.

Dear Friend,

Lifelyme is pleased to announce we are jointly sponsoring a one day Lyme conference at the Vinoy Resort in St. Petersburg, Florida on January 19th, 2008. Enclosed is a copy of our brochure. If you would like us to send you additional brochures please email or call me.

The title of our conference is:
"Similarities and Paradoxes in Chronic Illnesses".

This conference is bringing together some of the top Lyme and CFIDS doctors to share the latest information on these diseases. Registration can be made on the Internet at the University of South Florida website set up specifically for this purpose.

Go to: www.cme.hsc.usf.edu/lyme

This is a medical conference jointly sponsored by University of South Florida Medical College, Morton Plant Mease and The Lanford Foundation - Lifelyme, Inc. CME - Continuing Medical Education credits are being offered for health care practitioners. Please share this information with your physicians.

Registration fee: $150.00 Les Roberts Author of the Poison Plum will be selling/signing books at the event!
Fee includes a Buffet Lunch at the Renaissance Vinoy Resort


Questions or Additional Information call:
The Office of Continuing Professional Development
(813-974-4296) or (800-852-5362)
or email: jahartfi@health.usf.edu

Looking forward to seeing you at the conference.

Warmest Regards,



Sandi Lanford, Founder/President
The Lanford Foundation - Lifelyme, Inc.
(850) 906-9108
www.lifelyme.org
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Lyme research ignored by mainstream medical community

I recently interviewed Dr. Andrew Wright near Manchester, in the UK, who brought up an interesting fact about Lyme disease and the way it is contracted and spread. He cited a study that was done in New Guinea that found a majority of the population, 70%, were infected with Lyme disease. Since there are no ticks in the area, Dr. Wright and other medical practitioners and researchers wonder how these people are becoming infected.
Read more here.
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Investigation into the October IDSA rulings

Connecticut Attorney General Richard Blumenthal, in an unprecedented historical move, has begun an investigation into the recent IDSA rulings regarding treatment for Lyme.

Click here to read the press release, which includes the President of the Lyme Disease Association (LDA) Pat Smith's statement of support. Let's all make sure Mr. Blumenthal knows how thankful we are that he's doing the right thing and tell him he's got our support.

Write to him at: attorney.general@po.state.ct.us
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O, Thank You!

Okay kids, the thing we really really need is publicity, right? Acknowledgement and assistance from the medical profession and others. Well, here's Oprah to the rescue. It's a genuine pleasure to see the first ever national ad that calls attention to this national endemic.

Please check out the powerful ad from the Turn the Corner Foundation in the November issue of Oprah magazine, and then take just a moment to e-mail a thank you note for running it. Oprah has the potential to help break this story wide open. Isn't it about time?

Here is the link to e-mail your thanks O magazine for running the ad:

http://www2.oprah.com/omagazine/omag_wehear.jhtml
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PBS interview with Kathleen Zabawa

Here's something I know you're going to want to see. Watch this PBS interview presented in Houston last week (Nov 3 2006). It's excellent. Kathleen Zabawa has Lyme and really tells it like it is. She's a brave patient and an advocate for us all. One of her most important points is that Lyme needs publicity. Did you know that there are less than 100 doctors in the U.S. who are even Lyme literate?

Watch it now and then send it to your family members and friends; it will help them understand you and all the weird symptoms. It's fantastic. I'm off to send a thank you note to this woman and the host of the show. There is hope for understanding and hope for healing! We've just got a lot of work to do.

The only thing that saddens me is that it doesn't look like Kathleen has tried Samento or Cumanda, and I've interviewed Lymies who are symptom-free and healthy again because of these powerful, effective alternatives to antibiotics. I wish I could snap my fingers and get everyone with Lyme to try them. But until their doctors recommend them, people are often reluctant to try anything new. Does that make sense, though, when the doctor knows less about Lyme than you do?

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300 Protest IDSA guidelines

Among the protest signs held up by attendees was a little boy's that read, "All I Want For Christmas is My Medicine."

Reporter Liz Anderson of the Journal News in Westchester, PA, covered the rally which took place on November 30:

Protesters cheered Dr. Joseph Burrascano, vice president of the International Lyme and Associated Diseases Society, which supports the use of long-term antibiotics in some cases and has called on the IDSA to retract the recommendations.

"If they weren't so seriously flawed, I would say it was a joke," he said of the guidelines. He urged those at the rally to fight back "by uncovering the truth."

Read the entire article here.
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protest the IDSA guidelines

Read this comprehensive article published in Danbury CT that cuts to the heart of the matter:

Nov 28 2006 6:39 AM
Lyme disease activists to protest
By Robert Miller

THE NEWS-TIMES

Area Lyme disease activists, dismayed by recently released treatment guidelines for the illness, will go public with their protest Thursday, rallying at Westchester Medical Center/New York Medical College in Valhalla, N.Y., where the lead author of the guidelines works.

"They're highly restrictive,'' said Dr. Steven Phillips, a Ridgefield physician who is the former president of the International Lyme and Associated Diseases Society. "I just cannot understand why they've chosen to ignore all the data on this.''

"They were worse than we expected,'' said Maggie Shaw of the Newtown Lyme Disease Task Force.

"In a word, I think they're a disgrace,'' said Dr. Raphael Stricker of San Francisco, who is the current president of ILADS. "They're not relying on best science. They're relying on their opinion.''

The guidelines are so controversial that Attorney General Richard Blumenthal has intervened. His office is now investigating whether the group that wrote the guidelines, the Infectious Diseases Society of America, is a monopolistic organization trying to shape treatment of the tick-borne disease without allowing other treatment options to emerge.

"It's a medical issue but also a patient issue,'' Blumenthal said. "Their guidelines limit very severely the types of diagnosis and treatment available to patients. In a way, that's anti-competitive.''

The national guidelines issued by the Infectious Diseases Society of America recommend that doctors give patients with Lyme disease 10 to 28 days of oral antibiotics to treat the disease, with another month allowed for persistent symptoms.

But the guidelines -- now posted on the Web site of the Centers for Disease Control and Prevention -- deny the existence of chronic Lyme disease, saying there's no medical evidence that the bacteria that causes Lyme survives antibiotic treatment.

It also emphasizes using either the characteristic bull's-eye rash or blood tests to help correctly diagnose the disease -- two methods Lyme activists say can lead to Lyme cases being missed.

Diana Olson, spokeswoman for the infectious diseases society, said the 14 doctors who worked on the guidelines -- led by Dr. Gary Wormser, an infectious disease specialist at Westchester Medical Center/New York Medical College -- studied more than 400 published medical reports on Lyme disease before coming to their conclusions.

"This is the best science has to offer,'' she said.

Olson said the society could not take into account things like patients' anecdotal accounts of their Lyme disease treatment in writing the guidelines. Nor, she said, did it concern itself with whether insurance companies would pay for treatment outside those guidelines.

She also said that guidelines are just that, and that patients and doctors are free to find different treatments that work best for them.

She also said the society is cooperating fully with Blumenthal's office.

"In our experience, we've never heard of this kind of investigation,'' she said. "But we stand behind our methods and our recommendations.''

But Lyme activists and doctors who support a more liberal approach to treating the disease said the new guidelines are highly restrictive, not allowing doctors any latitude in treatment.

Perhaps the most contentious point is whether chronic Lyme disease even exists.

Many Lyme patients and their doctors contend the standard treatment for Lyme disease sometimes fails, or never gets administered to begin with.

When that happens, they say, the bacterial spirochete that causes the disease can re-emerge in the body, causing a bewildering array of symptoms -- including arthritis, chronic fatigue, heart problems, memory loss, depression, and neurological disorders including loss of sight and hearing.

To treat these symptoms -- and those of several other tick-borne illnesses, which can overlap -- these doctors recommend several months or even years of antibiotics, often using a mix of drugs.

The infectious disease society, however, said that these symptoms are "nonspecific'' and associated with many other illnesses, not Lyme infection. They also caution that there are medical problems -- including the development of drug resistance -- that should lead patients to avoid long-term antibiotic care whenever possible.

But Phillips of Ridgefield and Stricker of San Francisco said this approach ignores the hundreds of studies that now show the Lyme bacteria can bury itself in muscle tissue, lie dormant, then re-emerge.

"There (have) been 18,000 papers published on Lyme disease,'' Stricker said. "So saying you're looking at 400 means you've only looked at 5 percent of the research."

"The evidence just continues to grow and grow on this,'' Phillips said. "To ignore a whole section of this research, as if it doesn't exist, raises questions for me.''

Because of the prestige the infectious disease society carries, Lyme activists say insurance companies will now be even more adamant about refusing coverage beyond 28 days of antibiotics -- something, they say, that has already begun.

They also say the new guidelines will stifle new treatments, because doctors will fear they'll be disciplined if they step beyond the guidelines.

"This isn't theoretical,'' Blumenthal said. "It will come down to a matter of dollars and cents.''

Contact Robert Miller
at bmillernewstimes.com
or (203) 731-3345.
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