Thursday, May 17, 2012

ABCs 20/20 show to air segment on Lyme. Friday, May 18, 2012


**PLEASE NOTE: ARTICLE SAYS SHOW WILL BE ON MAY 16TH, HOWEVER I BELIEVE THIS IS A TYPO SINCE IT IS SUPPOSED TO AIR FRIDAY NIGHT WHICH IS MAY 18TH**

TOUCHED BY LYME: 
Teen with Lyme will be featured on ABC’s 20/20 show
16th May 2012
 
Her YouTube videos caught the attention of ABC news.

Elaina P. is a New Hampshire high school student who has been blogging about her experience with Lyme disease since 2008.

Just a couple of weeks ago, her mom posted a couple of Elaina’s videos on YouTube, which were noticed by some ABC news producers working on a segment about teens with hard to explain illnesses. One thing led to another, and here’s how Elaina explained it in her blog:

“For the past two days I had a national team on my property and in my life to get to know me. They saw my room and watched as I took medicines, wrapped my IV up, prepared for a shower, wrote a new blog entry, visited my miniature horse, ate ice cream, and performed regular activities. Nothing about the experience was regular however. It was surreal having strangers going to and from and putting a microphone on you and following you around. I’m used to just doing my thing pretty quietly but there was nothing quiet about the new visitors.”
The show will air this Friday, 10 pm, on ABC News.

Click here to see Elaina’s blog and view her videos.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
http://lymedisease.org/news/touchedbylyme/lyme-teen-2020.html
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Friday, May 11, 2012

New Lab Testing & Awareness to Attack Lyme in California


NEW LAB TESTING AND AWARENESS TO ATTACK LYME IN CALIFORNIA


A new Borrelia Culture and awareness may increase Lyme Disease literacy in California just in time.
“I’m testing three patients for it right now,” says Dr. Todd Maderis, a leading naturopath running the Marin Natural Medicine Clinic in a county with the highest number of Lyme disease outbreaks in California. He has just returned from a national conference in San Diego on educating medical experts about the early recognition of Lyme disease cases which are too often undiagnosed or misdiagnosed as having other ailments.

“Lyme has similar symptoms as chronic fatigue, depression, fibromyalgia, MS and ALS, and unless you run a complete lab panel on the bacteria, you won’t be able to see all of the stains and diagnose the disease properly,” explains Maderis, adding that Advance Lab in Pennsylvania has just released a new Borrelia Blood Culture for clinical use in 49 states which will advance better detection. While not available yet in New York, applications have been filed and are pending.

While the western blot has been the preferred serologic test, researchers have found no single blood test is reliable enough to be used alone and physicians are now urged to evaluate all of the markers to be certain of the diagnosis. Lyme combined with co-infections is known as “the great imitator” and about half of the people diagnosed remember having a tick bite.

Maderis says most holistic practitioners have been careful about testing all strains, but this isn’t true of all doctors. “The gold standard is routinely running a complete line panel through IGeneX, inc. Lab in Palo Alto, California which looks at all strains of the Borrelia bacteria plus co-infections, but your local general practitioner down the street won’t know about it.”

That’s a big problem for victims. Thanks to global warming and more cases finally being reported, Lyme disease is the fastest-growing infections disease in the country, doubling since 1991 to over 200,000 cases per year, making it greater than AIDS and the West Nile virus combined. As a result, California health care professionals are boning up on how to better diagnose what can be a debilitating and deadly infection.
While the state doesn’t keep records on outbreaks, Marin has proven fertile ground for the deer tick that carries the illness and many who suffer from the effects such as chills, headaches, brain lesions and brain fog, weakness, joint swelling and paralysis can be in grave danger if left untreated.

One such victim was Bay Area author Amy Tan, who ended up temporarily in a wheelchair since none of doctors considered she might have Lyme when she complained for years about the symptoms. Tan spoke of her experience in the documentary, Under our Skin, directed by Marin filmmaker Andy Abrahams Wilson of Open Eye Pictures.

“Amy’s story is sadly typical,” said Wilson. “It’s a twofold failure of the medical community: they don’t know the best ways to test for Lyme, and even when they conclude it is Lyme, they can’t agree on how to treat it. ” Compounding that failure is a refusal of insurance companies to pay for treatment since it can result in a long-term illness. Wilson’s own sister was a victim and he suspects many of his neighbors have had the disease, too, since the region is a deer tick hotbed.
Both the film and new books such as Out of the Woods by Katina Makris, a Lyme survivor, strongly emphasize that awareness is key on the part of both health care experts and the public in avoiding, diagnosing and treating the illness in its earliest stages.

In terms of treatment guidelines, Maderis and other Lyme literate doctors look to the International Lyme and Associated Disease Society (ILADS) which offers an exhaustive list of symptoms to check off in patients. Among the weaponry is a combination of antibiotics while sorting out co-infections that often exist and complicate healing. Also administered are nutritional supplements and a yeast-controlled diet. All of these of course must be continually monitored by a health professional.

In the meantime, the public must focus on avoidance. That’s why May isLyme disease awareness month, aptly timed since spring and summer are the at-risk seasons, and residents are being warned they don’t need to venture deeply into the woods to be exposed. One researcher at a California park found many nymphal ticks lurking under a wooden picnic table.

“Nymphal ticks, the immature ones, can be hard to spot because they are as small as poppy seeds,” explains Phyllis Mervine, president of the California Lyme Disease Association, which maintains an educationalwebsite. “They are often in leaf litter or at the base of trees. Adult ticks are often found on the tips of grasses and shrubs. Both immature and adult ticks can transmit the illness.”

She says small children are most vulnerable to the devastating effects of the disease because they are low to the ground and also might pull a tick off of their body without telling anyone. “Parents need to educate themselves about ticks and check their children carefully whenever they’ve been outdoors,” she warns, adding all people should check themselves after spending time outdoors.
“If you do find a tick, remove it and place it in a Ziploc bag with a moist cotton ball and send it to IGeneX for a diagnosis,” Maderis recommends.

In recent weeks, researchers speculated that the direct and indirect effects of global warming will probably increase the incidence of Lyme disease, as well as intensifying the prevalence of tuberculosis and HIV/AIDS and creating a more mosquito-friendly habitat which will up infection rates.

“One possible way in which temperature may limit tick populations is by increasing the length of their cycle from two to thee years in the north, where it is colder,” explained Maria Diuk-Wasser, assistant professor of epidemiology at the Yale School of Public Health. “Climate change could be reverting that and therefore increasing production of ticks.”

While understanding climate control is extremely complex, battling Lyme doesn’t have to be as perplexing given the diagnostic tools now available to the medical community. But are western practitioners biting? “The gold standard way to test is not on the radar of most doctors,” argue Maderis, “But most holistics are already Lyme literate and using it and able to treat patients early for the disease.”
Images: San Diego Lymer; Lyme Disease.OrgMedicalpicturesinfo

Lyme Forum in Saratoga Springs, NY on May 21st!


EVENT: “A Forum on Tick-borne Diseases–What Next?”

2nd April 2012

 
Gibson
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New York Congressman Chris Gibson is hosting a public forum about Lyme disease in Saratoga Springs, NY, on May 21.

Congressman Chris Gibson Invites You to Attend
A Forum on Tick-borne Diseases – What’s NEXT?
Monday, May 21, 2012
Zankel Music Center, Skidmore College, Saratoga Springs, NY

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AN INVITATIONCongressman Chris Gibson (NY-20) invites all individuals, communities, organizations, or enterprises with interests pertaining to Lyme disease and other tick-borne diseases to join him for a unique public forum he will be hosting in the Zankel Music Center, Skidmore College in Saratoga Springs, New York, on May 21, 2012 from 8:30 am to 6:00pm.The event, entitled A Forum on Tick-Borne Diseases – What’s NEXT? seeks to focus public awareness on the future of these difficult diseases. A group of speakers, leaders in their fields, will present forward thinking, problem-solving proposals to a  panel of policymakers from both private and public sectors about what can reasonably happen NEXT to advance the cause of improving the lives of people suffering with Lyme disease and other TBDs.
Pamela Weintraub, renowned author of Cure Unknown, and Executive Editor of Discover, will be the keynote speaker for this event.
PRESENTERS INCLUDE:
Dr. Richard Horowitz, internationally renowned physician and consultant in the field of Lyme and tick-borne diseases as been working with patients for over twenty years. He has seen the evolution of the diseases from the clinical perspective, and will present a proposal for a paradigm-shifting approach to the diseases that could encourage new perspectives, new synergies, and new research in this difficult subject.
Lorraine Johnson, one of the best known and most highly regarded advocates for Lyme patients, is an attorney advocate on issues related to the medico-legal and ethical aspects of Lyme disease and has published over 30 peer-reviewed articles on this topic. She is the Chief Executive Officer of LymeDisease.org, and is a director and an offficer of the International Lyme and Associated Diseases Society.  She will speak on the Burden of Illness, an in-depth study of what the costs are to people who have Lyme  and other tick-borne diseases and to their communities, and she will recommend research paths forward to address these issues.
Holly Ahern, associate professor of Microbiology at SUNY Adirondack, will present the findings of her 2011 research study on the number of cases of Lyme disease that go uncounted in our “official” statistics.  Most cases of Lyme disease are NOT reported, and this number of “invisible” cases, will ultimately have a significant impact on all our communities.
Dr. Daniel Cameron will speak to the immediate need for our policymakers to PROTECT the doctors who are treating according to the ILADS standards.  There are Two Standards of Care, each authorized by the CDC, and the doctors who treat according to the ILADS standards are routinely harassed and intimidated.
Additional speakers will be announced as confirmed.  Registration information will be posted soon…stay tuned…
Please plan to attend!  We need you to come – TO BE VISIBLE!