August 2009
Lymelife filmmaker turns pain into art
// Filed in: Lyme Disease Story
Actor, writer, producer, editor and composer Steven Martini's latest film is Lymelife. As one reviewer wrote, "Lymelife is a unique take on the dangers of the American Dream."
Steven and his brother Derick learned the craft of filmmaking while making Goat on Fire and Smiling Fish (1999), and wanted to "dig deeper" for their next film. The material they mined for Lymelife is largely autobiographical. Taking place in the late 70s, the story chronicles their childhood in the NE, a first searing adolescent love affair, and the dissolution of their family unit. Scott, 15, begins to see that nothing is quite like he thought it was.
In the story, Scott's girlfriend's father, Charlie, is inflicted with Lyme. In real life, Steven's girlfriend's father had Lyme as well. He watched her family try to deal with illness and found it terrifying. As Steven says, Lyme back then was considered mysterious, even psychosomatic. Sound familiar?
I got a chance to speak with Steven last week. He described the intensity of writing and producing this autobiographical tale. He talks about his creative process and his experience of making the film, and even tells what became of the real life character of Charlie.
Please listen to our conversation by clicking on the Podcast link below.
Steven and his brother Derick learned the craft of filmmaking while making Goat on Fire and Smiling Fish (1999), and wanted to "dig deeper" for their next film. The material they mined for Lymelife is largely autobiographical. Taking place in the late 70s, the story chronicles their childhood in the NE, a first searing adolescent love affair, and the dissolution of their family unit. Scott, 15, begins to see that nothing is quite like he thought it was.
In the story, Scott's girlfriend's father, Charlie, is inflicted with Lyme. In real life, Steven's girlfriend's father had Lyme as well. He watched her family try to deal with illness and found it terrifying. As Steven says, Lyme back then was considered mysterious, even psychosomatic. Sound familiar?
I got a chance to speak with Steven last week. He described the intensity of writing and producing this autobiographical tale. He talks about his creative process and his experience of making the film, and even tells what became of the real life character of Charlie.
Please listen to our conversation by clicking on the Podcast link below.
Ted Kennedy dies. Will insurance reform survive?
// Filed in: Lyme Disease in the news
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.
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.
Listen to Tina Garcia's experience at the IDSA hearing
// Filed in: Lyme Disease Expert
Patient advocate Tina Garcia is passionate about justice and fairness.
Disabled by Lyme in 2004, she soon discovered the injustices in Lyme treatment. Particularly, she was outraged to learn that patients in her position were frequently turned down for medical insurance coverage for the treatment of Lyme disease. Her own insurance requests for coverage were rejected as well, and like so many Lyme patients she had to pay for treatment out of pocket.
When Connecticut Attorney General Richard Blumenthal began the investigation into the IDSA standard of Lyme treatment, Tina submitted her rejected insurance claims to his office. However, her concern wasn't simply about her own welfare. Desire to help others inspired her to found the organization, LEAP Arizona, a Lyme Education Awareness Program. She began a dialog with the Assistant AG, which lead to her invitation to testify on July 30 at the historical IDSA hearing in Washington, DC.
Tina, who is still healing from Lyme, traveled to DC where she delivered her eloquent testimony to the hearing panel. On her website, you will find a link to listen to the IDSA hearing, and a copy of her testimony.
Tina spoke with me on Thursday, August 20, about her experience at the hearing. She describes the day's emotional highlights, in particular the presentations of Drs Ken Liegner and Steven Phillips. She also talks about her faith in the IDSA panel, who, in a matter of months, will be deciding whether or not to recommend changing the standard Lyme protocol.
I invite you to listen to our conversation by joining.
Disabled by Lyme in 2004, she soon discovered the injustices in Lyme treatment. Particularly, she was outraged to learn that patients in her position were frequently turned down for medical insurance coverage for the treatment of Lyme disease. Her own insurance requests for coverage were rejected as well, and like so many Lyme patients she had to pay for treatment out of pocket.
When Connecticut Attorney General Richard Blumenthal began the investigation into the IDSA standard of Lyme treatment, Tina submitted her rejected insurance claims to his office. However, her concern wasn't simply about her own welfare. Desire to help others inspired her to found the organization, LEAP Arizona, a Lyme Education Awareness Program. She began a dialog with the Assistant AG, which lead to her invitation to testify on July 30 at the historical IDSA hearing in Washington, DC.
Tina, who is still healing from Lyme, traveled to DC where she delivered her eloquent testimony to the hearing panel. On her website, you will find a link to listen to the IDSA hearing, and a copy of her testimony.
Tina spoke with me on Thursday, August 20, about her experience at the hearing. She describes the day's emotional highlights, in particular the presentations of Drs Ken Liegner and Steven Phillips. She also talks about her faith in the IDSA panel, who, in a matter of months, will be deciding whether or not to recommend changing the standard Lyme protocol.
I invite you to listen to our conversation by joining.
Anti-inflammatory diet for Lyme
// Filed in: Lyme Disease Diet
I've been under the impression that medical practitioners, such as GP doctors and nutritionists, were familiar with the notion that inflammation is at the core of many diseases. However, it looks like the study of inflammation, and what to do about it, is newer than I thought. According to an Aug 17, 2009 article in the LA Times, Battling inflammation, disease through food, by Shara Yurkiewicz, medical practitioners are just beginning to put two and two together when it comes to inflammation and chronic disease.
"[Chronic inflammation] is an emerging field," says Dr. David Heber, a UCLA professor of medicine and director of the university's Center for Human Nutrition. "It's a new concept for medicine."
The article continues: "The theory goes that long after the invading bacteria or viruses from some infection [such as Lyme bacteria] are gone, the body's defenses remain active. The activated immune cells and hormones then turn on the body itself, damaging tissues. The process continues indefinitely, occurring at low enough levels that a person doesn't feel pain or realize anything is wrong. Years later, proponents say, the damage contributes to illnesses such as heart disease, neurological disorders like Alzheimer's disease or cancer." LA Times article, 8/16/09
When you get a splinter, or a mosquito bite, or suffer an injury such as a broken bone, your body's immune system instantly responds to the pain and offense by sending more blood to the wounded area. The tissue swells and reddens while the healing work gets underway. While it's fairly easy to see a mosquito bite or detect a broken bone, chronic silent inflammation inside the body, which is what Lyme disease may cause, may go unnoticed for years because, as the article states, it occurs at a low level and doesn't hurt. The immune system doesn't switch off.
What can be done? Although more studies are necessary to determine the results scientifically, many people (including me) believe that their eating habits affect their health and can even help bring down chronic inflammation. Choosing foods rich in antioxidants is probably smart, and may even help you feel better while healing from Lyme infection. Antioxidants may slow down or inhibit the tissue damage caused by free radicals at the sites of inflammation.
The Mediterranean diet, for example, is high in antioxidants, including dark green leafy veggies, whole grains such as steel cut oats, nuts, oily fish such as salmon, and bright-colored fruits such as blueberries, pomegranates, dark cherries and raspberries.
Following an anti-inflammatory diet also means eliminating, or at least reducing food that can cause inflammation. Such foods include those with saturated fats, trans fats, corn and soybean oil, refined carbohydrates such as white sugars, red meat and dairy.
"[Chronic inflammation] is an emerging field," says Dr. David Heber, a UCLA professor of medicine and director of the university's Center for Human Nutrition. "It's a new concept for medicine."
The article continues: "The theory goes that long after the invading bacteria or viruses from some infection [such as Lyme bacteria] are gone, the body's defenses remain active. The activated immune cells and hormones then turn on the body itself, damaging tissues. The process continues indefinitely, occurring at low enough levels that a person doesn't feel pain or realize anything is wrong. Years later, proponents say, the damage contributes to illnesses such as heart disease, neurological disorders like Alzheimer's disease or cancer." LA Times article, 8/16/09
When you get a splinter, or a mosquito bite, or suffer an injury such as a broken bone, your body's immune system instantly responds to the pain and offense by sending more blood to the wounded area. The tissue swells and reddens while the healing work gets underway. While it's fairly easy to see a mosquito bite or detect a broken bone, chronic silent inflammation inside the body, which is what Lyme disease may cause, may go unnoticed for years because, as the article states, it occurs at a low level and doesn't hurt. The immune system doesn't switch off.
What can be done? Although more studies are necessary to determine the results scientifically, many people (including me) believe that their eating habits affect their health and can even help bring down chronic inflammation. Choosing foods rich in antioxidants is probably smart, and may even help you feel better while healing from Lyme infection. Antioxidants may slow down or inhibit the tissue damage caused by free radicals at the sites of inflammation.
The Mediterranean diet, for example, is high in antioxidants, including dark green leafy veggies, whole grains such as steel cut oats, nuts, oily fish such as salmon, and bright-colored fruits such as blueberries, pomegranates, dark cherries and raspberries.
Following an anti-inflammatory diet also means eliminating, or at least reducing food that can cause inflammation. Such foods include those with saturated fats, trans fats, corn and soybean oil, refined carbohydrates such as white sugars, red meat and dairy.
Neem oil and ticks
// Filed in: Lyme Disease Dogs
Q: Will neem oil spray kill the ticks on my dog?
A: No, it's not likely. Mature ticks are not usually affected by neem. However, neem oil has been reported to cause female ticks to lay sterile eggs. In addition, neem oil repels ticks. Use it to reduce Sparky's chances of being bitten in the future. Regularly grooming, shampooing and then spraying your dog with neem oil may greatly improve the problem of ticks.
Clean and spray your pet's bedding with neem oil too. Protecting you and your family from tick bites means thinking about all the opportunities the little critters have to encroach on your living space. Clean and spray all the spaces where your pets hang out.
Think of this as a long-term solution, however, and not an immediate fix. Be wary of ads that promise results. Neem oil has been shown to be effective only with certain types of ticks, and cattle and other livestock have been tested more than dogs and cats.
Dogs and kitties (parrots and ferrets) add immeasurable love to our lives. Unavoidably, we take our chances with the dangers they may carry when they run freely outdoors and in, sleep in our beds and lounge on our sofas. Keep an eye on your outdoor pet, making regular tick checks a part of routine grooming. If you've found ticks on your pet, please take them to see your vet right away. Our cats and dogs are vulnerable to Lyme and related tick-borne diseases. The vets I've consulted with say there is often a good chance for recovery, especially if the animal is treated with antibiotics as soon after infection as possible.
A: No, it's not likely. Mature ticks are not usually affected by neem. However, neem oil has been reported to cause female ticks to lay sterile eggs. In addition, neem oil repels ticks. Use it to reduce Sparky's chances of being bitten in the future. Regularly grooming, shampooing and then spraying your dog with neem oil may greatly improve the problem of ticks.
Clean and spray your pet's bedding with neem oil too. Protecting you and your family from tick bites means thinking about all the opportunities the little critters have to encroach on your living space. Clean and spray all the spaces where your pets hang out.
Think of this as a long-term solution, however, and not an immediate fix. Be wary of ads that promise results. Neem oil has been shown to be effective only with certain types of ticks, and cattle and other livestock have been tested more than dogs and cats.
Dogs and kitties (parrots and ferrets) add immeasurable love to our lives. Unavoidably, we take our chances with the dangers they may carry when they run freely outdoors and in, sleep in our beds and lounge on our sofas. Keep an eye on your outdoor pet, making regular tick checks a part of routine grooming. If you've found ticks on your pet, please take them to see your vet right away. Our cats and dogs are vulnerable to Lyme and related tick-borne diseases. The vets I've consulted with say there is often a good chance for recovery, especially if the animal is treated with antibiotics as soon after infection as possible.
Educate yourself about ticks
// Filed in: Lyme Disease Tick
Summertime is so inviting, the trails around my house are shady, green and cool. Summer is also time to pay close attention to the small dangers in the woods and grassy fields. If you hike, camp or hang out in the great outdoors, or know anyone who does, please pass on to this information about ticks and tick-borne diseases.
Everything you always wanted to know about ticks (but were too chicken to ask) is included in this handbook, the new revised edition prepared by Kirby C. Stafford III, PhD Vice Director, Chief Entomologist of the Connecticut Agricultural Experiment Station in New Haven. It's an 84-page booklet that you can download as a PDF.
Tick Management Handbook
Everything you always wanted to know about ticks (but were too chicken to ask) is included in this handbook, the new revised edition prepared by Kirby C. Stafford III, PhD Vice Director, Chief Entomologist of the Connecticut Agricultural Experiment Station in New Haven. It's an 84-page booklet that you can download as a PDF.
Tick Management Handbook
Clashing views at the IDSA hearing
// Filed in: Lyme Disease in the news
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?
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?