Hi everybody,
This is a article That was sent to me that was published in a newspaper in Canada called The News it is found at this link -http://www.ngnews.ca/index.cfm?sid=108527&sc=49. I always try to give you the sources of all my information.
I hope everyone is feeling well enough to smile. I know I have had some rough days recently and I really enjoy the good days when they happen. I will be posting some information about some testing I received from my Dr. the other day soon. I found it to be new information for me, so I will pass it on to you.
Be well,
Richard
BY CAIT MCINTYRE
The News
Brenda Sterling-Goodwin believes she contracted Lyme disease about 10 years ago. Back then, she was a cat groomer and a veterinary technician.
Doctors in Nova Scotia doubted her condition. One neurologist told her she had multiple sclerosis. It's common, she says, for people with Lyme disease to be misdiagnosed as having multiple sclerosis, lupus, arthritis, or other illnesses with similar symptoms.
It wasn't until she saw the test results from California that she finally had confirmation she was suffering with the disease.
"(Lyme disease) affects everybody differently," says Sterling-Goodwin, a New Glasgow resident.
In her case, the disease has affected her mobility, especially. While she does prefer to walk, she sometimes uses a wheelchair. She's often in pain over the stiffness in her legs, and her feet are swollen to twice their normal size.
Lyme disease is transmitted by a blacklegged tick, after it has attached itself to the skin for 24 hours. Caused by a form of spirochete bacteria, it can be treated with antibiotics if caught early.
There have been eight confirmed cases of Lyme disease in the province since 2002.
"But the only confirmed cases are the ones that meet Canadian standards, which are not the best," Sterling-Goodwin says.
Every three months, Sterling-Goodwin travels to Maine to see her doctor, but she sends him monthly faxes to update him on her condition while between visits. "There are not a lot of Lyme-literate doctors in Canada, unfortunately."
She says "early diagnosis and education" is key. She hopes the news of a Pictou County tick being discovered carrying the disease will heighten awareness.
She adds those removing ticks should exercise caution. Ticks should never be twisted, burned or squeezed. When removing ticks, always use tweezers and pull upwards, she says.
For more information on Lyme disease, visit http://www.lymeinns.bravehost.com/ or http://www.canlyme.com/.
Wednesday, February 20, 2008
The Resource Report by Mike Filsaime
Hi friends,
This is a great link you need to click on and enjoy. This information is
invaluable for all of you looking for some real gems of knowledge for starting a website on the internet. Mike Filsaime, in my opinion, is one of the most intelligent men I have ever been associated with. I have purchased many of his products and they are all just fantastic. In other words, they deliver what they say they are going to do. I have a bunch of his training DVD's and they have been a great deal of help to me in all sorts of ways pertaining to my internet businesses. Do yourself a big favor and click on this link. It is free!!
Best of luck to you,
Richard
http://www.the-resource-report.com/?newest_version=39746
This is a great link you need to click on and enjoy. This information is
invaluable for all of you looking for some real gems of knowledge for starting a website on the internet. Mike Filsaime, in my opinion, is one of the most intelligent men I have ever been associated with. I have purchased many of his products and they are all just fantastic. In other words, they deliver what they say they are going to do. I have a bunch of his training DVD's and they have been a great deal of help to me in all sorts of ways pertaining to my internet businesses. Do yourself a big favor and click on this link. It is free!!
Best of luck to you,
Richard
http://www.the-resource-report.com/?newest_version=39746
Sunday, February 17, 2008
Healing Lyme -New book by Harrod Buhner
Hey everyone,
This is another fine book on Lyme disease that was published last year. I found this on the Lyme Disease Database Blog and thought you might not have heard about this book yet. These new books contain some great information and we need to get them into the hands of the people that can most benefit from them as soon as possible. Often I hear that people just don't know about the new publications. I will try to keep you informed of all the new books as hear about them. I hope everyone is having a good year so far.
Richard
Borrowed from Lyme Disease Database Blog
3/07 16:50 Filed in: Stephen Harrod Buhner
Stephen Harrod Buhner's book Healing Lyme.
I think probably the most difficult thing Lyme patients have to deal with is the lack of understanding in the medical community and how they're treated by the medical community. So many of them are told it's all in their heads. So many of them are misdiagnosed. So many of them are told that after they do a regular course of antibiotics they should be well, and if they aren't, well, then that's their problem, it's something wrong with them, mentally.
- from my interview with Stephen Harrod Buhner, Nov 30 2006
If you're weary of being reduced by the medical-industrial complex and its outdated myths about Lyme infection and treatment, listen to Stephen. Buy his book. It's like a breath of sweet, fresh air.
How totally refreshing to hear his point of view, based on intensive research into Lyme and the spirochete, after so many eyeball-rolling physicians try to diminish their patients' own experience of illness by swatting it away like a fly. Buhner is an expert on indigenous and spiritual traditions, a master herbalist, teacher, and award-winning author of ten books about herbs and sacred plant medicines. Plus, he comes from a long line of healers and he's sublimely articulate about the Lyme infection, the spirochete and what he calls the "Lyme Wars."
I recently had the pleasure of speaking with him about his research and hearing his thoughts on Lyme activists, whom he considers an exceptionally sophisticated population. That's you, baby.
Want to read more? Stephen Harrod Buhner Interview .
This is another fine book on Lyme disease that was published last year. I found this on the Lyme Disease Database Blog and thought you might not have heard about this book yet. These new books contain some great information and we need to get them into the hands of the people that can most benefit from them as soon as possible. Often I hear that people just don't know about the new publications. I will try to keep you informed of all the new books as hear about them. I hope everyone is having a good year so far.
Richard
Borrowed from Lyme Disease Database Blog
3/07 16:50 Filed in: Stephen Harrod Buhner
Stephen Harrod Buhner's book Healing Lyme.
I think probably the most difficult thing Lyme patients have to deal with is the lack of understanding in the medical community and how they're treated by the medical community. So many of them are told it's all in their heads. So many of them are misdiagnosed. So many of them are told that after they do a regular course of antibiotics they should be well, and if they aren't, well, then that's their problem, it's something wrong with them, mentally.
- from my interview with Stephen Harrod Buhner, Nov 30 2006
If you're weary of being reduced by the medical-industrial complex and its outdated myths about Lyme infection and treatment, listen to Stephen. Buy his book. It's like a breath of sweet, fresh air.
How totally refreshing to hear his point of view, based on intensive research into Lyme and the spirochete, after so many eyeball-rolling physicians try to diminish their patients' own experience of illness by swatting it away like a fly. Buhner is an expert on indigenous and spiritual traditions, a master herbalist, teacher, and award-winning author of ten books about herbs and sacred plant medicines. Plus, he comes from a long line of healers and he's sublimely articulate about the Lyme infection, the spirochete and what he calls the "Lyme Wars."
I recently had the pleasure of speaking with him about his research and hearing his thoughts on Lyme activists, whom he considers an exceptionally sophisticated population. That's you, baby.
Want to read more? Stephen Harrod Buhner Interview .
Saturday, February 16, 2008
New test for Lyme disease not being used?
Published: Friday, February 15, 2008,theledger.com
Local Lab's Discovery Waits for Buyers
LAKE ALFRED | A struggling laboratory here is learning it may require more than building a better mousetrap to get the world beating a path to its door.
After developing an improved diagnostic test for Lyme disease, Central Florida Research Inc. in Lake Alfred is still waiting for a crowd at its doorstep.
"These last seven months, nobody in this business has gotten paid," said Tom Long, 55, the lab's executive director. "The revenue has been just enough to cover our expenses."
The staff has shrunk from eight people to three in the past year, Long said. He hopes the new diagnostic tool, called a "Lyme Antigen Test," will make Central Florida Research profitable.
The lab staff developed the antigen test under the direction of its medical director, Clifford Threlkeld, a pathologist and also lab director for the Heart of Florida Regional Medical Center in Davenport. Central Florida Research has applied for a patent, which it hopes to get in 2009.
"I do think it will be successful," Threlkeld said. "It's not the be-all-to-end-all, but it definitely adds to what's out there."
Lyme is a bacterial disease most commonly spread through the bite of a deer tick. In its early stages, the disease causes flu-like symptoms, including fever, fatigue and muscle or joint pain.
Left untreated, the bacteria can cause chronic problems in the heart and nervous system, including cardiac inflammation and paralysis. It can be fatal.
Because Lyme disease shares symptoms with other illnesses, it's very difficult to diagnose.
Even when doctors suspect a patient might have Lyme, the most widely used diagnostic tool, a blood test called a "Western blot," is accurate less than half the time, said Nick Harris, the owner of IGeneX Labs in Palo Alto, Calif., the leading U.S. lab for Western blot screening.
That high rate of "false negatives" - people who test negative despite having the disease - also causes problems for Lyme sufferers, said Lori Hoerl of the Florida Lyme Advocacy Group in Jacksonville, who has the disease.
If a doctor later diagnoses Lyme disease, insurance companies will use a negative Western blot to deny paying for treatment, she said.
The Central Florida Research test represents an improvement because it detects the actual presence of the Lyme bacteria, said Pat Phillips, its lab director. The Western blot detects only antibodies, or substances the body produces in reaction to the bacteria.
The Lyme Antigen Test has proven to be about 90 percent accurate, Long said.
The lab finished development of the test a year ago, he said, but it took seven months to get state and federal licensing to perform it. Since then, Central Florida Research has been trying to spread the word among front-line doctors who treat the disease.
Besides word of mouth, the lab team has an information booth it has taken to medical conferences and seminars, such as a Jan. 19 event in St. Peterburg, he said.
Central Florida Research does about 10 to 20 tests a day, but it has the capacity to do 100 tests, Long said. It charges $250 per test, slightly higher than a typical lab fee.
The lab's Web site, www.centralfloridaresearch.com, also has helped market the test, he added. It's gotten referrals worldwide, including Chile, England, France and Germany.
From a personal standpoint, the results have been satisfying. A Winter Haven woman in her 30s had led an active, vibrant life until last year, when chronic fatigue forced her to drop out of graduate school, Long said. Previous tests were negative, but the antigen test showed she did have the Lyme bacteria.
"She's gotten her life back. She's back in graduate school," he said.
A 60-year-old woman from Chile also had been battling pain and fatigue for years but tested negative for Lyme, Long said. She's undergoing successful treatment after the antigen test proved positive.
Despite the state and federal certifications and the clinical results, Long, Hoerl and Threlkeld agreed Central Florida Research needs to gain the trust of the medical community before the test becomes widely accepted.
Long said he believes the small Lake Alfred lab can develop the same high regard enjoyed by Harris' IGeneX Labs.
"He's developed a reputation," Long added. "There's room in the marketplace for another company."
[ Kevin Bouffard can be reached at kevin.bouffard@theledger.com or at 863-802-7591. ]
Local Lab's Discovery Waits for Buyers
LAKE ALFRED | A struggling laboratory here is learning it may require more than building a better mousetrap to get the world beating a path to its door.
After developing an improved diagnostic test for Lyme disease, Central Florida Research Inc. in Lake Alfred is still waiting for a crowd at its doorstep.
"These last seven months, nobody in this business has gotten paid," said Tom Long, 55, the lab's executive director. "The revenue has been just enough to cover our expenses."
The staff has shrunk from eight people to three in the past year, Long said. He hopes the new diagnostic tool, called a "Lyme Antigen Test," will make Central Florida Research profitable.
The lab staff developed the antigen test under the direction of its medical director, Clifford Threlkeld, a pathologist and also lab director for the Heart of Florida Regional Medical Center in Davenport. Central Florida Research has applied for a patent, which it hopes to get in 2009.
"I do think it will be successful," Threlkeld said. "It's not the be-all-to-end-all, but it definitely adds to what's out there."
Lyme is a bacterial disease most commonly spread through the bite of a deer tick. In its early stages, the disease causes flu-like symptoms, including fever, fatigue and muscle or joint pain.
Left untreated, the bacteria can cause chronic problems in the heart and nervous system, including cardiac inflammation and paralysis. It can be fatal.
Because Lyme disease shares symptoms with other illnesses, it's very difficult to diagnose.
Even when doctors suspect a patient might have Lyme, the most widely used diagnostic tool, a blood test called a "Western blot," is accurate less than half the time, said Nick Harris, the owner of IGeneX Labs in Palo Alto, Calif., the leading U.S. lab for Western blot screening.
That high rate of "false negatives" - people who test negative despite having the disease - also causes problems for Lyme sufferers, said Lori Hoerl of the Florida Lyme Advocacy Group in Jacksonville, who has the disease.
If a doctor later diagnoses Lyme disease, insurance companies will use a negative Western blot to deny paying for treatment, she said.
The Central Florida Research test represents an improvement because it detects the actual presence of the Lyme bacteria, said Pat Phillips, its lab director. The Western blot detects only antibodies, or substances the body produces in reaction to the bacteria.
The Lyme Antigen Test has proven to be about 90 percent accurate, Long said.
The lab finished development of the test a year ago, he said, but it took seven months to get state and federal licensing to perform it. Since then, Central Florida Research has been trying to spread the word among front-line doctors who treat the disease.
Besides word of mouth, the lab team has an information booth it has taken to medical conferences and seminars, such as a Jan. 19 event in St. Peterburg, he said.
Central Florida Research does about 10 to 20 tests a day, but it has the capacity to do 100 tests, Long said. It charges $250 per test, slightly higher than a typical lab fee.
The lab's Web site, www.centralfloridaresearch.com, also has helped market the test, he added. It's gotten referrals worldwide, including Chile, England, France and Germany.
From a personal standpoint, the results have been satisfying. A Winter Haven woman in her 30s had led an active, vibrant life until last year, when chronic fatigue forced her to drop out of graduate school, Long said. Previous tests were negative, but the antigen test showed she did have the Lyme bacteria.
"She's gotten her life back. She's back in graduate school," he said.
A 60-year-old woman from Chile also had been battling pain and fatigue for years but tested negative for Lyme, Long said. She's undergoing successful treatment after the antigen test proved positive.
Despite the state and federal certifications and the clinical results, Long, Hoerl and Threlkeld agreed Central Florida Research needs to gain the trust of the medical community before the test becomes widely accepted.
Long said he believes the small Lake Alfred lab can develop the same high regard enjoyed by Harris' IGeneX Labs.
"He's developed a reputation," Long added. "There's room in the marketplace for another company."
[ Kevin Bouffard can be reached at kevin.bouffard@theledger.com or at 863-802-7591. ]
Thursday, February 14, 2008
Wednesday, February 13, 2008
TalkMoola, Have you heard about it?
Hello Friends,
I just joined TalkMoola and I had to pass it on to you. Social-Networks have always been a great place to find prospects for your businesses, but this one makes it even easier.. and more profitable!
This is a brief overview of TalkMoola:
> Connect with other members through the use of this full-featured social-networking platform
> Advertise to the membership through classifieds, blogs, bulletins, forum, and more...
> Build a downline 5 levels deep!
> Make lots of moola simply by referring other members to TalkMoola
> Learn how to market online through Training Videos, ebooks, training sessions, and more!
I wanted to keep this short so you can hurry over and take a look yourself.. I highly recommend it!
Go now:
http://www.talkmoola.com/members/?s=831
See you inside!
Richard Bowman
I just joined TalkMoola and I had to pass it on to you. Social-Networks have always been a great place to find prospects for your businesses, but this one makes it even easier.. and more profitable!
This is a brief overview of TalkMoola:
> Connect with other members through the use of this full-featured social-networking platform
> Advertise to the membership through classifieds, blogs, bulletins, forum, and more...
> Build a downline 5 levels deep!
> Make lots of moola simply by referring other members to TalkMoola
> Learn how to market online through Training Videos, ebooks, training sessions, and more!
I wanted to keep this short so you can hurry over and take a look yourself.. I highly recommend it!
Go now:
http://www.talkmoola.com/members/?s=831
See you inside!
Richard Bowman
Tuesday, February 12, 2008
Great Article about Chronic Lyme Disease
Woe to those with chronic Lyme disease
Legislation needed to protect doctors who treat stricken patients
Nov 21, 2007 - 10:04:11 CST.
by Debra Neutkens
Staff Writer
FOREST LAKE — An insidious, chronic disease is creeping into the Forest Lake area and those suffering its debilitating effects are hard-pressed to find treatment.
A "fear factor" exists among doctors who prescribe long-term treatment for patients with Lyme disease. They worry the state medical board (the official name is the Minnesota Board of Medical Practice) will pull their license or slap sanctions against them if antibiotics are given longer than usual.
So sufferers of the bacterium-infected tick bite are rallying support to fight what the president of the Lyme Disease Association calls "a social injustice."
Advocate Pat Smith is a national expert on tick-borne disease. She spoke to politicians and community members recently on behalf of the Minnesota Lyme Action Group, a small, but determined local support group founded by Forest Lake resident Ann Myre.
Their message is simple: Lyme disease is on the rise. Awareness is not.
According to Smith, the nemesis residing in the tiny deer tick that causes Lyme, Borrelia burgdorferi, is becoming established in areas of the state not previously considered high-risk.
And the bad news: the disease is endemic in Forest Lake, meaning highly prevalent.
But Lyme often goes undiagnosed and untreated. Tests are inaccurate, leaving some unlucky victims to fend for themselves because their blood test was negative.
Even those with positive results continue to live with chronic joint pain, heart trouble or neurological damage because most physicians in the state refuse to prescribe long-term antibiotics - about the only remedy to treat chronic Lyme.
City Administrator Chip Robinson can relate to the issue. An avid outdoorsman, Robinson has long suffered neck pain, muscle pain, headaches and an inability to concentrate — all classic signs of Lyme disease.
"I've never found answers to why I have these symptoms. They were just always there and I've learned to live with it," said Robinson. Like 30 to 50 percent of cases, he never had a rash. Only a small number of patients have the telltale "bullseye" rash.
Results from Robinson's Western blot test, a popular blood test that detects Lyme antibodies, was inconclusive, he said. "I was told CDC (Centers for Disease Control) guidelines indicate I don't have Lyme."
Unfortunately, the blot test is complex. The CDC set arbitrary criteria for considering the test positive and it misses many people, said Smith.
Not to be dissuaded, Robinson's strong symptoms keep him on a quest to find a physician willing to treat him long term.
There are less than a handful of doctors in Minnesota who treat Lyme patients. Most Lyme-literate physicians practice in the northeast. The Forest Lake activist group says there are a few doctors in Missouri and California and one in Louisiana, as well.
Robinson made an appointment with a physician knowledgeable about the disease, but his appointment was canceled when his test came back negative. That doctor will take patients only if they have a positive reading using the strict CDC criteria for Western blots.
And there's the rub. The Western blot tests for antibodies against the Lyme bacterium. Yet, during the first year after a tick bite, less than 65 percent of patients produce antibodies and they may not last. By year two, less than 50 percent will have a response.
People suffering from unsuspected Lyme disease are often misdiagnosed as having MS, Parkinson's disease, ALS, Alzheimer's, chronic fatigue, fibromyalgia, Crohn's disease, lupus, autism or a wide variety of psychiatric disorders.
The common treatment for Lyme disease is a two-to-four week course of an oral antibiotic like doxycycline. However, it is not known if this permanently cures the disease. Some patients require IV administration of antibiotics through lines implanted in their chest.
At the special forum held by the support group Nov. 13, Forest Lake Mayor Stev Stegner agreed the issue demands increased awareness.
But more than that, the Minnesota group is looking for state legislation that will allow doctors to treat Lyme disease appropriately and on an individualized basis.
Specifically, they're asking representatives to consider adopting a bill similar to one passed in Rhode Island that protects doctors who treat patients long term for Lyme and other tick-borne diseases against medical board investigations based solely on the use of prolonged courses of antibiotics.
"We need local politicians to take action," said Dr. Betty Maloney, a family practitioner from the Forest Lake area who has late Lyme. "This problem is real. The medical board is very powerful in Minnesota and this forum needs to flex some political muscle. We need a bill."
State Representative Bob Dettmer, Senator Ray Vandeveer and Sean Nienow, district director for Congresswoman Michele Bachmann, attended Smith's presentation. Members of the action group hope to work with the legislators to push a bill through, not an easy task, said Vandeveer, who promised to "assess the climate."
Maloney is a precious resource for the area when it comes to Lyme. She left her practice at the Allina Clinic in 2005 due to Lyme's debilitating effects, but is on the road to recovery and now advocates for Lyme patients. She helps them find resources and get tested, and is willing to talk to their personal physician. "It is encouraging to me that physicians who once could not believe Lyme had so many manifestations now are looking at illnesses they could never identify and finding patients are positive for Lyme."
Treating physicians have their hands tied, she added.
The doctor Robinson wanted to see, for example, is a "Lyme friendly" who is under pressure to not treat infected patients with long-term antibiotics, Maloney told the group.
"He'll only take people with a CDC positive test. And a negative test does not mean you don't have Lyme disease."
According to the Forest Lake doctor, late Lyme cases in the area are mostly neurologic. The screening test for Lyme is very good at picking up patients with Lyme-induced arthritis, but not those with neurologic problems, which may explain why some test results prove false.
Is resistance a factor in the hesitance to use antibiotics long term? "That has been used as an excuse not to prescribe long-term antibiotics," Maloney replied, "but physicians are misinformed. They will prescribe the same long-term antibiotics for acne in teenagers. And there has been no resistance found in this Borrelia species."
Smith calls the Lyme dilemma "a war. There is no way to stop ticks. We need a nationwide effort and people are not sitting at the same table. We need to communicate. Patients aren't able to get treatment.
"There is a society of physicians opposed to treating Lyme," she said. "I travel all over the U.S. talking to groups. People suffering from Lyme are not making this up. They all have the same stories and they are sick. No one is advocating for them and it's a huge social injustice."
Anyone wishing more information can visit the Minnesota Lyme Action Group Web site at www.minnesotalymeactiongroup.com. President Jill Kuschel can be reached at 651-213-1200. Smith's Web site is www.LymeDiseaseAssociation.org.
Press Publications, White Bear Lake, Minnesota
by Debra Neutkens Staff Writer
Legislation needed to protect doctors who treat stricken patients
Nov 21, 2007 - 10:04:11 CST.
by Debra Neutkens
Staff Writer
FOREST LAKE — An insidious, chronic disease is creeping into the Forest Lake area and those suffering its debilitating effects are hard-pressed to find treatment.
A "fear factor" exists among doctors who prescribe long-term treatment for patients with Lyme disease. They worry the state medical board (the official name is the Minnesota Board of Medical Practice) will pull their license or slap sanctions against them if antibiotics are given longer than usual.
So sufferers of the bacterium-infected tick bite are rallying support to fight what the president of the Lyme Disease Association calls "a social injustice."
Advocate Pat Smith is a national expert on tick-borne disease. She spoke to politicians and community members recently on behalf of the Minnesota Lyme Action Group, a small, but determined local support group founded by Forest Lake resident Ann Myre.
Their message is simple: Lyme disease is on the rise. Awareness is not.
According to Smith, the nemesis residing in the tiny deer tick that causes Lyme, Borrelia burgdorferi, is becoming established in areas of the state not previously considered high-risk.
And the bad news: the disease is endemic in Forest Lake, meaning highly prevalent.
But Lyme often goes undiagnosed and untreated. Tests are inaccurate, leaving some unlucky victims to fend for themselves because their blood test was negative.
Even those with positive results continue to live with chronic joint pain, heart trouble or neurological damage because most physicians in the state refuse to prescribe long-term antibiotics - about the only remedy to treat chronic Lyme.
City Administrator Chip Robinson can relate to the issue. An avid outdoorsman, Robinson has long suffered neck pain, muscle pain, headaches and an inability to concentrate — all classic signs of Lyme disease.
"I've never found answers to why I have these symptoms. They were just always there and I've learned to live with it," said Robinson. Like 30 to 50 percent of cases, he never had a rash. Only a small number of patients have the telltale "bullseye" rash.
Results from Robinson's Western blot test, a popular blood test that detects Lyme antibodies, was inconclusive, he said. "I was told CDC (Centers for Disease Control) guidelines indicate I don't have Lyme."
Unfortunately, the blot test is complex. The CDC set arbitrary criteria for considering the test positive and it misses many people, said Smith.
Not to be dissuaded, Robinson's strong symptoms keep him on a quest to find a physician willing to treat him long term.
There are less than a handful of doctors in Minnesota who treat Lyme patients. Most Lyme-literate physicians practice in the northeast. The Forest Lake activist group says there are a few doctors in Missouri and California and one in Louisiana, as well.
Robinson made an appointment with a physician knowledgeable about the disease, but his appointment was canceled when his test came back negative. That doctor will take patients only if they have a positive reading using the strict CDC criteria for Western blots.
And there's the rub. The Western blot tests for antibodies against the Lyme bacterium. Yet, during the first year after a tick bite, less than 65 percent of patients produce antibodies and they may not last. By year two, less than 50 percent will have a response.
People suffering from unsuspected Lyme disease are often misdiagnosed as having MS, Parkinson's disease, ALS, Alzheimer's, chronic fatigue, fibromyalgia, Crohn's disease, lupus, autism or a wide variety of psychiatric disorders.
The common treatment for Lyme disease is a two-to-four week course of an oral antibiotic like doxycycline. However, it is not known if this permanently cures the disease. Some patients require IV administration of antibiotics through lines implanted in their chest.
At the special forum held by the support group Nov. 13, Forest Lake Mayor Stev Stegner agreed the issue demands increased awareness.
But more than that, the Minnesota group is looking for state legislation that will allow doctors to treat Lyme disease appropriately and on an individualized basis.
Specifically, they're asking representatives to consider adopting a bill similar to one passed in Rhode Island that protects doctors who treat patients long term for Lyme and other tick-borne diseases against medical board investigations based solely on the use of prolonged courses of antibiotics.
"We need local politicians to take action," said Dr. Betty Maloney, a family practitioner from the Forest Lake area who has late Lyme. "This problem is real. The medical board is very powerful in Minnesota and this forum needs to flex some political muscle. We need a bill."
State Representative Bob Dettmer, Senator Ray Vandeveer and Sean Nienow, district director for Congresswoman Michele Bachmann, attended Smith's presentation. Members of the action group hope to work with the legislators to push a bill through, not an easy task, said Vandeveer, who promised to "assess the climate."
Maloney is a precious resource for the area when it comes to Lyme. She left her practice at the Allina Clinic in 2005 due to Lyme's debilitating effects, but is on the road to recovery and now advocates for Lyme patients. She helps them find resources and get tested, and is willing to talk to their personal physician. "It is encouraging to me that physicians who once could not believe Lyme had so many manifestations now are looking at illnesses they could never identify and finding patients are positive for Lyme."
Treating physicians have their hands tied, she added.
The doctor Robinson wanted to see, for example, is a "Lyme friendly" who is under pressure to not treat infected patients with long-term antibiotics, Maloney told the group.
"He'll only take people with a CDC positive test. And a negative test does not mean you don't have Lyme disease."
According to the Forest Lake doctor, late Lyme cases in the area are mostly neurologic. The screening test for Lyme is very good at picking up patients with Lyme-induced arthritis, but not those with neurologic problems, which may explain why some test results prove false.
Is resistance a factor in the hesitance to use antibiotics long term? "That has been used as an excuse not to prescribe long-term antibiotics," Maloney replied, "but physicians are misinformed. They will prescribe the same long-term antibiotics for acne in teenagers. And there has been no resistance found in this Borrelia species."
Smith calls the Lyme dilemma "a war. There is no way to stop ticks. We need a nationwide effort and people are not sitting at the same table. We need to communicate. Patients aren't able to get treatment.
"There is a society of physicians opposed to treating Lyme," she said. "I travel all over the U.S. talking to groups. People suffering from Lyme are not making this up. They all have the same stories and they are sick. No one is advocating for them and it's a huge social injustice."
Anyone wishing more information can visit the Minnesota Lyme Action Group Web site at www.minnesotalymeactiongroup.com. President Jill Kuschel can be reached at 651-213-1200. Smith's Web site is www.LymeDiseaseAssociation.org.
Press Publications, White Bear Lake, Minnesota
by Debra Neutkens Staff Writer
Saturday, February 2, 2008
Great Article from The Pennsyvania Gazette about Lyme Disease
Tick Doc
Class of ’87 | After suffering for 30 years from what doctors repeatedly identified as a cardiac disease of unknown origin, Robert Phillips developed heart failure severe enough to bring him to the verge of a heart transplant. Fortunately, the procedure was not needed.
Phillips was diagnosed and treated for advanced Lyme disease—one of the fastest spreading epidemics in the world, and one of the most debilitating. Since his treatment a decade ago, Phillips has enjoyed the benefits of normal cardiac function.
If Lyme is detected and treated properly at the onset of infection, there are usually no long-term medical repercussions. Left untreated or under-treated, however, it becomes an insidious illness, often inducing a myriad of acute and chronic neurological, musculoskeletal, rheumatologic, cardiac, and neuropsychiatric symptoms. Lyme has been identified in medical journals as a probable cause of multiple sclerosis, rheumatoid arthritis, lupus, fibromyalgia, Alzheimer’s, and Lou Gehrig’s disease, to name a few.
For saving his life (and making it worth living again), Phillips can thank Dr. Steven Phillips W’87—his son, who happens to be a leader in the fight against Lyme and other tick-borne diseases. After graduating from Wharton in 1987, the younger Phillips was preparing to enter the business world when a friend who had recently finished medical school dared him to pursue a career in medicine.
That dare would end up saving—and improving—a lot of lives. Phillips has focused his efforts on combating Lyme ever since he began his residency at the Yale University School of Medicine in 1993.
“I knew a lot of people with Lyme from home,” the New York state native says. “Lyme has its fingers in so many disease states of ‘unknown etiology.’ Even if [it] contributes to only a small percent, the implications are staggering.”
A significant percentage of the medical community still resists accepting Lyme and related tick-borne diseases as such severe threats. “Medical dogma changes slowly, over decades,” says Phillips, who remains confident that his work will ultimately enlighten his colleagues.
In 1996, he stepped away from his research on the microbiology and immunology of B. Burgdorferi (the Lyme bacteria) and established a private practice. Today, operating from his cozy clapboard base camp in Wilton, Connecticut, Phillips wears a casual button-down shirt and blue jeans. The perpetually ringing telephones and fax machines are manned by three women—one of them his mother, Gladys. Despite his laidback demeanor and arid sense of humor, Phillips has a reputation for caring intensely for each patient.
By the time they arrive at his door, most of his patients have already sought the aid of other doctors in every medical field. Phillips is not committed to commonplace Lyme protocol, and he does whatever it takes to alleviate his patients’ suffering and improve the quality of their lives. As a result, he’s in high demand.
“There’s a wait of a few months, two to six depending on the time of the year,” he says. His patients come from all 50 states and many Western European countries.
Lyme patients are not the only people seeking his expertise. Network television and syndicated radio programs have sought his commentary. The governments of Connecticut, Rhode Island, and New York—all in the epicenter of tick-borne diseases—have invited him to provide testimony. His presentations have prompted legislation to fight Lyme and increase education efforts.
In his critique of “Lyme Disease Testing” (Lancet Infectious Disease, March 2006), Phillips makes clear that Lyme disease is taking on epidemic proportions because of the nonexistent efforts to improve an atrocious testing and reporting system—and he implicates government agencies, like the Centers for Disease Control and Prevention.
Having served as president of the International Lyme and Associated Diseases Society (ILADS), Phillips is now a member of the professional advisory board for the Turn The Corner Foundation—a group more focused on funding research and treatments.
With the lay population still mostly ignorant about Lyme, Phillips wishes he could go on a speaking tour, in order to “educate so patients may have more access to medical care,” on a broader scale. In the meantime, he enjoys being a jock in his spare time. As a former instructor, the doctor has a particular soft spot for tennis, but there are other games he enjoys, too:
“Any sports that don’t involve tick exposure.”
—Eric Karlan C’09
Profiles : Events : Notes : Obituaries
Alumnae partner in Nurse-Family Partnership
Wire actor John Doman C’66
Slightly-too-slow bull runner Michael Lenahan C’05
Lyme fighter Steven Phillips W’87
Waste wrapper David Stoller C’72
Sept|Oct 07 Contents
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Last modified 08/30/07
Class of ’87 | After suffering for 30 years from what doctors repeatedly identified as a cardiac disease of unknown origin, Robert Phillips developed heart failure severe enough to bring him to the verge of a heart transplant. Fortunately, the procedure was not needed.
Phillips was diagnosed and treated for advanced Lyme disease—one of the fastest spreading epidemics in the world, and one of the most debilitating. Since his treatment a decade ago, Phillips has enjoyed the benefits of normal cardiac function.
If Lyme is detected and treated properly at the onset of infection, there are usually no long-term medical repercussions. Left untreated or under-treated, however, it becomes an insidious illness, often inducing a myriad of acute and chronic neurological, musculoskeletal, rheumatologic, cardiac, and neuropsychiatric symptoms. Lyme has been identified in medical journals as a probable cause of multiple sclerosis, rheumatoid arthritis, lupus, fibromyalgia, Alzheimer’s, and Lou Gehrig’s disease, to name a few.
For saving his life (and making it worth living again), Phillips can thank Dr. Steven Phillips W’87—his son, who happens to be a leader in the fight against Lyme and other tick-borne diseases. After graduating from Wharton in 1987, the younger Phillips was preparing to enter the business world when a friend who had recently finished medical school dared him to pursue a career in medicine.
That dare would end up saving—and improving—a lot of lives. Phillips has focused his efforts on combating Lyme ever since he began his residency at the Yale University School of Medicine in 1993.
“I knew a lot of people with Lyme from home,” the New York state native says. “Lyme has its fingers in so many disease states of ‘unknown etiology.’ Even if [it] contributes to only a small percent, the implications are staggering.”
A significant percentage of the medical community still resists accepting Lyme and related tick-borne diseases as such severe threats. “Medical dogma changes slowly, over decades,” says Phillips, who remains confident that his work will ultimately enlighten his colleagues.
In 1996, he stepped away from his research on the microbiology and immunology of B. Burgdorferi (the Lyme bacteria) and established a private practice. Today, operating from his cozy clapboard base camp in Wilton, Connecticut, Phillips wears a casual button-down shirt and blue jeans. The perpetually ringing telephones and fax machines are manned by three women—one of them his mother, Gladys. Despite his laidback demeanor and arid sense of humor, Phillips has a reputation for caring intensely for each patient.
By the time they arrive at his door, most of his patients have already sought the aid of other doctors in every medical field. Phillips is not committed to commonplace Lyme protocol, and he does whatever it takes to alleviate his patients’ suffering and improve the quality of their lives. As a result, he’s in high demand.
“There’s a wait of a few months, two to six depending on the time of the year,” he says. His patients come from all 50 states and many Western European countries.
Lyme patients are not the only people seeking his expertise. Network television and syndicated radio programs have sought his commentary. The governments of Connecticut, Rhode Island, and New York—all in the epicenter of tick-borne diseases—have invited him to provide testimony. His presentations have prompted legislation to fight Lyme and increase education efforts.
In his critique of “Lyme Disease Testing” (Lancet Infectious Disease, March 2006), Phillips makes clear that Lyme disease is taking on epidemic proportions because of the nonexistent efforts to improve an atrocious testing and reporting system—and he implicates government agencies, like the Centers for Disease Control and Prevention.
Having served as president of the International Lyme and Associated Diseases Society (ILADS), Phillips is now a member of the professional advisory board for the Turn The Corner Foundation—a group more focused on funding research and treatments.
With the lay population still mostly ignorant about Lyme, Phillips wishes he could go on a speaking tour, in order to “educate so patients may have more access to medical care,” on a broader scale. In the meantime, he enjoys being a jock in his spare time. As a former instructor, the doctor has a particular soft spot for tennis, but there are other games he enjoys, too:
“Any sports that don’t involve tick exposure.”
—Eric Karlan C’09
Profiles : Events : Notes : Obituaries
Alumnae partner in Nurse-Family Partnership
Wire actor John Doman C’66
Slightly-too-slow bull runner Michael Lenahan C’05
Lyme fighter Steven Phillips W’87
Waste wrapper David Stoller C’72
Sept|Oct 07 Contents
Gazette Home
Previous issue’s section
--------------------------------------------------------------------------------
©2007 The Pennsylvania Gazette
Last modified 08/30/07
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About Me
- rbowman838
- Pueblo, Colorado, United States
- I am a Chronic Lyme disease patient. I was bitten by a tick in 2001 and have been very sick ever since. Subsequently, you could say I am a Lyme disease junkie.I thirst for any information about it,any treatments, research etc. It has been a life altering experience, which has kept me away from our business and at home most of the time. I use to own A-1 Barricade and Sign Inc. here in Pueblo, Co, but because of the Lyme disease, my sons are running the business for the most part with my wife. I have been married for 48 years to a wonderful woman who is also my best friend. We have five children, all grown. Four boys live here in Pueblo and my only daughter lives in Bonney Lake, Washington. We miss her a lot. I have 7 grandchildren, which are the greatest of all. They are all exceptionally beautiful! The last thing you need to know about me is that I am proud to be a member of The Church of Jesus Christ of Latter-Day Saints. Because of this I have the knowledge that life is eternal and that it does not end here, but it will go on after death because of the Atonement of Jesus Christ. This truth I bear witness of!