Hi everyone,
Below is both the article and the link for the blog of Dr. Jernigan. Dr. Jernigan is a lyme-literate doc who has written some books and many articles about Lyme disease. Check out his blog and make sure you read this article.
Be well,
Richard
http://www.drjerniganblog.com/articles/infections/843
Why is Lyme Disease Largely Being Ignored?
August 31, 2010 in Infections with Comments (0)
Today I was asked the following question via a comment on my Facebook page
“In your humble opinion, WHY is media & gov’t ignoring the plight of over 2.3+ billion people in their suffering? Is it because of their involvement in bioweaponizing this bacteria on Plum Island or is it deeper than this? This is question many of us are plagued with… God Bless Always. Thank you.” Mary B.
Dear Mary, I have pondered this same question for the past 12 years that I have been helping people with this illness. While Lyme disease might have been a weaponized bug from Plum Island, it comes down to who is going to treat these chronically ill people in a hospital setting. In a hospital the human conditions are departmentalized into Neurology, Cardiology, Nephrology, Rheumatology, Infectious Disease, and every other ‘…ology.
Most chronic Lyme sufferers have virtually every system being effected to one degree or another, so unless the hospital is going to send these patients to every department there is no one in the their system who understand the totality of everything that is going wrong. The Infectious Disease docs don’t deal with neurology nor do the Neurologists deal with Infectious Disease and so on. So in reality no one wants to take ultimate responsibility for the multi-system collapse seen in chronic Lyme case. I believe the hospital system is down playing the infection of LD so that the Infectious Disease docs can put the patient on antibiotics for six weeks…declare them “cured” and then funnel each person to the next most applicable department to deal with their piece of the puzzle.
Every doctor can only go as far as they have been taught. Doctors can train in American Biological Medicine for up to an additional 2000 extra training hours beyond their doctorate to learn to deal with these incredibly complex multi-system illnesses. At this time there is not a Department of Chronic Illness in any hospital nor is there a specialty that focuses upon the complex inter-connections between every system of the body…only Biological Medicine docs are trained to handle everything from Infectious Disease to Cardiology to Neurology to Rheumatology, and so on.
As it stands, many doctors are so specialized in one aspect of healing that it is very much like picking one piece of a puzzle that has 1000′s of pieces and trying to determine what the puzzle picture is before putting it together. As far as I know only Doctors of Biological Medicine are trained extensively enough and have the necessary healing tools to put the puzzle of the chronically ill patient together.
Wednesday, September 1, 2010
Thursday, July 29, 2010
Misdiagnosis- A Common Problem
Hi my friends,
I have copied this article from Mercury News and Patty Fisher. It is another fantastic article of another victim of Lyme disease that was misdiagnosed. Isn't it truly amazing that are so many of us that are misdiagnosed. Hopefully, each of us in our own spheres of influence will increase the overall awareness of this awful disease. Fine articles such as this one written my Miss Fisher certainly shed more light on this problem.Be well,
Richard
Fisher: After long struggle with Lyme disease, Bart's going home
Posted: 07/29/2010 03:51:06 PM PDT
Updated: 07/29/2010 05:19:58 PM PDT
Click photo to enlarge 
Bart Fenolio, left, gets help as he walks down the hallway at A Grace... ( KAREN T. BORCHERS )
Bart Fenolio still tires easily, needs a walker to get around and has occasional memory lapses. He knows it could take years for him to overcome the devastating effects of chronic Lyme disease.
But for a 70-year-old guy who had been told he was dying of Lou Gehrig's disease and couldn't breathe on his own or pick up a cell phone when I saw him six months ago, Fenolio looks pretty darn good. And he is counting his blessings.
"I'm just so lucky to have a family and so many friends who could advocate for me," he told me Thursday as he prepared to leave the San Jose nursing home where he has been recovering since December. "I've lost a lot of muscle mass — I've got no buns — but I'm finally on the road to recovery."
In January, I told the story of the former San Jose State track star, classic-car nut and golfer who contracted Lyme disease from a tick bite but was misdiagnosed with amyotrophic lateral sclerosis, an incurable illness. The longtime owner of a Campbell tropical fish store was bitten by the tick while walking his dog in Morgan Hill seven years ago and began to develop symptoms two years ago.
Only through the persistence of Heidi, his wife of 46 years, and their scientist son and social-worker daughter was Bart given a series of Lyme tests that came back positive. He says his doctors at Kaiser Permanente insisted he had ALS even though he began to improve with antibiotics, and he left Kaiser to get the
Fast-growing disease
Lyme disease, a bacterial illness spread by ticks, is the fastest-growing infectious disease in the country, with 28,921 confirmed cases and 6,277 probable cases reported in 2008.
First identified in Connecticut in the 1970s, it still is not understood. Tests for Lyme are notoriously unreliable, and it can masquerade as Parkinson's disease or arthritis.
After I wrote about Fenolio's case, I was inundated with inquiries from people with similar stories and those who suspected they might have the disease. I have been referring them to the California Lyme Disease Association at http://www.lymedisease.org/.
Since then the Fenolios, who retired to San Diego four years ago but came back to the Bay Area to find a Lyme specialist, have been living here, Bart in a nursing home and Heidi with friends in Saratoga. They have become strong advocates for Lyme education.
"We have met so many people who were misdiagnosed," Heidi said.
"There's so much of it out there," Bart added, "but people don't realize it."
Legislation that would provide more money for research and testing for Lyme is inching its way through Congress. But advocates for patients with chronic Lyme suffered a blow in April when a federal review panel refused to endorse the use of long-term antibiotics, saying that treatment posed too great a risk of side effects.
The panel's decision infuriated Bart and Heidi because they are convinced that the antibiotics he has been taking since October saved his life.
"Why withhold treatment when you've already got a death sentence?" Heidi asked. She is confident that some day Lyme will get the attention it deserves. But for now, patients have to fight for treatment.
"I always say we're just five years too early," she said.
The disease has taken its toll on the family financially as well as physically. Medicare has picked up much of the cost of Bart's treatment, but the Fenolios have spent about $100,000 of their savings.
"It's been a real journey," Heidi said, shaking her head. "I don't even know how to describe it. This week especially has been just horrible for him because he can't wait to get home."
At last, Bart's wait is over. This morning, he and Heidi are scheduled to fly to San Diego, where their daughter will meet them in Bart's 1939 Ford woodie wagon. A procession of woodies driven by members of the San Diego Woodie club will escort them home. Then Bart will be able to sit in his backyard by his koi pond, feel the ocean breezes, enjoy Heidi's veal scallopini and sleep in his own bed for the first time in a year.
"It will be so good to get him home," Heidi said. "Just to be able to hold his hand during the night, I can't even tell you."
Contact Patty Fisher at pfisher@mercurynews.com or 408-920-5852.
Sunday, July 18, 2010
Living with Lyme Disease
WMUR-TV, Channel 9, Manchester, New Hampshire has produced a great six part video production called Living with Lyme. It is a must view for anyone wanting an understanding of the severity of Lyme disease on a growing population of victims. Please take the time to watch these short videos.
Be well,
Richard
The entire program is available online in six parts:
Living With Lyme Disease Part 1 of 6 (7:10)
http://www.wmur.com/video/24259080/index.html
Living With Lyme Disease Part 2 of 6 (7:15)
http://www.wmur.com/video/24259091/index.html
Living With Lyme Disease Part 3 of 6 (10:57)
http://www.wmur.com/video/24259097/index.html
Living With Lyme Disease Part 4 of 6 (8:35)
http://www.wmur.com/video/24259277/index.html
Living With Lyme Disease Part 5 of 6 (5:44)
http://www.wmur.com/video/24259318/index.html
Living With Lyme Disease Part 6 of 6 (4:29)
http://www.wmur.com/video/24259612/index.html
Be well,
Richard
The entire program is available online in six parts:
Living With Lyme Disease Part 1 of 6 (7:10)
http://www.wmur.com/video/24259080/index.html
Living With Lyme Disease Part 2 of 6 (7:15)
http://www.wmur.com/video/24259091/index.html
Living With Lyme Disease Part 3 of 6 (10:57)
http://www.wmur.com/video/24259097/index.html
Living With Lyme Disease Part 4 of 6 (8:35)
http://www.wmur.com/video/24259277/index.html
Living With Lyme Disease Part 5 of 6 (5:44)
http://www.wmur.com/video/24259318/index.html
Living With Lyme Disease Part 6 of 6 (4:29)
http://www.wmur.com/video/24259612/index.html
Sunday, July 11, 2010
Hello again my fellow Lyme sufferers,
Below is another great article which describes the all to often history of those of us who are inflicted with Lyme disease. It comes from the Lakeland Times from Wisconsin. No matter where across the country, the stories are much the same. Here is some more evidence that antibiotic therapy does hep people with Lyme disease.
Be well,
Richard
Begin Quoted article
Leah Gernetzke
Reporter
Friday, July 02, 2010
In a matter of weeks, John and Jillayne Waite watched their healthy, 30-year-old daughter, Jennifer Kane, spiral headlong into debilitating, mysterious illness.
Seven years later, she still hasn't fully recovered.
"No one should have to get sick like this anymore," Kane's mother, Jillayne Waite, said.
That's why they've become outspoken advocates against the culprit of her weakened state - chronic Lyme disease - by attending conferences and presentations by Lyme disease specialists and other health care officials.
The most recent presentation, held by the Centers for Disease Control and Prevention (CDC) in Wausau Thursday, June 17, featured Diep Hoang Johnson of the Wisconsin Department of Public Health, and Ben Beard, the chief of the bacterial diseases branch in CDC's division of vector-borne infectious diseases, who gave an overview of the disease in its stages of severity, as well as prevention tips.
According to their presentation, about 28,921 cases of the disease were confirmed in the United States in 2008, with thousands more estimated to be unconfirmed or simply unreported.
"Now it's the most common vector borne disease in the United States," Beard said. "We often think it doesn't get the respect it's due. There's some 70 or 80 diseases and conditions reported each year to the CDC and we tabulate those ... Lyme disease is actually number seven on that list."
However, several Lyme sufferers at the presentation voiced the opinion that the CDC tended to focus too heavily on surveillance of the disease and recording the numbers.
"We're tired of the statistics," Waite said. "Dr. Beard was a good presenter, and did present a lot of facts - but he still wasn't able to answer the question, what can the CDC do to help someone like Jenn?"
Instead, she said they should focus more on developing and enforcing better diagnostic methods so acute Lyme disease doesn't have a chance to progress into chronic Lyme disease.
Both Beard and the Waites placed an emphasis, first and foremost, on creating better tests.
Beard estimated that the most common tests for Lyme disease, called ELISA and Western Blots, are only 50-60 percent accurate - and in fact, a 2007 Johns Hopkins study showed that as many as 75 percent of patients with Lyme disease test negative using these common tests.
Better doctor education is also key to early detection - many practitioners commonly believe that a bullseye rash, called erythema migrans, must be present in order to diagnose a patient with Lyme disease. However, according to the CDC, the rash is not present in all patients.
Lyme disease, known as "the great imitator, also mimics the flu and other illnesses such as lupus, chronic fatigue syndrome, fibromyalgia and many more, making misdiagnosis common.
Kane was just one patient who slipped through the cracks after testing negative.
"I knew I was bit by two ticks, kept the ticks, but I never got a rash, so I thought, oh I'm fine. And then when I started to get sick, I said, 'could this be Lyme disease?' And I tested for it and came back negative," she said.
But two months after she was bitten in March 2003, she began to exhibit neurological symptoms, especially headaches.
"They were excruciating headaches, like a band around my head, exactly where your cranial nerves are," Kane said. "It just blows my mind now, knowing what I know, that doctors never said, 'oh, those are your cranial nerves, let's look into this.'"
She also became paralyzed and experienced Bell's palsy, or facial immobility.
"My whole body would be paralyzed ... I'd be awake but I couldn't move," she said. "It's scary. You're a 30-something-year-old person thinking you have the whole world in front of you and all of the sudden you're bed-ridden and can barely function."
Kane underwent a gamut of treatments, including cortisone injections, narcotics and a peripheral nerve stimulator that intercepts pain signals to the brain.
"They were constantly treating the symptoms. The bacteria from the tick was in my body. It continued to grow and grow," she said. "Your blood stream can only handle so much of the bacteria, and then it's like the apartment gets full and starts infecting other parts of your body. I personally have had problems with my bone marrow, my spleen and my heart."
At her lowest point, Kane said she dropped to 90 pounds and spent every day with her head under a pillow.
As a result of the pain, Kane could no longer help run Cedar Creek products, the business she owned with her mother, or enjoy the active lifestyle she once had.
"I was doing 20 trade shows a year, I was on the road doing sales," she said. "I was extremely active, my husband Eric and I loved to bike, mountain climb, hike, fish ... My son was two and a half when I got ill. He doesn't even really know the real me. It's kinda sad."
Kane finally had a breakthrough three years after the onset of the disease when she started going to a different clinic and a different doctor, who looked into her case carefully and put her on antibiotics. She also retested positive for Lyme disease.
Since then, she said she's slowly been able to get out of bed and interact with her family again, though her road to recovery is still long.
"I have hope again. It's been seven years. The first four were really, really hard because I didn't know what the next day held, I didn't know if there would be a next day," she said.
Kane is now on what's known as pulse therapy, which kills the bacteria every four weeks, in accordance with the Lyme disease's life cycle.
When the antibiotics kill the bacteria they release neurotoxin that causes extreme pain - a phenomena known as a Jarisch-Herxheimer reaction.
Though Kane says she still has to overcome this pain every four weeks until all of the bacteria has been killed, in addition to many other lingering symptoms, she takes it in stride.
"It's tough, but I keep very balanced, and positive ... no matter how bad today is tomorrow could always be better. I have a positive attitude and a great support network," she said. "My family has just taken this under their wing, and my husband is my pillar, and I have a nine-year-old son who just brings light into the room."
She also wants to help spread the word about the disease so other people don't have to endure a similar situation.
"Thirty days of antibiotics will kill the disease in almost every human being if it's caught within the first six months. There's no reason for people to get sick like this," she said.
She is part of the Lyme disease awareness network, and especially advocates for better education and more accountability among doctors.
"The major Catch-22 is the CDC says, 'we don't give guidelines to doctors on how to treat,' and doctors say, 'we go by the CDC guidelines.' So the patient is stuck in the middle because the CDC doesn't have enough information from enough research to give definitive protocols ... Right now, the research isn't there for the chronic Lyme," she said.
This lack of knowledge has in large part contributed to the many years she spent without adequate treatment.
"I have had so many doctors tell me, you don't even have a disease. They tell me I'm looking for attention, it's all in my head," she said. "I'm not angry with them, they only know what they know ... and the personality of a person that becomes a doctor - there are very few that are going to say 'I don't know,' and the ones that can are the ones that are finding out about chronic lyme and are trying to help their patients."
However, she said knowledge about the disease has improved drastically since she first became ill in 2003. Now, she's working with the Aspirus network, with Lyme disease specialists and doctors at University of Chicago.
"I have a team of doctors who are willing to accept they don't have all the answers. The fact that that bridge has been crossed is amazing," she said.
She's also taking part in new, cutting edge research at Columbia University in New York.
"There's a lot of stuff out there that's very promising," she said.
Leah Gernetzke can be reached via email at lgernetzke@lakelandtimes.com.
End Quoted Article
Below is another great article which describes the all to often history of those of us who are inflicted with Lyme disease. It comes from the Lakeland Times from Wisconsin. No matter where across the country, the stories are much the same. Here is some more evidence that antibiotic therapy does hep people with Lyme disease.
Be well,
Richard
Begin Quoted article
Leah Gernetzke
Reporter
Friday, July 02, 2010
In a matter of weeks, John and Jillayne Waite watched their healthy, 30-year-old daughter, Jennifer Kane, spiral headlong into debilitating, mysterious illness.
Seven years later, she still hasn't fully recovered.
"No one should have to get sick like this anymore," Kane's mother, Jillayne Waite, said.
That's why they've become outspoken advocates against the culprit of her weakened state - chronic Lyme disease - by attending conferences and presentations by Lyme disease specialists and other health care officials.
The most recent presentation, held by the Centers for Disease Control and Prevention (CDC) in Wausau Thursday, June 17, featured Diep Hoang Johnson of the Wisconsin Department of Public Health, and Ben Beard, the chief of the bacterial diseases branch in CDC's division of vector-borne infectious diseases, who gave an overview of the disease in its stages of severity, as well as prevention tips.
According to their presentation, about 28,921 cases of the disease were confirmed in the United States in 2008, with thousands more estimated to be unconfirmed or simply unreported.
"Now it's the most common vector borne disease in the United States," Beard said. "We often think it doesn't get the respect it's due. There's some 70 or 80 diseases and conditions reported each year to the CDC and we tabulate those ... Lyme disease is actually number seven on that list."
However, several Lyme sufferers at the presentation voiced the opinion that the CDC tended to focus too heavily on surveillance of the disease and recording the numbers.
"We're tired of the statistics," Waite said. "Dr. Beard was a good presenter, and did present a lot of facts - but he still wasn't able to answer the question, what can the CDC do to help someone like Jenn?"
Instead, she said they should focus more on developing and enforcing better diagnostic methods so acute Lyme disease doesn't have a chance to progress into chronic Lyme disease.
Both Beard and the Waites placed an emphasis, first and foremost, on creating better tests.
Beard estimated that the most common tests for Lyme disease, called ELISA and Western Blots, are only 50-60 percent accurate - and in fact, a 2007 Johns Hopkins study showed that as many as 75 percent of patients with Lyme disease test negative using these common tests.
Better doctor education is also key to early detection - many practitioners commonly believe that a bullseye rash, called erythema migrans, must be present in order to diagnose a patient with Lyme disease. However, according to the CDC, the rash is not present in all patients.
Lyme disease, known as "the great imitator, also mimics the flu and other illnesses such as lupus, chronic fatigue syndrome, fibromyalgia and many more, making misdiagnosis common.
Kane was just one patient who slipped through the cracks after testing negative.
"I knew I was bit by two ticks, kept the ticks, but I never got a rash, so I thought, oh I'm fine. And then when I started to get sick, I said, 'could this be Lyme disease?' And I tested for it and came back negative," she said.
But two months after she was bitten in March 2003, she began to exhibit neurological symptoms, especially headaches.
"They were excruciating headaches, like a band around my head, exactly where your cranial nerves are," Kane said. "It just blows my mind now, knowing what I know, that doctors never said, 'oh, those are your cranial nerves, let's look into this.'"
She also became paralyzed and experienced Bell's palsy, or facial immobility.
"My whole body would be paralyzed ... I'd be awake but I couldn't move," she said. "It's scary. You're a 30-something-year-old person thinking you have the whole world in front of you and all of the sudden you're bed-ridden and can barely function."
Kane underwent a gamut of treatments, including cortisone injections, narcotics and a peripheral nerve stimulator that intercepts pain signals to the brain.
"They were constantly treating the symptoms. The bacteria from the tick was in my body. It continued to grow and grow," she said. "Your blood stream can only handle so much of the bacteria, and then it's like the apartment gets full and starts infecting other parts of your body. I personally have had problems with my bone marrow, my spleen and my heart."
At her lowest point, Kane said she dropped to 90 pounds and spent every day with her head under a pillow.
As a result of the pain, Kane could no longer help run Cedar Creek products, the business she owned with her mother, or enjoy the active lifestyle she once had.
"I was doing 20 trade shows a year, I was on the road doing sales," she said. "I was extremely active, my husband Eric and I loved to bike, mountain climb, hike, fish ... My son was two and a half when I got ill. He doesn't even really know the real me. It's kinda sad."
Kane finally had a breakthrough three years after the onset of the disease when she started going to a different clinic and a different doctor, who looked into her case carefully and put her on antibiotics. She also retested positive for Lyme disease.
Since then, she said she's slowly been able to get out of bed and interact with her family again, though her road to recovery is still long.
"I have hope again. It's been seven years. The first four were really, really hard because I didn't know what the next day held, I didn't know if there would be a next day," she said.
Kane is now on what's known as pulse therapy, which kills the bacteria every four weeks, in accordance with the Lyme disease's life cycle.
When the antibiotics kill the bacteria they release neurotoxin that causes extreme pain - a phenomena known as a Jarisch-Herxheimer reaction.
Though Kane says she still has to overcome this pain every four weeks until all of the bacteria has been killed, in addition to many other lingering symptoms, she takes it in stride.
"It's tough, but I keep very balanced, and positive ... no matter how bad today is tomorrow could always be better. I have a positive attitude and a great support network," she said. "My family has just taken this under their wing, and my husband is my pillar, and I have a nine-year-old son who just brings light into the room."
She also wants to help spread the word about the disease so other people don't have to endure a similar situation.
"Thirty days of antibiotics will kill the disease in almost every human being if it's caught within the first six months. There's no reason for people to get sick like this," she said.
She is part of the Lyme disease awareness network, and especially advocates for better education and more accountability among doctors.
"The major Catch-22 is the CDC says, 'we don't give guidelines to doctors on how to treat,' and doctors say, 'we go by the CDC guidelines.' So the patient is stuck in the middle because the CDC doesn't have enough information from enough research to give definitive protocols ... Right now, the research isn't there for the chronic Lyme," she said.
This lack of knowledge has in large part contributed to the many years she spent without adequate treatment.
"I have had so many doctors tell me, you don't even have a disease. They tell me I'm looking for attention, it's all in my head," she said. "I'm not angry with them, they only know what they know ... and the personality of a person that becomes a doctor - there are very few that are going to say 'I don't know,' and the ones that can are the ones that are finding out about chronic lyme and are trying to help their patients."
However, she said knowledge about the disease has improved drastically since she first became ill in 2003. Now, she's working with the Aspirus network, with Lyme disease specialists and doctors at University of Chicago.
"I have a team of doctors who are willing to accept they don't have all the answers. The fact that that bridge has been crossed is amazing," she said.
She's also taking part in new, cutting edge research at Columbia University in New York.
"There's a lot of stuff out there that's very promising," she said.
Leah Gernetzke can be reached via email at lgernetzke@lakelandtimes.com.
End Quoted Article
Tuesday, July 6, 2010
Bloggers Guide to Profits
Surprising Truth: Many Business Owners Are Using Blogs To Promote New Ventures, New Products, Establish Customer Relationships And Make Lots Of Money In The Process!
Here's what else you'll learn in this report...How blogging has given anyone the power to broadcast their message to the world.
The secret marketing tactic that is hiding inside each and every blog (that not everyone is exploiting!)
* Why businesses, small and large, are increasingly adding blogs to their marketing repertoire.
* 5 ways to explode your business with a blog.
* 8 rules you must follow if you want to have a successful blog.
* How something called "RSS feeds" can help you communicate with your customers even better than email!
* The secret to getting your blog listed in Yahoo search results free within 48 hours.
You can purchase and download your copy of this great e-book at http://www.rbowman838digitalproducts.com/index.php?main_page=product_info&products_id=86">
Wednesday, June 30, 2010
Yet another Lyme disease victim !
Hello again,
Below is another fine article which describes another's battle with Lyme disease. It is another testimony that progress is slowly being made but that there is a long way to go to finding a cure.
Be well,
Richard
Begin quote"
News
Long road back: Shippensburg girl’s battle with late-stage Lyme disease
Photo by C.J. Lovelace
Documentary to be shown this weekend details dangers, research
By C.J. LOVELACE
Associate Editor
Published: Wednesday, June 23, 2010 8:24 AM EDT
A tiny creature carrying an immensely devastating disease could be found right in your backyard.
According to the Centers for Diseases Control (CDC), Pennsylvania has recently become to most endemic region for Lyme, a cureless disease that in its late stage, carried by the bite of a tick, is very difficult to diagnose and treat because its symptoms are so diverse.
If caught late, it becomes more and more difficult to understand and defend against.
Four years in the making, one Shippensburg family, just one of many, has experienced the difficulties of battling Lyme first hand.
By the age of 16, Barry and Diana Holtry’s daughter, Heather, was progressively becoming more ill at the hands of this disease. Heather said her family remembered removing the first engorged tick from the top of her head when she was 5 years old in the mountains of Massanutten, Va. She wasn’t exactly sure if this was when she became infected, but what they experienced over the next few years was difficult to say the least.
Lyme disease is bacterial infection, complicated when co-infections are involved, which cause inflammation pain and swelling all over the body if not treated. It created confusion for the Holtrys, their doctors and great amounts of pain for Heather.
When the root answers to her physical symptoms were not able to be determined locally, the family was forced to travel long distances, as far as Connecticut and Washington, D.C., to meet with doctors and specialists in efforts to figure out what was affecting Heather’s body.
For Heather, when she was finally diagnosed with Lyme disease, it was a relief.
“At first, I was relieved because my journey had started when I was very, very young and we didn’t know what we were dealing with,” she said. “A diagnosis, to me, meant we could move forward … but that was kind of before we understood the whole picture and how deep it goes in the treatment and the effect it can have on your body. I have only been able to come as far as I have because of my faith and the way the Lord answered our prayer for guidance.”
If caught early, Lyme disease can be treated and managed in a fairly effective manner, but if it’s caught late, like in Heather’s case, it allows the disease to disseminate into vital organs, tissues and it “becomes a multi-system and multi-symptom involvement disease,” explains Diana.
It affected every single body system inside their daughter’s body, from her brain and nervous system to her cardiovascular system. Heather’s case was complicated by several co-infections and the Holtrys did not see evidence of two of the co-infections for the first year of her treatment because of the suppression to her immune system.
Heather began to have difficulty managing even every day tasks, such as walking, eating, sleeping. She was unable to string a sentence together and she developed short-term memory loss. Her mother and father recall several episodes when Heather suffered seizures, temporary paralysis and an endless list of symptoms because of the spirochetal load throughout her body.
Heather endured swelling of the lining of the brain and lost her vision until the swelling was brought under control. Migraines, joint and muscular pain, extreme fatigue, and the list goes on, said Diana.
It left the Holtrys with few places to turn for answers.
Because of the current time in history of Lyme, a politically driven disease, and the fact that science and new types of treatment are continuing to emerge, Heather’s parents said that the family became more like researchers.
“Barry and I did not know anything about Late stage Lyme; could not imagine that this disease could cause so many life-threatening complications, so much pain … but we prayed, we researched and we were led to our answers,” said Diana. “It is a long, journey home, but, Heather’s doctors tell her she is ‘stellar.’ We know her to be a beautiful role model of strength and faith. She is a warrior and our come-back kid. She is not alone; we have had the humble privilege of meeting many young people and people of all ages and walks of life across this nation who have suffered in similar ways because of the missed diagnosis.”
With the help of a diversified unit of doctors and specialists working together and constantly evolving information, Heather slowly has been gaining ground. She is on a long-term treatment regiment to include several physical therapies each week. Their goal is cleansing her body of the deadly pathogens that had affected so many of her body systems and a rebuilding of her nearly destroyed, severely suppressed immune system.
Today, Heather seems like your normal almost-20-year-old girl. She is in her second year as a part time student in the Fashion Management/Retail Bachelor’s program at the Art Institute of Pittsburgh and is planning a Lyme disease charity runway fashion show in September that she plans to put on as a fundraiser to benefit a much needed grant funded research project through the Lyme Disease Association (LDA).
Diana says her daughter is on an anti-inflammatory diet and, because of a Lyme-induced chemical sensitivity, her doctors have determined her drug resistant. She is on a specific and intense protocol targeted at pathogens, toxicities, detoxification and laboratory identified deficiencies. Over time, Heather’s protocol continually evolves under the watchful eye of her medical team to keep her late-state Lyme under control, but because of lack of a cure at this stage, the fight against this disease has a long ways to go.
Heather’s case may seem unique, but it truly is not. According to CDC, only about 10 percent of reported Lyme disease cases are true diagnoses.
For this reason, the Holtry family now serve as volunteer national Lyme disease educators and on the invitation of the Shippensburg Church of the Nazarene and the Shippensburg Evangelical Free Church will be presenting a documentary entitled “Under Our Skin – The Untold Story of Lyme disease” this Saturday, June 26, from 3 to 6 p.m. at Premier Events, 429 E. Orange St., Shippensburg. Doors will open at 2:45 p.m.
The documentary, illustrated through several case studies, details the science and politics of the disease, teaches the viewer more about the disease, but does not instill fear.
“We do not educate by fear; we equip,” says the Holtry family. “We support what we present with science. We work with top ILADS (International Lyme and Associated Diseases Society) Lyme doctors, researchers, molecular biologists … this is what a parent will often have to go through in order to understand the right approach for their child, or if it’s a personal case, for their individual care.”
A “360-degree documentary,” according to the Holtrys, the film really educates viewers, creating a personal feel that doesn’t just relate facts.
“This is so personal yet, packed with truth,” said Heather.
“We need to be equipped to be able to advocate for our health and wellbeing,” Diana continued. “I think differential diagnosis is imperative because it’s a very confusing disease; physicians and citizens alike simply need to be educated.”
The documentary, which is not suitable for children but okay for teens, is free to the public and reveals the shocking human, medical and political dimensions of Lyme. Recognized nationally within a month of its premiere, it is produced by Open Eye Pictures.
Reservations are necessary to ensure adequate seating for the showing. E-mail SCentralPaLymeForum@yahoo.com to sign up. Be sure to include your name, phone contact information and the number in your party. If you do not have e-mail, call 717-532-7402.
Copyright © 2010 - The Shippensburg News-Chronicle
End quote
Below is another fine article which describes another's battle with Lyme disease. It is another testimony that progress is slowly being made but that there is a long way to go to finding a cure.
Be well,
Richard
Begin quote"
News
Long road back: Shippensburg girl’s battle with late-stage Lyme disease
Photo by C.J. Lovelace
Documentary to be shown this weekend details dangers, research
By C.J. LOVELACE
Associate Editor
Published: Wednesday, June 23, 2010 8:24 AM EDT
A tiny creature carrying an immensely devastating disease could be found right in your backyard.
According to the Centers for Diseases Control (CDC), Pennsylvania has recently become to most endemic region for Lyme, a cureless disease that in its late stage, carried by the bite of a tick, is very difficult to diagnose and treat because its symptoms are so diverse.
If caught late, it becomes more and more difficult to understand and defend against.
Four years in the making, one Shippensburg family, just one of many, has experienced the difficulties of battling Lyme first hand.
By the age of 16, Barry and Diana Holtry’s daughter, Heather, was progressively becoming more ill at the hands of this disease. Heather said her family remembered removing the first engorged tick from the top of her head when she was 5 years old in the mountains of Massanutten, Va. She wasn’t exactly sure if this was when she became infected, but what they experienced over the next few years was difficult to say the least.
Lyme disease is bacterial infection, complicated when co-infections are involved, which cause inflammation pain and swelling all over the body if not treated. It created confusion for the Holtrys, their doctors and great amounts of pain for Heather.
When the root answers to her physical symptoms were not able to be determined locally, the family was forced to travel long distances, as far as Connecticut and Washington, D.C., to meet with doctors and specialists in efforts to figure out what was affecting Heather’s body.
For Heather, when she was finally diagnosed with Lyme disease, it was a relief.
“At first, I was relieved because my journey had started when I was very, very young and we didn’t know what we were dealing with,” she said. “A diagnosis, to me, meant we could move forward … but that was kind of before we understood the whole picture and how deep it goes in the treatment and the effect it can have on your body. I have only been able to come as far as I have because of my faith and the way the Lord answered our prayer for guidance.”
If caught early, Lyme disease can be treated and managed in a fairly effective manner, but if it’s caught late, like in Heather’s case, it allows the disease to disseminate into vital organs, tissues and it “becomes a multi-system and multi-symptom involvement disease,” explains Diana.
It affected every single body system inside their daughter’s body, from her brain and nervous system to her cardiovascular system. Heather’s case was complicated by several co-infections and the Holtrys did not see evidence of two of the co-infections for the first year of her treatment because of the suppression to her immune system.
Heather began to have difficulty managing even every day tasks, such as walking, eating, sleeping. She was unable to string a sentence together and she developed short-term memory loss. Her mother and father recall several episodes when Heather suffered seizures, temporary paralysis and an endless list of symptoms because of the spirochetal load throughout her body.
Heather endured swelling of the lining of the brain and lost her vision until the swelling was brought under control. Migraines, joint and muscular pain, extreme fatigue, and the list goes on, said Diana.
It left the Holtrys with few places to turn for answers.
Because of the current time in history of Lyme, a politically driven disease, and the fact that science and new types of treatment are continuing to emerge, Heather’s parents said that the family became more like researchers.
“Barry and I did not know anything about Late stage Lyme; could not imagine that this disease could cause so many life-threatening complications, so much pain … but we prayed, we researched and we were led to our answers,” said Diana. “It is a long, journey home, but, Heather’s doctors tell her she is ‘stellar.’ We know her to be a beautiful role model of strength and faith. She is a warrior and our come-back kid. She is not alone; we have had the humble privilege of meeting many young people and people of all ages and walks of life across this nation who have suffered in similar ways because of the missed diagnosis.”
With the help of a diversified unit of doctors and specialists working together and constantly evolving information, Heather slowly has been gaining ground. She is on a long-term treatment regiment to include several physical therapies each week. Their goal is cleansing her body of the deadly pathogens that had affected so many of her body systems and a rebuilding of her nearly destroyed, severely suppressed immune system.
Today, Heather seems like your normal almost-20-year-old girl. She is in her second year as a part time student in the Fashion Management/Retail Bachelor’s program at the Art Institute of Pittsburgh and is planning a Lyme disease charity runway fashion show in September that she plans to put on as a fundraiser to benefit a much needed grant funded research project through the Lyme Disease Association (LDA).
Diana says her daughter is on an anti-inflammatory diet and, because of a Lyme-induced chemical sensitivity, her doctors have determined her drug resistant. She is on a specific and intense protocol targeted at pathogens, toxicities, detoxification and laboratory identified deficiencies. Over time, Heather’s protocol continually evolves under the watchful eye of her medical team to keep her late-state Lyme under control, but because of lack of a cure at this stage, the fight against this disease has a long ways to go.
Heather’s case may seem unique, but it truly is not. According to CDC, only about 10 percent of reported Lyme disease cases are true diagnoses.
For this reason, the Holtry family now serve as volunteer national Lyme disease educators and on the invitation of the Shippensburg Church of the Nazarene and the Shippensburg Evangelical Free Church will be presenting a documentary entitled “Under Our Skin – The Untold Story of Lyme disease” this Saturday, June 26, from 3 to 6 p.m. at Premier Events, 429 E. Orange St., Shippensburg. Doors will open at 2:45 p.m.
The documentary, illustrated through several case studies, details the science and politics of the disease, teaches the viewer more about the disease, but does not instill fear.
“We do not educate by fear; we equip,” says the Holtry family. “We support what we present with science. We work with top ILADS (International Lyme and Associated Diseases Society) Lyme doctors, researchers, molecular biologists … this is what a parent will often have to go through in order to understand the right approach for their child, or if it’s a personal case, for their individual care.”
A “360-degree documentary,” according to the Holtrys, the film really educates viewers, creating a personal feel that doesn’t just relate facts.
“This is so personal yet, packed with truth,” said Heather.
“We need to be equipped to be able to advocate for our health and wellbeing,” Diana continued. “I think differential diagnosis is imperative because it’s a very confusing disease; physicians and citizens alike simply need to be educated.”
The documentary, which is not suitable for children but okay for teens, is free to the public and reveals the shocking human, medical and political dimensions of Lyme. Recognized nationally within a month of its premiere, it is produced by Open Eye Pictures.
Reservations are necessary to ensure adequate seating for the showing. E-mail SCentralPaLymeForum@yahoo.com to sign up. Be sure to include your name, phone contact information and the number in your party. If you do not have e-mail, call 717-532-7402.
Copyright © 2010 - The Shippensburg News-Chronicle
End quote
Monday, June 28, 2010
Hi Everyone,
I hope you all are enjoying your summer. I enjoy fishing and I thought you might like to know how to become a better fisherman. I have a great e-book that can give you some tips.
If you are sick and tired of coming home from fishing trips empty handed, having to eat fast food instead of delicious steamed trout, then this will be the most important message you read today.
Let me tell you why:
There is more to fishing than you might have first thought. To be more precise, there’s more to the fish themselves and how they think, than you would have ever even considered. To learn this and more click on the link below.
Click Here!
I hope you all are enjoying your summer. I enjoy fishing and I thought you might like to know how to become a better fisherman. I have a great e-book that can give you some tips.
If you are sick and tired of coming home from fishing trips empty handed, having to eat fast food instead of delicious steamed trout, then this will be the most important message you read today.
Let me tell you why:
There is more to fishing than you might have first thought. To be more precise, there’s more to the fish themselves and how they think, than you would have ever even considered. To learn this and more click on the link below.
Click Here!
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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!