Great Article a must read!

Hi everyone,

Please check out this great article from Hagerstown Magazine. The direct link is http://www.hagerstownmagazine.com/articleDetail.aspx?id=1737.



Once Bitten: Lyme Disease
For Lyme Disease Sufferers, Severe Symptoms Don’t Always Lead to a Clear Diagnosis.

by Rachel Pappas + photos by Jamie Turner

• • •

For 15 years, Hagerstown’s Sagittarius Salon & Spa Owner Marsha Knicley-Masood suffered brain fog, chronic fatigue and trouble breathing. The dozen endocrinologists, cardiologists and neurologists she met couldn’t offer a clear diagnosis, and doctors at Johns Hopkins Infectious Diseases Department assumed she had an infection, though they knew not what it was. Marsha, now 63, who once played 18 holes of golf, cut back to two holes, then to one, then couldn’t even sit up. “I’d come home from my shop Saturdays and get into bed until Wednesday when I had to go back in,” she recalls. “I felt so sick that even the sheets hurt.”

Lyme titer and Western blot tests, which identify antibodies the immune system produces to fight bacteria, found the culprit — Lyme disease. Maryland has the sixth highest prevalence of the disease in the country, and it is near epidemic proportions in Frederick and Washington counties — with the Washington County Health Department tallying 50 possible cases over a two-month period in the spring of 2010. Even so, the disease, caused by the bacterium Borrelia burgdorferi and contracted through deer ticks, is underreported in the region, say local practitioners. “Most medical doctors are not educated to recognize it, and there is no campaign to educate the public,” says Marianne Rothschild, M.D., a family practitioner in Mount Airy, Md., who also is certified in holistic medicine. Dr. Rothschild says it’s hard to recognize if you don’t get the bull’s-eye rash, a common indicator of Lyme, but one that 20–40 percent of sufferers neither get nor notice.

Marsha did not get the bull’s-eye rash and was shocked after learning of her diagnosis. “I had been tested at Johns Hopkins several times, and all tests were negative.” The disease is said to lay dormant for years in some sufferers, and Marsha’s symptoms didn’t begin until shortly after she caught spinal meningitis at 48 years old. Marsha and her doctors assume she contracted Lyme from a tick bite during one of her many childhood summers along the Potomac River, but the meningitis may have triggered an onset of symptoms more recently.

‘Under Our Skin’
While most sufferers are symptom free after a month on antibiotics, for some patients the disease is hard to treat. Even after her diagnosis and antibiotic treatment, Marsha still experienced vomiting, diarrhea, fatigue and chills. Recently, much of her pain was alleviated through three months of at-home, long-term IV therapy, in combination with herbs, probiotics and an infrared sauna. Most herbs are trial and error, but Marsha says she benefited from resveratrol, maca and others. Supplements such as vitamins B-12 and D3, alpha lipoic acid, glutathione and artemisinin have helped as well.

At her small practice, Dr. Rothschild sees two to three cases of Lyme weekly during tick season (spring and fall). She refers the toughest cases to Greg Lee, an acupuncturist, herbalist and co-founder/owner of Two Frogs Healing Center in Frederick. Greg says the biggest challenge with diagnosing Lyme is that it often looks like other diseases, such as arthritis, flu, lupus and fibromyalgia. “Another problem is that the medical community is going on old guidelines,” he says. “To this day, medical textbooks say treat Lyme with short rounds of antibiotics.” They say the blood must contain five of 10 antibodies for a Lyme diagnosis; however, more recent research suggests a patient can produce three or four and still be positive. “Some patients will go on for five years before producing more antibodies,” Greg says. “By then, the infection gets stuck in the body.”

Frank Boddicker is a classic case of Lyme caught late — eight years after he began seeing doctors who misdiagnosed him with everything from depression and flu, to sinusitis and hypochondria. The 58-year-old contracted the disease 30 years ago, before the medical community knew of Lyme. He believes he was infected after a tick bit him during a trip to Summit Point Raceway near Summit Point, W.Va., leaving the classic bull’s-eye rash days later. Frank was a fitness addict, lifting weights three times a day, running every morning, hiking and biking. Then, he was stricken with flu-like symptoms, debilitating fatigue and later Bells Palsy, also associated with Lyme.

Today, Frank lives in a trailer in the woods outside of Knoxville and is on disability because, even now, his fatigue won’t subside. “I finally found a doctor that put me on long-term antibiotics. It put me back to where I’d been for three years. I was able to go back to work.” Frank says rest and supplements have helped, as well as avoiding gluten, dairy and shellfish. “But having the infection for so long and my age have caught up with me, and I have slipped.”

For years Frank has reached out to other Lyme sufferers. He started support groups in Frederick and Hagerstown but shut them both down when members became too sick to attend. Frank still fields calls from patients throughout the Washington, D.C., Baltimore and West Virginia areas, offering advice on supplements and probiotics, and encouraging callers to find a “Lyme-literate doctor.” Marsha, too, is a strong advocate of Lyme disease awareness. At Sagittarius, she sells a film called “Under Our Skin,” an Academy Award-nominated documentary that educates viewers on diagnosis, treatment and how to find a Lyme specialist. “People I don’t even know call me every week,” she says. “I tell them to see ‘Under Our Skin’ and read ‘Cure Unknown.’ They’re excellent sources for learning how to get good care. And, when you read about others who’ve experienced it, you don’t feel so crazy.”

The Sooner, The Better
Jon Weaver is one of the lucky guys; his Lyme disease was caught fairly early. The 35-year-old Frederick resident contracted Lyme in 2007. “My symptoms began in winter, which is an odd time to get Lyme because we aren’t outside a lot and ticks aren’t active,” he says. Jon’s initial symptom was a constant tightness in his right knee, which continued to get worse. “It filled with fluid, and later my left elbow got a large, swollen puss ball on it.”

Jon thought his ailment was a soccer injury. “Being a typical guy, I figured it would go away and waited two months to see a doctor.” He then endured three grueling months of doctors’ visits and misdiagnoses, even after blood work and an MRI. Jon was scheduled for knee surgery, until the orthopedic surgeon he was referred to discovered the problem was actually Lyme disease and began treatment. “About three months after I started antibiotics I was able to hike, then jog and finally got back on the bike,” Jon says. “Getting to normal speed and strength took four months.” He’s been symptom free for several years and was told he is cured.

Doctors say more accurate tests for diagnosing the disease are in the works, including those that screen for newly identified mutations found in people with Lyme, but they are years from FDA approval. In the meantime, it is important to remember to be your own strongest health advocate. Dr. Rothschild urges anyone bitten to take the tick to Clongen Labs in Germantown, Md. “Patients can download information on Clongen’s site on what to do. I urge them to take the situation in their own hands.” Jon advises anyone with flu-like symptoms and persistent fatigue to do their homework, and consider Lyme disease as a possible ailment. “Don’t let [doctors] shrug it off,” he says. “Get a test, and get a second opinion on the results.”

• • •

A Closer Look
Knowledge is Power When It Comes to Recognizing and Treating the Symptoms of Lyme Disease.

Symptoms
• Often a red rash that looks like a bull’s-eye
• Ongoing fatigue
• Shortness of breath
• Intermittent aches and pains
• Confusion and forgetfulness
• Trouble with balance, digestion and sometimes heart problems (in severe cases that have gone unchecked)

To diagnose
• Patients should get a full panel of blood work, including the Lyme titer and Western blot test
• Take infected tick to Clongen Lab in Germantown for further testing. Visit www.clongen.com.

Treatments
• Antibiotics for 30 days if caught early, longer if the infection persists
• Vitamins
• Probiotics
• Lymphatic drainage
• Detox techniques such as infrared sauna and brushing. Brushing is circular motions with a hand-held brush starting at the feet, working up toward the heart, followed by brushing the arms, again working toward the heart.
• A diet that is low in or free of dairy and gluten, free of shellfish, and includes meats without hormones and preservatives

For more information on the symptoms, diagnosis procedures and treatments for Lyme disease, visit www.cdc.gov.

• • •

Ticked Off
Guard Against Ticks and Bites With These Helpful Tips.

Ticks prefer to live in wooded areas, low-growing grasslands, seashores and yards. Lyme disease is a year-round problem, although April through October is considered tick season, with ticks being very active in the spring and early summer. Limiting possible exposure to ticks reduces the likelihood of infection to tick-borne diseases, and a careful inspection and prompt removal of crawling or attached ticks is crucial. The Washington County Health Department recommends these precautions in areas where ticks are present:

• Wear light-colored clothing, which allows you to see ticks that are crawling on your clothing. Tuck your pants legs into your socks so that ticks cannot crawl up the inside of your pants legs.
• Apply repellents to discourage tick attachment. Repellents containing permethrin can be sprayed on boots and clothing, and will last for several days. Repellents containing DEET (N,N-diethyl-meta-toluamide) can be applied to the skin, but will last only a few hours before reapplication is necessary. Follow instructions carefully, and use DEET with caution on children.
• Conduct a body check upon return from potentially tick-infested areas by searching your entire body for ticks. Use a hand-held or full-length mirror to view all parts of your body — including under your arms, in your belly button, and in and around your ears. Remove any tick you find on your body.
• Check children for ticks, especially in the hair, when returning from potentially tick-infested areas. Ticks may also be carried into the household on clothing and pets and only attach later, so both should be examined carefully to exclude ticks.

Visit www.cdc.gov/Features/StopTicks for additional tips and information on reducing ticks in your yard.

Loss, Pain, and Frustration

Here is another article that we read all too often. It was authored by By Victoria Ross, Springfield Connection, Connection
Newspapers, Alexandria, Virginia.


Lyme Disease: Epidemic ‘Largely Ignored’
Governor’s Task Force on Lyme disease hears stories of loss, pain and frustration.

By Victoria Ross Thursday, March 31, 2011

Tricia Platas, a Springfield mother of four, sat in front of Gov. Bob McDonnell’s Lyme Disease Task Force on Tuesday, March 24, clenched her hands together, and testified about losing her 9-year-old daughter, Amber Marie, to Lyme disease.

“It was a few months after her ninth birthday when we really knew something was wrong,” Platas said. “She woke up one morning in so much pain that she could not walk to the bathroom. This was a little girl who loved to laugh, loved to sing and dance, Amber was the light of our lives.”
Platas cried when she told the panel and 120 attendees how desperate she was to make the many doctors she saw with Amber to take her daughter’s “mysterious” illness seriously. In her frantic search for a cure, she took Amber to a doctor who strapped the little girl to a bed, and waved foul-smelling oils in her face. “Amber was screaming. I just can’t believe anyone would do that,” she said.

“I wanted them to treat my little girl right, so I wouldn’t always ask the right questions, or demand answers. I feel terrible about that,” she said. “You have to push for answers.”

Amber Marie Platas died on April 22, 2002, at Children’s National Medical Center.

Platas was one of 25 area patients and caregivers who testified about their experiences with Lyme disease at Immanuel Bible Church in Springfield. They shared stories of pain, fear and fatigue with the eight-member panel of health department officials and legislators’ representatives. It was the fifth public testimony hearing about the spread of Lyme disease in the Commonwealth.

Led by Michael Farris, chancellor of Patrick Henry College in Purcellville, the task force will propose recommendations to the governor after its final hearing April 25. Farris’ wife and seven of his 10 children have been diagnosed with Lyme disease. The task force is comprised of physicians, wildlife officials, veterinarians and other experts.

According to the Centers for Disease Control and Prevention (CDC), 900 new cases of Lyme disease were reported in Virginia in 2009, a number the CDC acknowledges could be ten times higher due to under-reporting and inaccurate diagnostic tests. In Fairfax County, 250 cases were reported last year, according to the Fairfax County Health Department.

A deer tick takes about 36 hours to transmit Lyme disease, according to the CDC. The longer the disease goes undiagnosed and untreated, the greater the chances are for brain, heart and joint problems.

“We’re here tonight to listen to people’s stories, hear their recommendations and advocate for more public awareness and education,” Farris said.

A well-known constitutional lawyer, Farris is the founder of the Home School Legal Defense Association (HSDLA) and Patrick Henry College, a Christian liberal arts college that is aimed at home-schooled students.

“Lyme disease is dramatically misdiagnosed, and there is too much denial by doctors that chronic Lyme does not exist,” Farris said.

Mikey Pedersen, a 14-year-old Vienna resident, told the panel that his case of Lyme disease went undiagnosed for a year despite seven doctor visits. He said doctors attributed his symptoms to growing pains. The delayed diagnosis allowed Lyme and co-infections to spread throughout his body causing rashes, severe joint pain, and fatigue.

Kristina Sheridan, a Vienna mother of a teenage daughter with Lyme disease, told the panel her family spent four years seeing 30 doctors, visiting seven hospitals and receiving more than 15 diagnoses before they found a team of doctors determined to get her daughter well.

She gave the panel a list of specific recommendations for the panel to consider, including spraying the edges of school fields and soccer fields with Permethrin, an insect repellant, to kill ticks as well as West Nile Virus.

"I've no doubt both my kids got bitten by ticks on soccer fields,” she said. Sheridan also said parents of children diagnosed with Lyme need to understand the process for Special Education Certification for “other health issues.”

“This certification provides families and the school with the flexibility needed to handle the waxing and waning symptoms, the additional days of absence,” Sheridan said.
Sarah Beasley, a 29-year-old Fairfax woman, told the panel that she is living proof chronic Lyme exists. In 2000, she was a senior at James Madison University and participated in Army ROTC for fun. But then she started having serious muscle and joint pains.

“As soon as each day was done, I’d limp to my apartment and crash into bed,” she said. “My whole life, I had been a six-hours-kind-of-sleep-girl. Suddenly, I would sleep for 13 hours and wake up feeling like I had been hit by a Mac truck.” After 10 years and more than 10 different doctors, Beasley, the director of a local education association, said she is on the path to wellness.

At the end of her testimony, she dumped out a large bag of medications, herbs, supplements and vitamins. “Please understand that it takes all of these to keep me going in the way that I need to function,” she said. “Without them, I will be that girl that is confined again to the downstairs couch.” She added that she wants the panel to encourage research and protect doctors who actually understand “this spreading, debilitating disease.”

Marjorie Veiga, a Lyme disease patient consultant and mother of a teen daughter diagnosed with Lyme disease, said the biggest myth about Lyme disease is that it is easily diagnosed and treated.

“It is difficult to diagnose due to the unreliable screening tests and due to the migrating and remitting symptoms,” she said. “Also, ticks can carry multiple pathogens. If these are not diagnosed and treated, the patient may continue to be unresponsive to multiple therapies.”

“These heartrending cases of misdiagnosis, financial ruin, and social isolation are difficult to hear as we travel throughout Virginia,” Farris said. “But it is important to gather first-hand testimonies about the personal impact of long-term illness. One of our most important goals is to allow people to be heard.”

The final Task Force hearing on the educational needs in Lyme and tick-borne disease will be Monday, April 25, at 1 p.m. in Fairfax. The location of the meeting has not been announced.

“I was so moved by all the stories given at the meeting that night,” Platas said in an interview after the three-hour hearing. “It saddens me to see how many people are still being made sick by this horrible little bug.

Supervisor Pat Herrity (R-Springfield) attended the hearing, and has listed Lyme Disease Awareness as one of his priorities.

In 2009, Herrity, along with Supervisor Michael Frey (R-Sully), conducted a town hall symposium on Lyme disease at Centreville High School. He said he became concerned about the prevalence of the disease after hearing from many of his constituents afflicted with the disease.

“We have an epidemic that we’re largely ignoring,” he said, adding that he hopes the panel considers that one of their recommendations should be to pass legislation similar to that enacted in Connecticut, where doctors are allowed to prescribe extended doses of antibiotics without fear of malpractice lawsuits.

According to “The Connecticut Post,” passage of the bill in May 2009, which allows physicians to diagnose chronic Lyme disease, and treat it with long-term antibiotics was one of the “cornerstone moments of Lyme disease politics over the last decade.”

Similar bills have been introduced in Rhode Island Pennsylvania, Massachusetts, New York and Maryland that would compel insurance companies to pay for antibiotic treatment for chronic Lyme disease CLD.

“For Swine Flu, we went on full red-alert, but more people are afflicted with Lyme disease, and it’s time we take it seriously,” Herrity said.

Those who did not attend the hearings, but want to share how they’ve been affected by the disease may e-mail Farris at lyme@phc.edu.

Over the Edge

Hi Friends,

I need to inform you of a great new book written by a woman who has struggled with Lyme disease. Her name is Brandilyn Collins and the book is titled Over the Edge. It is a suspense novel in which the main character struggles with Lyme disease. Here is a link to see for your self, http://www.lymedisease.org/news/touchedbylyme/overtheedge.html

This book is a great read so don't hesitate to get your own copy. You can draw your own conclusions about whether you think she had done a good job capturing the struggles of having Lyme disease.

Be well,

Richard

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

Mysterious Lyme Disease

Here is a great article from the Chicago Sun Times. It is another story of another life affected by this cruel disease

Be well,

Richard
Begin quote:

Shedding light on the mysterious Lyme disease
Patient suffered from painful symptoms of 'the great masquerader' until specialist got a handle on disease


May 5, 2010
BY CAROL SLEZAK cslezak@suntimes.com

When Michael Plahn suddenly began feeling achy and nauseous last Memorial Day, he assumed he had the flu. But when the nausea subsided a few days later, only to be replaced by extreme joint pain and a feeling of utter exhaustion, Plahn realized he was dealing with something else. It was time to see a doctor.

What followed for Plahn was a maddening journey through a medical system that was either unable or unwilling to diagnose and effectively treat his symptoms. Plahn, 38, had no intention of becoming a pawn in a political battle between doctors and insurance companies, but that's what he and an untold number of others seem to have become. They are people suffering from a debilitating illness that some doctors recognize as chronic Lyme disease, and other doctors don't recognize at all.
» Click to enlarge image
Chicagoan Michael Plahn, with infant son Oliver and fiancee Sarah Wilde, says impending fatherhood and other stressful events may have triggered his symptoms.
(Keith Hale/Sun-Times)



Plahn, a Chicagoan, lost track of the number of physicians he saw at a major Chicago hospital last summer, but remembers an internist, an infectious disease specialist, an allergist, a rheumatologist -- plus a few trips to the emergency room when his pain became unbearable. No one was able to diagnose his illness, but they all agreed that he didn't have Lyme disease.

"Early on I was given a Lyme disease test ... but I was told I didn't have it," Plahn said.

Plahn, founder of Life Skills Authorities, a company that helps people fight chemical addiction, recalls one ER doctor laughing at him.

"He said, 'I read your charts and you don't have Lyme disease,'" Plahn said. "He was insinuating that I just wanted to get pain-killers. You know, I know the signs of chemical dependency. I was worried about myself, too. But I didn't know what else to do."

Plahn's fiancee, Sarah Wilde, watched her partner go from an energetic, robust man to a sick and frightened one. His joints were swollen, his muscles hurt, his brain felt foggy. He lost 25 pounds, and most of his energy.

"He had been the picture of perfect health," Wilde said. "He'd built an entire business around helping others be healthy. And suddenly he couldn't even exercise."

Wilde, the director of partner management for Yahoo!, began researching Plahn's symptoms online, and came across something called "chronic Lyme disease." The more Wilde read, the more convinced she became that Plahn had chronic Lyme. But there wasn't a single doctor within this big-city hospital system that agreed. One specialist diagnosed "adrenal fatigue" and prescribed steroids. Another hinted to Plahn that his illness was psychosomatic.

Plahn recited the hospital's final words on the subject: "This was a strong virus of undetermined nature. He will have extreme pain for an undisclosed amount of time."

At his lowest points, Plahn remembers thinking, "Let this be cancer, so at least we can go after it and try to treat it."
'Lyme-literate' doctors

The medical profession agrees on this much: Lyme disease is caused by a spiral-shaped bacteria called Borrelia burgdorferi that's transmitted by tick bites. (The illness was named after the city of Lyme, Conn., where a cluster of the disease was found in the 1970s.) Although it has been reported most heavily in the northeastern United States, Lyme disease has been reported in every state, and across the globe. It can affect the skin, joints, heart and nervous system. Oral antibiotics are the standard treatment for early-stage Lyme disease.

Beyond that, things get tricky. According to the International Lyme and Associated Diseases Society, a significant number of people who contract Lyme either are misdiagnosed during the early stages, or fail to seek medical attention, leading to a chronic form of the disease that requires long-term antibiotic treatment. But in guidelines first published in 2006, the powerful Infectious Disease Society of America maintains there is no scientific evidence to support this theory, and that long-term antibiotic use is dangerous.

In a review prompted by an antitrust challenge by Connecticut Attorney General Richard Blumenthal, a special review panel for the IDSA recently upheld the '06 guidelines. (Blumenthal had questioned the impartiality of the guidelines' authors, suggesting they had undisclosed conflicts of interest.) Although the guidelines are technically not mandatory, many insurance companies use them to deny coverage for chronic Lyme treatment, creating a discouraging situation for patients.

"I don't understand why some doctors want to ignore that this is happening," Wilde said. "It's frustrating that they've turned a blind eye to it, or scarier, that they're saying it's something else."

The medical establishment says it's simply a matter of science.

"They are chronically ill, a little desperate and they are searching for answers," said Dr. Paul Mead, an epidemiologist for the Centers for Disease Control and Prevention. "We can all understand that. The question is: Is the treatment they are getting beneficial?"

Doctors who treat chronic Lyme, dubbed "Lyme-literate" physicians, are few and far between. Plahn travels to Fond du Lac, Wis., for treatment from Dr. Steven Meress of the Fox Valley Wellness Center. After about six months under Meress' care, Plahn has noticed significant improvement. His pain has subsided, his brain is not as foggy, and he has regained some energy. He feels like he is on the right track.

"With chronic Lyme, people think they are going crazy," Plahn said. "You think, 'I'm in excruciating pain, but could it be all in my head?' Could it be psychosomatic? I was open to exploring that. But whatever I have is very real. It came on abruptly and it was not leaving."

Meress, an internist whose practice combines traditional and integrated approaches, sees Lyme patients from 18 states and four countries.

"My patients on average have seen seven physicians over the course of 20 months before coming to me," he said. "They are sick and they are frustrated. Lyme disease has become a political battlefield, and the patients have been put in the middle of this. It's doctor vs. doctor, insurance company vs. insurance company. People have spent $15,000, $30,000 out of pocket to fight this disease. They've lost jobs, spouses, houses. Sometimes it's better to have cancer -- at least the treatment is paid for."

Why are long-term antibiotics necessary? According to the chronic Lyme camp, because the organism that causes Lyme disease is a complicated one that can hide inside human cells, and often is accompanied by co-infections. "This disease is not easy to treat," Meress said.

The chronic Lyme controversy has resulted in investigations of some Lyme-literate physicians by state medical boards. It also has spawned legislative bills in several states aimed at protecting doctors who prescribe long-term antibiotics to treat chronic Lyme.

"It's interesting that it's OK to give [the antibiotic] Doxycycline for five years for acne, but the IDSA suggests only 14 days for Lyme disease," Meress said. "Acne doesn't kill people. Lyme does."
'The great masquerader'

The chronic Lyme camp believes there is no reliable diagnostic test for Lyme, resulting in many false negative results. And Lyme symptoms can mimic those of many other diseases, including Parkinson's, fibromyalgia, multiple sclerosis, Alzheimer's and ALS. The chronic camp calls Lyme "the great masquerader."

Take the case of a Colorado doctor named David Martz. He was diagnosed with ALS, or Lou Gehrig's disease, in 2003 and given two years to live. Although he had initially tested negative for Lyme, he pursued treatment by a Lyme-literate doctor -- and the treatment reversed his symptoms and saved his life.

Some researchers believe patients diagnosed with rheumatologic and neurologic conditions, as well as multi-system illnesses, should be evaluated for chronic Lyme.

A 2009 documentary, "Under Our Skin," shed light on chronic Lyme while taking aim at the IDSA and the medical establishment. But the CDC, which links to the IDSA guidelines on its Web site (cdc.gov), stresses that sound scientific principles form the basis of the guidelines.

"Misdiagnosis is not in the patients' best interest," Mead said. "Yes, we don't know everything. And the patients feel abandoned and frustrated by all of us. ... Is it a persistent infection or post-infection complication? It's been studied several times and all available evidence indicates it's not a persistent infection. But because there was still concern that [patients] might benefit from longer-term antibiotics, several well-defined studies were conducted, and all showed there was no benefit."

From 1992 to 2006, the number of reported Lyme disease cases in the United States more than doubled, from 9,908 to 19,931. In 2008, there were 28,921 confirmed cases -- 108 of them in Illinois. It's commonly believed that the disease frequently goes unreported.

Plahn, an urbanite whose idea of camping is going to the Four Seasons, has no idea where he might have been bitten. But disease-carrying ticks are everywhere, Meress said, including in our backyards and on our pets. Plahn never noticed a telltale Lyme bull's-eye rash on his body, but that's not uncommon, Meress said, noting that fewer than 50 percent of infected people recall a rash.

Plahn learned from Meress that he had been infected for at least 18 months -- and possibly much longer -- before experiencing the symptoms that led him to seek help.

"It was in my bones, my lymph system, everywhere," Plahn said.

He believes that stress -- he was starting a new company, and Wilde was pregnant with the couple's son Oliver, who was born in September -- must have triggered his symptoms because "that's the only thing that makes sense."

There are still so many unanswered questions. For Plahn and Wilde, of course. And for the medical community as well. But like many others suffering from the illness, Plahn and Wilde are confident they've made the right treatment choice.

"At the end of the day we're just happy to have found something to help him feel better," Wilde said.

Dr. Dave Martz - A Lyme Disease Champion

Hi My Friends,

My Dr. Dave Martz was one of the doctors that diagnosed and treated me for Lyme disease. Dr. Martz is a very pleasant man with a determination to find a cure for Lyme disease. He gave up his Lyme disease practice in Colorado Springs due to his illness but is now starting a new job as President of the International Lyme and Associated Diseases Society. Below is an article from the California Lyme Disease Association which talks about Dr. Martz. The full text of the article can be found on http://www.lymedisease.org/news/touchedbylyme/372.html. Dr. Martz was responsible for starting me on Rocephine


Begin Article:
TOUCHED BY LYME: Dr. Dave Martz, who overcame his own ALS death sentence with Lyme treatment, will keynote CALDA conference April 24
15 March, 2010


As Dave Martz lay dying, an idea serpentined around his mind and would not loosen its grip: Despite the absolute diagnosis and the insistence of the doctors, including a world expert, that he was dying of ALS, despite his own vow to face things head-on and reject the lure of denial, Martz couldn’t shake the notion that possibly, just maybe, he actually had Lyme disease. (from "Cure Unknown: Inside the Lyme Epidemic," by Pamela Weintraub.)


Dr. David Martz is kind of a rock star in the Lyme world. You may have read about him in Pam Weintraub’s Cure Unknown, and seen footage of him in the documentary Under Our Skin.

His story is riveting. After a lifetime of good health and a successful career as a physician practicing internal medicine-hematology-oncology for 30 years, in 2003, Martz suddenly started experiencing strange symptoms. First deep fatigue, then profound muscle aches and body-wide pain. Soon he was too weak to get out of bed. As his condition rapidly deteriorated, his physicians gave him a devastating diagnosis: ALS (aka Lou Gehrig’s Disease). They said nothing could stem his physical decline and he would likely be dead within two years.

But events went in a different direction. As his health spiraled downward, Martz connected with a Lyme specialist who prescribed hard-hitting, long-term antibiotics. The gamble paid off. By the end of 2004, Martz was a new man. In fact, the doctor who had diagnosed him so definitively with ALS, now pronounced that condition completely gone.

Martz devoted the next two and a half years to a project that gave extended antibiotics to about 90 ALS patients, and demonstrated objective improvements in 15% of them. He has also treated more than 800 chronic Lyme patients, with good response and minimal side effects. That work is currently being written up for publication.

Martz is moving into a new phase of life now, having recently been named president-elect of the International Lyme and Associated Diseases Society. His term will start in 2011.

Martz will be the keynote speaker at CALDA’s annual patient conference, “Getting Healthy Again in 2010,” on April 24. The event will be held at the Dougherty Station Community Center, 17011 Bollinger Canyon Road, San Ramon, CA.
End Article

Flawed Lyme disease Guidelines

Hello my friends,
Below is a great article from Eugene(Oregon) Weekly(http://eugeneweekly.com/2010/02/18/views3.html) written by Phyliss Mervine. I hope you will take time and read it. I am sure most of you will agree with it and can add your testimony to the problems of having Lyme disease treated. It is about time, people have recognized that the existing guidelines to be done away with and new ones instituted.

Be well,

Richard



Flawed Guidelines
Lyme disease treatment options limited by conflicts and questionable science
By Phyllis Mervine

In her Viewpoint Jan. 28, Dr. Sarah Henderson aligns herself with the flawed Lyme disease guidelines of the Infectious Diseases Society of America (IDSA). The IDSA treatment guidelines are highly restrictive, ineffective, and leave seriously ill patients without effective treatment options. The IDSA guidelines panel which developed the guidelines had serious and significant commercial conflicts of interest with vaccine manufacturers, Lyme diagnostic kit distributors, and insurance companies. The panel did not consider the interests of patients and their treating physicians, with the result that it placed commercial interests above quality of patient care.

The conflicts were so egregious that Connecticut Attorney General Richard Blumenthal launched an antitrust investigation into the IDSA guideline development process. In May 2008, the AG announced a settlement with the IDSA. In a scathing indictment, he concluded that the guidelines process had lacked important safeguards:

• Several of the most powerful panelists held undisclosed financial interests;

• IDSA failed to follow its own procedures for appointing the panel chair and members;

• The panel refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease and blocked appointment of scientists and physicians with divergent views on chronic Lyme.

Under pressure of the investigation, the IDSA entered into an antitrust settlement agreement with the AG. The settlement agreement forced the IDSA to reconstitute a new panel free of conflicts of interest to re-evaluate its guidelines in a public hearing held on July 30, 2009. The panel is expected to make a decision soon. The settlement requires the panel to consider scientific research the prior panel had ignored and to consider divergent viewpoints. The hearing and the scientific evidence submission of the International Lyme and Associated Diseases Society (ILADS) which included approximately 300 pages of analysis and more than 1,300 pages of peer reviewed scientific evidence disputing the IDSA guidelines recommendations can be viewed at HYPERLINK "http://www.ilads.org/"www.ilads.org.

The IDSA guidelines severely restrict clinical judgment and deny patients access to treatment options. Despite the IDSA claims that its guidelines are “voluntary,” medical boards, insurers, hospitals, schools and even child custody agencies regard them as mandatory and IDSA members enforce the guidelines in unprofessional conduct actions against physicians who fail to comply. The IDSA uses the guidelines as a sword to drive its competitors out of business for non-compliance.

The hardship caused to patients by these guidelines is severe. A recent CALDA survey of more than 3,600 people with Lyme disease found that the average patient waited over four years, seeing multiple doctors, before being diagnosed and one third waited more than six years to be properly diagnosed. In addition:

• 90 percent had difficulty or extreme difficulty finding a knowledgeable physician to treat Lyme disease. About 51 percent had traveled more than 100 miles to obtain treatment, and 53 percent had been forced to travel out of state to obtain care.

• 54 percent had been treated and failed treatment under IDSA protocols. A resounding 81 percent stated that they would not consider being treated under IDSA protocols.

• More than 60 percent of respondents who failed to improve under IDSA protocols improved with additional treatment.

• 41 percent of patients were not able to afford the medical care they needed.

• 88 percent had to cut back on work, school and household activities; 50 percent had to either quit work or school due to illness, and another 11 percent went from full-time to part-time work or school.

Denying treatment to patients has huge public health implications. People with under-treated Lyme disease often lose their jobs and insurance. They go from being productive, taxpaying citizens to being bankrupt, disabled consumers of state-provided services, including disability benefits and special accommodations under Section 504 of the ADA. Children lose years of their childhood, missing important developmental milestones. They have terrible quality of life. Suicide is a not infrequent way out, accounting for 50 percent of Lyme deaths.

Several state legislatures have passed legislation protecting physicians who treat people with chronic Lyme disease from prosecution by state medical boards, and in several more states legislation is pending. The legislation will ensure that physicians are allowed clinical discretion to treat — including antibiotic treatment for longer than four weeks if needed — according to their best judgment and evaluation of the individual patient. Patients are entitled to make an informed choice of the treatment they prefer, based on their own personal values and situation, just like patients with cancer or other diseases. Anything less is inhumane.

Dr. Henderson should examine the evidence herself and not accept at face value the interpretation of powerful, self-appointed authorities who have vested interests to protect. As a public health officer, her responsibility is doubly important — human lives are in her hands. Sadly, because of the head-in-the-sand attitude of most Oregon health professionals, Oregonians have to travel to California to obtain care for Lyme disease. Patient advocacy groups she denigrates in her article have done their homework. I’m afraid Dr. Henderson has not.

--

Phyllis Mervine is president of the California Lyme Disease Association (CALDA), “Empowering Patients Through Advocacy, Education & Research,” www.lymedisease.org

Under Our Skin .. a possible Oscar!

Hello everyone,

I saw this on for and wanted to pass it along to you about the movie, "Under Our Skin" that I hope most of you have heard of and taken the opportunity to watch. It has made the short list of 15 for the Oscar nomination. I sincerely hope this film wins the Oscar. It will do wonders for the increase of knowledge around the country for Lyme disease.

Be well,

Richard

The Academy of Motion Picture Arts and Sciences today announced that UNDER OUR SKIN was selected as one of the 15 finalists competing for “Best Documentary Feature” in the 82nd Academy Awards®.

Unfolding like a real-life thriller, UNDER OUR SKIN exposes the hidden epidemic of Lyme disease and reveals how our corrupt medical system is failing to address one of the most serious illnesses of our time. Open Eye Pictures is thrilled that the Academy has honored the courageous Lyme patients and physicians whose stories are told in this film. And we hope that this nomination will help spread awareness about this devastating disease and serve as a catalyst for fixing our country’s broken health care system.

The Documentary Branch Screening Academy Committee viewed all eighty-nine qualifying documentaries during the preliminary round of voting. Academy members will now select five nominees from among the 15 titles on the shortlist, and Academy Awards nominations will be announced on Tuesday, February 2, 2010.

This was taken from the "Underourskin.com home page.

A personal note to all who suffer from Lyme disease!

Hi everyone,

It has been a long time since I have made personal note to the Blog. I have been experiencing a flareup of My Lyme disease problems and it makes me realize even, even more, why we have to defeat this disease. It has been over 8 years since I was stricken with this awful disease. Since then I have gone through working at my business from putting in over 60 hours a week on the average to now having to stay at home. It is an adjustment not easily made. My attempts on this Blog and on the Internet to develop new businesses for me to do from home has been more than frustrating because of the small amounts of time I can work on them. Tasks which I used to do in a few hours, now take me several days of months to accomplish. As a result, a person ends up spending more money than they are taking in. As many of you know having Lyme disease is expensive and debt can be accumulated quickly. So the new business attempts, although starting to trickle in some income, are not doing what they need to do. Brain fog, insomnia, headache, extreme arthritic type pain, overwhelming fatigue, and many other symptoms don't make it easy to accomplish what you have planned in any given day. I am finding how important it is to focus on only one thing at a time, work when I can and then listen to what my body is telling me to do. Those who are experiencing these types of frustrations know and understand the urgency of finding doctors and specialists who ar qualified to treat Lyme disease. I don't know how many times I have heard doctors tell me that they know nothing about Lyme disease and how to treat it. It is if those of us who have this disease are supposed to go home and suffer the debilitating conditions it places on our lives. Why aren't doctors required to stay trained on diseases affecting their patients? This question remains as one of the many unanswered questions of the day. If we have Cancer, we can find specialists to help us. It is that way with most of the other diseases. But Lyme disease patients find little to choose from. Ironically, the ones who are trying to help us are embroiled in the CDC's failure to properly recognize treatments that are working for Lyme disease. Many are afraid of losing their license to practice medicine if they treat Lyme disease with working treatments. In the meantime, thousands of Lyme disease patients are stuck in the middle and continue to see their lives ruined. All in all, some days it becomes quite frustrating. Thank goodness most of us are fighters and we arise the next day ready to continue the battle. For those of you out there going through similar problems, I know how you feel and how much you want to get better. I will continue to try and continue my meager efforts to keep us informed about this brutal disease. I apologize that I have not posted more information in the past couple of years. I hope to do better in the future. If any of you have any concerns or you would like to comment, I urge you to do so. Your struggles are our struggles and hearing them from you makes us all feel better. The main purpose of this blog remains Lyme disease. Yes, I do post some products and services that I have found interesting over the past few years. I list the products only in the attempt to make a little money to pay my medical bills. You are under no obligation to purchase anything from me to visit this blog or to find Lyme disease information. The cure and successful treatment of Lyme disease is why this blog exists. As the holidays are approaching, may I wish you all a wonderful Thanksgiving, a Merry Christmas and a healthy and happy New Year!

Be well,
Richard

New book concerning Chronic Lyme Disease Treatment

Hi My friends,
Here is some info about a great new book regarding Lyme disease. I am glad to see so many fine books coming out to inform us about this terrible disease. I thank Connie Strasheim @http://www.lymebytes.blogspot.com for the post. Check out Connie's blog for great information about Lyme disease.

Be well,

Richard

(Begin article)

Thirteen Lyme-Literate Health Care Practitioners Reveal Their Treatment Strategies for Chronic Lyme Disease in New Book

Thirteen Lyme-Literate Health Care Practitioners Reveal Their Treatment Strategies for Chronic Lyme Disease in New Book
Denver, CO, August 30, 2009 --(PR.com)-- A new book, Insights Into Lyme Disease Treatment: Thirteen Lyme-Literate Health Care Practitioners Share Their Healing Strategies, provides people with Lyme disease and their physicians with current, cutting-edge information on the treatment of chronic Lyme disease and the corollary conditions that it causes.

It is a comprehensive resource, written from the perspective of thirteen Lyme disease experts, including eight Lyme-literate medical doctors (MD’s), two naturopathic doctors (ND’s), a “heilpraktiker” (or healing practitioner, as the German title translates into English) and one chiropractor and nutritionist. The training and education of the experts encompasses a broad range of disciplines, but most use a combination of allopathic, naturopathic, complementary and alternative medicine in their practices. Whatever their background, however, all are experienced in treating chronic Lyme disease.

The book includes each practitioner’s anti-microbial and detoxification protocols, as well as their recommended supportive treatments for the body. It also provides their perspectives on the challenges and roadblocks to healing.

According to the CDC, Centers for Disease Control and Prevention, Lyme disease is the fastest-growing infectious disease in the US, with more than 20,000 new cases reported each year. The CDC estimates, however, that only one in ten cases is reported, which means that there could be at least 200,000 new cases each year, and perhaps even many more than that.

Lyme disease can be treated successfully with antibiotics when - and if - it is caught early, while the Lyme spirochetes are still in the patient’s bloodstream and can be reached by antibiotics. If the disease goes undiagnosed, the spirochetes, (which are related to those that cause syphilis), can infiltrate the non-blood areas of the body, such as the nervous system, brain, heart, joints, and cartilage. The disease then becomes a multi-symptom, multi-system illness that wreaks havoc upon nearly all of the person’s tissues and organs.

Once this happens, Lyme disease becomes chronic and difficult to diagnose. It may masquerade as a variety of other illnesses. Many physicians do not know how to effectively treat it. It devastates nearly every aspect of a person’s existence. ILADS, the International Lyme and Associated Diseases Society, estimates that most chronic Lyme disease sufferers experience a level of disability equivalent to that of a person who has suffered from a recent heart attack. As chronicled in the recently released documentary, "Under Our Skin: There's No Medicine For Someone Like You," those with chronic Lyme experience so much neurological and cognitive dysfunction that they end up losing their jobs, homes, mobility, and, in some cases, their lives.

For those who have been recently diagnosed with Lyme disease or who haven’t received adequate treatment help through the means that have been available to them, Insights Into Lyme Disease Treatment provides a comprehensive variety of effective, in-depth solutions. For the practitioner, it provides cutting-edge information on treatments that has not been published elsewhere.

The information in this book was obtained through interviews with the following thirteen health care practitioners:

Steve Harris, MD
Steven Bock, MD
Susan Marra, ND, MS
Ginger Savely, DNP
Lee Cowden, MD, MD (H)
Ingo Woitzel, MD
Ronald Whitmont, MD
Deborah Metzger, MD, PhD
Pete Muran, MD, MBA
Nicola McFadzean, ND
Marlene Kunold, “Heilpraktiker” (Healing Practitioner, Germany)
Elizabeth Hesse-Sheehan, DC, CCN
Jeffrey Morrison, MD

These practitioners were chosen on the basis of their expertise and experience in treating chronic Lyme disease. After the interviews, Ms. Strasheim wrote the book’s chapters, collaborating with the practitioners in the editing process, to make sure that all of the information from the interviews was accurately represented. Each chapter is devoted to the treatment approach of a particular practitioner, and covers, to a greater or lesser degree, the following:

1) Anti-microbial treatments for Lyme disease and associated infections, including antibiotics, herbs, homeopathic remedies, plant stem cells and biophotons

2) Information on how to support the body’s systems, which is an integral component to healing from chronic Lyme disease. Particular attention is given to the immune, endocrine, neurological, digestive and musculoskeletal systems

3) Treatments for symptomatic relief. Solutions for fatigue, pain, brain fog, depression, anxiety and insomnia are offered, as well as others

4) Detoxifying Lyme biotoxins, mold, candida, heavy metals and other environmental toxins

5) Treating food and environmental allergies

6) Lifestyle and dietary recommendations for faster healing

7) Strategies for healing emotional trauma

8) Patient and practitioner challenges to healing

9) Factors that influence healing

10) Suggestions for how family and friends can help the sick

11) Which anti-microbial treatments work and which don’t

12) How to discern whether Lyme disease is primary in patients’ overall symptom picture

The Author

"Insights Into Lyme Disease Treatment" was written by Connie Strasheim, a Lyme disease sufferer and health care researcher. She is the author of "The Lyme Disease Survival Guide: Physical, Lifestyle and Emotional Strategies for Healing," a book that describes Lyme disease treatment strategies, as well as practical solutions for coping with the difficulties of chronic illness. Ms. Strasheim wrote "Insights Into Lyme Disease Treatment" when she realized that more information on how to treat chronic Lyme was sorely needed from the experts who treat Lyme patients. Prior to becoming ill from chronic Lyme disease, Ms. Strasheim worked as a Spanish instructor, medical interpreter and flight attendant. Ms. Strasheim lives in Denver, Colorado and is available for phone, on-line, and in-person interviews. She can be reached at: 303-949-3347 or via email at: connie9824@msn.com

(End Article)

Availability

The book retails for USD $39.95 and is available at: http://www.lymebook.com/insights-book-connie, or via Ms. Strasheim’s blog at: http://www.lymebytes.blogspot.com. It is published by BioMed Publishing Group.

###
Contact Information
Connie Strasheim
303-949-3347
connie9824@msn.com
http://www.lymebytes.blogspot.com

Lyme "rage", is it real?

Hello friends,

Lyme rage has been a topic much discussed in the media the last few months. For those of us who have Lyme disease I think we can understand how Lyme disease has affected our personality at times. Some of us are more affected than others. However, Lyme "rage" can be a real symptom and all should know about it. This article from ABC News is a good glimpse into the problem. I hope you learn from it.

Be well,

Richard





'Lyme Rage': Can Lyme Disease Affect Your Personality?
Roaming Ticks Can Carry Disease Linked to Physical Problems, Mental Madness
By ELISABETH LEAMY, JOSH GAYNOR and LEE FERRAN

July 30, 2009 —

They're tiny insects that can cause big problems. A rise in the number of ticks this year has infectious disease experts focused on the best way to treat the Lyme disease that the little buggers can spread.

Some 20,000 Americans are infected and treated every year, but countless others go undiagnosed. The illness has symptoms that include fever, fatigue and headaches, but if left untreated, Lyme disease can be more serious.

While there are physical symptoms of the disease that can include severe headaches, severe joint pain and even numbness in the hands or feet, many experts believe Lyme disease can rewire the human brain and affect personality.

"I'm convinced that Lyme in a chronic form can affect psychiatric issues, neurological issues and you can have neurological problems," New York epidemiologist Dr. Daniel Cameron said.

The Center for Disease Control and Prevention notes that up to 5 percent of patients "may develop chronic neurological complaints months to years after infection."

Lyme disease patient Kelly Kulesz told "Good Morning America" she saw herself change overnight because of her infection.

"They put me on stage fright medications," Kulesz said. "Doctors thought it was obsessive compulsive disorder, but it's just not."

When Terry Jo Sedlacek went to trial for allegedly gunning down the Rev. Fred Winters in March, the defense cited his Lyme disease infection and it's contribution to what many call "lyme rage."

But not all experts believe Lyme disease causes such " target="_blank">radical changes in personality.

"The example I like to cite is if I have Lyme disease and I get run over by a truck, the Lyme disease didn't cause my broken leg," Halperin, said Dr. John Halperin, lead author on the new American Academy of Neurology Guideline on Lyme Disease Treatment.

ABC News medical contributor Dr. Marie Savard, who had lyme disease, said that the possibility of personality changes should at least be taken into consideration.

"It does affect the central nervous system. You can have behavior changes, personality changes," she said. "We have to listen and pay attention."

More Information on Lyme Disease

For more information on how to prevent, diagnose and treat Lyme disease, vist the Web sites below.

American Academy of Neurology for Lyme Disease Treatment

Centers for Disease Control and Prevention

Infectious Diseases Society of America

National Institute of Health

National Institute of Health

www.LymeDiseaseAssociation.org

Lyme Disease Foundation: www.lyme.org



Copyright © 2009 ABC News Internet Ventures

Sick from a tick.....another story about Lyme disease

Hi again everyone.

It is time to talk about Lyme disease. Below is a fabulous article from a woman who struggled being diagnosed with Lyme disease. She was forced to do a lot of research on her own and took charge of her medical care. She was finally diagnosed with Lyme disease and Bartonella. Please take time and read her personal struggle. She is another victim of this terrible disease and her story mimics the story of hundreds of Lyme patients.

Be Well,
Rich Bowman


Cover Story - Friday, July 17, 2009from the Dannville Weekly.com

So sick from a tick
'Lyme disease could happen to you,' warns Diablo woman

by Sue Savod

It comes from a tick and it's on the East coast - isn't that what most people know about Lyme disease? And what's that got to do with us here in California? A lot. Because the fact is that Northern California is one of the most Lyme-infected areas in the U.S.A. I want to scream it from the rooftops! Be careful! We have Lyme disease right here!

In January 2008, I was exhausted and just plain felt sick. I went to my family doctor whom I'd seen maybe five or six times during the previous five years. He's a good doctor. He even asks me what I think is wrong before he checks me out. This time I didn't have a clue. He mentioned "virus" and did blood tests. I even asked to be tested for Lyme - I must have read it somewhere. There were lots of reasons for me to be run down as I had been very busy the fall before with my daughter's wedding and finishing a new house. Christmas did me in.

The tests came back - all normal, no Lyme, but an unusually high ANA, which tests protein, specifically antinuclear antibodies, in your blood. The doctor suspected an autoimmune disease, lupus to be exact, and sent me to a rheumatologist. He was also a good doctor, taught and did research, and he listened. He did some more blood, lungs, heart testing and diagnosed me with a "very rare autoimmune disease" called Mixed Connective Tissue disease. Made sense. Except I didn't have all the symptoms. In fact I only had a couple. He said I'd develop more symptoms in the next 10 years. What?! Something inside me said: "That's not what you have."

I also had had knee problems in the summer of 2006. A swollen sore knee. Doctors said it was my crooked kneecap. One wanted to remove it. Hobbled to another who said, "We have to clip the ligaments and that will do the trick." This one was a good doctor., so I had the operation. Didn't work. Had gel injected behind the kneecap along with a cortisone shot (the worst thing for Lyme). That didn't work either. Said I would need a knee replacement eventually. The swelling came and went.

Lower back ache. Went to the doctor. Recommended physical therapy. Went. Didn't work.

I came home and got on the computer. Thank God for the Internet. Lyme disease. It frequently came up when I put in my symptoms. I read more. And more. Blogs, Web sites. The light slowly went on as I saw myself described. Things I didn't even know were symptoms. Brain fog. No energy. Some joint pains. Swollen ankle. Heel pain. Sore neck. Weight gain. Ribs sore. Lower back pain. Ocular migraines (you get the sparklies without the pain). Calf leg cramps.

Did I have all that? Yes, some were infrequent symptoms I hadn't really even thought about until they were pointed out, and they had appeared slowly over time. I wasn't reading the signals. I didn't know the language of Lyme back then. I had ignored almost everything except the fatigue and the knee. In fact I push through most pain and discomfort without awareness. This new information made me finally stop and take stock.

My dear boyfriend bought me two books on Lyme and their information just about convinced me. I was sure I had Lyme. But where did I get it? When did I get it? I sent for my records from my doctor to see if I could track anything down. I never saw a tick and never had a rash that I could remember. Then I saw that in January 2003, I had gone to my doctor with a flu-like illness and a swollen knee.

Bingo! Those are classic Lyme symptoms. I had begun hiking in the Las Trampas hills right behind my home in Alamo where I lived at the time. And ticks like to cling to grasses and shrubs, so they can jump on any carbon dioxide-emitting creature that comes by. Who knows how many creatures carry Lyme. In California, Lyme is carried by the deer tick, Ixodes pacificus, the Western black legged tick that starts out the size of the period at the end of this sentence. As they mature they grow to about the size of a sesame seed. Deer, squirrels and rats and mice are carriers. They don't get Lyme symptoms. The rest of us do. Tick jumps on carrier, tick bites carrier, tick jumps off. If the carrier is a person, Lyme is transmitted. And new evidence says it only takes four hours of tick attachment for you to get Lyme. If you pull off that tick five hours later, you could have Lyme disease.

One San Francisco doctor's name kept coming up in the blogs and on some Lyme Web sites. I made an appointment and had to wait two months, until August 2008. I was nervous. Was it all in my head? I wasn't that sick. Told him what I thought and, without missing a beat, he agreed and suspected, from my descriptions, that I might have another tick-borne disease as well. I asked to be put on antibiotics right then. Sent my blood to a Lyme-sensitive lab in Palo Alto. Normal lab testing rarely catches Lyme, which is difficult to catch with a blood test anyway. One month later - yes, I had Lyme disease and Bartonella, one of the many co-infections common with Lyme. I was almost relieved. At least it had a name. I had no idea the severity of this disease. I was beginning the journey I am on now.

What they test isn't the Lyme bacteria in your blood, but the antibodies your system creates against it. As you are treated and your immune system gets stronger, you put out more antibodies. So if a test doesn't show Lyme right away, that doesn't mean you don't have it. It may just mean your immune system hasn't produced measurable antibodies. Doctors have to go on what patients describe for now. It's called clinical evidence. Eventually it shows up in the tests.

Met a lady from San Ramon the last time I went to my doctor. She had it - hers was manifested in stomach symptoms - as did her college age daughter, who had two co-infections as well. Hers was nuero-borrealis - she couldn't retain anything she was learning. San Ramon! Alamo! It's right here. In fact my doctor currently treats hundreds - that's HUNDREDS - of Lyme patents, most from here in the Bay Area.

Every parent should be aware of ticks and Lyme; 25 percent of Lyme patients are kids. If you live where deer and squirrels live, then you can get Lyme. Kids should be checked after playing outside. One author described her two sons' bouts with Lyme, both now cured. One was ill for seven years. Couldn't even go to school. They thought he had all kinds of diseases - childhood arthritis, mental problems, eye problems, flu. We need to know! If I got it, you can get it.

Centers for Disease Control says one has to have a bulls eye rash, but more than 50 percent of Lyme patients never see one. This disease is the No. 1 vector-borne disease in the U.S.; we have five times the number of Lyme sufferers as AIDS patients. Why don't we know about it? And why didn't my doctors know about it?

CDC's official line on Lyme long has been controlled by a group of doctors, Infectious Disease Society of America (IDSA). They have a narrow definition of Lyme - just rashes and joint problems - completely ignoring the brain symptoms, the stomach problems, the rest of the Lyme symptoms that masquerade as other diseases. Lyme is a very difficult disease to diagnose, but if I could diagnose myself off the Internet, then why isn't my doctor getting the information he needs? Doctors now doing research are too few and far between, and are mostly doing it without financial help. I've found that these doctors had Lyme at one time and that's how they became interested.

One M.D. was diagnosed with advanced multiple sclerosis. He read about Lyme, went to a Lyme-literate doctor and is now cured and doing research. Lyme mimics a lot of diseases - multiple sclerosis, Parkinson's, Lou Gherig's disease, fibromyalgia, chronic fatigue, lupus - my doctor said I would be surprised at the number of cases of "lupus" he has cured. There was even a test of cadaver brains from the Alzheimer's Association and seven out of 10 had the Lyme bacteria. Mine masqueraded as an autoimmune disease.

How many other "diseases" are Lyme? Without informed doctors and better tests we will never know. This is a huge problem that keeps thousands of Americans ill and out of work. Insurance companies won't pay for Lyme, but go along with doctors who deny that chronic Lyme exists. Lyme disease doesn't go away. It grows and debilitates. And it can kill. I was lucky to find mine after only five years. Most patients go seven years and to scores of doctors before they are diagnosed - if they are diagnosed at all. Lyme caught right away takes only about two months of antibiotics to cure. But most Lyme is misdiagnosed. So chronic Lyme can take years to treat. Why don't the insurance companies realize this?

Because Lyme is a bacteria, albeit a virulent one, antibiotics work against it. You start treatment, you get worse, you get better, you get worse - the bacteria's cycle seems to be every four weeks. It's a nasty bug. Some people, not knowing, start the antibiotics and get really sick within a few days - it's called the Herxheimer effect - so they stop their antibiotics. Big mistake. Because Lyme is intracellular and extracellular, it is often treated with two different antibiotics. Some people who don't have a good immune system are critically ill right away. They may require intravenous antibiotics and medical support. And if you have a co-infection, it has to be killed before the Lyme can be treated effectively.

If I got another tick bite, I would find myself a doctor who would treat me immediately, THAT DAY. I fully intend to be cured. After I started treatment, I was fairly sick for a time but just recently I have had the best three weeks in several years. This reminded me how I can feel again. I was lucky to find a doctor who is a member of the International Lyme and Associated Diseases Society (ILADS). These wonderful, true scientists are a growing group of Lyme-literate doctors who keep in touch with each other to combine their acquired knowledge gained through experience to recommend treatment for Lyme.

I know way more than I ever wanted to about Lyme and this is just the short version. I have been researching and reading and learning. I know this: If we don't start paying attention to this disease, it can become an epidemic - or has it already?

Sue Savod is now living in Diablo and taking her antibiotics. She is focusing on her career in animal portraits while regaining her health. Contact her at susavod@comcast.net.

Find this article at:
http://www.DanvilleWeekly.com/story.php?story_id=6347

A Must Read for Everyone !

Hello my friends,

I have borrowed this article from Michealene Cristini Risley. Her blog artice is absolutely a must read for everyone who might like to know about Lyme disease. Kudos to her for doing such a fine job in her article. I originally found it on this link:http://www.huffingtonpost.com/michealene-cristini-risley/lyme---emerging-disease-o_b_180728.html. I always give proper credit to articles I find and use on my blog. The object is to get as much quality information out there as possible. I hope you will take the time to read this article.
Be Well,
Richard
Michealene Cristini Risley
Posted March 30, 2009 | 11:47 AM (EST) BIO Become a Fan Get Email Alerts Bloggers' Index
Lyme - emerging disease or hidden epidemic?



Thomas Gray, the English poet once said, "Ignorance is truly bliss". "Bliss" is a wonderful form of denial if you are in the throes of disease, such as Lyme. The illness can be a painful and debilitating process, fraught with complicated treatments and medical ignorance. One can accept ignorance with an emerging disease, yet not from the organization that is responsible for setting guidelines for treatment such as the Infectious Diseases Society of America:
http://www.idsociety.org/.

One gets angrier when you begin to question the root of that ignorance in the national governing body. Is the behavior based on lack of knowledge or more subversive? Is there an ulterior motive to hide the truth of this ailment? The IDSA guidelines are used by health practitioners to treat the disorder and by many health insurance companies to make coverage decisions. This is the point where ignorance turns into systematic deception, when two parties attempt to squelch doctors who in their treatment have discovered that these guidelines in many cases do not work. These doctors have come under fire, in some cases losing their licenses for assisting people debilitated by this disease. There has been widespread anger by "lymies" (this is what we call ourselves) about controversial treatment options and inadequate guidelines. Still, nothing is being done, and people continue to get sick.

Last May, Connecticut Attorney General Richard Blumenthal announced that his antitrust investigation "uncovered serious flaws in the Infectious Disease Society of America's process for writing its 2006 Lyme disease guidelines..." "The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care," Blumenthal wrote. "They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions." http://www.ilads.org/press_2_07.htm

Several doctors in key roles on the panel were found to have conflicts of interest. "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion."

It is not just the IDSA, The Center for Disease Control http://www.cdc.gov/ncidod/dvbid/lyme/states the following: "Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics." For those of us who have Lyme disease, a few weeks of antibiotics would not begin to attack the source of bacteria let alone the co-infections and dormant phases of the illness. Unfortunately, without proper treatment, the disease takes a stronger hold on the infected; making it much more difficult to cure.

For those of you who are lucky enough to not have any interaction with the disease or people infected, let me explain what Lyme disease is. Lyme disease is a bacterial infection caused by the bacteria Borrelia burgdorferi (Bb) that is commonly contracted from a deer tick bite. Researchers are also discovering that other insects such as; mosquitoes, fleas and lice may also transmit the disease.

Early Lyme disease can produce a wide-range of symptoms and is different in each person. In addition to the initial diagnosis, Lyme can carry many co-infections which can make a person much sicker. The treatment options are varied and most aggressive treatment forms are not supported by traditional western medicine. For now, those of us who have the disease are left on our own to find a treatment that works. It is terribly frightening.

A few years back I had spinal surgery-so I know what serious, debilitating pain is-and I would gladly opt for additional spine surgeries if I could get rid of Lyme disease. It is that debilitating.

Other transmission confirmations that the general public may not be aware of; Lyme disease can be transmitted in uterus, through breast milk and blood transfusions. Some Lyme specialist believes that the disease can be sexually transmitted since the bacteria can be found in saliva and semen; this form of transmission is still in question.

Another troubling aspect of the disease is ability to diagnosis the illness. In many parts of the United States, (and Lyme disease is everywhere) the diagnosis and testing are faulty. In the documentary "Under our Skin" http://www.underourskin.com many of the issues behind this disease are discussed. At one point, in the documentary, a series of "Lymies" show up on the screen. Each person states the number of doctors it took to get a proper diagnosis. Some were searching for years. My search for a diagnosis took five months and twenty-one doctors. Twenty-one doctors in the heart of Silicon Valley and in Stanford Hospitals' backyard. Before I got the diagnosis, I was told that I was pre-menopausal, iron deficient, that I had Addison's disease, Cushing's disease, Adrenal Fatigue and post-trauma from my imprisonment in Zimbabwe: http://www.huffingtonpost.com/michealene-cristini-risley/gratitude-musings-after-_b_62791.html

Other myths that need to be challenged include the statistics on the prevalence of Lyme disease. I contacted the CDC and talked to the San Mateo County Health Department, for the most part they were less than helpful. I was told by the San Mateo County Health Department that I am the only case of Rocky Mountain spotted fever, (another co-infection) in the state of California in over 15 years. I don't believe them. Other thoughts to convey to your physician:

• The number of cases, the geographical scope and the proportion of afflicted that are severe cases needs to be reviewed. Lyme disease is not decreasing, it in increasing. You can get Lyme disease during the winter.
• Over 50% of those people infected by Lyme disease do not get the distinguishing rash or Bull's eye.
• Over 50% of those with Lyme disease get a false-negative on the testing.

We do know that Lyme disease can be debilitating. The disease needs to be researched to figure out all transmission modes for this illness. Since testing for this disease is inadequate, more research needs to be done to determine better testing mechanisms. In my own experience and in reading books such as "Cure Unknown": http://www.cureunknown.com/ so many stories of doctors and facilities that do not believe that the disease exists.

Insurance companies have typically refused paying for treatments. I personally know that insurance companies are refusing many of my costs. This weekend, my insurance company, Blue Shield of California would only pay for 6 pills to rid me of parasites caused by the immune system fallout from Lyme. In order for me to get the proper prescription of the full 30 pills and to rid the parasite, I had to pay over two-thousand dollars for the additional 24 pills. I purchased enough for the weekend and will start to call Blue Shield on Monday. I wish I was kidding.

Many people who have Lyme disease have sounded the alarm, yet the medical establishment is not listening. Why are there so many disbelievers in Western medicine? Why are insurance companies denying the very basic of claims? If the IDSA guidelines are in question, shouldn't the insurance companies be reviewing what is covered?

Two weeks ago, I was so ill with Lyme, that I thought I was going to die. I was getting neurological symptoms, my right leg was caving in, and my mind would not work. I called the following hospitals; Stanford Hospital, Mayo Clinic, University of California-San Francisco, not a one of these top institutions would take me as a Lyme patient. I start to get an inkling what is must have been like at the beginning of the AIDS epidemic.

There are many issues facing our country right now. For me, Lyme disease is at the top of that list. Too many people are becoming debilitated from this disease, some are dying. It is time that the medical establishment takes the politics out of lyme and start practicing they oath they took to help the sick. You can make a difference. Get on-line, call your congress-person, call the White House at (202) 456-1414. Have a conversation with someone who has LYME disease. Help us to take action before Lyme's disease spreads further.

To each his sufferings: all are men,
Condemned alike to groan,
the tender for another's pain;
the unfeeling for his own.
Yet ah! Why should they know their fate?
Since sorrow never comes too late,
And happiness too swiftly flies.
Thought would destroy their paradise.
No more; where ignorance is bliss,
'Tis folly to be wise.

Lyme Disease and Rage

Hi my friends,
This is an interesting article concerning the current public discourse of Lyme Disease and whether it can cause incidents of rage.

I hope everyone is keeping up with the ISDA's current attempt to stop the treatment of Lyme disease with long-term antibiotics. I hope to post an update soon.

Be well,
Richard


Pastor killing: Another act of violence attributed to Lyme disease
March 9, 2009
From the Psychology Today blog, Emerging Diseases
By Pamela Weintraub

http://blogs.psychologytoday.com/blog/emerging-diseases/200903/pastor-killing-another-act-violence-attributed-lyme-disease
or http://tinyurl.com/ctxmlu

Here's a quick post to supplement my story on the chimp attack in
Connecticut, which some pundits attributed to a rage reaction caused by
Lyme disease.

On the heels of the rage-filled chimp story comes a human version: This
weekend a man opened fire on a pastor in a church in Maryville,
Illinois, murdering him with a rain of gunfire. Here, too, the
explanation for the attack has been given as psychiatric illness caused
by Lyme disease. Infected by a tick on the family farm in the early
1990's, the young man was, his family said, left with lesions on his brain.

There's no question that Lyme disease is a neurological illness. It has
been associated with neurological disease for decades in rigorous peer
review in the top medical journals in the world.

Read the complete blog post and join the conversation:
http://tinyurl.com/ctxmlu

Visit underourskin.com and order this movie!

Hi My Friends,
I am sure many of you have heard about a new movie about people dealing with Lyme Disease. The title of this movie is "Under our Skin." On November 14th, UNDER OUR SKIN received two prestigious awards at the annual Freddie Awards, sponsored by the International Health and Medical Media Awards and considered to be the “Oscars of health care films.” At the black-tie event in Philadelphia’s historic Crystal Tea Room, film Producer/Director Andy Abrahams Wilson accepted the award for Best Production in the category of Infectious Diseases. In his acceptance speech, he noted the importance of this validation by the medical establishment, and thanked the judges for helping raise the visibility of chronic Lyme disease. Former CNN health reporter and author Daryn Kagan, the event MC, also presented UNDER OUR SKIN with one of the top overall awards, the Robert E. Wise Award for Outstanding Cinematography, chosen from all the 32 category winners. In addition to these honors, another Open Eye Pictures production, THE CAREGIVERS, was recognized as a Finalist in the category of Caregiving.(Underourskin.com/blog/?p=80. You can watch a trailer and some excerpts of the movie on this Website and their Blog. I have ordered my copy of the movie and can't wait to watch the whole movie. This movie will do a great deal in helping people unfamiliar with Lyme disease, just how devastating it can be. The movie is extremely well done and full of heart tugging stories. Do yourself a real favor and watch this movie.!

Be well,
Richard

Hello everyone.....sorry I have been gone!

Hi friends,

Please accept my apologies for not posting some new information for quite sometime. Having chronic Lyme disease is a reality I have to deal with. Sometimes, it flares up and it tends to take you down for a while. I have been experiencing a real flareup the past few months. I merely took a normal step one night and broke two bones in my right foot. I didn't drop anything on it or anything, it just broke two bones. I was having some problems of swelling in my feet and legs, but it has been attributed to erffects of Lyme disease. I got to have a cast for six weeks, but everything is better in that area right now. For those of you raeding this that have Lyme disease you will know what I mean when I say, I have had pain from the top of my head to the tips of my toes. It hurts to move. I am going to water therapy to help, but the process is slow. Nevertheless, I will try and introduce some new products, websites and and some current activity about Lyme disease treatment over the nest couple of weeks.

I want you to check out two websites of mine.http://www.Bowmanloansplus.com and http://www.rbpharmacywarehouse.com. If you are in the need of a home equity loan or you need to refinance your mortgage I want you to try www.bowmanloansplus.com. I know banks have been very difficult to deal with, but things are loosening up a bit and this website can help you take advantage of many loan products.
The other site www.rbpharmacywarehouse.com is a great way to purchase some of the most popular type of prescription drugs. The prices are hard to beat and the service is outstanding. I order 800 mg Ibuprophen all the time from this site. Please check it out. I will update you with some great products on the next post.

I will talk with you again soon.
Be well,
Rich Bowman

p.s. If there is anyone out ther who has Lyme disease, who is having good luck with a product or treatment, I would love to hear from you. If you need someone to talk to about your disease, I would love to talk with you anytime. I would love to hear about a treatment for chronic Lyme disease and what type of symptoms that you have.

Lyme disease legislation, get involved.

Hello again friends,
I have inserted this excerpt from am e-mail I received from Lymeinfo.net. Here is a chance for all of us to be hard and help to get some worthwhile legislation passed. There is a sample letter included to make it easy for you to get involved. Believe me, your voice does make a difference.

Be well,
Richard


From Phyllis Mervine, California Lyme Disease Association:
Please use the phone/fax numbers below and get this letter, or a similar
one, off to as many of the subcommittee members as possible. Send a few
every day! Feel free to modify my letter.

Please let us know when you do anything so we can get some action going
among ourselves and inspire others to pitch in. This bill will not pass
without a massive effort - massive means small effort by MANY people,
rather than GREAT effort by a few. This is one time that NUMBERS MATTER.
Do your bit!
- Thank you Phyliss!

SAMPLE letter For You to Send to Support HR 741

Dear Congressman or Congresswoman __________:

I am writing to ask you to support HR 741, the Lyme and Tick-borne
Disease Prevention, Education, and Research Act of 2007. It is a
companion bill to S 1708

HR 741 recognizes Lyme disease as a serious and debilitating illness,
often misdiagnosed and under-reported. The CDC admits that only 10
percent of cases are reported. A Georgia study found that only one case
in FORTY is reported. In 2005, the CDC reported 23,305 cases. This means
that at least 233,050 cases occurred and probably more than 40 times
that many, or 932,200 cases. That does not count thousands of cases
never reported at all – cases misdiagnosed as MS, ALS, juvenile
rheumatoid arthritis, chronic fatigue, fibromyalgia, and many others,
and cases undiagnosed because of the insensitivity of the tests (which
miss almost half the cases). Tickborne diseases are costing this country
billions a year but most of the epidemic is hidden because of misdiagnosis.

People who are not diagnosed and treated properly become chronically ill
and are as disabled as people with congestive heart disease.

HR 741 establishes a Tick-Borne Diseases Advisory Committee and calls
for improvements in three broad categories – diagnostic tests,
surveillance; prevention – and for clinical outcomes research. The bill
authorizes an additional $100 million over five years to accomplish
these activities.

Please ask Chairman Pallone for a hearing on HR 741. Lyme disease is a
nationwide health problem that needs and deserves serious efforts to
contain it and prevent it. Over 90 Lyme disease patient groups support
this bill.

Sincerely yours,

- -

First # is phone, second is FAX. Call and speak to the health aide or
even better, fax a letter.

*Majority Members (Democrats)*

Frank Pallone, Jr. (D-NJ) [Chairman] 202-225-4671; 202-225-9665
Henry A. Waxman (D-CA) 202-225-3976; 202-225-4099
Edolphus Towns (D-NY) 202-225-5936; 202-225-1018
Bart Gordon (D-TN) 202-225-4231; 202-225-6887
Anna G. Eshoo (D-CA) 202-225-8104; 202-225-8890
Gene Green (D-TX) 202-225-1688; 202-225-9903
Diana DeGette (D-CO) 202-225-4431; 202-225-5657
Lois Capps (D-CA) 202-225-3601; 202-225-5632
Thomas H. Allen (D-ME) 202-225-6116; 202-225-5590
Tammy Baldwin (D-WI) 202-225-2906; 202-225-6942
Eliot L. Engel (D-NY) 202-225-2464; 202-225-5513
Janice Schakowsky (D-IL) 202-225-2111; 202-226-6890
Hilda A. Solis (D-CA) 202-225-5464; 202-225-5467
Michael A. Ross (D-AR) 202-225-3772; 202-225-1314
Darlene Hooley (D-OR) 202-225-5711; 202-225-5699
Anthony Weiner (D-NY) 202-225-6616; 202-226-7253
James D. Matheson (D-UT) 202-225-3011; 202-225-5638

*Minority Members (Republicans)*

Nathan Deal (R-GA) [Rankiing Member] 202-225-5211; 202-225-8272
Ralph M. Hall (R-TX) 202-225-6673; 202-225-3332
Barbara Cubin (R-WY) 202-225-2311; 202-225-3057
Heather A. Wilson (R-NM) 202-225-6316; 202-225-4975
John B. Shadegg (R-AZ) 202-225-3361; 202-225-3462
Stephen E. Buyer (R-IN) 202-225-5037; 202-225-2267
Joseph R. Pitts (R-PA) 202-225-2411; 202-225-2013
Mike Ferguson (R-NJ) 202-225-5361; 202-225-9460
Mike Rogers (R-MI) 202-225-4872; 202-225-5820
Sue Myrick (R-NC) 202-225-1976; 202-225-3389
John Sullivan (R-OK) 202-225-2211; 202-225-9187
Tim Murphy (R-PA) 202-225-2301; 202-225-1844
Michael Burgess (R-TX) 202-225-7772; 202-225-2919
Marsha Blackburn (R-TN) 202-225-2811; 202-225-3004


__._,_.___
The mission of LymeInfo is to keep you informed of issues that might be of interest to Lyme disease patients. Postings are not meant to imply that we agree with the content of all items we distribute.

For Lyme information, see:
http://www.LymeInfo.net