Antibodies linked to long-term Lyme symptoms

Thanks to Nature News and the author for this great article! This is great news for many of us suffering from Chronic Lyme Disease.

Be Well,

Richard

Amy Maxmen

Ticks spread the bacterium behind Lyme disease - but symptoms can persist even when the bug seems to have gone.Medical-on-Line/Alamy

Some patients with Lyme disease still show symptoms long after their treatment has finished. Now proteins have been discovered that set these people apart from those who are easily cured.

People who experience the symptoms of Lyme disease, which include fatigue, soreness and memory or concentration loss, after treatment for the disorder are sometimes diagnosed as having chronic Lyme disease or post-Lyme disease syndrome. But these diagnoses are difficult to make, because the individuals no longer seem to harbour the bacteria that cause Lyme disease. And the symptoms could instead be indicative of chronic fatigue syndrome or depression.

Now Armin Alaedini at Weill Cornell Medical College in New York and his colleagues have found that patients diagnosed with post-Lyme disease syndrome have antibodies that suggest they carried the infection for an unusually long time. The finding, published in Clinical Immunology¹, might help the syndrome to be better understood, diagnosed and treated.

Alaedini's team looked at antibodies made in response to a protein called VlsE, which is found on the surface of Borrelia burgdorferi, the tick-borne bacterium that causes Lyme disease.

The antibodies recognize a snippet of the protein called an epitope, and recruit the immune system to attack the bacterium. The researchers found that post-Lyme sufferers have a greater variety of antibodies to this epitope than patients whose infection cleared up quickly.

This finding suggests that patients with chronic symptoms have experienced a prolonged infection, caused by microbes that have evaded the immune system by varying the epitopes they carry. As a result of these variations, the body makes new antibodies targeting the modified protein. The longer the microbe manages to keep changing, the more diverse its host's antibodies become.

Some post-Lyme sufferers had varied antibodies against VlsE epitopes despite being diagnosed and treated early, says Alaedini. "That could mean they naturally have a different antibody response to the infection than most people; it could mean they weren't treated properly; or it's possible they were reinfected and the second infection was never treated," he says.

Inflammatory role

"This is the first study I've seen that shows some immunologic difference between someone who resolves their Lyme and someone who develops post-Lyme disease syndrome," says Linda Bockenstedt, a rheumatologist and immunologist at Yale School of Medicine in New Haven, Connecticut.

The presence of varied antibodies hints that the chronic symptoms could be caused by an ongoing inflammatory response caused by antibodies mistakenly reacting to the body's own proteins, Bockenstedt suggests.

"The big question to me is whether this can lead to an autoimmune phenomenon," says Bockenstedt. "But if that were the case, I'd expect the disease to worsen without immune-modulating treatment, and it doesn't."

Alaedini suggests that higher levels of antibodies could increase the body's levels of cytokines, immune-system proteins that can trigger the symptoms experienced by patients with post-Lyme disease syndrome. "Various cytokine profiles have been associated with fatigue, anxiety and depression," he explains.

If these antibodies are unique to people with chronic Lyme disease, it could lead to a test and treatments for the disorder, Alaedini says. It could also guide treatment of the disease itself. "If patients with an acute infection develop antibodies to these epitopes, perhaps they require a more aggressive course of therapy," he adds.

But a predictive marker won't be useful without new therapies for the persistent symptoms, says Henry Feder Jr, a physician specializing in infectious diseases at the University of Connecticut Health Center in Farmington. If an immune response problem leads to the syndrome, antibiotics won't help. "I guarantee you that if you tell a patient they won't feel better after antibiotics, they won't," Feder says. "We need to know what's going on."

• References

  1. Chandra A. et al. Clin. Immunol. http://dx.doi.org/10.1016/j.clim.2011.06.005 (2011).

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.

Dr. Jernigan's Blog Article

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.

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

By Patty Fisher

pfisher@mercurynews.com

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 )

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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

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treatment he needed.

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.

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

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

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

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.

Yet another familiar story

Hi everyone,

Thought you would enjoy this article from the Wichita Eagle.

Be well,

Richard




Posted on Mon, May. 10, 2010
Symptoms make Lyme disease difficult to diagnose
BY HURST LAVIANA
The Wichita Eagle

Bob Reichenberger was perfectly healthy last June when he drove to a pasture near Andale to adjust the sights on two rifles. "I'm an athlete," he said. "I work out. I eat good food. I don't drink. I don't smoke. I've never had any health problems."

Reichenberger didn't worry about the two ticks that bit him that day.

"I felt one crawl up my neck," he said. "I pinched it in half and threw it out the window. Later that night I pulled one off my head."

Reichenberger, a detective on the Wichita Police Department's gang investigations unit, said he was used to chasing down 20-year-old gang members. But over the next several months, he was debilitated by one of the tick bites.

He spent a week at Wesley Medical Center, missed two months of work, began experiencing paralysis and watched his weight drop from 175 to 140 pounds — all without knowing the cause of his mysterious and painful illness.

In December, when he finally was diagnosed with Lyme disease, he began what has been a long and slow recovery from an illness that's not often discussed in Kansas.

"It's a physically and emotionally devastating disease," he said.

Prime time for Lyme

Reichenberger said he was happy to share his story during what has been designated as national Lyme Disease Awareness Month.

As warm weather brings people outdoors, health officials say, May is a good time to learn about tick-borne diseases and how to take precautions to protect pets and yourself from them.

Janice McCoy, health protection coordinator for the Sedgwick County Health Department, said April through September are the prime months for tick-borne disease in Kansas.

She said there were 18 suspected cases of Lyme disease reported last year in Sedgwick County, and four suspected cases of Rocky Mountain Spotted Fever, which also is spread by infected ticks.

"If not treated by antibiotics, they can cause long-term problems," she said.

The bite of a Lyme-infected tick often leaves a distinctive bull's-eye rash that can grow to 12 inches in diameter.

"That is generally the first sign of infection," McCoy said.

For the 20 to 30 percent of Lyme patients who don't get the rash, she said, diagnosing the disease can be tricky.

From three to 30 days after the bite of an infected tick, she said, a victim begins to exhibit symptoms that mimic many other diseases — fatigue, chills, fever and muscle pains.

"The best thing you can do if you think you have been bit by a tick and have the symptoms, is to see a physician,'' she said.

Kansas state epidemiologist Charlie Hunt said there were 16 confirmed cases of Lyme disease statewide in 2008, the last year for which figures are available. Cases are confirmed after two lab tests come back positive.

Three of the confirmed 2008 cases were in Sedgwick County, while four each were reported in Reno and Johnson counties.

"It's been a reportable disease here for many years," Hunt said. "The organism has been identified in Kansas. It's just not as thick as it is in the northeast.

"We know physicians are looking for it."

Difficult diagnosis

Reichenberger said neither he nor his doctor suspected Lyme disease when he first started experiencing symptoms — muscle spasms and pain in his feet and lower calves — about a month after the tick bite. If he developed the bull's-eye rash, he said, it was probably under his hair and he didn't notice it.

Over the next several weeks, Reichenberger said, the pain spread steadily throughout his body. Eventually, he said, he felt like knives were stuck between the vertebrae of his spine. He said he felt excruciating pain in every muscle in his body.

He was unable to sleep, he said, and prescribed pain medications offered no relief.

In November, after nearly collapsing at work, he was admitted to Wesley. While in the hospital, he said, doctors took blood tests and did an MRI of his brain.

"I had all kinds of doctors looking at me," Reichenberger said. "They just couldn't quite figure out what the problem was."

One doctor suggested that he might have post-traumatic stress syndrome after working 17 years as a police officer. Another diagnosed him with fibromyalgia.

"One of them thought I had Lou Gehrig's disease," Reichenberger said. "Others just flat out said, 'We can't find anything physically wrong with you. You need to see a psychiatrist.' "

After Reichenberger returned home, he and his wife began researching his symptoms, and they began to suspect Lyme disease. But initial tests to determine whether he had the disease were negative, he said.

In December, as he began to fear his disease would prove fatal, he made an appointment with a Missouri doctor who specializes in Lyme disease.

"He immediately diagnosed me as having all indications of Lyme disease," Reichenberger said.

He said tests performed at a California lab were positive for the disease. He said the pain continued during his first month of treatment, but that by February he began to show signs of improvement.

"I still have a few glitches here and there," he said. "But I'm strong again, and I'm pain free.

"I feel like I came back from dead."

Reichenberger said those seeking more information about Lyme disease can visit www.lymenet.org or www.turnthecorner.org.
Reach Hurst Laviana at 316-268-6499 or hlaviana@wichitaeagle.com.

© 2010 Wichita Eagle and wire service sources. All Rights Reserved. http://www.kansas.com

Read more: http://www.kansas.com/2010/05/10/v-print/1306879/symptoms-make-lyme-disease-difficult.html#ixzz0nhGpaLHK

ISDA has again showed extreme ignorance!

Hello friends,

I have to again report that the ISDA leadership has shown extreme ignorance in regard to the long term treatment of Lyme patients with antibiotics. I reference to you the Under Our Skin Blog at http://underourskin.com/blog/?p=738 concerning this matter. Jordan Smith, the park ranger featured in the film has written the ISDA a letter announcing his displeasure with the stance taken by this group again. This group continues to prove it is biased against current testimonies of Lyme patients. I have copied the text of Jordan's letter for you to read below:


Begin Quote


To the Infectious Diseases Society of America:

Almost twelve years ago, I was bitten by a tick at work, and contracted Lyme Disease and Babesiosis. Because of the job you’ve done at diminishing the perception of danger about tick-borne disease and pressuring doctors who treat it aggressively out of business, it took a year and a half and a nationwide search to find a doctor who would treat me.

By then I was dreadfully ill, and as a result I lost my job and my 21-year career. In my first year of antibiotic treatment I got worse. I pursued aggressive treatment for another six years, during which time I got steadily, if slowly better. During this time one of my two doctors was forced out of practice as a result of your work. Thanks to my heroic physicians, I am recovered after a nine-year battle with tick-borne disease. And I am now contributing to society, working, and raising my kids.

Your ineffectiveness and the extent of your compromise with the insurance and HMO businesses are noted. You and your work will be forgotten eventually, as we have forgotten the names of the opponents of Copernicus. Shame on you for the suffering you are causing on the way to your eventual obscurity as prideful scientists who called it tragically wrong. The monument to your life’s work is an unchecked epidemic.

—Jordan Fisher Smith, recovered victim of tick-borne disease

End Quote


Join Jordan and write your letter to the ISDA

Be well,

Richard

New Tick Carrying Disease!

Hi my friends,
I am sorry to have not posted any new material for a few weeks. My wife had a knee replacement surgery and I have been busy attending to her needs. I am posting an article that you will want to read. Scientists believe there is a new disease caused by ticks. I hope you find it informative. Thanks go to the Wbkt.com folks for the info.

Be well,
Richard


Begin Quote:

Scientists Worry About New Tick-Carrying Disease
Posted: Apr 20, 2010 4:40 PM MDT Updated: Apr 20, 2010 6:07 PM MDT
Communic8
Submit More Information
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Reported by Kristen Elicerio
Email: kelicerio@wkbt.com

Tick season is here. This year, in addition to the commonly known lyme disease, area scientists are concerned about a newer, more severe one.

It's a bacterial infection called anaplasmosis. It's something that attacks a human's central nervous system.

A tick is a host of anaplasmosis just like they are of the familiar lyme disease. When they bite the disease is transferred.

Symptoms of lyme disease are gradual, beginning with a rash or muscle ache. Symptoms of anaplasmosis are a little more severe, starting with an intense headache that quickly gets worse.

Because ticks can carry both diseases, prevention for both is following common tips that many are already aware of.

"Wearing long pants. Making sure that you have white socks on, because then when you lift up your pants and look at your socks you can see anything like a tick or any other hitchhiker," said Stephanie Hanna, Conservation and Education Manager of Myrick Hixon Ecopark.

Experts say spraying large areas for ticks is not very effective, but that spraying yourself for protection is. To keep ticks away they recommend a bug spray with at least a 30 percent concentration of DEET.
If you do happen to get a tick bite, there is a proper way to remove them.
"The secret to it is to try to dig it out. And not to get the body part, but to get as close into the mouth part as you can, clamp it well and pull it out," said Dave Geske, Vector Control Manager for La Crosse County.

Ticks can sense the movement of humans and other large animals from about six to 12 feet away. If a tick is still roaming around when you find it, it hasn't latched on yet, and you just need to remove it from your skin.

Area scientists will be conducting studies this summer to learn more about anaplasmosis and determine exactly in what areas ticks are carriers of the disease.

End Quote

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.

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

More Lyme disease controversy

Hello friends,

For those of us who have Lyme disease, the controversy concerning the use of long term antibiotics to treat us is very important. Here is another article that explains these current issues. Thanks to our friends at New Hampshire Public Radio and especially to Elaine Grant!
I hope everyone will get involved in their respective communities to voice their experiences with this issue.

Be well,
Richard

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Lyme Disease Controversy Comes to the Capitol

By Elaine Grant

Created 02/01/2010 - 17:47

Teaser:

Lyme patients say whether doctors feel free to treat them as they wish is a life or death problem. Some scientists disagree.

Synopsis:

One of the most vitriolic debates in medicine has come to the State House.
Desperate Lyme Disease patients say they are fighting for their lives.
They say doctors who treat their illness with long-term antibiotics are persecuted by the medical establishment.
They want lawmakers to pass legislation that they say will free doctors to treat Lyme Disease as they see fit.
On the other side are doctors equally convinced that long-term antibiotics are both ineffective and dangerous.
NHPR health reporter Elaine Grant has more.

Transcript:

For years, patients suffering from a host of symptoms that they call chronic Lyme Disease have said they encounter difficulty getting treated appropriately.

With its so-called “bucket of symptoms” that mimic numerous other ailments, Lyme Disease can be tough to diagnose.

And for a variety of political reasons, it can be even harder to treat.

Consider the case of Cathy Kettman, a fifty-six year old mother of four from Bow.

Several years ago, she went to the hospital with chest pains – but tests showed no heart disease.

She developed numerous other symptoms, and for five years she searched for a diagnosis.

Cathy Kettman: They sent me to neurologists, endocrinologists, rheumatologists, they sent me to Dartmouth, they sent me back and forth for nine months to Brigham and Women’s looking for a tumor, they were trying to rule out MS and lupus.”

At one point, she was so crippled that her husband had to carry her to the bathroom.

When they asked her family doctor to test her for Lyme Disease, the doctor refused to treat her.

Finally, a doctor in Maine diagnosed her with chronic Lyme.

And that’s the first point of contention in the debate over how to treat these patients.

At issue in the scientific community is the question of whether or not long-term, or chronic, Lyme Disease actually exists.

The Infectious Disease Society of America is a group of 8,000 doctors that sets the generally accepted medical standards for about 50 infectious diseases.

The IDSA says there’s no such thing as chronic Lyme.

Here’s retired Concord doctor Susan Savateer representing the group, testifying before the House Health and Human Services Committee.

Dr. Susan Savateer: “As physicians, we have to be very careful not to give patients a diagnosis of LD unless they meet clinical criteria. Patients with chronic symptoms, mostly subjective, musculoskeletal pain, fatigue, memory deficits, these are common symptoms in our society.”

The Centers for Disease Control generally agrees with the IDSA.

And both groups say there is no benefit – and a great deal of potential harm -- to treating patients with antibiotics for longer than four weeks.

Dr. Paul Mead is an epidemiology chief at the CDC.

Dr. Paul Mead: “The National institutes of Health sponsored several studies to evaluate, well, do antibiotics make these people better? And the answer was, not more so than placebo.”

Furthermore, Mead says, both the antibiotics and long-term use of intravenous drugs can cause a number of serious illnesses and even death.

And doctors who subscribe to the IDSA position say over-diagnosing persistent Lyme can lead them to miss other serious illnesses.

Patients could not disagree more vehemently.

The International Lyme and Associated Diseases Society directly opposes the IDSA.

ILADS says science shows that chronic Lyme is real and that long-term therapy can help.

But advocates say that, in the medical world, IDSA reigns supreme –and that causes doctors to fear following alternative guidelines.

They point to situations like that encountered by Kevin Young, a primary care physician in Plymouth.

Years ago, Young’s daughter came down with a mysterious illness.

She suffered from a variety of neurological problems including intermittent blindness, seizures, and cognitive problems.

Dr. Kevin Young: Over the next two years, she went from being honors English in high school to being unable to comprehend a newspaper article.”

Young sought help from specialists.

Dr. Kevin Young: “No one could explain her problem. During that time, I did follow IDSA guidelines. It was a scary time.”

Finally he gave his daughter antibiotics – for nine and a half years.
Today, he says she’s well.

But his treatment choice came at a professional price.

Dr. Kevin Young: A neurologist who saw my daughter not only questioned my medical judgment, but also threatened to report me for child abuse. He said due to our professional relationship over many years, he would not do that, but that does dramatize the conflict within the medical community.”

The conflict has become so nasty over the last two decades, advocates say, that doctors in many states, including New Hampshire, are afraid to treat Lyme patients.

Representative Gary Daniels: “This has had a chilling effect on the number of Lyme literate physicans who are trained or willing to treat Lyme patients…Many of our state residents are forced to travel beyond our state borders to find the treatment that they need.”

That’s State Representative Gary Daniels, a Republican from Milford.

He says doctors in other states have been prosecuted by medical boards for prescribing long-term antibiotics.

And although it’s never happened in New Hampshire, Daniels wants to make sure it won’t.

He’s sponsored a bill to protect doctors from prosecution by the Board of Medicine should they choose long-term treatment.

The New Hampshire Medical Society opposes the bill, saying physicians are already free to treat as they wish.

Lawmakers also question whether any other illness has received exemptions from medical oversight.

In response, advocates say the scientific community views Lyme differently.

And that has broader implications.

Pat Smith is president of the Lyme Disease Association.

Pat Smith: “We actually have cases where insurers have not paid for medical treatments due to the IDSA guidelines. We have cases where pharmacies have stopped giving patients their medicines because of the IDSA standards.”

Further complicating an already thorny issue is the question of the IDSA’s integrity.

Last year, Connecticut Attorney General Richard Blumenthal settled an anti-trust case against the IDSA.

According to court documents, the IDSA Lyme review panel was found to have conflicts of interest, including ties to drug and insurance companies.

The IDSA is reviewing its guidelines, but no major changes are expected.

Legislation virtually identical to New Hampshire’s passed unanimously in Connecticut last year.

Similar bills are pending in Massachusetts, Minnesota, and Virginia.

With 92 cases per 100,000 people, New Hampshire has the highest reported incidence of Lyme Disease in the country.

For NHPR News, I’m Elaine Grant.

Audio file:

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