LymeBlog

CNN News: 10-year battle with pain highlights Lyme disease debate

10-year battle with pain highlights Lyme disease debate
CNN News
By Ronni Berke, CNN

Story Highlights

* Mandy Hughes says she suffered from Lyme disease effects for more than 10 years

* Hughes featured in documentary that questions disease treatment guidelines

* There's a debate over whether the disease symptoms are mistaken for the disease

NEW YORK -- For more than 10 years, Mandy Hughes drifted in an out of what she calls the horrible, debilitating pain of Lyme disease.

"It literally feels like you got into a severe accident, like you were hit by a Mack truck and you were allowed no medical attention," she says.

After being bitten by a tick at 19, Hughes broke out in hives and suffered fever and chills so severe that she had to be hospitalized. She was diagnosed with Lyme disease and was sent home with two weeks' worth of the antibiotic tetracycline. She seemed to be cured.

Photo: CNN

Mandy Hughes says the pain she suffered for more than 10 years was due to Lyme disease

But over the years, the Lyme symptoms flared back -- crippling joint pain, muscle spasms, headaches and facial paralysis. She visited 15 doctors, yet they were unable to arrive at a diagnosis. Several thought she had multiple sclerosis. Others knew she was sick but didn't know why. Lyme had been ruled out.

"Maybe it's psychological -- we don't really have an explanation," they told Hughes. "Your tests are coming back fine, Mandy." Watch a report on a 10-year battle with Lyme disease symptoms »

The memory of one doctor's visit stays with her to this day. She went to see him with joint pain so severe, she said, her hands were curled into a palsy-like position. Yet the doctor seemed impatient with her.

"You're obviously an attractive woman, and you're just trying to get attention," she recalls him saying.

In 2005, Hughes went to see what some patients refer to as a "Lyme-literate" doctor -- one willing to diagnose chronic Lyme disease and prescribe a long-term regimen of intravenous as well as oral antibiotics.

Within three months, she began to feel better. After 15 months, she was ...

Discovery Of Lyme Disease Bug Clone May Explain Disease Spread

LymeBlog News
Lexington, KY USA
By LymeBlog News Staff

Benjamin Luft, M.D., Professor of Medicine, Stony Brook University Medical Center, and colleagues discovered that a certain clone of Borrelia burgdorferi, the spirochete that causes Lyme disease, appears to be the most common strain causing Lyme disease in North America and Europe, and may account for the increase in cases for the past 20 years. Their investigation and findings of the ospC-A clone are reported in the July 2008 issue of Emerging Infectious Diseases, which is currently available on line at http://www.cdc.gov/ncidod/eid/upcoming.htm.

Photo: stonybrook.edu

Benjamin Luft,M.D.

According to Dr. Luft, Lyme disease is the most common vector-borne disease in the United States with more than 20,000 cases reported annually. While B. burgdorferi is the primary pathogen in the United States, clones of the pathogen are known to cause major disease. The ospC-A clone was one of the first strains ever identified.

In “Wide Distribution of a High-Virulence Borrelia burgdorferi Clone in Europe and North America,” Dr. Luft and colleagues detail various methods of genetic testing of 68 B. burgdorferi isolates from Europe and North America. Based on the findings of their tests, the researchers concluded that the ospC-A clone dispersed rapidly and widely in the recent past and in both regions of the world.

“I believe this discovery will make an important contribution since it identifies an identical and high virulence clone of Borrelia in both Europe and North America,” said Dr. Luft. “This may explain the recent spread of Lyme disease in North America.”

The researchers report that the isolates of the clone were prevalent on both continents and uniform in DNA sequences, which suggests a recent trans-oceanic migration. More specifically, they ...

Grass-roots campaign seeks to aid Ojai man

Grass-roots campaign seeks to aid Ojai man
Ventura County Star - Camarillo,CA,USA
By Amy Bentley, Ventura County Star Correspondent

During a recent heat wave when the temperature in Ojai topped 100 degrees, Mike Rubalcava visited his friend Gavin Peters and was bothered by what he saw.

Peters, 32, suffers from muscular weakness and other symptoms from chronic Lyme disease — and the heat makes him weaker.

"When it's above 85, I'm just zapped," said Peters, a former professional skateboarder who now uses a wheelchair.

Three years ago, Peters moved from San Diego to his childhood home in Ojai so that his retired parents, Bill and Maureen Peters, could help take care of him. The only problem is their home was built in the 1950s without air conditioning.

Rubalcava could see that with Ojai's boiling weather just around the corner, Peters was facing months of suffering. His parents were considering getting a loan for air conditioning. Rubalcava decided to act. He began a grass-roots campaign to raise funds to have air conditioning installed in the Peters' home as soon as possible.

Photo: Gavin Peters

Gavin Peters at home.

Photo: Gavin Peters

"I've learned not to be stupid enough to predict the future. It's life; you've got to take it as it comes," says Gavin Peters, who suffers from symptoms of chronic Lyme disease.

"I said, This is crazy.' I know too many people who care and can help," said Rubalcava, a film editor from Ojai. He and stepdad Rich Handley have so far collected funds and pledges totaling $10,000 to $11,000, enough to remove asbestos from the home and have a new heating and cooling system installed. The asbestos work has been done, and the rest of the work will proceed as the funds that were pledged come in, Rubalcava said.

They are seeking donations from individuals, contractors and businesses to help renovate a bathroom to be wheelchair accessible for Peters, who is prone to falling, and, if possible, have solar panels installed to cut energy bills.

"We're not going to stop. There are a lot of people helping," said Rubalcava, who credits "viral e-mail" with spreading the word.

Peters and his friends also want to raise awareness about Lyme disease and the need to be checked by a doctor immediately if you are bitten by ...

ABC News - Misdiagnosis: Lyme Disease Dangers

Misdiagnosis: Lyme Disease Dangers
ABC News - USA
By CINDY L. SMITH, DAVID MUIR and EMILY YACUS

New Documentary Explores Pros and Cons of Long-Term Medications

Bottom Line: If Something Is Not Right, Trust Your Health Radar as You Know Best

Just because medical science doesn't have the answer that doesn't mean you don't have a problem or it's all in your head.

The Fourth of July means we're in full summer swing, but that also means it's prime time for Lyme disease — the painful, debilitating infection spread by ticks. The Centers for Disease Control has reported more than 20,000 people get the disease every year, and the numbers are rising.

Photo: Getty Images

With warmer winters, deer ticks can reproduce more frequently and transmit the bacteria that cause Lyme disease. A lack of natural predators that normally hunt deer, such as wolves and mountain lions, also allows deer to flourish.

An emotionally charged new documentary titled "Under Our Skin" looks at sufferers of chronic Lyme disease, a painful condition at the center of a heated medical debate.

The symptoms are various. One Lyme disease sufferer showcased in the documentary likened the pain to "being all tied up like a mummy, so you can't move anything, and tape across your mouth so you can't say anything."

Ben is a baseball player whose hands shake uncontrollably. He describes how the disease changed his life: "I went from being a gifted athlete to, you know, times where it was hard to put a shirt on."

A young girl named Mandy describes her mental state as confused, but that "doctors said there was nothing wrong with me. I was just making it all up."

Most cases of Lyme disease can be treated easily with a short course of antibiotics, but for some, persistent symptoms are challenging conventional medical wisdom.

Chronic fatigue syndrome. Lupus. Fibromyalgia. Amyotrophic lateral sclerosis (ALS). Multiple sclerosis. These are some of the diagnoses that the subjects of "Under Our Skin" say doctors have incorrectly placed on them. And sometimes they receive no diagnosis at all.

One patient was told, "There's no medicine for you. You're an attractive girl. You don't feel like you're getting enough attention."

Patients like these say they are suffering from an ongoing Lyme infection, but various doctor groups hotly contest whether "chronic" Lyme disease actually exists. They are at odds over the scientific evidence.

Lyme disease, if treated early, can be cured with antibiotics. Usually a 10-to-28-day course of medicine will cure up to 95 percent of people within a few weeks. But it can progress to arthritis, meningitis, nerve and heart damage, and other chronic problems if not treated soon enough.

Dr. Gary Wormser, chief of infectious diseases at New York Medical College, told Newsday that ...

Lyme Disease Bug Came From Europe Before Ice Age

European roots of Lyme disease bug revealed
Welcome Trust

Researchers at the University of Bath have discovered that a bacterium that causes Lyme disease originated in Europe, rather than in North America as previously thought.

The bacterium responsible for Lyme disease, Borrelia burgdorferi, originated in America, or so researchers thought. Now, however, a team from the University of Bath has shown that this bug in fact came from Europe, originating from before the Ice Age.

By understanding the origins of the bacterium and how it has evolved so far researchers hope to be able to predict how it will continue to develop, and so find ways to prevent its spread.

Photo: CDC/ James Gathany; William Nicholson

The blacklegged tick Ixodes pacificus, a known vector for Borrelia burgdorferi, the pathogen responsible for Lyme disease

In the study, researchers from the University of Bath and colleagues from the UK and USA studied the evolutionary history of the bacteria by looking at the sequences of eight so-called 'housekeeping genes', which evolve very slowly. They analysed 64 different samples taken from infected humans and ticks in Europe and America.

In all, 33 different combinations of the housekeeping genes were found. The study's findings appear to show that Borrelia burgdorferi originated in Europe but that the species has been present in North America for a long time. The researchers suggest its re-emergence there in the 1970s occurred after the geographic territory of the tick that carries the bacteria expanded, for example through the restoration of woodland.

Lyme disease is a growing problem in Europe, Asia and - in particular - North America, where it is now the most common vector-borne disease. The disease was named after Old Lyme, Connecticut, the site of a number of cases in the 1970s. There is no vaccine for the infection, which can cause arthritis and problems with the nervous system and heart if left untreated.

Lyme disease to be featured on ABC's Good Morning America Thursday

LymeBlog News
Lexington, KY USA
By LymeBlog News Staff

According to an announcement from Dr. Robert C. Bransfield, the ABC network show in the USA, Good Morning America, will be showing a news story on the Lyme disease controversy Thursday morning, July 3, 2008 between 7:30 and 8:30 AM EST.

Over the past few years the ABC network has carried a number of stories about Lyme disease including stories about affiliate reporters Noreen Turyn in Lynchburg, VA and Brooke Landau in San Diego, CA.

This most recent interest in Lyme disease coverage by ABC News seems to have been spurred by the recent release of the movie "Under Our Skin" and the release of the book "Cure Unknown: Inside the Lyme Epidemic" (St. Martin's Press) by science journalist Pamela Weintraub.

An interview with Dr. Bransfield was recorded by ABC earlier this week for the segment on Thursday.

Protect yourself from internet scams and quacks

Protect yourself from internet scams and quacks
Strong Health Magazine
By Tony Mobily

Unfortunately, several diseases out there still don’t have a cure. Most of them have symptoms which will affect people’s lives to a certain (sometimes extreme) degree. Some of them can be very annoying, crippling, or simply terrifying. Some of them, for example, are sarcoidosis, tinnitus, genital and oral herpes, asthma, myasthenia gravis, menopause, and so on. People with such conditions are especially vulnerable and more willing to be gullible, since they often feel that the medical world “fails them”.

Photo: lymediseasecured.com

60 Year Old Swinger Reveals

The Internet made available an amazing wealth of information about those conditions. However, a lot of people out there are in for the quick buck, at the expenses of those exhausted sufferers who are sometimes willing to believe anything.

This article will give you simple advice which will help to make it easy to find out if the information you are reading on the Internet is genuine or not.

Google is your friend

Google is a fantastic search engine. Unfortunately, it works well for everybody—including for those people who tend to provide information on “magic cures” for $19.95. On the other hand, Google is your best weapon to understand if you really can trust the information you find online. Google won’t decide for you. However, it will give you a chance to make an informed decision.

So, here is how to use Google as a weapon against untrustworthy sites.

Technique #1: text fingerprinting

Suppose you have genital herpes, and you find this site: http://www.genitalherpescured.com/. While the site doesn’t look extremely professional, it does give anybody with herpes at least some hope. Suppose that you want to find out if the site is genuine or not. The first step is to look for a sentence in the site’s content that is very unlikely to be in other sites out there.

In this case, I will take the sentence “60 Year Old Swinger Reveals”. This will be your “fingerprint”: something that distinguishes this particular page from others online.

Search this sentence in Google. It’s absolutely crucial that you search it with the speech marks around it.

Google fingerprinting in action

The results for “60 Year Old Swinger Reveals”
are shown in this figure:

Here are the sites:

http://www.genitalherpescured.com/
http://sclerodermadefeated.com/
http://ganglioncystcure.com/
http://www.laryngitiscured.com/

Clicking on those sites will give you a very strong deja-vu effect: they all seem extremely similar, based on the same template. More disturbingly, the woman in the photo (who is supposed to be the author of the document) seems to change her name from one template to the other:

Photo: ganglioncystcure.com
Here she is Amy Archer…

Photo: sclerodermadefeated.com
…and here she is Maria Menendez!

Once you have found more sites, you can use other parts of the documents (which seem to stay the same) as your next fingerprint. For example, you could take “you are about to Learn the easy 3 Step” as your next fingerprint, and find:

http://www.hivescure.com/

From there, you will notice that the text at the top has changed: it now has “Sex Crazed 60 Year Old Reveals” etc. Using that as your fingerprint will reveal more sites:

http://www.lymediseasecured.com/
http://www.anemiadefeated.com/
http://www.menopausedefeated.com/

The list goes on and on. They all look incredibly alike, and there seem to be one of them for each annoying and hard-to-treat condition. This is a semi-complete list for ...

Book details family's struggle with Lyme disease

Book details family's struggle with Lyme disease
Austin American-Statesman
By Susan Morse, The Washington Post

In the war of information on Lyme disease, patient activist groups have started from a marked disadvantage to the medical establishment in terms of visibility and credibility. That might be changing, and science journalist Pamela Weintraub's new book, "Cure Unknown: Inside the Lyme Epidemic" (St. Martin's Press), could be one reason.

Weintraub, a senior editor at Discover magazine, uses her family's protracted Lyme odyssey as the jumping off point for an exploration into the history, politics and, predominantly, the patient experience of the tick-borne disease.

In 1993 Weintraub and her family moved to woodsy Chappaqua, N.Y. Soon after, she writes, she, her husband and their two sons all developed persistent fatigue and joint pain that worsened over time. The hardest hit was her older son, who took a medical leave from high school and saw a slew of specialists before one diagnosed Lyme disease in 2000. An infectious-disease expert confirmed the diagnosis, then challenged it later when the boy failed to respond to standard antibiotic treatment.

Other patients she interviewed described similar frustrations.

Weintraub explains what she considers the failings of commercial tests for Lyme and attacks the divisiveness in the medical community that she says interferes with finding better treatment.

Tick leaves more than a mark on Bay area girl

Tick leaves more than a mark on Bay area girl
WTSP - Tampa Bay's 10 News, Tampa, FL USA
By David Leonard,Tampa Bay's 10 News

Tampa, Florida - 21-year-old Skyler Pursifull can hardly remember a time when her body didn't ache.

"I remember being fouror five and my neck started hurting really ban and the doctor couldn't find anything wrong."

Photo: tampabays10.com

Skyler Pursifull - Click here to watch: Video Story

For 15 years, Pursifull says her joints felt like someone was searing them with a blow torch. Several years ago, she started to lose her memory and language comprehension. "There were times when my friends would talk to me and I couldn't even understand them," she says.

Doctors finally discovered she had Lyme disease, a bacterial infection passed on by ticks, specifically a small tick about the size of a pin known as a deer tick.

So small that Pursifull, and others, don't even realize when they have been bitten.

"If you miss it, it could be fifteen years down the road before you get treatment and get better," she says.

Preventing the disease is ...

Of suffering and sounds

LymeBlog News
Lexington, KY USA
By Glenroy Wolfsen, LymeBlog Staff

Poem featured today:
"The House of Suffering" and "Sounds"
By Glenroy Wolfsen

Second Thoughts is a column on LymeBlog News featuring poetry by Glenroy Wolfsen.

Lyme suffering has been different for me than any other kind of suffering. It is the most lonely suffering. So much of it happens "inside" where no one else sees.

It is the least understood suffering and it turns others away, even family members. It creates a special longing that makes it worse - the longing for just one person to come into that house with you and stay there to keep company and ease the solitary and endless pain.

The House of Suffering

The house of suffering is a lonely place
Confined, left out,
Shut in.

Life goes in and out of its gardens
Without us,
Sometimes picking a few flowers
For our doorstep
To remind us it is still there.

Maybe our souls, you and me,
Found each other on that doorstep
The day no more flowers came,

Glenroy Wolfsen

Second Thoughts: A column featuring poetry by Glenroy Wolfsen

Glenroy Wolfsen has lived a life filled with pain: of Lyme disease and the illnesses and losses of loved ones. But he has also experienced the profound pleasures of learning, teaching, music and academics.

Raised on a farm, yet schooled in music and religion (Master of Divinity) and with interests in religions, psychology, mind-body healing and Eastern Sacred Texts, Glenroy’s spirit shines through in his works of fine poetry and wise prose.

After regaining much of his health, Glenroy remains busy teaching, studying and writing several books: one about his life story, others with poetry. He is pleased to share some of his works with you in an ongoing basis here at Lymeblog.

Feel free to contact him at Secondthoughts@lymeblog.com

Maybe it wanted us

To become desperate enough -

Alone enough - lost enough -

Empty enough

To open the door.

Maybe we were invited to cross

The threshold together

By invisible hands

Born and raised by years

Of pain

And a few secret hopes

That were the last to die.

Maybe the house of suffering

Kept its rooms empty

So we could move in together -

You and I -

To build a fire of light

And warm flowing love only for two.

Maybe at the last hour

An arm of mercy swept us in

And closed the door forever.

Working most of my life as a musician, I am very sensitive to music and sounds, even tones of voice and intonations in speaking, or even peoples breathing or the quiet clues given in sleep. Being so long in silence and ...