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POSTED ON September 9th  - POSTED IN AbledConditions
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AbledConditions story headline shows a soft-lit photo of Linda Ronstadt with the headline: Parkinson's Disease: Linda Ronstadt - A legendary voice sings no more

 

Singer reveals a years-long battle with tick disease and Parkinson’s Disease

UPDATE: September 13: Linda Ronstadt – ABC World News Tonight Person of the Week

In an exclusive interview with ABC World News Tonight anchor Diane Sawyer, Linda Ronstadt reveals that she suspected she might have Parkinson’s Disease for the last 12 years. 

In her interview with AARP, Ronstadt said she had suffered from Lyme Disease after she was bitten by a tick that she got from one of her cows. Other persons with Parkinson’s, such as Michael J. Fox, have also reported suffering from Lyme Disease after a tick bite and going on to develop Parkinson’s Disease.

Ronstadt explains the effects Parkinson’s has had on her singing voice and why it’s now left her unable to sing in public. She displays her characteristic humor and a courage few people knew she possessed.

 

 

Linda Ronstadt has been one of the most distinctive voices in popular music, from her time fronting the Stone Ponys in the Sixties, through her solo successes in the following decades, including the phenomenal Trio albums with Dolly Parton and Emmylou Harris.

But now that voice has been silenced, at least when it comes to singing, because she has now revealed to the world that she has been diagnosed with Parkinson’s Disease. 

 

Photo of the cover of Linda Ronstadt's new autobiography 'Simple Dreams' published by Simon and Schuster and Free Press. Click here to buy the book at Amazon.com.The revelation isn’t contained in Ronstadt’s new autobiography Simple Dreams , (published by SImon and Schuster and Free Press), because the official diagnosis wasn’t confirmed until months after the final submissions for the book. You can click on the book’s cover photo to purchase it at Amazon.com.

 

From Wikipedia: ‘Parkinson’s Disease is a degenerative disorder of the central nervous system. The motor symptoms of Parkinson’s disease result from the death of dopamine-generating cells in the substantia nigra, a region of the midbrain; the cause of this cell death is unknown. Early in the course of the disease, the most obvious symptoms are movement-related; these include shakingrigidityslowness of movement and difficulty with walking and gait. Later, thinking and behavioral problems may arise, with dementia commonly occurring in the advanced stages of the disease, whereas depression is the most common psychiatric symptom. Other symptoms include sensory, sleep and emotional problems. Parkinson’s disease is more common in older people, with most cases occurring after age 50.

 

A montage of photos from Google Search shows the covers of some of Linda Ronstadt's albums.

A montage of some of Linda Ronstadt’s album covers from Google Search.

 

The AARP Interview with Linda Ronstadt

In a wide-ranging interview with AARP (American Association of Retired Persons) in advance of the coming release of her autobiography Simple Dreams, the notoriously private Ronstadt lifts the veil on her growing health challenges. And, despite the heartbreaking end to her singing career, she manages to face it with her characteristic sense of humor:

‘Though her book mentions that her voice began to change at age 50, Ronstadt, now 67, had never offered a solid explanation for her 2009 retirement (the book does cryptically mention a time when she had a “still-healthy voice”).

Ronstadt opens up about the life-altering news she did not put in her new book — she has Parkinson’s disease — and its tragic side effect: “I can’t sing a note.”

The winner of 11 Grammys during a 40-year career that produced more than 30 albums, Ronstadt recorded her final CD (Adieu, False Heart, with Cajun musician Ann Savoy) in 2006. Three years later — on Nov. 7, 2009 — she gave what she calls her last concert at the Brady Memorial Auditorium in San Antonio.

After that, Ronstadt simply declined all invitations to do more.

In late 2012, when a friend asked her to sing on a tribute album to Jackson Browne, a close friend from her L.A. days, she wrote in an email: “I have a serious case of being 66 years old and am completely retired from singing. Of course, one is always pleased to be asked, so tell them I said thank you.”

What old friends and fans did not know is that for the past seven or eight years, Ronstadt had suffered from symptoms that suggested Parkinson’s disease. Eight months ago, a medical diagnosis confirmed it. Never one to shy from a challenge, Ronstadt faces her disease with the determination to push for more and better treatments, both for herself and for other Parkinson’s patients. (For more about Parkinson’s disease, see the box on page 4.)

In the exchange that follows, Ronstadt assesses her career and explains how her Parkinson’s was detected.

Q: You wrote your “musical memoir,” Simple Dreams, entirely yourself. Was that difficult for you?

A: Well, I’d never written anything longer than a thank-you note before. I never kept a diary or a journal. But I’m a reader, and I can put a coherent sentence together, so I thought I could make it honest and clear.

Q: You talk in the book about your love for animals and your pet, Luna the cow.

A: Oh, Luna! Yeah, I loved her — she was such a nice old girl — but I got a tick from her, and that’s probably why I’m sick.

Q: You mean you have a tick disease now?

A: Well, I had two very bad tick bites in the ’80s, and my health has never recovered since then.

Q: Is that why we don’t see so much of you?

A: I can’t sing. I have Parkinson’s disease, which may be a result of that tick bite. They’re saying now they think there’s a relationship between tick bites and Parkinson’s disease — that a virus can switch on a gene, or cause neurodegeneration. So I can’t sing at all.

In fact I couldn’t sing for the last five or six years I appeared on stage, but I kept trying. I kept thinking, “What if I tried singing upside down? Or standing on my head? Or while juggling? [Laughs] Maybe I’d be able to sing better then.”

So I didn’t know why I couldn’t sing — all I knew was that it was muscular, or mechanical. Then, when I was diagnosed with Parkinson’s, I was finally given the reason. I now understand that no one can sing with Parkinson’s disease. No matter how hard you try. And in my case, I can’t sing a note.

Q: When were you diagnosed with Parkinson’s?

A: About eight months ago — just when I was writing the acknowledgments for the book, actually. I got the initial diagnosis, but they didn’t confirm it until six months later. I didn’t want to write about it in the book, because I wasn’t sure.

Q: You noticed the symptoms in your voice before anything else?

A: Yes, but it didn’t occur to me to go to a neurologist. I think I’ve had it for seven or eight years already, because I’ve had the symptoms that long. Then I had a shoulder operation, so I thought that must be why my hands were shaking. Parkinson’s is very hard to diagnose. So when I finally went to a neurologist and he said, “Oh, you have Parkinson’s disease,” I was completely shocked. I was totally surprised. I wouldn’t have suspected that in a million, billion years.’

Read the rest of the AARP interview with Linda Ronstadt

 

A photo shows Linda Ronstadt sitting on a bench in a changing room chatting with Linda McCartney while Paul McCartney plays a guitar riff for Peter Asher, Ronstadt's producer and former member of the 60's singing duo Peter and Gordon during the 1976 Wings Over America Tour.

Linda Ronstadt chats with Linda McCartney while Paul McCartney plays a guitar riff for Ronstadt’s producer Peter Asher in the backstage changing room during the 1976 Wings Over America tour. Asher was formerly one-half of the 60′s singing duo Peter and Gordon for whom McCartney wrote the song ‘World Without Love’.

 

In addition to her interview with Diane Sawyer, Linda also sat down with Robin Roberts on ABC’s Good Morning America to talk about her memoir Simple Dreams and her diagnosis with Parkinson’s Disease:

 

 

Could voice therapy help Linda Ronstadt to sing again?

The Internet has been all abuzz about Ronstadt’s interview and many people in the field of Parkinson’s treatment and therapy have expressed sadness at her declaration that she can’t sing anymore. Many have wondered if she has tried vocal or singing therapy.

Linda Ronstadt only hints at problems with the ‘mechanics’ and the muscles involved with singing, and for someone who has been blessed with one of the most naturally beautiful voices in contemporary music, it’s got to be incredibly frustrating for her. Not to mention her demands on pitch, tone, vibrato and other technical elements of singing would be incredibly high, given her professional pedigree. So her assertion that she can no longer ‘sing a note’ may well be true.

Marsha Kogut, MS, CCC-SLP, a speech pathologist at New York Institute of Technology’s Adele Smithers Parkinson’s Disease Treatment Center says most individuals with Parkinson’s disease exhibit symptoms of soft volume, hoarse and breathy vocal quality, monotone, imprecise articulation (perceived as mumbling) and other problems modifying their speech rates.

She says says individuals with Parkinson’s disease often find relief and success with certain intensive voice therapies.

Although Kogut is not familiar with the specifics of Ronstadt’s case and cannot speak directly on Ronstadt’s condition, she regularly treats individuals with Parkinson’s disease and has had favorable results, particularly with the use of the Lee Silverman Voice Treatment program, an exercise-based behavioral program with a focus on the speech motor system. Kogut and her colleagues work with patients at the center, part of NYIT’s College of Osteopathic Medicine. The center’s guiding concept is to provide comprehensive care to help people improve and maintain quality of life while living with Parkinson’s disease.

LSVT trains individuals to target loudness as a way to trigger improvement of all systems and generalize them to daily communication.”

As part of the therapy process, Kogut often uses singing exercises to enhance the vocal and respiratory mechanisms. She says these exercises can be therapeutic and are a fun way to enhance a tedious therapy session.

Ronstadt says she was diagnosed with Parkinson’s disease eight months ago but began to show symptoms eight years ago.

“The most important thing is to consult with a neurologist who specializes in movement disorders who will tailor the appropriate medications and strongly encourage the initiation of the rehabilitation process,” says Kogut. “Almost anyone can benefit from this program. Although there are some prognostic variables that may indicate that certain individuals may have better outcomes, speech therapy is an essential part of improving the communication process for Parkinson’s patients.”

Adds Kogut: “Individuals with impaired cognitive abilities can benefit from this program, which encourages patients to talk loudly. As a result of reduced amounts of the neuro transmitter dopamine in the brain, Parkinson’s patients have reduced movements in all parts of their body.

LSVT trains the individual’s brain to use the command “talk loud” and the vocal system will respond. Individuals with PD lose the automatic ability to talk loud – they have to command their body to do that. The individual learns to implement the talk loud command, use increased conscious effort, and take deep breaths, which results in family and friends being able to understand them once again.”

Kogut is a practising speech language pathologist since 1975, with expertise in working with the adult neurologically impaired population.

Source: NYIT Newsroom

 

AARP: Linda Ronstadt: New Parkinson’s Therapies May Help You To Sing

Even the AARP’s Blog contains opinions from others on whether voice and singing therapy might benefit Linda Ronstadt:

 

An excerpt from the AARP blog discusses whether new Parkinson's therapies could help Linda Ronstadt to sing again and includes a photo of the members of the Parkinson Voice Project in Dallas in performace while the accompanying text reads, “No one can sing with Parkinson’s disease. No matter how hard you try,” lamented legendary singer Linda Ronstadt, who was recently diagnosed with the condition. That may be true for Ronstadt, but speech pathologists and other Parkinson’s experts say there is enormous hope for most people.  “It made me very sad to hear her say that,” says Samantha Elandary, founder and CEO of the nonprofit therapy group Parkinson Voice Project in Dallas, which has helped patients to sing. “Twenty years ago, speech therapy didn’t work for Parkinson’s patients. But now we know that voice treatment does work, but it has to be a specific kind.”  Whether it could help someone of Ronstadt’s stature regain her full singing range is unclear, but vocal therapy “is very effective,” says neurologist Zoltan Mari, M.D., interim director of the Parkinson’s Disease and Movement Disorders Center at Johns Hopkins University medical school in Baltimore.

 

Read the rest of the article at the AARP’s Blog

On NBC’s ‘The Today Show’, NBC News Chief Medical Editor, Dr. Nancy Snyderman, provided additional insight into Linda Ronstadt’s proclamation that she can no longer ‘sing a note’: “People forget that vocal chords are muscles, so if Parkinson’s causes stiffness and slowing down of the muscles, there is no reason to think your voice wouldn’t be affected too. “If you have to rely on the fine muscle quivering of a vocal chord, that means that a singer can’t do what he or she wants to do.”

Linda Ronstadt joins Muhammad Ali and Michael J. Fox, among celebrities also battling Parkinson’s.

Fox turned out to be 1 of 4 cast members of a Canadian sitcom diagnosed with Parkinson’s under the age of 40, prompting investigations into the cause of the cluster. More recently, the bio of the sitcom’s Director, Don Williams, claims, ‘Current evidence suggests that as many as eight crew and cast members on the project have developed Parkinson’s symptoms’, leading many to speculate about an environmental trigger such as pesticides or previous toxic landfill material possibly being in the ground beneath the studios.

Also, in a previous appearance on David Letterman’s talk show in 1997, Fox claimed he previously had Lyme DIsease from a tick bite, saying, ‘I got a dose of the Lyme. You feel like crap. l got bit by a tick,’ he confessed. ‘They’re really tiny. Then what happens is you get this little red mark. You think it’s a rash or you think it’s some bad thing, but it’s a tick bite. Then you are doomed because it’s already too late.’

Keep in mind, Fox was diagnosed with Parkinson’s in 1991 and didn’t disclose it to the public until 1999. If the tick bite and Lyme Disease part of the story is true, then Linda Ronstadt would be the second celebrity to be diagnosed with Parkinson’s Disease following a bout with Lyme Disease, strengthening the theories about a correlation between the two conditions.

Banner for the new Michael J. Fox show 2 hour Season Premier, Thursday September 26, shows Michael in a suit and tie being kissed on the cheek by his co-star with other cast members dancing about in the background. Click here to visit the show's website at NBC.

 

For many years it was also thought that actress Katharine Hepburn had Parkinson’s because of the tremor in her voice and body movements. She set the record straight in the 1993 TV documentary Katharine Hepburn: All About Me (1993) (TV), which she narrated herself, ‘Now to squash a rumor. No, I don’t have Parkinson’s. I inherited my shaking head from my grandfather Hepburn. I discovered that whiskey helps stop the shaking. Problem is, if you’re not careful, it stops the rest of you too. My head just shakes, but I promise you, it ain’t gonna fall off!’.

In 2003, her niece Katharine Houghton, confirmed in a television interview that it was not Parkinson’s disease, but a progressive ,albeit treatable, neurological disorder called essential tremor, that used to be called palsy. Her aunt’s form of it was called a familial tremor, which is inherited. Children of a parent with the disease have a 50 percent chance of inheriting a gene that causes it. 

Linda Ronstadt’s memoir, “Simple Dreams: A Musical Memoir” is slated for release on September 17, 2013. In the book, she does not discuss her diagnosis of Parkinson’s or her battle with the disease.

 

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AbledConditions story headline shows a photo of HLN 'In Session' producer Erik Nivision looking to his left with his hands in his pockets and wearing a blue, green and white striped shirt along with a grey fedora with white trim. He was diagnosed with Lyme Disease last month after 2 years of what he calls 'hell'.

 

Erik Nivison was diagnosed with Lyme Disease last month after suffering symptoms for 2 years 

Erik Nivison is a producer for HLN TV’s ‘In Session’ program. Before moving to Atlanta, he grew up in one of the hot belts for Lyme Disease – Connecticut. 

His journey through the medical system over the past two years reads like a parallel diary to other people who develop mysterious and unexplainable symptoms that are misdiagnosed by physicians who are ill-schooled in the complexities of tick-borne diseases – chief among them – Lyme Disease.

Like other patients he had no recollection of being bitten by a tick and didn’t remember any characteristic rash, but went on to develop neurological symptoms, numbness and muscle weakness, as well as Bell’s Palsy, which paralyzed part of his face. 

And like other Lyme patients who were diagnosed late into their battle with the disease, Erik faces an unknown future of possible continuing health complications.

He’s sharing his story at CNN.com to raise awareness in the hope that others won’t suffer the same fate. Here’s an excerpt :

‘For most people it starts with a telltale, bulls-eye rash and flu-like symptoms. It then develops into neurological problems, such as numbness in the limbs or facial paralysis, leaving the patient in excruciating pain.

About 300,000 Americans each year are infected with Lyme disease, according to the Centers for Disease Control and Prevention. That number, the CDC reported last week, is about 10 times higher than they had previously estimated.

But what if you never get the rash? What if you blow off your symptoms as a bad case of the flu?

I spent the first 30 years of my life in New England, where talk about Lyme disease was prevalent. When I was little my mother would have us slather on the DEET before we went outside made sure we had long pants and socks on, especially when we’d play in the woods. She’d check us for ticks and remove any she found with a match and tweezers. Problem solved — no rash, good to go.

Then in 2006 I moved to Atlanta, and Lyme disease faded from my mind. Common in the Northeast, Lyme disease is found less often in the South. The year I arrived, eight cases were reported in Georgia, compared to 1,788 in my home state of Connecticut.

I am now one of the cases for 2013.

At least once a week, my muscles start to twitch uncontrollably; they tighten so much my fingers turn into fists. I can feel my fingernails digging through my skin. My heart races out of control and my blood pressure skyrockets.

My doctor holds me down, consoling me, telling me to breathe because he has no idea what’s going on. My face is numb, and it feels like I have the flu. I have trouble breathing. The pain is so bad I start to cry.

A few years ago I noticed a pain radiating down my leg, starting from the small of my back. I had had artificial disc surgery in my spine a couple years prior and thought this new pain was due to scar tissue from the surgery.

Then I went to work one day and lost all feeling in my legs. My arms were tingling and it felt like I had pins and needles everywhere in my body.’  

 

Read more of Erik’s story at HLNTV.com and CNN.com.

 

And read our special coverage on Lyme Disease.

 

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The new global epidemic grows as physicians bicker over its existence and treatment 

New estimates released by the U.S. Centers for Disease Control and Prevention (CDC) paint an alarming picture of how big the Lyme Disease threat is in the country. Based on findings from three ongoing CDC studies, the preliminary estimates spike the number of Americans diagnosed each year with Lyme Disease to around 300,000 versus the previous estimate of 30,000.

That’s 821 cases per day.

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Most Lyme Disease cases in the United States reported to the CDC through national surveillance are concentrated heavily in the Northeast and upper Midwest, with 96 percent of cases in 13 states:

Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Vermont, Virginia, and Wisconsin.

However, the non-profit Lyme Disease Association, Inc. (LDA), has compiled information from various sources that it says shows that Lyme Disease has been reported in all states, and believes, along with the CDC that many cases are going unreported or undetected. 

Global map from Gideon-Online shows various shaded areas depicting countries where Lyme Disease has been reported.

 

World-wide, the World Health Organization reports the bacterium that causes Lyme DIsease is found in forested areas of Asia, north-western, central and eastern Europe, although the LDA claims it has spread to other continents in over 80 countries.

Lyme Disease is caused by the bacterium Borrelia burgdorferi, a spirochete (identified in 1981 by Willy Burgdorfer) and is transmitted to humans through the bite of infected blacklegged ticks. Its name comes from the towns of Lyme and Old Lyme in Connecticut after a number of cases were diagnosed in 1975.

A screen grab from the documentary 'Under Our Skin' shows a microscopic view of the bacteria that causes Lyme Disease. Click on the photo to go to the documentary website.

 

Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called ‘erythema chronicm migrans’ which can resemble a bullseye target. But what makes it difficult to fully diagnose and gauge the true number of cases is that not everyone develops this rash or even remembers they were bitten by a tick.

Illustrations show different sizes of ticks compared to the size of a dime as well as the characteristic bullseye pattern left by a tick bite on the back of a man. The illustration also shows tips to prevent Lyme Disease such as: Wear repellent; check for ticks daily; shower soon after being outdoors; Call your doctor if you get a fever or rash.

 

This, in turn, can lead to diagnostic errors, especially since the bacterium that causes Lyme Disease is also called ‘The Great Imitator’ because it can spread to almost every part of the body and ‘imitate’ the symptoms of other diseases. It has been misdiagnosed as Chronic Fatigue Syndrome, ALS, Alzheimer’s Disease, Arthritis, Multiple Sclerosis and other auto-immune disorders.

 

Protect yourself against tick bites

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The International Lyme and Associated Diseases Society has some tips on protecting yourself from exposure to tick bites and preventing Chronic Lyme Disease:

1. Know that Lyme disease is a nationwide problem

Contrary to popular belief, Lyme disease is not just an “East Coast” problem. In fact, in the last ten years, ticks known to carry Lyme disease have been identified in all 50 states and worldwide. Although the black legged tick is considered the traditional source of Lyme disease, new tick species such as the Lonestar tick and a pacific coast tick, have been found to carry Borrelia burgdorferi, the corkscrew-shaped bacterium that causes Lyme disease.

Avoiding a tick bite remains the first step in preventing chronic Lyme disease. One needn’t have been “hiking in the woods” in order to be bitten by a tick. There can be ticks wherever there is grass or vegetation, and tick bites can happen any time of year. Spraying one’ s clothes with DEET-containing insecticide, wearing long sleeves and long pants, and “tucking pants into socks”, continue to be the best ways to avoid ticks attaching to the skin. But don’t forget the post-walk body check.

(Editors note: Also, keep sticky tape on hand at home to easily pick up any ticks you find around your home, and after any outdoor activity in an area where ticks have been found, throws your clothing into a hot clothes dryer for about 10 minutes to kill any ticks hiding in folds or seams.)

2. Check your tick facts

Ticks can vary in size from a poppy-seed size nymphal tick to a sesame-seed size adult tick. The ticks can carry other infectious agents besides the spirochete that causes Lyme disease, including Ehrlichia, Anaplamosis, Babesia, and Bartonella. Lyme disease can sometimes be hard to cure if these other infections are not treated at the same time.

3. Show your doctor every rash

(Editor’s note: If you find a tick, try to pull it out by lifting it with tweezers by grabbing as close as possible to the biting area. Do not squeeze the body or that will send blood and infection back into your body.)

Although the bull’s eye rash is the most famous, there are many other types of rashes associated with Lyme disease. In fact, Lyme disease rashes can be mistaken for spider bites or skin infections. Take photos and make sure a medical professional sees the rash before it fades.

4. Don’t assume that you can’t have Lyme disease if you don ‘t have a rash

Lyme disease is difficult to diagnose without a rash, Bell’s palsy, arthritis, or meningitis, but you can still have Lyme and not have any of those signs or symptoms. Many people react differently to the infection and experience fatigue, headaches, irritability, anxiety, crying, sleep disturbance, poor memory and concentration, chest pain, palpitations, lightheadedness, joint pain, numbness and tingling.

5. Do not rely on test results

Currently there is no reliable test to determine if someone has contracted Lyme disease or is cured of it. False positives and false negatives often occur, though false negatives are far more common. In fact, some studies indicate up to 50% of the patients tested for Lyme disease receive false negative results. As a result, the CDC relies on physicians to make a clinical diagnosis based on a patient’s symptoms, health history, and exposure risks. Doctors who are experienced in recognizing Lyme disease will treat when symptoms typical of the illness are present, even without a positive test, in an effort to prevent the development of chronic Lyme disease.

Read the other 5 Prevention Tips at www.Ilads.org

 

Symptoms of Lyme Disease infection

Photo shows results from a Google image search of Lyme Disease rashes including the bullseye pattern and other patterns.

 

Lyme Disease is one of 28 conditions that can be spread by ticks, and if left undiagnosed or untreated, it can quickly spread throughout the organs, the central nervous system and the brain, sometimes even before the ‘bullseye’ rash appears. Couple this with mis-diagnoses and a lack of proper treatment, and the Lyme Disease Association says the following symptoms can develop:

Several days or weeks after a bite from an infected tick, a patient usually experiences flulike symptoms such as aches and pains in muscles and joints, low-grade fever, and/or fatigue. But no organ is spared. Other possible symptoms include:

· Jaw — pain, difficulty chewing

· Bladder — frequent or painful urination, repeated “urinary tract infection”

· Lung — respiratory infection, cough, asthma, pneumonia

· Ear — pain, hearing loss, ringing, sensitivity to noise

· Eyes — pain due to inflammation, sensitivity to light, sclerotic drooping of eyelid, conjunctivitis, blurring or double vision

· Throat — sore throat, swollen glands, cough, hoarseness, difficulty swallowing

· Neurological – headaches, facial paralysis, seizures, meningitis, stiff neck, burning, tingling, or prickling sensations, loss of reflexes, loss of coordination, MS-like syndrome

· Stomach — pain, diarrhea, nausea, vomiting, abdominal cramps, anorexia

· Heart — weakness, dizziness, irregular heartbeat, myocarditis, pericarditis, palpitations, heart blockage, enlarged heart, fainting, inflammation of muscle or membrane, shortness of breath, chest pain

· Joint — arthralgias or arthritis, muscle inflammation and pain

· Other Organs — liver infection, elevated liver enzymes, enlarged spleen, swollen testicles, irregular or ceased menses

· Neuropsychiatric — mood swings, irritability, poor concentration, cognitive loss, memory loss, loss of appetite, mental deterioration, depression, disorientation, sleep disturbance

· Pregnancy — miscarriage, premature birth, birth defects, stillbirth

· Skin — single or multiple rash, hives

The symptoms may occur in any combination, in any sequence, and over any time frame.

A screengrab from the documentary 'Under Our Skin' shows a closeup of a newspaper with the headline: 'Battle Lines Drawn In Bitter Lyme Wars

 

Treatment of Lyme Disease infection and the debate over ‘Chronic’ Lyme Disease

The frontline of primary treatment for Lyme Disease is the use of the antibiotic Doxycycline for one to four weeks, which is effective against the Borrelia spirochete bacterium and other infections spread by ticks. Other antibiotics may be used for children under the age of 8  and women who are pregnant or nursing.

If caught early, the prognosis is usually good, and depends on how long the tick was attached. It takes 36 to 48 hours for the bacteria to move from the ticks body to its saliva. A single dose of doxycycline given within 72 hours after the removal of a tick that’s engorged or has been attached for 36 hours may reduce the risk of developing Lyme Disease.

However, late diagnosis and treatment results in a more dismal picture. In 2005, a meta-analysis which studied results from a number of studies concluded that some late-stage Lyme Disease patients present a level of symptoms and physical disability on par with patients suffering from congestive heart failure.

The big and bitter debate between scientists, physicians and patients occurs collides when patients claim a long-term or ‘chronic’ case of Lyme Disease and want antibiotic treatment beyond the recommended duration, something the majority of scientists and physicians say is ineffective and dangerous.

A patient advocacy group, the Lyme Disease Association, sums it up by saying, ‘Those working in academia and conducting clinical trials for pharmaceutical companies and government tend to assert that Lyme disease is overdiagnosed, while hands-on Lyme clinicians say it is underdiagnosed. 

The issue is critical. If a doctor sees Lyme disease as under-diagnosed and thus treats all comers, the actual diagnosis might remain unrecognized and untreated while unnecessary use of antibiotics might lead to antibiotic-resistant infections in the human blood reservoir at large.

On the other hand, if a doctor sees Lyme disease as overdiagnosed and thus hesitates to treat, patients will go on to develop late stage, disseminated Lyme disease.

Tens of thousands of Americans are tragic testimony to option number two. By the time such individuals are finally diagnosed, they are often simply too sick to respond to a single month of antibiotics. Either they must accept the guidelines of IDSA (Infectious Diseases Society of America) and Yale physicians that they now have the incurable and debilitating autoimmune disorder known as “Post-Lyme Syndrome,” or they must find a physician who believes that longer-term antibiotic treatment at a higher dose may eradicate the spirochete that conventional therapy could not.’

 

A screengrab from the documentary 'Under Our Skin' shows someone holding a foam hand with the words 'Hands Off My Lyme Doctor'

 

Such physicians have been harder to find as many have abandoned treating Lyme Patients because insurance companies won’t pay for long-term treatments and many risked facing malpractice charges and losing their licenses if they administered long-term antibiotic treatments.

It’s likely the revised estimates that began this article will fuel even more rancorous debate and we will continue to follow it, so check back often for additional information and links in our ongoing coverage of Lyme Disease.

More to come . . . in the meantime here are some thought-provoking moments in an extended trailer from a 2008 film called, ‘Under Our Skin’, made by Andy Abrahams Wilson whose sister contracted the disease.

 

AbledLinks:   Lyme Disease Association  |  American Lyme Disease Foundation

 

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