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POSTED ON September 8th  - POSTED IN AbledConditions
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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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POSTED ON September 8th  - POSTED IN AbledHealth
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AbledHealth story headline shows a photo of a computer animation depicting a pair of tweezers grabbing at the jaws of a tick embedded in human skin with the headline: Lyme Disease: 10 times more cases - How to keep safe and how to treat it.

 

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.

A screengrab from the documentary 'Under Our Skin' shows a sign that says 'Warning - tick infested area - through a chain-link fence. Click on the photo to go to the documentary website.

 

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

Photo shows three people hikinh in a hillside using walking polls with dark-green fir trees in the background.

 

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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