tdtid
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Wow...great article. Thanks for the wonderful find!!!!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Clarissa
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I love this quote from Daryl's portion of article:
Hall has homes in rural New York and Maine, both Lyme hotspots. He spends most of his time in New York. He laughs when I ask him if he knows anyone else with Lyme disease.
``Who do I know who doesn't have Lyme disease?'' he says before getting back to raging against the medical machine.
cantgiveupyet
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Member # 8165
posted
thanks for posting. Im in the area and hadnt seen this one. Daryl Hall is the best.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bettyg
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copying it all here to read.... EDITED;
both articles by SAME writer!
2 nice LONG articleS! DARRYL'S IS 2ND ONE!! ////////////////////////////////////////
6-18-08
Ticked Off
A look inside the complicated politics of Lyme disease.
by Tara Murtha
I was sitting at my desk one Monday morning last May cruising through emails on autopilot when I realized I couldn't open my jaw to eat a slice of toast.
I hightailed it out of the office for an emergency dental appointment. After pressing fingertips along my jaw line, the dentist diagnosed a ``slipped disk'' in my jaw and sent me home to pop muscle relaxers and sip meals through a straw for a week.
I wasn't too bothered by the temporary inconvenience. With a wedding to finish planning, I was even a little grateful for the time off.
But a few days into washing down pills with juiced vegetables and indulging in pajama-clad daytime TV, I started feeling terrible. Everywhere. Dizzy with chills. Exhausted. Anxious. Not at all what someone relaxing on pills, juiced kale and carrots should feel like.
By Friday a hard, itchy lump was bulging out of my right temple. The dull headache that had been humming for the previous two weeks that I'd attributed to work stress sharpened to a fine point, like a hot poker twisting behind my right eye.
My face became lumpy. Walking got shaky.
I stayed relatively calm. After all, I went to Catholic school, where you don't see the nurse unless you're on fire.
Jesse, my fiance, thought maybe I'd been bitten on the temple by a spider.
It was Memorial Day weekend, so we figured it best that I load up on ibuprofen, soldier through and see my doctor first thing Tuesday morning.
But by Sunday my head was crushing in and my arms and legs were starting to twitch and spasm. I couldn't think clearly.
Light and sound seared. Afraid I was having a brain aneurism, we took off for a local hospital.
What I didn't know was that an army of spirochetes, spiral-shaped bacteria, was drilling into my muscles, squiggling through curls of my brain and swarming my seventh cranial nerve.
Months later an MRI at Penn showed a ghostly white cloud in the exact spot where my brain had throbbed until I collapsed on the floor of the emergency room.
The question became when and where had the first few Borrelia burgdorferi, the microscopic spirals of bacterium that carry Lyme disease, burst into my bloodstream?
``Were you hiking?'' most everyone asked.
The assumption was always that I had to have been doing something outdoorsy or vacationing somewhere exotic.
How else do you catch Lyme disease?
If only. Truth is, cities like Philadelphia, cities with neighborhoods bordering on woods and parks, are ideal habitats for deer ticks.
And here's something else to think about: Infection rates peak in June and July when ticks are in the very hungry and teeny-tiny nymph stage, smaller than a poppy seed.
The Centers for Disease Control and Prevention (CDC) reports that in the Northeast, approximately 50 percent of ticks carry Lyme disease.
In 2006 the CDC reported that Pennsylvania had the second highest number of reported cases in the country, with people 5 to 9 and 50 to 59 years old infected most frequently.
The number of reported cases across the nation each year has increased 40-fold since the CDC began keeping track in 1982. The CDC estimates real figures are seven to 12 times higher.
Back in the emergency room I was propped up Indian-style in a bed.
My excruciating headache was temporarily at bay, thanks to a shot of morphine administered after I blacked out.
It was a relief to breathe again and to realize I wasn't dead. But there was still a golf ball-sized lump lodged in my temple, and I knew the morphine- induced calm was temporary.
I was wheeled out for a CT scan, then for a second one, this time facedown, before being stranded in the hallway on a gurney.
A while later a cocksure doctor strolled in clutching pamphlets on how to stop grinding your teeth. He told me he didn't see anything wrong and that maybe I needed a mouth guard for sleeping.
I don't grind my teeth. I invited him to inspect my un-ground teeth.
Appealing to his sense of logic, I asked him why, if I did grind my teeth, would an itchy lump suddenly spring out of my head? Why would my whole body shake?
Jesse, meanwhile, was begging the doctor to run more tests. He kept asking the doctor what he should do back home in two hours when the morphine stopped working. The doctor then ripped me a script for Percocet and sent me home.
I requested another morphine shot for the road, but the doctor wouldn't listen. In his eyes I wasn't capable of testifying on my own behalf.
Despite being so obviously sick, I was turned away. Chided, almost.
And practically everyone I know with Lyme disease has a similar story. And here I'd been toiling through a stupid day job just for the health insurance.
I floated through the car ride home, curled up in bed and waited for that one precious, luscious, beautiful shot of mercy to wear off.
Welcome to the twisted, murky underbelly of the Lyme disease wars. --------------------
Lyme, the most politicized and contested disease since the emergence of AIDS, is also the fastest-growing infectious illness since AIDS.
The medical establishment debates over almost every aspect of Lyme: the definition, who has it, the odds of catching it, the range of symptoms, its origin and most important, whether it's a chronic condition that persists after 10 to 28 days of antibiotic treatment.
Of course wars rage on two levels:
There are white-haired dudes pushing paperwork in offices, and there are the people in the trenches who deal with the fallout.
On high, the Lyme controversy is epitomized by the bitter battle between Infectious Diseases Society of America (ISDA) and the International Lyme and Associated Diseases Society (ILADS).
The IDSA is the incumbent power.
They authored the official, sacred Lyme disease guidelines at the root of the clash; these guidelines regulate diagnosis and treatment.
They're the ones health insurance companies use to deny coverage for treatment outside narrow definitions and to indict physicians who prescribe antibiotic treatment beyond their purview.
Dozens of doctors have had their medical licenses challenged or revoked for practicing outside the guidelines.
In short, the ISDA's perspective on Lyme is that it's easy to detect and cure--and that chronic Lyme doesn't exist.
The guidelines state:
``There is no convincing biological evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease.
Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic subjective symptoms after recommended treatment regimens for Lyme disease.''
ILADS, leading the fight against the guidelines, charges that the guidelines don't consider patient testimony or clinical evidence that many extremely ill patients actually respond to prolonged antibiotic treatment.
Established in 1999, ILADS is a diverse group that includes primary care clinicians, researchers and patient advocates.
They charge that the ISDA guidelines ignore patients with persistent symptoms of Lyme disease, and unjustly punish doctors for prescribing longer-term antibiotic treatment.
The 14 ISDA members who wrote the guidelines are the old guard who, if they admit their initial published reports of a simple disease are wrong, sacrifice professional pride, ego and--according to recent investigations--financial gain.
In the introduction to Pamela Weintraub's Cure Unknown, a new book investigating the Lyme wars, Hillary Johnson, author of Osler's Web--the definitive book on chronic fatigue syndrome--eloquently distills the dispute as a ``biomedical reenactment of the Hatfields and McCoys.''
I don't really remember the two days after I left the emergency room.
I lay in the dark in my bedroom soaked with a fever, barely conscious. I have faint memories of Jesse slipping orange Jell-O, painkillers and vanilla Ensure through my locked jaw, and of puking, sweating and shaking a lot. At work they expected me back recovered from a little jaw malfunction. I wasn't conscious enough to even think about that.
I don't remember how, but at some point Jesse made an appointment for me with a maxillofacial specialist I knew from having had a root canal a few years back. We didn't know where else to turn.
Jesse dragged me out of bed for the appointment. I looked in the mirror and saw another person: a face swollen and sore with knots and lumps. The temple lump had grown to Flintstones proportions.
A vein in my forehead bulged like it was going to break. Parts of my face weren't moving. The right side was paralyzed. It was like staring at a stranger and trying to wiggle their eyebrows with your mind.
The doctor was perplexed. He was kind. He had no idea what was wrong, threw a week or so of antibiotics at it and told me I was too swollen to examine. I was to come back in two days.
The one thing almost all experts agree on is that early detection and early treatment generally prevents progression into more severe neurological problems.
Common first-stage Lyme symptoms include flu-like symptoms such as fever, headaches, fatigue and joint pain.
Second-stage Lyme disease advances into neurological complications such as numbness, all-over pain, Bell's palsy, hallucinations, cognitive impairment, sleep disorders and nerve damage in the arms and legs.
Advanced symptoms include serious neuropsychiatric symptoms such as severe depression and rage.
In the tidy (virtually patientless) world of the ISDA, evidence means scientific, diagnostic proof detectable in a lab and quantifiable on a chart.
Patients are considered unreliable data. Clinical observation is ignored. [\qb]
Odd strategy for a disease that doesn't even have a reasonably accurate diagnostic test. The sensitivity for the two standard diagnostic tests ranges from 37 to 71 percent.
Responsible for Lyme's hometown state (it was discovered in Old Lyme, Conn., in 1975),
Connecticut attorney general Richard Blumenthal launched an unprecedented antitrust investigation into the ISDA in November 2006.
On May 1, 2008, Blumenthal announced the investigation had determined that some of the 14 experts who had approved the ISDA's guidelines received consulting fees, research grants and stock ownership from drug companies and other businesses with stakes in the treatment and diagnosis of Lyme disease.
The investigation also determined the ISDA had suppressed scientific evidence, used insufficient trials and excluded studies that addressed chronic Lyme and the benefits of long-term antibiotic treatment.
The ISDA agreed to ``a one-time special review'' of the guidelines in order to end the investigation.
So far no date is set for the review.
In an email, a spokesperson wrote, ``These patients are clearly sick with something. But the best medical evidence available doesn't show that it's Lyme disease.''
The antibiotics from the maxillofacial specialist got me on my feet the next day. I wasn't exactly running yet, but I was able to walk steadily.
When I saw him again two days later he confirmed there wasn't anything he could do. He advised me to find a neurologist.
Multiple sclerosis and trigeminal neuralgia diagnoses were thrown around.
That day I called neurologists and tried to make an appointment. I'd learned to communicate by holding the palsy side of my mouth shut with my fingers and sort of yelling through the other side.
I was offered appointments in October.
This wasn't a pap smear. By the time you need a neurologist, don't you pretty much really, really need a neurologist?
I got an appointment for the end of July.
Meanwhile, I felt zippered into the wrong body--an inferior one with broken parts.
Like I was maneuvering the Sigourney contraption in Aliens, a Herculean effort of precise movements just to open a Diet Coke or pry the lid off a pill bottle.
When the immune system or an antibiotic kills bacteria, the bacterial death releases a toxic gas that also makes you sick.
It's called the Herxheimer's (Herx) effect. It's why people sometimes get worse before getting better while on antibiotics and why symptoms cyclically wax and wane in patients with chronic Lyme.
I began to venture out a bit. I started going to my acupuncturist three times a week. Acupuncture was the only treatment I could find to help the palsy.
Kara, my practitioner, would stick needles all over my face and then cinch metal jumpers wired to an ancient-looking machine and blast electricity into my facial muscles, like jump-starting a car.
In six months I was scheduled to be a bride.
According to the CDC, Lyme disease is the fastest-growing vector-borne disease in the country.
More than 95 percent of all reported vector-borne illnesses in the U.S. are Lyme.
Outside of the nonprofit turnthecorner.org (run by chronic Lyme patient Staci Grodin), there's not much in the way of organized Lyme disease training for physicians.
A doctor can do residency in Chicago, where Lyme disease is practically nonexistent, and accept a job at a hospital on the mid-Atlantic coast, where Lyme is concentrated, completely ignorant of the treatment and detection of an epidemic that, left to progress, can cause irreversible neurological degeneration.
What almost all Lyme disease sufferers have in common is that despite exhibiting a roster of classic symptoms--
headache, inflammation, sensitivity to light and sound, loss of motor skills, loss of memory, blurred vision and in my case, facial paralysis--
we're often left insufficiently treated as spirochetes drill deeper into our central nervous system.
I didn't have the supposedly telltale bull's-eye rash.
Lyme is a multisystemic neurological disease that impacts the organs--not a dermatological inconvenience.
Estimates for the frequency of rash accompanying infection swing a wide 40 to 90 percent.
As outlined in Cure Unknown, public misinformation about the frequency of the bull's-eye rash illustrates the doomed logic typical of the rickety scaffolding the ISDA's guidelines rest upon.
Tests that recruited patients with the rash determined that the rash was a distinctive symptom of the disease.
Go figure. Studies that acknowledge neurological (statistically untidy, invisible) symptoms find the rash a less frequent star in a constellation of symptoms.
There's a window.
Twenty percent of people with chronic Lyme--people who weren't treated early enough or with a sufficient amount of antibiotics and are still exhibiting symptoms and still have bacterial spirochetes digging into their bodies--will never recover, no matter what treatment, after a time.
When a friend diagnosed me with Lyme because his mom had similar symptoms, I made an appointment with my primary care physician and requested the tests.
They came back positive, but my doctor said I didn't need more antibiotics.
After 49 days out of work, I returned to the office.
I was still exhausted, but my disability insurance had rejected further disability pay because, as they told me over the phone in response to the packet of documentation I provided, it appeared that my ``visits with the doctors were social.'' *********************
When I got back to work, my coffee cup and pens and things were exactly as I'd left them, except I could barely stay awake for the commute.
Bell's palsy is half-facial paralysis that afflicts approximately 8 percent of those infected with Lyme disease.
Half-paralysis doesn't mean your face is normal on the ``good'' side.
When you laugh or cry, the energy that can't release through the paralyzed side explodes across the working side. It looks and feels wrong.
It's hard to eat and you can't purse your lips together after a slick of gloss. You can't kiss.
The right side of my face looked like it was sliding off the bone. My lips drooped into a cartoon frown.
With the condition, tear ducts on the paralyzed side either constantly water or stop producing tears, so you either have to wear a patch to keep your eyeball from drying out, or a steady stream of tears trickles down your cheek. It's a humbling, hot mess.
When I went to the neurologist in July, he said my primary care physician was crazy to not have prescribed more antibiotics.
Lyme likes to settle somewhere, he said, and it looked like my little spirochete army was settling in my brain.
e said I risked dementia in years to come if I didn't have sufficient antibiotics.
He prescribed a month's worth and ordered an MRI, the one that showed the little ghost in my skull. He tapped on my knees with the little hammer to check my reflexes, which he said were fine.
I won my disability pay retroactively. ****************************************
I sent a whole new packet of documentation. This time with pictures.
Friends say they don't notice a difference in my face anymore. But I can tell.
When I'm stressed out, it feels like a baby's fist is wedged into my cheekbone. The area beneath my left eye randomly goes purple so it looks like I was punched, which feels about right.
I've had my days feeling sorry for myself. It was no fun deciding whether to cancel my wedding. (I didn't.)
All that's just surface, though.
It's the invisible effects of chronic Lyme disease that matter most.
The days I can hardly think straight. My short-term memory is shot. I've always been a distracted cereal box-in-the-fridge sort of person, but we're talking about rerenting movies, and forgetting what errands I ran in the morning.
Alan MacDonald, a leading Lyme researcher and doctor, has discovered connections between Lyme disease and Alzheimer's.
Sometimes I can barely get out of bed. I'll be out cold for 16 hours at a clip, and when I get up it feels like my muscles are filled with wet sand. In my house, we call it the sober hangover.
Jesse has chronic Lyme too. His knee blew up a few weeks after I returned to work last year. Now his knees and elbows blow up every few weeks.
My neighbor Loretta has it. And my friends Raph, Jack and O.J., and Sara's mom, Beth's mom and Devin's mom, dad and brother. And Lucky, the dog downstairs.
There are Lyme support groups all around the world and in every U.S. state, with at least 17 in Pennsylvania alone. People gather in church basements and school cafeterias to share the struggle to get well.
After more drama getting retested for Lyme through the neurologist's office--the test came up negative this time and I had to go again--I got a final pathology report in the mail in October.
It says the findings are compatible with early infection with B. burgdorferi or past infection treated early in its course.
It also says the results aren't consistent with chronic Lyme infection.
Soon I'm going back in for tests and, I hope, more antibiotics. I want to be symptom-free.
It's said that in science, the important thing is not to obtain new facts but to discover new ways of thinking about the ones you already know.
Throughout history, many neurological diseases weren't fully recognized until technology let us see them in charts and graphs.
Chemical differences in the brains of Parkinson's patients weren't discovered until the '60s.
Multiple sclerosis used to be called the ``faker's disease.'' ----------------------
It's weird to be invisibly, immeasurably ill with symptoms that come and go. When I had full-on Bell's palsy I was constantly aware that I was sick and that no one could tell me what was really wrong.
It's difficult to quantify fuzzy symptoms like exhaustion, short-term memory loss and headaches within the context of an ordinary life.
Like most people, I work too much. I forget to call the insurance company. I space on my car keys. I get stress headaches.
But my ordinary life now is different from the ordinary life I led before last summer. I took the standard month's worth of antibiotics. It's a year later, and I'm not completely well.
I'm ****ed that what I had to say--and showing physical symptoms clearly visible without a microscope--didn't matter because the right stats didn't register on some shoddy tests.
I'm ****ed that my face was unnecessarily disfigured for the better part of a year because I was crunched like a number by some glib emergency-room physician.
You may not see the baby's fist in my cheekbone or the wet sand in my muscles or the vise on my forehead I try to beat back with a daily Advil habit. But they are there. I am here. And I'm sure as hell able to testify on my own behalf.
Tara Murtha ([email protected]) is PW's arts and entertainment editor.
***************************************
I can go for that
Why Daryl Hall wants to kill all the effin' deer.
In July 2005 Daryl Hall says he woke up feeling like he'd been ``beaten with a baseball bat.'' He figured it was the flu and stalled traveling a few days before flying out for a show in Phoenix.
It was right in the middle of covering ``She Used to Be My Girl'' by the O'Jays, he says, that his body shut down.
``I managed to get offstage and collapse ... I was just down on the ground.
It surprised everybody, especially the guys in the band, and John. I just said, `Go, John, go! Just do something.' I literally walked offstage and fell down.''
Hall's got a balls-to-the-wall work ethic and professional pride that comes from working hard to get what you've got.
He wasn't happy about having to cancel the rest of the tour to recover from what he still thought was a wicked flu. He called his doctor when he got home.
``He checked me and didn't really see anything wrong. Now you know that story,'' he says.
Indeed I do, I say to Daryl Hall, as we ***** about Lyme disease on the phone from upstate New York.
It was Sara Allen (his ex-girlfriend and ``Sara Smile'' muse) who anecdotally diagnosed it as Lyme. Allen, who has the disease herself, advised him to get tested.
Luckily, Hall's body had produced enough antibodies by that point to register on the tests. His doctor prescribed two weeks of Doxycycline.
But Hall had done some Internet research and wanted to ensure he was treated correctly. He went to Dr. Joseph J. Burrascano Jr.
Burrascano is one of the most well-known and controversial Lyme-literate doctors, having written a sort of rebel Lyme treatment guide in association with the International Lyme and Associated Diseases Society (ILADS).
In 2001 New York State's Administrative Review Board for Professional Medical Conduct brought a case against Burrascano for medical negligence.
The charges included prescribing long-term antibiotic therapy for Lyme disease. He's now retired.
Twenty to 30 percent of ticks carry multiple infections.
Hall tested positive for Babesia, Ehrlichiosis, Borrelia and Bartonella, common tick-borne co-infections.
[QB] According to the American Lyme Disease Foundation, there are 10 major tick-borne diseases carried by 82 species of ticks currently found in the United States.
Testing for co-infections isn't currently a part of standard screening.
``That's the thing the CDC doesn't recognize,'' Hall says.
``People are misdiagnosed and underdiagnosed, and most people have multiple diseases and they're not treated for them.
Doxycycline treats only Borrelia. The other ones just rage in your body or go into hiding or change shape.''
In retrospect, Hall had symptoms before the Phoenix fall: tremors, headaches and fevers. He'd blamed it on stress and allergies.
``I've been treated for these four [diseases], and now recently found out I have two more.
So I have six different tick-borne diseases I'm dealing with. But I'm feeling good and I'm on a regimen,'' he says.
His active symptoms were no joke.
``I had joint pains. A lot of skin problems where I'd break out in strange herpetic kinds of rashes.
I had shingles, immune system breakdown and a lot of stiff necks and extreme tiredness. Eye things, ear things,'' he says.
He says his ear would just ``close,'' estimating that he went about 70 percent deaf. For a musician, that's 100 percent ****ed.
Hall has homes in rural New York and Maine, both Lyme hotspots. He spends most of his time in New York. He laughs when I ask him if he knows anyone else with Lyme disease.
``Who do I know who doesn't have Lyme disease?'' he says before getting back to raging against the medical machine.
``You know, I've been trying to fight for the truth in Lyme disease, and it's hard for me to even get any press because nobody seems to believe it matters,'' he says, his voice rising.
``It's very frustrating and depressing, really, that this disease has such little support and understanding.''
Hall's been pounding pavement and doors about Lyme disease since his diagnosis.
He plays benefit concerts and writes press releases.
While talking about Lyme disease on the Howard Stern Show last year, he said, ``Kill all the ****in' deer!''
He thinks people think he was kidding. But he's dead serious about slashing the deer population in the interest of Lyme disease prevention.
The number of deer in a given area determines the number of deer ticks, which in turns determines the amount of Lyme disease.
Deer ticks can't maintain high levels of fertility when feeding only on smaller animals like rabbits and rodents.
Due to conservation efforts, suburban sprawl and the elimination of natural predators, the deer population has skyrocketed to unnaturally high levels, throwing the ecological balance out of whack.
It's well-documented that when the neighborhood of Mumford Cove in Groton, Conn., dramatically reduced their deer population, cases of Lyme disease plummeted.
On Monhegan Island, a gorgeous little spot off the coast of southern Maine, 13 percent of residents had enough Lyme disease to show up in tests.
Tired of being sick, they voted to eradicate the deer population with sharpshootersin August 1999.
After a few years, the deer tick population crashed, and no new no cases of Lyme have been reported. ---------------------------------
It's assumed President Bush caught Lyme while vacationing at the Walker family compound in Kennebunkport, Maine.
When Dubya announced last August that he'd been treated for Lyme disease the previous year, Hall's hopes for drawing attention to the Lyme wars rose.
It's customary to report presidential health matters, so it's unusual that his Lyme disease diagnosis was kept under wraps for a year.
The official story is that it was detected early and resolved fully.
Not surprisingly, Bush didn't do anything for Lyme awareness or prevention. Ironically, his dad H.W. dedicated Lyme Disease Awareness Week back in 1989. *********************
Nothing much came of that either. Though it's interesting that the elder Bush's statement from back then acknowledges that if Lyme disease isn't treated early, ``serious complications may develop that can affect the heart, nervous system or joints,'' which contradicts the medical establishment's current stance that chronic Lyme doesn't exist.
Daryl Hall knows that being wealthy and famous, he and Bush had it good and have access to the level of treatment the rest of us often struggle to find. The difference is Hall gives a ****. *********************************************
Daryl Hall Sat., July 12, 8pm. $45. Keswick Theatre, 291 N. Keswick Ave., Glenside. 215.572.7650. www.keswick theatre.com
He says, ``I was one of the lucky ones because I went to the top.
But I've heard countless stories of frustration and misdiagnosis and needless suffering of Lyme patients because of incompetence and strange agendas.''
Rock on. (T.M.)
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