Lynchburg, VA - Right now, there are thousands with the same symptoms -- unexplained aches and pains, low grade fever, fatigue, who don't know what's wrong with them. Their doctors don't know either. It may be one of the most misdiagnosed medical problems today and if left untreated, it can attack your joints, heart, nervous system. Yet what we're talking about is not some mystery illness. Would you be surprised to know it's Lyme Disease?
ABC 13 News Anchor Noreen Turyn knows. She's done the research, because she is living through it. She begins an in-depth look into The Lyme Controversy.
From Under Our Skin, Courtesy of: Open Eye Productions - "I've been misdiagnosed as having chronic fatigue syndrome, Lupus... -- MS, fibromyalgia, Lupus... -- Fibromyalgia, MS... -- Chronic Fatigue Syndrome Fibromyalgia."
These are real people featured in an upcoming documentary by Open Eye Pictures. They're a few of the countless true stories of suffering, misdiagnosis and a seemingly futile search for answers.
Michele Spruce, Lyme Sufferer - "I had a doctor at UVA tell me it was all in my head, and that I probably needed to see a psychiatrist."
Michele Spruce is among them.
Spruce - "We were camping and hiking in the Smokey Mountains."
About 12 years ago, she got a bite. She had the classic bull's eye pattern, and still no one thought of Lyme Disease.
Spruce - "Went to the doctor, and she said I got bit by a spider. Even though I had the rings I had the fever I had the flu.
Honestly, Michele didn't think of it either. But she began getting extreme pain, swollen limbs, disrupted sleep, constant fatigue. Doctors put her on a variety of medications, but keeping up her job at the Lynchburg Community Market became increasingly difficult.
Spruce - "I went to urologists, neurologists, everything, and could not, no one did a Lyme disease blood workup."
About two years in, a doctor her mother worked with in West Virginia recognized the symptoms, saw Michele, took her off all the other drugs and put her on antibiotics.
Spruce - "And within 6 months I was back to work full time and back to being Michele."
But after having waited two years for proper treatment, Michele, like countless others, has had many setbacks, and is now out of work on disability.
Dr. Norton Fishman, Lyme Disease Specialist - "I've been in business 42 years doing this, this is easily the toughest disease I've ever seen to diagnose or treat."
Dr. Norton Fishman practices in Rockville Maryland. He became what's known as a Lyme Literate Medical Doctor, after learning some patients he'd misdiagnosed, had gone to a doctor in New York, were treated for Lyme, and were getting better.
Dr. Fishman - "And I started looking into it, doing testing and started following up with treatment, and what other doctors were doing and I found out that 80% of my people I was calling chronic fatigue, fibromyalgia, was induced by Lyme Disease."
Dr. Robert Brennan, Infectious Diseases Specialist - "They used to say syphilis was the great masquerader because it would present in so many different ways, seizures, dementia, heart disease and it was all Syphilis, and this is the same way."
That's why Lyme Disease is so hard to diagnose. That and the fact that you don't always get the warning signs.
Dr. Brennan - "You don't have to have a tick bite, you don't have to have a rash, everyone agrees with that."
The current tests are also unreliable. That's why the CDC (website - news) says doctors shouldn't base a diagnosis on them-- instead, do some detective work. But Dr. Fishman says not enough doctors are listening.
Noreen - "So you think there are many patients with Chronic Lyme that they aren't aware of it?"
Dr. Fishman - "Absolutely, and..."
Noreen - "Thousands?"
Dr. Fishman - "Well let's try millions."
So now some of you may be wondering what do I do? We've set up a special section on our website for this report, including a checklist to take to your doctor to help with a diagnosis. Click here to go to it. http://www.wset.com/external.hrb?p=lyme
As you've just heard, it can be a long road to discovery. Wednesday, how my sister's story kept me from traveling down it too far.
Posted by bettyg (Member # 6147) on :
thanks ann for the text words to read vs. downloading!
Posted by nan (Member # 63) on :
The Lyme Controversy - Part 2 Wednesday November 07, 2007 4:43pm Reporter: Noreen Turyn Posted By: Webteam
Lynchburg, VA - It's a disease that's so distressing and often misunderstood, thousands are willing to travel great distances for help. Even right here at home, people are driving hours, even flying to get diagnosed and treated. Usually after spending years searching for answers. They're finding them in what are being called Lyme Literate Medical Doctors, or LLMDs.
In part two of the Lyme Controversy, ABC 13 News Anchor Noreen Turyn explains how her sister kept her from traveling too far down that long road to discovery.
My sister is named Laury. My story actually begins with hers.
Laureen (Laury) Peck, Noreen's Sister - "It was in the summer of 1967 or early fall, and I was 9 years old."
We lived on Long Island, the region of the country where we now know Lyme Disease first surfaced. A mysterious bull's eye rash appeared on her back.
Laury - "About the time it faded away, I started getting really bad joint pains in my knees and they would travel, here a day or two and then the other knee, then neck was stiff, groin."
Vic Turyn, Father - "You couldn't touch her she was in extreme pain, I'd have to pick her up to take her to the bathroom, and she'd just scream, that's how painful it was."
But at the time, no one had even heard of Lyme Disease so doctors didn't know what to do.
Laury - "Crutches one time, the cast another time, I remember being in a wheelchair for a week at one point and then, the pain started to fade away and I seemed to be fine."
Flash forward 35 years. The pains returned. Plus numbness, migraines, tingling. A neurologist diagnosed her with Multiple Sclerosis, but the medicine made her worse.
Laury - "It was horrible, and the doctor said well it can't be from the medicine, which it was Copaxone at the time, because it doesn't cause that. It's just your MS getting worse."
That's when Laury did her own research, and learned the symptoms for Lyme can be similar.
Laury - "I sent this info to my doctor and he said you've got to stop looking at this internet stuff, you've got to stop that."
But Laury didn't stop. She flew to New York to see a Lyme Literate Medical Doctor. Turns out she was right... and because her Lyme was neurological, the doctor prescribed 12 weeks of IV antibiotics. Today Laury's healthy again.
Laury - "You don't want people to worry about you but I wish you had told me sooner."
Vic and Eileen Turyn - "You didn't tell us anything about it."
That's because at first, I didn't know there was anything worth telling. About 5 years ago, I started getting pain in my right hip muscles. It was intermittent, mainly annoying. I often felt rundown and noticed a frequent low grade fever. But I brushed it off.
Within a few years, my right shoulder joined in. The pain became more frequent, steady. I thought it was my mattress, so I bought a new bed. My pocketbook must be too heavy. It must be the way I sit at my desk. I'm just getting older.
In the last year and a half, the fever has been daily and the pain steadily increasing, more constant.
Noreen - "Actually I'm having extreme high pain today and yesterday."
It's like when you hit your thumb with a hammer, imagine that lingering pain I spread out in your body, and never, ever going away. Massage was only providing immediate relief. I finally went to my doctor. I took numerous blood tests including Lyme that were negative. He didn't know what was wrong. Neither did the rheumatologist. When I finally did tell my sister, it set off an alarm.
Laury - "Constant pain, Hello! Tired all the time? Hello! Check it out, maybe they'll rule it out, but check it out!!!"
She was absolutely insistent that I see an LLMD. I found only four in Virginia. In June I made the 4 hour drive to the one I found in Chesapeake.
Dr. Sabra Bellovin, LLMD - "Hello, how are you?"
Noreen - "Well, I wish I were better."
Dr. Sabra Bellovin spent more than 2 hours with me on my first visit. She's an outright detective. She looked at my past tests, took a thorough list of symptoms, my history. I hadn't realized my constant sleep disruption, night sweats and fatigue were all clues as well. And lower vitamin levels.
Dr. Bellovin -"You were diagnosed with Scurvy, which is low vitamin C and I see that in a lot of patients with spirochetal illnesses."
Despite negative test results, Dr. Bellovin diagnosed me with Lyme Disease. And she hadn't even seen this. Something I didn't even remember until I recently found it in my records. I'd had a tick bite about the time my symptoms started.
Noreen - "This used to be my vitamin pill case, this is my case now."
Now I'm on a number of prescriptions, antibiotics for Lyme, several others for possible co-infections. And lots of vitamins.
My sister has residual hearing loss, and I've seen some improvement after 5 months of treatment. The pain is still there, and I still tire very easily. I'm only burning my candle at one end these days.
But I'm hearing numerous heartbreaking stories of suffering, and mine is definitely not one of them. My sister and I just hope by sharing our stories we may be able to help people shorten their search.
Do your research but be prepared, because there isn't just one answer out there, in fact the medical community is at war over this. We'll have more on that Thursday.
Click here to visit the special section we've set up with a plethora of links.
[ 07. November 2007, 08:17 PM: Message edited by: nan ]
Posted by SuZ-Q (Member # 5903) on :
Part 3 airs Thursday at 6:00. This segment is supposed to cover the controvery b/w camp A and B. Should be interesting. Coverage has been good and pretty accurate, so far.
Posted by daise (Member # 13622) on :
Posted by Soleilpie (Member # 8481) on :
Oh wow, that was really good!
They also have links to ILADS, IGeneX, LDA, and Lymenet, along with the IDSA and the CDC on their site.
Posted by SForsgren (Member # 7686) on :
Posted by ElaineC (Member # 9857) on :
Great! Look forward to seeing part 3!
Posted by hurtingramma (Member # 7770) on :
This is great! Wouldn't it be nice if other stations picked up the series.
Posted by Soleilpie (Member # 8481) on :
The Lyme Controversy - ABC 13's Noreen Turyn Tells Her Story ------------------------
The Lyme Controversy - Part 2 ----------------------------------
The Lyme Controversy - Part 1
» Watch the eVideo
Lynchburg, VA -
We've told you about how hard it is to diagnose, and how many patients have spent years searching for answers. Yet within the medical community, there's a battle raging over how to treat Lyme Disease. It is indeed known as the Lyme Controversy.
The main players at battle: The International Lyme and Associated Diseases Society, or ILADS, and The infectious Diseases Society of America -- IDSA. One doctor says uncovering this war is more important than the whole Watergate scandal because we're dealing with people's lives. *****************************************
Dr. Norton Fishman, Lyme Specialist (LLMD) - "We have something going on that needs to be addressed and is being fought, not only ignored, which would be bad enough, but being fought."
Dr Norton Fishman is a member of ILADS. He says Lyme Disease is being politicized, while thousands, maybe millions are suffering.
Let's start with testing. No one disputes the tests for Lyme Disease are unreliable. But there are two labs ILADS members feel are more accurate.
Dr. Fishman - "We use a special lab in California that is giving us better results. They're picking up 4/5 of what we think are the cases as opposed to 1/3 so it's much better."
The lab is IGeneX. More accurate, yet many insurance companies won't cover it, it's not in their network. I paid $715 out of pocket, but I chose to take it.
My doctor already had made her diagnosis. The results-positive. Same for my sister, Laury. It is a certified lab, but Dr. Fishman says some Infectious Diseases doctors don't give it merit.
Dr. Fishman - "They dismiss and say the lab's no good, because it's giving us a test we don't believe in."
Meaning it could prove that there is something called Chronic Lyme Disease, which IDSA says doesn't exist.
Their treatment guidelines say 2-4 weeks of antibiotics, will cure you. And if the symptoms come back down the road, they call it Post Lyme Syndrome.
Dr. Robert Brennan, Infectious Diseases Specialist - "We think it's more the immunologic response which is a non infectious process where they do need treatment with anti-inflammatories, with whatever medicine you can use to decrease the inflammation."
ILADS adamantly disagrees.
Dr. Fishman - "That's like telling someone they have post Alzheimer's."
If your symptoms come back, they say you're not cured, it's Chronic Lyme. ILADS guidelines say you may need months, even years of antibiotics to wipe it out. Dr. Fishman says the proof is in the 2/3 of his patients who've gotten better. Same with my doctor.
Dr. Sabra Bellovin, Lyme Specialist (LLMD) - "I believe the other organization is more concerned about antibiotics resistance and I'm concerned with the individual patient."
And that makes for a fierce battle over treatment. Some doctors are being hauled before their medical boards for over-prescribing. Especially for the risky IV antibiotics.
Dr. Brennan - "They're expensive, they have side effects, there are other risks and there's no data to show that it does any good."
Dr. Brennan says 20 years of scientific studies back up their standards.
But ILADS says their research is being ignored. In fact, Connecticut's Attorney General has launched an investigation to see if the IDSA panel who wrote the guidelines did ignore it. One of his concerns something that's already happening.
Noreen - " You had meds not covered ?"
Michele Spruce, Lyme Sufferer - "Yes."
Noreen - "Because it was longer than the standard?"
Spruce - "Yes."
Michele Spruce is still paying off about a $10,000 debt. My sister Laury had to borrow $8,000 from my parents to cover the rest of her IV antibiotics beyond the 4 week standard .
Laureen (Laury) Peck, Noreen's Sister - "I went before the insurance board begged them, with my doctor begged them to pay, and they refused
Thanks to my parents she is cured as a result. But what about the thousands maybe millions, caught up in this medical melee?
Dr. Fishman - "We're missing the opportunity to help people get better. I'm seeing we can do something for most of them. Not all of them, but most of them. And I don't want to be the only one. I'm not Don Quixote."
I want to add that Dr. Brennan says he's seen a large number of patients who have gotten better without long-term antibiotics.
Another problem with this disease, it's grossly under-reported. The CDC (website - news) admits there are at least 10 times as many cases out there, but they only count those with the bull's eye rash.
Again I want to stress that you need to do your research no matter what your ailment is. Click here to go to a special section we set up to help you.
» Find More Articles Related To This One
EACH SERIES ALLOWS REPLIES, so let's use this wonderful opportunity to sound off and thank the station for their 3 part series. WAY TO GO NOREEN!
Viewer Comments on The Lyme Controversy - Part 3 ************************************************ CHW IP: Logged Posted: 11/09 1:39a
It was refreshing to finally see accurate information on Lyme disease from a news station. Thank You from the bottom of my heart!
Sharon H. IP: Logged Posted: 11/08 10:25p
Thank you for bringing the controversy over Lyme disease diagnosis and treatment out into the open. Like your sister, I also have some mild-to-moderate hearing loss as the result of Lyme -- although it is not a rare, it is often overlooked as a Lyme symptom.
Cognitive and psychological problems may also arise, especially in children, and be misdiagnosed as depression, attention deficit, or bipolar disorder.
I hope you will encourage your federal legislators to vote on proposed legislation that will put more money to better research, overseen by a task force from both sides of the controversy. We need more research and more answers. Too many are sick -- they should not be ignored anymore.
llee IP: Logged Posted: 11/08 10:15p
Thanks so much Noreen for sharing your story. It has been really helpful and encouraging for me. I have been living with these symptoms for 3 years and recently gotton worse in the last year.
I started out with Rheumatoligist here in Lynchburg. Where I was treated for Rheumotoid Arthritis possible Lupus for a year with no relief.
Then I went to UVA for more test and was treated for Fibromyalgia and maybe early stages of Lupus.
I get injections every 3 to 6 mths. There is relief for a while and back to normal but the fatigue never ends and now the winter is here and I ache constantly and coldness is worse.
I am wondering now could I still have the wrong diagnosis. What's my next step. Thanks concerned married young mother of three.
THanks for your help Noreen
JSMayhew IP: Logged Posted: 11/08 8:53p
Have seen your reports on LD, and they are dead-on. Am currently seeing a LLMD in Charleston, SC, after discovering that doctors in southside VA and NC know very little about Lyme and do not want to know.
They still claim it's rare around here! You are absolutely right that you have to do your own research and be very diligent in locating the right doctor. I first realized that I might have Lyme after seeing a segment of Good Morning America about a sufferer who also worked for ABC news. Bless you for bringing this controversy out in the open.
GREAT COMMENTS! keep them coming! thank the reporter and the station!