Topic: Eating Crow With Lyme- Doc Admits CDC Wrong
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Nice to see the CDC is being thought of (by doctors, as well as patients) in the light they deserve ... as NOT credible. They are being so outrageous that they are making doctors take a second look at the Lyme situation.
It appears, if they keep up this farce, that the CDC could climb out from under the IDSA's bed sheets to become the best promotors of LLMD's.
I've broken up the paragraphs here, or you can read the article at the link below.
Doc's Digest by Dr. Rodger Sayre Eating Crow with Lyme ... I HAVE OFFERED AUTHORITATIVE ADVICE, AND LATER BEEN FORCED TO �EAT CROW�! ... At the end of another busy day in the office I leaned back in my chair and propped my weary feet on the corner of my desk, the only flat space not otherwise occupied by charts, forms, and the remnants of lunch.
Gary, my office partner, and I were sharing �war stories.� A couple of our patients that day had been particularly challenging. �You know what?� he grinned. �Medicine is a humbling profession!� Oh, how true!
Medicine is humbling in many ways. Not only is the human body infinitely complex and prone to all sorts of pestilence and manifold frailties, it seems like the rules keep changing!
Is margarine better for you than butter, or not? For those with diverticulosis, should your diet be free of seeds, nuts, and skins? Or does that extra fiber actually do you good? Should ladies in their menopausal years be on estrogen to prevent osteoporosis ... or ... not?
As new information is available, we sometimes have to rethink the old standard recommendations. On more than one occasion I have offered authoritative advice, and later been forced to �eat crow�!
Never has the crow been more difficult to swallow nor had more profound implications for my patients than on the topic of Lyme disease.
I used to believe (and most of my fellow family physicians continue to believe) that Lyme disease is hard to get and easy to treat.
In fact, I as much as stated this in previous articles I wrote on the subject.1 For years I reassured my patients with tick bites that their chances for contracting Lyme disease were slim.
I gave them a list of symptoms to watch for and adopted a �wait and see� approach. For those suffering from Lyme-like symptoms, but with no clear history of tick bite and rash, I rarely did blood work.
But I am now convinced that, at least in my neck of the woods (northeastern Pennsylvania), Lyme is easy to get and hard to treat!
What changed my mind? Personal experience. A family member began to suffer a wide variety of strange symptoms 12 years ago, including facial numbness, slurred speech, problems with balance, abdominal pain, and headache.
After a few baseline studies, her physician informed her that she was depressed and offered antidepressants. She told the physician she had read about Lyme disease and requested testing.
He refused, stating (as I had to several of my patients) that her lack of history of tick bite and the classic rash disqualified her from any consideration of Lyme disease. But she worked and lived on a farm, had pets in the house, cut her own firewood, and spent much of her day outdoors.
Deer (carriers of the primary Lyme disease vector, the blacklegged deer tick) were as plentiful as cows on the farm. The ingredients were all there ...
She changed doctors and her new physician agreed to order an ELISA antibody screening study for Lyme disease. It was negative, she was reassured, and further workup was deferred. But the symptoms persisted, gradually worsening with time.
She developed heart rhythm disturbances, migratory joint and muscle aches, and increasing weakness.
The Lyme studies were repeated, this time including the Lyme Western Blot. Again, she failed to meet Centers for Disease Control criteria for Lyme disease.
Multiple specialists, including neurologists, rheumatologists, and cardiologists, saw her; no one could figure out what was wrong.
I kept thinking, �This seems to fit Lyme disease, but the tests are negative ... Hey, what do I know, these guys are specialists; I�d best keep my mouth shut.�
Finally she was seen by a Lyme specialist. He initiated aggressive therapy for what he recognized clinically, and what was shown on repeat testing, to be a raging untreated case of Lyme disease.
After years of misery and tens of thousands of dollars in medical costs, she is gradually getting better.
This same scenario has been experienced at the HSLDA headquarters in Northern Virginia.
Multiple coworkers are suffering with Lyme disease, but struggling to find adequate treatment in a skeptical and woefully uninformed medical system. The impact on HSLDA cannot be overstated!
How is it that so many competent, caring practitioners are blinded to the truth of this epidemic? The answer is simple, actually.
Like me, they followed the rules as established by the powers that be at the Centers for Disease Control, unaware that there was even controversy regarding the diagnosis and treatment of Lyme disease.
In reality, however, a battle rages between the governmental healthcare policymakers in their well-insulated ivory towers and many frontline clinicians, for whom personal experience clashes with the so-called �standard of care.�
The true victims of this war are innocent Americans: hardworking, upright, and honest individuals like my family member and my HSLDA colaborers, suffering mightily with this brutal disease but with precious few viable options for treatment.
In a role outside his usual job as HSLDA chairman, Michael Farris was appointed by the governor of Virginia to head a task force to explore the issue of the Lyme epidemic in Virginia.
The goal of the task force is to discover better ways to prevent, diagnose, and treat Lyme. Surrounded by those in the throes of the illness, Mike is a motivated man!
As he volunteers his time, energy, and intellect to this monumental project, I hope and pray that his efforts will shine new light into the murky waters of the Lyme controversy.
Please join me in those prayers, and if Lyme disease becomes a topic in your state�s legislature, get informed and get involved!
Endnotes
1 �Ticked Off,� Jul./Aug. 2008 Court Report, and �Lyme Disease: Do You Know the Facts?� Sept./Oct. 2008 Court Report
About the author
Rodger Sayre, MD, FAAFP, has been an HSLDA board member since 1997. He and his wife, Mary, have graduated 6 of their 11 children and continue to teach the rest at home in Pennsylvania.
Dr. Sayre is certified as a Diplomat of the American Board of Family Medicine and is a Geisinger Medical Group associate with a busy practice in Tunkhannock.
posted
Well, well, it's about time - are folks going to follow up on this and thank him? I always figured change would come when it affects them personally.
Posts: 13171 | From San Francisco | Registered: May 2006
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Yes, very good to see...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
quote:Originally posted by Robin123: Well, well, it's about time - are folks going to follow up on this and thank him?
Any idea how to contact him to thank him? I couldn't figure out how to submit a comment or contact the author... Forgive me if I've missed something obvious (and I don't "do" facebook, so that's not an option...)...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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posted
Well, let's hope that the powers-that-be don't come down on him like a ton of bricks. That's how the establishment deals with anyone who suggests the truth might be elsewhere.
This ain't a free country.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Wow, this is an excellent article. It certainly took courage for this doctor to publish this!
My prayers are with him that he will not be prosecuted for seeking the truth outside the CDC box. May he be blessed for his stand to help others find healing.
I hope many other doctors will search out what lyme really is and step out of their comfort zones to find ways to help.
-------------------- Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. Posts: 338 | From NEPA | Registered: Mar 2011
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posted
Great article. We need more doctors willing to face the obvious rather than just sticking to CDC standards!
Posts: 312 | From Utah | Registered: Nov 2010
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posted
I believe things are starting to change; I see that corner up ahead! It might be a few more blocks, but it is getting closer, and we will be able to turn onto it pretty soon! Thanks for the post!
Posts: 217 | From Earth | Registered: Feb 2010
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posted
First time in 11 yrs I've felt like the tide is turning. Let's hope and pray!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
He wrote: "How is it that so many competent, caring practitioners are blinded to the truth of this epidemic? The answer is simple, actually. Like me, they followed the rules as established by the powers that be at the Centers for Disease Control, unaware that there was even controversy regarding the diagnosis and treatment of Lyme disease."
So why is the first link in the box on where to go for more information about lyme disease a link to the CDC??? All the other links are great.
Why not put the CDC at the bottom of the list since the link is only there to present the other side which he admits is flat out wrong. Most people will click on the first link and may not have even read the article.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Unbelievable....what a humble and gracious doctor. A new LLMD in the making???
Posts: 964 | From san diego | Registered: Oct 2009
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I just don't get how he could watch his relative suffer for 12 YEARS before he woke up. He thought it sounded like Lyme - but what did he know? He might have dug a little deeper in all that time to help a little - or a lot.
I am glad he wrote this, but sorry he was such a robot for so long.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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