Letters to Nightline (7-13-01)
Comments from the producers of the Nightline show broadcast on 7-5-01 followed by some of the letters they received.
``July 13 We received many e-mails about our recent broadcast on alternative treatments for Lyme disease. Here is a response from Nightline Senior Producer Richard Harris and a sample of viewer e-mails:
We have been flooded with e-mails ...
Ted Koppel was making a simple point in his opening comments for the program: what is sometimes viewed as alternative medicine can become mainstream over time.
The doctor who was drummed out of the profession, possibly to his death, had advocated doctors sterilize their hands. Over time, he was proven right ...
We were not saying that copper bracelets and long-term antibiotics should be considered in the same category of alternative medicine.
Mr. Koppel was simply using a device to make the point that what might not be recognized one day could become mainstream at a future date. And he wanted to pose the question about `what happens when patients feel a particular treatment is effective and science refuses to recognize it?'
That's what our discussion focussed on: how much latitude do doctors and patients have in using treatments not officially sanctioned in scientific journals?
Those who are taking long-term antibiotics ... and believe they are benefiting -- and there are many -- take issue with those doctors who remain unconvinced that such treatments are effective.
It has literally become a war between the two factions in medicine. We cannot adjudicate the dispute. Our job is to shine a light on the controversy in hopes that the opposing groups can come together and find solutions both sides can embrace.
Ultimately, the patients who are suffering need answers. Medicine cannot always provide the answers. But a healthy and constructive dialogue between the polarized groups might lead to better science ... ''
Concerning your story on Lyme Disease. I don't understand why it is taking the press so long to see through the charade concerning Lyme Disease. Your piece tended to place those advocating the use of antibiotics in the same category with "alternative" medicines. When did the use of antibiotics for the treatment of a bacterial infection become "alternative?"
You tended to side with those who minimize the seriousness of this disease. If one listens to them, Lyme Disease is a rarely occurring, easily diagnosed, and treated illness with no long-term effects.
If this is true then why is the Pharmaceutical industry spending millions of dollars on research seeking a "valid" test, a "more effective antibiotic," and, most importantly, a vaccine.
If the disease is "No Big Thing" then why do we need a vaccine in the first place? Who do these "Lyme Experts" who minimize the disease represent? Certainly not the victims of this disease.
Then who? Who stands to lose if Lyme Disease is recognized for what it really is, "a rapidly spreading, insidious, difficult to diagnose, and treat disease; a disease with possible serious consequences including death."
The "experts" insist the thousands of people who claim to have chronic Lyme don't. If so, what do they have? Are people who complain with symptoms of M.S., A.L.S., Parkinson's, dismissed as quacks? Where is the scientific evidence proving these diagnoses?
How is Lyme different? It will remain the enigma that it is unless the press listens to the people and not the "experts" who are paid by the insurance industry to testify against people suffering from Lyme. Look into the possible conflict of interests with these "experts." ..."
Richard J. Tegnander
I was disappointed in your program on Lyme disease. I left with the feeling that the use of long-term antibiotic treatment for Lyme disease is just another alternative treatment. I know that people with Lyme disease can have the same symptoms continue after one month of antibiotic treatments.
The doctor from Harvard says that the Lyme disease is killed from the month of antibiotics without citing evidence showing that the disease has been killed. Where is the proof that the Lyme disease was killed, when the patience still has the same symptoms? Doctors prescribe many weeks of antibiotics for acne.
I know of someone with an infected knee who was put on IV antibiotics in a hospital and needed antibiotic treatments for months! Why is Lyme any different?"
I thought your introduction about Lyme disease (July 5) was informative, but the "experts" discussing treatment were not a good choice.
Although many people with Lyme do use alternative treatments to help their symptoms of the disease, the fight we are having with the medical establishment is about antibiotics.
I think we all know the problems with overuse of antibiotics for minor problems, but at this time there is no other treatment for this disease.
Antibiotics DO work. What are we to do until more research is done? If you can find the answer to that, please let me know. I've been sick for a long time. I just want my life back."
I don't think you delved very deeply into the real problem with Lyme Disease diagnosis and treatment. I am glad you did the story on Lyme, but not about how you seemed to feel it was not warranted the full investigative treatment other stories seem to receive.
For example, why did you allow Dr. Klemper to speak about his chronic Lyme study recently in NEJM and not allow anyone else to provide expert counter testimony? Do you believe everything you read?
My doctor and I agreed that this Chronic Lyme study was flawed from the very beginning in its design alone which makes it inappropriate to make the conclusions it eventually made ... "
Your program on Lyme Disease/Alternative medicine left me confused & disappointed. You compared long term antibiotic treatment with wearing copper bracelets & drinking urine. No wonder the public is confused.
First, all of the doctors treating Lyme with long-term antibiotics are conventional doctors treating with conventional medicine. The debate is over whether there is long term infection or not.
Many of the studies lean toward ... the proof of ongoing infection. No one brings these studies up, while the researchers shake their heads & go on to other areas.
The insurance companies have way too much influence in this arena. I am not one that sees conspiracies & cover-ups behind every corner but I am convinced that there is one going on here.
This is after I have watched my wife go from a very healthy 31 yr. old (marathon runner) to being bedridden & in constant pain. The only thing that has helped is long-term antibiotic therapy.
The ... doctors could not even diagnose her & refused to consider anything else if they could not explain it.
They told her to go home & live with it, which meant to go home & die. We tried 8 doctors & one week at Mayo clinic ...
Second, your show did not show the devastating symptoms that come from this disease & that they are there forever, yet can be diminished with antibiotics keeping the germ level down.
I have observed closely (mom & brother) the devastation of cancer, & Lyme competes equally. Except that cancer you can lick, & Lyme you have to live with forever.
I'm sorry that you do not see this disease as seriously as it is. I had hopes because you have the resources, respect & abilities to be the ones to really show the truth here. But one thing is for sure we will not go away & unfortunately there are more of us everyday."
Your Nightline segment on Lyme disease should not have categorized antibiotic treatment of chronic Lyme as "alternative." Dr. Klempner's research has been known to have flaws in it and it only addresses ONE viewpoint.
There are studies that show the seriousness of neurological damage after an early tick bite and the need for Intravenous therapy early on (Coyle.P.) If insurance companies recognized this, they would NOT have to be dishing out monies for patients later on, who have been diagnosed with Chronic fatigue, fibromyalgias,etc. and who never get "cured" after one or two pills.
Thank you for airing the topic, but do a follow up piece on the politics of this illness in more depth."
I am sure 98% of your audience with no knowledge of Lyme Disease and the treatment protocol recommended by Dr. Burrascano now associate it with quackery!
I am sure they view Lyme patients as desperate souls too! You have done a great disservice to a paradigm pioneer willing to risk all to help those patients who need it the most.
Dr. Burrascano is ahead of his time in recognizing Lyme Disease is not cured by three weeks of antibiotics; he has recognized the need for "long-term" antibiotics.
A major question needs to be asked about all these recent studies and the timing of their release? Were the results of these studies hurriedly released to make Dr. Burrascano look bad?
How can main stream medicine base a study on humans as accurate when the medical profession does not have an accurate test to detect Lyme Disease?
Is anyone willing to bet on tests that have proven to be 70% accurate? There is no gold-standard test that says within even 90% accuracy that one does or does not have Lyme Disease.
Unfortunately your show last night did not help anyone with Lyme Disease or anyone else!"
"Dear Nightline Producers,
Although you have bought up a well needed controversy, that of Lyme Disease, your short story needs some follow-up.
I waited for your Lyme special to air for many weeks, and was disappointed that the beginning of the story was not followed up with someone representing the Lyme literate ...
The extreme you should have emphasized more is the people whom are misdiagnosed with MS, ALS, Lupus, Chronic Fatigue and Rheumatoid Arthritis ...
I did appreciate the beginning of the program you aired by stating one patient was out of her wheelchair. I just expect several follow-ups from a broadcasting company as thorough as ABC. I hope you can spread some Lyme Awareness despite all the bad press as of late.
Their are so many Lyme patients that have died because they have not driven on to obtain antibiotics from their physicians.
They have gotten off of therapy only to relapse and need IV or IM antibiotics, when oral antibiotics would have been sufficient had they continued treatment. Even a pimply faced teen can get long term antibiotics for acne!
I feel sorry for our physicians being treated so harshly. The AMA has one arm tied up, and the Medical Board the other. They fear for their jobs!
I was recently diagnosed with long standing lyme disease and if I must, I will go to the FEED STORE and aquire antibiotics to treat myself. I feel like a new person, after many years of pain, and reduced cognitive ability.
May you stress in your next report that Lyme Disease is a spirochete mediated illness, just as syphilis (another spirochetel illness). Neither of these illnesses are cured by a few days or months of antibiotics.