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» LymeNet Flash » Questions and Discussion » General Support » NPR Lyme discussion today at 2 MST

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Author Topic: NPR Lyme discussion today at 2 MST
sickofsick
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My father-in-law informed me of this discussion today. I don't know what program or anything else. Diane Rehm?
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poppy
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Not Diane Rehm. Must be something else.
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Atta
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Fresh Air. I"m listening right now in Philly on 90.9. It's based off Michael Specter's lyme article in the New Yorker.

Interesting, I haven't been listening too long and I missed the beginning but I already have some issues with the claims he is making-like a tick needing to be attached 36 hours to transmit the disease.

But there is some good info there and it's obviously a tough subject to cover if you can't go completely in depth.

Still listening though.

--------------------
I am my own Atta Girl
Rife as of 06 06 12
Homeopathic treatment
Mostly raw diet-real organic foods
Meditation
Yoga
Acupuncture

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Atta
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I'd love it if others can catch this interview and comment. You should be able to find a recording if you miss it.

--------------------
I am my own Atta Girl
Rife as of 06 06 12
Homeopathic treatment
Mostly raw diet-real organic foods
Meditation
Yoga
Acupuncture

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Judie
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I just posted the New Yorker article in another thread. Lot's of issues....
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Atta
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Really? I will check it out. Was a hard one for me to listen to for sure.

He mentioned the rife machine but also said that no legitimate doctor would ever recommend using one. I've know a few legitimate ones.

--------------------
I am my own Atta Girl
Rife as of 06 06 12
Homeopathic treatment
Mostly raw diet-real organic foods
Meditation
Yoga
Acupuncture

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sickofsick
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I thought it was pretty informative. He talked about the poor testing being a big problem.

He states that the CDC is now recommending prophylactic treatment (3 weeks) with tick bite, symptoms, in endemic area. He specifically said, not in an area like Salt Lake City (grrrrrrr).

He cited a couple of examples of people who were very ill. I think it was a good description of the devastation Lyme causes. One treated with diet modification and rife and is better (I think Roth is his name).

He did discuss coinfections.

I felt it was probably more positive than negative. Painted the picture of the controversy, but sided with science-based treatments.

He also mentioned the millions of hate letters he received as a result of the article. I got the feeling he personally believes the problem is much bigger than recognized.

I wasn't totally focused and didn't take notes, so may have missed some things.

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Keebler
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Atta,

MDs are not allowed to bring up the subject of Rife machines nor discuss with patients unless their patients bring up questions themselves.

Even then, they cannot discuss details or recommend. They might share a few sentences about others' reported experiences and that is it. They have to leave it alone from there.

If a patient is using a rife, on their own, or with a LL ND, of course, that patient would be able to report back with their MD (hopefully who is a LL MD) but the MD is not allowed to guide treatment in any concrete way whatsoever.

The FDA has not approved this as a medical device so that is why MDs can't discuss it. It's "experimental" and the FDA has even imprisoned some who have made such machines if they make any claims whatsoever. It seems unreal but it has happened (usually targeted for other trumped up charges but the rife was at the center of these incidents).

Because they are under a different licensing departments than MDs, NDs (naturopathic doctors) can talk about rife and recommend. Some LL NDs incorporate rife treatments in their clinics, too. Of course, state laws can vary for NDs. More detail:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

Topic: RIFE Machine - Reference LINKS

LL Naturopathic links here, too.
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poppy
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Millions of hate letters? I am doubting this. Does he confuse this with people who are writing to him because they disagree with things he said? If so, he is in the wrong field. Journalists are supposed to consider all sources of information, even if they do not fit a preconceived point of view. Preconceived means that all the information had not yet been gathered or evaluated. I would say he did not come to this with an open mind. And the timing of this shows why. They bring out the big guns to silence the thousands of patients who support the current pending legislation.
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poppy
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And Specter apparently said there was no such thing as chronic lyme. See, even journalists without any medical training can foist ignorant opinions on the public, and get paid for it. Who is he to make this determination? A lot less qualified than most lyme patients.

This man has revealed his true colors.

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Keebler
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Wouldn't any good doctor who was saying things that "millions" of people reacted to WANT to know more about WHY they sent letters?

Even if he interpreted them as hate letters, wouldn't a true and good doctor understand certain emotions if lives have been greatly affected and try to get the facts behind the emotions?

And, wouldn't any good journalist ask these very questions of the speaker?

Wouldn't a good journalist say, "well, really, millions? What was the count?"

And "it's hard to understand patients sending someone 'hate' letters unless something really did not mesh with their experience with this infection and what you are saying. Can you elaborate on the goal of some of these letters?"

An excellent journalist would have read the article beforehand and also - even if just part of research, called others in the article who may have been in disagreement with the author.

And wouldn't a good journalist the want to bring in some patients and ILADS doctors?

Sadly, not when IDSA doctors are involved.

And not where, otherwise, top journalists are not lyme literate enough and they trust the IDSA far too much as their main sources.

I am so hoping that the journalists of our world will wake up, get better educated on this issues and start living up to the very best of journalistic standards.

So far, the fall way short. They can still do right but they don't even know they are not getting the real details, I'd bet.
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Keebler
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"no such thing as chronic lyme." Well . . .

And this makes our familiar circles, friendship circles and all other work or social circles all that more cut off to us.

I know many who would rather believe the lies spewed forth by IDSA doctors than what I may mention is really happening to my body in relation to lyme. Sadly, what those with lyme share with others just seems so unreal.

I know the truth but I can't help but feel a deep shame around those in my life who think I've just failed as a human being.

I'm strong enough to know the truth but it still creates a terrible dynamic and for those who have not been through the punches as I and are newer to all this, it can have even more of an effect.

To hear on one of the very best journalism programs that there is "no such thing as chronic lyme" can have a ripple effect that can cut deep.

It also prevents us from seeking healthcare for other issues as, since lyme (especially untreated as many much endure) affects so many other body systems, organs and functions, it's much harder for any other doctor to fully understand what's happening.

For many, just being in a waiting room is nearly impossible due to sensory overload but there is no quick way to explain why because it has been declared that the illness does not exist. Dire effects.

Not to mention the number of people who rely on some of the detail in this - errors about tick attachment time, etc.

Some of what he wrote (or spoke) is criminal negligence. But not all. And that's what can be very devastating. Few will know how to sort the facts from the errors.
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poppy
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If this is an example of how he handles subjects, I don't understand why any reputable magazine would keep him on staff.

I got the impression this was just a quickie for him. No real research, just dinner table talk and reading what Wormser and the CDC/NIH say. Superficial is putting it kindly. It really is just about worthless.

And I know what you mean, Keebler, when you say it makes our lives harder when relatives and friends believe this stuff. My own brother heard that news about chronic lyme is just a new tickbite, and unfortunately I did get another bite. But I already had longterm symptoms at that time, and couldn't see any change or worsening after the new bite. So leaves me wondering if he is doubting what I say. Are there any more ways they can find to hurt us? Probably not, every possible avenue has been pursued, from research money, to publishing, to insurance, to doctor access, to brainwashing the public.

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Atta
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Thanks for the rife link Keebler. I had a DO suggest I look at something called a rife machine. For me that was obviously enough to read between the lines and look into it.

And now I use it as my treatment and have an ND who is very much in the know.

I understand why it's a risk to bring it up and Specter didn't strike me as being overly comfortable with mentioning it either.

I also feel that this was a "quickie" for him, as you say Poppy. This was no expert opinion. And that is what was frustrating for me listening to it as well. Even though it did have some good points what is the take away for the general populace that doesn't have Lyme?

--------------------
I am my own Atta Girl
Rife as of 06 06 12
Homeopathic treatment
Mostly raw diet-real organic foods
Meditation
Yoga
Acupuncture

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Atta
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Sickofsick-

Frustrating, to say the least, that he specifically said not in Salt Lake City.

I almost choked when he actually mentioned Michigan though. It seems my home state is finally getting some acknowledgement.

--------------------
I am my own Atta Girl
Rife as of 06 06 12
Homeopathic treatment
Mostly raw diet-real organic foods
Meditation
Yoga
Acupuncture

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Keebler
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For reference.

http://www.newyorker.com/reporting/2013/07/01/130701fa_fact_specter?utm_source=Last+Sapi+appeal&utm_campaign=New+Yorker&utm_medium=email

The New Yorker, Annals of Medicine

THE LYME WARS

The Lyme-disease infection rate is growing. So is the battle over how to treat it.

- by Michael Specter - July 1, 2013

No "reader comment" feature


http://www.newyorker.com/contact/contactus

Contact The New Yorker

(Obviously, it will do no good to contact the author - or just the author, himself. He has already stated in the NPR interview that he got millions of hate mail, so something seems amiss about that interpretation.)

Best to reply to editors - publisher - and owner.

-------------------------------

http://www.npr.org/2013/06/26/195223507/the-lyme-wars-that-tiny-ticks-have-wrought

NPR "Fresh Air" Interview with Michael Specter - June 26, 2013

'The Lyme Wars' That Tiny Ticks Have Wrought

Read Interview Text - or Listen to 37-minute interview

See "Reader Comments" - Link to right of text
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Robin123
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I found him facetious, saying things were facts when they're not. Especially the 36-hours bit for a tick to infect. Not. Willy Burgdorfer said at a Lyme conference in Bard, NY in 1999 that ticks can have the bacteria in their saliva and transmit immediately.
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Keebler
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I wish ILADS would design a course for JOURNALISTS - perhaps through the National Press Association, or other professional organizations.

I'm just too tired to try to get the ball rolling on that but sure wish someone could.
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Rivendell
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Has Pamela Weintraub's updated version of "Cure Unknown" been released yet?

I'm sure that she will be interviewed by Diane Rehm, who interviwed her before.

She is a science journalist who knows her stuff, with a family who was sick with lyme as well.

She is the journalist to interview.

[ 07-10-2013, 03:51 PM: Message edited by: Rivendell ]

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