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» LymeNet Flash » Questions and Discussion » General Support » THE REAL PROBLEM DR PHIL DID NOT ADDRESS

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Author Topic: THE REAL PROBLEM DR PHIL DID NOT ADDRESS
Lymetoo
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I am VERY grateful for Dr Phil's show. It gave me hope that something will be done about this! Been here 12 yrs.. first real hope I've had for the political mess we are in.

Someone posted this letter to Dr Phil on FB... a letter that was sent to him on his website, I think. I took the liberty of editing spelling errors. (hey, it's what I do.. lol)

The letter is a good one! Wanted to share it here. Hope I'm not stepping on anyone's toes.


---

Lyme disease is a devastating illness. I know first hand; I was finally properly diagnosed last fall after suffering for 19 years (and bedridden the first 5 years).

I finally have some hope of getting my life back. But I have to travel 5 hours away to another state to receive adequate treatment, which insurance doesn't even cover.

The REAL STORY here is the MEDICAL COLLUSION, CONFLICTS OF INTEREST, FRAUDULENT SCIENCE and IDSA/CDC MONOPOLY restricting adequate treatment for Lyme disease and co-infections perpetuated on the American public (and international patients as well) by insurance companies for purely financial reasons.

This is CRIMINAL MEDICAL MALPRACTICE and someone should put a stop to it!

This is not about whether long term antibiotics work for treating Lyme disease. They clearly do work (ask any Lyme sufferer who has been helped by them).

This is about people at CDC earning royalties on the ELISA test which is completely inaccurate. This is about insurance companies not wanting to pay for long term treatment (and going to great lengths and expense to keep people ill, including running dozens of doctors out of business who are willing to treat patients properly in order to maintain their monopoly.)

Here's a quote from a Lyme support website that sums it all up:

"The public operates under the illusion that the medical system in this country exists to "make people well." They don't. They exist to make money. That's like saying oil companies exist to make your cars run efficiently.

Auwaerter's job is to make as much money as possible for his masters: His HMO. Dr. Paul Auwaerter ...was part of a research study at Johns Hopkins that found current lyme disease testing can miss up to 75% of those infected.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1248466/
He then had the gall to say there's "no evidence" that his patients have lyme disease. (You didn't disclose any conflicts he has regarding Lyme disease and interested financial parties.)

Sure Dr. Auwaerter's patients are "angry and frustrated". If you'd been sick for years, told repeatedly you didn't have Lyme, dismissed, degraded, and left to suffer needlessly, when adequate treatment that can restore you to health is readily available, you'd be angry with the medical establishment too.

Dr. Phil, your "Uncensored" segment after the show alluded to the problems with inaccurate testing, conflicts of interest, and the IDSA vs ILADS controversy.

But to say you couldn't fit that into the show because of TIME CONTRAINTS was a BIG COP OUT!

(No disrespect to the woman with disabled children, because her story and her family's suffering was equally compelling, and similar stories could have filled an hour.)

But by failing to explain WHY these 3 women have been suffering with Lyme disease for years and years, you missed the whole crux of the Lyme disease story.

They have suffered for decades because insurance companies have seen to it that doctors are NOT ALLOWED to treat patients for Lyme disease (beyond 3-6 weeks of doxycycline).

It's a story the whole country needs to hear. Until someone in their family suffers from Chronic Lyme disease and coinfections, nobody really believes you can't get treatment in your own home town for an epidemic infectious disease that is curable with the proper antibiotics.

Teenagers are treated with antibiotics for years for acne, but that same treatment is refused to homebound Lyme patients suffering with seizures and debilitating pain. It's completely unbelievable and inhumane.

You failed to mention anything about the common co-infections of Lyme disease either (Babesia, Bartonella, Anaplasmosis, Mycoplasma, viruses, etc.). This topic could easily fill an hour show as well.

Please continue the discussion. Lyme disease is the #1 infectious disease in America and spreading rapidly. This story needs to be heard before the whole country is infected!


Two-Year Evaluation of Borrelia burgdorferi Culture and Supplemental Tests for Definitive Diagnosis.
www.ncbi.nlm.nih.gov
Aguero-Rosenfeld ME, Wang G, Schwartz I, Wormser GP. Clin Microbiol Rev. 2005 Jul; 18(3):484-509.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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-
Another issue not discussed and one that he exhibited sitting right there, on stage:

MEDICAL / VERBAL ABUSE & CHARACTER ASSAULT of the patient.

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

I certainly agree with the previous letter. I found his lack of homework appalling, actually, and unprofessional.

For all the good parts of the program, in additon to the above letter, I just have to say that Dr. Phil exhibited the most common medical abuse from of doctors:

Blaming the patient; not believing symptoms to be true; putting the patient in the "accused" chair required HER to PROVE that she is not faking.

That behavior was totally uncalled for. "Devil's advocate":?, he later says. Still UNCALLED FOR - and I wish he would have apologized.

It was abusive. Clearly. And he just brushed it away as, "well, others DO fake. It happens. How do we know you aren't?"

He set the stage for this behavior to be acceptable and most doctors are delighted to follow.

I wish he would have also said he would go back and re-examine all those patients he "treated" in the past whom he determined to be faking it. Wonder how many of them had chronic stealth infections, adrenal or mitochondrial dysfunction?
-

[ 04-15-2012, 02:56 PM: Message edited by: Keebler ]

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Lymetoo
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I think he just was asking questions that SOME viewers would have been asking. He may have even warned her ahead of time that he would say those things. She held her ground very well, though she looked like she wanted to hit him!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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-
He could have made his point without attacking her. She suffered the abuse from his inferior method.

No one should address another person like that, especially a doctor to an ill patient who has come for answers and to expand understanding of the disease process.

And, because it's so common with lyme patients to be treated that way, he should have gone out of his way to shine a light on that practice and without actually participating in it.

He should know that this literally "hits home" for most of the viewers who have lyme. This kind of medical abuse should be addressed and abolished.

Rather than state she has to prove she is not lying, faking, wanting attention, etc. . . . he could have said "well, let's see what is going on."

It's as simple as this:

What is happening? Why?

How can my skills & knowledge help?

And/or what specialist has the best expertise to take over this case? . . . and

How can we work with insurance to get coverage so the patient can get the necessary treatment, whatever the complexity of that protocol or the timeline?"

---------

BTW, he said that most who have seizures are not vocal like that. He should have known that she was having short break though moments where she could sort of use her voice as expression.

He also seemed befuddled that she was somewhat aware of what was going on around her during parts of the seizures. This, too, happens. But most doctors think the patient should be stone-cold unconscious. That is just not the way it works for everyone.

And, vocalizations are not uncommon.

Mine are very loud sometimes, very different (more gasping and Guttural) from hers

but even the Epilespy Association has told me that any action or activity the body does can go "haywire" during a seizure and that they are very individualized from person to person - and even sometimes different from time to time for the same person.
-

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lpkayak
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tutu-gees!!! get in the cellar or a culvert or something!!!

--------------------
Lyme? Its complicated. Educate yourself.

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Keebler
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-
lpkayak,

I assume you are referring to the storm warnings in her area, not to the content of her post?

I sure hope everyone in the way of this storm system can go hide out, with success.
-

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lpkayak
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ok-that is a really good letter. much of what i wanted to say but couldnt get it together to do it

BUT TAKE CARE OF YOURSELF RIGHT NOW TUTE-THEY ARE ALL AROUND YOU!!! YOU SHOULD NOT B PLUGGED IN

--------------------
Lyme? Its complicated. Educate yourself.

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Lymetoo
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Oh sorry... I never turn my computer off... [bonk] [bonk]

The first batch went NW of us. I don't even think it's raining here.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Carol in PA
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That is a remarkable letter.

I hope Dr. Phil appreciates the knowledge and experience that went into it.

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Carol in PA
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Keebler,
Thank you so much for discussing the abuse that patients endure.

Many of us put up with that shi# without knowing how to defend ourselves.

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Lymetoo
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Keebler.. I certainly don't disagree with your points!! But you know he had to "save face" amongst his colleagues. <sigh>

--------------------
--Lymetutu--
Opinions, not medical advice!

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MADDOG
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I did my best to read all of this post ,I failed.
.
LYME BRAIN ,TILT TILT TILT!!!!!!Ding ding!

You have tilted the lyme patient and his brain fried.!!!!

HE HE HE !!!!

MADDOG

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TxCoord
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Maddog, your "laugh" resembles Dog the Bounty Hunter! Bwahahahahaha!

However, great topic and I hope Dr. P gets the message that we are serious. I wish he would just take a half hour and go through some of the posts.

--------------------
I have a good time wherever I go!

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Robin123
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I sure hope Dr Phil is reading the comments he got at his site - so many are asking for at least another program - I could see a couple more being done -

The extra off-camera interview, an 18-minute extra segment, shows Dr Phil acknowledging the difficulty with the economics and politics. He does know something.

I wondered about his attack on Stephanie too - did he have to do that to get past the censors? It was very ugly and she stood her ground.

I was taken aback, and a bit traumatized by it, since what he did to her was done to me throughout my medical search for answers, but often more subtly, as in veiled comments, and also via unrecognized written dismissals of me in medical records.

It actually sent me into an emotional tailspin after the show - I was not expecting to relive that kind of past that I assume most of us, if not all of us, went through -

At the time, how could we know, especially since I didn't know I had anything at all - so my feelings were downplayed at the time -

However, now I feel my anger - and I'm still feeling it two days later -

It's PTSS - post traumatic stress syndrome I'm feeling -

Glad to hear you're alright, Lymetoo - what an ordeal this weekend -

I was just thinking - emotions feel like that too - a bit amorphous, fuzzy, hazy, then something can trigger them and feelings become clearer to the point they "touch down" -

I feel my anger touching down like those tornados - multiple tornados, for various histories of being disbelieved - - unclear issues in the past, but more clarity now as to what's been done to all of us - kaPOW, kaPOW!!

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Tincup
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Robin39573945,

It is shameful the abuse we've been subjected too and after more than two decades it is still happening.

I actually tried to get someone to watch the show here and they stopped me part way through, quite upset, and asked me WHY I wanted them to see it.

They said they don't want to see that suffering like was shown (too hard on them) and it was cruel after seeing what many patients (including me) had been through to watch the first lady get run through that same kind of nasty drill.

I do NOT like to see a doctor vs. patient interview anywhere. We never fare well in that situation and shouldn't be expected to or subjected to it.

A doctor should have been there to explain the cruelty and dismissals we are forced to endure for Dr. Phil, not a sick patient. That just isn't fair.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Lymetoo
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Yeah, it would have been great to have Dr B (the one on the show) be right next to her and be able to speak up for her. But she was not her Dr at the time.

It WAS very hard to watch that. It made me cry, especially to think of how many others are in the same way.. so much pain and so much suffering. It is cruel to let everyone suffer so much!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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-
Dr. Phil's bullying behavior not only perpetuates and gives permission for doctors to continue this -- all family members who just don't understand also now have the permission to just grill family members - or friends in like manner.

His behavior has brought back horrible memories for me literally, of nurses or doctors yelling - once even kicking me when I was on the ground with seizures, telling me to get up because they saw me "throw myself off a chair" when startled as they sharply called my name.

Surprise startles commonly trigger seizures for several who have such. How did they not know that?

How is they don't even know about hyperacusis?

Now, memories flood back of another time when a different doctor was able to see seizures in motion due to a car alarm outside cycling outside the window. I thought "finally, he can see what I've been telling him."

I got a registered letter 2 days later that he was firing me as a patient. I did manage to get it out of a the ND on his staff who'd I been seeing that the MD "had never seen a seizure like mine and questioned the authenticity" -

- I wonder if his having gone to YALE for medical school colored his views as Yale does not believe in the complexity of lyme and I guess he would have gotten the memo in his alumni magazines.

I was not there for lyme treatment as I knew he did not believe in it. But the (non-LL) ND there was at least helping with cranial-sacral therapy.

There are dozens of bullying or deep negligent experiences that I've had over decades of trying to regain my life. Dozens.

And I'm a very friendly, polite person. I never took on an angry demeanor. I just wanted to know what was wrong and how I could fix it. I just got clobbered and clobbered.

Dr. Phil has brought all that up again. But, if this is mentioned, then it all becomes "psychological" - ANYONE would be affected by this.

It just adds to the ongoing horror of it all for all who have "invisible" illnesses.
-

[ 04-16-2012, 01:55 PM: Message edited by: Keebler ]

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Keebler
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-
I do not have the energy to register and post at his site but I hope, somehow, he is made aware of this matter and his part in allowing it to continue.
-

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Robin123
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See - this is exactly what I'm talking about - we are all abused - thx, Tincup, Lymetoo and Keebler for your comments.

Keebler, I saw more thank you comments at his site than anything. So maybe I will revisit the site -

My LLMD said that where he is, the doctors give him a hard time, so he can only imagine what the patients go through. Well, we don't have to imagine it - we live it.

There's a focus on bullying of younger kids these days, with a movie out about it -

I think we need to know what people who counter bullying know and teach.

I know one thing - when I've stood up to bullying, it often stops.

In this case, we're fighting systemic abuse, but still, when I've stood up for what's happening to us, people often quiet down 'cause they see I'm not taking it anymore.

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dbpei
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I agree with Lymetoo about why Dr. Phil had to ask that question.

If he didn't ask it, he would be criticized for being biased by his colleagues and the public would be less likely to believe her story.

I would not be surprised at all if he told her ahead of time that he was going to have to ask that question.

It was evident to me that he was trying to sway the public to believe her story by the way that he spoke of his star staff member that he has had for decades - stressing that she could not possibly fake any thing like this.

If he was trying to bully her, he wouldn't have had that director of The Doctors on the show, stating that she did not believe that poor girl was faking it.

The show was very hard to watch, though. I wish he had less footage of the seizures and more discussion about the barriers to treatment and diagnosis.

By the way, that letter communicated so perfectly what most of us want to say and can't because of our illness. So glad it was sent to Dr. Phil. Thanks for sharing.

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Keebler
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-
It should not be required to actually commit (or even stage) a crime in order to communicate the issues & complexities involved.
-

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Lymetoo
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quote:
Originally posted by dbpei:
[QB] I agree with Lymetoo about why Dr. Phil had to ask that question.

If he didn't ask it, he would be criticized for being biased by his colleagues and the public would be less likely to believe her story.

I would not be surprised at all if he told her ahead of time that he was going to have to ask that question.

It was evident to me that he was trying to sway the public to believe her story by the way that he spoke of his star staff member that he has had for decades - stressing that she could not possibly fake any thing like this.

If he was trying to bully her, he wouldn't have had that director of The Doctors on the show, stating that she did not believe that poor girl was faking it.

The show was very hard to watch, though. I wish he had less footage of the seizures and more discussion about the barriers to treatment and diagnosis.

By the way, that letter communicated so perfectly what most of us want to say and can't because of our illness. So glad it was sent to Dr. Phil. Thanks for sharing.

-
I agree with everything you said. I really do think he or a producer warned her about the questions. They are certain to have viewed her video way back and discussed what questions to ask.

And I really feel she was warned, or else she would have possibly throttled him right then and there. [Wink]

She held her ground and did not waver. That was important for the viewers to see.

I had a little "argument" with a stupid Dr once.. I won, he lost! I stood up to him and then my husband called him and chewed his butt. [Big Grin]

--in between-- I cried.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Carol in PA
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quote:
Originally posted by dbpei:

It was evident to me that he was trying to sway the public to believe her story by the way that he spoke of his star staff member that he has had for decades - stressing that she could not possibly fake any thing like this.

Oooohhhh.....so Dr. Phil had a personal connection with this disease.

I think that's important, as he would be more likely to invest the effort in discussing Lyme if he saw it for himself.


quote:
Originally posted by Keebler:
-
It should not be required to actually commit (or even stage) a crime in order to communicate the issues & complexities involved.
-

Yes, true, but people tend to understand more easily when they can see it for themselves.

Al Gore couldn't get people to understand his points about climate change until he presented them in film.

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Lymetoo
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quote:
Originally posted by Carol in PA:

Oooohhhh.....so Dr. Phil had a personal connection with this disease.

I think that's important, as he would be more likely to invest the effort in discussing Lyme if he saw it for himself.


-
You got it!

--------------------
--Lymetutu--
Opinions, not medical advice!

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katiebobatie
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"Teenagers are treated with antibiotics for years for acne, but that same treatment is refused to homebound Lyme patients suffering with seizures and debilitating pain. It's completely unbelievable and inhumane."

such a good point!!!

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Keebler
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-
The thing that is irritating and dangerous, beyond the lack of availability is a doctor who might be sort of open to the idea thinking that it's just as simple as a script for just one Rx.

Most of the doctors who are against long term treatment do not know that it's a very complex protocol that has to be tailored to the individual and shifted frequently.

They also don't understand the support methods that must be in place.

So, in addition to the other REAL reasons, there is the misconception that treatment is easy and if an easy treatment has been tried and failed - well, then, the patient must be faking.
-

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Robin123
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Follow-up: I revisited the site and asked Dr Phil not to attack a sick patient like he attacked Stephanie, asking her if she was faking it when she was having Lyme seizures.

I asked him to respect sick patients and ask them what they're going through. I also made the suggestion Tincup made, to have a knowledgeable doctor present and capable of answering medical questions.

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Keebler
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Thanks so much, Robin. I really appreciate your having done that - and then letting us know. I can't read the comments at his site (or post there), so it's good to know these concerns have been stated.
-

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fourwinds
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I think that's a great letter too.

I watched Dr. Phil as well and FWIW, I think I agree that he wasn't attacking or abusing Stephanie.

Another point that REALLY gets missed as well, is the insurance companies pay more for all of the

tests, doctor visits to specialists, etc., (who tell us "nothing" is wrong with us), or prescribe the wrong medications...

Most antibiotics are inexpensive compared to all the hoops they DO pay for us to jump through and not get well -- yes, they want to keep us sick.

Posts: 396 | From EAPennsylvania | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Rivendell
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And yes, I believe that Dr. Phil had to appeal to his colleagues. Not easy to do the right thing in this world.
Posts: 1344 | From Midwest | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
   

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