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» LymeNet Flash » Questions and Discussion » Medical Questions » Oprah/Dr. Oz/Lyme Disease (Page 2)

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Author Topic: Oprah/Dr. Oz/Lyme Disease
kam
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Read it Richard and responded. You are number 115.

Good luck to you.

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HopefulinNY
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Below is the paper I typed up to have my doctor post, and then my friend is faxing it to him for me. If anyone wants to copy it, and ask their doctor to post it and make copies for people to take, feel free......


Please Help!


Dr. Oz (from Oprah's show) recently interviewed the producer of UNDER OUR SKIN (Lyme documentary) on the Oprah XM radio show. He seems very interested in finding out more about Chronic Lyme Disease. He has asked that anyone who has improved with long-term antibiotic treatment, to please e-mail him with his/her experience. The hope is that the more e-mails he gets, the better the chance that he will continue to search for the truth about Chronic Lyme and TBD's. The hope is also to see this eventually discussed on the Oprah TV Show.


Here is the website that links you to e-mail Dr. Oz and Oprah:

http://underourskin.com/blog/?p=83

You can also listen to the first 10 minutes of the interview at this site.

(It didn't copy/paste quite as I had done it, so you may need to play with it.)

--------------------
Lyme diag. 2005, confirmed with LLMD Dec. 2007, 2 years of Marshall Protocol, Bicillin,mal.Dr.Z herbs, EBV, HHV-6,Babs,Bart?(3 kids positive for Lyme)

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kam
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This is good. Thank you. I will copy and paste and fax it to my lyme doctor's as soon as I am able.
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bettyg
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lymemomtoo wrote me today; she sent hers last night!!


kam/others ... do you remember seeing mine posted there? since i've been without a home pc for 2 weeks, i may have fallen between the cracks.

i do know i posted my same story in 2 areas...
thanks anyone!

i'll read kam's updates here to see if anyone FINDS MY "BETTYG" NAME or bettyg in iowa.... big thanks! [group hug] [kiss]

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kam
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Betty, I don't recall seeing your post but that doesn't mean it is not there.

To the person who came up with the sample letter to send to our LLMD's office.

I copied and had it faxed to my LLMD's office.

WE only have 117 posts as of Friday, Dec. 12th.

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kam
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118 posts this am Saturday, Dec. 13, 2008

Oprah is showing reruns so I am assuming they are getting ready to tape new shows.

Under Our Skin would be a good idea..especially since it is coming out in Theaters in March.

along with Pam W's book.

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kam
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119
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kam
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121 posts on the Oprah board. I keep thinking it should be at least over a 1,000 by now. Slow going.
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NJLyme82
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I tried to post something but it wouldn't go through. I wrote him a letter though.

I don't know, quite frankly I think this whole "numbers" thing is condescending.

The legitimacy of our disease is going to be determined by the number of responses on a talk show discussion board? That's what it's come to?

Forget the numbers. Whatever happened to just LISTENING people and taking their word for it?

In my opinion this is all just the bystander effect. Dr. Oz doesn't believe that such a large crisis could happen and nobody else is speaking up.

I mean don't get me wrong, if Dr. Oz is going to be the first widely recognized public figure to speak out about this then he will be a true hero.

Just show us some respect thats all I ask.

--------------------
I was diagnosed with and treated for late stage Lyme in 1991 with 6 weeks of doxycycline. Initially felt better, but then developed health problems that last until today.

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kam
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OK it is that pesky lady bringing this up again.

124 this am on the community board.

Not able to read the posts this am. But, there was some pretty good ones over the weekend.

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kam
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128 this am.

Hear is a poem that was posted on the community board.

Person could not get through on the email to Dr. OZ

Spacing it for us neuro lymies who are reading challenged

Like Dorothy, I write this to you for a cause
In hopes to reach the wizard, dear Dr. Oz.

Help us help others, the 'powers that be '
Give them hearts, give them courage, and wisdom to see

That we're human beings, we're all very sick
Our road ahead? Not one yellow brick

You & Oprah can help ,to you both I implore
Do the right thing, and please don't ignore

To just see your name gives us with Lyme
New hope to what's commonly viewed as a crime

2000 characters cannot explain
Lifetimes of suffering, illness and pain

Each story unique,yet the basis the same
A disease, the ignorance, the truth, and the blame

Why in this country which is so' great '
Do money, politics, and deaf ears decide fate?

My case is one where most would assume
That i'd never have thoughts of impending doom

I'm a nurse and a mother, with two little boys
My husband's a doctor, so why all the' noise?'

He's a good and smart man, for better or worse
Being married to him though has been my curse.

No fault of his, it's just our profession

To ignore the signs, the crying, my now obsession

My doctors only thought for a very short while
She's smart, she's resourceful, she'll be fine'; never once going the extra mile

They should keep trying, testing, help to no avail

Think outside the box, pursue, succeed, not fail

I know not what it's like to have a 'good' day

My beautiful boys, with them I can't play

My husband no longer has a wife

He sees me existing, yet without ' life'

10 years I have suffered and wont get them back

Feeling bad, begging others-gain wisdom not lack

Knowing we're ill, but failing to act

Chips away at our souls, our minds, it's a fact

Our fog covered brains leaves life pretty hazy

Others think most of us simply crazy

We start to believe them, give up, staying sick

Yet we know in our hearts that it started with a tick

As small as a grain of pepper, or sand
Yet a deadly epidemic that covers this land


The land of the free, home of the brave

A land where many times a doctor feel like a slave

Hands tied, constraining rules of managed care

Not allowed to whole heartedly do their share

We know that the system has great flaws
Who is to blame, and what is the cause?

With so many sick, and so many grieving

Why isn't anyone truly believing?

We have so much proof, yet continue to fight

Some of us lucky, a few hear our plight

For those with no resources, education, or belief

More so they will suffer, in pain, no relief

Some have MS, some Alzheimers disease
ALS is another misdiagnosis - 'if you please'

It's alarming that many times more than 'not'

Its the Lyme spirochete that has to be fought

Mainstream is failing us in this day & age
So on goes the battle, engulfed with our rage

{color:#993366}Please help the hundreds of thousands , probably millions of Lyme patients, and help our society by simply giving the gift of knowledge.

I sincerely appreciate the time that you and Oprah have donated to 'listen'.

You have done, and will continue to do great deeds. For that, we are grateful.

I fear my children will not know the real me, ever. So please.

Help us all. We need every little bit we can get. What an opportunity , a platform such as Oprah to hopefully shed some light.

Sincerely, Christina in Louisiana


..I hope Christina doesn't mind me copying and pasting her post.

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AlisonP
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Great idea Kam! I just posted a poem I wrote too. 130 is the current count.

[Smile]

Alison

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

The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow

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AlisonP
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Great idea Kam!

I posted a poem I wrote. Last count 132 I think.

[Smile]

Alison

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

The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow

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kam
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Thanks Alison

Found your poem. I found it fun!

Dec 16, 2008 2:18 PM | In response to: claireeee

A Lyme Poem


You don't believe in Lyme disease, but it believes in me.

You're skeptical, you say, but I don't have that luxury.

Twelve doctors, Twelve diagnoses, and years of misery

Do you know what pain is? Look in my eyes, you'll see.


They call it Lyme disease, but oh, it's so much more

Than a fuzzy little happy tick, showing up at my front door.

I was never even bit, though "Impossible!" you may roar,

Nor my three siblings, all sick too, it chills me to my core.


I've got co-infections, no immune protection, no CDC affection,

Just plenty of time

Because of the Lyme

Flat on my back for reflection


A champion to my cause,

My nurse practitioner is my savior

We share many guffaws

About `Antibiotic seeking Behavior'


And how bout those of us

Accused of strange psychoses?

When all we are is sick with Lyme

Not `delusional parasitosis'?


Get a grip, CDC

You haven't helped me

Millions sick and you don't see

"The ELISA test useless?!

It can't be, oh golly gee!"


The fastest growing vector borne disease

Is growing oh so fast

And yet you pretend it's nothing

By sitting on your ... um ... posterior.


We are so sick

It's spreading oh so quick

You couldn't care a lick

You're all a bunch of ... um ... people who should be better informed about the nature of this extremely infectious and debilitating disease, spend more money on real research, stop attacking doctors who are actually trying and succeeding in treating infected people, and alerting the population to this international health crisis. Ahem.

Why do people not know, that you can get Lyme from mosquitoes?

Or is this information that you somehow have vetoed?

What about gnats, lice or fleas, or blood donations - please!

Let people know so that this unchecked spread can cease.


Two weeks of antibiotics cures this?

What, are you completely mental?

This is obviously not true

Unless you have the brain of a lentil


You say I have chronic fatigue,

I say it's an infection

You say I'm out of my league

I hear your snide inflection

(My $200 visit: quite quick

Me: still sick)


You say I have Fibromyalgia

Yet you don't even know what that is!

I can't find anything to rhyme with this,

But I bet it's Lyme disease.


You say I have MS

You point to all the lesions

Which, coincidentally, are the same in Lyme

How about using logic and reason?


You say I have Reynaud's Phenomenon

Now you're just making that stuff up

Throwing syndrome after syndrome at me

Hmmm, avoiding the real problem much? Yup!


This poem is a bit tongue-in-cheek

This disease made me quite silly,

I think that I shall scream and scream

From taking all these pill-ies.


Just remember the next time a loved one gets sick

With a mysterious malady,

You didn't believe in Lyme disease,

But it believed in me!

Written by Alison in Fairfield, CA

[ 19. December 2008, 09:03 AM: Message edited by: kam ]

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bettyg
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alison, [group hug] [kiss]

great poem!! would love to see your name with it so it doesn't lose WHO wrote it!!

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kam
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Only 133 people have responded. I sure hope Dr. Oz received more emails...
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AlisonP
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Betty, thanks for the kind words about my lil' poem! [group hug]

I have to say I am astounded and quite saddened at the lack of replies to the Lyme Disease topic on the Message Board at Oprah's site.

What a golden opportunity we have here, if only we could get the numbers of people responding!

I just posted again about Alice Walker having Lyme since she is one of Oprah's heoroes and wrote the Color Purple.

May I recommned to people that if you don't have the energy to post your story, and even people who have posted already, if you can think of a short but interesting thing to post abotu Lyme, go and post it!

Since this is the media, there will be producers and such scrolling through and bullet points or quick soundbite-esque info might really help.

If we can post things that are informative but fast and easy to read, I think it could really make a difference.

c'mon, people!!!!!!!!!! [woohoo]

[Smile]

Alison

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

The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow

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bettyg
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allison,

i'll have to go back and read your poem; read it after not being on itnernet for 1 wk; 3 wks. with my daily checkings, and i was tuckered out barely keeping my eyes open.


i'll put my story there again; not sure i got it in correct spots since i've been offline!

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kam
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bettyg
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kam, 134 stories there NOT including mine!


thanks for allison's name on HER wonderful poem!

allison, how long did it take you to write/rhyme this?


kam, i posted the below; it might have been posted earlier; i don't know, and i used CHRISMAS "LYME" GREEN !!
*************************


Dr. Oz, a big THANK YOU for your 11-26-08 radio program with Kathy Fowler and Andy Wilson, producer of UNDER OUR SKIN lyme documentary.


I tried to listen to this live 1 am, but I'd NEVER been on this site before and it wasn't user friendly for this neuro lyme patient of 39 years! Today, I did find this 9.5 minute clip of it, but how can I find the entier 60 minute version?


http://www.oprah.com/article/oprahandfriends/moz/20081126_oaf_moz


I was bitten by a tick off my folk's LIVE CHRISTMAS tree in 69! Diagnosed 1st with mono/epstein barr virus. It took 34.5 years to be correctly diagnosed by seeing 40-50 drs. It was a fluke I'd heard of western blot igm/igg blood testing with IGENEX, CALIF. So I was tested, and almost postive for each protein band.


I worked this entire time from being bit at age 21 until age 49 when I had to QUIT my state job with NO benefits although I had worked longer than 30 years. I was lucky; hubby retired w/full benefits yr. prior so I was covered as spouse EXCEPT BCBS WON'T PAY ANY LYME EXPENSES for appts., treatments, etc.


I'm fighting to get a recent colon poilyp tissue to be tested for ENTEROVIRUS, but these UNTRAINED drs. do NOT think it's necessary and have NOT personally talked to me about this.


Every step we take with CHRONIC LYME is fighting to get what is due to us! I can't believe all the HOOPS WE HAVE TO JUMP THRU. It took me 5 years of hell to be approved for SSDI, disability insurance benefits.


Thank you again for LYME program; please do this again to continue educating medical and public about this God-awful debilitating disease! [Smile]

IOWA BETTY....

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AlisonP
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You guys are so sweet!

Betty -- I actually wrote it in one sitting one night.

For several days, the first line had been bumping around in my head -- you don't believe in Lyme Disease, but it believes in me. I was so very angry and astounded that this pandemic was being ignored, and frustrated as heck that people were treating me like I was telling them I had Tooth Fairy-itis. [loco]

Or Pixie Dust Syndrome

Or Hobgoblinia

Or Plastic Pink Flamingo Phenomena

Sigh ... [Big Grin]

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

The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow

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bettyg
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allison,

1 setting; wow; your brain was really cooperating that day when you wrote this!!

please submit it also to the PUBLIC HEALTH ALERT newsletter! www.publichealthalert.org


i know editor, dawn irons, would love it!

thanks for sharing with dr. oz/oprah, and this lyme board! [group hug] [kiss]

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bettyg
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up for CHRISTMAS members coming home from college and not having a chance yet to send in their comments [Smile]
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