posted
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:
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) Posts: 10 | From NY | Registered: May 2008
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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.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bettyg
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posted
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!
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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.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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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.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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posted
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.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
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. Posts: 83 | From New Jersey | Registered: May 2008
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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.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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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.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Great idea Kam! I just posted a poem I wrote too. 130 is the current count.
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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kam
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posted
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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posted
alison,
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...
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Betty, thanks for the kind words about my lil' poem!
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!!!!!!!!!!
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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bettyg
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posted
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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Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bettyg
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posted
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?
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!
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.
Or Pixie Dust Syndrome
Or Hobgoblinia
Or Plastic Pink Flamingo Phenomena
Sigh ...
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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bettyg
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posted
allison,
1 setting; wow; your brain was really cooperating that day when you wrote this!!
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