WE only have 46 people now who have posted for ALL of the U.S.
We need more. People need to know.
This is a copy and paste from Ellen's post of what Dr. Oz is asking:
At the end he asks for letters from us telling him if we had long term antibiotic treatment and were cured by it.
Well, he's still learning, so we need to educate him that even those of us who were not cured were helped by long term antibiotics. We need more research so we can have a cure.
[ 11. December 2008, 10:01 AM: Message edited by: kam ]
Posted by KS (Member # 12549) on :
I sent an email but I don't see it posted here....hmmmm, wonder if mine didn't get through or maybe some of us are posting somewhere else (I just used the link provided in a previous thread).
Posted by kam (Member # 3410) on :
KS, There is a site to send an email to Dr. Oz.
We can't really know how many people have sent in emails.
But, at least we can see how many are responding on this site.
If I had known at the time, I would have copied and pasted my email to DR. Oz and posted it on this site too.
[ 04. December 2008, 08:43 AM: Message edited by: kam ]
Posted by psano2 (Member # 11711) on :
I think it's been alittle confusing, because there was another link posted which I went to, but limited comments to like 160 characters, or something like that.
So of these other two links, which one is the best to post on? or should we just post on all of them?
Patti
Posted by kam (Member # 3410) on :
It is confusing. I went back to the email I received and am copying and pasting here:
It is written by a person named Krista in TN
I am concerned that not enough people have commented on Oprah's Dr. Oz forum page. I just visited the site to make sure that the comment I wrote last night was approved by the monitor and posted - and their are only 34 comments!
I remember someone saying that Dr. Oz wanted to see how many emails or letters he would get about the topic after his radio show to base whether or not he would try to get Oprah to do an TV show on Lyme.
Maybe people are writing letters/emails directly to Dr. Oz and/or Oprah, but if the low number of comments on Oprah's "community forum" is any indication of the number of letters going directly to them, then we are in trouble...
I personally wrote a direct letter to Dr. Oz and then posted almost the same letter on the community forum page.
There are thousands of us chronic Lyme patients!
This is our biggest and best opportunity to get massive media attention, but I feel we have to convince them with numbers - that this is a huge problem that deserves their attention. As we all know, Oprah and her show is no stranger to personal tragedies, but I believe it is the number of our tragedies that will most influence their willingness to give us a forum.
I don't want to see this opportunity pass us by - as there probably won't be another train coming by like Oprah's for a long time...
Got this from Ocean's post. I am waiting for all the commercials to end so I can listen to Oprah's XM with Dr. Oz and Lyme
Posted by tdtid (Member # 10276) on :
Good job keeping the links up for those of us in slow motion.
I did get to listen to the whole program a few days ago and hopefully if enough of us can start sharing our stories, Dr. Oz will start looking deeper into this.
It's obvious that the documentary intrigued him enough to do this radio show. Now if he could help us reach an audience that goes further than a radio station many don't have access to.
He's got the right connections with Oprah and we know she highly respects his medical expertise, so I say keep writing. Thanks for the links.
Cathy
Posted by jennyflyer (Member # 12792) on :
I sent an email a little while ago. Any way to check that it went through?
Posted by kam (Member # 3410) on :
Just finished listening to it. Dr. Oz does request to contact him if you have lyme disease, how you are treating it, how you are doing...darn brain is going.
Posted by kam (Member # 3410) on :
Jennifer...no way to check if it went through.
That is why I think it is good to post on the web site:
Dr. Oz is looking for numbers. I would think if he gets enough numbers he would get together with Oprah.
I would do both...send an email to Dr. Oz and copy and paste it and post it on the Oprah Web Site. IMHO
Posted by lpkayak (Member # 5230) on :
well mine isn't there either. it took forever to get it to go thru and now it isn't there. how did you get so many words??? it kept telling me less than 2000 characters...i cut it way back-and now its not ther
and that clariiiii or something is on more thant once and not about lyme
Posted by kam (Member # 3410) on :
so sorry yours didn't go through and how difficult it was for you to type.
if you think of it try again later.
that word count thing is tricky.
before lyme i use to be able to use a program that counted how many words I had typed.
after lyme, i dont' have a clue how i did that.
Posted by karatelady (Member # 7854) on :
Count me in. I sent mine to the Dr. Oz link.
I did the same thing, kayak ~ it was hard keeping it less than 2000 words
I think they got through. It's just a different link.
Sandy
Posted by kam (Member # 3410) on :
Hurray. Glad it went through.
WE NOW HAVE 46 as of Wed night.
[ 04. December 2008, 07:36 AM: Message edited by: kam ]
Posted by kam (Member # 3410) on :
59 as of Thursday Morning.
If someone listens to the program again could they write down what exactly Dr. Oz is asking in response.
I think it had to do with treatment and what is working.
59 responses is still very low when lyme doctor's are seeing 1,000's.
So, moving this to the top again.
Posted by kam (Member # 3410) on :
I need to go back and address this issue with an email to Dr. oz and copy and paste it on the Oprah forum
At the end he asks for letters from us telling him if we had long term antibiotic treatment and were cured by it.
Well, he's still learning, so we need to educate him that even those of us who were not cured were helped by long term antibiotics. We need more research so we can have a cure.
Posted by atheana (Member # 14273) on :
Amazing"We are finally being heard".
Sent my story off today! Atheana Posted by disturbedme (Member # 12346) on :
I agree - this is VERY confusing.... I also sent my story, but sent it through the different link (that limits it to 160 characters) and NOT with the message board.
Not sure if I need to write it on the board TOO but I'd say that just because the message board only has such and such a number, there are probably many more letters written, but not all at the message board.
Posted by kam (Member # 3410) on :
Sent a second email to Dr. Oz. Forgot to copy and paste it to the message board.
Thanks for sending in your stories AThena and Disturbed me.
I like the HElen Keller quote.
Posted by kam (Member # 3410) on :
Copy and paste from an email from Under Our Skin
We're delighted to tell you that UNDER OUR SKIN will be released on a limited basis in theaters across the country in March 2009.
Finally, the film and the Lyme disease issue will be brought before the general public and into public consciousness--a necessary step to create change.
But the success of the film will depend on high box-office numbers.
So we'll need you to flood the theaters during opening weekends--even if you've already seen the film.
This is the only way to ensure that the film will open in more and more markets and that Lyme disease will be seared in the consciousness and conscience of Americans.
At the end of January, we temporarily will be suspending DVD sales and community screenings, as we gear up for our nationwide, theatrical release of the updated film.
Posted by mojo (Member # 9309) on :
I sent an email a few days ago and just posted to this link.
I hope more people respond. I have a feeling he got a lot of emails. I hope so!
Posted by kam (Member # 3410) on :
Thanks Mojo.
I just recalled that I was told at one time when writing to put your title under your name. It brings more strength to the request or comment.
I was thinking if we all would do this, it would help us to become more real.
For ex:
I would sign it Katherine State of CA Educator (before coming down with lyme)
Posted by AlisonP (Member # 7771) on :
Here's a link to notes I took from his show while I was listening to it. If you scroll down to the bolded parts it talks about what he said when he was asking people to write in.
Thanks Alison. Copied and pasted part of your notes here.
Also thanks for posting the URL to your notes.
Oz: asks for emails to be sent to Oprah.com about people with chronic lyme and if they cured it and how.
Oz says he is *very* interested in the NUMBER of e-mail responses he gets (HINT HINT PROPLE).
I just read the last entry from a person named Robin on the site. It was a powerful post.
Posted by kam (Member # 3410) on :
I was not going to send the radio show and request to write in to one of my email friends who is now fine.
I thought it was not her fight anymore.
I was wrong.
She is just the kind of person that does need to tell her story.
So, if you are in contact with others who have regained their life...please contact them.
Posted by DebAz (Member # 18039) on :
I wrote in my story.. > If your counting ..
Deb
Posted by kam (Member # 3410) on :
At the close of Lyme Street on Thursday, Dec 4, 2008 we have 69 points.
Posted by kam (Member # 3410) on :
Thanks Deb.
Bringing this to the top againt this am. I know that when I was really struggling it would take days before I would have what it takes to post and I would forget to post unless I saw another reminder.
Fri, Dec 5, 2008...Still only 69 posts.
Where are all the 1,000s of people with lyme disease.
I have heard of others who know of someone who had lyme disease and are well now. These are the people we need to post too.
HOping that Oprah will do a show on this and that it will result in the bill being passed to help with better testing, education of medical field and better treatment.
It also will put pressure on the person who has tabled the bill.
That is just one reason to get major media converage.
Posted by kam (Member # 3410) on :
74 posts at the close of lyme street TGIF
I wonder how long they leave the thread open.
I think the first post was on Oct. 30th.
Posted by kam (Member # 3410) on :
75 posts on Saturday Morning. Bringing this up for the weekend crowd.
Hopefully, Dr. Oz received more emails than this.
Posted by tickssuck (Member # 15388) on :
Hi,
In case you're counting....I sent in an email too, just didn't copy and paste to have it show on the other link....but...I sent one in! TS
Posted by kam (Member # 3410) on :
TS Hopefully, they received much more emails than posts.
POsts this Saturday evening are only 76.
Posted by lpkayak (Member # 5230) on :
mine still isn't on there-where do you type? why is that old post from claireeeee there? why is nhlyme's post so wierd???? i want to help but they don't make it easy-6 people in my family are dx and in treatment
Posted by cs (Member # 15270) on :
I sent him an e-mail, but didn't post to the thread. I also sent a copy of Cure Unknown to his Columbia address, now we need to convince him to read it - I think that would go quite a ways in convincing him to delve into this further. -karen
Posted by hurtingramma (Member # 7770) on :
Great idea cs.
I also posted to the Dr. Oz site first, then went back a posted on the Oprah site.
You have to register on the Oprah site and it takes them a little while before you see your post.
We need MORE posts people!
Posted by kam (Member # 3410) on :
Yes. That is a great idea CS. I hope he gets it adn reads it.
Sunday am 80 posts. I am beginning to think that lymenet just is the tip of the ice berg.
I keep wondering where all these 1,000's of patients that lyme doctor's have go to for support.
Posted by kam (Member # 3410) on :
Bringing this to the top again. Only 81 posts now.
The last post I tried to read brought tears to my eyes.
Don't mean to be a pest about this. But, I do know in the past, it would take several times of reading a post before I was able to respond due to health.
So, want to keep this in the lyme light
Copy and pasted this from general
To me the first rule of Lyme activism has always been, "when you're drowning and God sends you a rowboat GET INTO IT."
The trick is to recognize the rowboats..
Dr. Oz's interest in us is a whole ocean liner.
Please write. Ellen
Posted by kam (Member # 3410) on :
At the end he asks for letters from us telling him if we had long term antibiotic treatment and were cured by it.
Well, he's still learning, so we need to educate him that even those of us who were not cured were helped by long term antibiotics. We need more research so we can have a cure.
This is a huge opportunity for us. With Dr. Oz's popularity, winning him over could be the tipping point for us. Please, please write to him so he gets an idea of how many chronic Lyme patients there are. https://www.oprah.com/plugform.jsp?plugId=495&referer=
Thanks, Ellen
Posted by kam (Member # 3410) on :
Copy and pasted this from Activism. Sorry forgot who the poster was.
We have just heard that we are on Oprah's radar.... that is a big deal. But so far, there has not been an impressive enough response to Dr. Oz's show.
We need much more. Get your friends, family, co-workers, doctors, nurses, anyone and everyone you know to write Dr. Oz.
There are Lyme groups around the world -- everyone needs to be passing this info along and getting everyone to email in.
Can everyone post it everywhere.... at their doctors offices, email friends and people who know what you are going through to contact Oz. Getting on Oprah would be a very huge deal.
We're delighted to tell you that UNDER OUR SKIN will be released on a limited basis in theaters across the country in March 2009.
Finally, the film and the Lyme disease issue will be brought before the general public and into public consciousness--a necessary step to create change.
But the success of the film will depend on high box-office numbers.
So we'll need you to flood the theaters during opening weekends--even if you've already seen the film. This is the only way to ensure that the film will open in more and more markets and that Lyme disease will be seared in the consciousness and conscience of Americans.
Posted by lpkayak (Member # 5230) on :
well-i tried again. must have been the 4th time. it's still not there.
someone should tell him there are others who want to post but can't either because of a site problem or because of our lyme brains
Posted by kam (Member # 3410) on :
That would explain why the numbers are so low.
Posted by kam (Member # 3410) on :
84 posts at the end of today, Monday, Dec. 8th.
I know we could fill the audience with lyme patients.
I also had to try several times today to post.
Posted by janis1023 (Member # 15942) on :
OK. I sent mine. Hope it helps, cause I sure hate reliving this nightmare.
Jan
Posted by onthemend (Member # 13454) on :
Exactly, Janis. It is difficult to give MORE time to this disease than it has already stolen from all of us. But I just keep thinking of those who are now where I was three years ago. It is so hard to go back, but we all have to do it if this is going to get fixed.
I, too, posted at length on the Oprah.com site vs. Dr. Oz radio show site. It gave me the ability to (partially) tell my story.
This is definitely a great chance for us and the Lyme victims to come.
otm (Cheryl)
Posted by kam (Member # 3410) on :
gforce posted this under activism...
Dr. OZ is very intrigued with 'Under Our Skin'. It was on his radio show.
Please take a moment to write a comment to Dr. OZ.
There have only been 30 responses. We need 100's to get it on Oprah!!!!!!!
I also had the thought it would be good to post some of the video's we have.
Posted by kam (Member # 3410) on :
Copy and paste from an email I received
Lyme community! Help us by sharing your story! Contact Dr. Oz to get Lyme disease featured on the Oprah Show
For Immediate Release
On November 26, 2008, Dr. Oz, part of the Oprah and Friends Network, asked for people to email him to learn how extensive Lyme disease is in the US. Everyone is encouraged to pass this on through email lists so everyone can contact Dr. Oz. Click here to email your Lyme story to Dr. Oz.
You can listen to Dr. Oz's Lyme disease broadcast here. The show features Andy Abrahams Wilson, Producer/Director of Under Our Skin and Turn the Corner's 2008 recipient of the Vision of Hope Award. It also features Kathy Fowler, a 2008 Courage Award recipient.
During the broadcast, Dr. Oz also asks Lyme patients in the audience to share their own stories. With enough of a response from the Lyme community, we hope to pique the interest of The Oprah Show, where Dr. Oz is a regular guest contributor. So be sure to tune in and write in! And remember to thank Dr. Oz for his interest in Under Our Skin and Lyme disease.
Take Action!
C Email your Lyme story to Dr. Oz
Share your comments on Oprah's Community Forum
Click here to listen to Dr. Oz's Lyme disease show
Donate to Turn the Corner
Visit the Turn the Corner website
_________________________________________ www.turnthecorner.org Posted by groovy2 (Member # 6304) on :
I wrote mine and sent it--Jay--
Posted by stymielymie (Member # 10044) on :
moi aussi madame kam
docdave
Posted by kam (Member # 3410) on :
Doc Dave and Jay. Glad you were able to post too.
Having trouble with server so now that I am here...
95 posts on this Tuesday, Dec 9, 2008
Wouldn't it be great if we could all meet each other while being part of Oprah's audience!!
A get together some time would be good too while we are there...health holding that is.
Posted by kam (Member # 3410) on :
Copy and pasted from Oprah's web site.
Mandy's mom in the film UOS
December 8, 2008
Dear Dr. Oz:
I am the mother of Mandy Hughes, who is featured in the documentary "Under Our Skin" and frequently the spokesperson at events and screenings related to the documentary.
As a parent, I had/have all the hopes that my vibrant, healthy and intelligent child would grow up and thrive. Going from a dream of working in the profession of her choice, to within a few short years, wheelchair bound and in extreme pain, which you have seen in the documentary, cripples an entire family.
What is not seen are the personal struggles/tolls taken on families both emotionally and financially seeking out treatments that the Healthcare community refuses to acknowledge in hopes that this will all "just go away". The fact is that it will not go away and neither can we.
We also have to protect the physicians who are willing to treat the infected patients. Allowing them to be "sacrificed" will cost additional lives.
To whatever extent your wider audience can benefit from learning about this insidious disease could possibly be the "push" we need to finally get our arms around this new horrific epidemic.
I know that Andy Abrahams Wilson, Mandy Hughes and a number of other highly qualified professionals would be truly grateful for the opportunity to be interviewed and heard by you.
PLEASE consider our request. As Mandy said: LYME - "Listen You Must Educate."
Thank you.
Linda Brace
Posted by kam (Member # 3410) on :
97 posts this am.
Posted by onmyway (Member # 17607) on :
Is there anyway we can attach the petetition that some 6000 people signed a while back?????? That sure would show him how many people are effected by this awful disease!!!! Just a thought!!!!!
onmyway
Posted by Lymetoo (Member # 743) on :
Is it necessary to post it on the message board?
Posted by kam (Member # 3410) on :
I don't know TuTu. But, I would think it would be a good idea.
I assume Dr. Oz's staff is reading his emails.
And Oprah's staff is reading the posts.
As far as posting the petition, it is worth a try.
I have tried posting the email I have gotten lately from Pam W's book but it was not accepted.
Posted by kam (Member # 3410) on :
99 posts at the closing of Wed, Dec 10th.
this still does not even cover one state
Posted by kam (Member # 3410) on :
In case you are missing it...I have copy and pasted and put in more spaces for the emails that have been coming this week for Pam's book.
Check it out. Tres bien
Posted by kam (Member # 3410) on :
We broke a 100. There are 101 posts on this morning of Friday, Dec 11th.
Posted by HopefulinNY (Member # 15425) on :
I just left a message with my LLMD explaining the Dr. Oz broadcast and what he has asked for in e-mails. I asked if he might be willing to post this info. in his office. Just think how many more responses will be sent if many of us make this request. It doesn't hurt to ask!
Posted by kam (Member # 3410) on :
Excellent idea!!
Posted by lyme4 (Member # 10723) on :
I go the link put do not know how to add my comments. I do not see how you can add your comment.
Please someone help.
Thank you Lyme4
Posted by lyme4 (Member # 10723) on :
I go the link but do not know how to add my comments. I do not see how you can add your comment.
Please someone help.
Thank you Lyme4
Posted by lyme4 (Member # 10723) on :
I go the link but do not know how to add my comments. I do not see how you can add your comment.
Please someone help.
Thank you Lyme4
Posted by kam (Member # 3410) on :
Try clicking on the link.
Then clicking on reply.
A page will come up asking you to join.
Click on join.
Fill out the info
Then, I think it takes you back to the place for comments.
You might need to do this when your brain is working better.
It can be tricky for a lyme brain.
Posted by kam (Member # 3410) on :
107. Re: Doctor Oz discusses Lyme disease and the OK WE now know someone from Oprah's staff is reading the messages...or at least the latest one.
movie Under Our Skin Dec 11, 2008 12:25 PM | In response to: danaz8 Hi danaz8!
Welcome to Oprah.com. We're glad you found us! There are many wonderful and supportive members here at Oprah.com. Please know that we hope good things for you.
~Harpoboard1, Oprah.com Community Moderator
Posted by hurtingramma (Member # 7770) on :
Bumping up - come on people - the count is only 107. Let's get those numbers up!
Posted by kam (Member # 3410) on :
I am not able to fax a flyer to Dr. H's office in CA so he can post it in his office.
Anyone else able to do this today?
How about Dr. S?
Dr. G?
Etc. Etc. Etc.
Posted by lovingattitude (Member # 17569) on :
Ive sent in my story to Dr. Oz and have tried getting family and friends to send their stories and struggles. I have also posted this on several lyme related websites...I hope this helps!
Posted by onmyway (Member # 17607) on :
i did send the petition that was signed by over 6200 people to him!! We will see!!!!!!
Posted by lyme4 (Member # 10723) on :
KAM,
Thanks for your help. I was able to finally post a comment.
Your so right with brain issue, its like we are friends and can help each other out.
Lyme4
Posted by kam (Member # 3410) on :
This is good lovingattitude
Lyme4..I think I read your post. I also think it is the first post I have read about the whole family being infected.
But, I know you are not alone with this. I know there are many others
Glad you were able to get the petition to Dr. OZ (Going back now to catch your pen name. Posted by kam (Member # 3410) on :
Only 110 now as of the closing of lyme street on Thursday, Dec 11th
Posted by Fordace (Member # 14874) on :
wrote mine in tonight......
Posted by kam (Member # 3410) on :
Read it Richard and responded. You are number 115.
Good luck to you.
Posted by HopefulinNY (Member # 15425) on :
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.)
Posted by kam (Member # 3410) on :
This is good. Thank you. I will copy and paste and fax it to my lyme doctor's as soon as I am able.
Posted by bettyg (Member # 6147) on :
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! Posted by kam (Member # 3410) on :
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.
Posted by kam (Member # 3410) on :
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.
Posted by kam (Member # 3410) on :
119
Posted by kam (Member # 3410) on :
121 posts on the Oprah board. I keep thinking it should be at least over a 1,000 by now. Slow going.
Posted by NJLyme82 (Member # 15683) on :
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.
Posted by kam (Member # 3410) on :
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.
Posted by kam (Member # 3410) on :
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.
Posted by AlisonP (Member # 7771) on :
Great idea Kam! I just posted a poem I wrote too. 130 is the current count.
Alison
Posted by AlisonP (Member # 7771) on :
Great idea Kam!
I posted a poem I wrote. Last count 132 I think.
Alison
Posted by kam (Member # 3410) on :
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 ]
Posted by bettyg (Member # 6147) on :
alison,
great poem!! would love to see your name with it so it doesn't lose WHO wrote it!!
Posted by kam (Member # 3410) on :
Only 133 people have responded. I sure hope Dr. Oz received more emails...
Posted by AlisonP (Member # 7771) on :
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
Posted by bettyg (Member # 6147) on :
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!
Posted by kam (Member # 3410) on :
Posted by bettyg (Member # 6147) on :
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!
IOWA BETTY....
Posted by AlisonP (Member # 7771) on :
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.
Or Pixie Dust Syndrome
Or Hobgoblinia
Or Plastic Pink Flamingo Phenomena
Sigh ... Posted by bettyg (Member # 6147) on :
allison,
1 setting; wow; your brain was really cooperating that day when you wrote this!!
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Doc Dave and Jay. Glad you were able to post too.![[Smile]](smile.gif)
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