posted
Ms. Oprah Winfrey The Oprah Winfrey Show PO Box 909715 Chicago, IL 60690
29 March, 2006
Dear Oprah:
I have been following your show since it began. I have followed advice on and tips given, most with great success. (Especially your bra-fitting show--I went straight to My Intimacy on Madison Avenue and bought 2 bras! I was one of those with the very wrong size bra!!!)
What I want to talk about is something that no one talks enough about, and no one wants to talk about: Lyme Disease. Lyme is one of the fastest spreading infectious diseases in the USA, at times even beating AIDS. I remember when the AIDS epidemic started, no one did much--after all, it was just something gay men were getting (I lost over 50 friends and colleagues). The same is happening with Lyme Disease. People think, `` We don't have deer here, so we won't get bit by a deer tick''. The truth is that mice are the ones carrying the tick--the correct name is the black-legged tick--and mice are everywhere.
My cardiologist said to me a few months ago, ``they used to call Syphilis ``the great imitator, but that's what Lyme is doing now...'' Syphilis and Lyme Disease are the same type of bacteria--a spirochete. So many of us have been misdiagnosed--MS, ALS, Lupus, Alzheimer's, the list goes on and on. Then, if the patient is lucky, somehow, at some point, someone thinks (and it's usually the patient), ``It might be Lyme Disease'', and then the roller coaster starts. Try to get a doctor to do the right tests at the right lab, try to get a doctor to take you seriously, hope that your insurance company will pay for the treatment...
The reason that I am so surprised that you've never done a show (or at least if you have I never saw it) about this is that two of your favorite authors both have it--Amy Tan, and Alice Walker. They were both misdiagnosed like so many of us. Alice Walker's great book, The Same River Twice speaks of suffering with it while making the film of The Color Purple. Amy Tan was being told that she had ALS. I was being told that I had MS.
I was a working actor in New York City, back in 1986, when I started to get a myriad of seemingly unconnected symptoms.... vision problems, hearing ultra-sensitive...no memory--(I had to stop auditioning for on screen and stage work)...my hair started to fall out; I had incredible insomnia. I went to a therapist for compulsive eating because all of a sudden, I was gaining weight (85lbs in six months)--``I don't eat that much, I don't know why I'm gaining...!'' My therapist told me that a lot of the eating was ``unconscious''. It wasn't, it was Lyme Disease. My balance was suffering, I would get confused easily, get lost at times...the list is endless.
I am telling you my story in hopes that you will consider doing a show about this dread disease. A group of us from New York and New Jersey went to Boston last fall to support the people in Massachusetts that are fighting a battle (the same that we in New York were fighting until recently) to get proper treatment by doctors and trying to get insurance companies to pay for that treatment. Many of the folks from Massachusetts have to go to other states to get proper treatment. If you could have heard the families and children--CHILDREN--at the hearings in Boston, speaking about how their lives changed so that they didn't feel like kids anymore. They live in pain and confusion and loneliness. A lovely young mother that I met at my ophthalmologist's office (She's a specialist in Lyme Disease eye problems) didn't know that she had it and she gave birth to twin daughters, both with Lyme Disease. One just had heart surgery, due to the Lyme. She is just 2 years old.
This is such a dangerous disease that so little attention is being paid to. You have done so much good in the world, giving important information to so many. Please help get the word out about how dangerous this illness is and how many misdiagnoses are out there. In 1998, while I was still being told that I had MS (I refused to believe it, and I was right) a friend was having an operation in Huntington Hospital in Huntington, LI. Her sister was waiting for her in her room and noticed that the nurses looked really sad. She asked what was wrong and was told that two of the nurses that worked with them there had died; they were being treated for MS but what they had was Lyme Disease. (If your staff wants to check it out, this was in the Pediatric Ward, I don't, however, know the nurses names.)
In 1999, I my left eye went almost completely blind. Doctors were saying that it was MS and that I had to take steroids--they were calling me Friday and Saturday, trying to convince me to take the steroids. Oprah, I used to be a singer. One day working on Law & Order, another actor heard me talking with someone about health issues and he came to me and asked me if I was a singer...I told him that I used to sing, and how did he know, he replied, ``singers know their bodies''. I KNEW THAT I HAD LYME DISEASE--NOT MS!!! That night when I went to sleep, I prayed to all the saints that I pray to--and I asked them for a huge sign...''look, guys--if I've got MS, I've got it and I'll deal with it. But I don't think I have that, I think it's Lyme Disease.... HOWEVER, I am asking you to give me a big sign--(in other words, kick me in the butt) either way''.
Sunday morning, I woke up at my mom and dad's house, I shuffle to the kitchen to read the Sunday papers with them. My mom saw how down I was and said, `here, honey, read the paper.' The local newspaper at their home is Newsday. On Sundays, there used to be a reporter that I always enjoyed (Ed Lowe); so, with one good eye, I turn to his article and start crying and screaming. My mom was terrified--I pushed the paper at her and said ``read--read--oh my god!!!'' It was about a man that had the same situation as me (and so many others)--seemingly unconnected symptoms, tests coming out negative, etc, and it turned out to be Lyme Disease! My prayer was answered! I started my first IV treatment on the following Monday (Doxycicline--9 months of it!). I also have two co-infections: Bartonella (Also called cat scratch disease) and Babesia (similar to malaria). There are many other tick-borne illnesses, Erlichiosis for example...
The actor, Mary McDonnell has done a PSA about her brother-in-law that died from Lyme Disease--also misdiagnosed and un-diagnosed for years--but try as I did, I couldn't get it shown in the New York-New jersey-Connecticut tri-state area...it apparently is being shown around the country in some markets. Most of us with Lyme Disease are exhausted all the time, and can't get things done. I have been planning on writing this letter for 11/2 years---I am just starting a draft, who knows when I will actually get it done and get it sent off. My neighbor in NYC saw me in the elevator and asked me how I was doing...I said great, and then he told me about his friend that they took to the hospital that they thought he was dying and it turned out to be Lyme Disease. Senator Tom Harkin from South Dakota whose local congressman friend (Berkely Bedell, former South Dakota congressman, who I spoke to once, and I can get you his phone number) seemed that he was dying, and it turned out to be Lyme Disease. Endless stories.... endless.
I was doing a movie in Spain in 1997, and, not knowing that I had this disease, I was drinking some wine and smoking the occasional cigarette...You can't do either with Lyme Disease. A few weeks after I came back to NYC, my legs started to go numb...then the few years of drama started.
Oprah, if I seem to have rambled on and on, part of that may be the Lyme effects on my brain, and I tried to organize this letter for you as best as I could. If you will seriously consider a show--or a few of them on Lyme Disease, we will be eternally grateful. If you want to speak with someone from the Lyme Disease Association, I am including Pat Smith's name. She is at the Lyme Association address and phone below. Also, if you go to www.lymenet.com you will see more information on all of this. I have also included a few articles regarding the disease and people's experiences with it and getting diagnosed.
Ms. Pat Smith
Lyme Disease Association, Inc. PO Box 1438 Jackson, NJ 08527 888-366-6611 information line 732 938-7215 fax
Thank you so very much for reading this far, and I pray that you will see your way clear to doing a show on Lyme Disease.
Sincerely,
Cookie Rufino
(to the Lymenet folks, I enclosed copies of Washington Post article about Amy Tan's battle, The Ed Lowe article from Newsday--March, 1999 and a few more things about LD)
-------------------- Cucamonga Posts: 90 | From NYC, NY USA | Registered: Feb 2002
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
wow...all I can say is wow. I do hope your letter inspires Oprah to persue a show on lyme. It's a great letter.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
"Cookie", Very well put. Please send this letter to the other Talk show hosts (I just e-mailed Larry King this morning),you really hit in on the head. Don't give up, someone will listen, let's keep on e-mailing/writing. "Peace & patience", Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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posted
Cookie, OUTSTANDING job in being succinct in telling Oprah the issues we deal with. Loved how you worked your story of being a former actor/singer into your story as well.
3 corrections to your story for you to edit as well as on your word processor in case you use your example again like I do!:
Tom Harkin and Berkley Berdell are both from IOWA not S. Dakota. Berkley had to give up his job as a congressman due to lyme disease. (Tom was responsible for getting the DISABILITY bill passed to benefit so many of us handicapped.)
it's www.lymenet.org not .com; I used to do that all the time so don't feel bad ... too many choices to pick from!
Well, we know you WILL let us know if you hear back from Oprah's show staff.
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
great job!!!
i also saw the bra show. didn't go out and do anything about.
as they say, always start with something light to catch people's attention.
i wrote to larry king, too.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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It took me about 6 months to write, and then send and about 3 weeks to post on this site!!! (I was kinda asking permission,and since no one said anything, I posted it!!)
I kind of think that saying I used to be an actor/singer might put them off...I DON'T CARE ABOUT BEING ON HER SHOW!!! I just want her to do a SERIOUS show about it!!!
I sent a letter to Ed Bradley of 60 minutes about maybe doing a serious show...I SENT TWO LETTERS!! No reply...maybe I'll try again...Next, I want to send a copy of the letter to Dr Mehmet Oz (Columbia-Presbyterian)...maybe he'll approach Oprah (they seem close) esp due to the Chronic LD center (hopefully) opening soon in his hospital...I WILL CONTACT THE ENTIRE PLANET!!!
Again, thank you everyone for the good thoughts and good words and LET'S BEAT THIS RIDICULOUS ILLNESS!!!
Love, Cookie
(P.S. I didn't tell Oprah my favorite joke: I had every symptom except for one, guess which one? TESTICULAR PAIN!!! I'm a she!)
-------------------- Cucamonga Posts: 90 | From NYC, NY USA | Registered: Feb 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
My hat is OFF! Splendid job. Thank you for your outstanding effort!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Cucamonga...I love that joke about the testicular pain...I recall reading that way back.
When I saw the post that you had written to Oprah, I never stopped to read it because I figured, "what's the point, she's not going to do a show on this".
Oprah said herself on her anniversary DVD that she gets millions of letters begging her to do shows that highlight various topics and causes.
HOWEVER.....I read your letter and it's well thought, grabs my attention, and is full of emotion. It breaks my heart to read how you were a successful actor and singer.
My daughter has Bartonella and is an aspiring actor (not what you are thinking...but a true working actor like yourself). She was violated by her theater teacher at the time she started coming down ill. That threw her into a spiral and had to quit school and be homeschooled the rest of her high school life. She graduates next week and the hope of her life as an actor is becoming weaker.
She, too, gained 80 pounds in six months and the docs thought that was NORMAL!!!!
It is obvious from your letter that you are not doing this for personal gain, but to represent the entire Lyme community. I commend you on that and wish you well and that we will see you doing your craft again.
posted
Cookie, how about editing your topic line and adding OPRAH'S name; someone else just posted about this, and there would be no way for her to do a search on TOPIC TITLE the way you have it shown ok.
Just use the pencil: my letter to Oprah; no response to date for example. Thanks Cookie.
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posted
THanks, everyone...AND, the truth is, that acting is a wonderful profession, but--as with everythigng, the POLITICS are maddening...
Betty--HOW DO i EDIT THE LINE???
I realized that I hadn't put Oprah's name in that line and I didn't know how to do it!! CAN YOU TELL ME HOW TO DO IT???
Thanks, Cookie
-------------------- Cucamonga Posts: 90 | From NYC, NY USA | Registered: Feb 2002
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Cookie, I think if you go to your first post in the thread and click on the pencil and paper icon at the top rightish...
That will give you an edit screen. I believe you can get to your title there, as well, since it's the beginning post.
I hope that helps, and even moreso, I hope I remembered and described it right.
You wrote a fantastic letter!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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bettyg
Unregistered
posted
Cookie, I see Trueblue helped you out with her excellent step by step instructions.
Yes, that's how it's done.
Also, if you end with 2 or 3 duplicate postings, do the same thing, but chose the box that says you can DELETE the ENTIRE post, and it will not show up on the menu board any more.
Read the FAQ, frequently asked questions, taking 10+ minutes; it has wonderful hints and TIME-savers to us folks.
posted
Okay, guys! I edited the title(or whatever it's called) and, I THINK I changed the .coms to .orgs...(thanks, Betty!)
I hope more folks will contact Oprah and others... What about my idea of trying Dr Oz--the cardiologist at Columbia-Presbyterian?? Maybe he could convince her to do something!!(He's obviously a pal of Oprah's)
Thanks, all!!
Love, Cookie
-------------------- Cucamonga Posts: 90 | From NYC, NY USA | Registered: Feb 2002
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