Oprah.com Community: Oprah, Dr. Oz and Lyme disease film ...

petervt

1. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 24, 2009 1:25 PM |

In response to: onthemarcm

I just posted in this forum at a thread titled: "Dr. Oz and Lyme Disease GET HIM TO DISCUSS IT ON OPRAH " http://www.oprah.com/community/thread/3641

This film "Under our Skin" is very powerful and has the production value to be a respected and watched vehicle to hammer the message home that "Change" needs to happen in the diagnosis and treatment for Lyme disease and Late stage/Chronic Lyme.

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lakes592

2. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 24, 2009 10:08 PM |

In response to: petervt

I second that Peter! This movie explains it all while people are suffering and dying due to red tape and nonsense! We are suffering and having to be our own advocates at the same time, shame on them.

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cureunknow

3. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 24, 2009 10:46 PM |

In response to: lakes592

Oprah and Dr. Oz Please hear our plea for help. You are blessed with being a voic efor the people. I never thought in a million years I would be having to deal with Lyme Disease and worse not getting the treatment that I needed to work towards remission since their is no cure.

One camping trip in July 2007 with my daughter and my life has been turned upside down and forever changed. I went to the Dr. right away not knowing anything about Lyme or ticks for that matter. He said you don't have lyme no rash. Then as I'm getting worse by the hour I get sent to ear specialist and I told her how I went camping and was so sick within 6 hours. My head burning, my ear felt like it was going to blow out and my neck was so stiff I couldn't look up or down.

I am one of lucky ones that got a positive test and I tought ok now lets treat this thing, but only to be taken from one dr to the next. By the time a year later rolled around. I can bearly speak,walk,talk, and my hands where shaking and my heart was racing, and I was having stabing pain throughout my body and my brain wouldn't stop burning.

I am greaful to the lyme specialist that goes againist the grain and has saturated me in more meds then you can possibly imagine to get me to rise from the dead. I'm still in treatment but I feel hopeful to the future of getting a piece of my life back.

Please answer our prays in givng us a voice and having the Movie UnderOur Skin talked about on your show so many people are suffereing and don't know they have lyme because most regular dr do not realize the seriousness of this disease and how to treat it. They want to rely on tests that are 50% wrong and dismiss the patient if they test negative for lyme.

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barbmaine

4. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 24, 2009 10:47 PM |

In response to: onthemarcm

Members of Congress received copies of Under Our Skin and Pam Weintraub's book, Cure Unknown last fall. Much more needs to be done to increase awareness, fund research and educate citizens about Lyme and associated diseases. Having Dr Oz interview Under Our Skin producer Andy Abrahams Wilson on Oprah along with a frank discussion of the treatment protocols, two standards of care, chronic Lyme vs post Lyme would certainly focus attention on Lyme - the most common vector borne disease in the United States.

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rnmcvicker

5. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 25, 2009 6:07 AM |

In response to: onthemarcm

We who have lyme's or know someone who has this disease are beginning to see the long term results of lyme's disease. The research is showing connections to disorders of the brain and nervous system. Who knows just how many have been misdiagnosed with having dementia, mental disorders and been incorrectly medicated? We may discover that many disorders both acute and chronic are the result of a tick bite and infection. I am one of the few that has Multiple Sclerosis and then discovered(due to my insistance on having the CDC non-approved Western Blot)) that I had lymes. I hoped it was not MS, but many of my symptoms persist in the manner of MS. I hope others who have been misdiagnosed will persist with finding a Lyme literate MD who will be willing to do the testing and treatment regardless of CDC. It is the patient that should take priority. Whether it is this film or we in the lyme community, change must take place to allow doctors to do their job. Insurance denied me the IV therapy when I was able to work, I have given up on seeking to fight for the one thing we all have the right to. Quality of life regardless, of red tape or politics.

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jasminesea

6. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 25, 2009 6:07 AM |

In response to: onthemarcm

Dr. Oz,

Hello. Please do a show on Lyme Disease. I am late diagnosed after 5 years. Please help to get the word out.

Thank you.

Jasmine

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poemhunter

7. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 25, 2009 6:07 AM |

In response to: onthemarcm

Dr. Oz and Oprah,

I and thousands of other patients ask that you do a show on UNDER OUR SKIN and the controversy of chronic Lyme.

Before I got this disease, and another tick illness Babesea, I led a very active life. Now, I can only work part-time, due to chronic pain and a plethora of other health problems. The most astonishing part of this illness was the disdain that I am treated with by most of the medical community. As a scientist myself, it is shocking to see all the research that clearly indicates Lyme is an on-going infection, but which is ignored by most of the medical community. I know many otherwise very fine doctors, who understanding of the disease is exceedingly poor.

The movie is an excellent education tool, and I think a show concerning the film would greatly benefit those with Lyme, and those who may one day have it. Given that the CDC estimates approximately 200,000 new cases of Lyme a year (and increasing) in the US, I think your show will be meaningful to a wide audience.

Thank you for your consideration

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pearlblue2

8. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 25, 2009 6:07 AM |

In response to: onthemarcm

UNDER OUR SKIN is indeed a huge gift for the Lyme community. In my experience, everyone who sees it, GETS IT. Here are my thoughts:

1) We can each be advocates for the film.

All Lyme sufferers need to spread the word about this film in whatever way we can. I bought the DVD of the film and have been showing or loaning it to whoever I can think of. Friends, relatives - I mailed it to them with a list of names and asked them to mail it on to the next person after they watched it. If I have to, I beg people to see it - as in - this is what happened to me and I don't want it to happen to you or someone you love -- you have to see this film. Once they see it, they GET it, they talk about it. Word of mouth has amazing power. Now my pharmacist has the DVD, and my IV nurse is next in line. Maybe their seeing it will help others get diagnosed. Every little bit helps.

2) We really need someone like Dr Oz and Oprah to help bring this story to the larger public - to the tipping point.

Dr. Oz & Oprah,if you're reading this, all I can tell you is, Under Our Skin is MY story. I greatly relate to the woman who is on the U2 tour. In her words - "the invisibly ill, the walking dead". Lyme disease sent me from being a vibrant, high-functioning, happy young woman to the point where I asked God to give me cancer and kill me already. You just cannot know what Lyme disease does to you unless you're living it. After 2 years on antibiotics and still going, I feel like the park ranger in the film - I am getting my life and my former self back and I am grateful to be here. "Its like magic." Maybe I will never fully get back to who I used to be - but imagine how many others can be saved from the same fate if you will bring the film, my story, our story, to the public.

Thank you everybody for your efforts for public awareness for Lyme.

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iowabetty

9. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 25, 2009 6:07 AM |

In response to: barbmaine

Dr. Oz and Oprah,

Please do a show of UNDER OUR SKIN, the new LYME DISEASE documentary by Andy A. Wilson, and the lyme controversy: ILADS, Intl. Lyme-Associated Disease Society, our lyme literate mds, LLMDS vs. bad guys, IDSA, Infectious Disease Society of America !!

It's time to get this out from underneath the rugs! TIME TO SPRING CLEAN!

{font:'Arial','sans-serif'}{size:14pt}Dr. Oz, so glad you/family watched UNDER OUR SKIN lyme
documentary! Now you have a good inkling
what we go thru!

{font:'Arial','sans-serif'}

I've had CHRONIC LYME 38.5 years; 34 yrs. MISDIAGNOSED by
40-50 drs/specs!

Out of 150
symptoms, mine total 100!! So many wasted years going to dr. after dr.
and BELIEVING THEM! uffda; bad news!

When I thought I had early Alzheimer's like my late
sis-in-law, Cheryl, who died at age 40 of this;
I heard about the western blot igm and igg blood test and to send to
IGENEX, CALIF. They are 1 of top 5 in
US. Both came back POSITIVE!

I was on 20 months of long-term pulsed antibiotics; then 6 months of 22 supplements, which made
me worse. I had complete body blood
labs, etc. and learned I had many more things wrong with me too:

sleep apnea,
gluten/dairy food intolerances,
HHV-6, EBV, simplex herpes, on/on!
Was diagnosed with diabetes 2 right before correct lyme dx! The list goes on and on!

It took me 5 years of hell to get SSDI, disability
benefits since lyme/fibro/cfs/PAIN are invisible and they don't believe us.

My husband of 34 years on Oct. 5 has NEVER known me
healthy! He married me for RICHER OR
POORER, BETTER OR WORSE, IN SICKNESS AND
HEALTH, ETC.

I'm one of the FEW lucky
ones whose spouse has stayed with me instead of divorcing them.

Many of us lose our jobs, health insurance, marriages,
kids are taken away, homes, and
BANKRUPTCY due to the high costs of treating lyme disease/co-infections!

The ULTIMATE .. commiting SUICIDE giving up due to excessive pain/depression!

WE PAY OUT OF POCKET since our health
insurance cos. REFUSE to pay any expenses like they do for cancer/HIV !!

OPRAH NEEDS TO DO A SERIES OF 3 TV SHOWS ABOUT THIS since
it's not simple; magnified with
ILADS/lyme literate mds vs.
IDSA/infectious bad drs. who don't believe in chronic lyme and treat for 3
wks/under causing CHRONIC LYME PATIENTS!! Thank you!

BettyG, Iowa lyme activist

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pismokam

10. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 25, 2009 6:07 AM |

In response to: onthemarcm

Do you have ideas about how to help this movie lead to necessary changes in the way Lyme disease is diagnosed and treated?

In regards to your question. 1. it would help if the media would show parts of this film such as the edited one for congress that was shown at the luncheon. And have representatives for ILDAS, LDA, Turn the Corner, Pam with Cure Unknown and others add in their 2 cents worth.

The problem is that many of us are too sick to advocate, go on walks to raise awareness,, etc. so we need those that are able to represent us.

I came down sick in Oct 2001. Too sick to work or do household chores. Too sick to follow through on contacting Under Our Skin when it was in the beginning stages of filming. I was finally dx in 2003 and started treatment. It is 3 am. I woke at 2 am. Not unusual for me. I most likely will not be able to do much today. Today is my birthday. But, it is just another day for me. I have written Oprah many times and am trying again...hoping that she and her staff will shed some light on the subject.

I do not know what the answers are. But, I do believe the answers are out there. It would be interesting to see what the general public's reaction is to Under Our Skin. I have shown it to one friend who said she would be very sceptical of the film if she had not had first hand experience due to having me as a friend with lyme. She was with me when I went to a major medical center to ask them to show me how to give myself bicillin shots and work with my lyme doc to help me get well.

The infectious disease doctor refused and said all he could give me was sympathy which is in the dictionary. I brought along documenation and information about lyme disease. He was not interested. He said he had a stack of papers on his desk that would say the oppostie of what I had. This doctor trained other doctors from UCLA MEdical Center. He was the doctor provided by insurance.

I stopped counitng at 35 specialist looking for answers and help. I know we are not a lone. I had labels such as MG, MS, Al's thrown at me. I joined the different groups while ruling out or confirming this conditions. Many of people in these groups suffered for yeears before finally getting a dx and starting treatment.

it seems when it comes to things attacking the inside of the body the medical field has a lot to learn. With lyme disease, we need the funding that other have for research such as the cancer survivor's, MD, etc. But, we are still at the pioneering stages.

OK I am going to try and see if I can get back to sleep now and hopefully wake up with hope in a few hours. Living with this is like walking up a steep hill with a heavy backpack on each day. PUtting it down at night to rest does not usually meet the need. Starting the day in a few hours again usually starts off with the pains and lack of stamina and strength from the 8 years before.

In the beginning, I would have a day once and awhile without lyme. But, I have not had one of those days in a long time. perhaps moments now and then. I wonder what it would be lke to go to the spa that Oprah and Gayle go to in AZ. Do they have room for power chairs? What would I actually be able to do there if I were able to afford to be there and get there.

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amilev

11. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 25, 2009 6:07 AM |

In response to: onthemarcm

Please do a show to raise awareness and help shed light on the serious issue of Lyme Disease. It is not being properly treated by doctors, and thousands are becoming severely debilitated and needlessly suffering.

People are not being diagnosed early enough, correctly, or treated long enough to get better.

The disease is horrific but to be left to suffer is barbaric.

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mike59sc

12. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 25, 2009 6:37 AM |

In response to: barbmaine

Dr. Oz,

My name is Michael and I'm from Springfield Massachusetts.

Despite the prevalence, severity, and economic
costs of Lyme Disease and associated iinfections (Ticks spread a variety of things), patients with Lyme disease are having increased
difficulty obtaining diagnosis and treatment due to the monopoly which the IDSA
holds over the treatment of Lyme Disease and other tick-born illness.

The ISDA was investigated
specifically for this reason by Connecticut Attorney General Blumenthal, given
the scientific literature does not support their one sided point of view. In creating their guidelines, they intentionally excluded dissenting points of view and any relevant research that conflicted with their agenda. Some of the
ISDA guidelines panel physicians have
conflicts of interests with other medical societies, physicians, vaccine and patents and insurance
companies whom they consult for . Insurance companies depend on and utilize these guidelines to justify denying payment for medical care which patients often can't pay for themselves. These patients often pay or paid enormous premiumus until they fell ill, only to be told "No" when they needed help the most. If this sounds like a similar theme from John Q the movie, it is. Follow the money trail. The IDSA guidelines panel is corrupt, and patients and their families have been abandoned in some way or another as a consequence.

Under Our Skin is a comprehensive look into the world of this complicated -- often distorted -- mess of Chronic Lyme Disease, -- the politics, illness, the patients, and the physical and legal consequences. It's important that you speak for those who no longer have a voice. This documentary is our window now into the mainstream, where the complexity can be seen on screen in a digestible comprehensive format. Unnecessary deaths, alienation, suffering and misunderstanding should not continue to be our plight if only the truth were exposed. The public deserves better than their doctor telling them "Oh don't worry about that tick bite, as long as no bullseye rash appears, you're fine." It's not that simple.

Sincerely,

Michael

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lavinsue

13. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 25, 2009 6:50 AM |

In response to: petervt

This disease needs to be brought forward. With the new stimulus bill limiting what doctors can do for a disease it is more imparities that a discussion be heard.

When my son went to the hospital the er thought he had mrsa. He was given an antibiotic vacomyacin intravenously. sent him home and we had to return 12 hours later. He had a golf ball size lump on his upper thigh in the back. They also lanced it and took a culture. That came back negative. He also had 2 lyme test that came back negative then he finally had one that came back positive. He was in the hopital for 4 days. The docs really weren't sure what he had for 2 to 3 days.

My 17 yo was diagnosed last June. Since then he has headaches, dizziness always tired and irritable not sure if the last is due to the disease. Most people think that I am crazy thinking it is link to the lyme.

His primary care wants to do a mono test.

We also went to SUNY in NY and that doctor was questioning the treatment my son got.

There is so much that doctors do not know about this disease. And the Health Care system doesn't care

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sickasadog

14. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 25, 2009 6:50 AM |

In response to: onthemarcm

Please do a show that actually will reveal the true nature of this disease by having quest on the show that have Lyme disease. Especially those people that were 100% healthy, hada tick bite with a bulls eye rash, had positive tests according to the CDC and were treated according to the IDSA guidlines and are still sick. Also please include those folks that had a tick bite, got a bulls eye rash and never had a positive test to show the tests are not accurate. We need to show that this disease can be 100% disabling, the tests are not anything close to perfect and that IDSA guidelines only work for some people.

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karen0209

15. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 25, 2009 6:57 AM |

In response to: onthemarcm

Being sick with Lyme disease is bad. Dealing with the political blockade is unbearably awful. The film Under Our Skin reveals the situation in a truthful light. Please consider a show about this film.

I also highly recommend Pamela Weintraub's book: Cure Unknown. This is the book you have to read if you really want to know what's going on.

Karen in Providence, RI

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Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN

Posted on Feb 22, 2009 1:02 PM

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