posted
I am listening to the Dr. Oz interview right now and I'm going to attempt to take (hopefully coherent) notes to share here. Just bear in mind it's 4 AM here (my only chance ot listen to the show) so I'm a liiiiiittle spacey.
Dr. Oz said that his mother in law is the one who told him that he had to watch Under our Skin. He also got a copy of it from medical reporter Kathy Fowler who said he had to see it. So he watched it. Before he was done, his whole family was in the room ..."captivated by it".
Andy Abrahams is on. Also introduces Kathy.
Kathy says at first in her reporting she covered Lyme disease as everyone did, e.g. as easy to treat. She has Lyme disease. Had the bullseye rash. Sounds like one dose of abx. 10 years later she developed a bunch of sxs.
People were telling her she had to do the *real* story about Lyme disease. She started investigating it for both profesisonal and personal reasons not knowing she had it but curious.
Andy Abrahams: Dr. Oz asked why he did a docu about Lyme. Andy said he didn't take it seriously at first, but his twin sister had Lyme disease and he remembers her lying on the couch, so thought it was just a "kvetcher's" disease.
But then 8-10 years later in California a friend of his got very sick. First dxd with MS, then ALS. But finally got dxd with Lyme. So he was wowed by the reality of Lyme he discovered and once he looked into it more and more he was shocked at the misunderstandings about the disease.
Dr. Oz says he called ID docs and friends of his who were Lyme experts after watching the docu. He got back generally the belief that they don't think that chronic Lyme exists. He was surprised. But they said they didn't know for sure. One doc said that he thinks there are many other viruses that causes people to get sick and Lyme might be a part of it.
Kathy says she got so many calls from doctors telling her to stay away from the story. That really prompted her to ask more questions. Most shocking thing she discovered is that a lot of people in med and sci community were very closed minded. Had doctors tell her it doesn't exist.
She talks about how horriffic the tests are after being asked about accurate they are. Miss 50 percent
q: Can you get more specific tests?
Andy says that a lot of specialists use Igenix. But most docs won't order from there. He says even results from Igenex may not be accurate.
KF says that there are many strains of Lyme that don't show up on tests.
AA says this is a stigmatized disease. Commends Kathy for talking about her Lyme disease. He knows of celebrities who did not want to talk about it and come out with their illness. Compares it to the early days of AIDS.
Mentions a Dr who treats both AIDS and Lyme patients and says that this Dr says that his Lyme patients are more debilitated than his AIDS patients.
Dr. Oz asks why KF is willing to talk about Lyme since it's stigmatized. She says it came to the point ... references the movie and Dana who says "loot at me, how do I look?" friend says she looks great and she says you have NO idea.... she describes immense pain ... but then she started slurring words on air, neuro problems, so it affected her ability to do her job but trying to keep it secret.
One day she is typing and her hands freeze up and she can't type. Couldn't talk and had to be on the air in an hour.
Said she told bosses she thought she may have Lyme so she was going to be very careful on reporting it so as not to be biased. Says she got complaints from both sides of the Lyme issue so she figured she was doing ok.
Dr Oz gives stats - 20,000 reported cases, CDC estimates 200,000 may be underestimate. Oz says we may be seeing Lyme because we're invading spaces where deer and ticks live. Hmmm.
Dr. Oz asks Andy to walk through the disease and filming about it.
A talks about discovering so many people who were sick ... in allegiance to them he made the film.
Dr Oz mentions the political factions that are moving against people with Lyme (but without taking a stance on either side of the argument).
AA mentiones many of the other dxs people were getting and that so many of them were told that it was all in their head.
q: how expensive are txs?
KF: can range to hunudreds of thousands of dollars.
AA didn't make film about tx for Lyme disease. More about controversy about acute vs chronic Lyme.
q: how long is long term abx?
AA: months to years. Can be tens of thousands of dollars over months for tx.
OZ: Lyme disease to him is a lot like Syphilis. Which makes it much more difficult to treat. As a physician you look at the movie, see Jones and Jemsek, charging a lot of money to treat people which Oz is not critical of, but treating people without clinical backing (Ed note: ARRRRRGH) but yet having much anecdotal success with many people getting better.
Oz questions about spending a lot of money on abx therapy that might be really helpful for some people, but not so for others, and poses the question, how much is it worth to save a life? According to him, looking at it objectively, the cost is about $100,000.
(Ed note: I think he's waffling on the whole Lyme controversy, but to be generous, I will say that it appears he is trying to be objective. He's definitely not picking a side, though seems to be leaning a little bit to the chronic side).
q: Why wouldn't one set up a clinical trial to set up the efficacy of long term tx?
Oz says the odds are stacked. But you need a dx. Also hard with people who have a constellation of sxs.
Fibromyalgia is mentioned. Oz says it can be caused by a lot of things including Lyme or viruses.
Oz says you can't prove that people have chronic Lyme so you can't do trials on them. AA says scientists need to have a disease clearly defined in order to do clinical trials. But since Lyne has so many sxs, this is the root of the problem.
Oz asks AA what he would do if he was Dr Jones or Jemsek. AA says he would do what they are doing -- fighting for their livelihoods and for their patients. (Yay Andy!) Mentions Dr Jones is only pediatrician txing Lyme in kids. Working with kids and getting results. Says they're trying to bring him down.
Talks about medical board review and trumped up charges. KF menitons the political nature of the disease. 5 stuudies done on long term abx, but the different camps interpret results differently.
KF interviewed IDSA predident, says she asked him if they needed to do more research on Lyme, and he said no, they have everything they need to know. This raised her suspicion. She says that we can't even decide whether or not green tea is good for us or not and are still studing that, why wouldn't we continue to study Lyme? LOL
KF mentions Lyme is a *clinical* dx according to the CDC. (Yay again!)
Oz says you come out of the film not thinking these guys (Jones and Jemsek) are quacks. He says they may not be right (grrrrr), but they seem honest.
Oz asks how medical review boards filter information -- how they could see people who had gotten better from Lyme and how that affects their decision process.
AA says there is a general assumption that Lyme is overdiagnosed ... malingering ... strong bias.
Oz says it's true that docs think that Lyme is over dxd because they think it's something else. Says there was no immunology course in med school when he was there.
AA: issue of antibiotics is a big one. IDSA is very invested in regulating abx. But we're talking about people's lives.
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).
Oz asks AA about connection between Lyme and Alzheimers. AA says YES there is a connection he believes. Mentions part of UOS about 7/10 brains of Alz having Lyme.
Oz asks if you can get Lyme without being bitten by a tick.
KF says yes people think you can pass it in utero and sexually.
Oz mentions about people with Lyme being txd and having healthy babies and ones with Lyme who did not tx and babies died. Oz asked AA if that was true and they had tested postive. AA said yes and talked a bit more about it.
Oz asks about # of people with chronic Lyme. AA says anywhere from 10 to 100 times from what is reported.
Oz - if AA had chronic lyme what would he do? AA would go to a LLMD he says. Oz asks if he would do abx for this if he had it. AA says not sure long term abx alone is the cure. Also would use alternative medicine.
End of interview
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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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posted
Thanks a lot for posting this. Is there a url for posting those comments Dr. Oz asked for?
Posts: 8430 | From Not available | Registered: Oct 2000
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-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
Here's more news telling us to write on the message board.....
Fill up Dr. Oz's message board with encouragement and comments about HIS RADIO SHOW. We need to do both email and comments on his message board. All this makes a difference when it comes to getting on other shows... like Oprah. If you have emailed him already.... please email him again after the show and put a message on this message board. Spread the word!!!
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!
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Great Job Ali,
Geeeess, your brain fog must be lifting big time. How on earth did you remember all that?
Maybe it's the Humaworm eh? Anyway have a great Thanksgiving,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
You guys give me WAYYYYYY too much credit LOLOL I can't even remember where my own house is sometimes let alone a whole show!
I actually sat at my computer and typed the notes *as* I was listening. You should have seen the train wreck that the post was before I went back and made corrections:
droz ly7me sys aa bad startrs cdc
.... you get the gist ....
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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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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Great job never the less Alison. I added to Dr. Oz's email bag. Hopefully others will as well.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Yes, thanks so much Alison. I really appreciate knowing what he said. I wish he would view all the DVDs of ILADS seminars.
I think he's stuck in thinking one drug will cure everyone. Combination, rotation and co-infections don't make for good clinical trials.
I hope Dr. Oz finally allows the fact that there is chronic Lyme diseaseinto his psyche.
It seems strange to me that after viewing the movie he still has doubts. You would think being a colleague of Oprah's he would have access to talking to Amy Tan about her experience and Oprah's other friend who had chronic lyme disease.
Hopefully one of these days instead of doing shows on Oprah about cracked heels and other beauty secrets Dr. Oz would do a meaningful show on Lyme disease and finally get off the fence about if it could be chronic or just a bunch of whiny sickos complaining with viruses of some sort.
I am grateful Oz did this radio show and hopefully he will get of fthe fence and do more.
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
Anyone else have trouble writing to dr. Oz? It's so frustrating...I wrote a whole long message TWICE and was almost ready to send it and I would get an error report and lose the whole message. I hope it's just my computor and that it isn't happening to others.
Posts: 1176 | Registered: Oct 2002
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posted
Well, think how people are accepting something. They search for more information from OTHER sources. One source, no matter how good, is not going to convince anybody. But he is now on a lookout.
Posts: 54 | From Canada | Registered: Feb 2007
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posted
I left a message on Oprah's website, I think we all need to do what we can......
Although......In my humble opinion, this disease has more than just financial reasons for denial from insurance companies......We are dealing with Biological Warfare and I dont care who you get to look into this, the "powers that be" will not let the truth come out......
Yes we all deserve quality of care, but I just dont think we are going to get the help we need......The "head in the sand" reactions we are getting from the higher-ups tells me that its not ignorance, but instead a cover up......
Biological Warfare is the future for combat among nations......Its an effective way to conquer a nation without destroying the infrastructure....Unfortunately, if there is a cure, it will not be given to the "guinea pigs".......It will be only for the wealthy and connected.......We live in scary times for sure.......
On a more uplifting note......we cant give up on getting a better quality of life....even if some of us will never be 100 percent again.....I wish the best for everyone.......
Posts: 27 | From Illinois | Registered: Oct 2008
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
I agree with King Neptune. Biowarfare may be playng a role here and that this may be why we run into so many roadblocks. I also know that the media will only go so far. For example despite Al Gore's movie, I still think the global warming issue is up for debate. I thought that Under Our Skin was a great movie and we showed it ourselves in CT... but I was disappointed when they presented two things. Here they are....
It was stated in the movie that ecological change is definitely responsible for the increase in the spread of tick habitat and also that people moving into the woods is what has started the epidemic and is causing it to spread. There is no proof of these statements and these statements may unintentionally be moving people's attention away from one of the possible real causes.
This was not just something stated by Under Our Skin.....it has become accepted as fact.I have lived in the woods since I was a child and we did NOT have deer ticks at that time...so there was no place for them to spread out FROM.
I have researched a bit into weather warfare and the genetic manipulation of ticks AND the organsims they carry. Science knows how to engineer these organisms to withstand harsher climatic regions that they would not normally be able to tolerate. They have also made Bb resistant to certain antibiotics (supposedly for helpful reasons in the lab)
We have the technology to help create superstorms, tetonic weapons to create earthquakes and tidal waves. We can warm certain sections of the planet with this high tech technology.
I have observed the media concerning the global warming issue which includes increased violent weather and the spread of disease and disease vectors. Nowhere do they even mention the possibility of biowarfare(genetic engineering)or of weather warfare. It's ALWAYS blamed on global warming. There is an agenda here people and we need to question their premises and conclusions.
Raising legitmate questions is not being a conspiracy theorist...it is being a responsible concerned citizen. If people label you a conspiracy theorist, this is a tactic of controlled opposition and you need to be wary of those who toss around these types of negatively charged terms.
Having said that I still feel it is very important to write Dr. Oz and encourage Oprah to air a show on Lyme. Even if the whole truth doesn't come out right away, we will get millions more people questioning what the heck is really going on
Posts: 1176 | Registered: Oct 2002
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bettyg
Unregistered
posted
i sent feedback to 2 links shown elsewhere or maybe they are above! i didn't start at top since i'd read it earlier....
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I have left many comments in the last month about Dr. Oz taking the time and interest in watching the movie and learning more about the isease.
I have also added my story and the story and deaths of others many times.
For the first time I was able to sent an e-mail directly to Oprah and Dr. Oz. Maybe y'all already have done this and know about it but just in case this is the link that I used that finally went through:
dhttps://www.oprah.com/plugform.jsp?plugId=220
Posts: 351 | From Georgia | Registered: Feb 2008
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posted
I spent an hour composing my post on the Oprah site, only to have it rejected because it was over the 2000 character limit. My guess is that would be approximately 400 words + or -
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Bless your heart, I'm sorry. Don't you hate it when that happens!!!!!! Yeah, me too!!
Did you try again? Just curious how many was able to get am e-mail to her and Dr. Oz!?
I'm praying as I know all of you are too that she and Dr. Oz will do a very in depth show with LLMD's, patients and even with families that have so sadly lost their loved ones to the nightmare of diseases!!!!
posted
I also sent e-mails to both Oprah and Dr. Oz...one a day for 4 days...each time i told a story about the life my husband has been living these last 7 or more years...or just haw hard it is to find a Lyme Dr... or to get the proper testing done...ect...if we keep it up who knows our wish may come true....
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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Rocephin / Zithromax / Supps Posts: 107 | From Plainview, New York | Registered: Sep 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i'm giving up on her.
she's probably buddies with the drug and insurance companies-all the rich guys against all of us
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I sent one to her and Dr. Oz. Sure hope they
do something to give this horrific illness some
exposure and help.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Here is what I wrote to Dr. Oz.
Dr. Oz, You asked patients with Lyme disease to report to you so here I am.
I was infected at age 9, I'm now age 30. I saw over 150 doctors and received 15 diagnoses. Eventually I tested positive in 2008. The doctors claimed "Well one positive test out of 10 doesn't mean anything, you don't have Lyme disease."
You can't win. If you're negative, you don't have Lyme. They make no mention of false negatives, but if you're positive, it's a false positive. How is that rational? It's like a witch hunt. They toss the suspected witch in the water. If the person drowns they were innocent, if they swim, they're guilty and burned at the stake.
The politics is unreasonable, our doctors are being persecuted, and we've got 200 Lyme Specialists worldwide treating a population of millions. Remember the CDC criteria are only for the United States. This disease is worldwide across the world's temperate regions. The controversy is the same globally, not just here. It's denied everywhere.
My girlfriend contracted the disease in Italy. She tested positive. She receives minimal treatment. They denied her further treatment. She fly's to the United States to receive treatment.
Then you have the IDSA producing guidelines that exclude dissenting opinions and are investigated only to find a variety of conflict of interest? Our lives are surreal, like some conspiracy theory from hell. We need serious help, for the public to know what is going on, we need media attention and people without conflicts of interest studying and creating appropriate guidelines that are flexible in respect to the nature of a disease that is not fully understood.
They claim that no more research is necessary, yet they themselves claim "Post Lyme Syndrome" exists, and they don't know why? How can the IDSA president who himself said that, say more research isn't needed? This is insanity, this isn't science.
Sincerely, M.P.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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I can't even remember where my own house is sometimes let alone a whole show!
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