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From Kris Newby of OpenEye UNDER OUR SKIN director, Andy, and Kathy Fowler were just interviewed on the Dr. Oz show on Oprah.com. If you feel so inclined, it'd be great if you could add a short comment to the online discussion. We're hoping that Oprah producers will take note of these comments and decide to feature Lyme on the Oprah television show. You can watch a 9 minute segment of the radio show here: http://www.oprah. com/article/ oprahandfriends/ moz/20081126_ oaf_moz You can add comments here: http://www.oprah. com/community/ thread/92112 And >From AlisonP Lymenet: ____________ ____________ ________ 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 If you're going through hell, keep going. ~Winston Churchill |
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