Here are some great clips from the Oscar-Nominated Documentary film on Chronic Lyme Disease called “Under Our Skin” (available for free on Netflix, Hulu, and for small fee on iTunes.)
Clip #1: Patients Abandoned: Under Our Skin - Excerpt 1 - Patients Abandoned - YouTube
BCB,
While I haven’t seen the entire video, why should anyone view this as the gospel? It’s very easy for a group of Lyme proponents to make an emotive video like this. How evidence-based is it really? We see a girl agonising on a bed with pain and really have no idea what her history is. I really can’t figure out why people are so swayed by this stuff. To me it’s like watching a video where someone is telling us aliens are responsible for crop circles. It’s anecdote and does not make a solid case for Lyme disease producing all of their problems as it wouldn’t for any other disease.
a lot of info you have provided has been useful but watching a film to get info and advice is not a good idea. Its got a splash of hollywood to it!!
ShouJust like you wouldnt watch philadelphia to get you info on HIV. 
— Begin quote from “scott”
BCB,
While I haven’t seen the entire video, why should anyone view this as the gospel? It’s very easy for a group of Lyme proponents to make an emotive video like this. How evidence-based is it really? We see a girl agonising on a bed with pain and really have no idea what her history is. I really can’t figure out why people are so swayed by this stuff. To me it’s like watching a video where someone is telling us aliens are responsible for crop circles. It’s anecdote and does not make a solid case for Lyme disease as it wouldn’t for any other disease.
— End quote
Scott…why are you a naysayer? This film is critically acclaimed and they have interviews with head doctors, researchers, and US Senators on the issue of Chronic Lyme Disease. They even interview some of the mainstream opponents of Chronic Lyme such as Dr. Wormser and Shapiro. The girl agonizing in bed is one of the patients followed in the film. She does 2 years of IV antibiotics and is now well.
If it were up to the mainstream who beleive Chronic Lyme doesn’t exist, then she would have gotten 28 days of antibiotics and told “Sorry, you must me making it up. You should be cured by now.” In my opinion, it is just wrong.
I’m sorry, but it seems like every step of they way you bring out some article from the IDSA that says what I the battle I have personally gone through (and have nearly won) is a lie, or was in my head.
Lyme patients are passionate about the truth of the disease because we have lived it. I’m not hyping up some sort of conspiracy theory. I was ill for more than 6 months with dizziness as my primary (but not only) symptom. I went to almost a dozen different doctors and got a whole host of different diagnosi which were all wrong. I was told by more than 1 doctor that it was in my head and I should seek counciling and go on prozac.
They were all wrong. I am nearly 100% back to my old self. Symptoms have resovled. I’ve SEEN PROOF that the treatment works. You can see it in my before and after brain scans.
Bottom line. I am skeptical as hell about this stuff. I’ve seen it before in many forms and I know people who have been run through the Lyme mill, been given a ton of antibiotics by scam doctors and it is was all for naught.
There is an element of zealotry to this and I don’t buy the extreme stuff dished out especially in films like this. It smacks of the same sort of madness you see with people who are convinced vaccines cause autism. Search YouTube for that and you will find similar films.
It’s not being a naysayer, it’s about being realistic and not gullible and weighing up the evidence.
I’m not saying you don’t or never had Lyme disease. I have no idea about your case apart from what you tell us. You are well, that is great but it doesn’t change my view on the topic. And does it matter? People who are convinced they have Lyme disease will go down that road anyway – some of them who do not have it will unfortunately be drawn in by ripoff doctors and find out the hard way. It happens. You guys never acknowledge this.
But you see, that is the difference.
You assume the doctors are trying to rip people off. There are always a few bad apples everywhere, but I can tell you that LLMD’s are some of the most compassionate doctors I have ever met.
The discussion about Lyme disease is very similar to the vaccine / Autism debate. The “Government Experts” and “Medical Establishment” say there is no scientific link…but you should go talk to some of the families whose children were normal, happy kids going into the doctors office and then became very different children getting after the vaccine. These parent’s aren’t making this stuff up. Do I think vaccines cause autism? Not necessarily…but do I think it is part of what can trigger it…absolutely. The problem with Lyme and Autism is they are looking for a single cause, when in all likelihood it is a variety of causes all overlapping. A child has chemical / food sensitivities and is not able to detox properly, they get loaded up with heavy metals and toxins. The vaccine pushes them over the edge. Dr. Deitrich Klinghardt in Seattle has helped a lot of Autism cases which his protocols of detox, heavy metal, chelation, and treating the kids for parasites, microbes (including Lyme, Babesia, and Bartonella), and mold. Incidentally, Dr. Klingardt believes 70% of autism cases in the usa are cased from congentigal lyme disease (babies who got it from their mothers in utero without the mother knowing.) Lyme is the primary instigator that “gums up the works” causing the doxicity.
It’s also the same discussion regarding GMO foods. The government follows Monstato’s lead and says the food is fine. Yet it has been banned in many countries and they had to sneak in legislation protecting Monstanto et al from lawsuits should people get sick from the GMO.
So…when you experience this stuff first hand, as I have, you don’t really trust the CDC, FDA, and other agencies view on certain topics very much. We still use BPA in products in the USA whereas most countries have outlawed it. Why is that??
It’s the same argument as Lyme. Published data says X and Patients experience Y.
Before getting Lyme I wasn’t a color outside the lines type of guy. If the CDC said something I took it as gospel. not anymore. To me, being gullible is believing the CDC and the garbage that Dr Wormser and team publish on lyme. They are wrong on this and many other issues. People are very sick, and there is hope with proper recognition.
I think there are 2 extreme views here. I agree the film is pretty emotive and dramatic, I think things like suggesting Lyme is sexually transmitted etc is a step too far, jesus if it was the whole bloody world would have it and be ill. However, in my opinion it’s pretty foolish to discount real patient experiences and class them in the same category as fictional films/aliens!! You only have to consider the history of medicine to see that the medical communtiy makes huge mistakes/assumptions about emerging illness, look at HIV. I’m personally keeping an open mind…
Let’s not forget the MS was called “Fakers Disease” by doctors until the advent of MRI when everyone then said “Oh…you were right.”
Absense of proof is not proof of absense.
Excatly…also obviously a documentary is going to pick the worst cases to make a point. It is annoying that the film does’t cover testing and diagnosis though. It focuses alot on the political side, obviously government and insurance companies have a huge motive for covering Lyme up. There isn’t the same money in antibiotics anymore as most are out of patent, so big multinational pharmas don’t have the motivation to research Lyme…u bet ur ass if a new, patented antibiotic emerged that exclusively treated Lyme the research would change focus pretty quickly!!
I also wanted to add that I do believe LLMD’s believe lyme is chronic, just as I believe some docs think they can cure autism with chelation therapy. I don’t think their heart is in the wrong place in wanting to help us. I guess why so many are struggling with accepting lyme and autism caused by chelation therapy is that so much of the proof is on a case by case basis. The mind is very powerful and maybe some of these people who got better just needed hope? I know I do and that’s why despite my doc’s lack of support, I am holding on to hope for a possible lyme treatment. Just knowing we have this possibility to pursue if we choose is very powerful.
— Begin quote from “bcb1200”
Absense of proof is not proof of absense.
— End quote
One of the oldest logical fallacies in the book: the argument from ignorance. The fallacy describes an argument that bases a positive claim on the absence of evidence, or what is not known.
I have to ask BCB, whne you see a blob of light in the sky, do you conclude from the inability to identify the light that it is an alien spacecraft?
I think if we take this example Scott…bcb is not saying the light IS an alien spacecraft but he’s saying it can’t be proven that it ISN’T…I think that’s my whole argument…I am open minded about Lyme…I’m not in one extreme nor the other…there’s research against it for sure but rather than take that as gospel id rather consider it in the context of who wrote it, their funding and bias, the political landscape etc and also consider real patient stories and be open to the possibility of the traditional medical view and emerging evidence both playing a part in increasing knowledge…either side of this argument could be proven wrong. I don’t think enough is known about Lyme.
Hi DL – my point is no reasonable person would suddenly conclude there was a spaceship up there simply because there was no evidence to prove otherwise. With this logic I could tell BCB there was a flying tea pot orbiting Saturn and he’d have to believe it in the absence of evidence to prove otherwise. It’s very poor logic.
In terms of “chronic Lyme disease” (not the late stage version we discussed previously that your doc is treating you for) let me remind people that the following organisations do not support this notion. These are not just American-centric organisations but worldwide organisations that base their recommendations on the current overall scientific evidence:
– the Infectious Diseases Society of America
– the Centers for Disease Control
– the National Institute of Allergy and Infectious Diseases (run by the National Institutes of Health)
– the American Academy of Neurology
– the European Federation of Neurological Societies
– the European Union of Concerted Action on Lyme Borreliosis
– the Canadian Public Health Network
– the German Society for Hygiene and Microbiology
– NSW Health, Australia
All of these medical societies share the same recommendations which specifically recommend against the long term use of antibiotics for supposed chronic Lyme disease.
Check out this video from the IDSA on the long term antibiotic use problem:
Here is a question my boyfriend asked. Since we have lots of people that say they are cured of lyme, are there people that have tried long term antibiotics, did not get better, and are suing the LLMD that treated them. He asked why they are still allowed to practice medicine if they are doing more harm than good?
Rocker – yes it has happened and doctors have been struck off because of it.
Yeah I was wondering this too…I would be keen to see cases brought by a patient instead of a mecial board as obvs in the USA the motivation to squash chronic lyme muddies the water. The only cases I have read about concern medical review boards bringing cases against doctors for long term antibiotic prescription…I haven’t read of cases brought by patients but I am sure there must be some…where have u read about it Scott??
Also…I wouldn’t say there is NO evidence for the existence of chronic lyme…and equate it to a teapot orbiting Saturn LOL. There are research papers (even one of the papers u posted speaks about chronic lyme as a legitimate condition), practising doctors, organisations, government petitions, a multitude of patient stories, Dr S agrees it exists etc…I know we might disagree but saying it is as abstarct as that is not fair…there is evidence for and against…I sit somewhere in the middle, I get the skepticism, I understand your concerns about Igenex (they do seem to give out a hell of a lot of positives!!), but I don’t think there is nothing to support persisting Lyme. Also, as you know, I think the distinction between chronic, late and persistant Lyme infection gets muddled in alot of the papers I have read.
if chronic lyme truly exists as a disease why is it not treated in the same was as other diseases e.g. HIV / Cancer etc etc…
From what I understand, and please correct me if im wrong, but the story is that people believe the health organizations do not want to diagnose people with this condition because it costs so much to treat?
Well if that were the case surely no one would be treated for cancer or HIV also as these are extremely costly treatment methods?
Can someones please explain the big conspiracy?
Seems to me it would be in the interest of “big pharma” to support chronic lyme disease so that they could cash in on the expensive drugs. They could pay off all of those doctors. Interesting when it doesn’t work that way the activists find another angle. With cancer it’s all about the evil doctors making money from chemotherapy and all sorts of other nonsense. Why doesn’t that thinking apply to Lyme?
IMO because the antibiotics used for Lyme are all out of patent and there’s no money in it. Chemo costs a bomb. I agree with what you’re saying Richy, I don’t know why Lyme is so politicised but it is…insurance companies in the states don’t want to fund years of antibiotics for patients so they discredit tests and fund research to deny the existence of chronic Lyme…look at the published papers…I have never seen such long declarations of conflict of interest.