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Low Dose Naltrexone – Bogus or Cutting Edge Science?

On SBM we have documented the many and various ways that science is abused in the pursuit of health (or making money from those who are pursuing health). One such method is to take a new, but reasonable, scientific hypothesis and run with it, long past the current state of the evidence. We see this with the many bogus stem cell therapy clinics that are popping up in parts of the world with lax regulation.

This type of medical pseudoscience is particularly challenging to deal with, because there is a scientific paper trail that seems to support many of the claims of proponents. The claims themselves may have significant plausibility, and parts of the claims may in fact be true. Efforts to educate the public about such treatments are frustrated by the mainstream media’s lazy tendency to discuss every study as if it were the definitive last word on a topic, and to site individual experts as if they represent the consensus of scientific opinion.

Recent claims made for low dose naltrexone (LDN) fit nicely into this model – a medical intervention with interesting research, but in a preliminary phase that does not justify clinical use. And yet proponents talk about it as if it is a medical revolution.

Background on Naltrexone

Naltrexone is an FDA approved drug that binds to and inhibits opiate receptors – whose primary known function is to bind endogenous opiates (endorphins and enkephalins) and reduce pain. These are the same receptors that morphine, heroine, and other opiate drugs bind to. The primary use of naltrexone is to rapidly reverse opiate toxicity, or in the chronic treatment of opiate addiction.

But biology is always more complex than our initial understanding of any system. Evolution has a tendency to use what is at hand, and so receptors and hormones have been frequently co-opted for other uses over evolutionary history. This is partly why medications often have side effects – the target of the drug is used for more than just the desired effect.

There is also evidence that opiate receptors exist on other cell types, including cells involved in immune function, and activating or inhibiting these receptors may therefore modulate immune function or other biological functions. So far so good – all interesting and fairly standard basic science.

Translational Research

In the case of LDN the major problem comes at the level of translational research – taking what we are learning from basic science and applying it to specific clinical applications. It should be noted that this type of research is very unpredictable. Most of the promising leads provided by basic science do not lead to effective treatments. There are many possible reasons for such failure to translate to clinical outcomes. It is possible that the basic science picture is still significantly incomplete, and the piece or pieces that are missing alter the ultimate clinical effect of the intervention. It is also possible that the basic science is simply wrong in one or more of its conclusions. Further, the basic science may be correct, and the predicted outcome legitimate, but the size of the effect clinically insignificant, and therefore not seen in clinical trials.

Or, the basic science may be looking at markers that are associated with the biological or disease process they are interested in, but are not causally related (just downstream effects), and therefore manipulating the markers has no effect. Or the markers may be very nonspecific and completely incidental. For example, many things will activate the immune system incidentally, resulting in elevated markers for immune activity. But modifying these markers, or even immune activity may do nothing for the underlying disease or process you want to treat.

There are therefore many blind alleys. The basic science should therefore be used cautiously, to point in the direction of potential translational research – but not to justify clinical treatments.

Translational and other clinical research then proceeds to preliminary pilot studies. These types of studies are generally small and either open (not blinded) or with some blinding. They are not large, rigorous, and reliable clinical trials. The purpose of pilot studies is to see if a new treatment or approach is basically safe, and if it has any potential. You want to make sure that patients do not do clearly worse on the treatment. The point of preliminary research is to justify larger clinical trials – not to support clinical claims.

I have discussed previously the work of John Ioannidis that indicates that most published research is wrong. Don’t take this the wrong way – on scientific questions the research eventually works itself out. But when you take any question that has been fairly definitively answers, and then look back through the literature, many if not most of the preliminary studies published on the question turn out to have been wrong in retrospect. The take home lesson for this is that, when you are at the pilot study stage most positive studies will not pan out when more rigorous studies are done.

This should not be surprising. There are multiple factors that are known to bias small or poorly controlled studies toward the positive – placebo effects, experimenter bias, and publication bias just being the most obvious.

If you read the conclusions to even very positive pilot studies you will find, “This study indicates that treatment X is well-tolerated by patients with disease Y,” or “This study indicates that larger clinical studies are warranted.” When researchers have to couch their conclusions in terms that will get past peer-review, that is all they can say. Problems arise, however, when proponents (whether or not they are the researchers) begin to make clinical claims that go beyond such caution.

Low-Dose Naltrexone

So what is the current state of the science of LDN? At this point the basic science shows that opiate receptors, as I indicated, do more than modulate pain. This means they are a potential target for the development of new drugs, or new applications of existing drugs. While naltrexone is an antagonist – it inhibits opiate receptors – LDN causes a compensatory upregulation of native endorphins and enkephalins, which last beyond the effects of the naltrexone itself. This means, paradoxically, that a daily dose of LDN can be used to chronically increase endorphin and enkephalin levels.

This is all perfectly reasonable, but still a bit preliminary, basic science. It indicates the potential for translational research – nothing more.

What about the clinical evidence? A search of PubMed for “low-dose naltrexone” reveals only pilot and preliminary studies. The quick bottom line is that there does not appear to be a single medical application of LDN (outside of addiction) that is supported by a class I clinical trial, let alone a consensus of rigorous studies. What we do see is a smattering of pilot studies for a few diseases.

One study on fibromyaligia found symptomatic relief and reduced pain and tenderness. Beyond being preliminary, such effects could simply be due to increased endorphins (natural pain reducers), without having to invoke any other mechanism.There are also a few studies looking at Crohn’s disease and experimental allergic encephalitis (EAE – a rat model of multiple sclerosis) with some  positive effects. The EAE study adds the further element of extrapolating from an animal model to a human disease.

There is also a pilot study of LDN in autism. While one outcome measure was positive, the rest were negative – which to me is a negative study.  At the very least, LDN looks less promising for autism than for either painful or autoimmune diseases, which does make sense given that autism is a very different and complex disorder.

So far this would all be just an obscure corner of medical research, hardly worth the public’s attention and of use only to medical researchers looking for promising leads to follow up. But here is where the pseudoscience comes in – some advocates are promoting LDN as a breakthrough medical treatment for a long list of diseases and disorder, going well beyond the research.

The website, lowdosenaltrexone.org, embellishes the preliminary research and presents LDN as an effective treatment. They list that it is effective for:

Cancers:

* Bladder Cancer
* Breast Cancer
* Carcinoid
* Colon & Rectal Cancer
* Glioblastoma
* Liver Cancer
* Lung Cancer (Non-Small Cell)
* Lymphocytic Leukemia (chronic)
* Lymphoma (Hodgkin’s and Non-Hodgkin’s)
* Malignant Melanoma
* Multiple Myeloma
* Neuroblastoma
* Ovarian Cancer
* Pancreatic Cancer
* Prostate Cancer (untreated)
* Renal Cell Carcinoma
* Throat Cancer
* Uterine Cancer

Other Diseases:

* ALS (Lou Gehrig’s Disease)
* Alzheimer’s Disease
* Ankylosing Spondylitis
* Autism Spectrum Disorders
* Behcet’s Disease
* Celiac Disease
* Chronic Fatigue Syndrome
* CREST syndrome
* Crohn’s Disease
* Emphysema (COPD)
* Endometriosis
* Fibromyalgia
* HIV/AIDS
* Irritable Bowel Syndrome (IBS)
* Multiple Sclerosis (MS)
* Parkinson’s Disease
* Pemphigoid
* Primary Lateral Sclerosis (PLS)
* Psoriasis
* Rheumatoid Arthritis
* Sarcoidosis
* Scleroderma
* Stiff Person Syndrome (SPS)
* Systemic Lupus (SLE)
* Transverse Myelitis
* Ulcerative Colitis
* Wegener’s Granulomatosis

Right there we have a huge red flag – a treatment that works for a long list of diseases with different etiologies. Many of the diseases on the list are auto-immune, and therefore an immunosuppresant could theoretically be applied to many auto-immune diseases. But many of the diseases on the list are not auto-immune.

Treating a long list of cancers is another red flag, as well as HIV/AIDS. The justification for this is that LDS “boosts the immune system,” this phrase alone also being another indication of a dubious treatment. Scientists do not talk of “boosting” the immune system because this concept is too vague to be of any use. The immune system in healthy individuals is probably already operating within optimal parameters, especially since immune activity is a trade off between fighting off invaders while not causing too much damage to the host. Increasing immune activity, therefore, does not always equal improving immune function. In individuals who have a weakened immune system because of chronic disease, poor nutrition, or toxicity their immune systems can be restored to more normal function with treatment – but these are often specific treatments that address an underlying cause.

Further, there is an inherent contradiction in simultaneously treating diseases that are auto-immune (the immune system attacking the host), and immunodeficiency diseases (like AIDS) and claiming to treat cancer by “boosting” immune activity. Increasing immune activity actually worsens auto-immune diseases, and suppressing the immune system would worsen AIDS. This is a difficult contradiction to resolve.

The end result is just another bogus treatment with claims that are literally too good to be true, based upon pre-clinical or preliminary evidence only. Proponents have turned into proselytizers – saying on their website:”

If you or someone you know has connections in the media, the medical community, or to those in developing countries involved in AIDS policy or treatment, please let them know about LDN.

Truly promising and science-based treatments do not need an organization to promote them. The science will speak for itself.

Conclusion

The opiate system and drugs to manipulate it are standard biomedicine, and we may see an expansion of the indications for naltrexone as the clinical research progresses. I would also not be surprised at all if this line of research does not pan out – we simply cannot tell at this stage.

Meanwhile, the LDN community are turning a promising if preliminary treatment into essentially what is snake oil by promoting it for an implausibly long and contradictory list of indications. They are making the classic mistake of extrapolating prematurely from preliminary evidence, and relying heavily on anecdotes. Anecdotes are just another form of preliminary evidence (a particularly weak form at that)  that should only be used to indicate promising new research, but not as a basis for clinical claims.

Ironically, LDN promoters may in fact harm research into LDN by giving it a bad name. Researchers may be reluctant to hitch their careers, or funding agencies commit resources, to a treatment that has a dubious reputation. If the research is promising it will still get done, but if anything it is likely to be slowed by the efforts of the LDN promoters.

This is just one of the many ways in which pseudoscience poisons the system.

Posted in: Science and Medicine

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180 thoughts on “Low Dose Naltrexone – Bogus or Cutting Edge Science?

  1. Recovering Cam User says:

    I agree with the majority of what’s written here – I think the hype around LDN is not deserved based on current evidence. But I want to address two points you make above.

    First, the contradiction between LDN’s supposed ability to assist with conditions that benefit both from immune stimulation as well as those auto-immune conditions that wouldn’t benefit from stimulation of that kind. In The Promise of Low Dose Naltrexone Therapy,

    http://www.amazon.com/Promise-Low-Dose-Naltrexone-Therapy/dp/0786437154/ref=sr_1_1?ie=UTF8&s=books&qid=1273068480&sr=1-1

    the authors discuss the theory that LDN dampens overstimulation of the branch of the immune system responsible for auto-immune activity while simultaneously increasing the functioning of the viral fighting branch by balancing the Th1-Th2 system. If true, this could explain that contradiction.

    Second, LDN is available as an off-patent generic, rendering further investigation by pharmaceutical companies not cost-effective. I suspect a large part of the desperate hype surrounding LDN has to do with the fact that many early pilot studies, especially with regards to MS, have been promising enough that further research does seem warranted, yet our current system leaves little incentive for anyone to invest the enormous sums of money required to definitively answer the questions raised about it.

    As a CFIDS patient with documented low natural killer cell function, I made the choice to do a trial of LDN based on one of those pilot studies that showed an increase in NKC function from LDN. I have not yet been on it long enough to see if it has increased my own NKC function, but it has unquestionably improved my mood, a valuable benefit when dealing with a currently incurable debilitating disease.

    I would certainly have preferred to have rigorous studies to back up that decision, but I question your belief that science will ever come given the lack of economic incentive involved. Given the minimal risk of side effects and the cheap price, it seems a not unreasonable experiment for patients who have exhausted other options.

  2. RCU – the NIH has an annual budget of 30.5 billion dollars. That is a lot of resources to follow up on promising research that is off patent. The MS Society also funds MS research – and there are funding organizations for many specific diseases. Also, academic researchers typically will build a research infrastructure and then use that to do investigator initiated research for things that cannot get independently funded. They also form consortia among institutions to do such research, usually with a disease focus.

    So pharmaceutical research is not the only research out there.

    There are always young researchers looking for a promising but neglected area to research. LDN would be perfect if the evidence warranted. What I suspect is that there are negative studies which did not get published but convinced some researchers it was not worth their time. Or – more research is being done, it just hasn’t been published yet.

  3. The Eventual Doc says:

    “Second, LDN is available as an off-patent generic, rendering further investigation by pharmaceutical companies not cost-effective. I suspect a large part of the desperate hype surrounding LDN has to do with the fact that many early pilot studies, especially with regards to MS, have been promising enough that further research does seem warranted, yet our current system leaves little incentive for anyone to invest the enormous sums of money required to definitively answer the questions raised about it. ”

    Even though naltrexone is generic, a pharmaceutical company could obtain three-year market exclusivity were they to successfully file an NDA for the new application & dose.

    So it’s not as if there is NO incentive. It’s just not all that much.

  4. Scott says:

    In The Promise of Low Dose Naltrexone Therapy, the authors discuss the theory that LDN dampens overstimulation of the branch of the immune system responsible for auto-immune activity while simultaneously increasing the functioning of the viral fighting branch by balancing the Th1-Th2 system. If true, this could explain that contradiction.

    I’d be a lot more inclined to place credence in this if the citation were to journal articles, not a book. The book really gives the impression of being fundamentally advertising, rather than good science. This bit from the Amazon description bothers me in particular:

    It also lists fillers and compounding pharmacies, doctors who prescribe LDN, and patient resources, and includes interviews with LDN patients and researchers.

    And reading the reviews certainly makes it sound like the authors go FAR beyond the science. Notable bits that really freaked me out:

    “LDN therapy has also been proven beneficial for cancers by helping to reduce tumor size”

    “The dose of Naltrexone used in LDN therapy is similar to the doses that are used in homeopathic medicines.”

    “I started taking Low Dose Naltrexone in early 2009 for my Hepatitis C and within months had tremendous results.”

    “Such texts are greatly needed on the new near-costless, harmless treatments and cures. LDN balances the immune system, whether hyper or hypo. If you suffer from MS, cancer (or a candidate), AIDS, etc. please consider this $1.00 a day miracle.”

  5. qetzal says:

    [O]ur current system leaves little incentive for anyone to invest the enormous sums of money required to definitively answer the questions raised about [LDN].

    I disagree with this as well. There may be little incentive for phama to pursue this, but there’s plenty of potential incentive for NIH-sponsored research, if the data warrants it. Any academic researcher who proved significant clinical benefit using LDN in any of those serious conditions would be well rewarded with prestige, more grant money, etc. It could easily be a career-maker for someone.

    Also, the cost would be significantly less enormous than developing a new drug, since naltrexone is already available (and cheap), and there’d be no need for more animal tox or other expensive preclinical studies.

    If there were good preliminary data for LDN in any of the significant cancers, it wouldn’t be particularly hard for the right researcher to get NIH funding for at least a Phase I/II study. If that showed sufficient promise, NIH might easily fund larger Phase II and ultimately Phase III studies. The latter would certainly face a higher hurdle, but there are academic groups that are well-equipped to do such studies (e.g. ECOG).

  6. Warthaug says:

    the authors discuss the theory that LDN dampens overstimulation of the branch of the immune system responsible for auto-immune activity while simultaneously increasing the functioning of the viral fighting branch by balancing the Th1-Th2 system

    This is, in a word, bullshit.

    The vast majority of autoimmune disorders are Th1-driven diseases. As are immune responses against viruses. Th2 immune responses are directed against organisms such as helminths (i.e. large, extracellular pathogens), as well as immune responses requiring large quantities of antibodies (once again, almost always against extracellular pathogens), and are the cause of some immune disorders such as allergies.

    Ergo, any compound that suppresses Th1 responses (even if it drives the balance towards Th2) will suppress both autoimmune disorders AND anti-viral immunity.

  7. Recovering Cam User says:

    I referenced the book, rather than an individual paper, because it’s an attempt to collect in one place all the published research that has been done on LDN.

    Each chapter is summary of that research, with the appendix containing a detailed list of the clinical trials that have been conducted and an extensive list of published papers on LDN and related research. Much of the book is highly, highly technical and way over my layman’s head; it also says nothing about homeopathy and does not draw the conclusions you are presuming from the comments made by supporters.

    In addition, the authors end their introduction by stating,

    “Hardly a magic bullet, LDN is reported to halt disease progression in a number of different conditions, and in some cases has improved symptoms remarkably. However, LDN doesn’t offer benefits in all patients who try it. And while side effects appear to be rare and mild when used appropriately, clinical trials are necessary to evaluate potential adverse effects and determine the true efficacy and safety of LDN in specific conditions.”

    As a layperson, I’m unqualified to determine if the research cited is sufficient to warrant further clinical trials. And there is no question the cited comments supporting the book are not warranted based on the evidence. But I suggest you not evaluate a book you haven’t seen on the basis of those comments.

    Regarding other funding sources for research, I stand corrected in my assumptions.

  8. bwmbagus says:

    I use LDN for SPMS so I decided on the basis that it is safe to try it. The results have been very good, but all thge time I am concerned that the science needs to be proven.
    I have also read a lot of the science of cytokines and MS and it also seems the the effects of met-5-enkephalin on cancer is very encouraging.
    So for autoimmune diseases and cancer, the logic of the biochemistry is certainly reasonable to me and I am no longer the slave of very dangerous immune suppressant drugs.
    Some think “if it showed such promise NIH would be falling over themselves”.
    Well they are not so the penny simply hasn’t dropped yet. Endorphins are still a new subject in terms of immune regulation and I am not suprised by this, especially when a seemingly unpromising therapy has very little profit in it too.
    But one other thing sways this argument. We, the people with the diseases in the first place, are using LDN, asre benefitting in our opinions and we demand that this science is explored, especially when our choices save the health systems hundreds of millions a year! AND – we have to pay for this stuff too!!
    Luckily – or unluckily – it is very low cost and low profit.
    But, regardless of everything else said here – we want this rersearch done and done properly, because we believe LDN does help us and we ntherefore need to know for sure.
    If we the patients came to an academic with a lorry load of money, they would do this rsearch for us and there is no argument in that.
    Well, we are saving someone a fortune already, so lets get them to fund this research and now.

  9. delaneypa says:

    The FDA has approved VIVITROL (380mg of naltrexone, once monthly) for alcohol dependence. Modestly popular among psychiatrists in my neck of the woods. I am not familiar with the research, but seems effective for the few patients I have on it. At about $1000 a month, not for everyone. I don’t know if 380mg/month equates to “low-dose”.

  10. Scott says:

    I referenced the book, rather than an individual paper, because it’s an attempt to collect in one place all the published research that has been done on LDN.

    If you’re not prepared to provide meaningful citations, I suggest you don’t provide any at all. Or indeed, don’t make the claim if you can’t properly support it.

    Much of the book is highly, highly technical and way over my layman’s head; it also says nothing about homeopathy and does not draw the conclusions you are presuming from the comments made by supporters.

    But I suggest you not evaluate a book you haven’t seen on the basis of those comments.

    I notice that you completely disregarded my core complaint regarding the official description. And to explain a bit further, I based my evaluation on that description. Then I looked at the reviews to see if there was anything there that suggested I was incorrect in that evaluation; there was not. I quoted the reviews simply because they were so flagrantly stupid.

  11. Recovering Cam User says:

    Scott,

    If I understand your core complaint, it’s that you thought the book was advertising rather than good science. I did not disregard that; my reply points out that the vast majority of the book is a discussion of the science that has been done thus far, with technical explanations, citations and references.

    The book does call for more research to be done on LDN; the authors wrote the book because they think the preliminary studies warrant this additional research.

    If your complaint is that 11 of the book’s 212 pages contain information for patients interested in trying LDN, you are certainly entitled to your concern. As someone who as actually read the book, however, I think it does an admirable job of attempting to reign in some of the irrational enthusiasm about LDN while simultaneously addressing the fact that people are already trying it anyway.

  12. bestthief says:

    Not to forget that the NIH gave Dr Smith, Professor of Medicine Penn State $500,000.00 to continue her study on LDN and Crohn’s disease.

    Also the number of people across the world that claim benefits from LDN should not be overlooked.

    Re: delaneypa remarks that 380 MG naltrexone will cost $1000.00 is nonsense. I can buy if for under $20.00

    Re: The Eventual Doc said “that Even though naltrexone is generic, a pharmaceutical company could obtain three-year market exclusivity were they to successfully file an NDA for the new application & dose.” I will still be able to buy it on line from overseas.

  13. weing says:

    “Re: delaneypa remarks that 380 MG naltrexone will cost $1000.00 is nonsense. I can buy if for under $20.00″

    Where? This is a suspension for IM injection once a month. In other words, show me.

  14. bwmbagus says:

    weing, 380mg would last me 85 days at 4.5mg a day.
    Also, i use powdered naltrexone in a rapid release filler so much cheaper than an IM prep.
    Lucky I aint alcoholic then.

  15. Jayne Crocker says:

    Something isn’t adding up about this ‘report’. You’re right that pharmaceutical companies aren’t the only ones who can fund trials for LDN ie charities, but luckily I live in the UK where patients can push for trials/further research and one that will be done on a large scale trial which is very much needed.

    First, the systems that provide for research are unable to respond. The commercial sector needs profit which does not exist for LDN. The government NIHR etc requires applications from existing researchers or the pharmaceutical industry. These have been lacking for 30 years, so we can assume this source is cold too.

    So the systems for research are configured to fail to recognise a drug like LDN with no patent, no profit and a new medical paradigm for treating so many diseases.

    Second, because of the money involved and the need to change the systems to respond to pressure from patients who demand the research, we need the politicians to pass edicts that change things and make sure that a drug like LDN, with such large patient support, can get the research without competing for a ‘slot’ simply because the patients can choose for research to be commissioned. We as LDN users are saving over 100 million pounds a year in the NHS in the UK, and the same in other countries. This means that the money does not need to be taken from the pot for other research but can be accounted for in savings already being realised.

    However, only politicians can make these changes by recognising the savings already in existence and order the use of these savings to fund research. Existing research systems have no provision for allowing patients to order research. This is why LDN has never been accepted for research and is opposed for off label prescription. It is nothing to do with the science of LDN, it is all about a system not fit for purpose and about the need for change.

    Such a change carries the challenge of opposition from interested bodies who would see this sort of patient power as a threat to drug industry profits and investments in drug technology in terms of money and career choices by doctors. But it is the health choices of the patients that really matters, and currently, the pharmaceutical industry is not responding to the wishes of the market and needs putting into line.
    If that is not the job of politicians then we need to elect different people. The whole point of politicians is to deal with social issues like these and the fact that out of patent, orphaned or generic drugs are ignored in favour of expensive and often risky side effect laden mainstream drugs, is a problem overdue for legislation.

    It is the opinion of us patients who are knowledgeable people about their conditions that no one has the right to tell us we cannot choose for ourselves. In practice, that is the system we have ‘grown like topsy’, and we are paying the price in lives, obscene amounts of money, and in fear that if we upset the pharmaceuticals, they won’t serve us. It is time to end this tyranny for good.

  16. Rogue Medic says:

    There are 189 studies listed at clinicaltrials.gov. From recruiting to completed.

    My search was for naltrexone, not just low dose naltrexone, but does include studies on low dose naltrexone. Clearly, this generic drug is something that nobody wants to study.

    If the claim that nobody wants to study naltrexone is bogus, why should any other claim be treated as anything other than bogus?

    It is too expensive to study a generic drug, such as naltrexone, but there is no shortage of research on naltrexone.

    The main point Dr. Novella seems to make is that there are claims being made that are not supported by good research. We should just wait to see what the results of further research show.

    Naltrexone has been around for a long time and has been shown to be pretty safe. The same can be said for sugar pills. That is not a good reason to believe that either is efficacious.

  17. beachtiepurist says:

    Someone in our Yahoo group mentioned this article. The following was reply:

    “Dr. Novella is probably best known for debunking pseudoscience. This ranges from people who believe in UFOs, ESP, to alternative medicine.

    From his SGU podcasts I’ve heard, I agree with most of what he says when it comes to pseudoscience. From his point of view, he sees LDN as having very little scientific backing for what many of these pro-LDN sites are claiming, and he’s right. In fact, alot of people who are pro-LDN spend alot of their energy saying there needs to be more research, because they’ve tried it and think it might be something that really works.

    I’m not sure how Dr. Novella personally feels about people having the right to try out medication on their own without their doctor’s approval, but at the very least, as a doctor, he’d be against giving a patient LDN based upon the lack of supporting evidence thus far.

    I think this is why many people who are looking for doctors to prescribe LDN are having a tough time. It isn’t because your doctor doesn’t care, or is completely close-minded, but from their point of view, you’re coming up to them claiming this will help you, but with no evidence to back up your claim. I’ve looked through pubmed, there isn’t much there at all.

    However from the point of view of someone with a chronic illness without insurance, seeing people post before and after LDN data, showing improved health markers, I have no qualms about having tried this stuff out on my own. This is part of my own tactical approach to tackling what feels like an impossible situation.

    Now that I feel much better with LDN, less symptoms, more energy, I definitely am someone who wants to see more research in LDN. Yet at the same time, I have no illusions about being cured (sure, I dream for it, but don’t expect it). With the few test cases that Joyce has gathered from this group, LDN has helped us and not an insignificant amount. Joyce’s daughter seroconverted. Ask all the HCV guys who have dropped enzyme levels, and dropped viral loads by multiple orders of magnitude when SOC failed them, if they think that LDN is nothing but a placebo or snake oil.

    Let’s keep in mind, Joyce’s daughter is the first person on LDN that I know of, and she’s been on it for only 3 years now, starting LDN just 1 month before she was supposed to enter the baraclude trial. In that month, LDN dropped her viral load, so she no longer qualified for the trial, and then it eventually seroconverted her. We don’t know what it’s going to do in the long run, but I’m not someone who feels like I have the time to wait for 5 years trials. I do have my fingers crossed for Replicor but I’ve seen the previously planned research on Alinia (another drug that’s been around and people on medhelp have seroconverted both antigens using it) never get off the ground, supposedly also due to lack of financial funding and/or compensation, according to Romark Laboratories.

    Beach”

  18. bwmbagus says:

    The point about internet promotion and hype is very important.
    LDN is not a cure for anything, at best, it is a therapy that restores adequate endorphin levels – which deplete with age – and consequently does much for well being and immune and repair system management and modulation.
    It is well known that chronic diseases based on cytokine imbalances are behind most of these conditions and the endorphins seem to rebalance these chronic cytokine imbalances.
    So, LDN helps us live. If that is not enough for our problems, then we need more, but users seem to think that in many cases it is enough.
    Quality of Life seems to be a major indication of LDN use, so we need a 1000 person study measuring such things over a year or so.
    But please, no more hype, let’s just share our insights and realise that the arguments for trying LDN are not strongly scientific, except that LDN is safe, the endorphin rebound is proven, many of the endorphin effects are proven and you must find out for yourself about this.
    But, there is not a known risk in trying LDN at under 4.5mg, once a day.
    This means people are using it, and this means the research becomes imperative as far as I am concerned.

  19. Rogue Medic says:

    bwmbagus,

    you must find out for yourself about this.

    No.

    Using that reasoning, there is nothing that I would learn from research. Everything would need to be learned by first hand anecdote.

    That is the methodology of a species that will become extinct.

    But, there is not a known risk in trying LDN at under 4.5mg, once a day.

    There are many things that I might do, just because there is not a known risk. The reality is that everything has risks. Even placebos have risks. The sub-prime mortgages were supposed to have such a low risk that it was not worth considering.

    All things have risks. Low risk is not the same as no risk. Not all things have benefits.

    The argument that What if it works? is no better than the same argument turned around to discourage everything. What if something goes wrong? We need to deal with the real risks and the real benefits. The current level of evidence shows that the only appropriate use is as part of a well done clinical trial. Everything else just adds to the anecdotarhhea.

    This means people are using it, and this means the research becomes imperative as far as I am concerned.

    The research is being done. Using low dose naltrexone is not a good idea, outside of properly designed trials.

  20. KB says:

    A few points:
    The fact that people have tried LDN and say their symptoms/diseases have improved is intriguing, but to me it acts in the same place as the pilot studies. I don’t think it’s true that the pleural of anecdotes isn’t data (well, grammatically it’s true), but I do think it’s true that the pleural of anecdotes is a non-controlled, unblinded, self-selecting set of data that has plenty of bias. It’s basically a crapshoot as to whether you’re getting a placebo effect, another treatment, or the natural variation of the disease is really causing the improvement. This is the case if there’s three people who report improvement, or 3,000.

    You need good studies before you make money by selling the drug to people with the promise that there’s a chance they’ll get good results. It’s not enough to say, “some people get better, some people don’t,” you should be able to give a percentage to put behind that statement: “25% of people with your disease get better on this drug, do you want to take it although it has these side effects?” And even if it’s cheap and generic, there’s still a manufacturer making money, who might not be able to if another company gets the three year exclusivity. The money door swings both ways!

    While there are areas of drug research that are not explored as much as they could be because of lack of funding (like for third-world diseases), that doesn’t mean it’s not studied at all. And, as was said above, if you have a disease with a foundation whose purpose is to make money or ask for funding for research, there you go! You should take up your complaints with them.

    Also, acetaminophen is widely available as a generic, and there are tons of studies done on it regarding its safety, use as a treatment for heart disease, and for cancer prevention. And you can buy any drug online, yet drug trials continue because pharmaceuticals still expect to make money off them.

  21. Robin says:

    It sounds like it has potential to treat chronic pain? Treating a range of illnesses and symptoms isn’t necessarily a bad thing as long as it’s palliative pain relief. The options are limited. NSAIDS shred your plumbing, opiates are addictive, acetominophen doesn’t really work very well, corticosteriods have all sorts of problems. Having another treatment in the arsenal would help a lot of people. That alone would be worth University and government funded research dollars.

    They need to work out the basic science, like you say, and figure out what effect it has on the immune system, if any. It would be a shame if LDN were overlooked because it’s being embraced by questionable promoters.

  22. emiliano says:

    i’m taking ldn since last sect.07 for my spme with big improvment on health and life quality.
    i’have been on crab meds for over 4 years and my conditions were always worse and worse.science shall test and verify every treatment,i know,but what that i do not understand is why scientists give aproval

  23. goldel777 says:

    Hi,

    I was diagnosed with Grave’s Disease in 2004 – with the antibodies to prove it. I started Low Dose Naltrexone in early October and was testing in Feb again for Grave’s – I am testing negative. Now my doctor just wanted to say I never had Grave’s but when I referred him to my earlier tests he changed his mind. My previous doctor he told me that once you have the Grave’s antibody you never get rid of it – that you always will have Graves. It’s this kind of absolute thinking that causes us to bypass empirical knowledge and ignore our own inherent wisdom and causes us to distrust ourselves. Although I still continue to have Hashimotos, I am extremely greatful that there is a community supporting Low Does Naltrexone and that I have become part of it.

    Regards,

    Lori

  24. emiliano says:

    approval to meds that are more dangerous that good and do not want to test ldn that has a lot of positive testimonials for a lot of deseases.
    i belive that the right way is to verify with a trial on several patz.and eventually( on the basis of the results out coming fron the trial )disproving the ldn treatment,not continue to denigrate it on the base of theories and going against the testimony of several users that confirm it works greatly on this or that other desease.

  25. pcal says:

    I question the motives of the author of this story more than the prostilizers for ldn.Why,you might ask.Follow the money….Here we have lly,pfe,mrk and a host of lesser companies who in aggregate have Tillions of $ and the clout to control every drug dispension and uses approval.Side effects be damned,full speed ahead.When Viagra and associated drugs were compounded the primary use of today was’nt in the targeted area.Now it is the most prescribed but least understood drug prescribed but it hasn’t slowed down the doctors giving samples and script to every male that is able to get through the door.I know of one friend who was 86 and wife 80 and he got a sample.She had suffered 2 strokes and was wheel chair bound ,he had had cab (4 vessel),but the doctor gave Hal viagra,100mg.I told him in no manner was he to open and take that pill.Throw it out. But I digress,This is the “ethical”way to pay back all those medical school bills? If viagra is easy to get from the doctors:They will write a script for nalrexone.Now to get it fomulated down is get 10/50mgs, by crook or hook and if your IQ is over 100 you can get it mixed down and divided into a close approximation of the correct dosage. The medium to use is powdered milk or whey protein.It isn’t critical if you don’t get it perfectly to the .0045gm but you will get it within 10% tolerance by using one of the cheap chinese scales from ebay.Cheap as you want to go is $20.I can attest to the accuracy of the one I have.Put the whole pills in with a small amount of the filler and crush it.Then put it in the small blender that has a low speed control and mix it to the dosage amount for each 500mg to contain the 4.5 mg naltrexone.You get about 11 doses per 50mg tablet.Because of the color difference between the filler and naltrexion you can be sure its a the proper dispension. In sumation;I like these sites that give us a forum but you will note that every self confessed medical type posting here is not supporting any use of LDN.You can’t expect them to shoot themselves and their income is threatened at every turn.Some are really in the field because they want to help people but most are in it for the money.pcal

  26. bwmbagus says:

    dear Rogue Medic, it is evident that your time on this earth is not being limited by a killing disease like mine is. that is why I am willing to do the research and use my highly educated brain to make my own choices.
    Regarding safety of LDN. Naltrexone is prescribed at 10 times the dose to pregnant women without risk to the baby and I know of one doctor who has used ldn for 10 years. It probably has a risk for someone but fat is, LDN is safer than Paracetamol, and that can be bought over the counter.
    I don’t encourage people to choose without science either. I am lucky that I am smart enough to understand the biochemistry, microbiology and pharmacy of my condition though and so my choices are valid and you for one have NO right to tell me not to use LDN and no right to tell me not to inform others about what we do know about it – scientifically.
    What is intriguing is that the doctors prescribing LDN report very high success rates in their patients too, over two thirds even with cancers!
    So you see Mr. medic, you need to brush up on your biochemistry and microbiology a lot to keep pace with those of us trying to survive disease driven death sentences. You see, we are motivated to research al the drugs offered us, and the ones we are offered are toxic, high risk and very very expensive.
    You are going to have a hard job stopping us using LDN and we will get this research done, remember, around 100,000 people use LDN worldwide now so we have a statistically significant but unquantifiable number of anecdotes already and a lot of small scale science.
    If you are a scientist who can make a difference, then I suggest you get you finger out before we swamp the world with unresearched LDN and you won’t get the chance to do the science before LDN is everywhere and that is not acceptable to us either.
    After al, research is done to help us, not to help scientists or drug companies – in theory – so when we say get to it, you really should listen to that, especially when we are saving someone billions by not using expensive and dangerous but researched drugs!!

  27. Rogue Medic says:

    # bwmbaguson 06 May 2010 at 12:29 pm

    and you for one have NO right to tell me not to use LDN and no right to tell me not to inform others about what we do know about it – scientifically.

    Then sue me.

    This is an experimental use of the drug. The use is being studied in appropriate experiments. Advocating for use before there is evidence to support that advocacy is irresponsible.

    Sue me, again.

    What is intriguing is that the doctors prescribing LDN report very high success rates in their patients too, over two thirds even with cancers!

    Please provide a link to the research, or are you just irresponsibly touting magic?

    And feel free to sue me.

    So you see Mr. medic, you need to brush up on your biochemistry and microbiology a lot to keep pace with those of us trying to survive disease driven death sentences.

    I think your tin foil hat covered your eyes as you were typing that, because it makes no sense. You do not have any idea what know about biochemistry and microbiology, but you claim that I need to know more to keep up with terminally ill people?

    Regardless of the microbiology and biochemistry, if the treatment does not demonstrate efficacy, then it is only a placebo.

    Will you understand that better by being closer to death? Is this the Jenny McCarthy A mother just knows line, just changed to A terminal patient just knows?

    If you truly have a terminal illness, I wish you well. You may have nothing to lose by experimenting on yourself, but your doctor should be better able to address that.

    You see, we are motivated to research al the drugs offered us, and the ones we are offered are toxic, high risk and very very expensive.

    So, basically this is just a feel good about placebos rant that you are adding to the comments. You push placebos.

    Sue me.

    You are going to have a hard job stopping us using LDN and we will get this research done, remember, around 100,000 people use LDN worldwide now so we have a statistically significant but unquantifiable number of anecdotes already and a lot of small scale science.

    That is one of the best nonsense lines I have ever read – we have a statistically significant but unquantifiable number of anecdotes.

    Darn! I was laughing so hard, I stopped clapping for Tinkerbell. You killed Tinkerbell! You b@#%^&*!

    Is that quantum unquantifiable or just regular unquantifiable?

    Sue me.

    If you are a scientist who can make a difference, then I suggest you get you finger out before we swamp the world with unresearched LDN and you won’t get the chance to do the science before LDN is everywhere and that is not acceptable to us either.

    But you are the one encouraging the use of LDN outside of appropriate experiments. I am just pointing out that the appropriate research is being done and that we don’t know if this works.

    It would be unethical to recommend a useless treatment, although the alternative medicine pushers do this all of the time.

    Almost forgot – Sue me.

    After al, research is done to help us, not to help scientists or drug companies – in theory – so when we say get to it,

    Yes. The research is being done to help you. Undermining the research is not in your best interest. Is it?

    When you say Get to it, I roll my eyes and repeat that there is already research being done.

    Sue me.

    you really should listen to that, especially when we are saving someone billions by not using expensive and dangerous but researched drugs!!

    I guess that the part that you do not understand about research is that it is not cheap. A lot of the cost of real medicine comes from the research that is done to assure safety and efficacy.

    Generic manufacturers do not have to pay these costs. They only have to demonstrate equivalence, which is much, much cheaper. The advertising costs are also lower. Therefore generic drugs are significantly cheaper.

    You are encouraging people to take medication for an experimental indication just because it costs less. You claim that it works, but you have no evidence. Studies are being done to see if the drug works, but you want people to take the experimental treatment anyway.

    we have a statistically significant but unquantifiable number of anecdotes.

    Only 2 exclamation marks? I think that rant deserves several more and the obligatory interjection of the number 1.

    Furthermore, Sue me.

  28. rknight says:

    # Rogue Medicon 05 May 2010 at 7:20 pm

    “The research is being done. Using low dose naltrexone is not a good idea, outside of properly designed trials.”

    I happen to agree with almost everything you say, despite taking/trying LDN myself.

    The thing is, it’s a matter of cost and risk to benefit ratio. The other drugs I’m taking are very expensive, moderately risky, and don’t achieve complete remission. They’re better than steroids, but that isn’t saying much. For me, and probably many people, it’s a gamble that makes sense.

    I read the LDN mailing list digests daily, though, and it’s horrid. I want to quit taking LDN in response to the crazy woo that is thrown around every single day.

    I don’t mind anecdotes– I’m not looking for success, I’m looking for serious side effects which will make me stop taking LDN. Unfortunately, that’s even fraught with problems– the other day, I was reading about someone who was complaining of bloody stools because of LDN; but the patient listed their other supplements, of which iron, notoriously hard on the GI system, was one.

    The latest fads of alternative medicine seem to be the Specific Carbohydrate Diet, gluten-free and/or lactose-free diets, colloidal silver, a couple of amino acids, and homeopathy. Every time someone compares LDN to an alternative medicine, I have to go back and read some of the published articles to reassure myself.

    What I wish people would realize now, is that anything with the potential to have a beneficial effect also has the potential to have a detrimental effect; and that anything with no potential side effects is entirely a placebo.

    Anyway, as far as LDN goes, I’m beginning to think that it’s mostly a placebo. There’s a phase 2 that’s been recently completed for Crohn’s Disease, and the manuscript is being shopped around for publication. Presumably it supports a Phase 3, but you can bet I’m going to be looking closely at their statistics.

  29. My wife was given 2 to 6 months with NSCLC lung cancer and now 21 months later she is heading for remission. Thanks to ALA and LDN. we set up a database at http://www.ldndatabase.com to track of other’s on LDN

  30. Margaret87 says:

    “Recent claims made for low dose naltrexone (LDN) fit nicely into this model – a medical intervention with interesting research, but in a preliminary phase that does not justify clinical use. And yet proponents talk about it as if it is a medical revolution.”

    Not so recent – people have been benefiting from LDN for 20+ years.

    “Proponents” – the vast majority are users, and we wouldn’t use it if it didn’t help.

    As a user of LDN I don’t talk about is as a “medical revolution”, nor do the other users I’m in contact with. What we do say is it can have remarkable results for many people because it can control life-threatening diseases, and diseases that cut their active life short.

    With a safety record second to none, users have decided it was worth a try, and there are many like me, who have never regretted that decision for one moment.

    “Scientists do not talk of “boosting” the immune system because this concept is too vague to be of any use.”
    Nor do people who use LDN, nor do LDN scientists or doctors. We know it’s a meaningless in this context.

    I wonder what you have to say about conventional medications that suppress the immune system. I’ve never understood how suppression of a system that defends us is supposed to be beneficial (unless you’ve had a transplant that you’d otherwise reject).

    In my view, your article condemns LDN because you don’t (for the time being anyway) need it, and because it is not a money-spinner that the pharmaceutical industry will invest in so, understandably, they can’t finance trials on Naltrexone in low dose form. But that doesn’t mean it doesn’t work. It’s not trials that make a medication work, it’s the medication itself.

  31. Harriet Hall says:

    Margaret87 said “we wouldn’t use it if it didn’t help.”

    That’s exactly what doctors and patients said for many centuries about bloodletting to balance the humours. People routinely believe all kinds of ineffective treatments have helped them. That’s why quacks thrive. That’s why we need science. Maybe you are like a friend of mine who is convinced she would be able to tell if a remedy she took was a placebo. No, she wouldn’t, and that’s the reason we have to do placebo-controlled trials.

    “your article condemns LDN because you don’t (for the time being anyway) need it, and because it is not a money-spinner that the pharmaceutical industry will invest in”

    No, the article doesn’t condemn LDN, and anyway, no one on this blog would condemn any treatment for those reasons. What the article condemns is recommending treatments prematurely before the evidence is in. The history of medicine is full of promising remedies that people swore by but that turned out not to work. Just statistically, it is more likely that a new treatment will not pan out than that it will.

    No one is denying your right to try any new treatment and to continue it if you think it works. But you should recognize that you are essentially offering yourself as a guinea pig in an uncontrolled experiment. You should recognize that there is a possibility that you are wrong. Science teaches us a hard lesson that not everyone is capable of learning: if we go by personal experience rather than scientific evidence, we frequently get things wrong. As Richard Feynman said, “you must not fool yourself–and you are the easiest person to fool.”

  32. johnm says:

    Naloxone, Naltrexone, Dextromethorphan

    The author in his article comments that he could find no significant PubMed information on Naltrexone used at low doses to treat disease. If he had done a search on Naloxone (similar to Naltrexone, LDN) or Dextromethorphan and microglia he would have found what he was looking for.
    There has been significant research done by Dr. Hong, Head of the Pharmacology Group, NIH on low dose naloxone, dextromethorphan (cough syrup) and similar opioid receptor type drugs. Their work was with rodents. They do not say much about endorphins but they do believe most neurological disease is caused by over activated microglial (killer) cells which cause chronic brain inflammation like MS and Parkinson’s. Their work has shown that low doses of these drugs significantly inhibit neuro-inflammation.

    I have been aware of LDN for 7 years now. My wife who was diagnosed with Parkinson’s about 7 years ago has been on LDN for 6 years this July 4. While her mix of PD drugs changes, she has not had much of an overall increase in these meds. She seems as able now as 6 years ago. If one believes that PD and other neurological diseases are caused by brain inflammation, Dr. Hongs research indicates that low doses of the mentioned drugs can slow disease progression.

    Below are research papers that should strongly suggest there is more to LDN than anecdotal chatter. You don’t have to be a scientist to understand the details but if you spend some time reading, you should get a good idea on the research.
    John

    http://www.aapsj.org/view.asp?art=aapsj080369
    http://www.fasebj.org/cgi/content/full/19/6/550
    http://jpet.aspetjournals.org/content/305/1/212.full
    http://www.ncbi.nlm.nih.gov/pubmed/14734632?dopt=Abstract
    http://pharmrev.aspetjournals.org/content/56/3/351.full

    http://brain.oxfordjournals.org/cgi/content/abstract/128/11/2665

    http://jpet.aspetjournals.org/content/302/3/1212.full?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&searchid=1114795483638_1760&stored_search=&FIRSTINDEX=0&minscore=5000&journalcode=jpet

    http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T0F-405KFCC-B&_coverDate=04%2F30%2F2000&_alid=282998477&_rdoc=1&_fmt=&_orig=search&_qd=1&_cdi=4861&_sort=d&view=c&_acct=C000057242&_version=1&_urlVersion=0&_userid=2425064&md5=c64ae375b7f9454a7b11d65a3cfcc237#toc12

  33. BillyJoe says:

    Margaret,

    “What we do say is it can have remarkable results for many people because it can control life-threatening diseases, and diseases that cut their active life short.”

    You may say that, but that doesn’t mean you are correct. What you need are clinical trials that demonstrate the effectiveness because, as we all know, anecdotal evidence is extremely unreliable.

    “I wonder what you have to say about conventional medications that suppress the immune system. I’ve never understood how suppression of a system that defends us is supposed to be beneficial (unless you’ve had a transplant that you’d otherwise reject).”

    First you say that you have never understood how suppressing the immune system is supposed to be beneficial and then you immediately follow this absolute statement with an example that shows how immunosupression can be benficial. Strange. But immunosupression has also been shown to benefit auitoimmune disease. In these diseases, the body’s immune system attacks the body itself and hence it seems logical to suppress it.

  34. BillyJoe says:

    goldel

    “I was diagnosed with Grave’s Disease in 2004 – with the antibodies to prove it. I started Low Dose Naltrexone in early October and was testing in Feb again for Grave’s – I am testing negative. Now my doctor just wanted to say I never had Grave’s but when I referred him to my earlier tests he changed his mind. My previous doctor he told me that once you have the Grave’s antibody you never get rid of it – that you always will have Graves. It’s this kind of absolute thinking that causes us to bypass empirical knowledge and ignore our own inherent wisdom and causes us to distrust ourselves. Although I still continue to have Hashimotos, I am extremely greatful that there is a community supporting Low Does Naltrexone and that I have become part of it.”

    I think you are confused.

    Do you have Grave’s disease or do you have Hashimoto’s disease?
    One causes high levels of thyroid hormone and the other causes low levels of thyroid hormones. One responds to anti-thyroid drugs and the other responds to thyroid hormone.
    After the treatment of Grave’s disease with anti-thyroid drugs, the antibody levels often return to normal and, if they do, there is a good chance that you may have no further recurrence of the disease.
    It seems to me you fall into that category.

    If that is the case, then the naltrexone is probably had no effect whatsoever.

    See “Treatment” -> “Antithyroid drugs” at:
    http://en.wikipedia.org/wiki/Graves'_disease

  35. BillyJoe- Well, sort of. Hashimoto’s is an autoimmune disorder that gradually destroys the thyroid gland. My understanding (via my endocrinologist) is that is can produce nodules that become “hot spots” and produce excess thyroid hormone. Regardless, before the thyroid is destroyed one suffering from Hashimoto’s can have fluctuating thyroid levels and fluctuating symptoms. A couple months before I was diagnoses I went to the doctor with symptoms that were equally hyper-hypothyroid.

    But this site says it better. http://www.cumc.columbia.edu/dept/thyroid/thyroiditis.html

    “Occasionally, if you have Hashimoto’s’ thyroiditis, you may develop an overactive thyroid (hyperthyroidism), rather than the usual hypothyroidism. Too much thyroid hormone is the result of thyroid hormone release into the blood stream as thyroid cells are destroyed. This hyperthyroid period is generally short, and is followed by a period of time when the thyroid functions properly. Sometimes, however, this period of normal thyroid function is short-lived and as scarring sets in, hypothyroidism results.”

    Also a quick search indicates that some thyroid antibodies can be found in both Graves and Hashimoto’s patients.
    http://www.labtestsonline.org/understanding/analytes/thyroid_antibodies/test.html

    And like many autoimmune diseases it seems to have a flare-up pattern. A few people I know report rather intense periods hypothyroid or hyperthyroid symptoms that then went away and didn’t come back for years. (this is anecdotal, though).

    goldel
    You may already know this but, one thing to be aware of is that both Graves and Hashimoto’s can carry an increased risk for thyroid cancer. So it’s a good thing to keep up on periodic medical checks of the thyroid.

    This has been a public service announcement by micheleinmichigan. Thanks for listening. ;)

  36. Drat, trying to figure out comment html and screwed something up. Please excuse my mess.

  37. bwmbagus says:

    the one thing that comes oiut of all this once again is the need for research.,
    The medic seems to think I advocate use of untested drugs. I do not. Ii want the science too be done, but many of us here have had to make decisions on little good data and so we help each other the best we can.
    Tht madic guy is a true fool, falling for such a great wind up. At least he doesn’t have a clue. Science is judged on confidence intervals so there is no proof, only degrees of certainty and also risk management.,
    Sorry, but that makes LDN a decent bet!

  38. KB says:

    This is bugging me: to get a “confidence interval” or deem something “statistically significant,” you have to do math. Like, with numbers. These terms have definitions, and those definitions involve mathematical formulas. To manage risk, you need to know what the risk/benefit ratio is, and that’s an actual number. It might be a percentage, it might be a fraction, but it definitely involves numbers. These terms do not mean, “I read the internet and came away with a certain feeling about it.” With the lottery, or horse racing, or even cards, you know your odds of winning the bet, and the odds are expressed in numbers, not feeling. In fact, it’s ignoring the numbers and feeling like you’re going to win that causes people to bet on horses or the lottery, and for the most part, they lose. The entire purpose of doing a good clinical trial would be to give you the numbers, to let you have a reliable risk/benefit ratio. So no, I would say a drug that has no odds, no numbers, no mathematical predictions available for working is not a decent bet. It’s more like a pig in a poke. It’s a situation where you should gamble only what you’re willing to lose. (Which some people on this thread might say they’re already doing. I’m sorry I’m a little harsh about the maths.)

  39. bwmbagus says:

    Luckily I did a physics degree and have comprehensive understanding of maths and science.
    A confidence interval is a figure extrected from a gaussian curve, and relates too sample size, standard deviation and skew and measures the dgree of confidence by the areea under the curve which falls within the experiments hypothesis.
    Risk/Benefit analysis. Drug is known to be safe, so the risk is very very low. Benefit has some research and good biochemistry behind it. Also there is around 15 years of clinical experience by a number of doctors which suports their use of the drug, though the drug is far from being a cure and many have problems getting benefit from it.
    But KB, you merely suport everything I stand for which is more research. My choice is my own and my mind was lost to the MS once. After LDN, my mind works again.
    I can now read an entire copy of scientific american in one go now! I could manage no more than about 500 words before LDN. Something has changed. Also, I am a scientist so I did not believe that LDN would help when I took it so it’s an amazing ‘placebo’.
    The odds that are known are that doctors using LDN claim better than 60% successful use, and they have good samples for clinical data.
    You see, medecine is about using your noddle as much as listening to drug reps.

  40. BillyJoe says:

    michelinmichigan,

    Hyperthroidism is not synonymous with Graves’s disease.
    And hyothyroidism is not synonymous with Hashimoto’s disease.

    If she had used the terms hyperthyroidism and hypothyroidism, instead of Graves’s disease and Hashimoto’s disease, it would have made more sense.

    My guess is that she had Grave’s disease (causing hyperthyroidism) which was treated with anti-thyroid drugs after which her thyroid hormone levels and antibody levels returned to normal.

    If that is the case, talking the naltrexone may be providing no benefit at all.

  41. If I had to guess, the answer would involve aliens, sunflowers, an asteroid and Clive Owen. I mean, if we’re guessing why not make it interesting. ;)

    Honestly, it sounds like either one of the doctors misdiagnosed or she misunderstood. The naltrexone is sort of irrelevant since she still has Hashimoto’s. I’m not too sold on another medication to take in addition to Synthroid. What’s the point?

  42. KB says:

    I would like to add my two cents to the thyroid discussion! I have lots of schoolwork to do, and this is funner.

    I think things may have gone exactly as goldel/Lori said. Although it would be pretty unlucky, it wouldn’t be unheard of for someone to have more than one autoimmune disease. Both Grave’s and early Hashimoto’s can cause hyperthyroidism, so upon hearing her history, it would make sense for her current doctor to think she had only Hashimoto’s, as that would be more likely. She doesn’t mention what therapy she got for Graves, but another disease that causes damage to the thyroid (like Hashimoto’s) could take away the gland’s ability to produce enough hormone to make someone hyperthyroid. It would also decrease the amount of TSH receptor that the Grave’s antibody is attracted to. With less antigen (TSH receptor), there could be less stimulation to make an antibody. (Maybe? I’m not entirely sure this is how autoimmune diseases work.) So one could be the “cure” of the other. It’s even less likely that the LDN caused a cure of the Graves, given that she has Hashimoto’s. Or it could have just been treating the Graves with medications and whatnot.

    I’m not sure why her first doctor told her she would always have the antibody. Maybe he was trying to warn her of the possibility of recurrence after she took a treatment for it. Or maybe he was saying you don’t treat for the antibody, but you treat for the overproduction of thyroid hormone. Or maybe it was Clive Owen.
    : )

  43. KB “but another disease that causes damage to the thyroid (like Hashimoto’s) could take away the gland’s ability to produce enough hormone to make someone hyperthyroid.”

    Oh, combating autoimmune thyroid diseases, kinda like Mothra and Godzilla. I like it.

    I also don’t know about the antibody test. I don’t think I’ve ever known someone who was tested for thyroid antibodies after the initial diagnoses. I’m not a medical person, but I was under the impression that other autoimmune antibodies can test negative after an initial positive, like the ANA for lupus. But I don’t know much about Graves.

  44. bwmbagus says:

    The thing i really don’t understand is why people with no real interest in LDN would oppose the research that would settle the argument.
    We know we are saving the UK NHS about 100 million pounds a year by using LDN, so regardless of opinions about LDN, the research should be done. I for one want to know if this is just a placebo, even though I really don’t think it is just a placebo.
    The use of met-5-enkephalin to defeat tumours supports the claims about LDN very strongly and that is not controversial!
    LDN stimulates met-5-enkephalin as well as beta endorphin which contains met-5-enkephalin in the molecule.
    I suggest that those who resist this research, do so for poersonal motives, and if that is drug company related motives, then we are talking about protectionism of profit. Profit made from perpetuating poor quality therapy for deadly diseases – ie the use of cytokines to treat many of these diseases listed as amenable to LDN.
    So, if anyone dare answer me, what exactly is the opposition to funding LDN research?

  45. Harriet Hall says:

    bwmbagus said “The thing i really don’t understand is why people with no real interest in LDN would oppose the research that would settle the argument.”

    Who are these people who are supposedly opposing the research? I haven’t heard anyone suggest that.

  46. bwmbagus on the absence of research on effectiveness and efficacy of LDN:
    “We know we are saving the UK NHS about 100 million pounds a year by using LDN.”

    If you do in fact know that, it’s because the research has been done. You have no basis for complaining that the research has not been done, because it has.

    If the research has not been done, then you do NOT know that.

  47. bwmbagus- I may have missed some comment, but the article does not suggest there should not be research. Dr. Novella says – “Meanwhile, the LDN community are turning a promising if preliminary treatment into essentially what is snake oil by promoting it for an implausibly long and contradictory list of indications. They are making the classic mistake of extrapolating prematurely from preliminary evidence, and relying heavily on anecdotes. Anecdotes are just another form of preliminary evidence (a particularly weak form at that) that should only be used to indicate promising new research, but not as a basis for clinical claims.

    Ironically, LDN promoters may in fact harm research into LDN by giving it a bad name. Researchers may be reluctant to hitch their careers, or funding agencies commit resources, to a treatment that has a dubious reputation.”

    I read the article to be thumbs up on research, thumbs down on dubious and contradictory claims.

  48. bwmbagus says:

    Alison.
    The research has not been done.
    There are about 7000 users of LDN in the UK. I use it instead of Mitoxantrone or Beta Interferon. That means the government is not spending 7000 a year or 15000 a year respectively on my care. Some drugs in ‘normal’ use are more expensive, so 7000 * an average of 15000 comes to 105 millions pounds a year saved.
    But the research for phase 2 and phase 3 efficacy trials for LDN have not been done, or else you must give me the references.
    michele – I am not relying on ‘anecedotes’ at all. I take my advice from a doctor who prescribes LDN and others should seek such medical advice too and not rely on their feelings.
    I am not an LDN promoter and I have fought those who are, I am an LDN informer and campaigner for research and I have fought hard to stop LDN turning into snake oil – FYI.

  49. bwmbagus, if the research has not been done then you do NOT know if LDN is saving anyone any money. You can’t have it both ways. Either you know (because the research has been done) or you do not know (because the research has not been done).

    You don’t know whether LDN is acting as anything other than a placebo for any given problem. If it is even sometimes simply a placebo, then presumably at least some of those 7,000 people could stop spending their money on LDN and take inexpensive homeopathic granules instead. LDN could be costing money, not saving it.

  50. Margaret87 says:

    Harriet
    “No one is denying your right to try any new treatment and to continue it if you think it works.”

    My doctor refuses to prescribe LDN so I have to get it off-prescription. Many others are in the same position.

    Many people in Europe (myself included) who take LDN and/or who know someone who has benefited from it are actively campaigning for LDN trials and are in contact with various health authorities to this end.

    If market-driven “science” is not able to investigate LDN then scientific investigation that is not market-driven is needed.

    In the meantime there’s no scientific proof that LDN does not do what’s claimed for it.

  51. Margaret87 says:

    “First you say that you have never understood how suppressing the immune system is supposed to be beneficial and then you immediately follow this absolute statement with an example that shows how immunosupression can be benficial. Strange. But immunosupression has also been shown to benefit auitoimmune disease. In these diseases, the body’s immune system attacks the body itself and hence it seems logical to suppress it.”

    The immune system of transplant patients attacks the new organ. That’s not the same as auto immune disease. The difference looks obvious to me.

    You haven’t understood my point. A suppressed immune system surely exposes the body to infection. In fact too many people do suffer additional diseases due to immuno suppressants.

    Personally, I not only had RA but also a carcinoid tumour. They found the tumour last summer, small and benign, 3 months after I started LDN. They wanted to know if it had spread before deciding if it should be sectioned or medicated. But by November the scans showed no trace of any tumour …. so … no operation, no meds apart from LDN.

  52. ZenMonkey says:

    To get this out of the way, as far as the Graves’ goes, I have it in remission, but while it was active, I was in touch with many patients who did in fact have both Graves’ and Hashimoto’s. It’s not as unusual as it might seem.

    I was very glad to read this article. I believe I even requested Dr. Novella write something on this subject some time ago. This was back when a friend of mine who was a supporter of LDN turned into a frenzied acolyte of it. I have chronic fatigue syndrome and am disabled by it, so I was interested in her positive experience with LDN. However, the red flag definitely went up when I saw her start to recommend it to pretty much anyone who had any kind of remotely similar illness or condition. I found it hard to do my own research as almost everything I came across was some kind of pseudoscientific cheerleading that didn’t give me the facts I was looking for (and found here).

    As others have mentioned, there is a population of patients who are daily sick, tired, in pain, and willing to subject themselves to treatments that have not been definitively vetted by science. Those of us who are also still critical thinkers and supporters of evidence-based medicine are often in a strange situation when it comes to something like LDN, where the siren song of fellow patients who have (or think they have) experienced benefits is very attractive despite our preference for established science. In cases where the treatment is pretty much benign — at worst, useless — I’m apt to consider giving it a try even if the skeptical part of my brain is yelling at me for it. Healthy people who have never been in this position are often dismissive and judgmental of this behavior, which is fine as they have the luxury to be so.

  53. bwmbagus says:

    Alison, do you know any homeopathy – which is placebo – that can be bought for £15 a month?
    Therwe is the proof of savings. They offered me a drug costing £7000 a year and I use one costing £182.50 a year. Mltiple that by 7000 and you get the point unless maths is not your strong point. But I still want this on the NHS after proper trials. (If this is a placebo, I want this placebo and no other!
    My advice to anyone out there is DO NOT TAKE LDN UNLESS YOU ARE WILLING TO TAKE THE RISK!
    LDN has no history of harm or serious side effects thyough so don’t worry about trying it.
    There are a lot of opponents of LDN here, but I guess they don’t need to make the sort of choices some of us do. To those that do, it’s up to you to make your own choices, which takes me back the point I am making – WE DEMAND THE RESEARCH AS A BODY OF SICK PEOPLE USING THIS DRUG ALREADY AND SAVING ABOUT 15000 POUNDS A YEAR EACH TO THE NHS. Do the maths if you can!

  54. bwmbagus says:

    One other thing, if opioid growth factor can restore a normal function to the immune response, ie fix it, why woulkd you wish to suppress it except in cases of transplants when sensetisation cannot be achieved.

  55. “Therwe is the proof of savings. They offered me a drug costing £7000 a year and I use one costing £182.50 a year. Mltiple that by 7000 and you get the point unless maths is not your strong point.”

    bwmbagus, you are telling me that you know ALL the following things:

    1) You know for sure that there are 7,000 people using LDN in Britain today.

    2) You know for sure that each of those 7,000 people are using LDN to replace a £7,000/year alternative. That is,
    — they are not using it to supplement an existing drug regimen;
    — the replaced (not supplemented) drug regimen that they are not using would be £7,000/year;
    — this is the case for each of the 7,000 people using LDN in Britain today.

    3) You know for sure that this substitution of LDN for evidence-based medicine is not causing anyone to receive less-than-optimal treatment. For instance, you know for sure that none of the 7,000 people using LDN to replace the £7,000/year therapy that their doctors prescribed them are using it in place of chemotherapy for cancer. Not one single user is delaying an effective treatment available now which will result in requiring a more expensive treatment later.

    4) You also know enough about LDN to explain another £50M per year of savings. 7,000 people saving £7,000 in medication costs per year save £49M per year. You stated that LDN users save the NHS £100M per year. Where do the other £50M come from?

    You know an awful lot about LDN use already. If there is no research, how do you know all these things?

  56. bwmbagus says:

    it is known to be approaching 7000 – yes, i have researched this.
    The cost of replaced drugs tends to be anything up to 45000 pounds a year. We estimate an average of £15000 a year which is what my beta interferon cost.
    We might all be delayi9ng an effective alternative too, that is why I want the research to prove the point or not.
    7000 people saving an average of 15000 is 105 million.
    Anyhow Alison, what is your problem. I don’t advocate use of LDN until it is trialled but I do want the trials for the sake of the people alrteady fooled by this placebo. Don’t you get this? I am a scientist, I want the research done and now, because people may well be denying themselves and effective treatment, me included and I want to know.
    The worldwide stimate of LDN use is around 100,000 people by the way and these figures come from the pharmacists who supply LDN to prescriptions.
    Believe me, I thought LDN was a joke at first until I spoke to a doctor who prescribes it. Then i found it was safe enough but still didn’t believe it would help but didn’t like the idea of Mitox.
    I have not progressed in my disease since using LDN which was 18 months ago.
    If you were me, would you give up?

  57. bwmbagus says:

    and Alison, I didn’t say there was no research, only no full scale trials. There is 30 years of research. Use my website – ldnnow dot com or for pure science by the researchers, ldnscience dot org.
    Also – try reading

  58. bwmbagus,

    Personally I use medication that some people would be happy to tell me is not evidence-based. I’ve been taking Sertraline since 1997 and it changed my life immediately for the better. I am convinced it works. There are people who would claim that Sertraline has not been adequately tested for long-term use; that there are no objective tests proving that I was a suitable candidate for it or that I have improved; that there are no objective tests for my condition, period. But if I knew that I wouldn’t be able to get medication any more I would probably arrange to terminate my life instantly while I was still able to execute the task efficiently, rather than waiting to trail off into misery and homelessness. So I am not going to tell you that LDN does not work for you.

    As the author of this post emphasizes, and as commenters have consistenly pointed out, the use of LDN is plausible for some conditions and the research currently being conducted is important.

    My objection is simply that you cannot know things for which there is no evidence, and evidence is provided by research. You simply can’t say, “I know X to be true and I demand the research to prove it.” Until the research proves it, you don’t know. You might have an educated guess, you might have a hunch, you might hope, but you don’t know.

    As xkcd quotes, “Science isn’t something to do to prove that you’re right. Science is what you do to become right.”

    That’s all.

  59. bwmbagus says:

    http://www.ldnnow.net/documents/ReferencesLDN.pdf
    Read that and then read the references. When you realise that a lot is known about endorphins and what they do in the body, you too may get as angry as me about this scientific apathy.
    I find it so hard to believe that scientists can overlook and ignore such stuff, but then again, it all seems quite far fetched, much like penicillin did when the original researcher tested it on himself to prove the point.
    Medical science gets caught up in protecting favourite theories, and to be honest, the standard of evoi9dence for many6 drugs is actually quite bad.
    I am a scientist so what I say is based on research. There is more besides that lot listed in that document. Since then we have had 2 or 3 new publications about LDN in small scale trials.
    Things are moving, but it may be too slow to benefit most people for the next decade or so.

  60. redplanet says:

    I began ldn last summer for IBS. Come winter I expected the usual psoriasis to arrive. It never did. Not on my scalp, ears, or its other usual places. It was an unexpected but very welcome outcome of ldn.

    Then I realized my overactive bladder wasn’t overactive any more.

    From my research, ldn is normalizing the immune system. This makes a lot of sense to me, especially if you think in terms of systems theory.

    I think sometimes you all speak too much and don’t pay attention to what is going on in front of you and you don’t listen when people tell you things are changing. Observational data is important. People are important. We all have to make decisions based on us as individuals, not an average from a trial or a double blind.

    I recently watched this video of a Stanford professor who teaches decision analysis and how he used it to show his oncologists their protocol was incorrect (though science based). They eventually agreed with him and changed the protocol. If you like numbers and have an open mind – and are willing to learn (which frankly it sounds like you would rather attack then do so, but I hope not), then watch http://decision.stanford.edu/classes/lessons-in-decision-making/2010/the-patient-from-hell

    It WILL challenge your belief in evidence based medicine but with a higher level of science. You have to watch it to understand why this is a more sophisticated and rational approach. Warning: it is technical and full of numbers and statistics and decision theory. Not for the faint or unfocused. I promise you will get something from it.

    (NIH is funding a new ldn trial for kids with Crohn’s based on results of one for adults. My theory on why it worked for fibromyalgia is that it normalized the thyroid which is really what underlies FM, I believe. Just a thought, not proclaiming it a fact.)

  61. B A Cullen says:

    What happened to “DO NO HARM” (to the patient)??? LDN (along w/ optimal doses of vitamin D3) does NO (nada, nicht, nyet) harm to the patient but could do very, very serious harm to the bottom line of the Industrial Medical Complex when (if) it becomes widely used. It IS working for my wife’s RA w/ no side effects. Anecdotal evidence from several Dr. acquaintances is that, overall, it does work well “as advertised” and better than the on patent money makers, when one is a available.

    There are a myriad of prescription drugs that DO HARM but make the industry so much money involved that the there is no incentive by anyone even remotely involved to pull the alarm.
    Cholesterol lowering drugs are a great example. Since the 60′s when the fibrazoles were introduced through statins, Zetia and the newer drugs, PhRMA has fanned the flames of the cholesterol myth w/ little actual benefit to patients but massive profits for the industry (w/ a 22% average after tax ROI – I’m tired of hearing the whining “…but it costs so much to bring a new drug to market…”). Statins do offer benefits, short term, after an event that have nothing to do w/ cholesterol lowering. Long term they do little more than make lots of money. The benefit:cost ratio is close to zero.

    I just came upon this site and have not had time to determine if it is just another industry supported site or not.

  62. Words2 says:

    The study that was done at PennState for Crohn’s and LDN involved 40 patients, and was funded by an NIH grant. The results were recently presented at a conference, and here is an abstract of the findings:

    http://download.abstractcentral.com/DDW2010/myddw/646.html

    646
    Naltrexone Therapy Improves Activity and Promotes Mucosal Healing in Active Crohn’S Disease: a Placebo-Controlled Trial
    Jill P. Smith1, Sandra I. Bingaman1, Francesca Ruggiero2, David T. Mauger3, Aparna Mukherjee1, Christopher O. McGovern1, Ian S. Zagon4
    1. GI and Hepatology, Medicine, Pennsylvania State University, Hershey, PA, United States, 2. Pathology, Pennsylvania State University, Hershey, PA, United States, 3. Public Health Sciences, Pennsylvania State University, Hershey, PA, United States, 4. Neural & Behavioral Sciences, Pennsylvania State University, Hershey, PA, United States

    Background: Accumulating evidence supports a role for endogenous opioid peptides in the development or perpetuation of inflammation. It is hypothesized that the endogenous opioid system plays a role in inflammatory bowel disease, and disruption of the opioid-opioid receptor interaction will reverse inflammation and promote mucosal healing. Methods: A randomized placebo-controlled double blinded study was designed to test the efficacy and safety of an opioid antagonist, naltrexone, in adults with active Crohn’s disease. Patients with confirmed Crohn’s disease and a Crohn’s Disease Activity Index score (CDAI) of at least 220 were randomized to naltrexone (4.5 mg daily) or placebo by mouth daily for 12-weeks. Subsequently, those who had received placebo were treated with naltrexone and those randomized to naltrexone continued on naltrexone for an additional 12 weeks to assess safety and maintenance of response for extended duration. Colonoscopies with biopsies were performed at baseline, weeks-12, and 24 to determine endoscopic and histologic scores by persons blinded to the treatments. The primary outcomes included the CDAI, endoscopic, and histologic inflammatory scores. Other outcomes included quality of life (QOL) according to the IBDQ and SF-36 surveys, and laboratory tests for safety. Results: Forty patients were enrolled and randomized into the study. Baseline CDAI scores (346±16.4) indicated moderate to severe disease. CDAI scores decreased significantly from baseline (p<0.001) in those treated with naltrexone, but not in placebo treated controls. Eighty-two percent of the naltrexone-treated subjects had at least a 70-point drop in the CDAI score indicative of a response and 45% achieved clinical remission (CDAI < 150). Endoscopy and histology inflammatory scores improved in naltrexone treated subjects (p=0.0019) with evidence of decreased mucosal inflammation, and restored crypt architecture. No endoscopic or histological change was found in placebo treated controls. No significant changes were noted in laboratory parameters or QOL surveys. Patients in the placebo group reported increased fatigue compared to naltrexone treated subjects (p=0.04) and two naltrexone-treated subjects had transient mild elevation in liver transaminases which resolved without interruption of therapy. Conclusion: Naltrexone induces mucosal healing and decreases CDAI scores in subjects with moderate to severe Crohn’s disease with minimal side effects recorded. Strategies to alter the endogenous opioid system provide promise for a novel treatment of inflammatory bowel disease in the future. (Supported by BMRP IBD-0180R and NIH DK073614).

  63. Margaret87 says:

    In this article the author describes his views on how pseudo science proceeds. He then selects various elements in the history of LDN as an example. But he has cherry-picked and has left out the elements in that history that don’t fit.

    He accepts that a daily dose of LDN will “chronically increase endorphin and enkephalin levels”, but unlike others does not accept the implications of the theory – that this increase of endorphin and enkephalin levels results in the correction of a faulty immune system. Others have tested the theory – Dr Bihari in his clinic and Dr Zagon in his laboratory have observed improvements, so have others. Over the years word has got about and a patient-led demand for LDN has grown. Subsequent pilot studies have confirmed these observations but calls for the kind of clinical trials required by the regulatory system have not been met.

    The author then gives a long description of translational research implying that LDN has failed to make it because it is not up to scratch. In fact it is a general difficulty within the regulatory system – see: http://nihroadmap.nih.gov/clinicalresearch/overview-translational.asp

    “Growing barriers between clinical and basic research, along with the ever the [sic] increasing complexities involved in conducting clinical research, are making it more difficult to translate new knowledge to the clinic – and back again to the bench. These challenges are limiting professional interest in the field and hampering the clinical research enterprise at a time when it should be expanding.”

    However the author ignores this general problem and instead blames “some advocates” of “promoting LDN as a breakthrough medical treatment for a long list of diseases and disorder, going well beyond the research.” He then assumes a supreme understanding about how the immune system works, and spots what he calls “red flags”.

    First, he rejects the observations made by clinicians, scientists and patients – that the failure of the immune system in both auto immune and non-auto immune diseases can simultaneously be corrected by LDN.

    Second, he accuses some people of saying LDN “boosts” the immune system. He then implies that it is “scientists” who use the word. I am not a scientist but I learned very early on that the word “boost” is inappropriate. This “red flag” is nothing more than a red herring.

    The second “red flag” may well be due to the author’s understanding of how the immune system works, and that would explain his hotchpotch conclusion based on his use of the word “boost”. If he used words, like “regulate”, “correct”, “repair”, even though they’re shorthand and unscientific, they would make more sense than “boost”. An immune system that is functioning as it should will, indeed, deal with those diseases – simultaneously (as in my case) in the same person.

    He then goes on to say “Truly promising and science-based treatments do not need an organization to promote them. The science will speak for itself.” If that were true no pharmaceutical company would need to market its products or lobby health authorities and practionners.

    In conclusion the author blames “LDN promoters” for the failure of the regulatory system with regard to LDN. However, this conclusion is easily paraphrased to suggest the real aims of the article, as follows:

    The vested interests of the powerful pharmaceutical industry will harm research into LDN by giving it a bad name. Researchers may be reluctant to hitch their careers, or funding agencies commit resources, to a treatment that would be a threat to profits. If the research is promising it will still get done, but if anything it is likely to be slowed by the efforts of the pharmaceutical industry.

  64. redplanet says:

    Kudos to the last couple of posters who seem to have more logic in their little finger than the raging “science” defenders have in their millions of words ranting against that which is not understood by them.

    Science is not what happens in a peer reviewed journal. That is one method of getting information out to the community about some research studies. Some are excellent, some are awful and most fall inbetween. I have always used them as one, and only one, data point in making my medical decisions.

    I will again post this link here, which is so critical to moving forward in science without the baggage of thinking that the way you have been taught is science, no questions asked. There is no room for such arrogance afor it holds back progress, critical thinkers, and those who push boundaries.

    From my earlier post – this is a video (full of numbers, facts, arguments and analyses) from a professor at Stanford who used decision analysis to save himself from Stanford oncologists using evidence based, science based medicine. They were not. He will show you why:

    http://decision.stanford.edu/classes/lessons-in-decision-making/2010/the-patient-from-hell

  65. Harriet Hall says:

    redplanet,

    I watched the video of “The Patient from Hell” and I think it sets up a straw man argument. Doctors are capable of the kind of analysis he describes; in fact, they do it all the time. He seems to be saying doctors won’t do anything that is not backed by an RCT, which is simply not true. These doctors had information that was sufficient to do a Bayesian analysis, and they let the patient use that information to make a personal decision based on risk estimates. That is exactly the kind of thing I have talked about in several posts, looking at NNT, NNH, risk/benefit ratios, asking what would happen if we didn’t treat, the pros and cons of screening tests, etc.

    In fact, this kind of reasoning is exactly why most of us are reluctant to jump on the bandwagon with untested treatments: we know that historically, the probability that any given new treatment will pan out is small. We figure this into our Bayesian analysis of prior probability. We may seem unduly pessimistic, because experience weighs more heavily than hope.

  66. Rogue Medic says:

    @bwmbagus – on 12 May 2010 at 1:00 pm

    and Alison, I didn’t say there was no research, only no full scale trials. There is 30 years of research. Use my website – ldnnow dot com or for pure science by the researchers, ldnscience dot org.

    Also – try reading

    After all of the criticism about Big Pharma, it turns out that you are Big LDN. I am shocked to find out that you are not in this to save money for others. You are in this to make money. I am shocked.

    Why is it that the loudest critics of Big Pharma are Big Placebo?

  67. Rogue Medic says:

    @ bwmbagus – on 12 May 2010 at 5:12 pm

    I find it so hard to believe that scientists can overlook and ignore such stuff, but then again, it all seems quite far fetched, much like penicillin did when the original researcher tested it on himself to prove the point.

    A great story, but it is not true.

    Medical science gets caught up in protecting favourite theories, and to be honest, the standard of evoi9dence for many6 drugs is actually quite bad.

    I am a scientist so what I say is based on research.

    It is good that you do not get so caught up in your pet theory that you believe it is the answer to everything.

    It is good that you do not feel any need to have valid research to draw conclusions from.

    On the other hand, a scientist does require some valid research to draw conclusions. A scientist does change his/her mind when presented with evidence that incorrect conclusions have been drawn.

    You do not appear to be a scientist.

    You appear to be just promoting a product that you are selling with false claims.

  68. Wolfy says:

    I second that, RogueMedic.

    @bwmbagus

    1. Without jumping to conclusions about your illness given the knowledge that someone recommended mitoxantrone for it, what is your illness?

    2. “You see, medicine is about using your noddle as much as listening to drug reps.”

    I would argue that many of us don’t pay any attention to drug reps.

    @redplanet

    “I began ldn last summer for IBS.” Do you mean “irritable bowel syndrome” or “inflammatory bowel disease?”

  69. bwmbagus says:

    medic.
    I yhave physics degree and masters degree of science so I speak truth.
    Also, the penicillin story is true.
    Finally, if you can read, try reading this lot http://www.ldnnow.net/documents/ReferencesLDN.pdf
    It’s called science based evidence for LDN.
    This is the valid research I used to draw my own conclusions combined with my studies in biochem and microbiology in an attempt to control my MS.
    You really need to get out more

  70. bwmbagus says:

    regarding making money. I don’t make anything, in fact this work only costs me money and i have to live on benefits.
    There is no money in LDN, and i would never consider it for a career move either.
    I will never profit from LDN except in the sense of getting the MS under control.
    One day LDN will get the research it needs and we will know the truth. Right now, none of us know the truth so wolfy and medic, your certainty about your comments has no scientific basis, whereas my position has ratyher a lot of science behind it – see the link.

  71. Wolfy says:

    bwmbagus:

    1. you’re logic is a little flawed here: a person with a degree, or multiple degrees, does not (in any way) mean that he/she “speaks the truth.” there are plenty of people out there with “degrees” who are entirely full of shit.

    2. its a bummer that you have MS, its also a bummer that it is severe enough for someone to recommend mitoxantrone. but, as i’m sure you know, ms may relapse, remit, cause other odd and unexplainable clinical symptoms, etc and use LDN may do as much clinically as observation. maybe naltrexone has some immunomodulatory properties, i’m not up on this literature. what i can tell you is that it doesn’t, as many of its proponents claim, cure cancer.

    3. i didn’t make any scientific claims, neither did RogueMedic. we’re just skeptics and cast doubt on your claims.

  72. Jayne Crocker says:

    Firstly I couldn’t agree more with Margaret 87 – this person talks logic. Whilst there’s some points in this article I agree with, I’m really wondering whether this person is a Dr or a medic or a ………

    Well done Margaret and bwmbagus whoever you are!

  73. Harriet Hall says:

    Jayne Crocker said

    “Whilst there’s some points in this article I agree with, I’m really wondering whether this person is a Dr or a medic or a ……”

    Do you really not know who Steven Novella is? It would have been so easy for you to click on his name and find out. Or to google his name or check Wikipedia. The fact that you didn’t bother says a lot about you.
    Who are you? Are you “a doctor or a medic or a…”

    Anyway, it doesn’t matter who the writer is: what matters is what is written. If you don’t agree with some points, you are welcome to explain why and to support your opinion with evidence. Otherwise, your opinions mean nothing.

  74. Wolfy says:

    Jayne:

    A brief biography of Novella is on the SBM website; you don’t even need to open a new browser window to learn a little about him.

    Although, I suspect that your “a dr or a medic or a. . .” comment was thick with sarcasm.

  75. Rogue Medic says:

    @bwmbagus – on 16 May 2010 at 10:03 am

    medic.
    I yhave physics degree and masters degree of science so I speak truth.

    Wow, that is convincing, but I only respond to the 3rd degree. You need one more to convince me.

    Also, the penicillin story is true.

    That was even more persuasive.

    I can’t figure out why I am so suspicious of someone who appeals to the authority of multiple science degrees, even though there is no understanding of the scientific method.

    Finally, if you can read, try reading this lot http://www.ldnnow.net/documents/ReferencesLDN.pdf
    It’s called science based evidence for LDN.

    Dr. Novella covered the relevant science in the original article. You continue to misunderstand.

    This is the valid research I used to draw my own conclusions combined with my studies in biochem and microbiology in an attempt to control my MS.

    That is amusing.

    You really need to get out more

    How would you know how much I get out?

    Oh, yeah! You are psychic!

    You certainly are not logical.

  76. Rogue Medic says:

    @ Jayne Crocker – on 16 May 2010 at 12:32 pm

    Firstly I couldn’t agree more with Margaret 87 – this person talks logic. Whilst there’s some points in this article I agree with, I’m really wondering whether this person is a Dr or a medic or a ………

    This person talks logic?

    Then you start the next sentence with a Whilst?

    You began all of that with a Firstly, but never even seem to have gotten to any point.

    Dr. Novella’s identity appears to be a big mystery to you, but you could have done a Google search and found that even his critics do not claim that he is not a doctor. You seem to have decided that it is better to pretend that there is some doubt about Dr. Novella’s qualifications to write this article.

    Is it because you do not know how to use Google?

    Is it because you are familiar with Dr. Novella, but wish to fraudulently create the appearance of something wrong?

    What is the purpose of your demonstration of ignorance?

    I am just a paramedic. I do not have any of my credentials posted on the internet, but if you read the comments on my blog, or read what other bloggers write about me on their blogs, you will see that nobody questions whether I am a medic.

    Well done Margaret and bwmbagus whoever you are!

    Yes, much better to listen to anonymous drug pushers, than to people explaining science.

    All of you should read Medicine’s Beautiful Idea on this site. It explains a lot of the concepts of science that you seem to think can be replaced with magic.

    A great quote from that article –

    A drug’s effects, even if they are moderately large, can almost never be reliably figured out on the basis of personal experience.

    All of the criticism of Dr. Novella’s article seem to be focused on claiming large benefits from LDN, but based on personal experience. That is not science.

    You can rant and rave about how the people who criticize you are not being scientific, but you base these accusations on irrational and unscientific concepts. Yelling, My science is better than your science! does not make it so.

    You need to provide exactly what Dr. Novella shows is lacking from the current research – significant evidence.

    Meanwhile, the LDN community are turning a promising if preliminary treatment into essentially what is snake oil by promoting it for an implausibly long and contradictory list of indications. They are making the classic mistake of extrapolating prematurely from preliminary evidence, and relying heavily on anecdotes. Anecdotes are just another form of preliminary evidence (a particularly weak form at that) that should only be used to indicate promising new research, but not as a basis for clinical claims.

    That paragraph describes the pro-LDN comments accurately. Maybe Dr. Novella is psychic. ;-)

  77. BillyJoe says:

    My sister has MS, and she has had it for nearly ten years. She is no different now than she was before the diagnosis. I don’t know if this is because she has a very mild form of MS or if this is the response to her medical treatment. But she has never taken naltrexone.

    The point here is that personal experience is extremely unreliable. If she had have taken naltrexone all these years maybe she would now be a staunch advocate for that drug. As it is she attributes her success to the medical treatment, but she is not even justified in making that conclusion. She may just have a mild form of MS.

  78. bwmbagus says:

    @rogue medic
    I tried, but you cannot teach the unteachable.
    BillyJoe, I was diagnosed only 5 years ago and 2 years ago I could no lo9nhger walk or get out of the front door and reached the secondary progressive stage. I wasw getting worse week by week. I have not deteriorated since starting LDN.
    I have a very aggressive form of MS and in spite of LDN i have got a little bit worse in 18 months, but i was getting t5hat much worse every week before, so something hasa changed.
    But if you all actually read the references I givwe, you might realise that endorphins are terribvly important to mainteneance of a functioning immune response – jus for starters.
    Maybe LDN is just a placebo, but maybe it isn’t.
    My argument is this, someone, please do the research!
    Then we will know for sure.
    but rogue medic, strop being a pratt and just arguing for the sake of it and read somethging relevant before you open your gob any more, please! You are discrediting yourself constantly by your ignorance of what I speak.

  79. bwmbagus says:

    One other thing, my choice to use LDN is not scientific, it is based on my own choice and research.
    Being a science gives me no credibility but it just makes it easier to do the research and understand what I read.
    Science is rigorous and based on observsations and stratistical analyses of certainity of hypotheses. Every choice of prescription is to a greater or lesser degree based on science or based on judgement.
    That is all we have as humans, so, Rogue Medic, I hope you never need your ‘judgement’ beause you’ll need to find it first from whast I have seen. No offense, but you do like to play safe don’t you.

  80. Rogue Medic says:

    @ bwmbagus – on 16 May 2010 at 6:52 pm

    @rogue medic
    I tried, but you cannot teach the unteachable.

    It is better to not understand something true,
    than to understand something false.
    Neils Bohr

    Why would I want to learn something false (not based on science)?

    I do not see any evidence that Dr. Novella left out any of the relevant research.

    but rogue medic, strop being a pratt and just arguing for the sake of it and read somethging relevant before you open your gob any more, please! You are discrediting yourself constantly by your ignorance of what I speak.

    Considering the source, that is high praise. Thank you.

  81. Rogue Medic says:

    Oops. I goofed on the HTML, but it should be easy to figure out which are my statements and which are by bwmbagus.

  82. bwmbagus says:

    Also, many of the drugs I am prescribed by GP’s or that I am offered have NOT been trialled for use with MS, so have no scientific justification for their use, ie Mitoxantrone for progressive MS and gabapentin and quite a few others besides.
    Same is true all over modern medecine.
    Where does that leave our so called evidence based use of drugs?

  83. bwmbagus says:

    @rogue medic
    You are selective to the extreme. You have zero science on your side of this argument. At least I have science and the need to understand it.
    Why do you ignore the fact that I am not advocating LDN, I am advocating research into LDN.
    I don’t need convincing to try it.
    You are also ignoring over 100 peer reviewed papers that I have pointed you at too.
    Shame really, because I did once think you might have something to say, but you are mre interested in the conspiracy part of Novellas work, and not in the rest which is in fact quite correct.
    There is nothing worse that poor science and misuse of science, and that also applies to quite a lot of research and quite a lot of uyse of untsted drugs, something that is widespread and highly selective it seems. Muich like you approach which is more like a journo than a scientist to be honest.
    But I actually agrree with Novella, except for one thing, I think that LDN has a future and I do believe that biotherapy is in the future of 21st century medecine.

  84. Harriet Hall says:

    bwmbagus said
    “I am advocating research into LDN.”

    So is Dr. Novella.

  85. Margaret87 says:

    # Rogue Medic on 16 May 2010 at 4:24 pm wrote:-

    “Well done Margaret …… whoever you are!
    Yes, much better to listen to anonymous drug pushers,..”

    Rogue Medic – here are definitions of what “drug pusher” means:-
    “Definitions of Drug pusher on the Web:
    * The illegal drug trade is a global black market consisting of the cultivation, manufacture, distribution and sale of illegal controlled drugs. Most jurisdictions prohibit trade, except under license, of many types of drugs by drug control laws. …
    en.wikipedia.org/wiki/Drug_pusher
    * A person who encourages people to take up illegal drugs, and then supplies that need for a price
    en.wiktionary.org/wiki/drug_pusher”

    Would you tell us what I’ve written and/or what evidence you have that would justify your description of me as a “drug pusher”.

  86. Rogue Medic says:

    @ bwmbagus – on 16 May 2010 at 7:41 pm

    @rogue medic
    You are selective to the extreme. You have zero science on your side of this argument. At least I have science and the need to understand it.

    Gosh, if you write it enough times, maybe it will become true.

    Why do you ignore the fact that I am not advocating LDN, I am advocating research into LDN.

    I don’t need convincing to try it.

    You don’t need convincing to try research?

    I have repeatedly stated repeatedly that we should pay attention to good research.

    You have continually misrepresented what I have written.

    Is research the it you refer to?

  87. Rogue Medic says:

    @ Margaret87 – on 17 May 2010 at 3:05 am

    Would you tell us what I’ve written and/or what evidence you have that would justify your description of me as a “drug pusher”.

    I apologize. I had thought the definition of drug pusher was a bit broader than that. My mistake.

    I amend my statement. I should have stated that you and bwmbagus are anonymous drug promoters.

  88. Rogue Medic says:

    @ Harriet Hall – on 16 May 2010 at 7:57 pm

    bwmbagus said
    “I am advocating research into LDN.”

    So is Dr. Novella.

    There is a difference.

    Dr. Novella is consistent in stating that LDN needs to be researched.

    bwmbagus follows up the statements that LDN should be researched with statements that essentially state that we should ignore the lack of evidence to support LDN and use it any way.

    We know we are saving the UK NHS about 100 million pounds a year by using LDN.

    A statement that Alison Cummins demonstrated is based on a lot of wishful thinking. All of the arguments to just take LDN now are based on wishful thinking. They are not based on research.

    I am a scientist so what I say is based on research.

    bwmbagus has that backwards. A scientist bases statements on well done research. A scientist does not claim that because I claim to be a scientist, so what I say is based on research.

    medic.
    I yhave physics degree and masters degree of science so I speak truth.

    It is good that nobody else with a degree in physics and an MS would ever disagree with you.

    Please tell us about the magical property in this degree combination that causes you to speak the truth, while the rest of us lowly mortals must rely on evidence.

    I didn’t say there was no research, only no full scale trials.

    All research is created equal?

    It would be rude to suggest that we rely on research that shows actual improved outcomes?

    It is so much easier to show improvements in studies that are only appropriately used for the creation of hypotheses. To attribute more value to such preliminary research is to completely misrepresent the preliminary research.

    This is dishonest.

    This is not advocating research.

    This is pretending that surrogate endpoint studies are as valid as well done research that is designed to show if there is an improvement in outcomes.

    And why would anyone care if there really is an improvement in outcomes, since the only people interested in improved outcomes are those who wish to be honest with patients?

    Research is being done. If well done research does show improved outcomes, then I will write about the benefits of LDN.

    Until the research supports such a statement, I will continue to point out that it is dishonest to pretend that there is research that supports the use of LDN.

  89. ps says:

    Jayne Crocker said:

    Firstly I couldn’t agree more with Margaret 87 – this person talks logic. Whilst there’s some points in this article I agree with, I’m really wondering whether this person is a Dr or a medic or a ………

    Well done Margaret and bwmbagus whoever you are!

    Doctor Hall Said:

    Do you really not know who Steven Novella is? It would have been so easy for you to click on his name and find out.

    If Jayne is unaware that bwmbagus is her partner and co-founder of LDN Now, Andrew Barnett, is it not surprising that Jayne would also be unable to determine who Dr Novella is? I’ll leave Margaret87 et al as an exercise to the reader, but it’s worth noting that their group’s practice of Astroturfing, and ignoring all dissenting information regarding their claims, has not exactly made them popular in other places.

    Déjà vu, anyone? anyone?

  90. BillyJoe says:

    bwmbagus,

    The latest article by David Gorski might be of interest to you in this context:

    http://www.sciencebasedmedicine.org/?p=5166

  91. bwmbagus says:

    @rogue medic NO
    I do NOT advocate use of LDN without the research!!!!!!!!!!!
    You have difficulty understanding the english language, but you simply insist on being contrary for the sake of it. You confuse my personal choices with my opinions to science completely.
    You also refuse to actually read the research provided which makes you ignorant too. The science is not definitive but it is persuasive enough to warrant further research.
    Also, the saving. in the UK alone, 7000 people saving, on average, 15000 a year is equalt to 105million. However the research (estimated) could be done for under 10 million so whatever calculations you believe we have paid for the reserch altready so once again you are ignorant.
    Sorry to be so rude about you but you do invite it and I am an intolerant oaf with a nasty disease who does not have time for fools.
    We do not even disagree about the article here either, so you see, you just argue because you have nothing beter to do.
    If you were not too lazy to ACTUALLY LOOK AT THE EVIDENCE I HAVE PROVIDED TWICE IN THIS THREAD, THEN you would realise there is a lot of evidence for LDN and NONE to say otherwise. The fact that there is NONE to discredit LDN is remarkable in itself.
    Also, when I once stopped LDN for just 8 days, my MS came back with a vengeance – just an anecdote but an interesting one, shared by many using LDN.
    If you cannot believe what is before your eyes, then you really don’t want to get sick, because you won’t survive.
    Also, why was I offered drugs that are not trialled for MS by my neurologist – Drugs that are known to destroy the liver, the heart and damage the brain?

    So Rogue Medic, your laziness is your folly, try reading or get a life.
    You see, LDN is being used whether you like it or not, as is Mitoxantrone (Not trialled) and Tysabri (trialled but killing people) and many others.
    There are a lot of people who will advocate LDN without real science, but I am not one of them. However, I do have what is kown as an OPINION on this, and if my OPINION carries weight with some people then that is because others concurr when they read the evidence available.
    You cannot seem to read more than 50 words so you will never look at what evidence does exist and this argument will never end, with you going round in ever tightening circles trying to justify nothing. You have nothing to say except that Novella has a point and I agree with you.
    What you seem to dislike is my use of LDN, well, for the record, I believe I would still be walking now if I had found LDN just 3 years earlier, so I just want LDN to be available to all if that proves true.
    I am glad to hear you are no so foolish though that you will support the use of LDN when the science is done, but then, there will be no point supporting it. I don’t support LDN though, I support the idea that when patients demand reasearch, and when those patients are saving the NHS money, then it should be possible to get the research under way even if the academics don’t agree, you see, patients are not ignorant and should have choices about their future, and not be forced to take dangerous drugs if they don’t want to.
    Just out of interest mr Medic, do you hae any qualifications in science? You see, your disinterest in the research I have offered tells me you aint curious about anything, just contrary.

  92. ps – thanks for the info. I just love it when folks play “let’s pretend” with their testimonials for drugs. Ain’t the internet grand!
    Here’s the post where Jayne Crocker says that Bwmbagus is Barnett and they are petitioning the government together.

    http://www.politics.ie/health-social-affairs/99890-low-dose-naltrexone-can-save-lives-country-millions-4.html#post2040631

    “Jayne Crocker
    Junior Member

    Join Date: Sep 2009
    Posts: 13
    Default
    Have you watched the Dr Chris video? If so, you will realise that John Donnelly is a separate person to Jayne Crocker. Bwmbagus is Andrew Barnett so I’m pleased to say folks that we are three separate people. Both myself and bwmbagus are petitioning the Govt and John Donnelly has taken the time to put together the LDN Database to show how LDN is working effectively.

    Does anyone have a problem with this?

    Wishing you the best of health.

    Jayne Crocker”

    I don’t get it. If everyone is above board, why hide their connections? Folks if you want to be taken seriously, don’t play these kind of games.

  93. bwmbagus says:

    well, there are always plenty of people who want to be negative.
    One day the LDN issue wilol get resolved and they will go quiet and we will know the truth – regardless of which way the axe eventually falls.
    That is what I care about, proving or disproving LDN, not arguing when neither position can be proven conclusively.
    We have learned a lot in the last year and a half, particularly that there is a lot of hype going on about LDN which I did contribute to once but not now. Then I was trying to support the efforts of others, whereas now, I just want the research for a simple and proven safe at trials drug,.
    Not a lot to ask really, especially when everything points to further research – (only for those who can be bothered to read).
    We are not an organisation as such, we are a very small group of individualks and the biggest reason we do this is because it has helped us and many friends we have met.
    So, yes we are campaigning, but not for LDN now. We are campaigning for the rights of patients to influence the course of research.
    I am Andrew Barnett M.Sc, I have nothing to hide, as obvious by our website. The name bwmbagus is old now and well used, and most people know the connection. I don’t know why Jayne chose to act as if we were unconnected, but we all make mistakes – don’t we mr medic!!”
    But, bottom line, we are not a corporation or a charity or even a real organisation. I pay for the website out of my social security – which I could do with keeping for my care – so lets just call that committment.
    But, we have been out on the streets telling people about our work and doing real grass roots work, not just internet stuff, and that is damn hard on a mobility scooter!
    We have the support of many MP’s, and some very famous names – not for public exposure – and we will resolve this, but, as long as you respect that I am suffering from SPMS and make some allowances for my ways, whicch are affected by the brain damage, then let the debate go on.
    To answer Novella, yres, science is often misused to justify much, and often by drug companies (see the Tysabri story) but that just means we need to get on with the research. However, when a drug is actually safe, then there is no harm in people experimenting (LDN) but the research still needs doing.

  94. bwmbagus says:

    michele, thanks for that, very interesting. That drug has a lot of evidence to prove it innefffective.
    I cannot find any such evidence to disprove LDN though, if you can, please let me know.

  95. bwmbagus – Are talking to me? I’m not sure what drug you are talking about as I didn’t recommend one. I was recommending an honest and ethical approach to advocating for research in a potential treatment. Has honest and ethical communication been proven ineffective?

    I came to this discussion because this sounded like a therapy that could have some potential. It sounded like more research would be a good thing. That was the message I got from Dr. N’s article and I found it intriguing.

    The tactics you are using to advocate for this treatment (research?, then why do you disagree with Dr. N.?) are giving me a really bad vibe. If this drug is effective, why does it need deceptive communications to advocate for it?

    Obviously, you will post as you wish. But as someone interested in critical thinking, I wanted to let you know how much this “astroturfing” undermines your credibility for me.

    http://www.sciencebasedmedicine.org/?p=4997&cpage=1#comment-51509

  96. qetzal says:

    bwmbagus on 16 May 2010 at 7:32 pm:

    Also, many of the drugs I am prescribed by GP’s or that I am offered have NOT been trialled for use with MS, so have no scientific justification for their use, ie Mitoxantrone for progressive MS and gabapentin and quite a few others besides.

    and bwmbaguson 17 May 2010 at 9:54 am:

    You see, LDN is being used whether you like it or not, as is Mitoxantrone (Not trialled) and Tysabri (trialled but killing people) and many others.

    Why do you keep claiming that mitoxantrone hasn’t been clinically tested for use in MS? I find at least 12 randomized controlled clinical trials listed on PubMed, plus many more pilot trials. (This contrasts to a single uncontrolled safety/tolerability study of naltrexone in MS.)

    It’s hard to take you seriously as someone who’s truly interested in the science when you state such obvious untruths.

  97. ps says:

    Andrew / bwmbagus, the last paragraph of Dr Novella’s post contained the following:

    Ironically, LDN promoters may in fact harm research into LDN by giving it a bad name. Researchers may be reluctant to hitch their careers, or funding agencies commit resources, to a treatment that has a dubious reputation. If the research is promising it will still get done, but if anything it is likely to be slowed by the efforts of the LDN promoters.

    Jayne’s first contribution was a cut and post from a blog entry. It wasn’t a response to Steven Novella’s entry, it was simply a scaremongering political piece that was followed by posts by yourself, John, Margaret and others. When I look around, I see similar posts by the same people in different places all without disclosure of your links to each other. You, for example, reply to Jayne’s posts without disclosing your connection or, even, that you are mentioned in the article.. I know, it was a mistake, just like all the other times, right?

    Look around, Andrew, multiply this all in the same way you come up with your figures for LDN usage, and you have Astroturf. Sunshine, you’ve been nicked.

    Like Michelle, I had an interest in this area but I am way, way, way, turned off by it now and wouldn’t touch it with a barge-pole.

    The errors and omissions listed in Dr Novella’s article not only remain unanswered but are repeated. For example, you keep hyping the “science” yet your clinical trials web page misses off important caveats from the UCSF trial such as

    … The results do not support use of LDN as an alternate to proven MS treatments such as interferon beta, glatiramer acetate and natalizumab. Indeed, there is a misconception among some MS patients that LDN is incompatible with interferon usage and the present study did not find evidence of such antagonism. In conclusion, in this exploratory, single center study, 8 weeks of treatment LDN was associated with symptomatic benefit with respect to mental health, pain and perceived cognitive deficits in MS. Confirmation of these findings in a multi-center trial will be necessary to make definite conclusions about the possible symptomatic benefit of LDN in MS. A longer duration of treatment is necessary to determine whether LDN has any benefit with respect to physical outcome measures…

    You claim that LDN treatment is being suppressed because of financial interests yet hang your hat on Jill Smith’s research, even though she holds a patent and thus a potential financial interest in LDN. Somehow you don’t see that as a double standard, though?

    Your MS got worse when you stopped LDN but didn’t I read that after some of these LDN “trials” the effects continued? Which one of those anecdotes do you want to run with today, or shall we just let them cancel each other out and spell them placebo? The LDN forums have excuses why LDN doesn’t work such as needing detoxification , special diets and everything but the possibility that it’s only making you feel better. That’s important, but it’s also important to be upfront about the difference.

    These discussions, cherry picked quotes, and discounted negative information, read like the bog-standard alt-med “Science will catch up with us” special pleading.

    To continue, the links from your website to Doctors who prescribe LDN> lead to practitioners of Acupuncture, Chelation Therapy, Chiropractic, Detoxification, Homeopathy, Hyperbaric Oxygen Therapy, Infrared Light Therapy, Naturopathy, Reflexology, and a whole bunch of woo. What was that about LDN being supported by science and where’s that list of science-based practitioners?

    Reading the LDN forums, an oft-quoted individual is Jaquelyn McCandless. Again, it’s not exactly science-based medicine is it?

    Finally, like so many following this discussion, I’m not actually your enemy. Actually, I wish you well. Frankly, I agree with the underlying message from Doctor Novella and so many others here: It’s your tactics and your associations with woo that are you own worst enemy.

  98. bwmbagus says:

    @michele – i don’t disagree with this article, no idea why you think i do either.

  99. bwmbagus says:

    @ps, hey, i never claimed research is being suporessed, that is plain conspiracy theory.
    Naltrexone was only ever tria;l;ed for anything because Nixon forced Dupont to do the research, and that is when they also found that in low dose it boosts endorphins.
    Acupuncture, Chelation Therapy, Chiropractic, Detoxification, Homeopathy, Hyperbaric Oxygen Therapy, Infrared Light Therapy, Naturopathy, Reflexology, are a waste of time in my opinion. I want something with proven biochemical actiuon. The effect of LDN to stimulate endorphins is prven.
    What is questioned is the effects of endorphins, except that research into met-5-enkephain is in fact progressing in the treatment of cancer very well.
    What amazes me here is ther vitriol for someone who only wants to have a life better than one confined to a wheelchair and I have now got that, so really, I don’t give a damn.
    I have not hyped any science either, merely asked you all to look nat it and make your own conclusions, wow, you really do imagine a lot on my part.
    Just help me get the research for f’#@@ks sake and lets get to a civilised place of proof.
    If you wish to discredit LDN though, you’ll need some science to back you up – and that doesn’t exist.
    God, this is hard work. None of us want untried rugs.
    By the way, I was told by my neuro that Mitox was not triall;ed for MS, so will investigate. As far as I know, Mike Biggold did no trials, he just got it’s use for MS authorised on the basis of it’s use for cancer.

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