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

  1. bwmbagus says:

    Mitoxantrone.
    The biggest trial was with 194 people. LDN has had several trials of the size of many Mitox trials, not yet 194, but 194 is not conclusive, plus Mitox causes heart valve failure, brain damage and liver damage – no thanx

  2. bwmbagus says:

    oh and one of 270 people. All small.
    We are back in the frame of half baked research – interesting, but thanx for letting me know about this

  3. bwmbagus says:

    regarding astroturfing, the hostility here to LDN is more like astroturfin g than anything I have said and much of the vitriol is based on imaginings and assumptions of what I have to say to, it really is quite amusing sometimes.
    So et me make this clear now.
    I use LDN and am happy to encouirqage others because it is safe.
    I campaign for research on the basis that a large number of patients want the research, as counted by the supplying pharmacists.
    LDN costs me under a dollar a day, name another drug for MS that is so cheap please!
    There is no way to pay for research with a dollar a day drug so it is entirely reasonable for the pharmaceutical industry to ignore it.
    The effects of endorphins is research in the last 10 years mostly, so no suprises that most researchers have not yet caught on there then.
    If patients want research, I assert that they should be able to get it done, after all, they are the third part of this equation and patients have rights too with regard to the drugs being used. So even if they want something facile researched, we should consider it, as long as the cost effectiveness and risk ratio is favourable.
    So, that is my position and response to this article. I agree with this article except where these statements oppose it – if they do at all that is which I don’t believe they do.

  4. bwmbagus says:

    Placebo effect.
    Can anyone tell me, does the placebo effect still work if the person does not believe that the drug will work.
    When I started LDN, and for some time after starting, my scientific mind refused to believe it would work.
    I took it to stop my girlfroiend from nagging me and to avoid disrespecting her father who found it. It was safe according to the doctor, so I saw no harm in humouring them.
    What happened over the hnext few months – and since – has changed my life completely, so I have become favourable, though I still worry that it might be about giving up beta interferon too a bit, even though I had stopped that 2 months beforte starting on LDN.
    So, does placebo effect work in the cynical?
    My understanding of placebo effect is that it helps restore the state of mind conducive to a good cytokine balance which can eliminate chronic cytokine imbalances. (Faith, Murgo and Good – as I understand it).

    However, I might still be fooling myself with the mood enhancing effects of increased endorphin levels. I just want to know if I am fooling myself or if this is real.

    However, I have got my mind back on LDN, I no longer feel sick, I no longer suffer cytokine induced sickness bahaviour and my mobility is much greater than it ever was in the final year and a half of using beta interferon.

    So, once again, do I need to expect a positive result to get one woith placebo effect? Can young children experience placebo effect? Can placebo effect be negated by a negative expectation?

    I was frankly as hostile as the most hostile people here to LDN for months, but when you aree trying to impress a woman, we men will go along with anything.

    My investigation suggest that LDN is effective in more than half cases of use, and probably more effective than any of the standard drugs in use, which seem to get used with the promise of 30% or so reductions in relapse rate. I used to get 2 to 3 relapses a year. In the last 18 months, I have had no relapses and only 1 episode of progression during a period of UTI. This has resulted in a slight increase in neuropathic sensations and hence slightly increased spasm and weakness.

    My SF54 score shows significant levels of improvement too, but is simply stable for the last year.

    I would like to see a 1000 sample study of LDN using quality of life measures, endorphin analyses particularly th1/th2 balance measures, IL2, IL6, TNF and IFNalpha analyses, double blinded placebo controlled randomised crossover trial over 6 months to 2 years. This would cost under 10 million pounds in the UK so is well withion what the 7000 of us using LDN must be saving the NHS right now every year.
    The 7000 is probably a few hundred high, but is a reasonably well counted estimate of use from the pharmacists and doctors supplying it.
    The argument that immunosupressants are good enough though doesn’t wash with many of us, who would rather try a safe drug first, and the others which have serious side effect risks later if the LDN doesn’t help.
    First, do no harm!
    There is nothing wrong with this approach as far as I can see.
    Dr Novella agrees that the research should be done if the preliminary research warrants it. Well, we are saying that when the patients start using a drug so heavily, then the researchers should be obliged to do the research, after all, I went to them with a few million quid, they would do it in a flash!
    The only thing that ever stands in the way of a research application is the funding.
    So, there is approaching 100,000 people worldwide and all the doctors writing the prescriptions who need an answer to this. Surely that should be enough!
    Currently, it is obvious that the evidence for LDN being worthy is limited, but then again, it hasn’t had the interest to ansewer that.
    Agreed. most of these translational projects prove ineffective, but that is no reason not to find out, and no reason to pour cold water without real evidence against the drug in queswtion.
    Where is the evidence that endorphins are not useful?
    I haven’t seen it, but then again I did miss the Mitox trials so come on all you naysayers, find me the science that proves LDN is a myth, and don’t just give me speculative opinions.

    It was never a placebo with me and I am still not sure, but it is safe to use, so I have nothing to lose by trying it. The payback though has been very good, so I must advocate taking sensible risks when it comes to incurable systemic diseases.

  5. KB says:

    “Can anyone tell me, does the placebo effect still work if the person does not believe that the drug will work.”

    Yes. You were still told that the medicine could work. You completed the act of taking pills. That’s all it takes for the placebo effect to work, not any sort of conviction beforehand. The placebo effect is not some phenomena that happens only to people who convince themselves of something. Your disease is also capable of remission which may have coincided with taking the drug serendipitously. There are plenty of skeptical people who have been convinced some treatments work by using them themselves, even though science proved them wrong later.

    It’s possible the drug works, but it’s not impossible that it’s the placebo effect.

  6. Rogue Medic says:

    @ bwmbagus – on 17 May 2010 at 9:54 am,

    What you seem to dislike is my use of LDN

    No. What I dislike is the way you are trying to persuade others to take a drug that has not been adequately studied.

    You keep claiming otherwise then you go on to state that the evidence you have, which is just preliminary evidence, is irrefutable.

    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.

    Dr. Novella has done a nice job of pointing out the problems with making claims based on your preliminary research.

  7. Rogue Medic says:

    @ bwmbagus – on 17 May 2010 at 11:43 am

    well, there are always plenty of people who want to be negative.

    Well, we always have you to spread the positive message of science. ;-)

    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.

    I can only image how rational you were when you were hyping LDN.

    However, when a drug is actually safe, then there is no harm in people experimenting (LDN) but the research still needs doing.

    Experimenting outside of controlled experiments can be harmful. If there is a treatment that is not a placebo, the person may avoid a real treatment in favor of something that is just a placebo (LDN).

    This statement also contradicts your repeated claims that you are not encouraging people to use LDN, that you are just encouraging research.

    I do not have any literacy problem. I have stated that I think the research should be done. I stated this in my first comment. I have not changed my mind at any point. I have not made any contrary statement at any point. That does not stop bmwbagus from pretending otherwise. Why do you need to lie, bmwbagus?

  8. Rogue Medic says:

    @ bwmbagus – on 17 May 2010 at 5:51 pm

    I use LDN and am happy to encouirqage others because it is safe.

    So much for just encouraging research.

    LDN costs me under a dollar a day, name another drug for MS that is so cheap please!

    Placebo – the other LDN.

    Just as cheap.

    Just as effective.

    There is no way to pay for research with a dollar a day drug so it is entirely reasonable for the pharmaceutical industry to ignore it.

    The government pays billions of dollars for research that the drug companies choose not to do.

    The ongoing research on LDN makes it quite clear that you are wrong. LDN continues to be studied. Maybe someday there will be some outcomes research worth paying attention to.

    The actions of the LDN hype squad are not the kind of behavior associated with valid research. This behavior is what we expect from snake oil salespeople.

    I agree with this article except where these statements oppose it – if they do at all that is which I don’t believe they do.

    I agree – except when I disagree – assuming I do disagree – which I don’t think I do – so I don’t!!!!!11!!!

    Brilliant! I wish I had come up with that.

  9. Margaret87 says:

    ps wrote on 17 May 2010 at 7:57 am

    “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.”

    roguemedic wrote on 17 May 2010 at 6:26 am
    @ Margaret87 – on 17 May 2010 at 3:05 am
    “…………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.”

    In my posts I’ve mentioned in passing some personal experience on LDN, and that I want LDN accepted by health authorities in the UK.

    Above all I’ve discussed the article.

    In response I’m told I belong to an “Astroturfing” group and that I’m a “drug promoter” (whatever that is but it doesn’t sound nice).

    Rather than label me with silly personal slurs, wouldn’t it be more useful to address my assessment of the article.

  10. Rogue Medic says:

    @ bwmbagusc – on 17 May 2010 at 7:26 pm

    Placebo effect.
    Can anyone tell me, does the placebo effect still work if the person does not believe that the drug will work.

    It seems that it does. One theory is that the subconscious may be responding to the thought of a treatment, even though the conscious mind does not believe in the treatment.

    I went to them with a few million quid, they would do it in a flash!

    If only it were that easy.

    The only thing that ever stands in the way of a research application is the funding.

    Try suggesting that to a researcher who has nothing to do with any of us, since you wouldn’t believe any of us. You might want to sit down, while you listen to the answer.

    Where is the evidence that endorphins are not useful?

    Nobody stated that they are not. The problem is that something that works at altering a surrogate endpoint may not be effective at improving outcomes. The human body is more complex than a simple machine that will respond to, I’ll just turn up the endorphins.

    find me the science that proves LDN is a myth

    Research is designed to find faults with the hypothesis being tested. In well controlled trials, LDN is tested against placebo to see if there is a significant difference in real outcomes. If LDN can show efficacy, then it is consered to be a real drug. Until then, it might as well be a myth.

  11. Rogue Medic says:

    @ Margaret87 – on 18 May 2010 at 3:11 am

    Rather than label me with silly personal slurs, wouldn’t it be more useful to address my assessment of the article.

    OK.

    He (Dr. Novella) 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.

    OK. You can alter endorphin and enkephalin levels.

    That is great if you like to live in a lab measuring endorphin and enkephalin levels.

    Patients live in the real world.

    In the real world, the only thing that matters is whether you can make a difference in outcome that is better than placebo.

    Where is your evidence?

    “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.

    Prove it.

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

    Then you must have clear evidence that it works. Please provide well done studies that show improved outcomes compared to placebo.

    If you can’t do this, then you should feel happy that your astroturfing has only resulted in silliness, you silly snake oil salesperson.

  12. bwmbagus says:

    OK, I conced, LDN is just a placebo.
    Time to book myself into Dignitas then because I am going to end up quadriplegic on this stuff. At least you have all coinvinced me this is pointless.
    You see, to me, the only alternative is to take my life before I am too sick to be able to.
    Making the problem worse with the drugs on offer is not an option for me.
    Well done all of you, I have wondered if LDN is a joke and now I believe you.

  13. bwmbagus says:

    aoh an medic, I do hope you have to face this issue yourself one day, because your attitude towards the sick is sick.

  14. bwmbagus says:

    please don’t take that the wrong way mr medic, it’s a trading places idea. You see, fiopr us, it is often the case that life is not the best option. I have taken the high tech drugs and they made me sick, depressed and suicidal. They also made me vulnerable to any disease going around.
    Mitox is the only thing offered to me now, and I prefer euthanasia. My live has been taken from me in almost every respect – no more running or swimming or cycling or even walking up the stairs. Even is a few endorphins only makes me feel better, then at least that is better. But, in fact, a life on chemo drugs for me is worse than the Dignitas option. I will not be a burden to society, so the reseasrchers had better come up with some more intelligent ways of conttrolling diseases like MS than the use of cytokines and invasive high tech drugs.
    Life is not as precious as you think mate – when the rubber meets the road.
    You need to understand that we have a RIGHT to choose! end of!

  15. Rogue Medic says:

    @ bwmbagus – on 18 May 2010 at 7:00 am

    aoh an medic, I do hope you have to face this issue yourself one day, because your attitude towards the sick is sick.

    My attitude toward the sick is to not tell them that something is a wonder drug that will fix everything, just because it has been shown to improve some laboratory values.

    Altered enkaphalin and altered endorphins are just laboratory measurements. You claim that you feel better. That is good, but it may be just placebo effect or the natural fluctuation of your illness.

    I hope that you do well, but that does not mean that I should encourage vulnerable people to take unproven medication on the expectation that their outcome will match something they read in an internet testimonial.

  16. bwmbagus says:

    wierd man, LDN is not a wonder drug. IT will probably prove useful to support other drugs.
    But you hasve avoided the point again – it is this. I would rather end this life than take the proven drugs on offer. What is your answer to that you pontificating bigoted dogmatic pillock!
    I respoind to the clinical evidence of my doctor as much as the science, but as I say, this may wellbe a placebo, but the only drug offered to me is very dangerous and not very effective. My doctor treats over 500 people with LDN and that is the evidence I work with.
    Even so, I am still not convinced but I do feel much better as my life ebbs away and that is a big deal for anyone.
    What would you do?
    However, I doubt you know the answer to that one because you haven’t had to choose to die yet.
    Vulnerable people look for alternatives and science is niot giving them reasonable ones. Science has got caught in the high tech high profit world of symptom relief drugs and invasive methods and even now believes it can do better than evolution. How stupid is that. We need a lot of basic science research to work out things like why my body was able to resist MS for over 20 years before it overcame my defenses.
    Medical research is stuck in an ever tightening trap where it believes that only screwing up the immune system more will hyelp. Well, if you have cancer, a little spell off chemo isn’t so bad, but if you have to take it long term, it is hell.
    You have no answer for this, because death frightens you because you do not understand what I am saying now. I have chosen to die when I reach a certain point of disability, and so have thousands of us in this position, so a drug that boosts endorphins and makes me feel good is a welcome relief.

    Encouraging people to take something that I have seen is safe in someone who has used it for 10 years who is a doctor, proves to me that faced with zero options, LDN is actually a good choice to try even in the absencer of definitive science and even if it is mostly placebo with added endorphins.
    As I said earlier – get a life – while you still can.

    Answer that if you can you ##@@@|%%%

  17. bwmbagus on treatments for MS:
    “Vulnerable people look for alternatives and science is niot giving them reasonable ones.”

    Is anything else giving them reasonable ones?

  18. bwmbagus says:

    Yes, LDN, until scientists get their finger out and do some basic research other than oin cytokines and symptom relief.
    Science has failed with MS so far. Maybe theres a clue there – like, looking in the wrong places. Maybe that’s why it all seems so complex.
    LDN is not a cure but nothing is. The drugs on offer give you the choice between being hit by a train at 90mph or at 50mph.
    Science is the right vehicle to solve these problems but it is evident from the very low success rates that it is heading in the wrong direction, driven by profits and easy answers it seems to me.
    Basic research may not be profitable, but it is essential to finding new approaches, and it is well publicised that basic research into the mechanisms of diseases like MS is lacking due to either lack of profit in businesses or the pressure of having to choose one research project and reject 50 because the funds are unavailable.
    The evidence of this is that most people with MS for example take nothing for their diseasse or are offered nothing. My neurologists even admits that they do not understand the disease. Well, then it’s time to do more research and stop relying on the EAE model which has more similarities to ADM (?? or whatever it is) than MS.
    One thing has been done which is useful – the discovery that the EBV is responsible for a lot of MS.
    But, in the absence of effective treatments, endorphins do help with quality of life, and when QOL is low, it matters.

  19. KB says:

    “OK, I conced, LDN is just a placebo.”

    At the risk of being infuriating, no one knows that either. The point we’re trying to make is: no one knows if LDN works. You don’t know, we don’t know, and doctors with anecdotal evidence don’t know. You took the drug, and you got better: totally happened. You took the drug, and it worked: unknown.

    “Vulnerable people” is right. If you have a terminal illness, even participating in a clinical trial could be just grasping at straws that might not help you, but you do it anyway on the off-chance it works. Which is why it’s evil that there are people out there selling treatments that have not been shown to work to the most vulnerable people in the population. It’s evil to offer a drug to someone with AIDS, cancer, AND autoimmune diseases. The peddlers take dying people and milk them for the last few dollars they can get. It’s not the patients that anyone thinks are at fault: it’s the charlatans who give them an offer they, well, can’t refuse. Because you can’t refuse someone who offers to cure you at the end of your life (not easily). But that doesn’t make it right for them to offer, take money, and laugh all the way to the bank while their patients are buried.

  20. bwmbagus says:

    So who exactly is selling LDN??? I’m not and I only have to pay for it because the NHS won’t in my case.
    What is evil is to try to deny my choice.
    The people who do charge for LDN make a very minimal profit for their efforts, it being under a dollar a day – or 50 pence in my world.
    If profit was the motive here, then I would not be able to get it at all.
    Sorry KB, your arguments is horribly flawed.
    I don’t even tell people not to take the standard drugs either. I simply respond to people who want to know more about LDN and I tell them that they must make up their own mind and speak to a doctor.
    I have never sold LDN, profited from it or even advised someone to take it actually. All I know for sure is that the endorphin boost makes me feel good, and hopefully it is also doing more but if it isn’t, there is no alternative for me so this is good enough until I reach a point where I’m ready to end this life.
    At least I don’t have to live with the horrific side effects of the chemo drugs which I did do for 3 and a half years.
    You people need to try to understand the thought processes of someone who is going to end up quadriplegic unless we do something about it and thet the only real cure is death.
    Why don’t you turn your attention on the really evil ones who peddle stem cells or stents for CCSVI, all very risky stuff. With LDN, there is no serious risk unless you are a very rare unlucky one.
    But, to recap, I am not peddling LDN, I am merely trying to get it researched and trying to change the way research is done because the research currently being done is a load of bollocks on the whole. (sorry, americans won’t understand bollocks, try testicles).
    It’s a sad indictment when death is the best option faced with what is offered eh innit!

  21. qetzal says:

    bwmbagus writes:

    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.

    Mitoxantrone.
    The biggest trial was with 194 people. LDN has had several trials of the size of many Mitox trials, not yet 194, but 194 is not conclusive, plus Mitox causes heart valve failure, brain damage and liver damage – no thanx.

    oh and one of 270 people. All small.
    We are back in the frame of half baked research – interesting, but thanx for letting me know about this

    For someone who calls himself a scientist, you exhibit a tremendous amount of bias. Someone tells you there is mitoxantrone was “not trialled” and you not only accepted that claim uncritically, you represented it as fact in this discussion. Funny that you’ve apparently done so much research into LDN (which you think is great), but you’re happy to just assume that another MS drug is unproven and bad based on no data at all.

    Also interesting to see you denigrating the size of the mitoxantrone studies in MS. I agree they weren’t large by the standards of, say, a statin, but they’re comparable to pivotal studies for other MS drugs (e.g. copaxone, interferon beta). More importantly, they were randomized, double-blind, and involved continuous treatment for up to 2 years. Moreover, these studies were reviewed by FDA and accepted as the basis for formal approval of mitoxantrone for use in MS. (You can see the label here (pdf). LDN studies in MS don’t even come close to meeting these standards.

    Now, I’m not about to argue that mitoxantrone is a great drug for MS, or that it doesn’t have serious possible side effects. Nor am I claiming that LDN is useless. I’m simply pointing out that you’re not acting like a scientist at all. You’re acting like an LDN zealot. A true believer who portrays LDN in the best possible light, and any other options in the worst possible light, regardless of the actual evidence.

    Of course, you may be quite content to behave that way. But you’re not helping your stated case of promoting more trials of LDN. Trials are conducted by true scientists, and true scientists are not impressed by proselytizing, zealotry, bias, or misrepresentation. Such behaviors only make it easy to dismiss anything you say as unreliable.

  22. bwmbagus says:

    qetzal, read my latest posts, you have asll convinced me that LDN is a placebo that boosts endorphins so my option is to take LDN for the endorphins until mmy MS gets bad, then the option for me is euthanasia. Try to keep up.
    We all make mistakes and being a scientist is about the letters after your name actually. Mine are M.Sc
    Mitox is too risky for the benefit for me. So I have refused it, leaving me no other options.
    So for me, there is LDN, and after LDN there is death.
    LDN certinly makes me feel good, that is good enough.
    But, the EAE model derived drugs are all toxic and very expensive, so, that makes the decision easy for me, you see, I won’t cling to life as if it is the only thing in life, I want to have quality of life and I have got it now. When I tried stropping the LDN, the QOL went away so I started again.
    So obviously the endorphions make me ferel good. I don’t believe you have to make these choices yoursef or you might understand me.

  23. bwmbagus says:

    One other thing, I have plaques all over my brain so my mind forgets thingsa, loses things and is not entirely coherent, but it was much worse once. No way could I debate like this before I started on the LDN (historic fact).
    But, I am still far below my healthy operating point, and you lot seem to be fullt able bodied. So this is an uneven match and you should allow for my weaknesses.
    However, you have to agree, I am doing rather well for someone so sick.

  24. bwmbagus says:

    a zealot is someone who cannot ccept theyy might be wrong, which actually applies to my attackers. I know I might be wrong, but I am making a bet with the reaper, that is all.
    If science is not producing effective answers to a disease, then just maybe, it is going in the wrong direction – see EAE model etc etc. The EAE model is an autoimmune reaction induced in rats by injecting myelin fragnments. What is known about MS tells us that this is an artificial model. If EBV is a cause then MS is most likely a side effect of the immune system attacking EBV in the brain, not necessarily about a response to myelin.
    Symptom relief is never going to lead to a treatment for MS, only for the symptoms. I want real researech nto determine the mechanism of MS and the means by which the evolved system controls it in most cases, because not everyone with EBV and possibly some others, gets MS.

  25. bwmbagus says:

    a comment on false hope.
    When I was offered beta interferon, the side effects worried me but I was assured.
    I was very desperate and this proven drug then set about turning on me and leaving me unable to stand.
    With hindsight, I would never have taken it, it was horrible to use.
    They preyed on my desperation to enrol me in the trial though.
    hmm, sounds like what Iam accused of here, except that, LDN is relatively harmless.
    It seems sometimes that all the drugs on offer are part of a trial.
    And people think science has answers! This plkace is like one of Millgrams labs, – either that or you are all PR merchants for the drug industry.

  26. bwmbagus says:

    i wonder if the irony will go over your heads

  27. “This plkace is like one of Millgrams labs, – either that or you are all PR merchants for the drug industry.”

    bwmbagus – I have commented here, so I guess am included in “you are all”. I believe you are mischaracterizing my comments. I can’t know if you are doing this intentionally or not. Que sera sera.

  28. qetzal says:

    bwmbagus,

    Sorry that beta interferon didn’t work for you, but I don’t believe your claim that “they” preyed on your desperation. Beta inteferon does actually work for many people with MS. For a long time, it was the only drug proven to have any benefit.

    As an aside, I’m not sure why you had to enroll in a trial to get it. Betaseron has been around since 1993, and Avonex since 1996. But maybe you participated in some of the Rebif trials (only approved since 2002)? No matter.

    I’m also very sorry that you’re so sick, and that none of the proven drugs have worked for you. For your sake, I sincerely hope that LDN really does work, and is really working for you.

    All that said, you do indeed sound like a biased pro-LDN zealot to me. You consistently distort the truth. You claimed mitoxanthrone was never even tested for MS. You complain that you just want research into LDN and into the mechanism of MS, completely ignoring the fact that such research has been going on for years. You imply that you were tricked into taking beta interferon, and complain that we’re all probably pharma shills.

    You can reject the zealot label if you wish, but the fact is that your bias is huge and obvious, and it’s not helping you or your arguments in favor of LDN. If that’s OK with you, then it’s OK with me. But if you want to be more effective in convincing people that LDN deserves more attention than it currently gets, I think you should reconsider your approach. That’s all.

  29. weing says:

    bwmbagus,

    What is it that you are looking for here? Is it to make us aware that LDN needs more testing. That was stated in Steve’s post. Is it for acceptance of your use of it based on what you have read? Then you’ve come to the wrong place. I can understand your use of it, but I cannot endorse it. I wish you luck.

  30. bwmbagus says:

    michelle – it’s called irony. ie a joke.
    qetzal, i think there are many zealotsa here and I am not one of them. I have already admitted my ignorance regarding mitox so why do you need to go on thumping that tub.Remember – my brain is not fully functional so i do make mistakes. You don’t seem to habve this excuse so please re-read my comments above.
    I took avonex in 2003 to 2006 on a trial designed to get it cheaper on the NHS. I wasn’t tricked, we all need to participate in trials, but the irony you miss is that this scientifically researched drug did me in.
    I knew some of you wouldn’t get it.
    One other thing, I am not biased in favour of LDN. It does not get the attention to infer either. The reason why it needs researching though is precisely because so many have been ‘duped’ into using it. (Note – ironic again, thought i need to point it out).
    Patients deserve the power to order research if they choose to use somthing that needs it, that is all. But they do not haver thyis power, only drug companies and academics do, so I want to change this so we have a voice in these matters.
    This article attempts to asociate the words ‘bogus’, ‘science’ and ‘LDN’, so I am saying that whatever the truth, we just want the research done, the proper full scale trial, so we know one way or the other. Currently all the research is funded by individuals, and until it gets the attention it needs, this will remain so and people like you all will be able to say the science is inadequate.
    I am also arguing that science is fixated with regard to MS on the EAE model, and this is corrupting the path of the research, producing drugs which conform to what is actually an erroneous model of MS. No suprise then that they don’t work very well and no one yet underrstands the disease.
    But thankyou all for your well wishes, but I really do want a more expansive approach to research, and one that can also respond to the most important people in this, people who are often very well informed too – the patients. We have no say in research, but we should have.
    The article is politcal and so am I. So I feel the need to agree with the article except in these matters. I have been avccuse of all kinds of falsities, and I have even tripoed over my own words a few times, but the message is clear. DO NOT TAKE LDN unless you are convinced and can convince your doctor.

  31. bwmbagus says:

    actually, I wasn’t convinced when I started, but I had no alterntive drug to take so I just tried it and am still trying it.
    Lifer is quitw good and euthanasia is sttyill far in the future, but 2 years ago, it was close.
    Big difference there then.

  32. You “ironically” called me a PR merchant for the drug industry when I disagreed with you?

    Ha…Ha… my side, my side.

  33. Rogue Medic says:

    @ bwmbagus – on 18 May 2010 at 9:14 am

    But you hasve avoided the point again – it is this. I would rather end this life than take the proven drugs on offer. What is your answer to that you pontificating bigoted dogmatic pillock!

    What does that have to do with me?

    How did that get to be the point?

    What does any of that have to do with whether LDN has been adequately researched for anyone to advocate that people take this drug?

    You have been pontificating about how wonderful this unproven drug is. Apparently, you reason is that it affects some laboratory values that might be relevant. The only way to find out is to do the research.

    In the mean time, you keep promoting LDN, just as a snake oil salesperson would.

    Vulnerable people look for alternatives and science is niot giving them reasonable ones.

    How does that justify telling lies about LDN to these vulnerable people?

    You keep promotin LDN, just as a snake oil salesperson would.

  34. Rogue Medic says:

    @ bwmbagus – on 18 May 2010 at 10:47 am

    We all make mistakes and being a scientist is about the letters after your name actually. Mine are M.Sc

    Being a scientist has to do with an honest and unbiased approach to examining hypotheses.

    Being a scientist has nothing to do with the letters after tyour name.

    You are no scientist.

    You are just a drug promoter.

  35. Rogue Medic says:

    @ micheleinmichigan – on 18 May 2010 at 4:28 pm

    “This plkace is like one of Millgrams labs, – either that or you are all PR merchants for the drug industry.”

    bwmbagus – I have commented here, so I guess am included in “you are all”. I believe you are mischaracterizing my comments. I can’t know if you are doing this intentionally or not. Que sera sera.

    bwmbagus,

    Stanley Milgram’s experiments were about identifying which people would have the integrity to disobey an authority figure who was giving orders that should not be followed.

    What most people here appear to be criticizing is your constant promotion of LDN.

    LDN is a drug that you are providing PR for. Yet you accuse us of providing PR for the drug industry.

    I agree you are being ironic.

    Your irony is not a joke, although your attempts at logic are.

  36. “Patients deserve the power to order research if they choose to use somthing that needs it, that is all.”

    I agree that relying on market-based research is a problem. There are ways to get around this. For instance the U.S. has a fund for research into rare diseases because they are underprovided by market-based research. http://rarediseases.info.nih.gov. I’m sure there are other funding models as well.

    But I do not agree that patients deserve the power to order research, unless they are raising the funds themselves. Sadly, we do not have the resources to research every remedy that patients believe in. I have no desire to see more children go without sufficient nutrition because a CAM dealer has a great talent for marketing omega-3 to cure cancer.

    I believe that science and medicine must have the primary role in deciding the most promising and needed avenues of research. Politics has a role in collecting funds from citizens and allocating funds based on the will and needs of the people. All citizen have the right to influence political decisions by voting and forming advocacy groups.

    Bwmbagnus – Perhaps you have not seen the potential for personal conflict in your call for research of LDN for MS. It is true that research could be very helpful to you. If the research pans out, eventually it might help you to find better dosages for symptoms, drug contradictions, side effects or risks that you were not aware of. Who knows, it could be that LDN could help one of the current drugs for MS be more effective.

    But scientifically, one needs to understand, there is also the possibility that research will show that LDN does no better than placebo for MS patients.

    If is it proven by science that LDN is only functioning as a placebo for MS it seems this will leave you worse off, as you said…

    “OK, I conced, LDN is just a placebo.
    Time to book myself into Dignitas then because I am going to end up quadriplegic on this stuff. At least you have all coinvinced me this is pointless.
    You see, to me, the only alternative is to take my life before I am too sick to be able to.”

    I am sorry. I can see that it is distressing for you that some people on this site don’t agree with your approach. But this was not the place to come if you wanted people to tell you what you wanted to hear.

    I have commented here often and I learned, eventually, that you get to say what you want, but you don’t get to have people agree with you, so often.

    The sad thing is, science can not prove what you want it too. If it did, it would be useless to us.

  37. bwmbagus says:

    michele – i love you, someone here with a sense of humour.
    I don’t agree that patients should be able to instigate any old research. But, with LDN, there is a plethora of small scale research done which concludes that more conclusive research is needed. Also, LDN is a prescription drug used by around 100 000 people and is now being touted online by charlatans without prescription. This is geting very dodgy, and I just want it resolved so I am going to do all I can to make it possible in the UK for patients to influence research when
    a. The drug in question is being used under doctors supervision in large numbers – which it is
    b. That use results in savings to the NHS in the UK of maybe as much as 100 million pounds a year, enough to fund the required research several times over.
    This group is not stressing me too much, at oleast no moe then my fight for research does, but I decided some time ago to end this life before it became impossibl for me and I have a better way than Dignitas too – painless and easy and doable.
    Most people with MS take no drugs or treatment, and are offered none. The drugs being offered are generally relevant to newly diagnose people who actiually have inflammatory problems rather than just progression to deal with.
    Immune suppressants do work here but the costs are so high they are not the best way of tackling this and if L:DN is as useful as it seems to be, we wouldn’t need them. That, plus the reseaerch that has ben done plus the demand of us patients plus the savings should be enough.
    I think generally research should be left to the experts, and I don’t want to see trivial research done, like homeopathy etc, but if you are interested and want to know more, read PRofessor R Goods book, Cytokines, Steress and Depression for a starter and do visit the LDNScience.org website if you are truly interested in this stuff.
    You are a shining light in this madness in this discussion, I thank you.

  38. bwmbagus says:

    Medic, do not talk to me, I think you are an arrogant donk.
    I will help anyone who wants to know about LDN in any way I can, but I will never recommend it nor will I try to influence someone to take it and never have. My adviced to anyone wanting to try LDN is to read about it as much as they can and get a doctor to support their use and write the necessary prescription and to avoid the websites that are appearing that are selling LDN. They are the snake oil salesman you should be attacking, not me. I am trying to resolve the truth about LDN only, and that is all. I don’t know the truth yet, but I am willing to take the gamble and you have no say in that, and if that influences others, tough shit matey. If my campaigning for research influences people, tough shit matey. What are you gonna about it big man?

    You have only one agenda it seems to me, to try to appear superior and I guess that’s why you hang around this site, it makes you feel like a scientist. Well, you may be, you may not, I don’t know, but what I do know is you have a really crap attitude to others if you disagree with them and I would bitch slap your head off your shoulders if I could reach you. You are very rude and have brought out the aggressive streak in me, and that is hard to do.

    I have never felt the need to treat anyone like I will treat you online before, but you peddle venom and malice and seem unable to debate, which is the real purpose of this site. Debate is discussion where both sides present arguments. You only criticise me, and present no arguments of your own at all.

    I may be wrong about LDN, but I sell nothing and promote nothing except the request to my government to enable patients with power in the process of getting research commissioned.

    The research that has been done for MS to date has failed to prove effective in real terms, the best is maybe able to slow the disease about 30% or so, and that is very poor.

    We need to look at alternatives for MS, and if one exists, we are fools to ignore it, well one does which is being used and has a plethora of clinical anecdotes behind it. I don’t care if LDN is bogus science or not, I care that it gets the attention it obviously deserves, and that is all.

  39. Harriet Hall says:

    bwmbagus said “I will never recommend it nor will I try to influence someone to take it and never have. My adviced to anyone wanting to try LDN is to read about it as much as they can and get a doctor to support their use and write the necessary prescription.”

    Doesn’t advising someone to get a doctor to support their use and write a prescription constitute a form of recommending or influencing? Aren’t you encouraging them to read about it because you are assuming that after they read about it they will be convinced to try it? Doesn’t telling your own story constitute a recommendation and a form of influence? It certainly doesn’t appear that you are as neutral and objective about this subject as, say, Dr. Novella.

  40. bwmbagus – You are too kind.

    I wanted to make one correction to an earlier statement, I believe it was yours but it could have been another commenters. The statement was that LDN was safe to use in pregnancy. For any women who may be contemplating use, the drug information makes it clear that Naltrexone has not been proven safe for pregnancy or breastfeeding.

    http://www.drugs.com/pregnancy/naltrexone.html

    “If you become pregnant, discuss with your doctor the benefits and risks of using Naltrexone during pregnancy. It is unknown if Naltrexone is excreted in breast milk. If you are or will be breast-feeding while you are using Naltrexone , check with your doctor or pharmacist to discuss the risks to your baby.

    Naltrexone Pregnancy Warnings
    Naltrexone has been assigned to pregnancy category C by the FDA. Animal studies have revealed evidence of an embryocidal effect when given in doses approximately 30 to 60 times the human therapeutic dose. There are no adequate and controlled study data in human pregnancy. Naltrexone is only recommended for use during pregnancy when benefit outweighs risk.

    Naltrexone Breastfeeding Warnings
    Naltrexone and 6-beta-naltrexol are excreted into human milk. The effects on the nursing infant are unknown. The manufacturer recommends that due to the potential for tumorigenicity shown for naltrexone in animal studies, and for the potential of serious adverse reactions in nursing infants, a decision should be made to discontinue nursing or discontinue the drug, taking into account the importance of the drug to the mother.”

    In the case of the FDA approval for pregnant women, that is in the cases of women with substance abuse problems, so the risk of Naltrexone is less than that of continued substance abuse.

    This is not a risk/benefit ratio that applies to the general population.

    Best wishes, Michele

  41. bwmbagus – You are too kind.

    I wanted to make one correction to an earlier statement, I believe it was yours but it could have been another commenters. The statement was that LDN was safe to use in pregnancy. For any women who may be contemplating use, the drug information makes it clear that Naltrexone has not been proven safe for pregnancy or breastfeeding.

    http://www.drugs.com/pregnancy/naltrexone.html

    “If you become pregnant, discuss with your doctor the benefits and risks of using Naltrexone during pregnancy. It is unknown if Naltrexone is excreted in breast milk. If you are or will be breast-feeding while you are using Naltrexone , check with your doctor or pharmacist to discuss the risks to your baby.

    Naltrexone Pregnancy Warnings
    Naltrexone has been assigned to pregnancy category C by the FDA. Animal studies have revealed evidence of an embryocidal effect when given in doses approximately 30 to 60 times the human therapeutic dose. There are no adequate and controlled study data in human pregnancy. Naltrexone is only recommended for use during pregnancy when benefit outweighs risk.

    Naltrexone Breastfeeding Warnings
    Naltrexone and 6-beta-naltrexol are excreted into human milk. The effects on the nursing infant are unknown. The manufacturer recommends that due to the potential for tumorigenicity shown for naltrexone in animal studies, and for the potential of serious adverse reactions in nursing infants, a decision should be made to discontinue nursing or discontinue the drug, taking into account the importance of the drug to the mother.”

    In the case of the FDA approval for pregnant women, that is in the cases of women with substance abuse problems, so the unknown risk of Naltrexone can be considered less than that of continued substance abuse.

    This is not a risk/benefit ratio that applies to the general population.

    Best wishes, Michele

  42. pcal says:

    I’ve taking ldn for 1 yr for ank.spondylitis( type of rhe.arth). It works but I hope the studies continue as we all need to understand how our bodies really work. I noticed injuries that should have been very painful the next day werent even noticed til I happened to see them in a mirror.I fell on the side of a mountain on some rocks recently.The next day my forearm showed the chaff rub of about 4in. long but no buising.I landed so hard that my face and chest landed on the rocks too but my face was unmarked and no bruising either.I used to box and I know a hard hit when I experience it.I was thinking at the time:I’m going to feel this in the morning.I would really like to know why this imperviousness to injuries seems to be another side effect of ldn.My kyphosis has inproved and I have less curvature of the spine.I have much less pain in the spine and sternum and my range of motion is 100% improved.I can turn my head almost to the range I had over 10 yrs ago.I have no peripheral neuropathy and my raynaud’s disease is only a memory since LDN.I am a retired electrician,contractor so forget about the profit motive in my case.If it didn’t work,I sure as hell wouldn’t be buying Naltrexon out of India and mixing 50 mgs/11caps in protein powder.With the scales available out of hongkong and the capsules and chocolate whey protein(so I can see the naltrexone is well mixed) available at any health food store. But it still is a heck of an inconvenience to spend hours mixing enough for 3 months at a time.If I could find a doctor to prescribe it I sure as heck would do that.I have insurance but for what?Nsads over the counter so thats out of pocket,too.Nothing was offered to help me but surgery and pain killers so LDN has been the answer.If I must take it for the rest of my life,so be it.I don’t like the prospects of recognizing everbody I know by their feet and being a human question mark.I know you have seen lots of people that meet the discription that I just gave and for doctors to continue to do nothing to help us is,in my opinion,criminal.So there!

  43. weing says:

    bwmbagus,

    I don’t get it. You are in the UK? I thought you had socialized medicine there and it was free. That’s what Obama and our illustrious Congress are delivering over to us here.

  44. weing says:

    pcal,

    That’s nice. But we don’t practice medicine by testimony. We use studies instead. I understand that John D. Rockefeller’s father was a snake oil salesman who pitched his tonic like you are pitching. Of course there wasn’t much real medicine in those days anyway. But he still found it necessary to keep moving after closing the sale.

  45. My apologies for the above redundant post.

  46. Rogue Medic says:

    @ bwmbagus – on 19 May 2010 at 5:44 pm

    Medic, do not talk to me, I think you are an arrogant donk.

    Thank you. You are too kind.

    I will help anyone who wants to know about LDN in any way I can, but I will never recommend it nor will I try to influence someone to take it and never have.

    You are going to stop encouraging people to take LDN?

    I don’t believe it.

    Let’s see if this promise lasts even as far as the next sentence –

    My adviced to anyone wanting to try LDN is to read about it as much as they can and get a doctor to support their use and write the necessary prescription

    I guess this is kind of like when some promise to never drink alcohol again.

    At times, you seem as if you should be taken seriously. Occasionally, this will last for an entire paragraph.

    If you wish to be taken seriously, stop promoting unproven drugs.

    Debate is discussion where both sides present arguments. You only criticise me, and present no arguments of your own at all.

    You repeatedly misrepresent what I write.

    You contradict yourself.

    You promise that you are not promoting drugs, but you maintain a site to promote LDN.

    LDN has not been demonstrated to improve outcomes.

    You admit that, then you state that I should follow you down a rabbit hole of preliminary studies and act as if they are somehow more than preliminary.

    When you debate honestly, you will be treated with more respect.

  47. bwmbagus says:

    That is corect michele. The rationale for prescribing to pregnant women is that Naltrexone was proved safe up to 300mg a day and has been commonly prescrtibed for mothers who were heroine users with no reported danger to the babies. The medic would put that down as anecdotes i spose but it is clinical use data and that is why ist is accepted as safe for pregnant mothers by the doctors who use Naltrexone for opiate addiction.
    I have now decided that seeing as my action of using LDN combined with my campaigning for the research is tantamount to promoting LDN, that I will now forward start to actively encourage people to use it since I have not heard of any adverse reactions to it in low dose. I will still advise people to consult a doctor but I am now convinced, as a result of this debate, that there is no reason not to promote the use of LDN for people who need it.
    In fact, even in the absence of science, the theoretical science looks very good to me.
    So, unless anyone can try and succeed in stopping me, I will go for it.
    The socialised medecine in the UK does not support drugs unless the department of health sanctions them and they will not sanction LDN until the specific use trials are done, but they have no problem if doctors wish to prescribe it, either privately or on the NHS. In fact, quite a number of LDN users in the UK do get it on the NHS, but you need to find a doctor who is supportive.
    One case I now of was a woman with a nasty form of cancer and given a few weeks to live, so was given LDN because it would not do her any harm. That was about 4 years ago now and she is doing fine. Interesting stuff, but another anecdote for sure.
    How many anecdotes does it take to become evidence I wonder.
    So, true to my new approach, LDN is great!!!!
    I’m sure there will be many who will throw abuse at me, but that happens already anyhow. Maybe if we make it a million people using LDN rather than just 100K, or even 10 million, maybe then, they’ll listen or at least maybe then, they’ll realise his is safer than paracetamol, and maybe they’ll even just allow it as an over the counter drug – who nows.
    Thanx medic, you’ve created a monster!

  48. “accepted as safe for pregnant mothers by the doctors who use Naltrexone for opiate addiction.”

    The information says that it is not accepted as safe to the fetus. It is accepted as saferthan heavy heroin, methadone or other addictive substance use.

    These doctors who use Naltrexone for addiction do not even have long term anecdotes to rely on. How long is the follow-up on the children, a few months, a year? The problems with DES were not discovered until the daughters started getting a rare form of cancer around age 19.

    Please do not misrepresent. It makes you look unconcerned about the potential consequences to the people who may take this drug.

  49. urgh – html error.

  50. bwmbagus says:

    well, please argue with Dr Gilhooly of Glasgow, who was originally using Naltrexone for heroin addiction and now uses LDN for other uses.
    I am not the one to argue with there, I merely follow the advice of doctors on this and he says that it is safe for pregnant mums. I just quote him.
    I imagine that many drugs have not been tested for use with pregnant mums that are usede routinely on the basis of their established safety protocols, but under the 1948 prescriptions act, a doctor is allowed to prescribe any legal drug for anby conditiona according to their judgement too, so even policy doesn’t live up to your expectations.
    But, it is true that it is accpted by these doctors as safe during pregnancy anfd that this is used as an argument to justify it’s high level of safety.
    In non pregnent mums though, Naltrexone has been shown to be safe at doses up to 300mg a day, though long term safety at low dose has not et been tested, but neither has long term safety been shown for a grerat many drugs because many drugs have not been in use long enough or even properly monitored to accumulate the nessercay evidence. Also, many drugs for many conditions have not ever been tested for combinatorial safety with other drugs yet for example, in MS, patients move from one therapy to another frequently, and this is true for many conditions.
    The idea that all therapies have adequate scientific evidence behind their use is a myth and these details can only be determined by using patients as guinea pigs in the first place anyhow.
    Naltrexone is a molecule similair to morphine with a difference that makes it act as a pure antagonist and is easily metabolised and passed out of the system with minimal metabolites. The metabolites also clear easily in a few days if the treatment is stopped. This suggests a very safe drug.
    It has been used for up to 15 years in some patients without causing problems, and these patients are under the supervision of doctors who are interested in the outcomes.
    How do I know all this – I read comprehensively on the subject. But that still proves nothing. Yet, it is also as much proff as exists for many other ‘proven’ drugs, so it’s good enough for me.
    If you will only take drugs with long histories of safety, then don’t take anything that has started use after say 1970 – it might harm you!!
    That excludes all the current drugs for many diseases, many of which we know are not safe. Tysabri for example for MS, has now produced 49 cases of PML and 11 deaths from the PML, and they say they can manage PML effectively. hmm

  51. Rogue Medic says:

    # bwmbagus – on 20 May 2010 at 2:43 pm

    The rationale for prescribing to pregnant women is that Naltrexone was proved safe up to 300mg a day and has been commonly prescrtibed for mothers who were heroine users with no reported danger to the babies. The medic would put that down as anecdotes i spose but it is clinical use data and that is why ist is accepted as safe for pregnant mothers by the doctors who use Naltrexone for opiate addiction.

    I don’t know if this is an anecdote, since you have not provided any information about the source of your claim.

    I would expect that naltrexone would be preferable to continued use of heroin. Heroin has been shown to be dangerous during pregnancy.

    While pregnant, there is a big difference between taking naltrexone to stop opioid addiction and taking it because you like what it does for endorphins in the laboratory.

    I have now decided that seeing as my action of using LDN combined with my campaigning for the research is tantamount to promoting LDN, that I will now forward start to actively encourage people to use it

    How will we be able to tell the difference?

    In fact, even in the absence of science, the theoretical science looks very good to me.

    Yes, it works wonderfully in theory. In practice, the theory is all it has going for it.

    As Dr. Novella explained, drugs start out with wonderful theories that are very promising. By the time the research is done most of these drug have been discarded.

    The drug companies realize that these drugs, while very nice in theory, do not work in the real world.

    Is there any reason to believe that LDN is any different?

    Please provide research to support your opinion/theory/hunch/desire.

    Thanx medic, you’ve created a monster!

    Why is it that cranks always seem to want to blame others for their behavior?

    You were promoting LDN before I started commenting.

    You are still promoting LDN.

    There is still no evidence that LDN is even as good as a placebo.

    I do not see any change.

  52. ps says:

    bwmbagus said “I will never recommend it nor will I try to influence someone to take it and never have…”

    Yet, earlier in this discussion, bwmbagus said:

    I use LDN and am happy to encouirqage others because it is safe.

    On the effects of LDN, bwmbagus said:

    However, I might still be fooling myself with the mood enhancing effects of increased endorphin levels. I just want to know if I am fooling myself or if this is real.

    To Rogue Medic, bwmbagus said:

    Well, you may be, you may not, I don’t know, but what I do know is you have a really crap attitude to others if you disagree with them and I would bitch slap your head off your shoulders if I could reach you. You are very rude and have brought out the aggressive streak in me, and that is hard to do.

    Yet, in December 2008, on the effects of MS, bwmbagus reported:

    Also the idea that I could work again if I get more positive. My head is still very quick and good at thinking, but if i do too much – ie 20 minutes, I go into a fog, get very angry and have been known to tell clients of my IT business to go f#### themselves. Even the difficulty involved in cleaning up my dogs messes can send me into a rage. Wierd.

    and

    4. One of the biggest, able bodied people parking in the disabled parking bays when I want to. I have come so close to breaking their headlights for them.

    On efficacy

    …I responded the same as you when I heard about it and remained skeptical for the first 3 months of taking it. I have not deteriorated since starting and am in fact less disabled now than I was a year ago. Something is happening.

    followed by

    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.

    (emphasis mine)

    My point here is not simply to point out the inconsistencies in this story, but to highlight the issues of confirmation bias, cherry picking, projection, and selective memory and reporting. Basically, bwmbagus, you and your associates act as shills to hype this treatment, yet your own behavior and story seem somewhat contradictory to what you report. Cue “it would have been even worse had I not used LDN etc…”

    Finally, Dr Novella supported research. bwmbagus, you say you want research to determine if LDN is truly effective or not, yet you and your cohorts repeatedly present variations on the weight of numbers argument regarding LDN efficacy as if it were a proven fact. OK, here we have “thousands” of people helped and healed through prayer and the use of vegetable oil with red coloring, presented as fact. These people appear to believe that they know the cause of their fillings appearing overnight, for example. Should we believe their explanation? If not, based on anecdotes and testimonials, why should anyone believe yours? You say you are asking for research, but your actions seem more like proselytizing.

    Again, bwmbagus, I wish you well but, for the sake of those with MS and in the hope that LDN does turn out to be a promising lead, I strongly suggest that you reevaluate your own claims and seriously consider the long-term harm that your tactics may be having to your cause.

  53. bwmbagus says:

    dear ps, the comaprison betweemn faith healing and an active drug is kind of trivial. You sound and talk like a papparazzi journo. I make no apology for my style, i am and always have been an irrascible character and am happy to be so and I am not bothered if my approach affects my ’cause’ because I can get LDN.
    If you believe that LDN is a joke, carry on, but as I said a few moments ago – I intend to do everything I can to promote LDN and encourage people who need it to use it. What do you intend to do about that?
    People do nd are believeing the case for LDN and are using it and they seem to be happy.
    The rationa;le is simple, it is that there is no harm in trying something safe before you try something with known and serious risks, say, like Tysabri.
    Pointing out my aggressive nature though does not do anything for your cause, I am aggressive, and angry that I was never offered a safe option before I was offered one that left me very disabled – Avonex.
    If I argue with some people in life, it is becuase some people are irritating in the extreme and deserve a bit of serious opposition. No one is going to get anywhere in this game without being aggressive I assure you. It s not my actions that will influence whether LDN gets researched or not either, I am one insignificant twat amongst many on this site, but at least I am doing something.
    So thankyou for your ‘advice’ but I will continue as I always have, an prosletise my life away.
    I know Dr Novella supported research because I can read too, but in 30 years since this effect was discovered the research hasn’t happened. Not good enough.
    MS though makes people aggressive, because it is a very nasty disease, but you obviously neither understand or can make allowances for that. Maybe it is unwise for sick people to engage in such campaigns, but I am bound by my compassion to do so and it is killing me too.
    December 2008 was very early on in my campaign and I have learned a lot since then. At first I was over the top about all this. Since I did learn that it is better to advise people to do thye research and seek a doctor before deciding to try LDN, but that it seems safe.
    for example, Tysabri scauses PML in around 1 in 400 to 100people and killls a quarter of those. LDN has not caused a death in 100,00 users. ergo, try LDN first!
    Whatever happened to common sense in science?
    I don’t advocate the ridiculous, faith etc, which has zero science to support the idea – though in fact if you read Prof Goods work, you will find that belief and eradication of worry and stress is important to cytokine balance. I simply suggest that in fact, one endorphins in particular – met-5-enkephalin is incredibly important to the regulation of immune function and that is known.
    Also, the science is indifferent to my attitudes, so if someone gets on with it instead of just talking about it, we may get somewhere and shut people like me up – and you.
    But back to tthe main point of my argument.
    LDN is a safe option so if you suffer from a disease requiring toxic therapies, do try LDN first because if it does the trick, you don’t need to poison yourself, but if it doesn’t, accept your fate and take the chemo becuase you’ll need it!
    Why can’t you see the wood from the trees? That is my message try the safe option FIRST!! One that hasn’t killed anyone!!
    If you don’t understand that logic, try reading hippocrates.

  54. bwmbagus says:

    typo – Tysabri causes PML in about 1 in 400 to 1000 people

  55. bwmbagus says:

    medic – regarding the use of Naltrexone in the pregnant, argue with the doctor who said it, not me – see above for the name.
    Also, heroin is actually considered a very safe drug in medecine, it’s the street heroin that isn’t.
    However, LDN research does suggest that heroin is not so safe since it blocks the endorphin receptors and prevents the endorphins doing their work. This would lead to things like cancer, because met-5-enkephalin has been observed to bind to the zeta receptor on tumours and inhibit their proliferation (Dr Zagon) is now being exploited to stop tiumour growth and increase the effectiveness of chemo such as cladribine in the treatment of cancer. The other name for met-5-enkephalin by the way is opiod growth factor or OGF. LDN stimullates OGF.
    Now, you can’t have it both ways. Choose!

  56. bwmbagus says:

    @Rogue Medic
    one other point, the drug companies do know about LDN. The effects were discovered by Dupont in the late 1970′s when Nixon forced them to research Naltrexone for opiate addiction. However, the patent was due to expire which is why they had to be forced to do the Naltrexone research. The endorphin stimulation effects were discovered then, but the patent was due to expire so they never followed up on it.
    The idea that “drug companies would be doing the research if they thought there was anything in it” is demonstrably fallacious. Drug companies are businesses and must make profit, so let’s not blame them for being pragmatic.
    however, then why not NIH? good question, but just look at the investment in politicians and NIH by drug companies to control the research and think about it, and you may begin to understand. If a drug like LDN proves to be effective, it WILL affect the returns on investment in some very expensive projects.
    Would you claim that drug companies do not financially lobby NIH now?
    I doubt you will answer this comment though because you are so selective about what you pick out, a bit like a low grade journalist, but do try on this one.
    20% of what I say may be foolish, maybe even more, probably 100% in your mind, but I am influencing thousands of people to use LDN, so once agin, what are you going to do about it – big man!

  57. bwmbagus says:

    I love this, the more opportunity I get to post comments, the more people watching this argument are going to be influenced to use LDN on the basis of the “try something safe first”, so thankyou to all of you for this.
    The only people who are likely to follow the negative arguments here are people who have no disease to fight and who are only interested in the dogma that this site seems to represent.
    So, thankyou everybody, I know we are helping people understand the logic of using LDN firrst and also understanding the unbelieveable hostility to that simple idea.
    So, to those silent watchers, LDN has not killed anyone and if it works, then you can avoid something that carries risk. If it doesn’t, then by all means, use the drug that carries risk, but remember, they work by suppressing the systems that keeps you alive on this planet. That has a logic, but it also has a lot of risk.
    I have been through the process of not caring about herisks as long as it makes me better (Avonex) but I won’t make that mistake again. As the author of this article makes clear, desperation is no reason to accept the unacceptable.

  58. Rogue Medic says:

    @ bwmbagus – on 21 May 2010 at 8:37 am

    medic – regarding the use of Naltrexone in the pregnant, argue with the doctor who said it, not me – see above for the name.

    No doctor came on here and claimed that naltrexone is safe in pregnancy, so I will limit my criticism to the person pretending that naltrexone is safe.

    Also, heroin is actually considered a very safe drug in medecine, it’s the street heroin that isn’t.

    Addiction to heroin during pregnancy is a risk that justifies taking naltrexone.

    Or are you now recommending that we get the pregnant addicted to heroin? Are you claiming that this does not have any risks?

  59. “The idea that “drug companies would be doing the research if they thought there was anything in it” is demonstrably fallacious. Drug companies are businesses and must make profit, so let’s not blame them for being pragmatic.
    however, ”

    Actually I don’t think that could be true. If naltrexone is actually a dollar a day then it costs only slightly more than my brand name thyroid medicine. This medicine is also out of patent, but the manufacturer still sells it due to profitability. The reason it is profitable is that many people have hypothyroid and they need the medication for life. Volume is profitable.

    If naltrexone worked on the number of conditions that these advocates claimed, then that would be high volume sales. (probably much higher than my thyroid medicine.) So there is some market motivation.

  60. bwmbagus says:

    hey, I never said they came on here. Google Tom Gilhooly of Glasgow and you will be able to ask him about it, He said it at the LDN conference.
    You must be a bit tick if you think I advocate heroin addiction, but heroin is used in medecine as an analgeasic because it is safe – do try to learn to read some day, it woud help you. Clean heroin has the risk of adedriction and I believe has the risk of prootin cancer because LDN tells us that blocking endorphin receptors with exogenous opiates blocks the positive effects of endorphins, but in your world, this is not a problem so in your world, the only risk with heroin is addiction and no other.
    Also, Naltrexone is a nasty way to treat heroin addiction and Dr Gilhooly used to use it for that and decided it was an inhumane way of treating it in the end. Instant cold turkey is nasty, but I suppose you think the junkies deserve, it, well, that would explain a lot if you do.
    My ‘pretense’ about the safety of Naltrexone though is backed up by the Dupont corporation too who did the scientific trials in 1978 I believe. If you are going to try to sound intelligent, do try to get your facts right. Naltrexone was tested for safety at doses of up to 300mg a day, LDN is used in doses of under 6mg a day. I therefore conclude that LDN is both safe and even safer than Paracetamol., which is sold over the counter to anyone who needs it and is used for children too!
    They say a little knowledge is a dangerous thing, in your case it seems to be deadly.
    Also, why don’t you actually answer some of the points I make at you – are you incapable of real debate? If so, why don’t you bugger off and stop irritating people who actually have brains in their head.
    What are you going to do about it big man?
    LDN is safe, so for the benefit of anyone out there considering it’s use, use it before the toxic chemotherapy options you may be offered and if it works, you can avoid the risks of the toxic options. It seems to work for me and tens of thousands of others and you can easily find thiese reports if you google LDN, so do it first!
    My advice to anyone with any of the diseases listed in the Novella article at the head of this debate is to investigate and consider using LDN (Thankyou for the list Mr Novella).
    But make sure4 you engage a doctor in the process for the prescription and do not just buy the LDN from a disreputable source online, you don’t know what you are geting that way. Make sure you get your LDN correctly and with the support of a doctor.
    Before LDN I could not get to my car because I could not sand, my mind was lost and I had terrible spasms with my MW, now, I drive again, the spasms have reduced hugely and my mind is working much better, my concentration is much improved, though I still suffer from the effects of stress but I was very bad before I found LDN and I just wish I’d found it easrlier or I may well still be working and walking. LDN is not a miracle drug or a cure, but it seems to be capable of stopping this disease and many others in those for whom, it works.
    If you find it doesn’t work, then at least you have the rest of medecine available – though quite often with many of the diseases listed in the article that actually means they cannot do anything anyhow. For my secondary Progressive MS, I have no effective options left in standard medecine so I really have nothing to lose, so for me and any like me, LDN is a no brainer.

  61. bwmbagus says:

    michelle, your drug was obviously researched before the patent ran out. Once it has, there is no way of recovering the cost of the research and trial programme, so in this instance you are wide of the mark. Dupont had already refused to research Naltrexone, but Nixons government forced them to, and that is when they discovered the LDN effects, but at that time, nobody suspected endorphins would be so important to immune function. The discoveries of endorphin receptors in the immune system is relatively recent – the last 15 years or so – and the patent for Naltrexone expired in 1983 or 4. The patents for other uses have been applied and acvquired for by several doctors but without the funding, this research will not happen.

  62. bwmbagus says:

    michelle – what is the drug you use? I wish to research it to find out the story.

  63. bwmbagus says:

    michelle, also the money angle has another side. LDN is a low cost drug that would probably also displace or reduce use for a lot of very expensive drugs, for which drug companies are trying to recoup their investments and make huge profits on. LDN might affect the stock market if it gets used. So it’s not just about profitabiltiy, though the potential for profit is good.

  64. Synthroid is the brand name that I use. There is a generic.

    I don’t really buy the conspiracy theory stuff too much, given competition, any drug company that passes up the potential to develop a profitable drug in the hopes of not undermining their other products is asking for their competitor to do it. Aka, GM and hybrid cars.

  65. bwmbagus says:

    Nor do I?. It’s not a conspiracy, it’s pure economics which is why we have government funded bodies to pick up the slack, however, in the Sates and in the UK, there is a lot of lobbying by the industry to try and control what research is done. Do you read the papers or government reports on the drug industry?
    I can provide you with some intersting stuff. The drug industry has very dirty hands unfortunateley and I am one who tries hard to avoid blaming them for this, becaues business is business, but sickness is very profitable, and unfortunately the drug industry has bought off many senators and also provides a lot of funding to supposedly governement research bodies. Funding always comes with strings.
    To simply assume that if a drug is being ignored it must be hopeless is silly – look at the case fo Aspirin with heart disease! That took intervention to get resolved, and that is just one case of many.Gabapentin, an anti spasmodic went out of patent, so it was reformulated as Pregabalin to re-acquire a patent and sold aggressively. It’s just business, but they are not going to refuse profit streams that exist, but they will resist ones that must be created if the profits are low and they affect other profits.
    Whoever invests the billions into LDN research will lose it because anyone will be able to exploit the research and undercut the competition. LDN in mass production would fall heavily in price, estimates range aropund 5 cents a day for generics. Only a patent can protect such investments – what would you do as a CEO of a pharmaceutical company?

  66. bwmbagus says:

    “Synthroid is the most prescribed brand of T4 in the United States. Synthroid was marketed in 1955, but was not FDA approved at that time as it was “generally regarded safe”. In the 1990s, in response to debate as to whether Synthroid was more effective than other levothyroxine preparations, (which ended up concluding that there was little difference between Synthroid and generic brands) all levothyroxine preparations were required to undergo the formal FDA approval process. Synthroid was approved by the FDA on 24 July 2002″

    So that one took intervention and 47 years to be approved and it has no known safety issues. – You see, Synthroid supports my claims beautifully. also, it has an interesting list of side effects.

  67. bwmbagus says:

    “Synthroid is the most prescribed brand of T4 in the United States. Synthroid was marketed in 1955, but was not FDA approved at that time as it was “generally regarded safe”. In the 1990s, in response to debate as to whether Synthroid was more effective than other levothyroxine preparations, (which ended up concluding that there was little difference between Synthroid and generic brands) all levothyroxine preparations were required to undergo the formal FDA approval process. Synthroid was approved by the FDA on 24 July 2002″

    So it took 47 yyears to get approval and is considered safe. I think that supports my comments quite nicely.

  68. bwmbagus says:

    mr medic, i notice you have a lot to say about pain management – try endorphins boosted by LDN – it works!

  69. bwmbagus says:

    I discovered that Synthroid was fist made available in 1955 but took 27 years to 2002 to become FDA approved. It was considered a safe drug.
    Source – wikipedia.
    Sounds a bit like the LDN problem to me.

  70. “To simply assume that if a drug is being ignored it must be hopeless is silly – look at the case fo Aspirin with heart disease”

    Where did I assume that? In fact I made just the opposite statement earlier when talking about rare disease research.

    My point was not that if a drug is ignored by drug companies it must be hopeless. The original statement made the assumption that a drug that is out of patent it can not be profitable to drug companies. I was pointing out that is not always the case. You can not make that assumption, particularly when a large number of patients are mentioned.

  71. bwmbagus says:

    sorry, 47 years that should read – typo.

  72. bwmbagus says:

    But, LDN will not be profiteble enough because it can be made extremely cheaply and it will affect the profits of many other existing highly profitable drugs if it passes te trials.
    They do need to accept the role of endorphins in the body too, and that is taking time. But a drug that will retail for cents will not make enough profit, so it is not a good investment. This doers mean that the industry is not going to be the ones to do the research, because whoever does will lose a lot of money. The patents have been set up so they cannot even get them too. So it is down to NIH or NIHR in the UK and they are not responding at all even though applications for research have been made.

  73. bwmbaguson 22 May 2010 at 10:43 am

    “I discovered that Synthroid was fist made available in 1955 but took 27 years to 2002 to become FDA approved. It was considered a safe drug.
    Source – wikipedia.
    Sounds a bit like the LDN problem to me.”

    The pullquote from wikipedia is “Synthroid is the most prescribed brand of T4 in the United States. Synthroid was marketed in 1955, but was not FDA approved at that time as it was “generally regarded safe”.[5] In the 1990s, in response to debate as to whether Synthroid was more effective than other levothyroxine preparations, (which ended up concluding that there was little difference between Synthroid and generic brands) all levothyroxine preparations were required to undergo the formal FDA approval process. Synthroid was approved by the FDA on 24 July 2002.[6]”

    If you think synthroid is like LDN you should read more on synthroid because at this point you don’t know much about thyroid disease and synthroid or are stretching your connections.

    But let’s consider how synthroid is safe. It is a safe drug for someone who is hypothyroid, but it is NOT safe for someone who is hyperthyroid and should not be prescribed to someone with normal thyroid function. Therefore I would never go online and encourage synthroid use.

  74. “But a drug that will retail for cents will not make enough profit, so it is not a good investment.”

    Earlier, you said a dollar a day, now you are saying cents…well I guess anything retails for cents, is it 100 cents a day then :)

    I’m curious, why do you think you can project the future cost of a product without knowing the demand? Do you realize how much a glass of coke costs wholesale?

    Oh well, it’s been amusing, but I’m done.

  75. bwmbagus says:

    it is currently a dollar a day, but that is prior to mass production which reduces costs hugely.
    Coke is incredibly cheap because it is shipped as a concentrate. Also, they don’t use coca any more which reduces the cost quite a bit.
    Why do you think governetns have published reports about the pharmaceutical industry hiking costs of already expensive drugs? Wal Marts Asda in the UK is about to sell cut price cancer therapies because of this.
    Bristol Myewrsw Squibb make Naltrexone, but the volumes are low, so the costs are highter than they could be if the volumes went up. Thius does not guarantee they would reduce the costs, but they might if pressurised.
    Why does everyone here seem like an inverse Michael Moore? You seem to inflate ideas in reducto ad absurdam pathologically.
    Look, business is about making profit, so if profit is not realistic, there is no business.
    Your drug – michele – seems to have been pushed through against the will of business. Why is this so difficult for you? I assume you must believe business is somehow altruisticm, but it just isn’t. Look at Haliburton in Iraq!

  76. bwmbagus – you realize that synthroid is a synthetic form of thyroid hormone that was specifically developed by Abbott Laboratories to replace dessicated animal thyroid hormone for the application of thyroid replacement, right?

    Do you think Abbott Laboratories didn’t want to develop it? I believe it’s been a good money maker for them, even out of patent.

    I have no idea why you would think it was pushed through against the will of business. Patients who prefer dessicated animal thyroid and think it’s superior, usually claim that business pushed the prescription of synthroid by doctors. You’ve got the wrong angle on your plot line.

  77. Oh and I have to point out, Micheal Moore’s okay, but in my family he’s considered to be a bit too conservative. :)

    But seriously, more of a Colbert and Stewart fan myself.

  78. Rogue Medic says:

    @ bwmbagus – on 22 May 2010 at 9:18 am

    hey, I never said they came on here. Google Tom Gilhooly of Glasgow and you will be able to ask him about it, He said it at the LDN conference.

    There is a lot of misinformation that can be found by searching Google.

    If you are not able to provide any citation, I will conclude that this is as inaccurate as the rest of what you write.

    You must be a bit tick if you think I advocate heroin addiction,

    It would not surprise me. Your advice has not been sensible.

    but heroin is used in medecine as an analgeasic because it is safe – do try to learn to read some day, it woud help you.

    This from the one who misquotes everything.

    Clean heroin has the risk of adedriction and I believe has the risk of prootin cancer because LDN tells us that blocking endorphin receptors with exogenous opiates blocks the positive effects of endorphins, but in your world, this is not a problem so in your world, the only risk with heroin is addiction and no other.

    Heroin is safe/heroin is addictive/heroin causes cancer, because endorphins tell us so.

    You didn’t even make it through a single paragraph without contradicting yourself.

    There is no evidence that naltrexone improves outcomes from cancer.

    Also, Naltrexone is a nasty way to treat heroin addiction and Dr Gilhooly used to use it for that and decided it was an inhumane way of treating it in the end. Instant cold turkey is nasty, but I suppose you think the junkies deserve, it, well, that would explain a lot if you do.

    As with any medication, dosing is important. The indication for use is also important.

    Nobody should recommend putting patients into withdrawal. It is good that your internet source claims to have stopped doing that.

    Also, why don’t you actually answer some of the points I make at you – are you incapable of real debate? If so, why don’t you bugger off and stop irritating people who actually have brains in their head.
    What are you going to do about it big man?

    I do not feel the need to answer a bunch of questions that were both answered in the original article by Dr. Novella and were answered earlier by me. You just keep repeating yourself.

    Repeating yourself is not debate.

    Going off on rants is not debate.

    In my first comment, I pointed out There are 189 studies listed at clinicaltrials.gov. From recruiting to completed. I provided a link to the source.

    You continue to tell the lie that there is no research.

    Flooding the comment section with irrelevant repetitions is not debate, but it may get people to ignore the comment section and just focus on the original article. At least the original article is accurate.

  79. “Flooding the comment section with irrelevant repetitions is not debate, but it may get people to ignore the comment section and just focus on the original article. At least the original article is accurate.”

    That and the comments read top down from the article, unlikely a curious first timer checking out the article is going to read the comments this far down. Of course some of the regular SBM readers might check it out, but they won’t be too impressed, I think.

  80. crohnsmom says:

    Here is the link to Dr. Jill Smith’s recently completed low dose Naltrexone trial with Crohn’s patients– randomized, double-blind and placebo controlled.

    In summary:

    1. 45% of the 40 patients achieved remission inside 12 weeks.
    2. 82% of the patients had their Crohn’s symptoms improve by around 20% in terms of the activity.
    3. Healing was shown in colonoscopies.

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

    Considering that anti-TNF treatment has a 40% remission rate after 5 years and Remicade with Azathioprine has a 50% remission rate after 26 weeks, I would say this is pretty darn good.

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