Baclofen Specific Sites

[spiritwolf333]

I think at one point in time or another, many of us could have really used a web site that was exclusively dedicated to the use of Baclofen for alcoholism. I am speaking of current facts, information, studies, trends, prescribing guides, etc. This web site would not necessarily be a "blog" type site -just a "here are the facts-information" site.

A Plan of Action for Baclofen treatment | Baclofen USA - In memory of Dr. Olivier Ameisen

Well, there is a particular site that is in its infantile stage set to do just this. In fact, it will also be bringing information in regarding newer medications addressing alcoholism. I am not an owner in this website -only a contributing viewer. This site is not set up to compete with MWO. Its primary function is to distribute information regarding baclofen and to honor Dr. Ameisen as the founder.

The creator of this site is known to many of you already and I can only hope that you will realize that this site is not set up as a revenue generating entity.

Regardless of our personal conflicts, if we are all in this game together to promote Baclofen and other medications to resolve alcoholism, then it is my opinion we should do the best we can to support each other in this endeavor.

We need a common source of information so any newcomer can quickly and easily begin their Baclofen, Gabapentin, etc program. -Just my opinion.

[Ne/Neva Eva]

Baclofen Specific Sites

It looks remarkably good. Kudos.

[spiritwolf333]

Baclofen Specific Sites

Ne/Neva Eva;1676466 wrote: It looks remarkably good. Kudos.

Thanks for reviewing the site Ne. Perhaps we can all add information and help that could truly help make Baclofen information immediately and concisely available to.....

Your positive persuasion can help lead MANY to a site that promotes just the "facts" so to speak. Sites like MWO can still off the needed social-positive support, but I just have to believe that factually driven site can be a life saver to so many?

[Ne/Neva Eva]

Baclofen Specific Sites

spiritwolf333;1676519 wrote: Thanks for reviewing the site Ne. Perhaps we can all add information and help that could truly help make Baclofen information immediately and concisely available to.....
I'm not sure what I have to offer. I sent Stratus most of the research I've collected and he hosts it for the other site. Maybe he'd be willing to do that for Otter's site? Or maybe just link it from the other site? (Though I wish they would shut that down until it's running again. It would have really freaked me out to find that site when I was still sick. It's like a graveyard.) Research Related to Baclofen - Baclofen For Alcoholism and Other Addictions

Anyway...Not sure what you're asking for. For all the bull shit on here, Otter knows he can reach out and I'll do what I can. Or he should know that, anyway.

spiritwolf333;1676519 wrote: Your positive persuasion can help lead MANY to a site that promotes just the "facts" so to speak. Sites like MWO can still off the needed social-positive support, but I just have to believe that factually driven site can be a life saver to so many?

That site is not "just the facts". There's a whole lot of op-ed going on over there. :H But that's beside the point. Again, I'm not sure what you're asking for from me.

And not that anyone's asked for my opinion, but I would not have made Ameisen the focal point. For many reasons but primarily because the focus is HDB. That's not to take anything away from him. He deserves all the credit, no doubt.

Also, someone needs to study the US medical system a bit more to understand why general practitioners cannot and will not ever be the primary providers of HDB. I've tried explaining it, but you guys seem to think that I'm being difficult. I do understand the reasoning and the arguments for getting primary care physicians involved in treatment for the disease, and they should absolutely be the first line of intervention, but baclofen isn't the kind of drug they are legally or ethically allowed to prescribe.

Anyway, I was about to go on and on but I've said it all before a bazillion times and it falls on deaf ears. I don't agree to disagree, though, just for the record. Some things are True. And some things are Not True. just sayin'

The site looks good. I'm glad he did it. Here it is again, folks:

A Plan of Action for Baclofen treatment | Baclofen USA - In memory of Dr. Olivier Ameisen

[tee111]

Baclofen Specific Sites

Half a dozen threads stuck to the top of this site would help greatly with new users looking info. All the info you'd ever need is here, its just a bit harder to find if your not computer savy. Non of the new sites seem to get much traffic. The french site is top notch but Google translate doesn't do a great job.

[Molly78]

Baclofen Specific Sites

He's done a good job for the UK as well - baclofenuk.com. I think the issues about primary care prescribing are not that much different in the UK & USA, except that in the US everyone is more litigation conscious. We are heading that way as well unfortunately.

However, there are also some interesting possibilities around the obligations of medical practitioners to prescribe in the best interests of their patients even if these prescriptions fall outside current clinical guidelines. Currently the Medical Innovations Bill is going through parliament here. it is intended to make it easier for doctors to use new treatments on patients without the fear of being sued. It applies to new drugs but also those already prescribed for other conditions. it is aimed at treatment of patients with life limiting conditions, but is being supported also by those with debilitating diseases such as MS. What could be more debilitating than alcoholism???

However, the debate is complicated. One of our most respected medical practitioners, Lord Winston, has said the bill puts a doctor at risk of being sued by dying patients because" he has not actually tried innovation in an unusual circumstance".

Otter has some thoughts along the same line. Your medical practitioner is obliged to treat you according to the best evidence out there - not just stick to whatever his computer throws up as the current guidelines. So. If you turn up with a load of paperwork about how effective baclofen is for alcoholism, then in the future your doctor may not be able to sit on the fence saying things like "Yes but it's not licensed......."

Interesting thoughts. And here are the websites that provide the info for you to confront your doctor with. Valuable websites indeed. We should all be grateful for the work that has gone into their setting up.

[spiritwolf333]

Baclofen Specific Sites

Reggie;1676646 wrote: I dont get this nurturing thing Spirit for the so called ..new alcoholics why do you feel responsible for them

Wow Reggie, thanks for the feedback. I don't get to see you post here often.

I am not quite sure what you mean by "nurturing", but if you are talking about "why do I care about alcoholics" other than myself, then I would just have to say that somehow feel I responsible and gifted to at least try and pass on information to those who are still very much suffering under the clouds and chains of alcoholism.

Reggie, I have children and hopefully, before too long, grandchildren that may be subject to this same deadly-life draining disease. I hope more and better answers come out to address our common dis-ease. Even if I did not have prospects of future family members succumbing to this disease, I would still want to try and help others. I assume you are the same way -years on this site and numerous posts?

Reggie, I am 100% a volunteer hoping to help at least one other alcoholic become free. The selfish part for me in trying to help someone else with this disease is that it probably helps me more than them. For some reason, I think that you concur?

Sounds like you are into music. Have you ever listened to the song "In The Journey" by Martin Sexton?
http://www.youtube.com/watch?v=DcFwIg7h3dk[/video]]12. Martin Sexton- In the Journey (remix) - YouTube
A friend helps a friend about his drinking -non AA style.

[spiritwolf333]

Baclofen Specific Sites

Ne/Neva Eva;1676633 wrote: I'm not sure what I have to offer. I
The site looks good. I'm glad he did it. Here it is again, folks:

A Plan of Action for Baclofen treatment | Baclofen USA - In memory of Dr. Olivier Ameisen

Ne -Just the fact that you acknowledge the site and say what you have said about it is huge in and of itself. Others that listen to you and follow your posts will most likely visit the site. More importantly, newcomers might be able to find this additional site as extremely resourceful in their quest.

[spiritwolf333]

Baclofen Specific Sites

As someone had pointed out earlier, I had success with being prescribed hd baclofen for my alcoholism from a (quick-detox) quasi-rehab center. (Ne). Prior to going, I sent all types of information and had several conversations. All the information, etc I had sent was just pulled together haphazardly.

Before long, I hope that we will see something that specifically outlines what one should do to prepare themselves for their visit to a doctor regarding alcoholism and baclofen:

(1) Your History of Alcoholism (Abuse/Dependency)
(2) Current symptoms/problems related thereto
(3) Your current level of disabilities related thereto
(4) Baclofen Solution:
(a) Diane Sawyer-Dr. Ameisen interview video
(b) Brain/Baclofen video
(c) Dr. Ameisen Book
(d) Current research papers including baclofen trials
(e) Safety record of HD baclofen
(f) Medical Prescribing Guide (with patient acknowledgement form)
(g) Internet website links

One of the most difficult parts to even approaching a doctor about alcohol abuse is just in allowing yourself to vulnerable enough to tell the truth. I have found that most doctors are more caring and understanding than you can possibly ever imagine. But they have to learn too.

Please provide feedback and modifications to this.

[Ne/Neva Eva]

Baclofen Specific Sites

Molly78;1676793 wrote: ...Your medical practitioner is obliged to treat you according to the best evidence out there - not just stick to whatever his computer throws up as the current guidelines. So. If you turn up with a load of paperwork about how effective baclofen is for alcoholism, then in the future your doctor may not be able to sit on the fence saying things like "Yes but it's not licensed......."

Physicians are obligated to treat people within the guidelines and laws set up to compel them to do exactly that. They are morally, ethically and legally bound by those rules, otherwise known as current guidelines. The easiest way to find those guidelines is on the internet.

I can't imagine harassing, much less threatening, a physician into treating me with an off label medication at extremely high doses and then expect the physician to treat me with my best intentions. It is not just a matter of personalities that is the issue. They are legally bound (and morally and ethically) to avoid doing just what we are asking them to do.

Add to it that our best baclofen-for-alcoholism advocates do not adhere to or condone the use of HDB. Couple that with the financial disincentive to further research and it becomes exceedingly clear why this movement hasn't gone further. Oh, and the fact that we're a bunch of anonymous internet alcoholics doing this on our own and getting us together is a lot like herding cats, and well...

Not that I'm a proponent of people trying. The new site is the best I've seen so far.

[Spirit, you vastly overestimate my influence. I'm just a formerly drunk chick with too much time on my hands and the ability to type fast. People will check out the new site. And I don't think I have ever publicly denounced any effort to further the goal of getting information out into the world, regardless of my personal opinions. just sayin' Again and again and again.]

[Otter]

Baclofen Specific Sites

Ne/Neva Eva;1677370 wrote: Physicians are obligated to treat people within the guidelines and laws set up to compel them to do exactly that. They are morally, ethically and legally bound by those rules, otherwise known as current guidelines. The easiest way to find those guidelines is on the internet.

I can't imagine harassing, much less threatening, a physician into treating me with an off label medication at extremely high doses and then expect the physician to treat me with my best intentions. It is not just a matter of personalities that is the issue. They are legally bound (and morally and ethically) to avoid doing just what we are asking them to do.

Add to it that our best baclofen-for-alcoholism advocates do not adhere to or condone the use of HDB. Couple that with the financial disincentive to further research and it becomes exceedingly clear why this movement hasn't gone further. Oh, and the fact that we're a bunch of anonymous internet alcoholics doing this on our own and getting us together is a lot like herding cats, and well...

Not that I'm a proponent of people trying. The new site is the best I've seen so far.

[Spirit, you vastly overestimate my influence. I'm just a formerly drunk chick with too much time on my hands and the ability to type fast. People will check out the new site. And I don't think I have ever publicly denounced any effort to further the goal of getting information out into the world, regardless of my personal opinions. just sayin' Again and again and again.]

I sometimes forget why we don't get along and then you post this stuff and it all come flooding back.

You have stated this in the completely wrong way.

There aren't "laws" and "guidelines" which tell doctors how they are "obliged" legally and "morally" to prescribe off-licence drugs.

Doctors are governed by the ethics codes of the state or national jurisdictions in which they practice and they all require doctors to use their own abilities and knowledge to treat patients with what they consider, in consultation with their patients, to be the best treatment, whether or not it is off-licence. You have also misstated Dr. Ameisen's own position on this because he repeatedly advises in his book and elsewhere that many routinely used medications are used off license and in high doses, such as high dose baclofen for children. Also most cancer drugs are prescribed off-license. (Neva's stereotypical doctor: "sorry, I know you are dying of cancer and only have a month, two tops, to live but I can't give you this drug because the state legislature says it is off-license because so few people get this type of cancer that no one has done a trial yet and I am certainly not going to risk my career for your life...what do you think I am...a doctor?...."

That is the ethical position.

The legal position is in two places, legislation and court decisions based on Tort or negligence law. There is no legislation telling doctors how to prescribe baclofen. The case law on negligence requires doctors to prescribe what "they" the doctors consider to be the best medication and to do so after doing the research into what is best for their patients and in accordance with what their patients want.

That is the legal and ethical position. Telling people not to go through the process of discussing treatment options with their doctors and saying it is a form of harassment is completely wrong and you shouldn't be posting things like that on a form where people need good advice. You aren't a lawyer or a doctor and you shouldn't post nonsense about the legal and ethical position which is plainly and utterly wrong.

[Ne/Neva Eva]

Baclofen Specific Sites

You cannot actually believe what you've posted. Are you kidding or delusional?

Otter;1677865 wrote:
There aren't "laws" and "guidelines" which tell doctors how they are "obliged" legally and "morally" to prescribe off-licence drugs.

Just a cursory google search elicits these results:

New Federal Regulations and Pharmacy Practice

There are essentially 3 sources of laws that govern the way pharmacists practice their professions. First, there are statutes, which are passed by the legislative branch of government. Next, there is the "common law," which is the law made by judges, who issue opinions in cases brought before them. Finally, there are administrative regulations, which are made by administrative agencies. Administrative agencies are a part of the executive branch of government and are responsible for implementing changes in policy and for enacting rules to administer the laws that were passed by the legislature.[1]

Pharmacy boards are an example of an administrative agency on the state level. On the federal level, the agencies that most directly affect the practice of pharmacy are the US Food and Drug Administration (FDA) and the Health Care Financing Administration (HCFA), which are part of the Department of Health and Human Services (DHHS), and the Drug Enforcement Administration (DEA), which is under the umbrella of the Department of Justice.

http://www.medscape.org/viewarticle/418537

From the DEA, Office of Diversion Control (just one branch of the DEA which applies to medications, there are many, many, many):

Valid Prescription Requirements:

The practitioner is responsible for ensuring that the prescription conforms to all requirements of the law and regulations, both federal and state.


Ethics are just as detailed and with just as many restrictions, and with dramatic repercussions should the physician not follow the guidelines. Here's just one (abbreviated) example. Feel free to read it.

http://www.ama-assn.org/ama/pub/phys...al-ethics.page

It's not just doctors and pharmacists that are bound by these rules, laws and codes of ethics. Nurses are too. Nurses must question any physician's order for medication that exceeds the regulation guidelines. They are bound, legally and ethically, to verify the information before administering the drug. If the nurse does not do that, then they can be legally charged and (among other things) lose their license or spend some time in jail.

The use of baclofen at high doses in children? Please. They don't even regularly use it in high doses in adults. Instead of arguing about it, prove it.

The rest of what you wrote is just nonsense and not worth the time it takes to type a response.

I want to note here that despite the fact that I really, really want to, I've refrained from suggesting that Otter can be combative, arrogant and irrational to the detriment of just about everything he touches related to baclofen.

oops.

[Ne/Neva Eva]

Baclofen Specific Sites

What's more, there is apparently a current debate about this very subject in the UK. At least based on this post:

Molly78;1676793 wrote: H
However, there are also some interesting possibilities around the obligations of medical practitioners to prescribe in the best interests of their patients even if these prescriptions fall outside current clinical guidelines. Currently the Medical Innovations Bill is going through parliament here. it is intended to make it easier for doctors to use new treatments on patients without the fear of being sued. It applies to new drugs but also those already prescribed for other conditions. it is aimed at treatment of patients with life limiting conditions, but is being supported also by those with debilitating diseases such as MS. What could be more debilitating than alcoholism???

However, the debate is complicated. One of our most respected medical practitioners, Lord Winston, has said the bill puts a doctor at risk of being sued by dying patients because" he has not actually tried innovation in an unusual circumstance".

[tee111]

Baclofen Specific Sites

I haven't been on here in quite some time. Used to post a lot last year.

It seems to me that certain a few certain members for what ever strange reason would like to see the back of this messageboard. Its sad really. No one uses loops old site and the those others tell you nothing that this site doesn't. As I already said, why can't we have sticky thread on this board!? It would solve most of the problems.

On an other note...

You can't just go marching into your gp and expect him to write you a script for an off label drug for what could end up being a massive dose of baclofen. By all means try, no ones saying you shouldn't but don't throw your dummy out of the pram because he says no based on stuff you printed off the internet.

You can always buy it off the internet like lots of us do if you trust the studies. If you feel useasy then try to understand how your gp feels about the whole thing.

[Otter]

Baclofen Specific Sites

You really are out of your tiny mind.

I know what the laws on drugs are in the UK since I have been a criminal lawyer there.

There is no law restricting the use of baclofen. The laws you refer to restricting drug use divide them into "classes" making some of them illegal and some requiring prescriptioin. That has nothing to do with what we are talking about so, again, there is no legislation affecting the issue of doctors prescribing baclofen at high dose or off license.

The "court made" law, which you refer to is "tort" or "negligence" law which requires doctors to be proficient in their use of drugs which are available and would benefit their patients. so, again, you have posted a complete red herring.