Where are the doctors?

[sunnygal]

Where are the doctors?

Baclofen

I have been reading alll the stories of using this drug. It gives me some hope but at the same time I can't afford to buy online. I have insurance...but how do I convince anyone in my health plan to give me this medication. I live in Portland.OR. I only came here yesterday....have some French so I listened to Dr. Olivier speak... well I picked up some... I need to learn more.

[sunnygal]

Where are the doctors?

Just got a notice that this website does not address alcohol withdrawal. OK....I'm good with that. I have been drinking more than "normal." What is normal... It all depends. Sometimes I go for days with nothing. Then the anxiety appears...and what do I do...buy a bottle of wine. Just recently I have been drinking more than usual... I can't drink everyday now. It just screws me up too much. If I can find a drug that could help with anxiety and cravings I would take it.

[drb120]

Where are the doctors?

To Ne/Neva/Eva:

I spoke to you on the telephone. I told you where I live. You told me there are lots of docs and even rehab clinics that treat alcoholics with Baclofen. But you refused to give any names. You said you just can't. So it surprises the heck out of me to hear your take.

I think Amiesen spelled it out in the book. No patent, no money in it, so no big randomized clinical trial funding. Money rules. Otter, you are right too. Docs just have an upper middle class status job where they follow the rules to avoid lawsuits and or problems with their licenses. Until the research is there they are going to put themselves at any risk.

To the last poster, sorry for ignoring your question. I think you are on the right track finding a doc. I hope someone pms you. If your funds are tight it may not be easy, because I'm guessing you will have to travel.

[sunnygal]

Where are the doctors?

I have written 2 posts. None posted.

[sunnygal]

Where are the doctors?

I need to know how Xadrian convinced his doctor to give him baclofen. I just got here yesterday....read all your posts....have looked up online....even listened to dr olivier in french...how can I document so someone will listen to me.

[skullbabyland]

Where are the doctors?

Hi Sunnygal-
Please see my progress thread and various posts in other threads to read about how i got a doc prescription for baclofen. Also if you want to do a phone call or chat session ill be happy to tell you more in detail. PM me if you want to, and either way best of luck!!

[Otter]

Where are the doctors?

drb120;1531617 wrote: To Ne/Neva/Eva:

I spoke to you on the telephone. I told you where I live. You told me there are lots of docs and even rehab clinics that treat alcoholics with Baclofen. But you refused to give any names. You said you just can't. So it surprises the heck out of me to hear your take.

I think Amiesen spelled it out in the book. No patent, no money in it, so no big randomized clinical trial funding. Money rules. Otter, you are right too. Docs just have an upper middle class status job where they follow the rules to avoid lawsuits and or problems with their licenses. Until the research is there they are going to put themselves at any risk.

To the last poster, sorry for ignoring your question. I think you are on the right track finding a doc. I hope someone pms you. If your funds are tight it may not be easy, because I'm guessing you will have to travel.

The correct approach to this issue of getting a doctor is to go to the new site we set up which has all the information, prescribing guidelines etc, and take that to your doctor and tell him to find a specialist who is willing to help. If he is told by a specialist to start presciribing, he has no choice, it would be negligent to ignore specialist advice. In the US, there are doctors in Savannah who are prescribing who work with the Assisted Recovery Clinic, there is Fred Levin in Chicago and the McNeil Center at Harvard, and lots of others. In Canada, there is a clinic connected to the University of Toronto Med School that uses it and in the UK there is Dr. Chick. It is part of a doctors duty to discuss this with the patient and do what the patient asks, provided it is safe (that is a paraphrase of the ethics rule). There is no problem with the drug being off licence as most cancer treatments are. It is the doctors professional responsibility to make enquiries, educate himself and refer you to a specialist. He can be sued if he fails to do this and you suffer harm, such as continuing to damage your health through drink.

If I were still practicing law the other side of the pond, I would make it a speciality to make claims against doctors for the damage they cause by failing or refusing to prescribe properly or even invesitgate this treatment. When we went to our doctor's surgery and saw a different doctor he had changed his whole attitude and was really excited about the treatment they were giving and how versatile a drug baclofen was, so it will catch on and eventually doctors will start to "sweat" a little when they realize there is a treatment and they have sent people away to suffer rather than be given a treatment.

[Xadrian]

Where are the doctors?

sunnygal;1531631 wrote: I need to know how Xadrian convinced his doctor to give him baclofen. I just got here yesterday....read all your posts....have looked up online....even listened to dr olivier in french...how can I document so someone will listen to me.

If you can tell us in which country and/or area you live, maybe some of us can give you some info specifically for your country, like which doctor's can possibly be of help, regulations and attitude against baclofen, etc.

[Ne/Neva Eva]

Where are the doctors?

drb120;1531617 wrote: To Ne/Neva/Eva:

I spoke to you on the telephone. I told you where I live. You told me there are lots of docs and even rehab clinics that treat alcoholics with Baclofen. But you refused to give any names. You said you just can't. So it surprises the heck out of me to hear your take.
I have never had, nor would I ever have, the expectation that general practitioners would prescribe baclofen. The GPs that do prescribe baclofen generally do it within federal guidelines because it is a very safe drug. It is also generally the case that the general practitioner docs who prescribe it do so for patients they know and trust.

I have a very different take on what our expectations should be, not to mention what I think the goals are, for this treatment. No doctor (general practitioner) would begin to treat any other chronic, systemic condition. I don't know why we would expect them to treat our disease any differently.

The situation in Europe is very different than it is in the U.S. I won't belabor the point, because I don't feel it furthers the discussion. Suffice it to say that GPs in the U.S. are under absolutely no moral, ethical or legal obligation to treat addicts other than to recommend that they see a specialist. Taking a prescription medication off label is enough reason for a doctor (of any stripe) to discontinue service to a client. Right or wrong, I am indifferent to the debate.

Drb, you were explicitly clear that you did not want to see a doctor. *see below. The number of inconsistencies and troubling aspects of our conversations led me to believe that no amount of information was going to be helpful. I was (and am) hoping that you will continue to get treatment and continue to get better. Until then I will continue to refrain from addressing the erroneous facts that you continue to share which undermine the legitimate information on this forum.

There is a cardinal rule about offline communication. It must stay, for obvious reasons, personal and private. Because I will never be able to know what you might find uncomfortable, I keep all such conversations absolutely confidential. Even when it pains me. just sayin'


*drb120;1475349 wrote: Thank you for the genuine response. For me, the idea here is to circumvent the traditional alcoholism/mental health treatment protocol. Self administered high dose baclofen usage with a support group of like minded individuals. There are several reasons for doing this, but most importantly for myself, is that the other ways have never worked for me. This does, but it is unfortunately dangerous if done recklessly.

The underline is mine, obviously.

[Cassander]

Where are the doctors?

Here is Xadrian's recipe for getting help from your doctor with alcohol and baclofen. I think it is an excellent start. Anybody have any additional suggestions?

Xadrian;1531789 wrote: I have drunk more than what was good for me for over 15 years also. My wife knew and the last years probably my parents too. And one of my best friends.

I guess I was hiding it good too, because when I was on baclofen, I don't keep my former drinking secret anymore and all of them didn't have a clue that I drank "against my will".

When I first went to my doctor, I took with me some homework. It was pretty much the print-outs of the links you can find on the 5th post of the second page of "my" thread.
You can find them over there.
You can add the results of a recent French study, which proofs the effectiveness and efficiency of baclofen. You can find it here:
Suppression of Alcohol Dependence Using Baclofen: A 2-Year Observational Study of 100 Patients
And also add this one:
https://dl.dropboxusercontent.com/u/59463672/Prescribing-Guide-for-Baclofen-in-the-Treatment-of-Alcoholism-Don.pdf

Then you make an appointment with your doctor and if he/she not already knows about your drinking, you tell him/her that in your opinion you have been drinking lately more than you want to and that you decided to do something about it.

Before your doctor comes up with AA, refusal, etc. you tell your doctor that you did a lot of research over the internet, read a lot about AA, refusal and other meds, but that recent insights indicate that alcoholism is caused by a chemical imbalance in the brain, mainly involving a shortage of the neurotransmitter GABA.

You tell him/her that recently has been discovered that The drug “baclofen” mimics the effect of GABA and that it is one of the few chemicals known to address specifically the GABA-B receptors. Doing so, it compensates for the GABA shortage and totally eliminates the need for alcohol.

You tell him/her that because of the patent of baclofen has already expired, there are currently not much large-scale studies about baclofen going on, but that the French are leader and that the results of a large 2-year study are already been published and that the French authorities recently approved “baclofen” for alcohol treatment on a “case by case” basis, in the rest of the world it is being prescribed “off label” for the same.

You tell him/her that you like to start baclofen and that you are aware of the fact that he/she is possibly not familiar with baclofen prescription for alcohol addiction, so you brought him/her some information, which you like him/her to read and you want to make another appointment to see if you can get it prescribed after he/she read it.

Then you give him/her the home work and wait for the next appointment.

On the next appointment, your doctor prescribing you the baclofen would be the ideal situation.
My own experience and that of many others however, have taught that in most cases you won't get it prescribed by your doctor, but who knows, you might be one of the lucky ones.

If you don't get it prescribed, you ask your doctor which specialist might be prescribing it for you and you ask for a referral to that or another specialist, which can be a psychiatrist (don't mind the charged word, you're not crazy, but in most countries alcoholism seems to be scheduled under psychiatric diseases) or an addiction specialist or even another specialist.

You make an appointment and repeat the instructions as given for the doctor.

If you're lucky, the specialist prescribes it (like in my case). If you are less lucky, there are other ways to get baclofen, if you really want it.
You can find a lot of info and help on this forum.

It's a lot like in court, where you start with a lower court, then go to a higher court and if you loose that also and you're certain thet you're in your right anyway, you take it in your own hands.

But if you decide to start baclofen without doctor's assistence, be careful, baclofen is not candy and no one here, that includes me, is a doctor or a registered specialist.
You do it at your own risk, with the help of people here who did it on their own themselves and share their experiences to help save other people's lifes.

But first take the first step and see if you are a lucky one.
And don't forget: You didn't becoma an alcoholic overnight, so don't expect to be cured overnight also. Expect to have a lot of bumps in the road and don't forget it is a slow process to regain your "normal" life.

Success.

And here is my somewhat holistic response to Xadrian's excellent recipe posted immediately above and also on his thread...

Cassander;1531817 wrote:

Xadrian: We are exactly on the same page. In full agreement. Do you mind if I copy and paste your "recipe" above on my "Where are the doctors?" thread?

Also...I am debating off-line with another highly respected member here on this forum whether family doctors and GPs should be responsive to patients who present with alcohol-related problems.

Simplistically, the debate is as follows. She says that alcoholism and addictions are complicated illnesses that require the expertise of a specialist, beyond the scope of a family doctor's remit. She does not expect a family doctor to know anything about alcoholism, medical tratment therefore, baclofen or baclofen complications.

I say...ok...maybe she is right...today at least...but...here's my argument:

Alcoholism and substance abuse are epidemic. I will get around to posting stats, but suffice it to say that more than 10% of any patient population will present these conditions, whether identified by the patient or not. More than a third (probably more) of any patient population will have a family member who is struggling with alcohol or substance abuse.

If you combine alcoholism, substance abuse, and other addictions and compulsive behaviors, and then add in anxiety, depression and other stress-related conditions and mental illnesses, I wonder if the ordinary family doctor has a single patient in today's world who doesn't present some variation or combination of these conditions...

These are all DISEASES of the brain.

I am going a bit beyond "alcoholism" with the following but...here goes...

It is increasingly becoming apparent to doctors and researchers at the cutting edge of medical knowledge and discovery that many (most?) physical illnesses are the result of mental and/or psychological "stresses" that impact the brain and the immune system and our complex and interlocking hormonal and endocrine systems and ultimately manifest in physical illness: heart conditions, cancer, diabetes, arthritis, neurological disease, etc.

I can supply plenty of support for these assertions to anybody who is interested...

It is increasingly apparent that the "stresses" of life can lead not only to depression and anxiety...they can and do lead to anxiety induced alcoholism...they lead to overeating and obesity and diabetes...they lead to malfunctioning immune response and arthritis and asthma...they lead to inflammation of the arteries and heart disease...

If family doctors aren't trained to identify and treat stress-related behaviors and disease today, it is only a matter of time before they are and do. It may turn out to be the most important preventive thing they can do. No, it will turn out to be the most important thing they can do.

So, I conclude that the family doctor today must at least be able to recognize brain-related illness such as alcoholism and either treat or refer to a specialist. It seems to me that simply avoiding the issue is unacceptable. A referral to AA is unacceptable. Dodging the question altogether is unacceptable. Refusing to self-educate on baclofen and other medical treatments for addiction is unacceptable. If all else fails (as in every case presented to the front line family doctor) refusing to refer to a specialist is unacceptable.

Of course, many alcoholics are in denial and do not recognize the disease. I think a family doctor is still obligated to inform the patient of the consequences of alcohol abuse, much the way my family doctor looks (or should be looking) at my lab work and identifying the markers for incipient heart disease and diabetes and making recommendations regarding diet and life style (or should be making recommendations...).

However...

I am 63 years old. By WHO and other accepted standards, I abused alcohol for over 40 years. I don't think my family doctor, my internist, my GP, my psychiatrist, my cardiologist (I have seen all these types over the years) has ever...once...asked me about my alcohol intake...Even when I was 50 lbs overweight and presented with anxiety and depression and workaholism concerns and elevated levels of cholesterol, triglycerides and glucose...

We have a long way to go.

Sorry to ramble for so long on your thread X. I started out just wanting to say I agree with your post.

Cassander

[spiritwolf333]

Where are the doctors?

Cass -Again, thanks for the thread. I posted this elsewhere, but I think that it might be helpful in promoting your point here on this thread.

http://www.google.com/url?sa=X&q=htt...GBq-fIYXqmvyGQ

[spiritwolf333]

Where are the doctors?

Cass -Regarding the article just released: a clip from their conclusion is as follows (and addresses what you are speaking):

"Although the literature is not sufficient to recommend baclofen as a first-line agent for the treatment of alcohol dependence, clinicians should maintain awareness of new and novel uses of medications for alcohol dependence"

[Cassander]

Where are the doctors?

I realize that the more I read and talk about this subject the more I am persuaded that GPs and family doctors and others who are in the front line of the physician-patient relationship must take responsibility for seeing that their patients receive appropriate treatment when they complain of being unwell (whether or not they recognize alcohol abuse or dependence as the cause).

We can differ as to whether this means treatment by the GP or family doctor or referral to a specialist. I'm not sure it matters as long as proper treatment is found.

In this connection I have been advised off-line that doctors hate treating alcoholics, that medical schools don't teach doctors how to treat alcoholics and that alcoholics are terrible patients because they don't do what they are told, etc.

In an effort to understand this aspect of the conundrum better I have done some (internet) research and offer the following article as an explanation for some of the stated concerns. Its an old article, but undoubtedly, much has not changed.

Why primary care physicians avoid..., ACP Observer Apr 99

From my perspective, all of the issues raised by the author need to go on the table and be considered and understood as alcoholics increasingly demand proper medical care.

Cassander

[Cassander]

Where are the doctors?

I started this thread with the intention of collecting as much information as possible in one place about the very broad topic of why doctors are not more involved in the treatment of alcoholism in general and in baclofen therapy for alcoholism, specifically.

(I should underscore that I am not a "baclofen pusher" who believes that baclofen is some kind of magic bullet. I am acutely aware of the many people who come here and try baclofen treatment without success. I am aware of the side effects and am today more aware than I had been of the risks of rapid withdrawal. I know that the definitive clinical studies have yet to be completed and that they may or may not confirm the safety and efficacy of baclofen. I am aware that there are other medications for alcoholism that have the not inconsiderable benefit of FDA approval. I am aware of the history of treatment for alcoholism in the US and the role of AA and the institutional rehab industry.

The thing is... baclofen worked at a critical moment for someone I love dearly. I see what it can do for people who come here. I desperately want baclofen to pass all of the tests and go mainstream, and if it fails, I have my fingers crossed that so much knowledge is being developed about brain chemistry and addiction that an even better and safer compound will come along to do the job. In the meantime...)

One of the reasons I started this thread was in reaction to the thought process that started when I posted the following in response to something caro said a few days ago. She said that no one should embark on a baclofen journey without medical input. She is so right...Thanks, caro!

I am reposting my response so that all of my thoughts about the subject are in one place. I hope no one minds...

Cassander;1530390 wrote:

Hi Caro

Your advice to newbies is well-taken. The bad news, as you well know, is that medical input for baclofen treatment is in short supply and hard to come by.

As one who has read virtually everything there is to read about baclofen for alcoholism, I am still highly optimistic that baclofen will be demonstrated to be effective for the treatment of alcoholism -- if not for all at least for many. It works for too many people to be a chimera.

What is also increasingly apparent is that side effects, interactions with continuing alcohol use and other drugs, titration issues and individual reactions to titration, not to mention the question of withdrawal, as well as undiagnosed and untreated co-dependencies and co-morbidities are common and not exceptional. It is also increasingly apparent that some of these issues can not only defeat successful baclofen treatment for some people, but can also be dangerous and even life-threatening.

The recent article in the British press about the suicide of an alcoholic who had extensive difficulties and complications at a fairly high dose of baclofen underscores the need for professional supervision of baclofen treatment, as in the case of any meaningful drug therapy.

So, medical input is mandatory. However, it is still widely unavailable.

My belief is that at this stage in the development of baclofen treatment for alcoholism, over five years after the publication of Olivier Amiesen's discoveries in English, it is absolutely inexcusable that neither the government health authorities nor the medical profession in the United States have taken a position on baclofen, and the medical profession, to an overwhelming extent, is still not involved either in treating individuals or developing protocols for baclofen treatment.

It has been reported in the French press that sales of baclofen have increased substantially since 2008. There is very little likelihood that the explanation for this is anything other than increased sales for treatment of alcoholism. Several respected French physicians have issued a treatment protocol which has been publicized in France and is available to any French GP, family doctor, psychiatrist or addiction specialist who wants to inform himself or herself about best practices. Several double-blind placebo-controlled randomized clinical trials are also under way in Europe.

The situation in the US is not nearly as encouraging. There is one doctor, a psychiatrist, well-known to many on this board, who will take patients over the telephone and prescribe anywhere in the country. After that there is virtually no well known medical resource for alcoholics who believe baclofen may be helpful for them.

So far as I can tell, the US government agency responsible for research on medical treatment for alcoholism, The National Institute on Alcohol Abuse and Alcoholism, has taken no public position on baclofen and its website is silent on baclofen treatment for alcoholism. While it appears that the NIAAA is sponsoring a clinical study of baclofen for "anxious alcoholics", this does not excuse its otherwise total silence on the subject. Perhaps it makes it more inexcusable.

The website of the American Society of Addiction Medicine is silent on baclofen. The website of NAADAC, the Association for Addiction Professionals, which represents more than 75,000 addiction counselors, educators and other addiction-focused health care professionals in the United States, Canada and abroad, is silent on baclofen. The American Medical Association has published a Clinician's Guide to Helping Patients Who Drink Too Much (Alcohol and Other Drug Abuse), but it, too, is silent on baclofen treatment. Not only is the Guide silent regarding baclofen treatment, but it also gives the clinician no guidance in assisting a patient in evaluating the risks of embarking on a course of baclofen treatment on his or her own. There is no advice regarding treatment of baclofen withdrawal. Given the increasingly wide-spread self-treatment of alcoholism with baclofen (as witnessed on this site), how can the medical profession simply ignore the treatment of baclofen complications and withdrawal?

I am reminded of the many stories on this forum of members who have gone to their GPs or family doctors seeking treatment for alcoholism, including with baclofen, only to be pushed away with a refusal to treat. Many are unaware that baclofen exists. Isn't that tantamount to going to your doctor with chest pains (however induced) and being told, sorry, we don't treat chest pains?

I am also reminded of my own experience when I asked my highly-regarded and very experienced psychiatrist about baclofen treatment for alcoholism. He said he had never heard of baclofen treatment for alcoholism. His first reaction was: baclofen? That's a narcotic...which of course was totally untrue and misinformed. I said, yes, its true, hundreds, if not thousands of alcoholics are finding that baclofen treatment can result in suppression of craving for alcohol, essentially curing the addiction. I gave him a copy of Dr. Amiesen's book and asked him to read it. He said he would, but I was so disgusted I never went back.

There is absolutely no excuse for this silence and ignorance. Not only must the medical profession proactively inform itself regarding everything there is to know about the potential for baclofen to cure alcoholism, in order to better treat alcoholics, it must also understand and inform itself regarding the side effects, interactions, titration and withdrawal issues and individual reactions of patients as well as undiagnosed and untreated co-dependencies and co-morbidities that are common in alcoholics.

Anything less is gross negligence on the part of the medical profession. Are there no doctors out there who get it?

Cassander

My screen name, which I have been using here for two years, is derived from that of Cassandra, in Greek mythology the daughter of King Priam and Queen Hecuba of Troy. She was granted by Apollo the gift of foresight. Her gift was tragic, however, because although she could see the future, no one believed her. Cassandra foresaw the destruction of Troy and warned the Trojans about the Trojan Horse, the death of Agamemnon, and her own demise, but she was unable to do anything to forestall these tragedies. The use of baclofen as a treatment for alcoholism exists, as surely as alcoholism itself exists, and yet the medical profession stands aside, wilfully ignorant and disengaged. This, too, is an unfolding tragedy.

[drb120]

Where are the doctors?

thanks fot that info Otter. I will inquire about Harvard. I was aware of Levin and Chick. also,of course, Phillip Thomas,MD. he offered me skype consultations and a titration schedule for $6500 up front. he then desperately tried to renegotiate when I declined. Finding a legit local doc who takes an actual health history is challenging. if I have any succes Ill be glad to share. the thread is a step in the right direction.

I think Amiesens book, if read by legit docs, may do more harm than good. there is a lot of hyperbole, and it sounds like a commercial for baclofen. also, the drug clearly helps with cravings, but very high doses for extended periods are always going to be somewhat risky.

I love your enthusiasm, and you and Cassander are obviously intelligent. However I am less optimistic. But good luck!