Where are the doctors?

[Ne/Neva Eva]

Where are the doctors?

Cassander;1531388 wrote: But he wouldn't read Amiesen's book? Come on, kronk, how do you give him a pass for that?

Devil's advocate here:
A 300 page autobiography? To what end? Why would he? Why not RJ's book? Or 7 weeks to Sobriety? Is he an addictionologist? If not, what about this cancer treatment: Gerson Institute. Isn't asking a general practitioner about addiction similar to asking him/her about cardiology or oncology?

Ftr, I have given the book to my parents (individually), 3 doctors, and just about everyone I know that cares about me or might care about addiction. I've purchased more than 2 dozen copies, and I only have two.

Two people read it. My aunt and my mother's best friend.

[Colin]

Where are the doctors?

Hi kronk,
Try your doctor with Suppression of Alcohol Dependence Using Baclofen: A 2-Year Observational Study of 100 Patients. It's a concise description of the first sizable (100 alcoholics) scientific study of baclofen over an extended period of time (2 years).

I too am not surprised that your doctor didn't want to read Ameisen's book. Who knows what kind of agony aunt stuff that might be?

[Cassander]

Where are the doctors?

Ne/Neva Eva;1531394 wrote: Devil's advocate here:
A 300 page autobiography? To what end? Why would he? Why not RJ's book? Or 7 weeks to Sobriety? Is he an addictionologist? If not, what about this cancer treatment: Gerson Institute. Isn't asking a general practitioner about addiction similar to asking him/her about cardiology or oncology?

Ftr, I have given the book to my parents (individually), 3 doctors, and just about everyone I know that cares about me or might care about addiction. I've purchased more than 2 dozen copies, and I only have two.

Two people read it. My aunt and my mother's best friend.

So its one of those days, eh?

I'm not sure we need more Devil's Advocates, Ne. We have plenty of them.

Its not only an autobiography. Its a self-report on the effectiveness of HDB by a physician who is on the faculty of a major hospital.

If she is a family doctor she should be well-versed in substance abuse and treatment. Including the latest treatments. Including treatments that work. She is the front line.

Baclofen works, right?

Substance abuse and addiction is a disease that undoubtedly affects more than 10% of her patient population and at least one-third (probably more) of the families of her patients.

If she is concerned that she doesn't know enough about addiction to treat her patient she should refer her patient to a specialist who knows what he is doing. And not just hand her patient a few phone numbers. She should take reasonable steps to make sure her patient is placed in the care of a knowledgeable physician.

I think a family doctor who treats an alcoholic should be familiar with RJ's book and Seven Weeks, too, and Eskapa's book, and have an opinion on them.

I am sorry hardly anybody read the book after you gave it to them. I have had a similar experience. But a family doctor has an obligation to fully inform herself or step aside and make a referral to a qualified specialist. If the qualified specialist won't read the book, god help him.



Cass

[Cassander]

Where are the doctors?

Ne/Neva Eva;1531369 wrote: ...Hyperbole is not what I'm looking for.

Sometimes hyperbole is the only way to get the point across.

As you and I have discussed (I think), Larry Kramer had to use no small amount of hyperbole to get people to listen to him.

Thousands of gay men were dying of AIDS and the docs were running away from it. Kramer got in their face. He got in the country's face.

I think bleep is right. Some degree of righteous indignation is called for.



Cass

[Ne/Neva Eva]

Where are the doctors?

*sigh* It's not "one of those days."

"If she is a family doctor she should be well-versed in substance abuse and treatment."

Why do you assume that? It isn't taught in medical school. Even now. It is, like all other serious and chronic conditions, dealt with by a specialist.

General practitioners do not treat diabetes, or cancer, or heart conditions, or just about anything specific that isn't acute. The appropriate action for a GP to take is to refer someone to a specialist.

As to the specialists: Is there any evidence anywhere that suggests that they are getting information from reliable sources related to this treatment? Has it been presented at a conference? Has it been lectured on? Is it included in any continuing education studies? (My guess is, and this may be cynical, but it may also be true, that they see many more people in need of acute care because of a terrible reaction that everyone assumes is the medication than they see people like me who are whole and healthy for the first time. I have no reason to see a doc, do I?)

Case reports are very interesting and often the first step toward introducing information. I have read some for some of my classes. They are (and this is not hyperbole or devil's advocate) completely irrelevant for day-to-day medicine. Perhaps they are very important, in the long term, but in the short term? And a GP to keep up with them? Hell, even a specialist...How? I can't. I found two yesterday that I printed out two years ago related to baclofen withdrawal. There is important information in there, but I had forgotten about them.

I am weary because I have seen this kind of thread, and similar frustrations, for three years and done nothing about it. So, Ne. Do something about it. Why, okay, Cass. I will.

[Ne/Neva Eva]

Where are the doctors?

Cassander;1531406 wrote:
I think bleep is right. Some degree of righteous indignation is called for.



Cass

Agreed. It pisses me off that people will not share the name of their physicians when their physicians agree to prescribe baclofen.

It makes me really angry and upset and so incredibly sad that this disease is killing people and we cannot get appropriate care.

I guess it is one of those days. I'm going to see if I can channel that righteous indignation productively somewhere.

[spiritwolf333]

Where are the doctors?

Great thread Cass-

This week I met with my prescribing doctor in Savannah, GA. I asked him why more doctors are not on board with our miracle:

1. Off-Label Prescribing- Liability and lack of insurance to cover the doctors when they write off-label. This is especially true when there is so little case history for the off label use.

2. Lack of education and belief that alcoholism is a disease.

And my two cents worth: the alcohol and rehab industry is a multi billion dollar a year endeavor. Check out the reports written by American Medical Association. Alcoholics are a blessing to the industry -like it or not, and they have a powerful lobby.

Assisted Recovery Center of Savannah is an outpatient center and the medical doctor there is fully aware of baclofen and its benefits. If you are interested, you would be required to visit the doctor and I am not sure what else they require. The owner of the facility is Terry Bruce.

Hope this helps someone else the way that it did/does me.

[Cassander]

Where are the doctors?

Ne/Neva Eva;1531415 wrote: ...
It makes me really angry and upset and so incredibly sad that this disease is killing people and we cannot get appropriate care.

...

My point.

[spiritwolf333]

Where are the doctors?

Oh, i now hope Ne will become a little lesser pissed. I revealed the Savannah info-lol. I had planned to start a thread regarding my latest visit but this thread seems to fit the bill.

[skullbabyland]

Where are the doctors?

Ne/Neva Eva;1531415 wrote: Agreed. It pisses me off that people will not share the name of their physicians when their physicians agree to prescribe baclofen.

It makes me really angry and upset and so incredibly sad that this disease is killing people and we cannot get appropriate care.

I guess it is one of those days. I'm going to see if I can channel that righteous indignation productively somewhere.

For the record, I'm happy to share my MD's contact info if anyone wants to PM me.

[kronkcarr]

Where are the doctors?

Ne,

I don't believe I've used hyperbole on this site, and I wouldn't dream of replying to you with hyperbole. I thought that if he agreed on the telephone to treat me with baclofen for my misuse/overuse of alcohol (without me having to pressure him) that he would follow the protocol (There you go, expectation=frustration.). He didn't tell me that he didn't read the book until my third month appointment.

In my case he prescribed baclofen for spasm so it was not off label. That was not a concern.

In FL if a dr scripts over 80 mgs of baclofen they will be flagged "in the system" and if someone sees "the flag" there is a chance that their medical license is in jeopardy. I was not aware of this when I started my baclofen journey. I have a colleague who is an MD and I asked her to script for me. She refused for this reason.

Cass, I'm not giving my former dr a pass. I was pissed that he wouldn't see what I was presenting him and telling him, and I couldn't change him. And yet, I'm grateful to him for the start he gave me.

I understand the anger and frustration about drs not paying attention to baclofen for alcoholism. I agree. And I have been 21 years in a field of medicine that has been pushed down and chipped away at by the AMA. When I started I was going to help change the Western medical field and the insurance company's mind sets. I educated, I presented. I did all kinds of stuff. If anything, their mind sets have grown more narrow and rigid. This is why I didn't get so twisted up about my dr's actions, and this is why I say it will take funding from someone for a baclofen study or a very creative angle to bring attention to the benefits of baclofen.

Colin (I think it was you), thanks for the advice about presenting the more concise study. That makes perfect sense!

[Cassander]

Where are the doctors?

Hi KC

I am not picking on you. I am just going to use your post to beat the dead horse and further demonstrate what a strange world we live in...please excuse me...

kronkcarr;1531468 wrote: ...I thought that if he agreed on the telephone to treat me with baclofen for my misuse/overuse of alcohol (without me having to pressure him) that he would follow the protocol (There you go, expectation=frustration.). He didn't tell me that he didn't read the book until my third month appointment. ...
He let you think that he would follow the protocol and that he would read the book. He did neither. To me, that's inexcusably poor communication.

kronkcarr;1531468 wrote: ...In my case he prescribed baclofen for spasm so it was not off label. That was not a concern. ...
Did you have spasm? If not, I would say that that's...lying...if you can just pretend that every off-label prescription is really on-label, wouldn't you say the system is a farce...well, don't answer that.

kronkcarr;1531468 wrote: ... In FL if a dr scripts over 80 mgs of baclofen they will be flagged "in the system" and if someone sees "the flag" there is a chance that their medical license is in jeopardy. I was not aware of this when I started my baclofen journey. I have a colleague who is an MD and I asked her to script for me. She refused for this reason. ...


Is this really true? Levin scripts prn...around the country...

What does "there is a chance" mean? What happened to medical judgment? There is now some kind of regulatory rule book (written by whom? And interpreted by whom?) which overrides an experienced practitioner's judgment how to treat a patient? That sounds like (worse than!) death panels...

If there really is some kind of regulatory body or compliance board which places limits on treatments and flags scripts they should wake up tomorrow and answer the question whether they are helping or hurting alcoholics in Florida. Of which there are probably a million...in a population of 20 million.

kronkcarr;1531468 wrote: ...Cass, I'm not giving my former dr a pass. I was pissed that he wouldn't see what I was presenting him and telling him, and I couldn't change him. And yet, I'm grateful to him for the start he gave me. ...

Glad to hear you were pissed, kronk. I want to see all of us get really pissed. (Not drunk-pissed.)

Our expectations are now so low that we are grateful when a doctor deigns to take a fee from us, whether he informs himself regarding our disease, lies on his prescription pad or even delivers effective treatment. And we eventually have to fire him.

kronkcarr;1531468 wrote: If anything, their mind sets have grown more narrow and rigid. This is why I didn't get so twisted up about my dr's actions...

You didn't get twisted up because your expectations were so low that even this loser exceeded them (before you fired him).

kronkcarr;1531468 wrote: ... this is why I say it will take funding from someone for a baclofen study or a very creative angle to bring attention to the benefits of baclofen. ...

Kronk, there are numerous studies on-going. They just take time. But you don't necessarily need a completed gold standard double blind placebo controlled study to know that baclofen works. In fact, you can bet your last dollar that there will be plenty of problems with the gold standard double blind placebo controlled study when it is completed.

I doubt there will be many false positives on placebo. The craving is too powerful. Even bac doesn?t work at low doses.

But the Baclofen population on the other side of the equation will be hard to control and evaluate. Maybe the baclofen population will be limited to 80mgs. Some will forget to take the med. Some will take it erratically. Some will drink on the way up. Some won?t. Some will have lots of SEs and get discouraged and quit. Some will take other meds or drugs. Some won?t. Some won?t have SEs but will quit anyway. Some won?t have SEs and will reach a switch. Some will have SEs and will reach a switch. The switch dose may be low or high. Some will be having major trouble at work or with their ?domestic partner? or whatever. Some won?t. Some will have major co-morbidities, some won?t. (I think that is why Leggio is limiting his study to ?anxious alcoholics?.) How will you measure success?

The double blind placebo controlled study is a kind of robot gold standard which has become, to some extent, a replacement for simple critical analysis and judgment.

Even Ne (when she is not playing Bizzarro Ne, the Devil's Advocate) will tell you that there is substantial credible evidence already in hand that baclofen is safe and effective for the treatment of alcoholism. What we need is for the evidence to get out there into the field and for doctors to take their responsibilities seriously.

Yes, you are right, we do need a "creative angle" or something to draw attention to baclofen.

kronkcarr;1531468 wrote: Colin (I think it was you), thanks for the advice about presenting the more concise study. That makes perfect sense!

Yes, I think the study Colin identified is very good. Also the English translation of the French prescribing protocol. Also, in lieu of Amiesen's book, there is a fairly short case study which he did before the book.

That's it for now. Good thing I don't have a day job anymore...

Hope we're still friends, kc!

Cass

[kronkcarr]

Where are the doctors?

Cass,

FYI: Here's what my colleague, the MD, emailed me:

You want me to prescribe a dose above the maximum. The DEA doesn?t like that and there is monitoring of prescribing practices that takes place. There are also all kinds of new regulations in Florida now because of all the pain and methadone clinics that were bogus. I haven?t kept up with all that since that?s not my area-another reason for me to be concerned. I could be doing something I have not registered to do without even knowing.

That's it for me on this thread today. I didn't take offense to anything you've written. Have a wonderful weekend!

[Otter]

Where are the doctors?

Cassander, this is a product of a society in which becoming a doctor is more to do with social status. First you have high school graduates going to do pre-med and razoring out pages of library books to prevent other students from doing well on university exams, then writing the MCAT and trying to get into a top med school, then specializing, getting a career, wife, flash car, kids etc. Where does alcoholism come in to any of this. It is not treated by any medical school as being a medical condition.

So, you are left talking about a non medical condition with someone who thinks of themselves as an "ubermensch" and treats alcoholics as "losers". This specialized, hard driven, materialist attitude is so engrained in professionals that it not surprising that doctors are not interested. Remember the first day of law school when everyone compared LSAT scores even though everyone swore not to? Did anyone say, "hey, I am here to find out how to protect the rights of people who sleep in the gutters in their own vomit, don't talk to me about GPAs and LSAT scores, you Phillistine". No.

When we finally got a good GP, it was still a struggle. He was good because he just spoke to our gastroenterologist and to Dr. Chick and then did what he had to and if one thing didnt' work he kept trying. He didn't ever say he was committed to baclofen but if he was told by a specialist like Chick to use baclofen, he did. Then he tried additional medicines until he got the right combination, and he came to the house if there was a problem and wrote letters. In other words, he just rolled up his sleeves and did his job until he got it right. You just don't get that with most doctors who just look up a drug and write a prescription and go home to get away from the "icky" patients. Doctors are human and sadly most humans are just self centered and don't care much about other people so getting a good doctor is just finding someone who has a conscience and cares enough to actually do his job. The doctors you are talking about are simply uncaring sh.ts and the best way to deal with them is to walk away from them and find someone else. The ones who give you stories about the DEA, off licence prescribing, "not in their area" are the ones who just find it easier to write a few sentences of drivel than to actually do their jobs.

Remember the Hippocratic oath: "First do no evil", which most doctors interpret as "first, do nothing" because if you don't know what you are doing, you could make a mistake and get sued. It is so much easier to say no than to do the research and deal with an unpleasant illness, particularly when there is a convenient way of dealing with the problem by telling patients to go sit in a room with other sufferers and talk about it.

[spiritwolf333]

Where are the doctors?

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