Dr. Fred Levin colleague of Dr. Ameisen

[beatle]

Dr. Fred Levin colleague of Dr. Ameisen

Corkit, I also live in Europe. The time difference for me is 7 hours later than Chicago, making it difficult to call.

I also have lots of questions -- and a strange, very different experience from anyone on here (that I've heard about). So, I think it would be best for me to email him -- that way he could also take his time in answering.

Can you please PM me his email?

(I'm not PMing you because my mailbox is full, and I just deleted one message to leave room for you to send me a PM.)

thank you so much... this is incredible. It feels like it's too good to be true (but I hope not).

[Cinders]

Dr. Fred Levin colleague of Dr. Ameisen

Corkit,

I am going to call him. I hang on to every thread of hope there is. I have been taking Baclofen but no doctor will prescribe it in the amount I need. So, it has been a pipe dream for me.

I pray this man is "real" and will help me.

I'll fly to Chicago to see him if that is what it takes.

Darn. I am so sick and tired of this addiction.

Cindi

[eight days a week]

Dr. Fred Levin colleague of Dr. Ameisen

wort;834722 wrote: All,

I agree with beatle:slow titration = no SE's. Baclofen is a very safe drug provided you titrate up and down slowly. It's just that simple.

-wort

I'm sure it works like that for many people, but this definitely isn't true for everybody. I've had a ridiculously slow titration because of side effects, unfortunately, despite spreading out my doses, taking the last one well away from bedtime etc. And I was chatting to someone last night who couldn't persevere past 30mg after a slow titration simply because of SEs.

I can only think that the doctor must have discovered something taken in tandem that works to reduce the side effects, or that he hasn't seen enough patients yet to come across one who didn't tolerate it well (but 40 so far is a good number).

Either way, it'll be fascinating to hear what he says

[tryagain]

Dr. Fred Levin colleague of Dr. Ameisen

beatle;834689 wrote: tryagain, pls look at the threads I just bumped up to the top. One of them is specifically about Bac SEs.

In my experience, very slow titration keeps the SEs at bey.

I have experienced almost no tiredness on it by taking it very slowly.

Other side effects have been uncomfortable, but receded in relatively short time.

If you are as desperate as i have been, the side effects are tolerable, given the alternative.

Thankls so much for your reply but I haven't really even gone up yet - I was OK until 30 or 35 mgs but then when I went to 40 it all went pear shaped

The problem is, although I have managed some AF days on 35 mg, I am struggling., it most certainly is not my switch.

I have tried going back down and then going back up again, but it seems to make no difference, once I try to take 40mgs I kind of stop being able to function where i can work and drive as normal.

I would also like to email the doctor if anyone would be so kind to send me his address. I will indicate in the subject of the email I am not one of the more urgent cases, I bet the poor man will be very busy. It is very very kind of him.

[eileen]

Dr. Fred Levin colleague of Dr. Ameisen

I tried Dr. Levin last night; but just rang and rang... I was hoping for an answering machine. We only use a calling (prepaid) for calls so his telephone system may have pegged me as "unidentified caller" and got rid of the call.
I'll definitely keep trying. And I'm going to finally get around to replacing my cell phone, so I can call on that.
Has anyone else managed to get through to Dr. Levin?
I, too, wish we could e-mail him.. I was careful to call him at the proper times.

[Guest]

Dr. Fred Levin colleague of Dr. Ameisen

I don't know if this is an inappropriate question or not. Is he willing to give prescriptions for Baclofen over the phone? It would be doable for me if I could get the generic form through a prescription here in the USA. No health insurance, no job right now.
I tried Bac once before with horrible side effects and had to quit after 30 days. Willing to try once more. I am taking my leftover pills now at a very small dose.
I also would like the email address PM'd. Thanks.

[rv9]

Dr. Fred Levin colleague of Dr. Ameisen

eileen;834969 wrote: I tried Dr. Levin last night; but just rang and rang... I was hoping for an answering machine. We only use a calling (prepaid) for calls so his telephone system may have pegged me as "unidentified caller" and got rid of the call.
I'll definitely keep trying. And I'm going to finally get around to replacing my cell phone, so I can call on that.
Has anyone else managed to get through to Dr. Levin?
I, too, wish we could e-mail him.. I was careful to call him at the proper times.

Oh, gosh, this is not good. I got my bac prescription from him a few months ago and I'll run out in less than a week. I emailed him several days ago and have gotten no response. If I run out of bac I'll be in DEEP trouble. I'm at 120mg/day and running out could kill me. Crap.

I've got his home number and will try to call him there shortly. Just damn.

Update: I just reached him at his office. He is with a patient so please don't call him there. I am going to call him at home tonight. I was afraid he died or something. That would have been a potential disaster. I'm going to have to remember to get new scripts a month ahead of time so I can titrate down in case something happens.

[rv9]

Dr. Fred Levin colleague of Dr. Ameisen

tryagain;834924 wrote: Thankls so much for your reply but I haven't really even gone up yet - I was OK until 30 or 35 mgs but then when I went to 40 it all went pear shaped

Dr. Levin had me start w/ 5mg for the first few days, then up to 10 and then 20 for a week. Then add 20mg/day per week. So on week 2 I was at 40, then 60, then 80, etc... on up to 120mg, which is where I am now. It worked fine. No SEs except transient drowsiness in the afternoon (profound tiredness and dizziness that passes in 20-30 minutes).

He said if I ever need to get off do the same in reverse.

As far as him being busy - that's the kind of busy I could deal with. He charges for his telephone "sessions" at $150 a pop. Thankfully he doesn't insist on regular sessions. Just a consultation here and there. My last was in December.

[tryagain]

Dr. Fred Levin colleague of Dr. Ameisen

rv9;835051 wrote: Dr. Levin had me start w/ 5mg for the first few days, then up to 10 and then 20 for a week. Then add 20mg/day per week. So on week 2 I was at 40, then 60, then 80, etc... on up to 120mg, which is where I am now. It worked fine. No SEs except transient drowsiness in the afternoon (profound tiredness and dizziness that passes in 20-30 minutes).

He said if I ever need to get off do the same in reverse.

As far as him being busy - that's the kind of busy I could deal with. He charges for his telephone "sessions" at $150 a pop. Thankfully he doesn't insist on regular sessions. Just a consultation here and there. My last was in December.

Wow Thank You.

I will try that dosage. It is nice to have something concrete rather than guessing.

Have you reached the switch?

I do hope you get your script filled quickly.

[tryagain]

Dr. Fred Levin colleague of Dr. Ameisen

Sorry if this is dumb, but I just reread, is that 5mg 3 times a day to start or simply 5mg all day - I am thinking you start with only 5mg all day?

[eileen]

Dr. Fred Levin colleague of Dr. Ameisen

Please get that baclofen refilled quickly, RV9... you just can't stop suddenly; and need to get results from an emergency call to Levin, or find an online pharmacy that will do an urgent mail for you.
Does anyone in the forum have an excess on hand they can sell?
I, too am uncertain about the doses given by Dr. Levin: I know it should be gradually.
So what would the total daily amount of mg taken for week 1; then going to what each following week?
Sorry, I'm not good at numbers.
Please keep us posted about your progress.

[beatle]

Dr. Fred Levin colleague of Dr. Ameisen

rv9;835051 wrote: Dr. Levin had me start w/ 5mg for the first few days, then up to 10 and then 20 for a week. Then add 20mg/day per week. So on week 2 I was at 40, then 60, then 80, etc... on up to 120mg, which is where I am now. It worked fine. No SEs except transient drowsiness in the afternoon (profound tiredness and dizziness that passes in 20-30 minutes).

He said if I ever need to get off do the same in reverse.

As far as him being busy - that's the kind of busy I could deal with. He charges for his telephone "sessions" at $150 a pop. Thankfully he doesn't insist on regular sessions. Just a consultation here and there. My last was in December.

I'm confused... does this mean he has encouraged us all to call him and that he will charge us all $150.00 per call? I had the impression that he was an extremely compassionate man who was urging us to not do this on our own because he was worried about us.

It's not that I am surprised he would want or expect compensation (in retrospect, that seems only natural), but now it appears as if he was urging corkit to drum up business for him by warning us not to do it on our own and insisting we should call him (at his convenient times).

I said this sounded too good to be true, and I'm afraid I may have been right.

Thank you rv, you have done a great service -- both in alerting us about the charges, and also for sharing the simple titration advice.

I'm still hoping I'm wrong about this, but it seems he made sure corkit kept it corked.

[eight days a week]

Dr. Fred Levin colleague of Dr. Ameisen

I really understand your concern beatle but:

beatle;835110 wrote: It's not that I am surprised he would want or expect compensation (in retrospect, that seems only natural), but now it appears as if he was urging corkit to drum up business for him by warning us not to do it on our own and insisting we should call him (at his convenient times).

Let's wait and see what feedback people post about the good doctor's help and advice...I'm sure he wouldn't have been so open if he wasn't sincerely keen to help

[Jenn]

Dr. Fred Levin colleague of Dr. Ameisen

eight days a week;835131 wrote: I really understand your concern beatle but:
Let's wait and see what feedback people post about the good doctor's help and advice...I'm sure he wouldn't have been so open if he wasn't sincerely keen to help

I called last night and couldn't get through. This morning I sent an email to him, only to find out this evening that it never went out. (new computer...Windows 2007 is a nightmare!) So, feeling desperate, I called the # corkit provided, and he answered.
He's good at listening, analysing, cut right to the core that I was titrating up too fast, gave me a cut back protocol for the next 2 weeks, and said to call back then and he would advise me on how to titrate back up. Then he took my name, phone #, and address. Then he asked me to wait while he checked his appt book for a time we could "chat" and set a time for next week. I told him I really appreciated that he was willing to make such an effort to help people with our disease & he said he enjoyed assisting people with such issues.
At no time did he mention anything like fees, or even bring up the word consultation.
I did google his name & didn't find any complaints. His office is just off Lake Shore Drive,
definitely the high rent district...
Guess I'll just trust the Universe to provide for me and hope that he is an altruistic man who wants to help....
Be Well All,
Jenn

[eileen]

Dr. Fred Levin colleague of Dr. Ameisen

dr. levin - phone calls

If it is only an occasional call for quick advice, I think the $150. could be well spent.
Last time my husband had a med reaction; also stopping one too abruptly, he ended up on a police report; and 4 days in the hospital (having gone literally bananas)... We had to pay a lawyer $1500. and then a $1900 co-pay to the hospital, plus some other expenses.
He had not been on any meds before and we have learned a lot; but we're going very cautiously into the baclofen try. We feel fortunate (despite the expense) that he didn't lose his life. The psychiatrist who had given him 2 sample bags full of the 2 meds he was on had moved away and it was probably our fault we didn't remember or realize the seriousness of quick withdrawals.
So guess we will pay $150. for the phone calls as long as they can be few and far between, only as needed. A full session with someone like Dr. Levin would be hundeds of dollars.