Researchers taking second look at drug

[BethU]

Hi ... an interesting article about a clinical trial of an epilepsy med as treatment for ALS. The original researchers (in year 2000) found that it DID affect ALS, but it also caused weight loss, which they decided made it contra-indicated for ALS.

Now they're reviewing the data again.

http://www.alsindependence.com/new_look_at_data_polishes_old_principle.htm

 

[hopingforcure]

If it at first we dont suceed.. Well who knows. Thanks for the post Beth.. You never know, always think it will take a bunch of things for each person, and different medicines for each patient. Wow is that a undertaking.

 

[rocmg]

I'm sorry... but I find this story a little bit depressing. I understand more is known now about ALS than ten years ago, but these researchers are the people that ALS patients are depending on getting stuff right first time. It saddens me to see that something done ten years ago could be proven to be effective in the future. It's kind of like a one step forward and four steps back scenario. ALS research doesn't have the luxury of cash and ALS patients don't have the luxury of time for mistakes to be made like this.

But then again, I am nothing more than an embittered daughter.

 

[BobB]

At this point in time, you have to take your treatment into your own hands

I've done research on LDN for my PhD work in immunology and I take it despite having no overt medical problems. It may indeed turn out that many people could benefit from it even if healthy after maybe 35 years old. If I had ALS, I would certainly try LDN. It should be noted that too much, or too little and one tends to lose benefits though it doesn't seen to do any harm. So if you try it, and I would, and I do, and you start to lose effectiveness, you may have to lower the dose or raise it slightly. I wouldn't give up on it!
I would love to hear any stories you have about it!
I would also try forskolin with it (Available at your health food store. Don't underestimate it's potential just because you can buy it over the counter!), and if you are interested I could certainly provide information to justify its potential.
For those that can't get naltrexone, it is NOT a restricted drug so you yourself can buy it and try it.
I don't know why physicians are not at least trying it with their ALS patients since the risk is so minimal and the outcome of the disease itself....well you know that one already.
Make sure that you get USP grade!
Any questions just send me an e-mail.

 

[BLPhill]

BObB

Thank you for the info, I will ask my neuro at the University of Washington about LDN.

 

[BobB]

Naltrexone (LDN)

Since it was part of my PhD work in immunology, I have some scientific research data that I can present to him that may be very compelling if you would like.
I swear by the stuff.
I also suspect that forskolin may add additional potential for effective therapy.
Believe it or not, there is a lot of potential treatment out there, but physicians won't recommend many because they are not proven or off label.
The problem is that because there is no patent protection, big pharma is not going to push clinical trail since any company may produce and sell the treatment after they have paid for the trials.
Even id trails on a treatment began today, it may be a decade before you had physicians recommending it.
To a very large degree, your treatment is in your hands.
This can be a good thing or bad depending on your perspective and ability to research the medical research literature.

If I can help you with anything just let me know.
This applies to everyone.

 

[BLPhill]

BobB'

I do know what you mean, I have had to ask for every medication I have received to date, through my own research. I do know that my health care is in my own hands. I have learned this the hard way, through my journey with als over the past 3 years. My question to my neuro would be, "can I take this in addition to Rilutek". I will get her opinion on ldn and take it from there.

 

[BLPhill]

BobB,

If you would like to send the info to my neuro, she is at the University Of Washington at Seattle her name is Barbara Distad.

 

[jimmybob]

Saw a news teaser on CBS yesterday. Curic is doing a segment on a "possible cure" for ALS. It will air Monday night. I find it very suspect, and a mere ploy for ratings. If there was a "possible cure", we'd know about it.

 

[GlenBrittle]

BobB , I see that you are not showing your email or allowing PM's.

I agree in principal that we are in control of what we are taking.

I can ask my neuro questions , and she will give straight answers , but within the guidelines.

I also have a GP who likes to research the treatments and will take the time to discuss the pros and cons of each. She also has access to many of her peers and medical documents that I can not see.

Can you email me the info on Naltrexone and forskolin. Send it to my name as you see it "atsign" hotmail dot com.

Thanks in advance
Glen