Duke trial

BarrCarr

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Check out this story about using steroids..https://www.si.com/college/duke/basketball/jeff-capel-and-family-fund-als-breakthrough.
Dr. bedlack is doing a research study now.
 

lgelb

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The headline is a bit over the top. It's not a "breakthrough" unless a bigger randomized trial and clinical experience proves this out. We all want to have hope, but there have been many false signals over the years in ALS.

Best,
Laurie
 

EricInLA

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I remember watching Jeff Capel play at Duke. I wasn't aware that his father had ALS.

I'm not sure how to view Dr. Bedlack. He's really a unique character in our ALS world. The strong consensus among the universe of researchers is that this is a really, really complicated disease -- maybe a series of related diseases -- and that while we always have hope, progress will be slow. Then there is Bedlack and his talk of "reversals". No one else is talking about this! Either he's crazy, or all the others are missing something?? I don't want to get sucked in to false hope, but on the other hand, he's the main man at the Duke ALS program (no fly-by-night university) and I really like his optimism and enthusiasm. I guess I'll maintain hope that this steroid he's working with can yield positive results.
 

lgelb

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Dr. Bedlack's optimism hasn't panned out as yet; he has been involved in several of the hopes that came to nothing, such as Lunasin. Of course, it stands to reason that an optimist is the one who tries the long shots and studies "reversals."

The study he's beginning is based on a single-center 16-patient Italian study from 2005, and clenbuterol (a beta agonist used to treat asthma, not a steroid) was also studied in a small trial for Kennedy's. The measures used in 2005 and the way the statistical analysis was done leave considerable room for interpretation.

Just a cautionary note that every blue-chip university has its share of fly-by-night researchers and clinicians. I'm not calling out Dr. Bedlack, since I have read his work and people here have received care from him -- it's a general comment based on experience. Never feel that you are locked into a particular clinic because it's a name brand -- individual PALS need individual solutions, and they often find them in other places.
 
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Nikki J

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I think there is value in the trials of things like lunasin. In his search of reversals Dr Bedlack reviews the medical records to validate claims. The lunasin trial helped PALS because it gave them information to decide whether to start or continue to spend large amounts of money on it. If something turns out to help wonderful but negative results help too

like most strong personalities Dr Bedlack has fans and detractors. He is among the more approachable of neuromuscular specialists. He answers email from non patient PALS and even used to be on FB until he left over FB privacy issues. He also is the physician who works with the NEALS ALS ambassador program and I have heard him try to present the patient view at conferences

from what I have heard from his patients his practice seems mainstream and sound.

you might enjoy this story The story of Dr Bedlack's tattoo
 

KevinM

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I agree, Nikki. Dr. Bedlack is very knowledgeable and approachable. I think we need physicians like him that are willing to be creative, even if he is a bit unorthodox. And I have no issue at all with him trying to make sense of the “reversals,” though that may not be the best word to describe the phenomenon in those 40+ cases he has identified.

I also agree with Laurie re: the Italian study and measurement issues. Measurements with most ALS drug trials are challenging and often rely in part on the subjective rating scale for muscle function, lacking clear biomarkers. Not to mention the limited number of participants in most trials.

I guess the question that first came to mind was why, if the Italian study showed improvement, was there not any larger follow-up study done in the 15 years since that work. It’s seems like it fell into obscurity until it was “rediscovered” by Bedlack, which is odd to me.
 

KimT

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I'm a huge fan of Dr. Bedlack. He works around the clock. He has never been my personal doctor, yet he has returned emails, the same day, I've written him.

He is willing to pursue many things besides traditional treatments because he has such a strong drive to help us. Unlike many other doctors, he checks out alternative treatments, including supplements. When I wrote him about curcumin and told him I had been taking it since my diagnosis, he said keep taking it. My Mayo ALS doctor told me to stop taking B-12 because the Japanese trial was only on Japanese people and there was no evidence it would help me.
 

BlsdMama

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Kim,

I wonder if Mayo has reversed position on this. I requested a script for intramuscular methylcobalamin last week from Mayo. I have a different doc for this last clinic and he says he feels it has equal effect to Riluzole and certainly no harm, would be happy to write the script to have it compounded. I was surprised but glad. I fight a growing MCV value and anemia so the B12 helps on that alone and if there is added benefit, I'll take it.

I admit I'm a fan of Bedlack. I think there being multiple triggers to ALS onset, and certainly a very different disease course for individuals (I'm 3.5 years into MND and still walking, albeit poorly) has to account for variability. It's not like we're foregoing proven solutions for quack ones. There is nothing that exists that they can offer that truly makes a difference. Why not encourage off the wall scientists in their endeavors. More power to him.
 

KimT

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I went to Mayo in Jacksonville and there has also been a changing of the guard there, too. Younger neuros with fresh ideas.

I think the biggest change I've noticed is that I am being allowed to participate in my treatment. When I first went, I didn't feel heard. My ENT at Mayo actually listened to my explanation of why I was taking each supplement.
 
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