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levinoaj

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Learn about ALS
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US
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Virginia
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Charlottesville
I'm a professor and freelance journalist commissioned to write an article for a major magazine about the debate over alternative/integrative/complementary medicine. There are many people with stories about how alternative medicine has been helpful in the treatment of ALS. Less common are stories of negative experiences: lost money, false hope, ineffective treatments, etc. Part of the problem is that people who have negative experiences are generally far less likely to talk about them--they want to forget the pain, or they don't want to revisit feeling foolish.

I believe it is important to make sure people understand that alternative medicine, like "conventional" medicine, can also go wrong. If there is anyone out there who has had a negative experience and is willing to share it with me, please contact me at [email protected] . I am very willing to preserve anonymity, and if you have any questions don't hesitate to ask. Thank you so much for your time and consideration, and if you don't want to contact me directly or can't speak directly to the issue, please do post your thoughts on this board.

Alan
 
How about we start by you letting us know exactly who you are and being transparent about who you are writing for in ways we can verify?

I'm a bit protective of our PALS who are dealing with a debilitating, terminal illness.
 
Everyone Beware: We are getting several unusual requests in the last day to take surveys and provide information on alternative medicines and the like. This is a support forum. They should be doing their research somewhere else. If they want to lurk around and read posts that is fine. But, other then that they shouldn't be allowed in my opinion to be questioning any of us. I am getting a uneasy feeling about them.
 
Absolutely--I completely understand, as I'm becoming more familiar with the community. My name is Alan Levinovitz -- I teach at James Madison University in Virginia. I'm writing for Wired magazine. You can see the other article I've written for Wired here: The Mystery of Go, the Ancient Game That Computers Still Can't Win | WIRED .

Part of the reason I'm reaching out here is that a neurologist who I've corresponded with has told me he sees misdiagnoses by alternative-med practitioners, and ALS sufferers are told they have chronic Lyme disease, or that the condition is curable. The result, he says, is a tragic loss of quality end of life care. He cannot connect with me his patients, however, for obvious reasons.

Please don't hesitate to ask me any other questions, and I will answer to the best of my ability.

Alan
 
My sincerest apologies--I didn't realize you can't post the same question twice. I also completely understand if this forum is for support only, and any moderator should delete my posts if I've violated any policies.

Alan
 
That is strictly what is Alan. A support forum. We aren't anyone's guinea pigs or Science experiment. If you want you are welcome to lurk around and read posts on here. But, to ask us any questions for your research is just plain rude and definitely inappropriate.
 
Dear Tillie,

Just so you know more about me and I am completely transparent: My name is Alan Levinovitz, and I teach at James Madison University. I'm writing this article for Wired magazine, for which I've written once before. Please do not feel obligated to reply to this, and as I said, a moderator should delete these posts if they in any way violate policies. My goal is to bring attention to the problems that alternative medicine can pose, which often go unnoticed. However, I do NOT want to cause pain or offend anyone. I'm in no way affiliated with any surveys or scam, though I understand these are common.

Again, my sincerest apologies for any misunderstanding.

Alan
 
Dear Skipper,

I understand completely, and I'm terribly sorry I came across as rude or offensive. I did not wish to imply that anyone was an experiment. The problem is that I simply don't know how to find individuals who are willing to share their own stories of encounters with alternative medicine. This is important for improving the general public's understanding of ALS and alternative medicine, and it is my hope that such stories will help other people avoid victimization.

That said, I will stop posting here as it is clear this is the wrong place to ask these questions. Again, I am so, so sorry I caused offense.

Alan
 
I am leaving one thread in case anyone has experience they wish to share. It seems that Dr Levinivitz is exactly who he says he is. The email is verifiable on the university site.
Dr Levinivitz I have no experience to share but anecdotally have heard stories that are similar.
 
To be honest I would love to see some of the rip off 'treatments and cures' exposed.

I've known PALS to spend many tens of thousands of dollars on fake 'alternative' cures.

I must say however that to just come here and give and email address and say hey send me all this information causes us to be very wary.

alsuntangled is a good place to look at for some research.
 
Dr. L., I would suggest you try Patients Like Me. http://www.patientslikeme.com/profile

One alternate to start with might be the Deanna Protocol. There'll be many hits in Google on this one.
 
Thank you Tillie and Nikki for your understanding, and again I'm so sorry for any offense given. I don't mean to come and say "hey tell me everything." I've read lots of research about fake, rip-off, and unproven ALS treatments. I just think putting human face to suffering and confusion that these treatments can cause is very important--otherwise the only personal stories people hear are stories of success...and that just encourages false hope and embrace of unproven treatments.

Thank you for pointing me to ALSuntangled as well.

Alan
 
I do wish you luck in pursuing this. I think it is important. You might search around for stem cell scam stories. I know there was an old thread on alstdi forum that was absolutely bloodcurdling.
 
Allen, here is the problem. I have seen 2 ALS specialist at highly reputable schools. Both have been quick to suggest that I enroll in medical studies. When I ask what they are trying to achieve with the pills or stem cells I get the vaguest answers or if they are truthfully they say they don't know, because they don't know what causes ALS. When I ask about natural options they quickly dismiss them "because there has been no studies done in them".

So I am to believe that they want to pimp me full if mess and cells with no knowledge of why, but natural alternatives are considered bad because they have not gotten off their pharmaceutical butts to test natural alternatives.

Maybe you could use your writing to expose the influence pharmaceuticals have on the doctors to sell pills, when the real concern should be for helping the patients, which should includes done real studies on the benefits in natural options.
 
krnNdug (Doug),

Thank you so much for sharing. You are absolutely right, there are "good ones" out there, and it's so incredibly generous of you to recognize that improved quality of life isn't always about relieving one's own pain. I am very sorry to hear about your wife having lost money on a false diagnosis of lyme disease. Yours is exactly the kind of story--and insight--that could help readers understand the complicated nature of alternative medicine. Please do e-mail me if you feel like you (and your wife) would be able to discuss further, although of course do not feel obligated at all.

Alan Levinovitz
[email protected]
 
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