Banned from Hepatitis C forum at MD Junction O/T

[Guest guest]

Hi,

The other night, I ran across a support group site and went to the Hepatitis C forum. I posted my story about using LDN, Berkson and the remarkable results that I have had in using it. Not too many people responded.

Tonight, I received an email from the group which said:

"Your account was banned and is currently under review" with a note from the group "leader"

" looked over the website that you posted about LDN...and it does not list HEP. C at all...it only listed Liver Cancer. I am not sure about this medication...if it was something that would help..more and more people would be on it, and Drs. would prescribe it.

Vicki"

I had posted the Low Dose Naltrexone homepage address. Now, of course, I cannot even rebut or offer any more information about LDN. What a bummer and what a set back for all of the people that the information about LDN might have helped.

It is called MD Junction at:

www.mdjunction.com/

I had done a search for LDN on the website before posting and found several references to it on the forums for other disorders. So, I posted my story, with a link to the Low Dose Naltrexone page as well as to my blog. Now, allegedly because Hepatitis C was not mentioned on the LDN homepage, I am banned.

Nola http://nolahepper.blogspot.com/

[Guest guest]

Hi Nola,

I just registered. I'm going to post about LDN and fibromyalgia with the link to

the Stanford clinical trial.

Tamra in Gilroy

LDN Day 91

post-Stanford Phase II LDN for Fibromyalgia Clinical Trial

>

> Hi,

>

> The other night, I ran across a support group site and went to the

> Hepatitis C forum. I posted my story about using LDN, Berkson and the

remarkable

> results that I have had in using it. Not too many people responded.

>

> Tonight, I received an email from the group which said:

>

>

> " Your account was banned and is currently under review " with a note from

> the group " leader "

>

>

> " looked over the website that you posted about LDN...and it does not list

> HEP. C at all...it only listed Liver Cancer. I am not sure about this

> medication...if it was something that would help..more and more people would

be

> on it, and Drs. would prescribe it.

> Vicki "

>

>

> I had posted the Low Dose Naltrexone homepage address. Now, of course, I

> cannot even rebut or offer any more information about LDN. What a bummer

> and what a set back for all of the people that the information about LDN

> might have helped.

>

> It is called MD Junction at:

>

>

> _www.mdjunction.com/_ (http://www.mdjunction.com/)

>

>

> I had done a search for LDN on the website before posting and found

> several references to it on the forums for other disorders. So, I posted my

> story, with a link to the Low Dose Naltrexone page as well as to my blog.

Now,

> allegedly because Hepatitis C was not mentioned on the LDN homepage, I am

> banned.

>

>

> Nola _http://nolahepper.http://nohttp_

> (http://nolahepper.blogspot.com/)

>

[Guest guest]

Too bad Vicky did not have the good sense to understand that you had to have a doctor prescribe the LDN. If your doctor is using LDN as an adjunct treatment for Hep C...well....that's proof enough LDN's use for Hep C.

There is nothing wrong with you sharing your experience and referring people to a doctor who understands/ prescribes the drug. When people say that LDN is the answer to all prayers, and that they need to be on the drug to cure the illness, then I have issues with that, too.

Don't give up sharing your expereince.

[Guest guest]

I really have to wonder why this happens? I was on Chronic

Babes http://chronicbabeclub.ning.com/

and a bunch of us were posting about the various drugs we’ve tried for

fibromyalgia. I mentioned that I was going to try LDN and the owner of the site

immediately popped up with

Comment by Jenni Prokopy

hey ladies, just a friendly reminder: we can

talk about meds, but remember that none of our conversation is a substitute for

going to the doc. don't sue me if something goes wrong! just have to throw

that out there. xoxo

Everything else was fair game until that point. I find it

odd that we can talk about all the off-label drugs, using various alternative

and complimentary treatments and in some cases, pot, yet LDN gets the big

disclaimer. Perhaps I’m overreacting but that just felt odd. Almost like

I said LSD instead of LDN J

[Guest guest]

After I just posted that I thought you might wonder if I

went about mentioning it the wrong way. What I posted was this:

Comment by Fibrochondriac 1 day ago

Annie I had the same reaction to Cymbalta.

Lyrica made me fat (yeah, blame it on the drug) and Neurontin made me sweat

like crazy. None of them helped with the pain. Don't think I've heard of

Arthotec. But I have a friend on Mirapex and she absolutely swears by it.

I'm trying Low-Dose Naltrexone...heard of that? I need to get the narcotics

completely out of my system before starting the LDN, but I've got my fingers

crossed that this will help!

And that is ALL I said.

Another issue I’d like to bring up. People keep saying

to print everything out and take it to your doctor with the idea that the

doctor might be open to doing their own research and be willing to prescribe

the drug. Boy is that not always the case!

I did exactly that at the Pain

Management Center

at UCSD (University of California at San

Diego). I brought as much as I could including the

info about the Stanford

University study. She

(Dr. Cederquist) told me that the Stanford study was too small and the only way

that she would take my request to the director of pain management at the

university hospital is when the second Stanford study is published in a peer

review journal. Wow, nothing like a truly closed-minded approach.

No worries though, the members of this group helped me find

a local doctor who was much more reasonable and my prescription is en route. I

just have to wonder…did I mess up by asking a doctor that’s works

for a major university? Or was it just my bad luck? I’m pretty sure it

wasn’t my approach because I barely got the word “Naltrexone”

out before she started shutting me down.

[Guest guest]

I think both of your experiences demonstrate that LDN is

becoming

widely known and that the pharmaceutical companies know there is

good reason to be worried. Hence the knee jerk reactions. There

is a negative buzz about it in industry circles due to the

threat to their

bottom line.

It's a turf war.

Garnet

------------------

Very_Low_Dose_Naltrexone

LDN_Information

Dr Steele, ITV's This Morning supporting LDN

Kathy wrote:

>

>

> After I just posted that I thought you might wonder if I went about

> mentioning it the wrong way. What I posted was this:

>

>

>

> /Comment by Fibrochondriac

> <http://chronicbabeclub.ning.com/profile/Fibrochondriac> 1 day ago/

>

> /Annie I had the same reaction to Cymbalta. Lyrica made me fat (yeah,

> blame it on the drug) and Neurontin made me sweat like crazy. None of

> them helped with the pain. Don't think I've heard of Arthotec. But I

> have a friend on Mirapex and she absolutely swears by it.

>

> I'm trying Low-Dose Naltrexone...heard of that? I need to get the

> narcotics completely out of my system before starting the LDN, but I've

> got my fingers crossed that this will help!/

>

>

>

> And that is ALL I said.

>

>

>

> Another issue I’d like to bring up. People keep saying to print

> everything out and take it to your doctor with the idea that the doctor

> might be open to doing their own research and be willing to prescribe

> the drug. Boy is that not always the case!

>

>

>

> I did exactly that at the Pain Management Center at UCSD (University of

> California at San Diego). I brought as much as I could including the

> info about the Stanford University study. She (Dr. Cederquist) told me

> that the Stanford study was too small and the only way that she would

> take my request to the director of pain management at the university

> hospital is when the second Stanford study is published in a peer review

> journal. Wow, nothing like a truly closed-minded approach.

>

>

>

> No worries though, the members of this group helped me find a local

> doctor who was much more reasonable and my prescription is en route. I

> just have to wonder…did I mess up by asking a doctor that’s works for a

> major university? Or was it just my bad luck? I’m pretty sure it wasn’t

> my approach because I barely got the word “Naltrexone” out before she

> started shutting me down.

>

>

>

>

>

>

>

>

>

>

>

>