Re: Newbie..why won't Naltrexone agree to have trials?

[Guest guest]

I find it very strange that a Neurologist would say that. The reason as I understand it, is that Naltrexone is a older drug that has lost it's patents, and since it can be made cheaply and sold in Generic form, why would any drug company spend the money for a trial and not be able to makes it money back on the product? Jinan Rashid <ginamoi@...> wrote: Hi all, I'm , 29 yr old female, had my first MS attack and MRI in 2004..recently lost my mom to cancer (unfortunately I hadn't heard of LDN) and that must've led to the relapse I had last month, that lasts till now. I've been reading and researching a lot of forums about LDN, and I decided maybe it should be my drug of choice, since I'm a drug virgin that way....I saw my neurologist today and asked for a prescription, he refused to give it to me, he advised me instead on steroids and interferons....but to my surprise he know all about LDN, he said there's been no trials or evidence that this drug will work so as far as he's concerned he might as well prescribe me

paracetamols, he even asked if the drug is working so well then why won't Naltrexone accept to go for a trial, because apparently he himself phoned and asked them if he can get permission to conduct a trial on the drug and they refused....I think he has a point..why are Naltrexone refusing to go onto trial for MS? if anyone has the answer to this please let me know.... Thank you all and be brave....and it's not all in your head, as I recently found out.... Love. . For ideas on reducing your carbon footprint visit For Good this month. __________________________________________________

[Guest guest]

Oh ,

Your doctor is not very well informed.

Tell your doctor this med has gone to trial for MS at UC San Francisco and the results come out in November (as far as we know, they have done fine).

Also for MS, there is a trial going on its 4th month in Italy. The trial is for 6 months total and they hope to share their results in February. As far as we know this trial is going fine.

Also for MS, there is a trial that just started with Dr. Pincus. I will send you the details and he might still be accepting people for this trial.

Also, this drug has gone to trial for Crohn's and did great. It is now in its 2nd phase of a larger trial for Crohn's. and that is at Penn State in PA. They are also still accepting new people for this trial.

Also, Stanford University is currently doing a trial for LDN for Fibro.

Also, Dr. McCandless is just starting her trial for LDN and Aids that is being done in Mali, Africa.

Also, Dr. McCandless had earlier completed a small scale trial for LDN with Autism that was successful.

There are also animal studies that have been done, and currently the MS Society has given money for another animal study on LDN.

If your doctor would like to do a study and he has the financial backing for this study, we can put him in touch with the right people. I am afraid that the major problem is that the larger pharmacy companies do not want to give money for studies because the patent on Naltraxone ran out years ago and there is not much money to be made with this medicine.

I will send you copies of the trials so you can share them with your doctor.

My best

Aletha

[low dose naltrexone] Newbie..why won't Naltrexone agree to have trials?

Hi all,

I'm , 29 yr old female, had my first MS attack and MRI in 2004..recently lost my mom to cancer (unfortunately I hadn't heard of LDN) and that must've led to the relapse I had last month, that lasts till now.

I've been reading and researching a lot of forums about LDN, and I decided maybe it should be my drug of choice, since I'm a drug virgin that way....I saw my neurologist today and asked for a prescription, he refused to give it to me, he advised me instead on steroids and interferons....but to my surprise he know all about LDN, he said there's been no trials or evidence that this drug will work so as far as he's concerned he might as well prescribe me paracetamols, he even asked if the drug is working so well then why won't Naltrexone accept to go for a trial, because apparently he himself phoned and asked them if he can get permission to conduct a trial on the drug and they refused....I think he has a point..why are Naltrexone refusing to go onto trial for MS?

if anyone has the answer to this please let me know....

Thank you all and be brave....and it's not all in your head, as I recently found out....

Love.

.

For ideas on reducing your carbon footprint visit For Good this month.

[Guest guest]

It IS about the almighty dollar. 'They' couldn't charge $1500.00 per month for an old drug that's patent has run out. UCSF has recently done a trial on LDN for MS. It only lasted a short time. I don't know what they determined. Time will tell? Your doc could do a trial if he were to get funded, I think. Penn State has/is doing a trial with LDN for Crohn's now. I haven't talked to many people with MS (Progressive at least) that can tell that the CRABs are helping. Most people with a benign form of MS choose to believe that it's the drug that is keeping them from progresssing. The proof is not convincing. Marcie Tim Purcell <jsbam2003@...> wrote: I find it very strange that a Neurologist would say that. The reason as I understand it, is that Naltrexone is a older drug that has lost it's patents, and since it can be made cheaply and sold in Generic form, why would any drug company spend the money for a trial and not be able to makes it money back on the product? Jinan Rashid <ginamoi (DOT) co.uk> wrote: Hi all, I'm , 29 yr old female, had my first MS attack and MRI in 2004..recently lost my mom to cancer (unfortunately I hadn't heard of LDN) and that must've led to the relapse I had last month, that lasts till now. I've been reading and researching a lot of forums about LDN, and I decided maybe it should be my drug of choice, since I'm a drug virgin that way....I saw my neurologist today and asked for a prescription, he refused to give it to me, he advised me instead on steroids and

interferons....but to my surprise he know all about LDN, he said there's been no trials or evidence that this drug will work so as far as he's concerned he might as well prescribe me paracetamols, he even asked if the drug is working so well then why won't Naltrexone accept to go for a trial, because apparently he himself phoned and asked them if he can get permission to conduct a trial on the drug and they refused....I think he has a point..why are Naltrexone refusing to go onto trial for MS? if anyone has the answer to this please let me know.... Thank you all and be brave....and it's not all in your head, as I recently found out.... Love. . For ideas on reducing your carbon footprint visit For Good this month. __________________________________________________

[Guest guest]

Hi ,Welcome to the group!Apparently your neurologist is unaware of the fact that there already exist clinical trials regarding the safety and efficacy of LDN.For example, here is a summary of a German clinical trial of LDN for MS:http://tinyurl.com/2vlwnkThis site presents preliminary results of an Italian study regarding LDN for MS:http://tinyurl.com/39dnyxThis site summarizes a clinical trial of LDN for Crohn's disease (another autoimmune condition):http://tinyurl.com/2urywqA number of other LDN-related studies are currently in progress, as you can see from this site:http://tinyurl.com/2cgqw6For a very good source of information about LDN, with many great links, visithttp://tinyurl.com/2boot2For a good LDN-related source of information about treating MS, visithttp://tinyurl.com/grpm9You might want to share these sites with your neurologist.With best wishes,Dudley DelanyP.S. Pardon my ignorance, but what are paracetemols?

dudley_delanyFrom: Jinan Rashid

Sent: Wednesday, October 24, 2007 2:05 PM

low dose naltrexone

Subject: [low dose naltrexone] Newbie..why won't Naltrexone agree to have trials?

Hi all,

I'm , 29 yr old female, had my first MS attack and MRI in 2004..recently lost my mom to cancer (unfortunately I hadn't heard of LDN) and that must've led to the relapse I had last month, that lasts till now.

I've been reading and researching a lot of forums about LDN, and I decided maybe it should be my drug of choice, since I'm a drug virgin that way....I saw my neurologist today and asked for a prescription, he refused to give it to me, he advised me instead on steroids and interferons....but to my surprise he know all about LDN, he said there's been no trials or evidence that this drug will work so as far as he's concerned he might as well prescribe me paracetamols, he even asked if the drug is working so well then why won't Naltrexone accept to go for a trial, because apparently he himself phoned and asked them if he can get permission to conduct a trial on the drug and they refused....I think he has a point..why are Naltrexone refusing to go onto trial for MS?

if anyone has the answer to this please let me know....

Thank you all and be brave....and it's not all in your head, as I recently found out....

Love.

.

For ideas on reducing your carbon footprint visit For Good this month.

[Guest guest]

,

You might want to ask who your doctor spoke with in trying to start a

trail. Exactly who refused? Did he call one of the drug companies

that market naltrexone? If he did contact one of them and they

refused did he ask for financial support. If so, no wonder they

refused. Financial support could come from a number of sources but

mostly it goes to clinicians or researchers who are well informed and

have a well designed plan for conducting a study. What plan did he

have??? You should ask!

Your doctor has no point to make at all. There are a number of trials

that have been conducted or in the process of being conducted

(although not all reported) and probably more in the planning stage.

At the Nashville conference I had a short chat with Jill , who

recently published a preliminary study on the use of LDN for Crohn's

disease. About 90% responded and about 2/3 went into remission (

JP. Am J Gastroenterol 2007;102:820–828). THAT'S INCREDIBLE!!!

Also, in my conversation with Jill I was rather pessimistic about the

potential for a drug company to seek approval for LDN - or more

specifically seek approval for another indication for naltrexone.

This is not uncommon of course. Two difference drug companies

received approval for two separate indications for epoetin alfa

(Epogen, Procrit). Why not naltrexone? I'm usually a hopeful person,

particularly when being persisent. However, when it comes to the FDA

approving a low cost medication that could potentially reduce drug

expenditures going to drug companies, I just couldn't see that

happening.

At any rate, Jill was quite positive on the prospects of a future FDA

approval for a second indication for naltrexone, that being a low

dose for Crohn's disease. Apparently, she had been in touch with one

of the drug companies currently manufacturing 50mg tablets of

naltrexone and their response was favorable. This is verrry good news

for everyone and I was waiting for a chance to share this news with

the list.

Elliot

>

> Hi all,

>

> I'm , 29 yr old female, had my first MS attack and MRI in

2004..recently lost my mom to cancer (unfortunately I hadn't heard of

LDN) and that must've led to the relapse I had last month, that lasts

till now.

>

> I've been reading and researching a lot of forums about LDN, and I

decided maybe it should be my drug of choice, since I'm a drug virgin

that way....I saw my neurologist today and asked for a prescription,

he refused to give it to me, he advised me instead on steroids and

interferons....but to my surprise he know all about LDN, he said

there's been no trials or evidence that this drug will work so as far

as he's concerned he might as well prescribe me paracetamols, he even

asked if the drug is working so well then why won't Naltrexone accept

to go for a trial, because apparently he himself phoned and asked

them if he can get permission to conduct a trial on the drug and they

refused....I think he has a point..why are Naltrexone refusing to go

onto trial for MS?

> if anyone has the answer to this please let me know....

>

> Thank you all and be brave....and it's not all in your head, as I

recently found out....

>

> Love.

> .

>

[Guest guest]

Jinan Rashid wrote:

"... I saw my neurologist today and ... he said there's been no trials

or evidence that this drug will work ... he even asked if the drug is

working so well then why won't Naltrexone accept to go for a trial,

because apparently he himself phoned and asked them if he can get

permission to conduct a trial on the drug and they refused....why are

Naltrexone refusing to go onto trial for MS? if anyone has the answer

to this please let me know....

Dear ,

I think there is more to the story, like your neuro wants financial

support from

the drug company to conduct an LDN trial. To conduct a trial himself,

all he

needs to do is prescribe LDN, track his patients' records, and write up

his results.

Then, if he wants, he can submit his results and apply for a grant for

further study,

even double blind and placebo controlled, and might get one. Dr. Jill

did

that for Crohn's patients and got a nice NIH grant based on her initial

results.

Her 2nd study, NIH funded, is about to start.

http://www.low dose naltrexone.org/ldn_trials.htm

Best health,

Jo

Jinan Rashid wrote:

Hi

all,

I'm

, 29 yr old female, had my first MS attack and MRI in

2004..recently lost my mom to cancer (unfortunately I hadn't heard of

LDN) and that must've led to the relapse I had last month, that lasts

till now. ... ....

..

[Guest guest]

LDN (Low Dose Naltrexone) is an Off Label Drug and Dr's prescribe Off Label Drugs everyday to all of us. Neurontin and Provigil are Off Label Drugs and the Dr's have no problems prescribing them Off Label.

Remeber you pay your Dr to work for you and if their not doing what you want because its your health and your choice then fire them and find someone that will prescribe the LDN or what you want.

Hugs & Blessings,

Crystal

LDN_Users Group Owner

Diagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 2 years on LDN with Skip's Pharmacy.....

Crystal's MS,TM & LDN Website

Crystal's LDN Gift Shop

Crystal's LDN Support Group

Skip's Compounding Pharmacy

MS & TM Spouse & Caregiver Support Group

Re: [low dose naltrexone] Newbie..why won't Naltrexone agree to have trials?

I find it very strange that a Neurologist would say that. The reason as I understand it, is that Naltrexone is a older drug that has lost it's patents, and since it can be made cheaply and sold in Generic form, why would any drug company spend the money for a trial and not be able to makes it money back on the product? Jinan Rashid <ginamoi (DOT) co.uk> wrote:

Hi all,

I'm , 29 yr old female, had my first MS attack and MRI in 2004..recently lost my mom to cancer (unfortunately I hadn't heard of LDN) and that must've led to the relapse I had last month, that lasts till now.

I've been reading and researching a lot of forums about LDN, and I decided maybe it should be my drug of choice, since I'm a drug virgin that way....I saw my neurologist today and asked for a prescription, he refused to give it to me, he advised me instead on steroids and interferons. ...but to my surprise he know all about LDN, he said there's been no trials or evidence that this drug will work so as far as he's concerned he might as well prescribe me paracetamols, he even asked if the drug is working so well then why won't Naltrexone accept to go for a trial, because apparently he himself phoned and asked them if he can get permission to conduct a trial on the drug and they refused....I think he has a point..why are Naltrexone refusing to go onto trial for MS?

if anyone has the answer to this please let me know....

Thank you all and be brave....and it's not all in your head, as I recently found out....

Love.

.

For ideas on reducing your carbon footprint visit For Good this month.

____________ _________ _________ _________ _________ __

[Guest guest]

HI ALETHA,WHEN YOU GET THE RESULTS FOR THE LDN TRIAL FOR MS CAN YOU SHARE THAT INFO.I WANT TO TELL YOU ALL I WAS DX WITH MS OCT 2006 I STARTED TAKING LDN 4.5 MGS IN APRIL 2007 I JUST WENT FOR AN MRI AND I HAVE NO MORE LESCIONS THEN WHAT I HAD A YEAR AGO SO I ASSUME THE LDN IS WORKING. ALL THE BEST D.J.

[low dose naltrexone] Newbie..why won't Naltrexone agree to have trials?

Hi all,

I'm , 29 yr old female, had my first MS attack and MRI in 2004..recently lost my mom to cancer (unfortunately I hadn't heard of LDN) and that must've led to the relapse I had last month, that lasts till now.

I've been reading and researching a lot of forums about LDN, and I decided maybe it should be my drug of choice, since I'm a drug virgin that way....I saw my neurologist today and asked for a prescription, he refused to give it to me, he advised me instead on steroids and interferons. ...but to my surprise he know all about LDN, he said there's been no trials or evidence that this drug will work so as far as he's concerned he might as well prescribe me paracetamols, he even asked if the drug is working so well then why won't Naltrexone accept to go for a trial, because apparently he himself phoned and asked them if he can get permission to conduct a trial on the drug and they refused....I think he has a point..why are Naltrexone refusing to go onto trial for MS?

if anyone has the answer to this please let me know....

Thank you all and be brave....and it's not all in your head, as I recently found out....

Love.

.

For ideas on reducing your carbon footprint visit For Good this month. __________________________________________________

[Guest guest]

I just heard about LDN last Wed. and went to the seminar last weekend. It was fantastic and I thank all for putting it on. I have dinner with my doctor next Thur. to get a script for LDN. She actually called me on Monday night to find out more about it. She wants to put a patient on it who is getting worse and I want to get on it as well. Keep you fingers crossed that I can supply her with the necessary information.

Question: Does LDN work for seizures? I have an girlfriend with advanced MS, she does not look at the internet and I want to give her information. I called her husband, who is a GP, and told him to look it up on the internet. I will send her a copy of the handout from last weekend too.

I have to leave for work but look forward to help on the seizure question. I hope it will help me with my right leg which has trouble moving properly.

After tonight I have to unsuscribe because I cannot get to all 70 emails each day. Thank you all.

--------- [low dose naltrexone] Newbie..why won't Naltrexone agree to have trials?

Hi all,

I'm , 29 yr old female, had my first MS attack and MRI in 2004..recently lost my mom to cancer (unfortunately I hadn't heard of LDN) and that must've led to the relapse I had last month, that lasts till now.

I've been reading and researching a lot of forums about LDN, and I decided maybe it should be my drug of choice, since I'm a drug virgin that way....I saw my neurologist today and asked for a prescription, he refused to give it to me, he advised me instead on steroids and interferons. ...but to my surprise he know all about LDN, he said there's been no trials or evidence that this drug will work so as far as he's concerned he might as well prescribe me paracetamols, he even asked if the drug is working so well then why won't Naltrexone accept to go for a trial, because apparently he himself phoned and asked them if he can get permission to conduct a trial on the drug and they refused....I think he has a point..why are Naltrexone refusing to go onto trial for MS?

if anyone has the answer to this please let me know....

Thank you all and be brave....and it's not all in your head, as I recently found out....

Love.

.

For ideas on reducing your carbon footprint visit For Good this month. __________________________________________________

[Guest guest]

Dear ,

I will be forwarding you a copy of the welcome e-mail, what not to take with LDN, what side effects that may occur and a trouble shooting guide in case one experiences problems with LDN. Please share them with your doctor and with your friend that does not have internet access.

All my best

Aletha

[low dose naltrexone] Newbie..why won't Naltrexone agree to have trials?

Hi all,

I'm , 29 yr old female, had my first MS attack and MRI in 2004..recently lost my mom to cancer (unfortunately I hadn't heard of LDN) and that must've led to the relapse I had last month, that lasts till now.

I've been reading and researching a lot of forums about LDN, and I decided maybe it should be my drug of choice, since I'm a drug virgin that way....I saw my neurologist today and asked for a prescription, he refused to give it to me, he advised me instead on steroids and interferons. ...but to my surprise he know all about LDN, he said there's been no trials or evidence that this drug will work so as far as he's concerned he might as well prescribe me paracetamols, he even asked if the drug is working so well then why won't Naltrexone accept to go for a trial, because apparently he himself phoned and asked them if he can get permission to conduct a trial on the drug and they refused....I think he has a point..why are Naltrexone refusing to go onto trial for MS?

if anyone has the answer to this please let me know....

Thank you all and be brave....and it's not all in your head, as I recently found out....

Love.

.

For ideas on reducing your carbon footprint visit For Good this month. __________________________________________________

[Guest guest]

DJ,

That is fantastic news. Skip asked us to let him know if there is any kind of study that we could think of for his students to conduct. I think some questioning on MRI's for MS would be an excellent question. It would be nice to know how many people are tracking their MRI's to see if there is any progression in that regard.

I am so happy for you. My husbands one lesion was no longer enhancing after 4 months of LDN. It has been over 2 years now since his last MRI.

All my best

Aletha

[low dose naltrexone] Newbie..why won't Naltrexone agree to have trials?

Hi all,

I'm , 29 yr old female, had my first MS attack and MRI in 2004..recently lost my mom to cancer (unfortunately I hadn't heard of LDN) and that must've led to the relapse I had last month, that lasts till now.

I've been reading and researching a lot of forums about LDN, and I decided maybe it should be my drug of choice, since I'm a drug virgin that way....I saw my neurologist today and asked for a prescription, he refused to give it to me, he advised me instead on steroids and interferons. ...but to my surprise he know all about LDN, he said there's been no trials or evidence that this drug will work so as far as he's concerned he might as well prescribe me paracetamols, he even asked if the drug is working so well then why won't Naltrexone accept to go for a trial, because apparently he himself phoned and asked them if he can get permission to conduct a trial on the drug and they refused....I think he has a point..why are Naltrexone refusing to go onto trial for MS?

if anyone has the answer to this please let me know....

Thank you all and be brave....and it's not all in your head, as I recently found out....

Love.

.

For ideas on reducing your carbon footprint visit For Good this month. __________________________________________________

[Guest guest]

Go here to modify your membership before unsubscribing:

low dose naltrexone/join

Art

--

> I just heard about LDN last Wed. and went to the seminar last

weekend. It was fantastic and I thank all for putting it on. I have

dinner with my doctor next Thur. to get a script for LDN. She

actually called me on Monday night to find out more about it. She

wants to put a patient on it who is getting worse and I want to get

on it as well. Keep you fingers crossed that I can supply her with

the necessary information.

>

> Question: Does LDN work for seizures? I have an girlfriend with

advanced MS, she does not look at the internet and I want to give her

information. I called her husband, who is a GP, and told him to

look it up on the internet. I will send her a copy of the handout

from last weekend too.

>

> I have to leave for work but look forward to help on the seizure

question. I hope it will help me with my right leg which has trouble

moving properly.

>

>

> After tonight I have to unsuscribe because I cannot get to all 70

emails each day. Thank you all.

>

[Guest guest]

Hi ,LDN is especially good at halting the progression of MS. It may or may not help with symptoms, as there are other considerations involved like diet, stress, and food allergies. For more information, visithttp://tinyurl.com/grpm9With best wishes,Dudley Delany

dudley_delanyFrom: ctobin10@...

Sent: Thursday, October 25, 2007 9:10 AM

low dose naltrexone , low dose naltrexone

Cc: don kirk

Subject: Re: [low dose naltrexone] Newbie..why won't Naltrexone agree to have trials?

I just heard about LDN last Wed. and went to the seminar last weekend. It was fantastic and I thank all for putting it on. I have dinner with my doctor next Thur. to get a script for LDN. She actually called me on Monday night to find out more about it. She wants to put a patient on it who is getting worse and I want to get on it as well. Keep you fingers crossed that I can supply her with the necessary information.

Question: Does LDN work for seizures? I have an girlfriend with advanced MS, she does not look at the internet and I want to give her information. I called her husband, who is a GP, and told him to look it up on the internet. I will send her a copy of the handout from last weekend too.

I have to leave for work but look forward to help on the seizure question. I hope it will help me with my right leg which has trouble moving properly.

After tonight I have to unsuscribe because I cannot get to all 70 emails each day. Thank you all.

--------- [low dose naltrexone] Newbie..why won't Naltrexone agree to have trials?

Hi all,

I'm , 29 yr old female, had my first MS attack and MRI in 2004..recently lost my mom to cancer (unfortunately I hadn't heard of LDN) and that must've led to the relapse I had last month, that lasts till now.

I've been reading and researching a lot of forums about LDN, and I decided maybe it should be my drug of choice, since I'm a drug virgin that way....I saw my neurologist today and asked for a prescription, he refused to give it to me, he advised me instead on steroids and interferons. ...but to my surprise he know all about LDN, he said there's been no trials or evidence that this drug will work so as far as he's concerned he might as well prescribe me paracetamols, he even asked if the drug is working so well then why won't Naltrexone accept to go for a trial, because apparently he himself phoned and asked them if he can get permission to conduct a trial on the drug and they refused....I think he has a point..why are Naltrexone refusing to go onto trial for MS?

if anyone has the answer to this please let me know....

Thank you all and be brave....and it's not all in your head, as I recently found out....

Love.

.

For ideas on reducing your carbon footprint visit For Good this month. __________________________________________________

[Guest guest]

Hi all and thank you for you replies and the wealth of information about those trials, I had no idea that a drug could just lose its patent, also I heard of trials in the process of being done but wasn't sure how long that was going to take.

Thanks to u all and your information on the subject I feel it all tells me that really I shouldn't let this sway me from trying the LDN, after all even my Neurologist couldn't give me any reasons not to except the fact that it's not proven to work, he said to go ahead and try it if I want just that he doesn't believe in it and therefore can't prescribe.

I will share the information u all sent me with my Neurologist next time I see him, but now I'm off to try and get my hands on the LDN myself, because as Kelli said "it couldn't harm a baby" .

in reply to Dudley Delany"P.S. Pardon my ignorance, but what are paracetemols?"

I meant paracetamol the pain killer, that doesn't actually do anything for the MS apart from help with some of the pain that comes with it.

Thanks again,

Love,

.

For ideas on reducing your carbon footprint visit For Good this month.