Re:More Latest News for May 2007

Subject: [low dose naltrexone]

Re:More " Latest News " for May 2007

This study

is wonderful news!! Is that " our " Dr. Pincus who is working on

the study? Please tell us more!!

Joyce

(working on taking 3.5 once a week and 3.0 the rest of the week in order to get

comfortable on 3.5 and see if I can trick my body into avoiding the stiffness

that discouraged my past attempts.)

See what's free at AOL.com.

June 5, 2007

Hi. Dr. Pincus here. We modeled our study

after the Penn State Crohn’s study, as an initial pilot. We have plans

in the works to alter parameters, depending upon what data we gather and the

funding support we generate. We didn’t exclude patients with regular immunosuppressant

medications, but did make exclusions for some. We would not have gotten IRB

approval had we only included patients without existing therapies, and,

anecdotal and other data does not suggest that concomitant immunosuppressant

use prevents LDN benefit. Our first step is a conservative one. Thanks for

asking. Best, Pincus

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Aletha Wittmann

Sent: Monday, May 28, 2007 2:13 PM

Subject: Re: [low dose naltrexone]

Re:More " Latest News " for May 2007

That is a short period of time. Also, what is the

criteria for taking other drugs while testing LDN? I am hoping this test

will be without immune suppressant meds being taken concurrently.

[low dose naltrexone] Re:More " Latest News " for May 2007

Since it is felt that it can take six

months (26 weeks) to see a benefit from LDN, I wonder why this study lasts for

only 16 weeks.

mjh

See what's free at AOL.com.

June 5, 2007

Hi! I met one of your friend's visiting their parents in Florida. We talked about the LDN study.

Does the name Levine ring a bell? Drop me a line one day if you get the chance. Best, Kathy

RE: [low dose naltrexone] Re:More "Latest News" for May 2007

I’m not sure who ‘our Dr. Pincus’ is, but I am Pincus here in Ohio and I am the one running the study. Am I ‘our’? Best, dp

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of DollsEsqaolSent: Sunday, May 27, 2007 11:28 PMlow dose naltrexone Subject: [low dose naltrexone] Re:More "Latest News" for May 2007

This study is wonderful news!! Is that "our" Dr. Pincus who is working on the study? Please tell us more!!

Joyce (working on taking 3.5 once a week and 3.0 the rest of the week in order to get comfortable on 3.5 and see if I can trick my body into avoiding the stiffness that discouraged my past attempts.)

See what's free at AOL.com.

June 6, 2007

> anecdotal and other data

> does not suggest that concomitant immunosuppressant use prevents LDN

> benefit.

,

This is very exciting that you are doing a study. I'm one of the

annecdotes you mention, but thanks to your work annecdotes can now

become data points!

I happen to agree that LDN can still produce good results even if other

therapies are in use, because I saw immediate relief myself when I

started LDN, even thought I continued Avonex for 2 months, until it was

just so obvious the LDN was working, like I put down the cane I'd been

using for a year, and cancelled the wheelchair that was on order.

Because of IRB's and FDA etc etc researchers will of course have to be

practical and work around restrictions to get this research off the

ground, but now that Dr Gluck has gotten the first NIH meeting, and NIH

has already funded the follow-on Crohn's study for $500k, I think the

LDN research snowball will grow large quickly.

SammyJo

http://LDNers.org

June 6, 2007

Hi Dr. Pincus---I thought you might be a member of " our group " and I

am glad to see that you are!! Thank you so much for running this

study--will you be able to tell us a little more and let us know how

it is progressing. I was so excited to hear about the study. Too

many of our doctors are loathe to prescribe LDN or to credit it with

helping us. And the answer we always hear is. " Well, there haven't

been any studies! "

I have been on LDN 3.0 for 16 months now. I did get relief from a

number of awful symptoms almost immediately, and they have not come

back. My walking and balance have not improved so I need a walker or

a scooter. However, I am able to continue working full time as an

attorney so I can't really complain.

I am lucky enough to be a patient of Apatoff here in NYC and he

gave me my prescription when I asked him for it. I just wish that

more people with MS were able to try LDN in the same enlightened and

medically supervised way that I am. Maybe after studies like yours

that wish will come true.

Anyway, I wanted you to know how much your work is appreciated; and I

wish you (and all of us!)the best of luck.

Joyce

-- In low dose naltrexone , " david pincus "

<dpincus216@...> wrote:

>

> I'm not sure who 'our Dr. Pincus' is, but I am Pincus here in

Ohio and

> I am the one running the study. Am I 'our'? Best, dp

>

> _____

>

> [mailto:low dose naltrexone ] On Behalf Of DollsEsq@...

> Sent: Sunday, May 27, 2007 11:28 PM

> Subject: [low dose naltrexone] Re:More " Latest News " for May 2007

>

> This study is wonderful news!! Is that " our " Dr. Pincus who is

working on

> the study? Please tell us more!!

>

> Joyce (working on taking 3.5 once a week and 3.0 the rest of the

week in

> order to get comfortable on 3.5 and see if I can trick my body into

avoiding

> the stiffness that discouraged my past attempts.)

>

> _____

>

> See what's free at AOL.com <http://www.aol.com?

ncid=AOLAOF00020000000503> .

>

June 6, 2007

I was diagnosed with RR MS apprx 6 years ago. I started on LDN

04/15/04. I started on 3mg and felt positive effects within 3 days. I

did increase my dosage to 4mg about a year ago and have had a lot of

muscle pain. I am currently awaiting a refill for 3mg and I am sure

this will help with my symptons.

Also, on the LDNINFO.org website it states if you can not get your

doctor to write you a RX that with documentation showing a positive MS

result you can get the RX through Dr. Bahri. From personal experience

it is easier to get your primary care physicians to give you the Rx

over your Neuro.

June 6, 2007

I should be starting ldn by weeks end. I already have pain and muscle problems. I assume it would be best to go right to 3.0 mg and stay there. I was hoping I would get some relief from the muscle pain. I will let the group know what happens.

Annie

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of KimSent: Tuesday, June 05, 2007 8:19 PMlow dose naltrexone Subject: [low dose naltrexone] Re:More "Latest News" for May 2007

I was diagnosed with RR MS apprx 6 years ago. I started on LDN 04/15/04. I started on 3mg and felt positive effects within 3 days. I did increase my dosage to 4mg about a year ago and have had a lot of muscle pain. I am currently awaiting a refill for 3mg and I am sure this will help with my symptons. Also, on the LDNINFO.org website it states if you can not get your doctor to write you a RX that with documentation showing a positive MS result you can get the RX through Dr. Bahri. From personal experience it is easier to get your primary care physicians to give you the Rx over your Neuro.

June 6, 2007

Annie, great news hope all goes well for you! When I started, It was

2.5mg,3.5mg and

finally 4.5mg which is the dose I currently take. I took each dose for a month.

Just

curious why you would jump in at three and then you plan to just stay at that

dose?

>

> I should be starting ldn by weeks end. I already have pain and muscle

> problems. I assume it would be best to go right to 3.0 mg and stay there.

> I was hoping I would get some relief from the muscle pain. I will let the

> group know what happens.

> Annie

>

> _____

>

> [mailto:low dose naltrexone ] On Behalf Of Kim

> Sent: Tuesday, June 05, 2007 8:19 PM

> Subject: [low dose naltrexone] Re:More " Latest News " for May 2007

>

> I was diagnosed with RR MS apprx 6 years ago. I started on LDN

> 04/15/04. I started on 3mg and felt positive effects within 3 days. I

> did increase my dosage to 4mg about a year ago and have had a lot of

> muscle pain. I am currently awaiting a refill for 3mg and I am sure

> this will help with my symptons.

>

> Also, on the LDNINFO.org website it states if you can not get your

> doctor to write you a RX that with documentation showing a positive MS

> result you can get the RX through Dr. Bahri. From personal experience

> it is easier to get your primary care physicians to give you the Rx

> over your Neuro.

>

June 6, 2007

Annie, great news hope all goes well for you! When I started, It was

2.5mg,3.5mg and

finally 4.5mg which is the dose I currently take. I took each dose for a month.

Just

curious why you would jump in at three and then you plan to just stay at that

dose?

>

> I should be starting ldn by weeks end. I already have pain and muscle

> problems. I assume it would be best to go right to 3.0 mg and stay there.

> I was hoping I would get some relief from the muscle pain. I will let the

> group know what happens.

> Annie

>

> _____

>

> [mailto:low dose naltrexone ] On Behalf Of Kim

> Sent: Tuesday, June 05, 2007 8:19 PM

http://ldn.proboards3.com/index.cgi?

> Subject: [low dose naltrexone] Re:More " Latest News " for May 2007

>

> I was diagnosed with RR MS apprx 6 years ago. I started on LDN

> 04/15/04. I started on 3mg and felt positive effects within 3 days. I

> did increase my dosage to 4mg about a year ago and have had a lot of

> muscle pain. I am currently awaiting a refill for 3mg and I am sure

> this will help with my symptons.

>

> Also, on the LDNINFO.org website it states if you can not get your

> doctor to write you a RX that with documentation showing a positive MS

> result you can get the RX through Dr. Bahri. From personal experience

> it is easier to get your primary care physicians to give you the Rx

> over your Neuro.

>

June 6, 2007

I have been reading everything on this site for at least 2 weeks. The only people I trust for the truth anymore are the people who are nearest to my experience with this monster. Someone else with lots of muscle pain and stiffness said the 3.0 was the magic # for them. I can't imagine the stiffness becoming worse. I would be like the comedianne Blue only without Parkinsons and without the jokes!

I'm not surprised that one of the ladies I met in an MS group (sponsored by the NMSS) faxed everyone something on a talk about how coffee effects people. I get all info about new updates from the society via faxes from team leaders from both groups. Reading them now, I realize how they keep you hooked with hope, with all the stories. Isn't that ancedotal? I told this lady about LDN at least a week ago, I assumed she would at least check it out. I guess she isn't quite sick enough yet to look at something outside the NMSS. I can't wait until June 29th to see the movie Sicko. I watched Oprah yesterday to see the preview with the creator of the movie. I hope this movie gets everyone to see the real truth, not just people with disease.

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of jupitersb52Sent: Wednesday, June 06, 2007 6:25 AMlow dose naltrexone Subject: [low dose naltrexone] Re:More "Latest News" for May 2007

Annie, great news hope all goes well for you! When I started, It was 2.5mg,3.5mg and finally 4.5mg which is the dose I currently take. I took each dose for a month. Just curious why you would jump in at three and then you plan to just stay at that dose? >> I should be starting ldn by weeks end. I already have pain and muscle> problems. I assume it would be best to go right to 3.0 mg and stay there.> I was hoping I would get some relief from the muscle pain. I will let the> group know what happens.> Annie> > _____ > > From: low dose naltrexone > [mailto:low dose naltrexone ] On Behalf Of Kim> Sent: Tuesday, June 05, 2007 8:19 PM> low dose naltrexone > Subject: [low dose naltrexone] Re:More "Latest News" for May 2007> > > > I was diagnosed with RR MS apprx 6 years ago. I started on LDN > 04/15/04. I started on 3mg and felt positive effects within 3 days. I > did increase my dosage to 4mg about a year ago and have had a lot of > muscle pain. I am currently awaiting a refill for 3mg and I am sure > this will help with my symptons. > > Also, on the LDNINFO.org website it states if you can not get your > doctor to write you a RX that with documentation showing a positive MS > result you can get the RX through Dr. Bahri. From personal experience > it is easier to get your primary care physicians to give you the Rx > over your Neuro.>

June 6, 2007

> >

> > I should be starting ldn by weeks end. I already have pain and

muscle

> > problems. I assume it would be best to go right to 3.0 mg and stay

there.

> > I was hoping I would get some relief from the muscle pain. I will

let the

> > group know what happens.

> > Annie

==========

Annie,

Not everyone gets relief from pain on LDN but many do, especially the

MS hug pain.

You can follow my before and after story with LDN in the link below, I

was in excruciating pain when I started LDN. The MS hug(MS TORTURE

CHAMBER as I call it) was so bad I was suicidal. I've been on LDN 4

years and it's the best decision I could have ever made. My mom's on

it for breast cancer 3 years and my grandma's on it for cancer and

advanced Alzheimer's 2 years. We are all doing great.

If the first link does not post correctly then click on the link below

it.

Low Dose Naltrexone Forum - My before LDN & after LDN story

board=personal & action=display & thread=1079136805

Click on link below, scroll past the little google ad box and click on

first post about my before and after LDN stories.

Low Dose Naltrexone Forum - Your Personal LDN Stories & Updates

http://ldn.proboards3.com/index.cgi?board=personal

June 6, 2007

Annie

I had some spacisity issues, but they have gotten better with the

LDN. I'll have to check out this movie you are speaking of, not

familiar with it. Look forward to hear how you do with the LDN.

(probably not as much as you do!)

Best wishes, be well.

> >

> > I should be starting ldn by weeks end. I already have pain and

muscle

> > problems. I assume it would be best to go right to 3.0 mg and

stay there.

> > I was hoping I would get some relief from the muscle pain. I

will let the

> > group know what happens.

> > Annie

> >

> > _____

> >

> > From: low dose naltrexone@ <mailto:low dose naltrexone%

40>

>

> > [mailto:low dose naltrexone@ <mailto:low dose naltrexone%

40>

> ] On Behalf Of Kim

> > Sent: Tuesday, June 05, 2007 8:19 PM

> > low dose naltrexone@ <mailto:low dose naltrexone%

40>

>

> > Subject: [low dose naltrexone] Re:More " Latest News " for May 2007

> >

> > I was diagnosed with RR MS apprx 6 years ago. I started on LDN

> > 04/15/04. I started on 3mg and felt positive effects within 3

days. I

> > did increase my dosage to 4mg about a year ago and have had a

lot of

> > muscle pain. I am currently awaiting a refill for 3mg and I am

sure

> > this will help with my symptons.

> >

> > Also, on the LDNINFO.org website it states if you can not get

your

> > doctor to write you a RX that with documentation showing a

positive MS

> > result you can get the RX through Dr. Bahri. From personal

experience

> > it is easier to get your primary care physicians to give you the

Rx

> > over your Neuro.

> >

>

June 6, 2007

Thanks for your well wishes. The movie sicko is coming out in the US June 29th. It will open up the eyes of people thinking we are protected by our medical system. Knowledge is Power

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of jupitersb52Sent: Wednesday, June 06, 2007 1:20 PMlow dose naltrexone Subject: [low dose naltrexone] Re:More "Latest News" for May 2007

AnnieI had some spacisity issues, but they have gotten better with the LDN. I'll have to check out this movie you are speaking of, not familiar with it. Look forward to hear how you do with the LDN. (probably not as much as you do!)Best wishes, be well.> >> > I should be starting ldn by weeks end. I already have pain and muscle> > problems. I assume it would be best to go right to 3.0 mg and stay there.> > I was hoping I would get some relief from the muscle pain. I will let the> > group know what happens.> > Annie> > > > _____ > > > > From: low dose naltrexone@ <mailto:low dose naltrexone%40>> > > [mailto:low dose naltrexone@ <mailto:low dose naltrexone%40>> ] On Behalf Of Kim> > Sent: Tuesday, June 05, 2007 8:19 PM> > low dose naltrexone@ <mailto:low dose naltrexone%40>> > > Subject: [low dose naltrexone] Re:More "Latest News" for May 2007> > > > > > > > I was diagnosed with RR MS apprx 6 years ago. I started on LDN > > 04/15/04. I started on 3mg and felt positive effects within 3 days. I > > did increase my dosage to 4mg about a year ago and have had a lot of > > muscle pain. I am currently awaiting a refill for 3mg and I am sure > > this will help with my symptons. > > > > Also, on the LDNINFO.org website it states if you can not get your > > doctor to write you a RX that with documentation showing a positive MS > > result you can get the RX through Dr. Bahri. From personal experience > > it is easier to get your primary care physicians to give you the Rx > > over your Neuro.> >>

June 6, 2007

I read about someone having problems with spasity and started at 3.0 and is happy at that dose. I won't be afraid to go to 4.5. Everyone is so different.

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of BrenSent: Wednesday, June 06, 2007 10:08 AMlow dose naltrexone Subject: [low dose naltrexone] Re:More "Latest News" for May 2007

> >> > I should be starting ldn by weeks end. I already have pain and muscle> > problems. I assume it would be best to go right to 3.0 mg and stay there.> > I was hoping I would get some relief from the muscle pain. I will let the> > group know what happens.> > Annie==========Annie,Not everyone gets relief from pain on LDN but many do, especially the MS hug pain.You can follow my before and after story with LDN in the link below, I was in excruciating pain when I started LDN. The MS hug(MS TORTURE CHAMBER as I call it) was so bad I was suicidal. I've been on LDN 4 years and it's the best decision I could have ever made. My mom's on it for breast cancer 3 years and my grandma's on it for cancer and advanced Alzheimer's 2 years. We are all doing great.If the first link does not post correctly then click on the link below it.Low Dose Naltrexone Forum - My before LDN & after LDN storyhttp://ldn.proboards3.com/index.cgi?board=personal & action=display & thread=1079136805Click on link below, scroll past the little google ad box and click on first post about my before and after LDN stories. Low Dose Naltrexone Forum - Your Personal LDN Stories & Updateshttp://ldn.proboards3.com/index.cgi?board=personal

June 7, 2007

Hi Ann,

A truer word couldn't have been

spoken......although I hope you trust us on-line in this group !!!!??

I had a call this morning from my MS Society

Liaison person to do a welcome spile and get some detail about me......she

was absolutely lovely however her tone slightly changed when she asked what treatment

I was on.....after telling her I'd stopped my Reif and started LDN....she

proceeded to tell me how much info from the internet is wrong, etc....I

didn't expect overwhelming excitement, or support but it still shocked me....so

I agree again Ann.....!!

Until something better comes along I'm

sticking to my little white pill each night....

BTW - what is this movie Sicko...you're

obviously in the US (??) although we do get Oprah daily on our cable network

(behind a bit though!)

Kelli (AUSTRALIA)

From:

Ann Cherry [mailto:aberries@...]

Sent: Wednesday, 6 June 2007 10:01

PM

To:

Subject: RE: [low dose naltrexone]

Re:More " Latest News " for May 2007

I have been reading everything on this

site for at least 2 weeks. The only people I trust for the truth anymore

are the people who are nearest to my experience with this monster.

Someone else with lots of muscle pain and stiffness said the 3.0 was the magic

# for them. I can't imagine the stiffness becoming worse. I would

be like the comedianne Blue only without Parkinsons and without the jokes!

I'm not surprised that one of the ladies I

met in an MS group (sponsored by the NMSS) faxed everyone something on a talk

about how coffee effects people. I get all info about new updates from

the society via faxes from team leaders from both groups. Reading them

now, I realize how they keep you hooked with hope, with all the stories.

Isn't that ancedotal? I told this lady about LDN at least a week

ago, I assumed she would at least check it out. I guess she isn't

quite sick enough yet to look at something outside the NMSS. I can't wait

until June 29th to see the movie Sicko. I watched Oprah yesterday to see

the preview with the creator of the movie. I hope this movie gets

everyone to see the real truth, not just people with disease.

From:

low dose naltrexone [mailto:low dose naltrexone ]

On Behalf Of jupitersb52

Sent: Wednesday, June 06, 2007

6:25 AM

Subject: [low dose naltrexone]

Re:More " Latest News " for May 2007

Annie, great news hope all goes well for you! When I

started, It was 2.5mg,3.5mg and

finally 4.5mg which is the dose I currently take. I took each dose for a month.

Just

curious why you would jump in at three and then you plan to just stay at that

dose?

>

> I should be starting ldn by weeks end. I already have pain and muscle

> problems. I assume it would be best to go right to 3.0 mg and stay there.

> I was hoping I would get some relief from the muscle pain. I will let the

> group know what happens.

> Annie

>

> _____

>

> [mailto:low dose naltrexone ]

On Behalf Of Kim

> Sent: Tuesday, June 05, 2007 8:19 PM