Tried to help the Crohns and UC....but was censored off !

March 10, 2010

Well one Marna, I think you’ll find you’re not alone in these

false accusations and I for one tried on the same forums and was not

allowed to mention LDN etc. Oh well, at least we keep putting the word out

there an like you, I also chose to leave.

Thanks for sending this, whilst I know it hurts, the three

letter word is out there. Some will look it up and take note, some won’t so as

far as I can see a job well done.

Best,

Jayne Crocker

Chairperson

www.LDNNow.com

Important! Please sign our LDN petition to the

European Parliament by clicking here

tel: +44 (0) 7877 492 669

Dr Steele MBE, talking about LDN

LDNNow, a patient and friend led organisation (so not a charity)

with no funding and no affiliation to any company or organisation, but rather a

group of concerned individuals focussed on improving the health of those who

suffer from the many diseases and conditions that LDN treats.

From: low dose naltrexone

[mailto:low dose naltrexone ] On Behalf Of moranclan07

Sent: 09 March 2010 20:55

low dose naltrexone

Subject: [low dose naltrexone] Tried to help the Crohns and UC....but was

censored off !

Well, I posted this same email to the Crohn's

and Ulcerative Colitis . Was quickly told I was a bad mother...they

felt sorry for my poor child. What I was doing was dangerous. Not working

directly with a doctor ( which I did by phone consult ) ,,,was just horrible

and how sorry they felt for my " poor " son.

>

> They compared LDN, and LDA, to LSD....that I was giving to my son. Did not

take note that my son had a beautiful healthy biopsy and the doctors want to

learn from me now.

>

> So I was censored,,,,talked terrible to,,,and soon realized that even

though I gave them the medical links to back up what I had done.....

>

> Had to take myself off their support group. Also I never emailed

them, other than the post to all. But they tore me appart like wild dogs.

>

> I have been doing this since my son was 1 years old,,he is now 15.

Probiotics, LDN and IV glutathione have been the best thing that ever happened

to him. Did one doctor know what these were. NO. But they want to know now.

>

> Also I have a BSN, RN, IBCLC degree and it is in my nature to help other's

if I have found something that works. I never went on their site until I had

the year long use of LDN and the beautiful color photo of an LDN colon.

>

> In addition they said that I sounded like an advertisement and money is

the root of all evil...how sickening it was.

>

> Now LDN is funded by patients.....and at 30 dollars a month compared to

2,000 dollar Remicade infusions.....how could they insinuate that I was trying

to make money off a pill that is FDA approved and costs 20 cents to make ?

>

> One word. IDIOTS.

>

> I am off their site by choice as I soon learned they had no medical

science to teach me.

>

> But I told them to remember my name when LDN is the first thing their child

is offeres !

>

> MARNA

March 10, 2010

You are in good company. We who have used LDN for quite awhile have experienced

the same reception in other health-related groups. Wear their scorn as a badge

of honor. It is they who will lose out on a good thing by not at least trying

LDN.

Art

People who will not help themselves are not worth saving -- from anything. Be

glad when they are consumed by their own folly.

>

> Well, I posted this same email to the Crohn's and Ulcerative Colitis

groups. Was quickly told I was a bad mother...they felt sorry for my poor child.

What I was doing was dangerous. Not working directly with a doctor ( which I did

by phone consult ) ,,,was just horrible and how sorry they felt for my " poor "

son.

> >

> > They compared LDN, and LDA, to LSD....that I was giving to my son. Did not

take note that my son had a beautiful healthy biopsy and the doctors want to

learn from me now.

> >

> > So I was censored,,,,talked terrible to,,,and soon realized that even

though I gave them the medical links to back up what I had done.....

> >

> > Had to take myself off their support group. Also I never emailed them,

other than the post to all. But they tore me appart like wild dogs.

> >

> > I have been doing this since my son was 1 years old,,he is now 15.

Probiotics, LDN and IV glutathione have been the best thing that ever happened

to him. Did one doctor know what these were. NO. But they want to know now.

> >

> > Also I have a BSN, RN, IBCLC degree and it is in my nature to help other's

if I have found something that works. I never went on their site until I had the

year long use of LDN and the beautiful color photo of an LDN colon.

> >

> > In addition they said that I sounded like an advertisement and money is the

root of all evil...how sickening it was.

> >

> > Now LDN is funded by patients.....and at 30 dollars a month compared to

2,000 dollar Remicade infusions.....how could they insinuate that I was trying

to make money off a pill that is FDA approved and costs 20 cents to make ?

> >

> > One word. IDIOTS.

> >

> > I am off their site by choice as I soon learned they had no medical science

to teach me.

> >

> > But I told them to remember my name when LDN is the first thing their child

is offeres !

> >

> > MARNA

>

March 10, 2010

----- Forwarded Message ----From: wro <wro130@...>art_ldn <rtee54@...>Sent: Tue, March 9, 2010 10:27:25 PMSubject: Re: [low dose naltrexone] Re: Tried to help the Crohns and UC....but was censored off !

better to be off their site! I hope I do not get any flack by what I am about to say, but I am going to say it.....

there are people who like being victims!!!!!!!!!!!

Some people talk about crohns as if it is their friend! I have crohns, I have fought cancer not once but a few times brain tumors, breast cancer, thyroid cancer I have had seizures since birth......I am taking LDN i had to re-start it due to some surgery I had to have...but for the 2 months I was on it prior to the surgery, I NEVER FELT BETTER! Some people do not want to get better...they enjoy the "victim" status...I choose not so I will try anything that will make me feel better, LDN makes me feel better, so I will continue taking it & I will continue to praise the benefits! Those who don't

want to use the knowldge don't have to ! but they will not or cannot stop me from telling my story!

I so ENJOYED your story continue to tell it............it helps maybe not everyone but if it helps some1 thats what matters!\\Best of continued great health to you & your family!

gretchen

From: art_ldn <rtee54@...>low dose naltrexone Sent: Tue, March 9, 2010 10:02:59 PMSubject: [low dose naltrexone] Re: Tried to help the Crohns and UC....but was censored off !

You are in good company. We who have used LDN for quite awhile have experienced the same reception in other health-related groups. Wear their scorn as a badge of honor. It is they who will lose out on a good thing by not at least trying LDN.ArtPeople who will not help themselves are not worth saving -- from anything. Be glad when they are consumed by their own folly.>> Well, I posted this same email to the Crohn's and Ulcerative Colitis . Was quickly told I was a bad mother...they felt sorry for my poor child. What I was doing was dangerous. Not working directly with a doctor ( which I did by phone consult ) ,,,was just horrible and how sorry they felt for my "poor" son.>

> > > They compared LDN, and LDA, to LSD....that I was giving to my son. Did not take note that my son had a beautiful healthy biopsy and the doctors want to learn from me now.> > > > So I was censored,,,, talked terrible to,,,and soon realized that even though I gave them the medical links to back up what I had done.....> > > > Had to take myself off their support group. Also I never emailed them, other than the post to all. But they tore me appart like wild dogs.> > > > I have been doing this since my son was 1 years old,,he is now 15. Probiotics, LDN and IV glutathione have been the best thing that ever happened to him. Did one doctor know what these were. NO. But they want to know now.> > > > Also I have a BSN, RN, IBCLC degree and it is in my nature to help other's if I have found something that works. I never went on their site until I had the year

long use of LDN and the beautiful color photo of an LDN colon.> > > > In addition they said that I sounded like an advertisement and money is the root of all evil...how sickening it was.> > > > Now LDN is funded by patients.... .and at 30 dollars a month compared to 2,000 dollar Remicade infusions... ..how could they insinuate that I was trying to make money off a pill that is FDA approved and costs 20 cents to make ?> > > > One word. IDIOTS.> > > > I am off their site by choice as I soon learned they had no medical science to teach me.> > > > But I told them to remember my name when LDN is the first thing their child is offeres !> > > > MARNA>

March 10, 2010

Welcome to my world. I have been dispensing LDN now for over 10 years. 10 years ago there were very few MD's who would prescribe LDN. I was abused over the phone: "How dare you tell my patients that LDN works", " Stop practicing medicine" , "Snake oil" on and on. The professional listservs were also replete with the same sort of crap. Then slowly things began to change. We now have over 8000 docs who have prescribed LDN for AIDS to Herpes Zoster. The problem, which I can say I identified in 2006, is that this drug will be overused for things that makes no sense, and that it will be identified with Snake oil.

Prior to owning this pharmacy, I owned a pharmacy that primarily compounded TPN for IBD patients. The sad thing was the only thing these folks had to look forward too was slowly loosing pieces of their bowel. Now we have a drug that works for the vast majority of patients, and it has been studied. So take heart that you are providing, imho, the best IBD drug there is: Low cost, readily available, effective, and low amount of side effects. As a nurse you will know what I am talking about.

Bottom line for me, if it were my kid, they would be on LDN.

Dr.Skip

March 10, 2010

My experience is very similar on a number of health based websites on many subjects. My recommendation is don't withdraw from posting on these sites. Consider these points-1.If it is a site where it shows the number of views and the number of comments you can see across the board that maybe 100 people view it and maybe 5 make comments. Often they are attacks. Remember 95% of people have viewed and many people don't want the aggravation of being attacked and just watch and listen. If only a small number explore it and start LDN then the message has been heard. If you don't post the message will never get outside of this believing LDN group.2.Put your message as simply as possible and links to sources that cannot be disputed eg

Universities such as the Penn State profiles of Prof Past President of the American Pancreas Association and Prof Zagon. Link to the research website Clinicaltrials.gov or other universities. By doing this they cannot dispute its validity. As I say this shows that it is not "injecting chicken stem cells in a shed in China"3. If they do dispute it don't enter into the dispute with multiple posts. Just leave it. In coming days maybe respond saying the facts again and leave it. People who want to find it will find it perhaps put a new post after say 4 weeks with different angle. Say post the link to the book The Promise of Low Dose Naltrexone. Some people may make comments about commercialisation etc. But this time maybe 500 view the post and 20 buy the book and 5 go on LDN.4. Don't do multiple posts responding in an aggresive way. If it is low key and even if complaints are made to administrators

they will probably let the post stand. If it is a slinging match with bad comments they may close it down. Stay low key and the message will seep out.5. Don't oversell stick to the facts and curiosity will do the rest for those who are open minded to try it. Remember your going to have to be committed to try this anyway and someone who is a doubter is never going to even go to another website to check it out unless it is to bring it down. Be more subtle.If you don't post them the small number of complainers win and all those that do read these posts and need LDN will never know.I'll give an example of a post I've done (hey I may not be right on this stuff) but I have learned how not to get kicked off sites and hundreds of people are viewing my posts and I do not care about the naysayers. If I care about what they think they win. Small ever increasing numbers of LDN advocates

from using it will eventually turn into a flood. If you just post here that will never happen CheersHere is a link to Children with Diabetes - 56 views not one comment ( that is better than in the past when I have been called a Snake Oil Salesman. I'm still posting.From: art_ldn <rtee54@...>low dose naltrexone Sent: Wed, 10 March, 2010 3:02:59 PMSubject: [low dose naltrexone] Re: Tried to help the

Crohns and UC....but was censored off !

You are in good company. We who have used LDN for quite awhile have experienced the same reception in other health-related groups. Wear their scorn as a badge of honor. It is they who will lose out on a good thing by not at least trying LDN.

Art

People who will not help themselves are not worth saving -- from anything. Be glad when they are consumed by their own folly.

>

> Well, I posted this same email to the Crohn's and Ulcerative Colitis . Was quickly told I was a bad mother...they felt sorry for my poor child. What I was doing was dangerous. Not working directly with a doctor ( which I did by phone consult ) ,,,was just horrible and how sorry they felt for my "poor" son.

> >

> > They compared LDN, and LDA, to LSD....that I was giving to my son. Did not take note that my son had a beautiful healthy biopsy and the doctors want to learn from me now.

> >

> > So I was censored,,,, talked terrible to,,,and soon realized that even though I gave them the medical links to back up what I had done.....

> >

> > Had to take myself off their support group. Also I never emailed them, other than the post to all. But they tore me appart like wild dogs.

> >

> > I have been doing this since my son was 1 years old,,he is now 15. Probiotics, LDN and IV glutathione have been the best thing that ever happened to him. Did one doctor know what these were. NO. But they want to know now.

> >

> > Also I have a BSN, RN, IBCLC degree and it is in my nature to help other's if I have found something that works. I never went on their site until I had the year long use of LDN and the beautiful color photo of an LDN colon.

> >

> > In addition they said that I sounded like an advertisement and money is the root of all evil...how sickening it was.

> >

> > Now LDN is funded by patients.... .and at 30 dollars a month compared to 2,000 dollar Remicade infusions... ..how could they insinuate that I was trying to make money off a pill that is FDA approved and costs 20 cents to make ?

> >

> > One word. IDIOTS.

> >

> > I am off their site by choice as I soon learned they had no medical science to teach me.

> >

> > But I told them to remember my name when LDN is the first thing their child is offeres !

> >

> > MARNA

>

March 10, 2010

Here's linkhttp://forums.childrenwithdiabetes.com/showthread.php?t=51012From: Yates <peteryates@...>art_ldn <rtee54@...>; low dose naltrexone Sent: Wed, 10 March, 2010 11:11:24

PMSubject: Re: [low dose naltrexone] Re: Tried to help the Crohns and UC....but was censored off !

My experience is very similar on a number of health based websites on many subjects. My recommendation is don't withdraw from posting on these sites. Consider these points-1.If it is a site where it shows the number of views and the number of comments you can see across the board that maybe 100 people view it and maybe 5 make comments. Often they are attacks. Remember 95% of people have viewed and many people don't want the aggravation of being attacked and just watch and listen. If only a small number explore it and start LDN then the message has been heard. If you don't post the message will never get outside of this believing LDN group.2.Put your message as simply as possible and links to sources that cannot be disputed eg

Universities such as the Penn State profiles of Prof Past President of the American Pancreas Association and Prof Zagon. Link to the research website Clinicaltrials. gov or other universities. By doing this they cannot dispute its validity. As I say this shows that it is not "injecting chicken stem cells in a shed in China"3. If they do dispute it don't enter into the dispute with multiple posts. Just leave it. In coming days maybe respond saying the facts again and leave it. People who want to find it will find it perhaps put a new post after say 4 weeks with different angle. Say post the link to the book The Promise of Low Dose Naltrexone. Some people may make comments about commercialisation etc. But this time maybe 500 view the post and 20 buy the book and 5 go on LDN.4. Don't do multiple posts responding in an aggresive way. If it is low key and even if complaints are made to administrators

they will probably let the post stand. If it is a slinging match with bad comments they may close it down. Stay low key and the message will seep out.5. Don't oversell stick to the facts and curiosity will do the rest for those who are open minded to try it. Remember your going to have to be committed to try this anyway and someone who is a doubter is never going to even go to another website to check it out unless it is to bring it down. Be more subtle.If you don't post them the small number of complainers win and all those that do read these posts and need LDN will never know.I'll give an example of a post I've done (hey I may not be right on this stuff) but I have learned how not to get kicked off sites and hundreds of people are viewing my posts and I do not care about the naysayers. If I care about what they think they win. Small ever increasing numbers of LDN advocates

from using it will eventually turn into a flood. If you just post here that will never happen CheersHere is a link to Children with Diabetes - 56 views not one comment ( that is better than in the past when I have been called a Snake Oil Salesman. I'm still posting.From: art_ldn <rtee54 (DOT) com>low dose naltrexoneSent: Wed, 10 March, 2010 3:02:59 PMSubject: [low dose naltrexone] Re: Tried to help the

Crohns and UC....but was censored off !

You are in good company. We who have used LDN for quite awhile have experienced the same reception in other health-related groups. Wear their scorn as a badge of honor. It is they who will lose out on a good thing by not at least trying LDN.

Art

People who will not help themselves are not worth saving -- from anything. Be glad when they are consumed by their own folly.

>

> Well, I posted this same email to the Crohn's and Ulcerative Colitis . Was quickly told I was a bad mother...they felt sorry for my poor child. What I was doing was dangerous. Not working directly with a doctor ( which I did by phone consult ) ,,,was just horrible and how sorry they felt for my "poor" son.

> >

> > They compared LDN, and LDA, to LSD....that I was giving to my son. Did not take note that my son had a beautiful healthy biopsy and the doctors want to learn from me now.

> >

> > So I was censored,,,, talked terrible to,,,and soon realized that even though I gave them the medical links to back up what I had done.....

> >

> > Had to take myself off their support group. Also I never emailed them, other than the post to all. But they tore me appart like wild dogs.

> >

> > I have been doing this since my son was 1 years old,,he is now 15. Probiotics, LDN and IV glutathione have been the best thing that ever happened to him. Did one doctor know what these were. NO. But they want to know now.

> >

> > Also I have a BSN, RN, IBCLC degree and it is in my nature to help other's if I have found something that works. I never went on their site until I had the year long use of LDN and the beautiful color photo of an LDN colon.

> >

> > In addition they said that I sounded like an advertisement and money is the root of all evil...how sickening it was.

> >

> > Now LDN is funded by patients.... .and at 30 dollars a month compared to 2,000 dollar Remicade infusions... ..how could they insinuate that I was trying to make money off a pill that is FDA approved and costs 20 cents to make ?

> >

> > One word. IDIOTS.

> >

> > I am off their site by choice as I soon learned they had no medical science to teach me.

> >

> > But I told them to remember my name when LDN is the first thing their child is offeres !

> >

> > MARNA

>

March 10, 2010

I just want to say "THANK YOU!!!" to Marna, Skip, Dudley, and SO MANY others of you who have risked ridicule and censor to share the good news about LDN. I have been searching for an alternative to the hellacious drugs prescribed by my well-meaning doctors for over two decades. After submitting to many of the treatments (and seeing the awful affects on my body), yet not agreeing to others (despite being told I am causing permanent degenerative damage to joints, etc), all the while trying what seemed like EVERY natural/alternative remedy anyone could offer (and of course, NONE of that was cheap) - I AM ELATED to find LDN! I have only just started, so I'm speaking in faith, hoping I will by God's grace experience the results so many of you have had. But my point is …THANK YOU - w/out your stubbornness to keep putting the word out, despite rejection, castigation and derision, I would not have just recently learned of this amazing opportunity to try a treatment which would not tear down my body (unlike ALL the other standard protocols for autoimmune diseases - from steroids to stronger immunosuppresants to nasty biologicals). So THANK YOU FROM THE BOTTOM OF MY HEART!

And Marna - you are NOT a bad mom - you are amazing! God bless ALL you incredible mothers out there who have tried one thing after another, dealing w/ incredibly limiting diets and constant fear for your child - I can't even imagine - you all are truly AWESOME!!!

So PLEASE, despite the protests, disparaging remarks and insults to your intelligence, sincerity and motivation - don't stop sharing!!! There are TONS of us out there dying for a piece of good news and just a bit of hope, something the traditional meds simply cannot provide.

With much appreciation -

Barbi - hoping and praying this will work for me too - Crohn's, Ankylosing Spondilitis and Hashimoto's>> Good for you Marna, there is no need whatsover for that kind of thing, especially when you son has done so well, and that you are helping educate Dr's about LDN as well is wonderful. Take no notice of them, I too have a curious mind and don't expect to be shot down for it,,> Celia> > > Switch to: Text-Only, Daily Digest . Unsubscribe . Terms of Use.>

March 10, 2010

for best results for joints pain look at D-Phenylalanie 3x500 mg a day on empty stomach if you do not have high blood pressure and non toxic selenium

March 10, 2010

Hey Pat,

I don’t fully understand why but the

D-Phen is the one for pain and the DH is more for something else.

Mind you I got no noticeable reaction to

using it.

Good luck and let us know how you get on

with it.

Nuala

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Pat

Sent: 11 March 2010 22:14

'Margaret Schooling';

low dose naltrexone

Subject: RE: [low dose naltrexone]

Tried to help the Crohns and UC....but was censored off !

I found both DL- phenylalanine and D-phenylalaine

Is there a difference?

From: low dose naltrexone

[mailto:low dose naltrexone ] On Behalf Of Margaret Schooling

Sent: Thursday, March 11, 2010

1:38 PM

low dose naltrexone

Subject: Re: [low dose naltrexone]

Tried to help the Crohns and UC....but was censored off !

D-phenylalanine

I think you get get from iHerb.com. I don't think you need an Rx but if you

have high blood pressure (or are pregnant, I think) you shouldn't take it -

they'll probably advise contraindications on the site.

Yes, the rheumy said I had RA but said something about

chronic not acute, or the other way round. I've not bothered to think about

what he said - it was mutual dislike at first sight and both times I saw him he

kept people in pain waiting for hours by arriving late - and I'd already

decided to go on LDN. I just didn't worry about the diagnosis, I wanted it to

stop and it did.

Margaret

From: Pat <patinsallcomcast (DOT) net>

Margaret Schooling

Sent: Thu, March 11, 2010 7:27:10

PM

Subject: RE: [low dose naltrexone]

Tried to help the Crohns and UC....but was censored off !

Margaret,

Were you diagnosed with RA by your rheumy? My RF factor was

negative in the beginning as well but that doesn’t mean anything; that usually

go by clinical symptoms?

I’m just surprised that the rheumy only prescribed Celebrex and

didn’t want to put you on some type of DMARD?

Thanks for the tip on the D-phenylalanine.

Is an Rx from doc needed for that?

Pat

From: low dose naltrexone

[mailto:low dose naltrexone ] On Behalf Of Margaret Schooling

Sent: Thursday, March 11, 2010

12:25 PM

low dose naltrexone

Subject: Re: [low dose naltrexone]

Tried to help the Crohns and UC....but was censored off !

Hi Pat

I had started taking fish oil about 4 weeks before starting LDN. Before that

I'd had 3 courses of prednison (the pain and inflammation had begun about 7

months earlier), otherwise I was taking ibuprofen but not much because it

didn't seem to help - nothing did really. I was not able to function because of

the crushing fatigue, and wasn't able to rest because my limbs cramped up. It

started in my hands and wrists and was spreading to my elbows, feet, ankles and

knees. I was RF negative and that creatine test was slightly up. An xray showed

" moderate " joint damage. The rheumy I saw was supremely disinterested

and gave me a prescription for Celebrex that I threw away.

I started LDN on 22 April last year. I never thought of what I felt as side

effects, but as the body being treated by an improving immune system. Shooting

pains in places I'd not had pain and disturbed sleep and generally feeling very

strange. I remember thinking it was like being in convalescence, and that I was

more than happy to appreciate what I felt was positive - the alternative was

too ghastly anyway.

I suppose the first thing I noticed within days was less fatigue and being able

to relax, the cramps stopped though I did have them in the mornings for a

while. 4 days - I picked up a kettle with 1 hand without thinking and the pain

was tolerable - hadn't done that for months. It took about 3 weeks to wake up

and feel something like fit. Over the months things got better and better. I

had frequent bouts of feeling off colour that came and went - still get them

but less frequently - and nothing so severe as to alarm me. Not only did the

pain go, I think that somehow a lot of the deformation has gone, which I hadn't

hoped for.

I started on 1.5, got impatient and upped it to 3 after a week, moving on to

4.5 after 3 weeks. I'm back to 3 now because of weight loss (below 103

lbs) and it's suiting me fine.

Two added bonuses - my eyes which had started deteriorating (distortions and

blurring due to AMD) at the same time the RA pain etc began, got better. I now

hardly need glasses, just for very small print, and the distortions and

blurring have almost completely gone. And I didn't know I had a carcinoid tumour

in the guts. That was giving me a lot of trouble and was only discovered in

June. By November two whole body octreoscans showed no trace of any tumour in

my body.

I've not taken a pain killer for nearly a year now. But for

pain, D-phenylalanine is recommended with LDN.

Even people who've not responded as quickly and as well as I have to LDN, have

felt something hard to define, but something positive going on with LDN.

Presumably the immune system may have more difficulties to overcome in some

than in others.

Margaret

From: Pat <patinsallcomcast (DOT) net>

Margaret Schooling

Sent: Thu, March 11, 2010 5:49:41

PM

Subject: RE: [low dose naltrexone]

Tried to help the Crohns and UC....but was censored off !

Margaret,

I know you said LDN works for you. How long did it take before

you noticed it working? Did you have any side effects in the beginning?

More importantly, are you taking any other Rx drugs?

My family doc who was working with a patient with lupus has had

success with LDN for her; I just don’t know if her has her on any other Rx.

He said LDN works for about 50% of his patients and it may take

a few weeks before I see any results.I know for a lot of folks LDN is used

successfully but they still may need to take another med with it. I think 50%

success rate is actually phenomenal, esp. since inexpensive and few side

effects. My 1st rheumy wanted to put me on methotextrate when my RF

factor was negative 2 years; said something about treating aggressively in the

early stages so it doesn’t get real worse soon……..

I went off my doxycycline this week since it doesn’t seems

to be working for me and my doc said it may even be causing my joint pain. I

was pretty ok with just cortisone shots in the area I got minor joint pain, no

swelling or heat. When I started the doxy I started to get worse joint pain and

and in many joints unless my RA is getting worse but right now my CRP & sed

rate are normal.

But my shoulder & knee pain needs to be controlled by 2

Aleve every 8 hours. I really want to get off Aleve and ordered a 30 day supply

of LDN from Skip’s Pharmacy that I am waiting to hopefully get tomorrow in the

mail.

I just want to be prepared for any temporary side effects even

if minor and since you are in my same situation,i.e. RA with I assume no

other RX drugs

Much thanks for any input you can offer

Pat

From: low dose naltrexone

[mailto:low dose naltrexone ] On Behalf Of Margaret Schooling

Sent: Thursday, March 11, 2010

4:05 AM

low dose naltrexone

Subject: Re: [low dose naltrexone]

Tried to help the Crohns and UC....but was censored off !

We live in a far

from perfect world and always have to strike some imperfect balance. It would

be a shame if LDN ends up " being overused for things that make no

sense " , but I would rather that than it being underused when it would make

sense.

I'd guess most of us have been hurt and frustrated by having the door slammed

in our faces - it's even worse when your own friends and family do it. That

makes you really question your own place in the world.

But for encouragement we only need to read each other's stories and those on

Donnelly's Irish proposal site are some of the most moving I've read in

one go. Already knows of two people are starting LDN because of it.

Please go to www.ldndatabase.com

where you will find a direct link to the proposal site - there you can just

give the " Thumbs Up " and if you want, you can make a comment - even a

short comment like " I support this idea " will help. Anyone in the

world can give the Thumbs Up and comment.

The site is reaching people who would otherwise never hear about LDN but needs

momentum to keep doing this before the Your Country Your Call site closes.

Margaret

From: " slenzrphaol "

low dose naltrexone

Sent: Wed, March 10, 2010 4:29:06

PM

Subject: [low dose naltrexone] Tried

to help the Crohns and UC....but was censored off !

Welcome to my world. I have been dispensing LDN now for over

10 years. 10 years ago there were very few MD's who would prescribe

LDN. I was abused over the phone: " How dare you tell my patients

that LDN works " , " Stop practicing medicine " , " Snake

oil " on and on. The professional listservs were also

replete with the same sort of crap. Then slowly things began to

change. We now have over 8000 docs who have prescribed LDN for AIDS to

Herpes Zoster. The problem, which I can say I identified in 2006,

is that this drug will be overused for things that makes no sense, and that it

will be identified with Snake oil.

Prior to owning this pharmacy, I owned a pharmacy that primarily

compounded TPN for IBD patients. The sad thing was the only thing these

folks had to look forward too was slowly loosing pieces of their bowel.

Now we have a drug that works for the vast majority of patients, and it has

been studied. So take heart that you are providing, imho, the best

IBD drug there is: Low cost, readily available, effective, and low amount of

side effects. As a nurse you will know what I am talking about.

Bottom line for me, if it were my kid, they would be on LDN.

Dr.Skip

March 11, 2010

We live in a far from perfect world and always have to strike some imperfect balance. It would be a shame if LDN ends up "being overused for things that make no sense", but I would rather that than it being underused when it would make sense.I'd guess most of us have been hurt and frustrated by having the door slammed in our faces - it's even worse when your own friends and family do it. That makes you really question your own place in the world.But for encouragement we only need to read each other's stories and those on Donnelly's Irish proposal site are some of the most moving I've read in one go. Already knows of two people are starting LDN because of it. Please go to www.ldndatabase.com where you will find a direct link to the proposal site - there you can just give the "Thumbs Up" and if you want, you can make a comment - even a short comment like "I support this idea" will help. Anyone in the world can give the Thumbs Up and comment. The site is reaching people who would otherwise never hear about LDN but needs momentum to keep doing this before the Your Country Your Call site closes.MargaretFrom: "slenzrph@..." <slenzrph@...>low dose naltrexone Sent: Wed, March 10, 2010 4:29:06 PMSubject: [low dose naltrexone] Tried to help the Crohns and UC....but was censored off !

Welcome to my world. I have been dispensing LDN now for over 10 years. 10 years ago there were very few MD's who would prescribe LDN. I was abused over the phone: "How dare you tell my patients that LDN works", " Stop practicing medicine" , "Snake oil" on and on. The professional listservs were also replete with the same sort of crap. Then slowly things began to change. We now have over 8000 docs who have prescribed LDN for AIDS to Herpes Zoster. The problem, which I can say I identified in 2006, is that this drug will be overused for things that makes no sense, and that it will be identified with Snake oil.

Prior to owning this pharmacy, I owned a pharmacy that primarily compounded TPN for IBD patients. The sad thing was the only thing these folks had to look forward too was slowly loosing pieces of their bowel. Now we have a drug that works for the vast majority of patients, and it has been studied. So take heart that you are providing, imho, the best IBD drug there is: Low cost, readily available, effective, and low amount of side effects. As a nurse you will know what I am talking about.

Bottom line for me, if it were my kid, they would be on LDN.

Dr.Skip

March 11, 2010

Hi PatI had started taking fish oil about 4 weeks before starting LDN. Before that I'd had 3 courses of prednison (the pain and inflammation had begun about 7 months earlier), otherwise I was taking ibuprofen but not much because it didn't seem to help - nothing did really. I was not able to function because of the crushing fatigue, and wasn't able to rest because my limbs cramped up. It started in my hands and wrists and was spreading to my elbows, feet, ankles and knees. I was RF negative and that creatine test was slightly up. An xray showed "moderate" joint damage. The rheumy I saw was supremely disinterested and gave me a prescription for Celebrex that I threw away.I started LDN on 22 April last year. I never thought of what I felt as side effects, but as the body being treated by an

improving immune system. Shooting pains in places I'd not had pain and disturbed sleep and generally feeling very strange. I remember thinking it was like being in convalescence, and that I was more than happy to appreciate what I felt was positive - the alternative was too ghastly anyway. I suppose the first thing I noticed within days was less fatigue and being able to relax, the cramps stopped though I did have them in the mornings for a while. 4 days - I picked up a kettle with 1 hand without thinking and the pain was tolerable - hadn't done that for months. It took about 3 weeks to wake up and feel something like fit. Over the months things got better and better. I had frequent bouts of feeling off colour that came and went - still get them but less frequently - and nothing so severe as to alarm me. Not only did the pain go, I think that somehow a lot of the deformation has gone, which I hadn't hoped for.I started on 1.5, got

impatient and upped it to 3 after a week, moving on to 4.5 after 3 weeks. I'm back to 3 now because of weight loss (below 103 lbs) and it's suiting me fine.Two added bonuses - my eyes which had started deteriorating (distortions and blurring due to AMD) at the same time the RA pain etc began, got better. I now hardly need glasses, just for very small print, and the distortions and blurring have almost completely gone. And I didn't know I had a carcinoid tumour in the guts. That was giving me a lot of trouble and was only discovered in June. By November two whole body octreoscans showed no trace of any tumour in my body. I've not taken a pain killer for nearly a year now. But for pain, D-phenylalanine is recommended with LDN. Even people who've not responded as quickly and as well as I have to LDN, have felt something hard to define, but something

positive going on with LDN. Presumably the immune system may have more difficulties to overcome in some than in others.MargaretFrom: Pat <patinsall@...>Margaret Schooling <mschooling@...>Sent: Thu, March 11, 2010 5:49:41 PMSubject: RE: [low dose naltrexone] Tried to help the Crohns and UC....but was censored off !

Margaret, I know you said LDN works for you. How long did it take before

you noticed it working? Did you have any side effects in the beginning? More importantly, are you taking any other Rx drugs? My family doc who was working with a patient with lupus has had

success with LDN for her; I just donâ€™t know if her has her on any other Rx. He said LDN works for about 50% of his patients and it may take

a few weeks before I see any results.I know for a lot of folks LDN is used successfully

but they still may need to take another med with it. I think 50% success rate

is actually phenomenal, esp. since inexpensive and few side effects. My 1st

rheumy wanted to put me on methotextrate when my RF factor was negative 2

years; said something about treating aggressively in the early stages so it

doesnâ€™t get real worse soonâ€¦â€¦.. I went off my doxycycline this week since it doesnâ€™t seems to

be working for me and my doc said it may even be causing my joint pain. I was

pretty ok with just cortisone shots in the area I got minor joint pain, no

swelling or heat. When I started the doxy I started to get worse joint pain and

and in many joints unless my RA is getting worse but right now my CRP & sed

rate are normal. But my shoulder & knee pain needs to be controlled by 2

Aleve every 8 hours. I really want to get off Aleve and ordered a 30 day supply

of LDN from Skipâ€™s Pharmacy that I am waiting to hopefully get tomorrow in the

mail. I just want to be prepared for any temporary side effects even

if minor and since you are in my same situation,i.e. RA with I assume no other

RX drugs Much thanks for any input you can offer Pat

From:

low dose naltrexone [mailto:low dose naltrexone ] On

Behalf Of Margaret Schooling

Sent: Thursday, March 11, 2010 4:05 AM

low dose naltrexone

Subject: Re: [low dose naltrexone] Tried to help the Crohns and UC....but

was censored off !

We live in a

far from perfect world and always have to strike some imperfect balance. It

would be a shame if LDN ends up "being overused for things that make no

sense", but I would rather that than it being underused when it would make

sense.

I'd guess most of us have been hurt and frustrated by having the door slammed

in our faces - it's even worse when your own friends and family do it. That

makes you really question your own place in the world.

But for encouragement we only need to read each other's stories and those on

Donnelly's Irish proposal site are some of the most moving I've read in

one go. Already knows of two people are starting LDN because of it.

Please go to www.ldndatabase.com where you will find a direct link

to the proposal site - there you can just give the "Thumbs Up" and if

you want, you can make a comment - even a short comment like "I support

this idea" will help. Anyone in the world can give the Thumbs Up and

comment.

The site is reaching people who would otherwise never hear about LDN but needs

momentum to keep doing this before the Your Country Your Call site closes.

Margaret

From: "slenzrph@..."

<slenzrph@...>

low dose naltrexone

Sent: Wed, March 10, 2010 4:29:06 PM

Subject: [low dose naltrexone] Tried to help the Crohns and UC....but was

censored off !

Welcome to my world. I have been dispensing LDN now for over

10 years. 10 years ago there were very few MD's who would prescribe

LDN. I was abused over the phone: "How dare you tell my patients

that LDN works", " Stop practicing medicine" , "Snake

oil" on and on. The professional listservs were also