A week & a half on LDN

[Guest guest]

Hi,

As I have said in the past I am taking part on the

UCSF trial on LDN.

Since 6/14/07 I am sure I am on LDN because of the

symptoms I have been experiencing such as dreams and a

bit light-headed. Perhaps also something funny is

going on w/ my appetite. Perhaps am not as hungry as I

had been ??? Not sure, but a coupe of people have

mentioned that I look as if I have lost weight.

Anyway, overall, nothing dramatic & everything is very

tolerable.

W.r.t how I feel overall, with the exception of the

first few days that I felt slightly better, I haven't

noticed any improvement so far. I know that many LDN

experts have mentioned that it takes time for LDN to

kick in.

that's all for now - just for the records

Theo

________________________________________________________________________________\

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[Guest guest]

Hi Theo, Good to hear from you again!! It does sound like your'e on LDN. I also lost some weight and wasn't as hungry as first. Maybe it has something to do with rising endorphins. Question...what dose do they have you on? Just curious. Did they start you guys on a lower dose or go right to a higher one? You are also correct in maybe not experiencing any symptom relief yet. Iv'e been on 3 mg a little over a month now & I still haven't noticed and symptom relief. Just remember, if LDN slows or stops disease progression, then it's done it's job. Hang in there & keep us updated.Regards,Janet Papillion <petaloudas@...> wrote: Hi, As I have said in the past I am taking part on the UCSF trial on LDN. Since 6/14/07 I am sure I am on LDN because of the symptoms I have been experiencing such as dreams and a bit light-headed. Perhaps also something funny is going on w/ my appetite. Perhaps am not as hungry as I had been ??? Not sure, but a coupe of people have mentioned that I look as if I have lost weight. Anyway, overall, nothing dramatic & everything is very tolerable. W.r.t how I feel overall, with the exception of the first few days that I felt slightly better, I haven't noticed any improvement so far. I know that many LDN experts have mentioned that it

takes time for LDN to kick in. that's all for now - just for the records Theo __________________________________________________________ Building a website is a piece of cake. Small Business gives you all the tools to get online. http://smallbusiness./webhosting

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[Guest guest]

Hi Janet,

They started us on 4.5mg, of course in parallel to

copaxone, which I personally inject it every other

day.

Yes, I am hopeful that it will kick in at some point

in time LDN and will give me a nice surprise.

The problem is though that currently am going through

a stressful life and am not sure how this may be

blocking or delaying LDN's positiv impact.

thanks for the support

cheers

Theo

--- Janet Kunselman <janetkunselman@...> wrote:

> Hi Theo,

>

> Good to hear from you again!! It does sound

> like your'e on LDN. I also lost some weight and

> wasn't as hungry as first. Maybe it has something

> to do with rising endorphins. Question...what dose

> do they have you on? Just curious. Did they start

> you guys on a lower dose or go right to a higher

> one?

> You are also correct in maybe not experiencing

> any symptom relief yet. Iv'e been on 3 mg a little

> over a month now & I still haven't noticed and

> symptom relief. Just remember, if LDN slows or

> stops disease progression, then it's done it's job.

> Hang in there & keep us updated.

>

> Regards,

> Janet

>

>

>

> Papillion <petaloudas@...> wrote:

> Hi,

>

> As I have said in the past I am taking part on the

> UCSF trial on LDN.

> Since 6/14/07 I am sure I am on LDN because of the

> symptoms I have been experiencing such as dreams

> and a

> bit light-headed. Perhaps also something funny is

> going on w/ my appetite. Perhaps am not as hungry

> as I

> had been ??? Not sure, but a coupe of people have

> mentioned that I look as if I have lost weight.

>

> Anyway, overall, nothing dramatic & everything is

> very

> tolerable.

>

> W.r.t how I feel overall, with the exception of the

> first few days that I felt slightly better, I

> haven't

> noticed any improvement so far. I know that many

> LDN

> experts have mentioned that it takes time for LDN

> to

> kick in.

>

> that's all for now - just for the records

>

> Theo

>

>

>

__________________________________________________________

> Building a website is a piece of cake. Small

> Business gives you all the tools to get online.

> http://smallbusiness./webhosting

>

>

>

>

>

> ---------------------------------

> Now that's room service! Choose from over 150,000

> hotels

> in 45,000 destinations on Travel to find your

fit.

________________________________________________________________________________\

____

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today's economy) at Games.

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[Guest guest]

Hi Theo,

You are absolutely right that stress is not good for MS, and we have found on many occasions that those having exacerbations while on LDN had been experiencing a higher level of stress (divorce, financing etc.).

Nothing is worth the stress when it effect's your health. Easier said than done, I know.

Aletha

Re: [low dose naltrexone] A week & a half on LDN

Hi Janet,They started us on 4.5mg, of course in parallel tocopaxone, which I personally inject it every otherday.Yes, I am hopeful that it will kick in at some pointin time LDN and will give me a nice surprise. The problem is though that currently am going througha stressful life and am not sure how this may beblocking or delaying LDN's positiv impact.thanks for the supportcheersTheo--- Janet Kunselman <janetkunselman > wrote:> Hi Theo,> > Good to hear from you again!! It does sound> like your'e on LDN. I also lost some weight and> wasn't as hungry as first. Maybe it has something> to do with rising endorphins. Question...what dose> do they have you on? Just curious. Did they start> you guys on a lower dose or go right to a higher> one?> You are also correct in maybe not experiencing> any symptom relief yet. Iv'e been on 3 mg a little> over a month now & I still haven't noticed and> symptom relief. Just remember, if LDN slows or> stops disease progression, then it's done it's job. > Hang in there & keep us updated.> > Regards,> Janet> > > > Papillion <petaloudas > wrote: > Hi,> > As I have said in the past I am taking part on the> UCSF trial on LDN.> Since 6/14/07 I am sure I am on LDN because of the> symptoms I have been experiencing such as dreams> and a> bit light-headed. Perhaps also something funny is> going on w/ my appetite. Perhaps am not as hungry> as I> had been ??? Not sure, but a coupe of people have> mentioned that I look as if I have lost weight.> > Anyway, overall, nothing dramatic & everything is> very> tolerable.> > W.r.t how I feel overall, with the exception of the> first few days that I felt slightly better, I> haven't> noticed any improvement so far. I know that many> LDN> experts have mentioned that it takes time for LDN> to> kick in.> > that's all for now - just for the records> > Theo> > >__________________________________________________________> Building a website is a piece of cake. Small> Business gives you all the tools to get online.> http://smallbusiness./webhosting > > > > > > ---------------------------------> Now that's room service! Choose from over 150,000> hotels > in 45,000 destinations on Travel to find yourfit.__________________________________________________________Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games.http://get.games./proddesc?gamekey=monopolyherenow

[Guest guest]

Very interesting Aletha. I am currently in a very stressful

situation myself for the past 2 years. In Fall 2005 I had to go off

work becuase of the increasing severity of my symptoms. I managed

to get LTD (long term disability) through my workplace but even that

was and continues to be stressful and will get worse once I get to

the end of this year (2 year anniversary when they try to cut you

off). I am obligated thru them to apply for gov't disability

insurance and that is pure and total hell on earth to go through. I

was denied on 1st and 2nd applications and now in the process of

preparing for a public hearing (Tribunal)on my case. Words could

not even express how impossible it is to go thru this process and

split oneself down the middle, trying to focus on " health " and such

a stressful, humiliating and scrutinizing ordeal at the same time.

So perhaps that is why I am reacting as I am to the LDN? I am

trying to be calm about everything on a daily basis, but the stress

is there subliminally (sort of like waiting for the guillotine to

drop on your head....).

>

> Hi Theo,

>

> You are absolutely right that stress is not good for MS, and we

have found on many occasions that those having exacerbations while

on LDN had been experiencing a higher level of stress (divorce,

financing etc.).

>

> Nothing is worth the stress when it effect's your health. Easier

said than done, I know.

>

> Aletha

>

[Guest guest]

Hi

My husband went through the same thing - a total nightmare BUT he

won in the end so dont give up.

He applied for disability - not because he is unable to work at the

moment but realistically there will be a time when he cant and he

wanted to try to set something up in advance, knowing how long the

whole process took.

He is self employed so in his case he will have nothing if he doesnt

work - living in San Francisco (SO expensive!) we knew we needed to

plan ahead. It took about two years I think and he also got turned

down - in the end he had to go and see a judge who finally ruled in

his favor! He quietly told the judge that he was never going to get

any better - his MS was not going to just " get better " like the flu

or something.

He still works every day doing physical work - it`s not easy but

he`s determined to keep at it until retirement age (he`s 45) and

three years of LDN has appeared to stop any progress. He only

benefits he gets now is more or less free medical help - he`s not

actually taking any money but hopefully if he needs it then the

ground work will have been done in advance.

Good luck - most people would rather still work and lead a " normal "

life so being on disability is not something we all desire.

Bev

> >

> > Hi Theo,

> >

> > You are absolutely right that stress is not good for MS, and we

> have found on many occasions that those having exacerbations while

> on LDN had been experiencing a higher level of stress (divorce,

> financing etc.).

> >

> > Nothing is worth the stress when it effect's your health.

Easier

> said than done, I know.

> >

> > Aletha

> >

>

[Guest guest]

Theo,I've been on ldn for 7 mo, 3mg (I have PLS). I had great improvements, even with my allergies!This past month I've had a lot of abnormal family stress. It has set me back physically with my pls. Do whatever it takes to avoid the stress. Good luck on the ldn, take care.Cira, PLS

[Guest guest]

>

> Hi Janet,

>

> They started us on 4.5mg, of course in parallel to

> copaxone, which I personally inject it every other

> day.

>

> Yes, I am hopeful that it will kick in at some point

> in time LDN and will give me a nice surprise.

> The problem is though that currently am going through

> a stressful life and am not sure how this may be

> blocking or delaying LDN's positiv impact.

>

> thanks for the support

>

> cheers

> Theo

==============

I just cannot keep quiet any longer. If these USCSF doctors are

telling people that LDN will improve everyone's symptoms, that is VERY

MISLEADING!!!!!!!!!! Only 2/3 of people with MS will " possibly " see

symptom improvement. LDN's main purpose is NOT to improve symptoms,

it's main purpose IS to halt disease progression, if one gets symptom

improvement on LDN then that is just an added plus.

[Guest guest]

, AMEN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!JanetBren <b63powell@...> wrote: > > Hi Janet, > > They started us on 4.5mg, of course in parallel to > copaxone, which I personally inject it every other > day. > > Yes, I am hopeful that it will kick in at some point > in

time LDN and will give me a nice surprise. > The problem is though that currently am going through > a stressful life and am not sure how this may be > blocking or delaying LDN's positiv impact. > > thanks for the support > > cheers > Theo ============== I just cannot keep quiet any longer. If these USCSF doctors are telling people that LDN will improve everyone's symptoms, that is VERY MISLEADING!!!!!!!!!! Only 2/3 of people with MS will "possibly" see symptom improvement. LDN's main purpose is NOT to improve symptoms, it's main purpose IS to halt disease progression, if one gets symptom improvement on LDN then that is just an added plus.

TV dinner still cooling?Check out "Tonight's Picks" on TV.

[Guest guest]

Hi ,

What is the general idea of how it works for CFS/FM compared to MS?

CFS/FM can be either classified as abrupt or gradual onset. In my

case, it was a gradual onset. But it isn't classifed as

a " progressive " condition in traditional medical opinion. Of course,

when one truly knows the nature of the immunological and nervous

system devastation with CFS/FM then truly one can get worse over time

if one does not take many preventative measures (dietary,

supplementary, stress mgt, etc). And the literature on CFS/FM seems

to indicate that death in these populations is often either suicide

related (due to feeling like one is not taken seriously in their

situation by doctors, family, friends, etc), or cancer. The rates for

cancer are quite alarming.

http://www.immunesupport.com/library/showarticle.cfm/ID/7215/

So indeed perhaps in the future it will be classifed as a progressive

disease.

In the many cases I have read where people see dramatic symptom

improvement, I am sure that due to the disease halting nature of LDN

(and the fact that most people will be doing adjuvant therapies for

their health) that the body has a chance to " heal " .....does that make

sense?

>

>

> I just cannot keep quiet any longer. If these USCSF doctors are

> telling people that LDN will improve everyone's symptoms, that is

VERY

> MISLEADING!!!!!!!!!! Only 2/3 of people with MS will " possibly " see

> symptom improvement. LDN's main purpose is NOT to improve symptoms,

> it's main purpose IS to halt disease progression, if one gets

symptom

> improvement on LDN then that is just an added plus.

>

>

>

[Guest guest]

Hi ,

Noone said & or claimed such a statement.

Theo

--- Bren <b63powell@...> wrote:

>

> >

> > Hi Janet,

> >

> > They started us on 4.5mg, of course in parallel to

> > copaxone, which I personally inject it every other

> > day.

> >

> > Yes, I am hopeful that it will kick in at some

> point

> > in time LDN and will give me a nice surprise.

> > The problem is though that currently am going

> through

> > a stressful life and am not sure how this may be

> > blocking or delaying LDN's positiv impact.

> >

> > thanks for the support

> >

> > cheers

> > Theo

> ==============

>

> I just cannot keep quiet any longer. If these USCSF

> doctors are

> telling people that LDN will improve everyone's

> symptoms, that is VERY

> MISLEADING!!!!!!!!!! Only 2/3 of people with MS

> will " possibly " see

> symptom improvement. LDN's main purpose is NOT to

> improve symptoms,

> it's main purpose IS to halt disease progression, if

> one gets symptom

> improvement on LDN then that is just an added plus.

>

>

>

>

________________________________________________________________________________\

____

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[Guest guest]

Hi Cira,

It makes sense that stress dos have its impact.

Thanks very much

Theo

--- " ciracole@... " <ciracole@...>

wrote:

> Theo,

> I've been on ldn for 7 mo, 3mg (I have PLS). I had

> great improvements, even with my allergies!

> This past month I've had a lot of abnormal family

> stress. It has set me back physically with my pls.

> Do whatever it takes to avoid the stress. Good luck

> on the ldn, take care.

> Cira, PLS

________________________________________________________________________________\

____

Be a better Heartthrob. Get better relationship answers from someone who knows.

Answers - Check it out.

http://answers./dir/?link=list & sid=396545433

[Guest guest]

>

> Hi ,

> What is the general idea of how it works for CFS/FM compared to MS?

> CFS/FM can be either classified as abrupt or gradual onset. In my

> case, it was a gradual onset. But it isn't classifed as

> a " progressive " condition in traditional medical opinion. Of

course,

> when one truly knows the nature of the immunological and nervous

> system devastation with CFS/FM then truly one can get worse over

time

> if one does not take many preventative measures (dietary,

> supplementary, stress mgt, etc). And the literature on CFS/FM seems

> to indicate that death in these populations is often either suicide

> related (due to feeling like one is not taken seriously in their

> situation by doctors, family, friends, etc), or cancer. The rates

for

> cancer are quite alarming.

>

> http://www.immunesupport.com/library/showarticle.cfm/ID/7215/

>

> So indeed perhaps in the future it will be classifed as a

progressive

> disease.

>

> In the many cases I have read where people see dramatic symptom

> improvement, I am sure that due to the disease halting nature of LDN

> (and the fact that most people will be doing adjuvant therapies for

> their health) that the body has a chance to " heal " .....does that

make

> sense?

>

>

==============

Just like MS, the cause of CFS & FM is strictly theoretical,

meaning...they're guessing. LDN halts the disease process and allows

the immune system do what it was meant to do and that's fight

disease. LDN cannot repair permanent damage already done but in the

long haul the body's boosted immune system can repair certain damage

that is reasonably repairable. Now, that's what I got from Bihari, is

Bihari's theory correct in boosting the immune system instead of

suppressing it, the answer as far as I'm concerned is, I myself

believe in Bihari's theory but yet there are 3 people in my family

including myself that are benefitting greatly from Bihari's theory.

I am beginning to fear that our childhood vaccinations are the cause

of some of our autoimmune diseases and possibly the vaccines our

parents have gotten in past for military duty/training exercises, etc.

may be filtering to offspring.

Do you all know that the Amish do not get Autism, why, they do not

vaccinate.

This is strictly my opinion and not a professional one.

[Guest guest]

>

> Hi ,

>

> Noone said & or claimed such a statement.

>

> Theo

=========

What many of us here are getting from what you are writing is that you

expect to feel a difference on LDN because the doctors at USCSF told

you that you would. Some of us got that out of your first and second

posts. There are people with MS who go on LDN and do not feel a thing

but after being on LDN a year or more report their disease has stopped

progressing/worsening, some have MRI's that show this. I just don't

want people to think just because they feel nothing on LDN means it's

not working, that's not so.

[Guest guest]

My husband was at UCSF last week for a check up with his neuro and

we had a quick chat about the trial (which is not on as he`s

already taking LDN) and his neuro as good as agreed that the trial

will probably not be too sucessful since some people are taking it

with interferons. He did say it was a start in the right direction

though but I wonder if the results will be of any real use and it`ll

get put to one side afterwards.

was his first LDN patient so he`s very interested how he`s

doing.

> > >

> > > Hi Janet,

> > >

> > > They started us on 4.5mg, of course in parallel to

> > > copaxone, which I personally inject it every other

> > > day.

> > >

> > > Yes, I am hopeful that it will kick in at some

> > point

> > > in time LDN and will give me a nice surprise.

> > > The problem is though that currently am going

> > through

> > > a stressful life and am not sure how this may be

> > > blocking or delaying LDN's positiv impact.

> > >

> > > thanks for the support

> > >

> > > cheers

> > > Theo

> > ==============

> >

> > I just cannot keep quiet any longer. If these USCSF

> > doctors are

> > telling people that LDN will improve everyone's

> > symptoms, that is VERY

> > MISLEADING!!!!!!!!!! Only 2/3 of people with MS

> > will " possibly " see

> > symptom improvement. LDN's main purpose is NOT to

> > improve symptoms,

> > it's main purpose IS to halt disease progression, if

> > one gets symptom

> > improvement on LDN then that is just an added plus.

> >

> >

> >

> >

>

>

>

>

>

_____________________________________________________________________

_______________

> Be a better Heartthrob. Get better relationship answers from

someone who knows. Answers - Check it out.

> http://answers./dir/?link=list & sid=396545433

>

[Guest guest]

>

> My husband was at UCSF last week for a check up with his neuro and

> we had a quick chat about the trial (which is not on as he`s

> already taking LDN) and his neuro as good as agreed that the trial

> will probably not be too sucessful since some people are taking it

> with interferons. He did say it was a start in the right direction

> though but I wonder if the results will be of any real use and it`ll

> get put to one side afterwards.

> was his first LDN patient so he`s very interested how he`s

> doing.

========

Don't know why I keep writing it as USCSF when it's UCSF, I'll try to

remember to do it correctly.

Someone voiced their concerns to me today that the MS trials using the

interferons and other immune suppressants with LDN is a beginning to

the end of LDN and LDN will never be taken seriously after these

trials are done. Unfortunately I feel the same way. It doesn't take

a rocket scientist to know you should not use an immune suppressant

with an immune booster if you want to get anywhere...that'd be like

trying to drive the INDY 500 with one foot pressing the brake and the

other foot pressing the accelerator both at the same time.

[Guest guest]

I'm going to the Doctor tomorrow to try to get a prescription for LDN.I am on Avonex. Just started 7 weeks ago.I have read that I'm not supposed to just stop taking Avonex.How do I transition from Avonex to LDN safely?Thank all of you for the education. I have been lurking and reading for 1 1/2 weeks.Bren <b63powell@...> wrote: > > My husband was at UCSF last week for a check up with his neuro and > we had a quick chat about the trial (which is not on as he`s > already taking LDN) and his neuro as good as agreed that the trial > will probably not be too sucessful since some people are taking it > with interferons. He did say it was a start in the right direction > though but I wonder if the results will be of any real use and it`ll > get put to one side afterwards. > was his first LDN patient so he`s very interested how he`s > doing. ======== Don't know why I keep writing it as USCSF when it's UCSF, I'll try to remember to do it correctly. Someone voiced their concerns to me today that the MS trials using the interferons and other immune suppressants with LDN is a beginning to the end of LDN and LDN will never be taken seriously after these

trials are done. Unfortunately I feel the same way. It doesn't take a rocket scientist to know you should not use an immune suppressant with an immune booster if you want to get anywhere...that'd be like trying to drive the INDY 500 with one foot pressing the brake and the other foot pressing the accelerator both at the same time. Price214-551-2713www.TruckingDeals.com

[Guest guest]

>

> I'm going to the Doctor tomorrow to try to get a prescription for LDN.

>

> I am on Avonex. Just started 7 weeks ago.

>

> I have read that I'm not supposed to just stop taking Avonex.

>

> How do I transition from Avonex to LDN safely?

>

> Thank all of you for the education. I have been lurking and reading

for 1 1/2 weeks.

Avonex and LDN work against each other. I used Avonex for three years

and stopped it cold turkey without problems.

Art

--

[Guest guest]

> >

> > Hi ,

> >

> > Noone said & or claimed such a statement.

> >

> > Theo

> =========

>

> What many of us here are getting from what you are writing is that

you

> expect to feel a difference on LDN because the doctors at USCSF

told

> you that you would. Some of us got that out of your first and

second

> posts. There are people with MS who go on LDN and do not feel a

thing

> but after being on LDN a year or more report their disease has

stopped

> progressing/worsening, some have MRI's that show this. I just

don't

> want people to think just because they feel nothing on LDN means

it's

> not working, that's not so.

>

>

>

That's the impression I was getting, too.

Art

[Guest guest]

After 2 years on Avonex it was obvious that it was doing NOTHING for me, so I quit...cold turkey. No problems. Marcie walker price <truckingdeals@...> wrote: I'm going to the Doctor tomorrow to try to get a prescription for LDN.I am on Avonex. Just started 7 weeks ago.I have read that I'm not supposed to just stop taking Avonex.How do I

transition from Avonex to LDN safely?Thank all of you for the education. I have been lurking and reading for 1 1/2 weeks.Bren <b63powell > wrote: >> My husband was at UCSF last week for a check up with his neuro and > we had a quick chat about the trial (which is not on as he`s > already taking LDN) and his neuro as good as agreed that the trial > will probably not be too sucessful since some people are taking it > with interferons. He did say it was a start in the right direction > though but I wonder if the results will be of any real use and it`ll > get put to one side

afterwards.> was his first LDN patient so he`s very interested how he`s > doing.========Don't know why I keep writing it as USCSF when it's UCSF, I'll try to remember to do it correctly.Someone voiced their concerns to me today that the MS trials using the interferons and other immune suppressants with LDN is a beginning to the end of LDN and LDN will never be taken seriously after these trials are done. Unfortunately I feel the same way. It doesn't take a rocket scientist to know you should not use an immune suppressant with an immune booster if you want to get anywhere...that'd be like trying to drive the INDY 500 with one foot pressing the brake and the other foot pressing the accelerator both at the same time. Price214-551-2713www.TruckingDeals.com

[Guest guest]

I was on Avonex for nearly 10 years!! I stopped cold turkey as well in Jan.07 with no problems. Actually, I started to feel better because Avonex was forcing my white blood count down to 2.8, Normal low is 4.5 !!! Avonex was doing nothing for me and I was continuing to have flare ups. Don't miss it a bit. I'm doing well on LDN and NO BAD SIDE EFFECTS YIPPIE!!!!!!!!!!!!!!!Best Wishes,Janetwalker price <truckingdeals@...> wrote: I'm going to the

Doctor tomorrow to try to get a prescription for LDN.I am on Avonex. Just started 7 weeks ago.I have read that I'm not supposed to just stop taking Avonex.How do I transition from Avonex to LDN safely?Thank all of you for the education. I have been lurking and reading for 1 1/2 weeks.Bren <b63powell > wrote: > > My husband was at UCSF last week for a check up with his neuro and > we had a quick chat about the trial (which is not on as he`s > already taking LDN) and his neuro as good as agreed that the trial > will probably not be too

sucessful since some people are taking it > with interferons. He did say it was a start in the right direction > though but I wonder if the results will be of any real use and it`ll > get put to one side afterwards. > was his first LDN patient so he`s very interested how he`s > doing. ======== Don't know why I keep writing it as USCSF when it's UCSF, I'll try to remember to do it correctly. Someone voiced their concerns to me today that the MS trials using the interferons and other immune suppressants with LDN is a beginning to the end of LDN and LDN will never be taken seriously after these trials are done. Unfortunately I feel the same way. It doesn't take a rocket scientist to know you should not use an immune suppressant with an immune booster if you want to get anywhere...that'd be like trying to drive the INDY 500 with one foot pressing the brake and the

other foot pressing the accelerator both at the same time. Price214-551-2713www.TruckingDeals.com

Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos more.

[Guest guest]

NO !

You either have NOT read what I said or you aiming at

something else.

At my very first posting I wrote that I was about to

switch from either placebo to LDN or vice versa when I

visited my regular neuro - a non-UCSF neuro - and when

I told him that I was on the trial and had felt

nothing so far he had said that if I was taking taking

LDN I would have felt side-effects alraedy so he

thought I had probably started on placebo.

That is what I had said, and please stop distorting

what I had said because I have kept copies of all my

postings so don't even try again.

It does not work

Theo

--- Bren <b63powell@...> wrote:

>

> >

> > Hi ,

> >

> > Noone said & or claimed such a statement.

> >

> > Theo

> =========

>

> What many of us here are getting from what you are

> writing is that you

> expect to feel a difference on LDN because the

> doctors at USCSF told

> you that you would. Some of us got that out of your

> first and second

> posts. There are people with MS who go on LDN and

> do not feel a thing

> but after being on LDN a year or more report their

> disease has stopped

> progressing/worsening, some have MRI's that show

> this. I just don't

> want people to think just because they feel nothing

> on LDN means it's

> not working, that's not so.

>

>

>

>

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[Guest guest]

Papillion,

Regardless of what doctor told you that you would feel something upon

starting LDN is not the case. Some never see improvement in symptoms

and some can only tell they are improving by the disease progression

halting. The only way Marcie knows LDN is working is her last MRI

showed no new lesions and no active lesions in the nearly 4 years

she's been on LDN, Marcie has progressive MS. Your statement below is

what's really got me, Art and Marcie concerned.

Are you thinking LDN is doing nothing because you haven't felt a kick

in? Who are these LDN experts you speak of? Too many people come in

here expecting LDN to get rid of all their symptoms, that's not going

to happen. As I said before, LDN's main purpose is to stop disease

progression, not to improve symptoms. You may never feel a kick-in

but that does not mean LDN is not working.

Papillion wrote....

" I haven't noticed any improvement so far. I know that many LDN

experts have mentioned that it takes time for LDN to kick in. "

My main rant against the MS and LDN trials is that they are using LDN

along with the interferons, it makes no sense unless one is trying to

ruin LDN's chances.

[Guest guest]

Because now I am convinced that you ate distorting the

truth for reasons that you only know I am copying

exactly my very first posting for everyone else to

see.

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

low dose naltrexone

From: " Papillion " <petaloudas@...> Add to

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Date: Wed, 13 Jun 2007 22:26:16 -0700 (PDT)

Subject: [low dose naltrexone] Starting on LDN

Hi

I have been on the LDN clinical trial at UCSF and

almost a week ago I completed the 1st phase. Both my

neuro as well as myself felt that i was on placebo

during the 1st phase.

According to my neuro, who is not w/ UCSF, I would

have felt the drug somehow had I started on LDN.

Coming THU, in 1 day that is, will be switching to

possibly LDN.

I will keep the list posted on my experiences.

regards

theo

--- Bren <b63powell@...> wrote:

>

> Papillion,

>

> Regardless of what doctor told you that you would

> feel something upon

> starting LDN is not the case. Some never see

> improvement in symptoms

> and some can only tell they are improving by the

> disease progression

> halting. The only way Marcie knows LDN is working

> is her last MRI

> showed no new lesions and no active lesions in the

> nearly 4 years

> she's been on LDN, Marcie has progressive MS. Your

> statement below is

> what's really got me, Art and Marcie concerned.

>

> Are you thinking LDN is doing nothing because you

> haven't felt a kick

> in? Who are these LDN experts you speak of? Too

> many people come in

> here expecting LDN to get rid of all their symptoms,

> that's not going

> to happen. As I said before, LDN's main purpose is

> to stop disease

> progression, not to improve symptoms. You may never

> feel a kick-in

> but that does not mean LDN is not working.

>

> Papillion wrote....

> " I haven't noticed any improvement so far. I know

> that many LDN

> experts have mentioned that it takes time for LDN to

> kick in. "

>

>

> My main rant against the MS and LDN trials is that

> they are using LDN

> along with the interferons, it makes no sense unless

> one is trying to

> ruin LDN's chances.

>

>

>

>

________________________________________________________________________________\

____

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[Guest guest]

Papillion,

I'm not trying to say you are in the wrong, it's whomever told you

certain things about LDN that are not true that I am trying to

correct. I don't want you to be expecting something that may not

happen and then say LDN didn't work for you because you were told by a

doctor that you would feel a kick-in, etc.

I really don't know what the aim is of UCSF trialing LDN for such a

short time frame. Surely it's not to see if LDN will halt disease

progression. A year long or more trial would need to be done if that

were the case.

Nothing against you Papillion, just what you've been told about LDN.