Re: Naltrexone, low or normal dose? Please do LDN!

[Guest guest]

We have another question on the table that confuses this yet further. That is the role of the immune system. Period. The accepted "over active immune system" theory is now in question, so therapy intendend to suppress the immune system is also questionable.

I know this much. In some ways I feel much better on LDN. Still lousy, but improved bladder control has value beyond expression. I KNOW that LDN is doing that for me. And I'm definately not suggesting anyone increase their Naltrexone to the 50mg Dr Fuhrmann suggests. I am suggesting that we give him the same courtesy regarding his anecdotal evidence that we expect. I'd like to know how his regimen works when there are a few hundred people involved and not the half dozen currently involved.

For now I am an interested observer.

For that matter, when goat serum becomes available I'll be an interested observer for a long time before I become involved in that treatment. Being slow to try a treatment has saved me from ever using the CRABS, so I think it's a fine policy... But that doesn't mean I don't want to hear about them.

JT

----- Original Message -----

From: kreijenveld

low dose naltrexone

Sent: Sunday, October 03, 2004 1:07 PM

Subject: [low dose naltrexone] Naltrexone, low or normal dose? Please do LDN!

Hello Dear LDNer,I have read all the messages here and I am gratefull to participate on Your Experiencies with LDN. However, I also read the messages of Dr. Fuhrman.Instead of trying to see the backgrounds of dr. Bihari´s Theory on LDN, dr Fuhrman proposes a fully different workingprincip of opioidantagonists. His theory is, the blocking of all the opioid receptors, including a yet not known, proposed receptor, must be immune suppressive. However, that is definitivly not true.education..

[Guest guest]

Hello,

What type of information would you like to have? I am sure that most

of us would be more than willing to help.

Pam

[Guest guest]

--- In low dose naltrexone , " pamridge49 " <prsklak@c...>

wrote:

>

> Hello,

>

> What type of information would you like to have? I am sure that

most

> of us would be more than willing to help.

>

> Pam

Thanks to You Pam,

I am looking for scientific information. How does it works exactly?

And of course, how good does it works, compared to " usual " therapy´s

like the BARC?

Uptil now I have read about 200 scientific publications and I can

imagine, how LDN might work, bur there isn´t any real proof of it. I

did wright to dr. Bihari, trying to get into a discussion with him,

uptil now, I don´t have any awnser.

To me it is important to read all Your experiencies here and I have

noticed, LDN might have some Sideeffects. As far I can oversee the

group about 60-70 % of the user have relieve of spasticity und there

fatigue is better after LDN. About 30-40% of the people however

report of an increase of spasticity and that is a sideffect that

interferons have as well. Interesting to me!!

I can´t explain this sideeffect at the moment but am trying, to find

it out!

Are there any published data from any study on LDN? If not, such

studys must be started as soon as possible.

[Guest guest]

,

I completely agree with you. I do not understand why Dr. Bihari

doesn't " want " to become involved with us on this board. Not only

would he be a help to us, but maybe our experiences would also aid

him in his LDN usage.

Pam

[Guest guest]

Larry,

I sure wish he were online too; it seems to me that if you can set up

a website, and tell everyone about the research that you have been

doing.....and get all of us here to be using LDN, then maybe you

should somehow find someone in your office that could possibly gather

some of the questions that we are all asking, and post some answers.

I guess that it just upsets me that there is " nobody " to ask

questions of, especially when things aren't going well with the LDN.

I feel as though I am my own researcher, trying to make things better

for myself, and maybe passing on little tid-bits of the positive

results to all of you....but it all just seems so hit or miss. It

sure would be nice to know " definitely " what the next steps should be

when the LDN isn't doing what Dr. Bihari says it should.

Pam

[Guest guest]

A 'normal' dose of Naltrexone is 50 mg. Way more than the dose that

works for MS (or many other auto-immune diseases. I really don't

think we want to advocate the full FDA supported dose.

Larry

>

> > Amen But that doesn't reduce my pleasure in being able to feel

my feet

> > again, just leaves me wondering why he isn't interested.

> >

> > ----- Original Message -----

> > From: pamridge49

> > low dose naltrexone

> > Sent: Monday, October 04, 2004 3:11 PM

> > Subject: [low dose naltrexone] Re: Naltrexone, low or normal

> > dose? Please do LDN!

> >

> >

> >

> > ,

> >

> > I completely agree with you. I do not understand why Dr.

> > Bihari

> > doesn't " want " to become involved with us on this board. Not

> > only

> > would he be a help to us, but maybe our experiences would

> > also aid

> > him in his LDN usage.

> >

> > Pam

> >

> >

> >

> >

> >

> >

[Guest guest]

--- In low dose naltrexone , " pamridge49 " <prsklak@c...>

wrote:

>

> Larry,

>

> I sure wish he were online too; it seems to me that if you can set up

> a website, and tell everyone about the research that you have been

> doing.....and get all of us here to be using LDN, then maybe you

> should somehow find someone in your office that could possibly gather

> some of the questions that we are all asking, and post some answers.

>

>

Hi,

Some time ago I went to the officiale LDN site and sent an email here:

dgluck@...

this person answered my questions about LDN.

If I remember right this person has direct contact with Dr Bihari.

Also I think it is this person who started the website and not DrB.

[Guest guest]

Hear hear !!!!

I've been thinking along the same lines since I joined this

forum...We need Dr Bihari's guidance now and then, especially those

of us who cant visit him personally or cant afford to.

I'm tired of relying on heresay about LDN.....someone who is due to

visit him soon can maybe put this suggestion to him?

Friday

> Perhaps Dr Bihari could occasionally participate in our group to

help dispel fears and misunderstandings? It would sure be helpful...

>