Re: Keeping LDN prescribing Dr. Info quiet

[Guest guest]

In response to Kim's query:

I think Dr's names should only be given on a private email basis, and only after corresponding with the seeker long enough to be sure of motive. Posting the pharmacies is a different matter, all compounding pharmacies who have a good reputation should be posted whenever anyone asks. Doctor's names and contact info should be sent to individuals only, no longer posted to the forum at large. And I don't believe any doctor's info should be passed along by anyone who is not a patient of that doctor and is not certain of the doctor's willingness to take on a new patient. I believe our doctor's are entitled to that courtesy.

Of course that is my opinion, for what it's worth.

[Guest guest]

has a valid point. Doctors names should not be posted openly

(unless they want that).

FWIW, To prevent misfits from wreaking havoc, I have removed the

automatic registration from my own LDNers site.

A

> In response to Kim's query:

>

> I think Dr's names should only be given on a private email basis,

and only after corresponding with the seeker long enough to be sure

of motive. Posting the pharmacies is a different matter, all

compounding pharmacies who have a good reputation should be posted

whenever anyone asks. Doctor's names and contact info should be

sent to individuals only, no longer posted to the forum at large.

And I don't believe any doctor's info should be passed along by

anyone who is not a patient of that doctor and is not certain of the

doctor's willingness to take on a new patient. I believe our

doctor's are entitled to that courtesy.

>

> Of course that is my opinion, for what it's worth.

>

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>

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[Guest guest]

I'm very sure we can continue to help each other and get the group back on track, and there may be some good come out of this latest upset.

We should never have been posting information on doctors without their permission. It is imperative that we maintain a good relationship with our doctors, whether our contact with them be they face to face or via phone.

It is a basic fact of life that we will encounter people who are difficult to deal with as we wander through the years. Sometimes it helps to remember that they may be dealing with overwhelming issues; sometimes you just have to grit your teeth and try to hold your peace. We've seen problems in both categories in the year I've been here. And yet we still have good feelings for each other.

This forum is extremely useful to people who are just beginning LDN. I know we see the same questions on a regular basis; obviously new users need the answers! For that reason alone it is important to continue our support of each other and keep this resource available to try to answer the questions that continue to arise.

JT

Re: [low dose naltrexone] Keeping LDN prescribing Dr. Info quiet

Well, maybe, Thanks to Edie, it's time we all just do as many have said they were surprised we HAVEN'T done already.

We got OUR LDN, so Good Luck to everyone else. I'm not going to ruin what's working for me by telling

This isn't a dark little secret any more. This group now needs to be kept on track.

ONE person shouldn't be able to not only start a stir like this, but to keep it going, festering, and exploding such as it has.

HELP ME OBI-WAN OWNER, YOU'RE OUR ONLY HOPE.

[Guest guest]

Larry, I hope you are not leaving... give this time to settle down and see how things go?

JT

Re: [low dose naltrexone] Keeping LDN prescribing Dr. Info quiet

Unfortunately , perhaps the time has come. Maybe we should thank Edie for showing us all a good lesson. We have to be thankful that a few docs were willing to help, but it's now getting to be too much of a world wide interest.

When only a few hundred were interested, a few were able to help many. Now that there's thousands and thousands, it's getting very complicated and unmanageable.

Good luck to everyone.

[Guest guest]

I am sorry if I ofended anyone but just getting started on LDN and getting the rug pulled out from under them was very upsetting.

Again, I am sorry and God bless you all. Edie

[low dose naltrexone] Keeping LDN prescribing Dr. Info quiet

These were two different people, but neither sounded very stable. If we continue to post the doctors names who will still do phone consultations, I'm afraid it will all be stopped. If we don't continue to post all the info, then we aren't helping everyone that we could be helping. What a dilemna!What do you guys think about this?

[Guest guest]

> In response to Kim's query:

>

> I think Dr's names should only be given on a private email basis,

and only after corresponding with the seeker long enough to be sure

of motive.

I think this is what it has come to, . I perhaps didn't word

what I was trying to say as well as you did, so thanks! I think we

should all just use our own best judgement from here on in as far as

passing the information that we have along. We don't know where all

of this is coming from, but when you have a board member openly

threaten to report a doctor it's time to sit up and pay attention.

My son would not be on LDN now if it weren't for this group and how

much you all helped me. I heard about it on another board, but this

is where I got all of the information I needed to do what I had to

do. If it weren't for people like I found here (Bren, Kiki, ,

, Larry, Reg, , you all know who you are...) I would have

never made the steps forward necessary to get Colby on LDN. You all

came forward and you answered all my questions without hesitation and

you pointed me in the right direction. I dare say you have done this

for many, many people.

8 months ago, prior to starting LDN, I had a 16 year old boy who

didn't feel like getting out of the house to do anything, and was so

depressed that he could barely function. Since he started LDN, I

have felt it is my responsibility to help other people the same way

you guys helped my son. After all of this, I now feel that I have to

be very careful who I talk to about this, and who I try to help,

since it is obvious that they might not have the best of intentions

for different reasons. It's a shame that it has come to this, but it

has.

I think it is imperative that we continue this group...LarryGC, you

just keep your butt right here and don't go anywhere. (I'm real

bossy, too, by the way.) We still have an obligation to others, and

as long as we can keep this going, we have to do it. We're just

going to have to be careful, and we're going to need to stay in

contact with each other and weigh things out and discuss them

privately and make our decisions from there.

Kim

[Guest guest]

It is very sad Kim that we've come to this because of irrational

individuals who have an axe to grind. Im here in Edmonton, AB and gave

my Dr's name out once....never again! She didn't think LDN would help

but was willing to take a " wait and see " stance. We dont want to ever

damage that patient/Dr. relationship where we have NO say in our

health care.

Kathy

On 8-Jan-05, at 11:21 AM, petessweetheart wrote:

>

> I've said this before, but I am going to say it again.  After recent

> threats posted regarding turning Dr. Bihari in to the AMA for doing

> phone consults, I believe we should really be careful who we share

> our prescribing doctor information with.  Not sure exactly how this

> should be handled, but it's time to get a plan.  Any suggestions? 

>

> I would certainly hate to see all of us using phone consultations to

> get our LDN finding ourselves without any way to get it because of

> someone else's ignorance.  I just don't know the best way to handle

> this situation. 

>

> I hate to sound so paranoid, but a few months ago there was someone

> here complaining of Dr. upping his fees for phone

> consultations.  On another board I use, there was someone raising ten

> kinds of hell because he had given her LDN and she claimed it had

> caused a fast growing tumor (lots of very vague details) and wanted

> to " sue " someone.  These were two different people, but neither

> sounded very stable.  If we continue to post the doctors names who

> will still do phone consultations, I'm afraid it will all be

> stopped.  If we don't continue to post all the info, then we aren't

> helping everyone that we could be helping.  What a dilemna!

>

> What do you guys think about this?

>

> Take care!

>

> Kim

>

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[Guest guest]

Problem people come and fortunately GO from this forum. This is

basically a group of very lovely people all suffering with this

dreadful disease who are just trying to help each other.

On 8-Jan-05, at 1:02 PM, wrote:

> Larry, I hope you are not leaving... give this time to settle down and

> see how things go?

>  

> JT

> Re: [low dose naltrexone] Keeping LDN prescribing Dr. Info quiet

>

> Unfortunately , perhaps the time has come.  Maybe we should thank

> Edie for showing us all a good lesson.  We have to be thankful that a

> few docs were willing to help, but it's now getting to be too much of

> a world wide interest.

>  

> When only a few hundred were interested, a few were able to help

> many.  Now that there's thousands and thousands, it's getting very

> complicated and unmanageable.

>  

> Good luck to everyone. 

>  

>

>

>

[Guest guest]

I can always be reached in my own group, MSWatchers

[low dose naltrexone] Re: Keeping LDN prescribing Dr. Info quiet

I think it is imperative that we continue this group...LarryGC, you just keep your butt right here and don't go anywhere. (I'm real bossy, too, by the way.) We still have an obligation to others, and as long as we can keep this going, we have to do it. We're just going to have to be careful, and we're going to need to stay in contact with each other and weigh things out and discuss them privately and make our decisions from there.

[Guest guest]

Abby,

I'm inclined to agree with you, and at the same time I know that a trial with 'scientific proof' (whatever that means) would maybe get doctors to be more willing to prescribe. I have a prescribing doc, and I can afford it now. I may not be able to if the FDA ever put their stamp of approval on it. Catch 22, I guess!

Marcie

In a message dated 1/9/2005 2:32:51 PM Central Standard Time, eveningdove2002@... writes:

For what its worth, I think that we should not push for trial testing etc. if the FDA ever found out that it REALLY DOES WORK and help people they will either make it so expensive no one can afford it or somehow pull the plug on it.

So as of right now my mouth is shut. I did find a dr. to perscribe and have just started taking LDN with some positive results and after years of suffering I don't want anything to mess with it.

Abby