Trying to find LDN prescribing doc in Western KY or TN

[Guest guest]

Hi Kim,

Dr in WI will do phone consultations. His number is listed at

the www.ldninfo.org site. How I found my Dr. is I called the closest

compounding pharmacy on the list and asked for names of Drs who will

prescribe the ldn.... They gave me a Dr., not a neurologist, who saw

me the next day and prescribed the ldn for me. Now I am on it for 2

months and love it!!

My neuro was not allowed to prescribe it by the legal dept of her

medical group, but now she is sending other people to the dr who

prescribed it for me.

Do what it takes to get your son on this. (I know you will) The

neuros don't know much when it comes to ms.

[Guest guest]

Hi Kim,

Many of us have had a lot more support and help from our PCPs than our

neuros... Here are my suggestions, and I'm sure others will have plenty to

offer you as well.

When you go to see your son's PCP take with you the information from the LDN

site regarding the safety and action of LDN, explain that you are in contact

with a rather large number of people who are using it, some for an extended

period of time, and ask him/her to work with you for at least a three month

trial. Be as factual and unemotional about it as you can, but make it clear

to the doctor that you are very seriously interested in trying this

medication. Stress the fact that the only side effects any of us have seen

are a temporary (for most) increase in leg stiffness and also a temporary

change in sleep habits. Some of us are sleeping much better because we

don't have to get up as often to relieve our bladders, many are waking at

about 2:30 or 3 and have learned to just go back to sleep. My PCP

understood that I wasn't expecting any miracles but he also absolutely

understood my intense desire to try this medication. Especially since your

son is so young I would also stress the importance of first trying this

medication that has no negative effects on quality of life and is so easy to

us as opposed to the ABCRs (most folks in this group refer to them as

" CRABS " ) which have a host of unpleasant side effects for many users.

If you have no success with your PCP other members of the group can help

with the names of other doctors, or doctors who will work with you via

telephone.

Best of luck and please stay with the group. There are a lot of caring

people here who want to help each other and will want to know how things are

going for your son.

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

From: " petessweetheart " <petessweetheart@...>

<low dose naltrexone >

Sent: Sunday, February 29, 2004 6:46 AM

Subject: [low dose naltrexone] Trying to find LDN prescribing doc in Western

KY or TN

> Hi, I am new to this board. I am desperately seeking a doctor in my

> area to prescribe LDN for my 16 year old son, who was diagnosed with

> MS 3 years ago. His neuro has already been asked and has given us an

> idiotic reply by letter that he is " well versed in Naltrexone " but

> goes on to say that it cannot be administered outside a hospital

> setting in the state of Kentucky...Either he is an idiot or believes

> us to be. Regardless, we are in search of another neuro, but would

> like to know if anyone knows of a neuro in this area who is willing

> to prescribe LDN? We are taking him to his PCP this week in an

> effort to get the initial script, but would like to find a neuro who

> will get " on board " with this treatment. Any and all advice would be

> greatly appreciated. Thank you in advance! Have a good day!

>

> Kim

>

>

>

>

>

>

[Guest guest]

Thank you, . That is exactly what we are trying this week.

We're going to ask the PCP to prescribe, and hopefully, he will. My

son had already been down the Avonex road, and after taking for over

a year, had one of the worst exacerbations he has had. Soooooo, he

was switched to Rebif by the neuro, and the injections are just

killing him. Luckily, he doesn't have the flu like symptoms from

them, but the injections themselves are so painful that he can hardly

stand it, and I cry everytime I give him one. Makes for a really

good situation, huh? I will keep you posted, but know that I am very

aggressive, and this WILL happen, even if I have to resort to a phone

consult in order to get the LDN! That is my last choice, but it is

still a choice that I have. Thanks again! Have a good day!

Kim

> Hi Kim,

> Many of us have had a lot more support and help from our PCPs than

our

> neuros... Here are my suggestions, and I'm sure others will have

plenty to

> offer you as well.

>

> When you go to see your son's PCP take with you the information

from the LDN

> site regarding the safety and action of LDN, explain that you are

in contact

> with a rather large number of people who are using it, some for an

extended

> period of time, and ask him/her to work with you for at least a

three month

> trial. Be as factual and unemotional about it as you can, but make

it clear

> to the doctor that you are very seriously interested in trying this

> medication. Stress the fact that the only side effects any of us

have seen

> are a temporary (for most) increase in leg stiffness and also a

temporary

> change in sleep habits. Some of us are sleeping much better

because we

> don't have to get up as often to relieve our bladders, many are

waking at

> about 2:30 or 3 and have learned to just go back to sleep. My PCP

> understood that I wasn't expecting any miracles but he also

absolutely

> understood my intense desire to try this medication. Especially

since your

> son is so young I would also stress the importance of first trying

this

> medication that has no negative effects on quality of life and is

so easy to

> us as opposed to the ABCRs (most folks in this group refer to them

as

> " CRABS " ) which have a host of unpleasant side effects for many

users.

>

> If you have no success with your PCP other members of the group can

help

> with the names of other doctors, or doctors who will work with you

via

> telephone.

>

> Best of luck and please stay with the group. There are a lot of

caring

> people here who want to help each other and will want to know how

things are

> going for your son.

>

>

>

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

> From: " petessweetheart " <petessweetheart@y...>

> <low dose naltrexone >

> Sent: Sunday, February 29, 2004 6:46 AM

> Subject: [low dose naltrexone] Trying to find LDN prescribing doc in

Western

> KY or TN

>

>

> > Hi, I am new to this board. I am desperately seeking a doctor in

my

> > area to prescribe LDN for my 16 year old son, who was diagnosed

with

> > MS 3 years ago. His neuro has already been asked and has given

us an

> > idiotic reply by letter that he is " well versed in Naltrexone " but

> > goes on to say that it cannot be administered outside a hospital

> > setting in the state of Kentucky...Either he is an idiot or

believes

> > us to be. Regardless, we are in search of another neuro, but

would

> > like to know if anyone knows of a neuro in this area who is

willing

> > to prescribe LDN? We are taking him to his PCP this week in an

> > effort to get the initial script, but would like to find a neuro

who

> > will get " on board " with this treatment. Any and all advice

would be

> > greatly appreciated. Thank you in advance! Have a good day!

> >

> > Kim

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Kim,

Sorry to hear about your son. The whole thing can be so

frustrating. I do not know of any doctors in your area but I'll tell

you my story of how I got my script up here in Canada.

I contacted Dr. 's office and would have gone that route as my

neuro and the GPs at the clinic were not agreeable at all. Lack of

clinical trials etc. Instead I went to the ACAM website

(www.acam.org) and did a doctor search and was lucky enough to find a

local doctor. He had never heard of LDN but read over the pages I

printed from the LDN website and was excited about this. Not only

did he give me the script but only charged $20, recommended a local

compounding pharmacy and said he may recommend it to his other

patients. Been on it three weeks now but no real symtom imrovements

but the point is too stop the progression which would make me very

happy. I even got up enough nerve to stop using the Avonex. A lot

of stress right now and no relapse so I have to attribute this to the

LDN.

Hope this helps,

> Hi, I am new to this board. I am desperately seeking a doctor in my

> area to prescribe LDN for my 16 year old son, who was diagnosed

with

> MS 3 years ago. His neuro has already been asked and has given us

an

> idiotic reply by letter that he is " well versed in Naltrexone " but

> goes on to say that it cannot be administered outside a hospital

> setting in the state of Kentucky...Either he is an idiot or

believes

> us to be. Regardless, we are in search of another neuro, but would

> like to know if anyone knows of a neuro in this area who is willing

> to prescribe LDN? We are taking him to his PCP this week in an

> effort to get the initial script, but would like to find a neuro

who

> will get " on board " with this treatment. Any and all advice would

be

> greatly appreciated. Thank you in advance! Have a good day!

>

> Kim