Re: Re: For Those About To Try To Get LDN

[Guest guest]

In my previous post I mentioned a patient's guide and doctor's guide

that I have copies of and could email to anyone requiring them. Turns

out I don't need to as today by coincidence someone on the

lowdosenaltrexone group happened to paste up links to them on the internet.

Two things to bear in mind re these pages:

a) they are oriented towards MSers as they are the biggest group of

people with neurological conditions out there. Just take from it the

information not specifically for MS. Note that unlike for PLS there are

four typically prescribed treatments for MS that you will see mentioned

(Avonex, Betaseron, Copaxone and Rebif), but they are expensive and

often have bad side effects. Many MSers have found LDN to be much more

effective than any of these. It is also significantly cheaper and has

none of the bad side effects.

they are one person's " guess " as to what they felt was the best

approach. However, you know the type of approach you feel comfortable

with and hopefully know your doctor well enough to get a feeling for

what you think may work for them. Therefore, do not take the approach

on those links as gospel. Read all the ideas and suggestions and mold

them to develop a strategy you feel most comfortable with.

" How to Talk to Your Doctor about LDN " :

http://gazorpa.com/PatientGuide.html

http://gazorpa.com/DoctorFolder.html

[Guest guest]

, what form are the pills in?

I can swallow the size of aspirin but not capsules. Could capsules be

opened?

Arlene

[Guest guest]

Hi Arlene,

Normally they come in capsules because 3.0mg or 4.5mg of naltrexone is

only a few grains of powder, so it has to be made up by a special type

of pharmacist called a compounding chemist/pharmacist. They have the

specialised equipment to accurately measure such a tiny amount, put it

in a capsule and add a filler to fill the rest of the capsule so it

won't just collapse. Fillers is something I will discuss when people

are nearer ready to have their script made up.

Being in capsule form you can easily open them up and empty the (bitter

tasting) contents into a glass of liquid or onto food or however you

best like to take it.

One point worth considering - the optimum dose is meant to be 4.5mg per

day but it is recommended that people build up to that. A very useful

approach is therefore to initially have them made up as 1.5mg capsules.

That way if you want to start super slow you just take one capsule

(1.5mg). Most people start at 3.0mg, so just take 2 capsules. Once you

feel acclimatised to that you can take 3 capsules to give the full

4.5mg, although some people (more men than women!!) find they have to

stick to 3.0mg to avoid feeling too stiff.

Anything more than 4.5mg is considered potentially counterproductive

because the aim is to blockade the opioid receptors for about 2 hours

which then causes an increase in production of the good guys endorphin

and enkephalin (see

http://www.ldninfo.org/index.htm#What_is_low_dose_naltrexone). More

causes a longer blockade which can be counterproductive. Check with

whoever writes the script as to whether they need to write the script as

actual 1.5mg capsules or whether they feel they can write it as 3.0mg or

4.5mg and allow the pharmacist to make it up as 1.5mg capsules. Once

you have been on it for a while and worked out which dose suits you, you

can then get future capsules made up in that size if you prefer.

You can also have LDN made up as a liquid by the compounding pharmacy,

although I gather that the shelf life of the liquid form is only about a

month.

Some people also just buy it as the 50mg ReVia (naltrexone) tablets as

prescribed for drug addiction and very carefully measure out their own

by crushing half a tablet at a time in a known quantity of distilled

water eg 250ml. That means 1gm of naltrexone for every 10ml of water,

making it easy to vary your dose eg for 3.0mg measure out 30ml of

solution (shaken well of course), for 4.5mg measure out 45ml of water

solution. That is certainly the cheapest solution because then you

aren't paying for someone to compound it, but you have to be confident

in your calculating and measuring ability. :-)

Don't worry about finding a compounding chemist as there are a couple of

recommended ones who post all over the US and make it up more cheaply

than most local places. Compounding LDN seems to be an art and there

have been quite a few stories of people who used someone local who had

little or no experience with LDN and they didn't feel it was working for

them. They then changed to one of the recommended places and almost

immediately noticed the difference. I myself use the most recommended

place here in Australia even though they are 600 miles away in another

state. They post it to me for $5 - that's less than it used to cost me

in petrol to get to where I first got it from and they charge almost

half the price for LDN that the first place did!

Sorry, I have gone overboard and answered much more than your question

but it is all information people need to know if they haven't yet

checked out www.lowdosenaltrexone.org, plus a lot of it is what I have

gleaned over the past two years and is not specifically on that site.

riddlea@... wrote:

> , what form are the pills in?

> I can swallow the size of aspirin but not capsules. Could capsules be

> opened?

> Arlene

[Guest guest]

Hi ,

Well, think I bombed on getting the LDN.

The neuro was, to me, distracted when he came in. Got in 30 min early,

but he seemed in hurry.

I gave him the papers I had carried and tried to explain but not much

success. Hubby really messed me up by mentioning stem cell. From there

it went downhill with the neuro giving hubby a website to look up.

Ended up being Quackwatch. I tried to explain very little money was

involved for the meds and wasn't a question of someone making money. He

said he never heard of those pharmacies in Fla. See what a mess it was.

With bad speech the more I tried to explain the worse the speech.

Anyway, he said he would check into it and let me know. That was 8 days

ago.....

He said he used to run a MS clinic and their symptoms come and go so

fast that they would not be able to tell what was helping.

I go to primary dr. in 2 months and he will write it I feel sure.

Neuro didn't do much. The vibrator thing on the ankle and tell him when

he stops, looking to right and left, up and down. The Hoffman where

they flip your fingers. The sign was positive for me same as the other

times. He said a positive Hoffman means you don't have Multiple System

Atrophy. Said I was very stiff (and I paid to be told that? LOL). Back

in 6 months.

Appreciate all the help. Haven't given up yet.

Oh, I told him a few on the PLS site had developed ALS and he said their

PLS didn't change to ALS they had it to begin with.

Hope things are fine in your side of the world.

Smiles to you,

Arlene

[Guest guest]

Hi Arlene,

Sorry to hear that but par for the course for neuros I'm afraid. There

are a few now prescribing it because one of their patients did manage

eventually to talk them into it and once they saw how it helped they

then started prescribing it for others. By coincidence I just read an

email along those lines on the lowdosenaltrexone group so will go back

and find it and forward it on. These sort of emails come up every now

and again.

As for pointing you to Quackwatch - what a joke!!! .......

(unfortunately). He should be on it himself for not providing you a

good service - being distracted and not listening to what you had to

say, although in reality that is a common trait amongst neuros who often

arrogantly think they are godlike. That's why apart from having to see

one once about 8 years ago in order to be able to see the speech

therapist I was recommended to, I have not seen a neuro for 11 years.

If I had listened to them I would have been in a wheelchair many years

ago. Instead I am still walking (admittedly with walking frame),

working full time and driving. Basically due to antioxidants (which

they pooh-poohed) and now LDN my condition has changed very little for

the past 8 years, whereas for the first 5 years before that I progressed

relatively quickly.

I always feel you are likely to have much more success with a GP,

especially if you have been seeing them for a while and they have an

ounce of compassion and human decency instead of just merrily consigning

you to continue to lose function. Any doctor (neuro or otherwise) who

is prepared to just stand by and let you decline into increasing

helplessness without at least letting you try something which could well

slow or stop your progression, and possibly even give you some

improvement, does not deserve to be called a human being. Good luck

with it!!

If worst comes to worst there are always places like Medmex who sell it

without prescription, but there is a possible slight question mark over

the quality of some of their meds. I don't believe they are dangerous,

just that they may not be as effective as they should be.

Regards,

riddlea@... wrote:

> Hi ,

>

> Well, think I bombed on getting the LDN.

> The neuro was, to me, distracted when he came in. Got in 30 min early,

> but he seemed in hurry.

> I gave him the papers I had carried and tried to explain but not much

> success. Hubby really messed me up by mentioning stem cell. From there

> it went downhill with the neuro giving hubby a website to look up.

> Ended up being Quackwatch. I tried to explain very little money was

> involved for the meds and wasn't a question of someone making money. He

> said he never heard of those pharmacies in Fla. See what a mess it was.

> With bad speech the more I tried to explain the worse the speech.

> Anyway, he said he would check into it and let me know. That was 8 days

> ago.....

> He said he used to run a MS clinic and their symptoms come and go so

> fast that they would not be able to tell what was helping.

> I go to primary dr. in 2 months and he will write it I feel sure.

> Neuro didn't do much. The vibrator thing on the ankle and tell him when

> he stops, looking to right and left, up and down. The Hoffman where

> they flip your fingers. The sign was positive for me same as the other

> times. He said a positive Hoffman means you don't have Multiple System

> Atrophy. Said I was very stiff (and I paid to be told that? LOL). Back

> in 6 months.

> Appreciate all the help. Haven't given up yet.

> Oh, I told him a few on the PLS site had developed ALS and he said their

> PLS didn't change to ALS they had it to begin with.

> Hope things are fine in your side of the world.

> Smiles to you,

> Arlene

[Guest guest]

......... and as a consequence had liver failure.

Whoa!! What absolute poppycock!! Sure, the person may have suffered

liver failure but not due to LDN!

Naltrexone has been considered to POSSIBLY lead to liver problems BUT AT

A WHOPPING 300MG PER DAY!! We only take 3.0 or 4.5g per day, a tiny,

tiny fraction of that (hence LOW DOSE naltrexone).

Even at the normal rate of 50mg per day as used for naltrexone's

original purpose of combatting drug dependence it is not considered a

liver problem. We are taking only a fraction of even that amount!

If you look up baclofen and especially things like Dantrium which many

neuros prescribe for conditions such as PLS and MS you will see that it

is THEY that are bad for the liver. What an a...hole he was for trying

to scare you off with such outrageous lies when in all likelihood it was

SOMETHING THAT HE PRESCRIBED which caused the damage!!

It really makes me angry (as you can probably tell! :-) ) that those

meglomaniacs can look at us sitting there with major problems and say to

us " No, bad luck chump. This may help you as it has helped many others

but I am NOT going to give it to you, so there!! Suffer!! " . What the

bloody hell gives them the right to deny us something with huge

potential to help? If only they were in our position instead of toying

with our lives..........

Dr Bihari, who pioneered the use of LDN has I believe been using it

himself for something like 20 years and there are plenty of us who have

been using it for over 2 years now.

If need be I can give you the name of a lady doctor in Sydney who I know

has prescribed LDN for someone on Ozpals.

Maureen wrote:

> I bombed out on trying to get LDN also when I saw my neuro last week

> He told me that if I wanted to I could get it myself from the US

> but to be careful with it as he attended a patient who had

> administered LDN himself and as a consequence had liver failure.

>

> This is the second time that a neurologist has dismissed LDN

> unfortunately.

>

> Aussie Maureen

[Guest guest]

See my previous response. He's an absolute scaremongering a...hole I'm

sorry to say......... That's when you need to pull out the information

I suggested taking and show him the bit which mentions potential liver

problems (not kidney) at a whopping 300mg per day, 100 or so times more

than we take!!

Anything taken to excess is dangerous. You only need to drink a few

times too much water, the most essential thing to us besides air, to

begin having major problems.

dianamj_canuck wrote:

> Yes...my neuro said he was warey and couldn't be responsible for any

> damage that might occur...he also mentioned liver and kidnies.

> So...no help from him!

>

> Hugs

>

> Di

[Guest guest]

I have been on LDN for over a year. My urinary urgency disappeared

instantly when I started. My left arm was going downhill rapidly and has

since stabilized and there has been no further progression. My legs have

deteriorated somewhat since, but nowhere near as fast as they were. I have

had no side effects whatsoever.

Any neuro who refuses to recommend LDN is incompetent and uninformed and

should be taken out and shot immediately. They are guilty of the highest

form of malpractice and you need to find a more competant, intelligent and

caring doctor.

I guess you can tell how I feel about LDN. I have tried damn near

everything, although I have no insurance, and it has been the ONLY thing

that has helped. I thank God every day for my neuro, Dr. Hassouri at UPMC.

Gene

>

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>

>Hi Arlene,

>

>Sorry to hear that but par for the course for neuros I'm afraid. There

>are a few now prescribing it because one of their patients did manage

>eventually to talk them into it and once they saw how it helped they

>then started prescribing it for others. By coincidence I just read an

>email along those lines on the lowdosenaltrexone group so will go back

>and find it and forward it on. These sort of emails come up every now

>and again.

>

>As for pointing you to Quackwatch - what a joke!!! .......

>(unfortunately). He should be on it himself for not providing you a

>good service - being distracted and not listening to what you had to

>say, although in reality that is a common trait amongst neuros who often

>arrogantly think they are godlike. That's why apart from having to see

>one once about 8 years ago in order to be able to see the speech

>therapist I was recommended to, I have not seen a neuro for 11 years.

>If I had listened to them I would have been in a wheelchair many years

>ago. Instead I am still walking (admittedly with walking frame),

>working full time and driving. Basically due to antioxidants (which

>they pooh-poohed) and now LDN my condition has changed very little for

>the past 8 years, whereas for the first 5 years before that I progressed

>relatively quickly.

>

>I always feel you are likely to have much more success with a GP,

>especially if you have been seeing them for a while and they have an

>ounce of compassion and human decency instead of just merrily consigning

>you to continue to lose function. Any doctor (neuro or otherwise) who

>is prepared to just stand by and let you decline into increasing

>helplessness without at least letting you try something which could well

>slow or stop your progression, and possibly even give you some

>improvement, does not deserve to be called a human being. Good luck

>with it!!

>

>If worst comes to worst there are always places like Medmex who sell it

>without prescription, but there is a possible slight question mark over

>the quality of some of their meds. I don't believe they are dangerous,

>just that they may not be as effective as they should be.

>

>Regards,

>

>

>riddlea@... wrote:

>

> > Hi ,

> >

> > Well, think I bombed on getting the LDN.

> > The neuro was, to me, distracted when he came in. Got in 30 min early,

> > but he seemed in hurry.

> > I gave him the papers I had carried and tried to explain but not much

> > success. Hubby really messed me up by mentioning stem cell. From there

> > it went downhill with the neuro giving hubby a website to look up.

> > Ended up being Quackwatch. I tried to explain very little money was

> > involved for the meds and wasn't a question of someone making money. He

> > said he never heard of those pharmacies in Fla. See what a mess it was.

> > With bad speech the more I tried to explain the worse the speech.

> > Anyway, he said he would check into it and let me know. That was 8 days

> > ago.....

> > He said he used to run a MS clinic and their symptoms come and go so

> > fast that they would not be able to tell what was helping.

> > I go to primary dr. in 2 months and he will write it I feel sure.

> > Neuro didn't do much. The vibrator thing on the ankle and tell him when

> > he stops, looking to right and left, up and down. The Hoffman where

> > they flip your fingers. The sign was positive for me same as the other

> > times. He said a positive Hoffman means you don't have Multiple System

> > Atrophy. Said I was very stiff (and I paid to be told that? LOL). Back

> > in 6 months.

> > Appreciate all the help. Haven't given up yet.

> > Oh, I told him a few on the PLS site had developed ALS and he said their

> > PLS didn't change to ALS they had it to begin with.

> > Hope things are fine in your side of the world.

> > Smiles to you,

> > Arlene

>

>

>

>

>

>

[Guest guest]

A man after my own heart!! :-) Great that it has helped so far Gene

and possibly the deterioration in your legs may slow down further with

continued use.

As I think I have said before, it absolutely staggers me that everyone

on here whose condition is progressing isn't out there trying to get

it. There is nothing else out there which can even slow, let alone stop

what we have as LDN might. It is cheap (less than $1 per day for me),

most people have no side effects or only minor ones such as a bit of

insomnia for a few days (the only people I have read of who have had

anything more eg nausea are people who have problems with almost

everything) and is working for a large proportion of people.

Is the conclusion to be drawn that those who don't try to get it have

accepted their slide into helplessness as inevitable and have given up,

or that being disabled is actually a positive because they have to do

very little or nothing and others get to look after them? I am

puzzled..............

Eugene A. Secor wrote:

> I have been on LDN for over a year. My urinary urgency disappeared

> instantly when I started. My left arm was going downhill rapidly and has

> since stabilized and there has been no further progression. My legs have

> deteriorated somewhat since, but nowhere near as fast as they were. I

> have

> had no side effects whatsoever.

>

> Any neuro who refuses to recommend LDN is incompetent and uninformed and

> should be taken out and shot immediately. They are guilty of the highest

> form of malpractice and you need to find a more competant, intelligent

> and

> caring doctor.

>

> I guess you can tell how I feel about LDN. I have tried damn near

> everything, although I have no insurance, and it has been the ONLY thing

> that has helped. I thank God every day for my neuro, Dr. Hassouri at

> UPMC.

>

> Gene

[Guest guest]

This is the reason Fink needs to teach these other Neuros so they can

all get on the same page

Re: Re: For Those About To Try To Get LDN

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>

>Hi Arlene,

>

>Sorry to hear that but par for the course for neuros I'm

afraid. There

>are a few now prescribing it because one of their patients did

manage

>eventually to talk them into it and once they saw how it helped

they

>then started prescribing it for others. By coincidence I just

read an

>email along those lines on the lowdosenaltrexone group so will go

back

>and find it and forward it on. These sort of emails come up

every now

>and again.

>

>As for pointing you to Quackwatch - what a joke!!! .......

>(unfortunately). He should be on it himself for not providing

you a

>good service - being distracted and not listening to what you had

to

>say, although in reality that is a common trait amongst neuros who

often

>arrogantly think they are godlike. That's why apart from

having to see

>one once about 8 years ago in order to be able to see the speech

>therapist I was recommended to, I have not seen a neuro for 11

years.

>If I had listened to them I would have been in a wheelchair many

years

>ago. Instead I am still walking (admittedly with walking

frame),

>working full time and driving. Basically due to antioxidants

(which

>they pooh-poohed) and now LDN my condition has changed very little

for

>the past 8 years, whereas for the first 5 years before that I

progressed

>relatively quickly.

>

>I always feel you are likely to have much more success with a

GP,

>especially if you have been seeing them for a while and they have

an

>ounce of compassion and human decency instead of just merrily

consigning

>you to continue to lose function. Any doctor (neuro or

otherwise) who

>is prepared to just stand by and let you decline into increasing

>helplessness without at least letting you try something which could

well

>slow or stop your progression, and possibly even give you some

>improvement, does not deserve to be called a human being.

Good luck

>with it!!

>

>If worst comes to worst there are always places like Medmex who

sell it

>without prescription, but there is a possible slight question mark

over

>the quality of some of their meds. I don't believe they are

dangerous,

>just that they may not be as effective as they should be.

>

>Regards,

>

>

>riddlea@... wrote:

>

> > Hi ,

> >

> > Well, think I bombed on getting the LDN.

> > The neuro was, to me, distracted when he came in. Got

in 30 min early,

> > but he seemed in hurry.

> > I gave him the papers I had carried and tried to explain but

not much

> > success. Hubby really messed me up by mentioning stem

cell. From there

> > it went downhill with the neuro giving hubby a website to

look up.

> > Ended up being Quackwatch. I tried to explain very

little money was

> > involved for the meds and wasn't a question of someone making

money. He

> > said he never heard of those pharmacies in Fla. See

what a mess it was.

> > With bad speech the more I tried to explain the worse the

speech.

> > Anyway, he said he would check into it and let me know.

That was 8 days

> > ago.....

> > He said he used to run a MS clinic and their symptoms come

and go so

> > fast that they would not be able to tell what was helping.

> > I go to primary dr. in 2 months and he will write it I feel

sure.

> > Neuro didn't do much. The vibrator thing on the ankle

and tell him when

> > he stops, looking to right and left, up and down. The

Hoffman where

> > they flip your fingers. The sign was positive for me

same as the other

> > times. He said a positive Hoffman means you don't have

Multiple System

> > Atrophy. Said I was very stiff (and I paid to be told

that? LOL). Back

> > in 6 months.

> > Appreciate all the help. Haven't given up yet.

> > Oh, I told him a few on the PLS site had developed ALS and he

said their

> > PLS didn't change to ALS they had it to begin with.

> > Hope things are fine in your side of the world.

> > Smiles to you,

> > Arlene

>

>

>

>

>

>

[Guest guest]

I think you are on a different page to us......... What has Dr Fink got

to do with Dr Hassouri or LDN which is what Gene was talking about? Or

is Dr Fink one of the good guys who will prescribe LDN?

bthompson2@... wrote:

> This is the reason Fink needs to teach these other Neuros so they can

> all get on the same page

>

> Re: Re: For Those About To Try To Get LDN

> To: PLS-FRIENDS

>

>

>

>

> I have been on LDN for over a year. My urinary urgency

> disappeared

> instantly when I started. My left arm was going downhill rapidly

> and has

> since stabilized and there has been no further progression. My

> legs have

> deteriorated somewhat since, but nowhere near as fast as they

> were. I have

> had no side effects whatsoever.

>

> Any neuro who refuses to recommend LDN is incompetent and uninformed

> and

> should be taken out and shot immediately. They are guilty of the

> highest

> form of malpractice and you need to find a more competant, intelligent

> and

> caring doctor.

>

> I guess you can tell how I feel about LDN. I have tried damn near

>

> everything, although I have no insurance, and it has been the ONLY

> thing

> that has helped. I thank God every day for my neuro, Dr. Hassouri

> at UPMC.

>

> Gene

[Guest guest]

OK, sorry, I see where you are coming from now but in your previous two

posts I couldn't see any connection between what you wrote and what had

been discussed before that. Apologies. :-)

I gather that we in Australia aren't all that far behind on suing over

anything and everything. I can see both sides but it is very

unfortunate that doctors are now too scared to think outside the square

or even accept evidence put before them unless as you say it comes from

some leading authority - we all know how few of them there are on PLS!

We know more about it through this group than 95% of neuros (or maybe

that should be 99% or more). That's why basically I haven't bothered to

see a neuro in 10+ years.

bthompson2@... wrote:

> The problem is, we trust that our Neuros know what the Hell they

> are doing. Because they don't have a leading authority who actually

> studies this stuff guiding them and releasing articles about our

> diseases and some of the possible meds out there, our docs are scared

> to try something, plus they are afraid of being sued. Americans LOVE to

> sue over anything.Malpractice insurance cost are outrageous for some

> doctors to where they would rather work for a partnership than private

> practice. Plus because our disease is so " Rare " alot of the neuros

> don't know what PLS is and that's why we are diagnost with other

> diseases before we get this one. Again, not picking on Dr. Fink, but

> because he is the " leading authority " on this disease, he needs to get

> the word out there so these doctors can get educated about this

> stuff.THERE WILL NEVER BE A CURE UNLESS ENOUGH DOCTORS GET ON BOARD AND

> MADE AWARE THAT PLS IS A DISEASE!!!!

[Guest guest]

I have no idea what Dr. Fink's view is on LDN. My rx is from Dr. Hassouri.

Gene