Re: LDN not for me, it seems.

[Guest guest]

Have never experienced nausea with MS so of no help.

My prayers are with you and all trying to live with

courage and good heart. God Bless. Shirley, Oregon

--- crispyparis <crispy51@...> wrote:

> Hi to all

> It's bad news for me yet again with the LDN, I've

> had to give up for

> the fourth time. I don't want to put anybody off the

> idea of trying

> it, but all you seem to hear are the success

> stories. I thought it

> may help folks to hear both sides of things before

> making a decision.

>

> The online survey is probably useful in reaching a

> decision, but I

> wonder how many people bother to go back and

> complete it, if they

> don't get on with LDN, just a thought.

>

> I can only see one improvement since taking it, and

> that is only

> having to get up once a night, rather than up to

> five times. If the

> side effects of using LDN were insignificant, then

> that benefit alone

> would be worth taking it for, but that has not been

> the case for me.

>

> I've had no trouble getting to sleep on LDN, or

> before it, in fact

> while on it, I have been falling asleep in my chair

> several times a

> day. After the first few days of taking it, I have

> just felt

> nauseous, extremely weak, had multiple headaches and

> been generally

> unwell.

>

> I've had two serious attempts using 3mg with a two

> week period of

> 1.5mg in between them. Both dosages seemed to have

> pretty much the

> same effect on me.

>

> For those of you already taking LDN, and showing

> good results, then

> I'm really pleased for you. For those hoping to try

> it, I wish you

> every success. This is clearly yet another example

> of how MS is so

> different for different folks.

>

> All the best,

> P

>

>

__________________________________________________

[Guest guest]

Shirley,

unfortunately I have experienced the same as you. I

tried ldn 3 different times at 1.75 and couldnt get

beyond the nausea, headaches flu like symptoms and I

have no bladder problems but everytime I went on ldn i

had to get up at night two uti's and I have never had

those problems before or since ldn. so..... i am

thankful that it is helping most. i have ppms with

little disability at this time. looking into cord stem

cell.

pam from michigan

--- Shirley Lotz <shylotz@...> wrote:

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

Have never experienced nausea with MS so of no help.

My prayers are with you and all trying to live with

courage and good heart. God Bless. Shirley, Oregon

--- crispyparis <crispy51@...> wrote:

> Hi to all

> It's bad news for me yet again with the LDN, I've

> had to give up for

> the fourth time. I don't want to put anybody off the

> idea of trying

> it, but all you seem to hear are the success

> stories. I thought it

> may help folks to hear both sides of things before

> making a decision.

>

> The online survey is probably useful in reaching a

> decision, but I

> wonder how many people bother to go back and

> complete it, if they

> don't get on with LDN, just a thought.

>

> I can only see one improvement since taking it, and

> that is only

> having to get up once a night, rather than up to

> five times. If the

> side effects of using LDN were insignificant, then

> that benefit alone

> would be worth taking it for, but that has not been

> the case for me.

>

> I've had no trouble getting to sleep on LDN, or

> before it, in fact

> while on it, I have been falling asleep in my chair

> several times a

> day. After the first few days of taking it, I have

> just felt

> nauseous, extremely weak, had multiple headaches and

> been generally

> unwell.

>

> I've had two serious attempts using 3mg with a two

> week period of

> 1.5mg in between them. Both dosages seemed to have

> pretty much the

> same effect on me.

>

> For those of you already taking LDN, and showing

> good results, then

> I'm really pleased for you. For those hoping to try

> it, I wish you

> every success. This is clearly yet another example

> of how MS is so

> different for different folks.

>

> All the best,

> P

>

>

__________________________________________________

[Guest guest]

I had mild nausea in the beginning. I even lost a few pounds... I wish I were STILL losing weight.

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

From: Shirley Lotz

low dose naltrexone

Sent: Monday, July 12, 2004 12:51 AM

Subject: Re: [low dose naltrexone] LDN not for me, it seems.

Have never experienced nausea with MS so of no help. My prayers are with you and all trying to live withcourage and good heart. God Bless. Shirley, Oregon--- crispyparis <crispy51@...> wrote:> Hi to all> It's bad news for me yet again with the LDN, I've> had to give up for > the fourth time. I don't want to put anybody off the> idea of trying > it, but all you seem to hear are the success> stories. I thought it > may help folks to hear both sides of things before> making a decision.> > The online survey is probably useful in reaching a> decision, but I > wonder how many people bother to go back and> complete it, if they > don't get on with LDN, just a thought.> > I can only see one improvement since taking it, and> that is only > having to get up once a night, rather than up to> five times. If the > side effects of using LDN were insignificant, then> that benefit alone > would be worth taking it for, but that has not been> the case for me.> > I've had no trouble getting to sleep on LDN, or> before it, in fact > while on it, I have been falling asleep in my chair> several times a > day. After the first few days of taking it, I have> just felt > nauseous, extremely weak, had multiple headaches and> been generally > unwell.> > I've had two serious attempts using 3mg with a two> week period of > 1.5mg in between them. Both dosages seemed to have> pretty much the > same effect on me.> > For those of you already taking LDN, and showing> good results, then > I'm really pleased for you. For those hoping to try> it, I wish you > every success. This is clearly yet another example> of how MS is so > different for different folks.> > All the best,> P> > __________________________________________________

[Guest guest]

- thanks for your update; it is good to hear from people who are not doing well with LDN, but as I read your email I had the following thoughts:

[Aside to the group: please don't bombard me with hate mail responses! I am not in any way trying to attack Chris! I did not try ldn because of any "success" stories in this group, but the group has a wealth of information. If we are not free to "probe deeper" in response to any post, the value of this group is vastly diminished, because an initial post often is not the complete story.]

1. Were you on one of the CRABS before trying LDN? Could your side effects be related to withdrawal from one of them?

Or from something else? Unfortunately, since we are all different, we almost need to know each person's "history" in order

to evaluate whether LDN is likely causing effects.

Since Dr. Bihari is following over 10,000 individuals using ldn and these side effects don't seem to be appearing anywhere

else, I would almost suspect that there is another cause.

It seems to me it would be unfortunate to give up on ldn without thoroughly investigating other possible causes of your side effects.

(Have you been to the Best Bet diet website to look at possible diet issues?)

2. What improvement were you expecting to "see" ? The primary impact of ldn is simply to stop further progression; how do you "see"

that?

3. I cannot tell how long you were on ldn and at what dosage from your post - was it 3 mg for a month and then 2 weeks at 1.5 mg?

How many months did you try it before stopping? I have noted with interest the "experimenting" people seem to be doing with dosages. I understood from Dr. Bihari's information, including from those who have talked with him personally, that he generally recommends 4.5 mg

with a few people up to 6 mg. He does not follow a days on ldn, then days off cycle - he keeps people on ldn daily. (I understand that

Dr. Lawrence does recommend a days on, days off cycle.)

My point - if you don't follow the recommendations of the Dr. with the most experience with ldn, can you blame the ldn itself for perceived

failures?

4. Maybe someone in this group who is actually seeing Dr. Bihari would be willing to ask about your symptoms?

5. If there are others in the group who have experienced similar side effects, please speak up! It may well be in all our best

interests to determine the cause!

I wish you well, and hope that you find something useful in the above.

,

Portland, OR

On Mon, 12 Jul 2004 06:43:53 -0000 "crispyparis" <crispy51@...> writes: (edited to shorten)

Hi to all,It's bad news for me yet again with the LDN, I've had to give up for the fourth time. I don't want to put anybody off the idea of trying it, but all you seem to hear are the success stories. I thought it may help folks to hear both sides of things before making a decision.I can only see one improvement since taking it, and that is only having to get up once a night, rather than up to five times. If the side effects of using LDN were insignificant, then that benefit alone would be worth taking it for, but that has not been the case for me....After the first few days of taking it, I have just felt nauseous, extremely weak, had multiple headaches and been generally unwell.I've had two serious attempts using 3mg with a two week period of 1.5mg in between them. Both dosages seemed to have pretty much the same effect on me.All the best,P

[Guest guest]

Hi , I'm PPMS and have never been given any drugs before taking

LDN.

> Since Dr. Bihari is following over 10,000 individuals using

ldn and

> these side effects don't seem to be appearing anywhere

> else, I would almost suspect that there is another cause.

>

I have had one response from another PPMS patient who had experienced

many similar problems. That was from a message board with only about

150 members.

> (Have you been to the Best Bet diet website to look at

possible diet

> issues?)

I have read nothing on either LDN site that suggests changing diet

for LDN to work. There is no way I could follow BBD, and I haven't

done for more than 11 years with MS. If I had to stick to the foods

that are suggested, then life truly would not be worth living for me.

> 2. What improvement were you expecting to " see " ?

I, like most people here, am quite capable of reading and researching

the treatment , so I expected nothing, just hoped.

> 3. I cannot tell how long you were on ldn and at what dosage from

your

> post - was it 3 mg for a month and then 2 weeks at 1.5 mg?

I couldn't cope with 3mg for more than a few days when I first tried

it. I then tried 1.5 for two weeks before switching back to 3mg this

last time. I couldn't manage it for more than 10 days.

> My point - if you don't follow the recommendations of the Dr.

with

> the most experience with ldn, can you blame the ldn itself for

perceived

> failures?

I tried to do as Dr.B. advises, there seems to be nowhere available

to report these problems, so maybe there are more folks having

problems.

Thanks for your comments,

P