Re: LDN effects

[Guest guest]

Personally, I would rather rely on individuals personal experiences with LDN rather than a 'so called' expert who has NO personal experience. Even though the results vary from one person to the next, I feel more confident in someone who has been there, done that. It has been my experience that a Neuro is completely useless where Progressive MS is concerned. They don't know anymore than anybody else, and their guess is about as good as anybody elses. A shot in the dark. If you live with MS 24/7, YOU are the EXPERT! Listen to your own body, and do what feels comfortable to YOU. (I know that 'comfort' isn't part of the MS equation, but...) We are pretty much on our own when it comes to LDN, so that is when message boards like this come in handy!

Marcie (PPMS)

In a message dated 4/12/2004 9:07:21 AM Central Standard Time, edith@... writes:

I have ALS and will be starting 3 mg. of LDN today or tomorrow. What concerns me is that since the neuros know little or nothing about this drug, they don't know how to answer the many questions I see on this board about stiffness, sleeplessness and other side effects. We have to rely on others' personal experiences, which as we know are different for each person.

How does one decide whether a side effect is "normal" or if the drug should be stopped? Is it all hit and miss?

Edith

[Guest guest]

My response would be to look for the balance between the inconvenience of

the side effect and the benefit you have derived from the drug. Is the side

effect uncomfortable or threatening to your health? I don't recall hearing

of any side effects that were actually detrimental to overall health.

Surely if anyone has experienced any they will share their story with us?

Best of luck, I sincerely hope LDN will stop your disease progression.

(MS)

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

From: " Edith " <edith@...>

<low dose naltrexone >

Sent: Monday, April 12, 2004 8:01 AM

Subject: [low dose naltrexone] LDN effects

> I have ALS and will be starting 3 mg. of LDN today or tomorrow. What

> concerns me is that since the neuros know little or nothing about

> this drug, they don't know how to answer the many questions I see on

> this board about stiffness, sleeplessness and other side effects. We

> have to rely on others' personal experiences, which as we know are

> different for each person.

>

> How does one decide whether a side effect is " normal " or if the drug

> should be stopped? Is it all hit and miss?

> Edith

>

>

>

>

>

>

[Guest guest]

MS patients generally live with our disease for many years and can develop a feel for the rise and fall of our symptoms and flare ups. ALS patients don't deal with the same time frame or seemingly random appearance of changes. Since the disease progression is different I would think the effectiveness of LDN should be more easily identified. And the stiffness we all complain about seems, so far, to be limited to MS folks. I don't think we can compare the MS experience to what Edith can expect to see. Do we have any ALS people here to help Edith? Wasn't there someone posting something about ALS a while ago???

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

From: marciemjm@...

low dose naltrexone

Sent: Monday, April 12, 2004 8:34 AM

Subject: Re: [low dose naltrexone] LDN effects

Personally, I would rather rely on individuals personal experiences with LDN rather than a 'so called' expert who has NO personal experience. Even though the results vary from one person to the next, I feel more confident in someone who has been there, done that. It has been my experience that a Neuro is completely useless where Progressive MS is concerned. They don't know anymore than anybody else, and their guess is about as good as anybody elses. A shot in the dark. If you live with MS 24/7, YOU are the EXPERT! Listen to your own body, and do what feels comfortable to YOU. (I know that 'comfort' isn't part of the MS equation, but...) We are pretty much on our own when it comes to LDN, so that is when message boards like this come in handy! Marcie (PPMS) In a message dated 4/12/2004 9:07:21 AM Central Standard Time, edith@... writes:

I have ALS and will be starting 3 mg. of LDN today or tomorrow. What concerns me is that since the neuros know little or nothing about this drug, they don't know how to answer the many questions I see on this board about stiffness, sleeplessness and other side effects. We have to rely on others' personal experiences, which as we know are different for each person. How does one decide whether a side effect is "normal" or if the drug should be stopped? Is it all hit and miss? Edith

[Guest guest]

---Yes, you are your own best doctor when it comes to MS. I wish I

had a dollar every time my neuro said I don't know what you mean!

Steve

In low dose naltrexone , marciemjm@a... wrote:

> Personally, I would rather rely on individuals personal experiences

with LDN

> rather than a 'so called' expert who has NO personal experience.

Even though

> the results vary from one person to the next, I feel more confident

in someone

> who has been there, done that. It has been my experience that a

Neuro is

> completely useless where Progressive MS is concerned. They don't

know anymore

> than anybody else, and their guess is about as good as anybody

elses. A shot in

> the dark. If you live with MS 24/7, YOU are the EXPERT! Listen to

your own

> body, and do what feels comfortable to YOU. (I know that 'comfort'

isn't part

> of the MS equation, but...) We are pretty much on our own when it

comes to

> LDN, so that is when message boards like this come in handy!

>

> Marcie (PPMS)

>

>

>

> In a message dated 4/12/2004 9:07:21 AM Central Standard Time,

edith@v...

> writes:

>

>

> > I have ALS and will be starting 3 mg. of LDN today or tomorrow.

What

> > concerns me is that since the neuros know little or nothing about

> > this drug, they don't know how to answer the many questions I see

on

> > this board about stiffness, sleeplessness and other side effects.

We

> > have to rely on others' personal experiences, which as we know

are

> > different for each person.

> >

> > How does one decide whether a side effect is " normal " or if the

drug

> > should be stopped? Is it all hit and miss?

> > Edith

> >

> >

[Guest guest]

The only 'hit or miss' I would think would be whether 3.0 or 4.5 is better for you. The stiffness may go away when you stretch your legs and get those muscles working again. The sleeplessness is an issue for some, but others never slept better or more peacefully, sometimes it's the difference between 3.0 and 4.5 which you have to see for yourself.

Most of those who have experimented between 3.0 and 4.5 have found their best dose and continue to improve.

There's a Fear Factor which many deal with, and that nobody can help overcome, especially if the person already gave up working with LDN.

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

From: Edith

low dose naltrexone

Sent: Monday, April 12, 2004 11:01

Subject: [low dose naltrexone] LDN effects

I have ALS and will be starting 3 mg. of LDN today or tomorrow. What concerns me is that since the neuros know little or nothing about this drug, they don't know how to answer the many questions I see on this board about stiffness, sleeplessness and other side effects. We have to rely on others' personal experiences, which as we know are different for each person.How does one decide whether a side effect is "normal" or if the drug should be stopped? Is it all hit and miss?

[Guest guest]

Hello Edith:

I'm new here, and this is my first time posting. While I am still learning about LDN, I do know a little bit about ALS, because my husband's niece had it and my neighbor's brother has had it for many years. They had trouble with weakness in their arms and legs, so maybe LDN would help by making them stiffer so that it would be easier to walk. The brother of my neighbor has been in remission for over a year now. I hope that you do well with whatever treatment that you choose.

Jan

[Guest guest]

In a message dated 7/21/2005 12:27:24 PM Eastern Daylight Time, brfifield@... writes:

I've been on LDN for almost a week now - increasing slowly as my body doesn't do well adjusting to anything new - even nutritional supplements.

Barb

I don't know about your condition, but I take ldn for MS. It took over 8 months for me to see any benefits from taking it. I kept up b/c of the possibility of it stopping progression, it's main purpose.

I started liquid about 10 days ago. I had been taking 4.5 compounded capsules. I am now taking about 4 ml liquid. I tried 3 ml but was too stiff to function and I still did not sleep well. 4 ml seems to be right for me as far as sleeping and only getting up once during the night. I was getting up 3-4 times on the compounded.

It takes time to figure it out. Maybe someone else can help with more info on your symptoms.

Good luck

Arlene

[Guest guest]

> Hi Everybody,

>

> I've been on LDN for almost a week now - increasing slowly as my body

> doesn't do well adjusting to anything new - even nutritional

> supplements.

>

> I started at 1.5 mg and have worked up to about 2.6 mg. using liquid.

> The first night I slept so poorly, I could not function the next day

> so I skipped the next night's dose but have taken it every night

> since.

>

> Some of the side effects I have been experiencing are dizziness,

> stomach pains, gas, (tried taking with food but seemed to make no

> difference), all over sweating. These seem to be settling down a bit

> over the course of the week. Of course I am sleeping very poorly but

> was expecting that. I do take 5 mg. melatonin at night.

>

> I also have developed facial tics. Again these seem to be settling

> down somewhat. I was increasing .5 mg nightly but was feeling so

> absolutely awful the following day so now am increasing by about .2

> nightly.

>

> I'm wondering if anyone else has experienced similar effects. It is

> only because of the glowing reports here that I persist, in the hopes

> that it might be the answer for me too. I'm not taking LDN for MS as

> many of you are but rather for ME/CFIDS/FMS (Chronic Fatique

> Syndrome/Fibromyalgia).

>

> Barb

==========

Barb,

You might want to stay at 2.5mg for 10 to 14 days or more and then up to 3.0mg

for about a month and up gradually from there. Liquid LDN is potent.

[Guest guest]

Thanks . Your advice always seems sound. I value it.

Barbara

[low dose naltrexone] Re: LDN Effects

> Hi Everybody,> > I've been on LDN for almost a week now - increasing slowly as my body > doesn't do well adjusting to anything new - even nutritional > supplements.> > I started at 1.5 mg and have worked up to about 2.6 mg. using liquid. > The first night I slept so poorly, I could not function the next day > so I skipped the next night's dose but have taken it every night > since.> > Some of the side effects I have been experiencing are dizziness, > stomach pains, gas, (tried taking with food but seemed to make no > difference), all over sweating. These seem to be settling down a bit > over the course of the week. Of course I am sleeping very poorly but > was expecting that. I do take 5 mg. melatonin at night.> > I also have developed facial tics. Again these seem to be settling > down somewhat. I was increasing .5 mg nightly but was feeling so > absolutely awful the following day so now am increasing by about .2 > nightly.> > I'm wondering if anyone else has experienced similar effects. It is > only because of the glowing reports here that I persist, in the hopes > that it might be the answer for me too. I'm not taking LDN for MS as > many of you are but rather for ME/CFIDS/FMS (Chronic Fatique > Syndrome/Fibromyalgia).> > Barb==========Barb,You might want to stay at 2.5mg for 10 to 14 days or more and then up to 3.0mg for about a month and up gradually from there. Liquid LDN is potent.

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[Guest guest]

Thanks so much for your message of hope and encouragement. I'm so happy you are getting results and so much want the same for myself (and my son if it works for me).

Thanks for writing.

Barb

[low dose naltrexone] Re: LDN Effects

I am taking for CFS/FM with amazing improvement. My FM is basically gone withi a week. I am on month 2 and continue to improve. It is a slow process. I had severe sleep trobule which has stopped and now i sleep BETTER. It took a month for that. I alternate my liquid dose between 3.0 and 4.0 or 4.5 every night. I did experience herx's, sort of like fevers, swollen glands, my body started fighting infections. It was very strange. The low dose naltrexone was the turning point in my battle with CFS. The only other things i take are nattokinase, d-fraction, and magnesium/glutathione/b12 injections which i had been taking wit no results anyways.Stick with it, take it at night with nothing else if possible, make sure your dose is between 3.0-4.5 and take sleeping aids if needed causeit did go away for me.JL> Hi Everybody,> > I've been on LDN for almost a week now - increasing slowly as my body > doesn't do well adjusting to anything new - even nutritional > supplements.> > I started at 1.5 mg and have worked up to about 2.6 mg. using liquid. > The first night I slept so poorly, I could not function the next day > so I skipped the next night's dose but have taken it every night > since.> > Some of the side effects I have been experiencing are dizziness, > stomach pains, gas, (tried taking with food but seemed to make no > difference), all over sweating. These seem to be settling down a bit > over the course of the week. Of course I am sleeping very poorly but > was expecting that. I do take 5 mg. melatonin at night.> > I also have developed facial tics. Again these seem to be settling > down somewhat. I was increasing .5 mg nightly but was feeling so > absolutely awful the following day so now am increasing by about .2 > nightly.> > I'm wondering if anyone else has experienced similar effects. It is > only because of the glowing reports here that I persist, in the hopes > that it might be the answer for me too. I'm not taking LDN for MS as > many of you are but rather for ME/CFIDS/FMS (Chronic Fatique > Syndrome/Fibromyalgia).> > Barb

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