Re: LDN initial side effects

[Guest guest]

, I just started taking LDN a week ago. I'm taking 3mg liquid each night. I'm happy to say so far I have not had any negative side effects. I've noticed an increase in energy. My balance problems seem to be improving. I'm still taking my daily shots of Copaxone. Pins and needles in my feet have all but gone. I can walk farther than I could two weeks ago. I'm Happy! Good luck! Ed <sucre3@...> wrote: Dear all We are a Spanish family that are just about to try LDN for a young male with ataxia symptoms (equilibrium, stability and lower limb coordination severely affected). He has

movility but requires external aid (one cross), and can walk only for a while. We have joined the discussion group and have realized that there are quite a lot of first time side effects both associated to filler-sensitivities and dose levels. Because we cannot count on expert supervision on the use of LDN in Spain , I wished I could ask two things: 1) is a 3.0 mg dose seem to be working better for males and 4.5 mg for females? (I read this somewhere) (should we start with 3.mg and then decide whether to move to 4.5mg or stay there?), 2) could I hear from people who are taking ldn and had had no initial side effects? (is everyone experimenting some kind of effect? (spasticity, tremors,headache, bizarre dreams and sleep disturbances,diuretic effects of Ldn,...)? Does anyone have a list of initial side effects that we could read?. I will

try to make one in a near future myself and make it available. thank you

Relax. virus scanning helps detect nasty viruses!

[Guest guest]

, First I would like to commend you on your excellent English! I lived in Spain for ten years, in Valencia, I miss it sometimes. Where are you?

Second, I have seen no such list and think it would be excellent if you did compose one, or if you find one, Please pass it on. I will be starting LDN very soon and such a list would be of interest to me, and I'm sure to others as well that might be new to LDN.

Also. To answer your question #1, yes, that is what I have heard as well.

Saludos!

Akiba

Pragmatic Visionary

Thy Feet, My Feet

Dance the Dance of Divinity

http://www.twinflames.com

-- [low dose naltrexone] LDN initial side effects

Dear all

We are a Spanish family that are just about to try LDN for a young male with ataxia symptoms (equilibrium, stability and lower limb coordination severely affected). He has movility but requires external aid (one cross), and can walk only for a while. We have joined the discussion group and have realized that there are quite a lot of first time side effects both associated to filler-sensitivities and dose levels. Because we cannot count on expert supervision on the use of LDN in Spain , I wished I could ask two things:

1) is a 3.0 mg dose seem to be working better for males and 4.5 mg for females? (I read this somewhere) (should we start with 3.mg and then decide whether to move to 4.5mg or stay there?),

2) could I hear from people who are taking ldn and had had no initial side effects? (is everyone experimenting some kind of effect? (spasticity, tremors,headache, bizarre dreams and sleep disturbances,diuretic effects of Ldn,...)?

Does anyone have a list of initial side effects that we could read?. I will try to make one in a near future myself and make it available.

thank you

[Guest guest]

Hi ..

I am stepping in for for a day or two ..

Answer to Q1 .. straight from the LDN site

People who have multiple sclerosis that has led to muscle spasms are

advised to begin LDN treatment with just 3mg daily and to maintain

that dosage.

Patients who are exposed to undue fatigue, heat, or a febrile

illness may demonstrate a recurrence of prior symptoms, stemming

from an area of old neurologic involvement. These areas tend to have

increased irritability of nervous tissue surrounding old healed MS

scars ( " plaques " ). Such an episode may be very transient and may not

represent a true relapse.

RE Male/female issue .. it seems that men do better on the 3mg dose

but we have nothing concret to back that up .. just keep it in

mind .. my husband however is on 4.5mg .. he started at that dose

and never looked back.

Answer to Q2.... Very difficult .. My husband never had one side

effect. He has ppms. My uncle (Parkinsons) and Mom (Breast Cancer)

never had any side effects either. Actually most of my contacts have

not had any side effects but i have had heard from about 20 people

who have had definite side effects. I am in touch with nearly 300

people and I would say that 20 have had definite issues. For such

people this advice has worked for some and not others ...

a. change pharmacy

b. use liquid ldn

c. make sure liquid ldn is made from pure naltrexone

d. test for candida and get rid of it

e. ride the wave

f. experiment with dosage

e. question if you are running another underlying infection eg dental

f. question initial diagnosis

BUT

Don't give up .. LDN works .. sometimes it needs to be tailored to

the individual .. but it does work. It is the best weapon we have to

fight many monsters.

While i am here .. i also think this .. and it was mentioned at the

LDN conference 2005 but this theory is holding true in my

experience .. one third of people who take LDN are immediate

responders who have a life changing experience, one third are people

who try it and are not sure if they are better or not but close

relatives tell them they look better, and one third have no sense

that they ever even swallowed a pill .. 2 years later however ..

none of them have progressed .. that is the ultimate bottom line and

objective that must always be clear. Not progressing is the cake.

Improvements are the cream.

All the Best

--- In low dose naltrexone , <sucre3@...>

wrote:

>

> Dear all

>

> We are a Spanish family that are just about to try LDN for a young

male with

> ataxia symptoms (equilibrium, stability and lower limb

coordination severely

> affected). He has movility but requires external aid (one cross),

and can

> walk only for a while. We have joined the discussion group and

have realized

> that there are quite a lot of first time side effects both

associated to

> filler-sensitivities and dose levels. Because we cannot count on

> expert supervision on the use of LDN in Spain , I wished I could

ask two

> things:

>

> 1) is a 3.0 mg dose seem to be working better for males and 4.5 mg

for

> females? (I read this somewhere) (should we start with 3.mg and

then decide

> whether to move to 4.5mg or stay there?),

>

> 2) could I hear from people who are taking ldn and had had no

initial side

> effects? (is everyone experimenting some kind of effect?

(spasticity,

> tremors,headache, bizarre dreams and sleep disturbances,diuretic

effects of

> Ldn,...)?

>

> Does anyone have a list of initial side effects that we could

read?. I will

> try to make one in a near future myself and make it available.

>

> thank you

>

[Guest guest]

One more thing .. I have kids running around junked up on valentines

sugar heart candy but .. changing filler has also fixed problems for

some. I am switching my Mom to 4.5mg lactose filler, from calcium

carbonate filler, to see if that makes a difference. Please God it

will. nothing is certain. While i am here these are some other

observations on LDN ..

1. Radid hair growth

2. Rapid nail growth

3. Excessive facial hair (not good for wone)

4. increased or decreased libido

5. weight loss or weight gain

6. Increased energy

7. Increased/decreased sense of well being

8. increased mental concentration and stamina to complete specific

project

that is all i can think of .. but overall .. the side effects of LDN

in general seem to be very positive .. for the majority .. but not

for all.

All the best

Shameless Plug .. buy the Book Up the Creek with a Paddle .. from

amazon.com etc. etc. etc....

> >

> > Dear all

> >

> > We are a Spanish family that are just about to try LDN for a

young

> male with

> > ataxia symptoms (equilibrium, stability and lower limb

> coordination severely

> > affected). He has movility but requires external aid (one

cross),

> and can

> > walk only for a while. We have joined the discussion group and

> have realized

> > that there are quite a lot of first time side effects both

> associated to

> > filler-sensitivities and dose levels. Because we cannot count on

> > expert supervision on the use of LDN in Spain , I wished I could

> ask two

> > things:

> >

> > 1) is a 3.0 mg dose seem to be working better for males and 4.5

mg

> for

> > females? (I read this somewhere) (should we start with 3.mg and

> then decide

> > whether to move to 4.5mg or stay there?),

> >

> > 2) could I hear from people who are taking ldn and had had no

> initial side

> > effects? (is everyone experimenting some kind of effect?

> (spasticity,

> > tremors,headache, bizarre dreams and sleep disturbances,diuretic

> effects of

> > Ldn,...)?

> >

> > Does anyone have a list of initial side effects that we could

> read?. I will

> > try to make one in a near future myself and make it available.

> >

> > thank you

> >

>

[Guest guest]

.. Just to be clear .. unless muscle spasms are an issue, Dr

Bihair would start the patient on 4.5mg LDN. This is the dose he has

started most people on and he only alters it if side effects occur

and persist. Remember, most people do not suffer serious side

effects beyond sleep disturbance for a week or so .. and many people

don't even suffer that. That makes it even more annoying for those

who do suffer side effects ... without question some people have

issues with LDN .. there are many questions we need to answer.

All the best

--- In low dose naltrexone , <sucre3@...>

wrote:

>

> Dear all

>

> We are a Spanish family that are just about to try LDN for a young

male with

> ataxia symptoms (equilibrium, stability and lower limb

coordination severely

> affected). He has movility but requires external aid (one cross),

and can

> walk only for a while. We have joined the discussion group and

have realized

> that there are quite a lot of first time side effects both

associated to

> filler-sensitivities and dose levels. Because we cannot count on

> expert supervision on the use of LDN in Spain , I wished I could

ask two

> things:

>

> 1) is a 3.0 mg dose seem to be working better for males and 4.5 mg

for

> females? (I read this somewhere) (should we start with 3.mg and

then decide

> whether to move to 4.5mg or stay there?),

>

> 2) could I hear from people who are taking ldn and had had no

initial side

> effects? (is everyone experimenting some kind of effect?

(spasticity,

> tremors,headache, bizarre dreams and sleep disturbances,diuretic

effects of

> Ldn,...)?

>

> Does anyone have a list of initial side effects that we could

read?. I will

> try to make one in a near future myself and make it available.

>

> thank you

>

[Guest guest]

Thank you and all others for your information is very useful for

us.

It helps to know that initial side effects are not necessarily a

common thing. Somehow it's easy to get a biased perspective from

reading the discussion groups, as we don;t hear all voices. And this

is by no means a criticism to the discussion group, that we are so

much indebted with.

Many thanks.

pd:To the lady that lived in Valencia: we are from Barcelona.

> >

> > Dear all

> >

> > We are a Spanish family that are just about to try LDN for a

young

> male with

> > ataxia symptoms (equilibrium, stability and lower limb

> coordination severely

> > affected). He has movility but requires external aid (one cross),

> and can

> > walk only for a while. We have joined the discussion group and

> have realized

> > that there are quite a lot of first time side effects both

> associated to

> > filler-sensitivities and dose levels. Because we cannot count on

> > expert supervision on the use of LDN in Spain , I wished I could

> ask two

> > things:

> >

> > 1) is a 3.0 mg dose seem to be working better for males and 4.5

mg

> for

> > females? (I read this somewhere) (should we start with 3.mg and

> then decide

> > whether to move to 4.5mg or stay there?),

> >

> > 2) could I hear from people who are taking ldn and had had no

> initial side

> > effects? (is everyone experimenting some kind of effect?

> (spasticity,

> > tremors,headache, bizarre dreams and sleep disturbances,diuretic

> effects of

> > Ldn,...)?

> >

> > Does anyone have a list of initial side effects that we could

> read?. I will

> > try to make one in a near future myself and make it available.

> >

> > thank you

> >

>

[Guest guest]

, Go to WWW.REMEDYFIND.COM Click on Multiple Sclerosis in the left hand collumn. You will find hundreds of comments on all treatments including LDN, positive and negative. It is very informative. Smiles, Ed sucre3 <sucre3@...> wrote: Thank you and all others for your information is very useful for us. It helps to know that initial side effects are not necessarily a common thing. Somehow it's easy to get a biased perspective from reading the discussion groups, as we don;t hear all voices. And this is by no means a criticism to the

discussion group, that we are so much indebted with.Many thanks. pd:To the lady that lived in Valencia: we are from Barcelona. > >> > Dear all> > > > We are a Spanish family that are just about to try LDN for a young > male with> > ataxia symptoms (equilibrium, stability and lower limb > coordination severely> > affected). He has movility but requires external aid (one cross), > and can> > walk only for a while. We have joined the discussion group and > have realized> > that there are quite a lot of first time side effects both > associated to> > filler-sensitivities and dose levels. Because we cannot count on> > expert supervision on the use of LDN in Spain , I wished I could > ask two> > things:> > > > 1) is a 3.0 mg dose seem to be working better for males and 4.5 mg > for> > females? (I read this somewhere) (should we start with 3.mg and > then decide> > whether

to move to 4.5mg or stay there?),> > > > 2) could I hear from people who are taking ldn and had had no > initial side> > effects? (is everyone experimenting some kind of effect? > (spasticity,> > tremors,headache, bizarre dreams and sleep disturbances,diuretic > effects of> > Ldn,...)?> > > > Does anyone have a list of initial side effects that we could > read?. I will> > try to make one in a near future myself and make it available.> > > > thank you> >>

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[Guest guest]

Hi ,

I just wanted to say that I really enjoyed your book! It really

helped me with my decision to start the ldn and continue. I also

have passed on your story in regards to your family member and his

success with ldn and parkinsons.

I was wondering if I could ask you a question? I will understand if

you are too busy. Have heard of many with either parkinsons or als

taking the ldn? I know there is mention of both at the main ldn

site but I wondered if there was any info. thats more current?

Take Care and thanks again for passing on your ldn story.

>

> Answer to Q1 .. straight from the LDN site

> People who have multiple sclerosis that has led to muscle spasms

are

> advised to begin LDN treatment with just 3mg daily and to maintain

> that dosage.

> Patients who are exposed to undue fatigue, heat, or a febrile

> illness may demonstrate a recurrence of prior symptoms, stemming

> from an area of old neurologic involvement. These areas tend to

have

> increased irritability of nervous tissue surrounding old healed MS

> scars ( " plaques " ). Such an episode may be very transient and may

not

> represent a true relapse.

>

[Guest guest]

Hi .. I am pleased you enjoyed the book. I love hearing that.

I have no contact with anybody with als on ldn .. with PD I know of

6 people but my uncle is on it the longest of the six and it is with

him I have the most contact. PD progresses slower than MS but my

uncle is on it 3.5 years now and is taking nothing else .. not even

a multi vitamin and his diet is very Irish .. and that is not good.

I have to conclude LDN is working for him for now but there are days

he swears it is not. I will see him in March and report. The other 5

people are not sure if LDN is working for their PD also. They really

do not know. I have to say I think it is working for my uncle

because he is still working 12 hour days and his wife tells me that

he has not progressed. But his wife is the world's happiest person

and always tells him he is fine even when he has the flu. And he

believes her, but then starts to doubt again. His initial symptoms

are still there .. his shake in his arm might even be slightly worse

overall .. but he has not reached a point lower than his first day

on LDN .. that seems to be the general overall picture. The jury is

still out on LDN and PD but it seems to be leaning towards it

working. If I was told I had PD I would take LDN until I knew for

sure it was not working. Having said that .. if I get PD then that

will prove it does not stop PD because I am already on the stuff.

Dr Bihari assures me LDN will work for PD so I am holding on to that

hope for now. My uncle scares the life out of me on the phone so I

cannot wait to pick him, Annie, Mom and Dad up at JFK next month and

analyze their current conditions without being too obvious about it.

All the Best

>

> Hi ,

>

> I just wanted to say that I really enjoyed your book! It really

> helped me with my decision to start the ldn and continue. I also

> have passed on your story in regards to your family member and his

> success with ldn and parkinsons.

> I was wondering if I could ask you a question? I will understand

if

> you are too busy. Have heard of many with either parkinsons or als

> taking the ldn? I know there is mention of both at the main ldn

> site but I wondered if there was any info. thats more current?

>

> Take Care and thanks again for passing on your ldn story.

>

> >

> > Answer to Q1 .. straight from the LDN site

> > People who have multiple sclerosis that has led to muscle spasms

> are

> > advised to begin LDN treatment with just 3mg daily and to

maintain

> > that dosage.

> > Patients who are exposed to undue fatigue, heat, or a febrile

> > illness may demonstrate a recurrence of prior symptoms, stemming

> > from an area of old neurologic involvement. These areas tend to

> have

> > increased irritability of nervous tissue surrounding old healed

MS

> > scars ( " plaques " ). Such an episode may be very transient and may

> not

> > represent a true relapse.

> >

>

[Guest guest]

Hi ,

Thank you so much for taking the time to answer me. I really

appreciate it!

I am thinking your uncle and other PD patients are not unlike how I

feel sometimes with my ms and ldn. I think it's normal to forget

LDN's benefits. A person can grow accustomed to changes be it good

or bad and forget both. I think it helps us cope. I do wish we

would remember the good tho. *grin*. I am thinking if I go off the

ldn I will see that it really did benefit me in more ways than one.

Course I'm not going to try that anytime soon.

I have another disease which I believe is autoimmune. It's called

hidradenitis supurativa. It's a disease of the aprocrine sweat

bearing glands that results in very painful cysts. This is where I

can be a guinea pig. I can tell pretty quickly if something is

going to work with it. After being on the ldn for almost 3 months,

my last flare had an eighty% reduction in pain. That in itself is

amazing. I am going to pass this knowledge on to the hs community.

I have already in a small way. I emailed a pharmaceutical company

who is looking into treatments for hs. I realize the pharmaceutical

co's are not as interested in something old /new but it was worth a

try. I will write other hs sufferers. I also made up a booklet on

the current info on ldn for my neuro to read. Hopefully we can get

the word out. I give the members here so much credit for helping

and passing on their knowledge.

Take Care

ps, Let me know how your uncle is doing when you see him?

>

> Hi .. I am pleased you enjoyed the book. I love hearing

that.

> I have no contact with anybody with als on ldn .. with PD I know

of

> 6 people but my uncle is on it the longest of the six and it is

with

> him I have the most contact. PD progresses slower than MS but my

> uncle is on it 3.5 years now and is taking nothing else .. not

even

> a multi vitamin and his diet is very Irish .. and that is not

good.

> I have to conclude LDN is working for him for now but there are

days

> he swears it is not. I will see him in March and report. The other

5

> people are not sure if LDN is working for their PD also. They

really

> do not know. I have to say I think it is working for my uncle

> because he is still working 12 hour days and his wife tells me

that

> he has not progressed. But his wife is the world's happiest person

> and always tells him he is fine even when he has the flu. And he

> believes her, but then starts to doubt again. His initial symptoms

> are still there .. his shake in his arm might even be slightly

worse

> overall .. but he has not reached a point lower than his first day

> on LDN .. that seems to be the general overall picture. The jury

is

> still out on LDN and PD but it seems to be leaning towards it

> working. If I was told I had PD I would take LDN until I knew for

> sure it was not working. Having said that .. if I get PD then that

> will prove it does not stop PD because I am already on the stuff.

> Dr Bihari assures me LDN will work for PD so I am holding on to

that

> hope for now. My uncle scares the life out of me on the phone so I

> cannot wait to pick him, Annie, Mom and Dad up at JFK next month

and

> analyze their current conditions without being too obvious about

it.

>