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-I have done low dose naltrexone for about 4 months.

I didn't see much difference. One of the things that has gone on

with me is a herpes outbreak on my tailbone and it would be there

almost all the time, I was not sure if that is what would make me

have that awful flu like achiness but, on the naltrexone I still

broke out. I don't think the flue feeling was quite as strong and at

the time I was not having as much pain as I do now.

I guess you know that any type of pain med that has a nartic can't

spell will not work with the naltrexone.

I only take Ultram so I don't take stonger pain meds, but I have had

to with a pinched nerve.

I have also taken shots of glutathione atp, I did feel better from

the flu like achiness while I took those. But after about 2months

something strange happened to my face and I didn't know what caused

this strange thing to happen so I stopped them.

I had a blood test from spectracell for glutathione and mine was

normal but I still think I felt an improvment on them.

I started getting so sleepy last spring and nothing was helping me to

stay awake and I ran across something about atp and sleelp.

I could not understand the article but it made it sound like it would

make you sleep and I thought it gave you energy.

I do think the shots were a plus I just had some things that popped

up and when I don't know what cause it then I have to retrace

everything and place my own Dr detective. My Drs tried also.

But that is when I ask one my shrink if someone could have a small

case of encephlitis and not be in intensive care and he said yes lyme.

That put me on this path and now I found out.

Sandy

-- In , " jill1313 " <jenbooks13@h...> wrote:

>

> AS long as we're on alternative med topics (ambrotose, hyperbaric),

> anyone consider low dose naltrexons therapy for lyme? Or the BLasi

> protocol which is mineral balancing? just curious.

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Sandy

I tried the LDN a couple of yrs back, It didn't seem to do much except to make

me alot more stiff (one of my main problems) It did seem to help with energy.

I know other lymies who take it to balance the immune system.

You can't take any pain meds that have codeine, I can't remember about the

ultram, seems like that was not OK to take either.

There is a LDN group on . They are helpful with questions, mainly MS

people and they don't like to hear about the lyme/ms connection. Seems like

some people really like their " box "

sandy <irishdrought2003@...> wrote:

-I have done low dose naltrexone for about 4 months.

I didn't see much difference. One of the things that has gone on

with me is a herpes outbreak on my tailbone and it would be there

almost all the time, I was not sure if that is what would make me

have that awful flu like achiness but, on the naltrexone I still

broke out. I don't think the flue feeling was quite as strong and at

the time I was not having as much pain as I do now.

I guess you know that any type of pain med that has a nartic can't

spell will not work with the naltrexone.

I only take Ultram so I don't take stonger pain meds, but I have had

to with a pinched nerve.

I have also taken shots of glutathione atp, I did feel better from

the flu like achiness while I took those. But after about 2months

something strange happened to my face and I didn't know what caused

this strange thing to happen so I stopped them.

I had a blood test from spectracell for glutathione and mine was

normal but I still think I felt an improvment on them.

I started getting so sleepy last spring and nothing was helping me to

stay awake and I ran across something about atp and sleelp.

I could not understand the article but it made it sound like it would

make you sleep and I thought it gave you energy.

I do think the shots were a plus I just had some things that popped

up and when I don't know what cause it then I have to retrace

everything and place my own Dr detective. My Drs tried also.

But that is when I ask one my shrink if someone could have a small

case of encephlitis and not be in intensive care and he said yes lyme.

That put me on this path and now I found out.

Sandy

-- In , " jill1313 " wrote:

>

> AS long as we're on alternative med topics (ambrotose, hyperbaric),

> anyone consider low dose naltrexons therapy for lyme? Or the BLasi

> protocol which is mineral balancing? just curious.

Questions and/or comments can be directed to the list owner at

-Owner

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  • 6 months later...

Forwarded from another list. . .does anyone know Dr. G's opinion of LDN?

Thanks!

Heidi

[Autism-Biomed-BayArea] Re: LDN

Hi Luana,

LDN stands for low dose naltrexone, and it is an immune modulator.

Jaqueline McCandles did an informal study on some of her patients to

see if it would help the immune system... what she found was that a

number of kids had positive responses " in the area of mood,

cognition, language, and relating. " She has a whole group

devoted to LDN and within the group is a database tracking people's

positive/negative responses. We have been using the transdermal

cream since late July, my son had a little bit restless sleep the

first couple of weeks we were ramping up, but I still thought the

positives were worth it to continue. Anyway, here is the

group address and the report from Dr. McCandles' study.

Autism_LDN/

LOW-DOSE NALTREXONE: INFORMAL CLINICAL STUDY REPORT, 7-1-05

What is naltrexone? Naltrexone is an FDA-approved drug called Revia

used as an opiate antagonist, and has been used to treat opiate drug

addiction. At full dose, usually 50-150mg a day, it blocks the

response to opiate drugs such as heroin or morphine. I as well as

many other DAN! doctors have tried Naltrexone as an opioid blocker

hoping to offset the opioid effects of the large peptides in wheat

and milk that are thought to affect our kids adversely. However, I

never found it to be useful for that purpose, and I haven't heard of

many others who have. Some studies were actually done on autistic

children by researchers to try to study this, but results were not

encouraging. I occasionally hear of it being used for SIB, but I do

not know its effectiveness in that regard.

However, it has been shown that opioids can operate as cytokines,

operating through opioid receptors on immune cells and producing

immunomodulatory effects. The quality of an individual's immune

system can be evaluated through the balance of cytokines (e.g.

interleukins and interferons) it is producing. Cytokines are the

principal communication signalers of the immune system. A popular

classification method is referred to as the Th1/Th2 balance; Th1

cells promote cell-mediated immunity while Th2 cells induce humoral

immunity. While cellular immunity (Th1) directs Natural Killer T-

cells and macrophages to attack abnormal cells and microorganisms at

sites of infection inside the cells, humoral immunity (Th2) results

in the production of antibodies used to neutralize foreign invaders

and substances outside of the cells. The inability to respond

adequately with a Th1 response can result in chronic infection and

cancer; an overactive Th2 response can contribute to allergies,

various syndromes and play a role in autoimmune disease, which

probably all of our ASD children have to some extent.

A Manhattan, New York physician, Dr. Bernard Bihari, studying the

immune responses in a group of AIDs patients, discovered that a very

low dose of naltrexone in less than one-tenth the usual dosage

boosts the immune system and helps fight any disease that is

characterized by inadequate immune function. As an effective up-

regulator of the immune system, he termed this new therapy Low-Dose

Naltrexone (LDN) and has described remarkable responses in those

with AIDs, cancer, and autoimmune diseases such as Multiple

Sclerosis (MS). LDN tends to normalize the immune system by

elevating the body's endorphin levels but also accomplishes its

results with virtually no side effects or toxicity. I first got the

idea of trying this on ASD children from hearing of its benefits in

halting the usual progression in MS disease, reading of many first-

hand reports of no recurrence for up to 5 and 6 years in some of

these people using a nightly tiny dose of Naltrexone. In reviewing

the literature, the lowest dose Naltrexone that had been used in

autistic children was 12.5mg, and the researchers were looking for

its use as an opioid antagonist, not an immune system stimulant.

Since the endorphins are an integral part of the immune system, when

a tiny dose of naltrexone (3mg for children, 4.5mg for adults) is

given between 9-12pm at night (11pm is ideal) there is an attempt

for the body to overcome the opioid block and the endorphins rise,

to stay elevated throughout the next 18 hours.

I have just completed an 8-week informal clinical study on 15 of my

ASD patients using low-dose naltrexone, or LDN. Several adults

participated also, one with Crohn's Disease, one with Chronic

Fatigue Syndrome, and Jack and myself as controls, not having any

immune disorder that we know about. The dose Dr. Bihari found most

efficacious was between 3-4.5mg, so the children were given 3mg and

the adults or children over 100 lbs 4.5mg. This medication is

terribly bitter (causing subjects from previous studies to drop

out), and needs to be given once daily only between 9-12pm (ideally

11pm, which is usually about the time parents go to bed). I worked

with Dr. Tyrus at Coastal Compounding; he at first created

capsules in these two strengths, but then we decided on a

transdermal cream which parents could put onto their kids just

before parents go to bed – hopefully the kids are long asleep. That

way we could adjust the dose easily (some of the tinier kids did

better with only 1-1/2mg), the bitter taste was no problem, and it

could be put on their bodies while they slept. It has worked

wonderfully and was brilliantly executed by Tyrus, with whom I have

worked closely on many compounds for ASD kids over the years. A

month's supply is $30, a two-month supply is $55.

I asked parents to report weekly on: Sleep, Appetite, Stools,

Relating, General Activity, Cognition, and Language. 8 of the 15

children have had positive responses, and five of these 8 have been

nothing short of phenomenal according to their parents. The primary

positive responses have been in the area of mood, cognition,

language, and relating. 5 of the children had equivocal results,

some good responses interspersed with complications with gut

infections and treatments, so it was difficult to know just what was

doing what. One child dropped out because of no response after 4

weeks (my Chelsey, of course, a notorious non-responder), one child

dropped out because of vacations and trips, and another stopped

because of personal family issues.

No allergic reactions were noted to the cream. The primary side

effect was that in the first few days of taking this medicine, the

child might have some insomnia and wake up earlier. Even then, most

woke up in better mood. Quite a few of the kids had early

hyperactive/hyperawake effects, and this was temporary (3-5 days)

except for two of the tiny kids, who finally got much better when

their dose was decreased. One of these ended up doing very well

with only a tiny bit (almost immeasurable) each night, yet it had a

definite effect. I would say the most consistent positive report

has been happiness and good mood in the kids. I now recommend

everyone start with ¼ cc, or 1.5mg for a few nights before going on

to the ½ cc, which is 3mg. The adults will stay on 4.5mg, though 3

may be plenty for some of them.

The two adults in the study, one with Crohn's and the other with

Chronic Fatigue Syndrome, have had very positive responses, and the

Crohn's participant says she has not had any problems with her gut

since taking this. Dr. Bihari has announced a study with 15 Crohn's

with all 15 having a very positive and sustained excellent reaction

to the therapy. Other than feeling a little more erotic (this has

been reported in some of the MS patients), Jack and I have not

noticed any side effects from the use at 4.5mg nightly. We feel

pretty good on it; the mood elevation is pretty universal with

everyone who takes it, and increased socialization had even been

noted in some earlier studies which used much bigger doses. No one

else has done a study of ASD kids with these tiny doses, and no one

to my knowledge has used the transdermal application at night for

the endorphin rush (pulse) that takes place about 2-4 am. All

participants who completed the study have indicated they wish to

continue.

This very small and very preliminary study has been positive enough

to warrant a more formal study, and I am trying to get Dr. Vojdani

at Immunosciences interested in participating with some immune

testing to verify the supposed T2 to T1 shift that I believe is

happening for at least some of the children. However, the doses are

tiny, the application is easy, it is non-toxic at these doses, and

it is relatively inexpensive, so I suspect we will get lots of

informal clinical data from those who will be starting to use it now

long before we get a formal study conducted. This is by no means a

magic bullet, but I am adding it to my armamentarium to try to get

the children as immune-efficient as possible. I would appreciate

parents reporting on the lists I monitor; for questions, please do

not post or phone me personally, but I will try to address questions

on the CSB e-list if other parents or your doctors cannot. There is

a website www.low dose naltrexone.com that will provide more

information to those desiring such.

To those of you who participated in the study; please feel free to

share on the lists any of your feelings, impressions, and results,

good, bad, or indifferent – the more we know the better for

everyone. I THANK ALL OF YOU SO MUCH for being trusting enough to

go along with me in trying something new, and I thank Dr. Tyrus

for helping devise a successful form to use in our children.

BTW, he has as usual offered to share his formula with any other

compounding pharmacy who wishes to call him, 912-354-5188. Those of

you in my study may want to transfer your prescription to your local

compounder to save shipping charges.

Jaquelyn McCandless, M.D.

7-2-05

> Hi ,

>

> what is LDN that you mentioned that helped you son with attention

and mood?

> Thank you

> Luana

>

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Hey Heidi~~

How are you? What's LDN?

Rose

Re: LDN

Forwarded from another list. . .does anyone know Dr. G's opinion of LDN?

Thanks!

Heidi

[Autism-Biomed-BayArea] Re: LDN

Hi Luana,

LDN stands for low dose naltrexone, and it is an immune modulator.

Jaqueline McCandles did an informal study on some of her patients to

see if it would help the immune system... what she found was that a

number of kids had positive responses " in the area of mood,

cognition, language, and relating. " She has a whole group

devoted to LDN and within the group is a database tracking people's

positive/negative responses. We have been using the transdermal

cream since late July, my son had a little bit restless sleep the

first couple of weeks we were ramping up, but I still thought the

positives were worth it to continue. Anyway, here is the

group address and the report from Dr. McCandles' study.

Autism_LDN/

LOW-DOSE NALTREXONE: INFORMAL CLINICAL STUDY REPORT, 7-1-05

What is naltrexone? Naltrexone is an FDA-approved drug called Revia

used as an opiate antagonist, and has been used to treat opiate drug

addiction. At full dose, usually 50-150mg a day, it blocks the

response to opiate drugs such as heroin or morphine. I as well as

many other DAN! doctors have tried Naltrexone as an opioid blocker

hoping to offset the opioid effects of the large peptides in wheat

and milk that are thought to affect our kids adversely. However, I

never found it to be useful for that purpose, and I haven't heard of

many others who have. Some studies were actually done on autistic

children by researchers to try to study this, but results were not

encouraging. I occasionally hear of it being used for SIB, but I do

not know its effectiveness in that regard.

However, it has been shown that opioids can operate as cytokines,

operating through opioid receptors on immune cells and producing

immunomodulatory effects. The quality of an individual's immune

system can be evaluated through the balance of cytokines (e.g.

interleukins and interferons) it is producing. Cytokines are the

principal communication signalers of the immune system. A popular

classification method is referred to as the Th1/Th2 balance; Th1

cells promote cell-mediated immunity while Th2 cells induce humoral

immunity. While cellular immunity (Th1) directs Natural Killer T-

cells and macrophages to attack abnormal cells and microorganisms at

sites of infection inside the cells, humoral immunity (Th2) results

in the production of antibodies used to neutralize foreign invaders

and substances outside of the cells. The inability to respond

adequately with a Th1 response can result in chronic infection and

cancer; an overactive Th2 response can contribute to allergies,

various syndromes and play a role in autoimmune disease, which

probably all of our ASD children have to some extent.

A Manhattan, New York physician, Dr. Bernard Bihari, studying the

immune responses in a group of AIDs patients, discovered that a very

low dose of naltrexone in less than one-tenth the usual dosage

boosts the immune system and helps fight any disease that is

characterized by inadequate immune function. As an effective up-

regulator of the immune system, he termed this new therapy Low-Dose

Naltrexone (LDN) and has described remarkable responses in those

with AIDs, cancer, and autoimmune diseases such as Multiple

Sclerosis (MS). LDN tends to normalize the immune system by

elevating the body's endorphin levels but also accomplishes its

results with virtually no side effects or toxicity. I first got the

idea of trying this on ASD children from hearing of its benefits in

halting the usual progression in MS disease, reading of many first-

hand reports of no recurrence for up to 5 and 6 years in some of

these people using a nightly tiny dose of Naltrexone. In reviewing

the literature, the lowest dose Naltrexone that had been used in

autistic children was 12.5mg, and the researchers were looking for

its use as an opioid antagonist, not an immune system stimulant.

Since the endorphins are an integral part of the immune system, when

a tiny dose of naltrexone (3mg for children, 4.5mg for adults) is

given between 9-12pm at night (11pm is ideal) there is an attempt

for the body to overcome the opioid block and the endorphins rise,

to stay elevated throughout the next 18 hours.

I have just completed an 8-week informal clinical study on 15 of my

ASD patients using low-dose naltrexone, or LDN. Several adults

participated also, one with Crohn's Disease, one with Chronic

Fatigue Syndrome, and Jack and myself as controls, not having any

immune disorder that we know about. The dose Dr. Bihari found most

efficacious was between 3-4.5mg, so the children were given 3mg and

the adults or children over 100 lbs 4.5mg. This medication is

terribly bitter (causing subjects from previous studies to drop

out), and needs to be given once daily only between 9-12pm (ideally

11pm, which is usually about the time parents go to bed). I worked

with Dr. Tyrus at Coastal Compounding; he at first created

capsules in these two strengths, but then we decided on a

transdermal cream which parents could put onto their kids just

before parents go to bed ? hopefully the kids are long asleep. That

way we could adjust the dose easily (some of the tinier kids did

better with only 1-1/2mg), the bitter taste was no problem, and it

could be put on their bodies while they slept. It has worked

wonderfully and was brilliantly executed by Tyrus, with whom I have

worked closely on many compounds for ASD kids over the years. A

month's supply is $30, a two-month supply is $55.

I asked parents to report weekly on: Sleep, Appetite, Stools,

Relating, General Activity, Cognition, and Language. 8 of the 15

children have had positive responses, and five of these 8 have been

nothing short of phenomenal according to their parents. The primary

positive responses have been in the area of mood, cognition,

language, and relating. 5 of the children had equivocal results,

some good responses interspersed with complications with gut

infections and treatments, so it was difficult to know just what was

doing what. One child dropped out because of no response after 4

weeks (my Chelsey, of course, a notorious non-responder), one child

dropped out because of vacations and trips, and another stopped

because of personal family issues.

No allergic reactions were noted to the cream. The primary side

effect was that in the first few days of taking this medicine, the

child might have some insomnia and wake up earlier. Even then, most

woke up in better mood. Quite a few of the kids had early

hyperactive/hyperawake effects, and this was temporary (3-5 days)

except for two of the tiny kids, who finally got much better when

their dose was decreased. One of these ended up doing very well

with only a tiny bit (almost immeasurable) each night, yet it had a

definite effect. I would say the most consistent positive report

has been happiness and good mood in the kids. I now recommend

everyone start with ¼ cc, or 1.5mg for a few nights before going on

to the ½ cc, which is 3mg. The adults will stay on 4.5mg, though 3

may be plenty for some of them.

The two adults in the study, one with Crohn's and the other with

Chronic Fatigue Syndrome, have had very positive responses, and the

Crohn's participant says she has not had any problems with her gut

since taking this. Dr. Bihari has announced a study with 15 Crohn's

with all 15 having a very positive and sustained excellent reaction

to the therapy. Other than feeling a little more erotic (this has

been reported in some of the MS patients), Jack and I have not

noticed any side effects from the use at 4.5mg nightly. We feel

pretty good on it; the mood elevation is pretty universal with

everyone who takes it, and increased socialization had even been

noted in some earlier studies which used much bigger doses. No one

else has done a study of ASD kids with these tiny doses, and no one

to my knowledge has used the transdermal application at night for

the endorphin rush (pulse) that takes place about 2-4 am. All

participants who completed the study have indicated they wish to

continue.

This very small and very preliminary study has been positive enough

to warrant a more formal study, and I am trying to get Dr. Vojdani

at Immunosciences interested in participating with some immune

testing to verify the supposed T2 to T1 shift that I believe is

happening for at least some of the children. However, the doses are

tiny, the application is easy, it is non-toxic at these doses, and

it is relatively inexpensive, so I suspect we will get lots of

informal clinical data from those who will be starting to use it now

long before we get a formal study conducted. This is by no means a

magic bullet, but I am adding it to my armamentarium to try to get

the children as immune-efficient as possible. I would appreciate

parents reporting on the lists I monitor; for questions, please do

not post or phone me personally, but I will try to address questions

on the CSB e-list if other parents or your doctors cannot. There is

a website www.low dose naltrexone.com that will provide more

information to those desiring such.

To those of you who participated in the study; please feel free to

share on the lists any of your feelings, impressions, and results,

good, bad, or indifferent ? the more we know the better for

everyone. I THANK ALL OF YOU SO MUCH for being trusting enough to

go along with me in trying something new, and I thank Dr. Tyrus

for helping devise a successful form to use in our children.

BTW, he has as usual offered to share his formula with any other

compounding pharmacy who wishes to call him, 912-354-5188. Those of

you in my study may want to transfer your prescription to your local

compounder to save shipping charges.

Jaquelyn McCandless, M.D.

7-2-05

> Hi ,

>

> what is LDN that you mentioned that helped you son with attention

and mood?

> Thank you

> Luana

>

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Per Dr. Goldberg,

This is a " recycled " idea, 10 years old and not safe or appropriate

for kids.

Thank you,

Adriennd Schwartz

Dr. Goldberg's office

> > Hi ,

> >

> > what is LDN that you mentioned that helped you son with

attention

> and mood?

> > Thank you

> > Luana

> >

>

>

>

>

>

>

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  • 1 month later...

Hi Tracey,

We started ldn a wk. ago. We have not gotten night wakings, but a

few days of waking earlier than usual (the last 2 nights). Day 2 and

3 he slept 13-15 hrs! I do think it makes them tired the first

couple of days. We are at 1/2 dose. We have seen just a tad more

verbal, but other than that, nothing yet. I think I am going to stay

at 1/2 dose one more week. You might want to bring your dose down a

bit.

>

> Hello

> >

> > We just started TD LDN last night with our 5 yo son.

> > He woke up a couple of times, even though we applied it

> > at 10:30 (application is between 10-11 pm).

> >

> > He was not following directions well this morning, and

> > our note home from school indicated the same thing there.

> > He also told them he was " tired " , which could be expected

> > if he didnt sleep well.

> >

> > Have any of you had these experiences with LDN? I would

> > appreciate any/all feedback you have regarding what is

> > typical, what to expect and other side effects. Thank you

> > in acvance for your helpfulness.

> >

> > Tracey

> >

>

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HI,

There is another list that talks mainly about LDN and you maybe able to get

some more inputs there:

Autism_LDN/

Thanks.

Zhaoping

On 10/27/05, Tracey <jimtaylor@...> wrote:

>

> Hello

> >

> > We just started TD LDN last night with our 5 yo son.

> > He woke up a couple of times, even though we applied it

> > at 10:30 (application is between 10-11 pm).

> >

> > He was not following directions well this morning, and

> > our note home from school indicated the same thing there.

> > He also told them he was " tired " , which could be expected

> > if he didnt sleep well.

> >

> > Have any of you had these experiences with LDN? I would

> > appreciate any/all feedback you have regarding what is

> > typical, what to expect and other side effects. Thank you

> > in acvance for your helpfulness.

> >

> > Tracey

> >

>

>

>

>

>

>

>

> =======================================================

>

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  • 2 months later...

Yes I agree with you in that just because someone is labeled " global "

delayed doesn't mean that mental retardation is the cause. Your website

is excellent, and I have no doubt your children are doing great. I just

posted about LDN, thinking maybe it would help someone. I understand

your frusturations, just don't think that my posting about LDN is

assuming everything is a viral issue. It was not intended to be that

way. Just trying to help! Thanks for posting information to help.

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  • 1 month later...
Guest guest

Hi Bruce:

You wrote:

>>Many cancers have opiate receptors involved.>>

Really? I did read that opiates like morphine, etc. feed cancer. Is

this the reason why LDN works?

>>Anything such as RCC (what I have), most types of lung cancer,

prostate cancer, breast cancer, colon cancer, liver cancer, gallbladder

cancer, pancreatic cancer, etc. can all be helped by LDN. It works

basically the same way by stimulating the immune system in it circadian

cycle which in turn attacks the cancer.>>

Bruce, what is RCC? I've got a nasty type of breast cancer and need to do more

than just the standard allopathic stuff.

>> I get a scrip from the doctor for the standard 50 mg tabs and then simply

dissolve in distilled water and keep in the refrigerator. My wife takes it

to help with arthritis as well as a preventative for cancer. The

compounding pharmacy way is to me a rather expensive thing to do and not

necessary unless you don't want to deal with a 5 ml syringe of stuff

nightly. To me it is easy and the $7 copay on our insurance is certainly

cheap enough. With both of us using it, one scrip lasts nearly 6 months.>>

I checked Costco's on-line pharmacy and they don't list naltrexone. What

kind of pharmacy do you get yours at? Do you crush one of the tablets in

50mg of water and then use 5ml of that a day? How long can you keep it in

the icebox once it's mixed?

>>Like anything else, do not expect it to overcome bad dietary practices or

other poor lifestyle issues that you can correct yourself. It is a help,

not a cure-all. Would not be without it.>>

No, unfortunatley there is no " magic bullet " but every little bit helps.

~Amber

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  • 4 weeks later...
Guest guest

Jim,

It is definitely NOT the end of the line. It's just a bad day. Stay the course. I've been on LDN for almost 3 yrs.

--Regards, Tom

-------------- Original message -------------- From: "Jharbott" <jharbott@...>

Anyone;

I've been on LDN since 8/25/05 and getting better, today I'm having a bad day, like I used to have when coming down with MS, bad pain, numbness & tingling, is this on the way to recovery or getting close to the end of the line? I have been told I would have some bad times, but, I've been on LDN 7 months, I need some advice on what to do, I ordered Serrapeptase yesterday, will that help when I start taking it, or I might be better by then.

Jim in ND

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Guest guest

Tom;

Thanx, I'm starting to come out of it, this is the first time since I've been on LDN that I felt this bad. I just want to walk again, my therapist says I'm getting there, but how long will it take? I suppose it depends on how bad a person was before starting LDN. I was always a very active person, but , I went down hill fast when the MS hit me.

Tom, have you noticed a big change in 3 yrs?

Jim

Re: [low dose naltrexone] LDN

Jim,

It is definitely NOT the end of the line. It's just a bad day. Stay the course. I've been on LDN for almost 3 yrs.

--Regards, Tom

-------------- Original message -------------- From: "Jharbott" <jharbott@...>

Anyone;

I've been on LDN since 8/25/05 and getting better, today I'm having a bad day, like I used to have when coming down with MS, bad pain, numbness & tingling, is this on the way to recovery or getting close to the end of the line? I have been told I would have some bad times, but, I've been on LDN 7 months, I need some advice on what to do, I ordered Serrapeptase yesterday, will that help when I start taking it, or I might be better by then.

Jim in ND

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Hi Jim,

I have bad pain from MS. The LDN helps some. One thing I tell myself to get by is, Pain is my friend. It means my nerves are still working. The alternative would mean paralysis. Not acceptable. I have read, and my doctor agrees, pain means nerves are healing. So on the bad days I thank God for my pain. Weird, but it helps. Hard to accept having MS.

Blessings,

Pam

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Jim,

Tom;

Thanx, I'm starting to come out of it, this is the first time since I've been on LDN that I felt this bad. I just want to walk again, my therapist says I'm getting there, but how long will it take?

Hard to say, very important to stretch and exercise as best you can..........every day, even 2 or 3 times a day. The more movement the better.......even when you think that you can't.

Tom, have you noticed a big change in 3 yrs? There was a significant improvement with urinary urgency and frequency from the very first night. Also an improvement with sensation and feelings in my ankles and feet. No further improvements but those mentioned have remained constant and no further progression and it's been almost 3 years.

Regards,

Tom

Re: [low dose naltrexone] LDN

Jim,

It is definitely NOT the end of the line. It's just a bad day. Stay the course. I've been on LDN for almost 3 yrs.

--Regards, Tom

-------------- Original message -------------- From: "Jharbott" <jharbott@...>

Anyone;

I've been on LDN since 8/25/05 and getting better, today I'm having a bad day, like I used to have when coming down with MS, bad pain, numbness & tingling, is this on the way to recovery or getting close to the end of the line? I have been told I would have some bad times, but, I've been on LDN 7 months, I need some advice on what to do, I ordered Serrapeptase yesterday, will that help when I start taking it, or I might be better by then.

Jim in ND

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  • 3 weeks later...
  • 2 weeks later...
Guest guest

HIYA ALL!

I KNOW I WAS MIA FOR QUITE SOME TIME SO I'M TRYING TO

GET CAUGHT BACK UP....ANYWAY, QUICK UPDATE, I HAD MY

BABY, SIERRA MY DOG WITH THE BONE CANCER, PUT TO

SLEEP. IF YOU THINK GETTING LDN PRESCRIBED FOR A HUMAN

IS DIFFICULT, TRY GETTING ANYONE TO PRESCRIBE IT FOR A

DOG. I HAVE NO DOUBT THAT IT CONTROLLED HER CANCER AND

GAVE ME AN EXTRA YEAR AND A HALF WITH HER. MY THANKS

GO TO ALL WHO RESPONDED WITH IDEAS AND THOUGHTS ABOUT

HER BUT WITHOUT THE LDN TREATMENT, HER PAIN JUST GOT

UNBEARABLE SO JUST ONE MORE THING I HATE ABOUT THE

" PROFESSIONAL " LEACHES. SO MANY, MANY THANKS :)

BE WELL,

DONNA

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>

> HI. NOW IM CONFUSED I THOUGHT LDN WAS TO BE TAKEN AT

> NIGHT BEFORE GOING TO BED. CAROL.

>

=====

LDN should be taken between the hours of 9PM and 3AM, no earlier than 9PM and no

later that 3AM.

Go to the LDN website, this is clearly stated there. Also read the Further Q &

A page, many fail to do that and there are many questions answered there.

http://www.ldninfo.org

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Hi Carol,

Yes you are right LDN is to be taken at night before bed. Do you think we

might have been talking about DLP, which is to be taken in the morning on an

empty stomach? You erased the message you were responding to, so I don't

know what conversation you are referring to.

My best

Aletha

[low dose naltrexone] ldn

> HI. NOW IM CONFUSED I THOUGHT LDN WAS TO BE TAKEN AT

> NIGHT BEFORE GOING TO BED. CAROL.

>

>

>

>

>

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Hi Aletha

LDN is suppose to be taken on an empty stomach at night before bed, empty

meaning 2 hrs. after anything to eat. Kim

[low dose naltrexone] ldn

>

>

>> HI. NOW IM CONFUSED I THOUGHT LDN WAS TO BE TAKEN AT

>> NIGHT BEFORE GOING TO BED. CAROL.

>>

>>

>>

>>

>>

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Guest guest

Hi Kim, No the LDN doesn't have to be taken on an empty stomach but it does have to be taken between 9pm and 3am every night. The DLP their talking about has to be taken on an empty stomach in the morning. Hope this helps your confusion... Always A Friend, Crystal Kim Dunmore <kimdunmore@...> wrote: Hi AlethaLDN is suppose to be taken on an empty stomach at night before bed, empty meaning 2 hrs. after anything to eat. Kim [low dose naltrexone] ldn>>>> HI. NOW IM CONFUSED I THOUGHT LDN WAS TO BE TAKEN AT>> NIGHT BEFORE GOING TO

BED. CAROL.>>>>>>>>>>

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i think you guys were talking about the dlp because i got confused

for a second and then i figured it out

cyndi

On Apr 28, 2006, at 1:30 PM, Aletha Wittmann wrote:

> Hi Carol,

>

> Yes you are right LDN is to be taken at night before bed. Do you

> think we

> might have been talking about DLP, which is to be taken in the

> morning on an

> empty stomach? You erased the message you were responding to, so I

> don't

> know what conversation you are referring to.

>

> My best

> Aletha

> [low dose naltrexone] ldn

>

>

> > HI. NOW IM CONFUSED I THOUGHT LDN WAS TO BE TAKEN AT

> > NIGHT BEFORE GOING TO BED. CAROL.

> >

> >

> >

> >

> >

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Donna I am glad the LDN gave her more time with you. So so so sorry to hear that she's gone. She was so lucky to have a close relationship with someone so caring and loving as you , and you must have given her the best life possible.I am sure that wherever her spirit is now, she's grateful and happy for all the love you gave her.May there be more humans like you in this world!

Nola

Re: [low dose naltrexone] ldn

HIYA ALL!I KNOW I WAS MIA FOR QUITE SOME TIME SO I'M TRYING TOGET CAUGHT BACK UP....ANYWAY, QUICK UPDATE, I HAD MYBABY, SIERRA MY DOG WITH THE BONE CANCER, PUT TOSLEEP. IF YOU THINK GETTING LDN PRESCRIBED FOR A HUMANIS DIFFICULT, TRY GETTING ANYONE TO PRESCRIBE IT FOR ADOG. I HAVE NO DOUBT THAT IT CONTROLLED HER CANCER ANDGAVE ME AN EXTRA YEAR AND A HALF WITH HER. MY THANKSGO TO ALL WHO RESPONDED WITH IDEAS AND THOUGHTS ABOUTHER BUT WITHOUT THE LDN TREATMENT, HER PAIN JUST GOTUNBEARABLE SO JUST ONE MORE THING I HATE ABOUT THE"PROFESSIONAL" LEACHES. SO MANY, MANY THANKS :)BE WELL,DONNA

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Hi Kim,

You can take LDN on an empty or full stomach. My husband has been on it for

just under 1.5 years now and has great success both ways. I don't think

anything I have read or heard of has stated that you should have an empty

stomach.

Let me know if I am wrong here (it would not be the first time).

Thanks

Aletha

[low dose naltrexone] ldn

>>

>>

>>> HI. NOW IM CONFUSED I THOUGHT LDN WAS TO BE TAKEN AT

>>> NIGHT BEFORE GOING TO BED. CAROL.

>>>

>>>

>>>

>>>

>>>

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Guest guest

>

> Hi Aletha

> LDN is suppose to be taken on an empty stomach at night before bed,

empty

> meaning 2 hrs. after anything to eat. Kim

--

LDN does NOT have to be taken on an empty stomach.

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Hi Jim,

Did your prescription change at all (did you start on a new bottle?). How about your diet or supplements? Any new stress? If you eliminate these items then I would look at the Serrapeptase.

I have noticed when people get allergies or colds or other illnesses they sometimes get flare ups. I hope you continue to feel much better. Please keep us posted.

My best

Aletha

[low dose naltrexone] LDN

I need some answers, I started LDN Aug 25, 2005 and have been doing well I thought, my bladder control had gotten better, numbness and tingling all but disappeared, I have had some set backs occasionally, but, the last week I seemed to have lost my bladder control and severe numbness yesterday and last night, today I'm feeling somewhat better. I have been told a person on LDN sort of gets better by reversal of MS symptoms and eventually becomes much better, is there something to this? I have been using Serrapeptase for about three weeks, I don't know what that could be doing, when I feel better I seem to feel much better, almost normal, if I remember what that was again. Any advice will be appreciated.

THANX!

Jim H.

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