LDN

[Guest guest]

I have a relative recently diagnosed with ALS. I was not aware of the connection with Lyme! Would appreciate a copy of the Harvey-Martz article if you could forward it to my email address: pflournoysr@... . Thank you for your help.

Phil Flournoy

[low dose naltrexone] Re: LDN

Please - anyone diagnosed w/ALS, research/google "Lyme ALS" - read as much as you can. I have a published article by WT Harvey and D Martz on motor neuron disease and recovery w/antibiotic therapy scanned into my computer. Be glad to send it to you privately (can't send attachments to the list).

Sue

Posted by: "DL Dycus" bluemustangragtop bluemustangragtop

Mon Sep 1, 2008 2:20 pm (PDT)

I have ALS and have been on LDN for 4 months. LDN helped greatly with my fatigue. I will continue to take it because I have had no side effects, and I feel better on it. My ALS symptoms continue to increase slowly. The LDN costs me $40 a month. Don't give up the fight!!

[Guest guest]

>

> I have ALS and have been on LDN  for 4 months. LDN helped greatly

with my fatigue. I will continue to take it because I have had no

side effects, and I feel better on it.  My ALS symptoms continue to

increase slowly. The LDN costs me $40 a month.  Don't give up the

fight!! 

===========

I was wondering about you the other day. Consider juicing(organic),

avoiding gluten, dairy, refined sugar.

Also, do liver, colon, kidney and yeast detoxes one to two times a

year.

http://www.yourwaytowellness.com/shop/advnat.htm

http://www.advancednaturals.com

Liver cleansing and yeast detoxing is of much importance.

Try TOA free Samento liquid by Nutramedix www.nutramedix.com it's a

great immune system booster, anti-inflamatory, anti-bacterial. You

can also get it at www.myherbs.net they have it in capsules or

liquid, liquid is more potent.

[Guest guest]

obviously you thought wrong

when someone thinks something erroneous, shouldn't they research to find out why they're in such an error?

all the answers you need are on the main website, perhaps you should read them all first?

[low dose naltrexone] ldn

why are you taking ldn i thought it was a blocker 4 opiates

[Guest guest]

I must of missed something here...who are you talking to?? LOL Saundra RenzEarth, protect her for she is our life!!! [low dose naltrexone] ldn

why are you taking ldn i thought it was a blocker 4 opiates

[Guest guest]

Try reading the LDN website first then come back here with questions,

comments and concerns.

http://www.low dose naltrexone.org/

Art

My MS/LDN Story:

http://tinyurl.com/5tcp6r

--

>

> why are you taking ldn i thought it was a blocker 4 opiates

>

[Guest guest]

- Ingrid,

Are you a doctor, or in the medical field? How does one

determine that 4.5 ldn isn't working, so must go higher on the dose?

How long, in your opinion, does one take LDN before deciding that

their particular dose, isn't working, or should be taken in the

morning, instead? How do you determine that more is better or, less

is best?

-- In low dose naltrexone , Gunn Dybfest

<gunn.ingrid@...> wrote:

>

> There have been some discussions about taking ldn in the morning in

this forum. Some of the users have actually posted in here that they

do so, and they claim that ldn is working anyway. Elaine , the

author of the book that they soon start to sell at amazon, wrote in

an article where she has interviewed some of the researchers at Penn

State University that it seems that ldn works not even when taking it

in the morning, but also the researchers have found that the dose

could vary between 0.l to 10.0 mg each day, depending on the persons

metabolism and reactions to ldn. 

>  

> I don't want to mislead anyone by telling them to take ldn in the

mornings instead of the nights, and I use to say that it seems that

MS'ers are better by taking them at nights. (But this is the MS'ers

we know from this forum, maybe other takes the pills in the

mornings...and succeed as far as we know).... We have to be careful

when advising people, I have got mails from people being warned that

ldn does nothing if they take more than 4.5 mg or take it in the

morning. We have to admit that we can't support anyone by being

too sure, everyone is different, we react to treatment in different

ways, and it's better trying to take ldn in the morning instead of

giving it up when the sleep disturbances almost kills us. 

>  

> As I wrote in another post; advicing people to take ldn at night is

the first step. If time/melatonin/other meds/kali-phos(a homeopathic

remedy)wont help against sleep disturbances, - then try to change to

morning dosages. Size of dosage: the most used dose is 3.0 or 4.5.

The optimal has been and still is: 4.5 mg. But if ldn don't work at

4.5 mg for some, try a bigger dose. It's suggested to try up to 10.0

mg. Why give it up when it does nothing to you at the usual dosages?

What is the alternative? For me it would be: go back to medicines

that might give me cancer as a worse case scenario. I will rather

both try ldn in the mornings and if necessary - bigger doses when I

am flaring. I use 6.0 mg when flaring together with small doses of

prednisone. It helps me getting rid of flares that usually lasts from

3-6 months, only taking 1 month by such a protocol.

>  

> Kindest regards

> Ingrid

>

>

>

> Re: [low dose naltrexone] Info on sleep disturbances

please

> > >

> > > ,

> > >

> > > On some people get sleep disturbances and mostly it's just

vivid

> dreams.

> > > I had them for 2 or 3 nights when I started and wish they'd

come

> back as

> > > I enjoyed them!!

> > >

> > >

> > >

> > > Hudson wrote:

> > >>

> > >> I'm just concerned as I live by myself. Are the sleep

> disturbances

> > >> usually horrible in nature or just vivid dreams?

> > >> I'm not scared (LOL) I just don't want to wake up firing my

> pistol at

> > >> some imaginary monsters or something.

> > >> Are you generally exhausted the following day? And this should

> go on

> > >> for what two weeks? I'm just not real clear

> > >> On what to expect but I guess I'll find out because I know I

can

> trust

> > >> Skip's Pharmacy. Any comments would be

> > >> greatly appreciated.

> > >>

> > >>

> > >

> > >

> > > ------------------------------------

> > >

> > >

[Guest guest]

Re:

[low dose naltrexone] Info on

sleep disturbances please

> > >

> > > A friend just started

her daughter on 3.5mg LDN

for treating

> > Crohn's,

> > > the pharmacist didn't

prepare ramping up

capsules, the child

> can't

> > do

> > > the cream due to

reactions to the base

inredients and the capsules

> > > have some sort of

oily substance w them

making splitting by the

> mom

> > > impossible w/o

thowing 1/2 away.

> > >

> > > She didn't want to

waste the capsules so she

decided to just

> start

> > at

> > > full dose. The child

was wired at midnight last

night. I

> remember

> > > people saying this is

more likely when you don't

do a slow ramp

> up.

>

===============

What pharmacy is this mom

getting LDN from that it is

oily? Where was she

purchasing the LDN

transdermal cream?

If the insomnia doesn't

subside within the next few

days the child's diet may

be an interference? Is

this child gluten, sugar

and dairy free?

[Guest guest]

No, I am not a doctor or in the medical field. Taking smaller or bigger doses: You just have to feel if you feel better or not. Why does so many MS'ers use only 3 mg instead of 4.5 mg? They feel better on that dose.

If a new ldn user take 4.5 mg ldn in the evening and they gets unbearable side effects due to sleep disturbances, I would suggest as I wrote:

wait and see if it's just temporary/use melatonin/use kal phos/other sleep meds.

If nothing helps and the person still wants to use ldn I would suggest: to try to take it in the mornings. As I said; I would not suggest this to MS'ers. It seems that all with MS have to take ldn in the night, otherwise it wouldn't help them?!..

I have Crohns Disease. I started using ldn a year ago. In January I had a flare. It wouldn't go away, and Crohns flares are often lasting for 3 - 6 months for me. I increased the dose from 4.5 mg to 6.0 mg, and felt a bit better. I added prednisone in smaller doses than usual because I started to panic and got afraid that this time I may be would have a full blown flare. It got better within days. I stayed on this for some weeks. The flare dissapeared, and I was of course wondering if it was because I did the right thing.

Now in August I got a new flare. I did the same, and the flare dissapeared within 14 days. I have been weaning off of prednisone and am now using 2.5 mg every day. I feel fine.

I have also tried to use ldn in the morning. It worked very well for me, I was having sleep disturbances as a side effect, I got really, really tired. When taking it in the morning this was not an option anymore, felt energic and was not in a need for 2 naps as I would when taking ldn in the evening. There are some users in here taking ldn in the morning, and they say it's giving them the same help as taking it in the evening.

LDN is a mild medication. We know for sure what meds to take or not to take with LDN. Crystal use to send out a list on those. Prednisone was earlier one of those. It seems now that prednisone is one of the meds that now can be taken as an adjunct therapy to LDN.

We have untill now only had anecdotal experiences to rely on. One group of people with a lot of experience is answering posts in this forum. Just a few works in the medical field. The rest of us are users trying to give advices. Those advices may vary due to what disease we are talking about or even what person who is answering you. This may feel a bit confusing for new users but all new users have doctors they can ask too.

(but your doctor may have no answer, this is new to doctors too)....

continue to use the forum to ask questions, choose to ask the people having the same disease as you, they know a lot more than others and will give you better answers...

Hope this helped!

Kindest regards,

Ingrid

Re: [low dose naltrexone] Info on sleep disturbances please> > >> > > ,> > >> > > On some people get sleep disturbances and mostly it's just vivid > dreams.> > > I had them for 2 or 3 nights when I started and wish they'd come > back as> > > I enjoyed them!!> > >> > > > > >> > > Hudson wrote:> > >>> > >> I'm just concerned as I live by myself. Are the sleep > disturbances> > >> usually horrible in nature or just vivid

dreams?> > >> I'm not scared (LOL) I just don't want to wake up firing my > pistol at> > >> some imaginary monsters or something.> > >> Are you generally exhausted the following day? And this should > go on> > >> for what two weeks? I'm just not real clear> > >> On what to expect but I guess I'll find out because I know I can > trust> > >> Skip's Pharmacy. Any comments would be> > >> greatly appreciated.> > >>> > >> > > >> > >> > > ------------------------------------> > >> > >

[Guest guest]

-As you can see, from Art's survey, there aren't so many people with

MS that take 3 instead of 4.5.. This is not a forum to argue about

it, I had just never heard of taking LDN in the mornings or, taking

more than the recommended dose of LDN.

-- In low dose naltrexone , Gunn Dybfest

<gunn.ingrid@...> wrote:

>

> No, I am not a doctor or in the medical field. Taking smaller or

bigger doses: You just have to feel if you feel better or not. Why

does so many MS'ers use only 3 mg instead of 4.5 mg? They feel better

on that dose.

>  

> If a new ldn user take 4.5 mg ldn in the evening and they gets

unbearable side effects due to sleep disturbances, I would suggest as

I wrote:

> wait and see if it's just temporary/use melatonin/use kal

phos/other sleep meds.

> If nothing helps and the person still wants to use ldn I would

suggest: to try to take it in the mornings. As I said; I would not

suggest this to MS'ers. It seems that all with MS have to take ldn in

the night, otherwise it wouldn't help them?!..

> I have Crohns Disease. I started using ldn a year ago. In January I

had a flare. It wouldn't go away, and Crohns flares are often lasting

for 3 - 6 months for me. I increased the dose from 4.5 mg to 6.0 mg,

and felt a bit better. I added prednisone in smaller doses than usual

because I started to panic and got afraid that this time I may be

would have a full blown flare. It got better within days. I stayed on

this for some weeks. The flare dissapeared, and I was of course

wondering if it was because I did the right thing.

> Now in August I got a new flare. I did the same, and the flare

dissapeared within 14 days. I have been weaning off of prednisone and

am now using 2.5 mg every day. I feel fine.

>  

> I have also tried to use ldn in the morning. It worked very well

for me, I was having sleep disturbances as a side effect, I got

really, really tired. When taking it in the morning this was not an

option anymore, felt energic and was not in a need for 2 naps as I

would when taking ldn in the evening. There are some users in here

taking ldn in the morning, and they say it's giving them the same

help as taking it in the evening.

>  

> LDN is a mild medication. We know for sure what meds to take or not

to take with LDN. Crystal use to send out a list on those. Prednisone

was earlier one of those. It seems now that prednisone is one of the

meds that now can be taken as an adjunct therapy to LDN.

> We have untill now only had anecdotal experiences to rely on. One

group of people with a lot of experience is answering posts in this

forum. Just a few works in the medical field. The rest of us are

users trying to give advices. Those advices may vary due to what

disease we are talking about or even what person who is answering

you.  This may feel a bit confusing for new users but all new users

have doctors they can ask too.

> (but your doctor may have no answer, this is new to doctors too)....

> continue to use the forum to ask questions, choose to ask the

people having the same disease as you, they know a lot more than

others and will give you better answers...

> Hope this helped!

> Kindest regards,

>  Ingrid

>

>

>

> Re: [low dose naltrexone] Info on sleep disturbances

> please

> > > >

> > > > ,

> > > >

> > > > On some people get sleep disturbances and mostly it's just

> vivid

> > dreams.

> > > > I had them for 2 or 3 nights when I started and wish they'd

> come

> > back as

> > > > I enjoyed them!!

> > > >

> > > >

> > > >

> > > > Hudson wrote:

> > > >>

> > > >> I'm just concerned as I live by myself. Are the sleep

> > disturbances

> > > >> usually horrible in nature or just vivid dreams?

> > > >> I'm not scared (LOL) I just don't want to wake up firing my

> > pistol at

> > > >> some imaginary monsters or something.

> > > >> Are you generally exhausted the following day? And this

should

> > go on

> > > >> for what two weeks? I'm just not real clear

> > > >> On what to expect but I guess I'll find out because I know I

> can

> > trust

> > > >> Skip's Pharmacy. Any comments would be

> > > >> greatly appreciated.

> > > >>

> > > >>

> > > >

> > > >

> > > > ------------------------------------

> > > >

> > > >

[Guest guest]

Just to keep the record straight this wasn't my survey, although I

did participate in it. Maureen is the one who conducted the survey

and had it posted on her LDN website which she's shutting down.

http://www.gazorpa.com/

And yes most people in that survey with MS did/do take 4.5mgs LDN.

-Art

My MS/LDN Story:

http://tinyurl.com/5tcp6r

--

>

> -As you can see, from Art's survey, there aren't so many people

with

> MS that take 3 instead of 4.5.. This is not a forum to argue about

> it, I had just never heard of taking LDN in the mornings or,

taking

> more than the recommended dose of LDN.

>

[Guest guest]

Hi, and welcome to this board! :-)....

Yes, you could be right, your doctor may rx it for you, and as you write, it's smart researching as much as possible before visiting your Dr.

Here's a link that could be useful for you,

http://www.webspawner.com/users/avoidthesedrugsonldn/index.html

friendly regards from

Hope you will keep us informed how you're doing on LDN, and do ask questions whenever you want... Ingrid

[low dose naltrexone] Re: LDN

Hi Gunn,

I¢m new here and this is my first post. I looked in the files and cannot find anything about other meds not to take with LDN. Could someone steer me to it? I have Post-Polio Syndrome and I read in the archives here that it may help me. I feel my family doctor will Rx it if I have researched it thoroughly. I have other medical issues so I would like to see if it interferes with any of the meds I¢m on. At Rxlist.com, they state that the studies between Revia and drugs other than opiates had not been performed.

Thank you,

>>>LDN is a mild medication. We know for sure what meds to take or not to take with LDN. Crystal use to send out a list on those. Prednisone was earlier one of those. It seems now that prednisone is one of the meds that now can be taken as an adjunct therapy to LDN<<<

[Guest guest]

Hello Kathleen,

I am here to  answer your questions.   I will email you privately  so we can

correspond in detail.

Dee

http://www.ldn4cancer.com

From: kathleenwendi <hdriders@...>

Subject: [ ] ldn

Date: Monday, November 10, 2008, 1:05 PM

I would like to find out where I can get the LDN to start taking it.

I would also like to talk

with Dee the moderator of this mssg board to find out some other information

about what

she is using for her cancer. Thanks....

[Guest guest]

There is an LDN group that would probably be able to help you find

the information you need.

ar

On Mon, 10 Nov 2008 13:05:26 -0000, " kathleenwendi "

<hdriders@...> said:

> I would like to find out where I can get the LDN to start taking it. I

> would also like to talk

> with Dee the moderator of this mssg board to find out some other

> information about what

> she is using for her cancer. Thanks....

>

>

> ------------------------------------

>

>

[Guest guest]

Just a thought - Cerebrex might be good for cancer pain. what kind of cancer? Then there is Gabopentin and amitriptyline.................

Celia

[Guest guest]

>

> Does anyone out there no of a doctor in Indiana close to Indianapolis

> that will proscribe LDN. We have ordered it from canada but would

love

> too get it here.

> Thanks

>

the best i can give you is a doctor in dayton,ohio. about 1 1/2 hours

east of indi. a neuro named jacob kitchner. he perscribed it for me

with little objection and gave me permission to give his name out. hes

pleased with my progress on the ldn

its jacob kitchner@937-339-8603

hes a decent guy and hes willing to work with his patients. he knows

and understands the paetnership between doctor and patient

[Guest guest]

i think this may have accidently been sent directly to me instead of

the group......

>>My neurologist is in Fort Wayne, IN and will prescribe LDN. He

isn't a big fan of ldn and won't suggest it, but when you request it,

he will write a prescription. His name is Ajay Gupta, phone # 260-

460-3100. His nurse practitioner Kay, is nice enough but also down on

LDN. She told me I am playing with fire. Just a heads up because

there is some resistance but I do think they are a good group. Hope

this helps.

<<

so theres two options for that lady in indianapolis. niether one is

exactly 'close' but theyre there.

> >

> > Does anyone out there no of a doctor in Indiana close to

Indianapolis

> > that will proscribe LDN. We have ordered it from canada but

would

> love

> > too get it here.

> > Thanks

> >

>

>

> the best i can give you is a doctor in dayton,ohio. about 1 1/2

hours

> east of indi. a neuro named jacob kitchner. he perscribed it for me

> with little objection and gave me permission to give his name out.

hes

> pleased with my progress on the ldn

>

> its jacob kitchner@937-339-8603

>

> hes a decent guy and hes willing to work with his patients. he

knows

> and understands the paetnership between doctor and patient

>

[Guest guest]

Crystal, needing a Dr who will prescribe in Winchester,VA., can you help, this is for a friend of a friend..... Thanks so much for that you do......

Celia

celia@...

[Guest guest]

Basically I cannot know for sure why the response to LDN would have been OK for awhile and then you got a poor response. However, there is a phenomenon that happens to some people that as the immune system is shifting (usually from T2 to T1) right after starting LDN, the immune system drops and people get an infection, cold, flu, cold sore, etc. which is usually short lived. Candida tends to overgrow or a virus will flare up. These infections are usually short-lived unless something needs treatment. As usual, I need to emphasize that seldom is LDN a stand-alone treatment, but accompanies other strategies their body needs, especially a healthy diet.

Any change in stools, hunger, thirst, sleeping?

From what pharmacy are you getting your LDN? (It needs to be one who knows how to make it with the right immediate-action filler).

What is your weight? Why did you start on 3mg rather than 4.5mg?

Caps or cream?

What time do you take it (or put it on)?

Are you taking any prescriptions drugs?

Are you a big bread/carbohydrate/sugar eater?

Ever been tested for candida (yeast) or gut bacterial infestation?

Ever been checked for hypothyroidism?

Would you be willing to stop all casein (milk products) and gluten (wheat, rye, barley and oats) for a week and see if you feel better? A study done several years ago showed that 30% of us have some degree of celiac disease (intolerance/allegy to wheat) even though the clinical symptoms may not be obvious enough to alert most people to that. When anyone in that 30% of persons stops eating wheat, they feel a lot better. The LDN may be acting like the opioid antagonist it is and causing a withdrawal reaction from taking away your fix, even if only for a few hours.

Try to hang in for awhile longer, and it will probably get better. These setbacks usually do not last long unless something like a yeast infection is stubborn without specific treatment.

Dr. JM

From: Mills <jonathan@...>Subject: ldnjmccandless@...Date: Friday, February 6, 2009, 12:05 PMDear Dr McCandless,

I hope you can help me with a question re LDN. I have been on 3mg for 6 weeks

and although started to feel great at the beginning now usually wake up in the

morning with a headache and nausea and a feeling of being heavily drugged, e.g.

hard to get up, exhausted. I have CFS and some kind of autoimmune arthritis. I

sometimes take half a valium to help sleep.

Thanks

regards

[Guest guest]

This liquid LDN needs to be stored on refigerator & this method makes the

cost under a dollar for me. Just has to be shaked a little till disolved.

[Guest guest]

Hi Everyone:

Just checking to see if anyone has tried LDN (Low Dose Naltrexone) along with

the AP for Scleroderma or RA?

I've been reading up on this. It seems to get low thyroid active again, but need

to be carefully monitored that it does not become hyperthyroid. If autoimmune

conditions are effected by the thyroid, I'm wondering if this might be something

to consider.

Any thoughts?

Roni

[Guest guest]

I have came across one RAer who swears by LDN but have never got around to

trying it. I, too, would love to hear from those who have benefitted from it

though.

Ken.

From: rbarna dejazzd.com <rbarna@...>

Subject: Re: rheumatic LDN

rheumatic

Date: Monday, February 16, 2009, 3:47 PM

Hi Everyone:

Just checking to see if anyone has tried LDN (Low Dose Naltrexone) along with

the AP for Scleroderma or RA?

I've been reading up on this. It seems to get low thyroid active again, but need

to be carefully monitored that it does not become hyperthyroid. If autoimmune

conditions are effected by the thyroid, I'm wondering if this might be something

to consider.

Any thoughts?

Roni

[Guest guest]

Hello to Everyone:

of this group posted an email on 02/02/09 advising he started

using LDN and would be the 'guinea pig' for the group. I did send his a

follow-up email to get his current status but he has not yet responded. Perhaps

will write to us soon.

Diane Springob

________________________________

From: Ken Pearson <maputo95@...>

rheumatic

Sent: Monday, February 16, 2009 11:12:30 AM

Subject: Re: rheumatic LDN

I have came across one RAer who swears by LDN but have never got around to

trying it. I, too, would love to hear from those who have benefitted from it

though.

Ken.

From: rbarna dejazzd.com <rbarnadejazzd (DOT) com>

Subject: Re: rheumatic LDN

rheumatic@grou ps.com

Date: Monday, February 16, 2009, 3:47 PM

Hi Everyone:

Just checking to see if anyone has tried LDN (Low Dose Naltrexone) along with

the AP for Scleroderma or RA?

I've been reading up on this. It seems to get low thyroid active again, but need

to be carefully monitored that it does not become hyperthyroid. If autoimmune

conditions are effected by the thyroid, I'm wondering if this might be something

to consider.

Any thoughts?

Roni

[Guest guest]

Maybe it didn't work out and that may be why we haven't heard from him.  Hope he

reads this and follows up.  Dolores & Mike

From: rbarna dejazzd.com <rbarnadejazzd (DOT) com>

Subject: Re: rheumatic LDN

rheumatic@grou ps.com

Date: Monday, February 16, 2009, 3:47 PM

Hi Everyone:

Just checking to see if anyone has tried LDN (Low Dose Naltrexone) along with

the AP for Scleroderma or RA?

I've been reading up on this. It seems to get low thyroid active again, but need

to be carefully monitored that it does not become hyperthyroid. If autoimmune

conditions are effected by the thyroid, I'm wondering if this might be something

to consider.

Any thoughts?

Roni

[Guest guest]

hi roni

i tried it for RA last spring summer.it worked quite well on RA quite

quickly along with diet. however after a few weeks i felt so awful i had

to stop it - dizziness, nausea, migraines. not sure why. i seem to be

sensitive to most meds.

monique

Hi Everyone:

Just checking to see if anyone has tried LDN (Low Dose Naltrexone) along

with the AP for Scleroderma or RA?

I've been reading up on this. It seems to get low thyroid active again,

but need to be carefully monitored that it does not become hyperthyroid.

If autoimmune conditions are effected by the thyroid, I'm wondering if

this might be something to consider.

Any thoughts?

Roni

[Guest guest]

low dose naltrexone is a good group for info on ldn.

judy rudin there has RA and does well with ldn and antibiotics. search

the archives there for messages on RA. most ppl on the list are taking

ldn for MS.

monique