Re: Been on LDN for 7 months and nothing's changed

[Guest guest]

How are you making it? Maybe you're not doing it correctly and are not getting 4ml a day. ?

you're making it as per http://goodshape.net/HomemadeLDN.html the goodshape site?

are you dissolving the tabs or pulverizing them into powder first?

where are you getting the 50MG tabs from? Are they ReVia?

How long as you keeping the liquid? Refrigerating it?

and of course, WHEN are you taking it?

[low dose naltrexone] Been on LDN for 7 months and nothing's changed

HiI have been taking liquid LDN for 7 months and have been on 4ml since July. I have MS, not sure what type as I seem to be getting very gradually worse, no relapses or remittance to speak of. I have not noticed any difference in symptoms and still seem to be getting slowly worse. I would have thought by now that at least I would not be getting worse. I am not being prescribed LDN by my Neuro or GP so I am not doing it under any kind of supervision, therefore I have nobody to ask advice from. I think the vast majority of people here have been helped by LDN, those who haven’t don’t subscribe. So has anybody got any advice?ThanksRebekah

[Guest guest]

I’m not making it, I get it from a pharmacy in the UK. I take it at around 10pm every night.

Rebekah

LarryGC wrote:

How are you making it? Maybe you're not doing it correctly and are not getting 4ml a day. ?

you're making it as per http://goodshape.net/HomemadeLDN.html the goodshape site?

are you dissolving the tabs or pulverizing them into powder first?

where are you getting the 50MG tabs from? Are they ReVia?

How long as you keeping the liquid? Refrigerating it?

and of course, WHEN are you taking it?

[low dose naltrexone] Been on LDN for 7 months and nothing's changed

Hi

I have been taking liquid LDN for 7 months and have been on 4ml since July. I have MS, not sure what type as I seem to be getting very gradually worse, no relapses or remittance to speak of. I have not noticed any difference in symptoms and still seem to be getting slowly worse. I would have thought by now that at least I would not be getting worse. I am not being prescribed LDN by my Neuro or GP so I am not doing it under any kind of supervision, therefore I have nobody to ask advice from. I think the vast majority of people here have been helped by LDN, those who haven?t don?t subscribe. So has anybody got any advice?

Thanks

Rebekah

[Guest guest]

And yes I do refrigerate it.

Rebekah

[Guest guest]

Hi Rebekah,There is more to treating MS than just taking LDN. You need to consider such important factors as diet, food allergies, and stress. To learn more, visithttp://tinyurl.com/grpm9Also, I would suggest increasing your nightly dose so that you are getting 4.5 mg of Naltrexone.With best wishes,Dudley Delany

dudley_delanyFrom: Rebekah

Sent: Wednesday, December 26, 2007 8:50 AM

low dose naltrexone

Subject: [low dose naltrexone] Been on LDN for 7 months and nothing's changed

Hi

I have been taking liquid LDN for 7 months and have been on 4ml since July. I have MS, not sure what type as I seem to be getting very gradually worse, no relapses or remittance to speak of. I have not noticed any difference in symptoms and still seem to be getting slowly worse. I would have thought by now that at least I would not be getting worse. I am not being prescribed LDN by my Neuro or GP so I am not doing it under any kind of supervision, therefore I have nobody to ask advice from. I think the vast majority of people here have been helped by LDN, those who haven’t don’t subscribe. So has anybody got any advice?

Thanks

Rebekah

[Guest guest]

Double check with the pharmacy on the filler that was used for your prescription AND caps of LDN should not be refrigerated. Refrigeration is a must, however, for naltrexone dissolved in water. mjh

Posted by: "Rebekah" rebekah@... rkortokraks

Wed Dec 26, 2007 8:14 am (PST)

The pharmacy that makes my LDN supplies the majority of LDN users in the UKso I would be very surprised if it was anything to do with them.See AOL's top rated recipes and easy ways to stay in shape for winter.

[Guest guest]

See http://www.low dose naltrexone.org/comp_pharm.htm

Rebekah wrote:

> I’m not making it, I get it from a pharmacy in the UK. I take it at

> around 10pm every night.

>

> Rebekah

[Guest guest]

Rebekah,

I would consider upping your LDN. I've done this at a time of exacerbation and when my legs are just not functioning well (like right now with the colder weather). I've done this under advise from both the doctor who prescribes it to me and from Skip the pharmacist. I only weigh 115 pounds, but weight and LDN dosage doesn't really seem to make a difference to me. Just a thought, but I'd research this option if I were you. HOWEVER, all this being said, LDN might not work for you the way it does for others. My friend who "discovered" LDN for us has this experience. She's on 4.5 and has been for close to 2 years. She was doing "okay" and her symptoms were stabilized and then recently she's had a terrible time and her legs are just not doing well at all. She isn't walking with a cane fulltime, but some days it is necessary. I think everyone is different and

responds to medications differently.

But do check into the higher LDN option and see if that might do it for you. Chrisie

[low dose naltrexone] Been on LDN for 7 months and nothing's changed

HiI have been taking liquid LDN for 7 months and have been on 4ml since July. I have MS, not sure what type as I seem to be getting very gradually worse, no relapses or remittance to speak of. I have not noticed any difference in symptoms and still seem to be getting slowly worse. I would have thought by now that at least I would not be getting worse. I am not being prescribed LDN by my Neuro or GP so I am not doing it under any kind of supervision, therefore I have nobody to ask advice from. I think the vast majority of people here have been helped by LDN, those who haven¢t don¢t subscribe. So has anybody got any advice?ThanksRebekah

[Guest guest]

>

> Hi

> I have been taking liquid LDN for 7 months and have been on 4ml

since July.

> I have MS, not sure what type as I seem to be getting very gradually

worse,

> no relapses or remittance to speak of. I have not noticed any

difference in

> symptoms and still seem to be getting slowly worse. I would have

thought by

> now that at least I would not be getting worse. I am not being

prescribed

> LDN by my Neuro or GP so I am not doing it under any kind of

supervision,

> therefore I have nobody to ask advice from. I think the vast

majority of

> people here have been helped by LDN, those who haven¹t don¹t

subscribe. So

> has anybody got any advice?

>

> Thanks

>

> Rebekah

>

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

Go up to 4.5mg and find an aternative medicine doc who can check your

candida yeast load, eliminate all gluten from your diet.

Make sure your pharmcy uses pure naltrexone powder and does not use

any calcium carbonate as a filler. Best fillers are lactose, non-

dairy/non-refrigerate Acidophilus, Gelatin, Avicel(cellulose).

[Guest guest]

The pharmacy that makes my LDN supplies the majority of LDN users in the UK

so I would be very surprised if it was anything to do with them.

C wrote:

> See http://www.low dose naltrexone.org/comp_pharm.htm

>

> Rebekah wrote:

>> I¹m not making it, I get it from a pharmacy in the UK. I take it at

>> around 10pm every night.

>>

>> Rebekah

>

>

>

>

[Guest guest]

Fair enough, was just a suggestion for a potential contributing factor.

In that case I'd look at all the other things people have suggested,

especially diet. Also, it has been stated by Dr Bihari himself from

memory that in some cases it can take up to 9 months to become effective.

Rebekah wrote:

> The pharmacy that makes my LDN supplies the majority of LDN users in the UK

> so I would be very surprised if it was anything to do with them.

>

> C wrote:

>

>

>> See http://www.low dose naltrexone.org/comp_pharm.htm

>>

[Guest guest]

Hi Dudley,

I am a single mother of 4 year old twins boys so avoiding stress is fairly difficult for me. Also sticking to any kind of restrictive diet is hard as I would have to make them separate food from me and I don’t have the time, money or energy for that. I eat a healthy diet but don’t totally avoid gluten and dairy. I have no idea where to start on food allergies, one nutritionist tells me one long list of things to avoid , then another tells me something different the same with supplements. It all gets really confusing and stressful in the end. I might try and increase my dose although last time I tried I couldn’t sleep and when I get woken at 7am by my kids that causes much more harm than good.

Rebekah

Dudley Delany wrote:

Hi Rebekah,

There is more to treating MS than just taking LDN. You need to consider such important factors as diet, food allergies, and stress. To learn more, visit

http://tinyurl.com/grpm9

Also, I would suggest increasing your nightly dose so that you are getting 4.5 mg of Naltrexone.

With best wishes,

Dudley Delany

dudley_delany

From: Rebekah

Sent: Wednesday, December 26, 2007 8:50 AM

low dose naltrexone

Subject: [low dose naltrexone] Been on LDN for 7 months and nothing's changed

Hi

I have been taking liquid LDN for 7 months and have been on 4ml since July. I have MS, not sure what type as I seem to be getting very gradually worse, no relapses or remittance to speak of. I have not noticed any difference in symptoms and still seem to be getting slowly worse. I would have thought by now that at least I would not be getting worse. I am not being prescribed LDN by my Neuro or GP so I am not doing it under any kind of supervision, therefore I have nobody to ask advice from. I think the vast majority of people here have been helped by LDN, those who haven’t don’t subscribe. So has anybody got any advice?

Thanks

Rebekah

[Guest guest]

Get tested for lyme by Igenex, or Bowen Labs. If you have lyme, many misdiagnost

with MS,then you must kill the bacteria. Try the Marshall Protocol.com . The

when lyme is clear get on LDN.

________________________________

From: low dose naltrexone on behalf of Bren

Sent: Wed 12/26/2007 8:03 AM

low dose naltrexone

Subject: [low dose naltrexone] Re: Been on LDN for 7 months and nothing's changed

>

> Hi

> I have been taking liquid LDN for 7 months and have been on 4ml

since July.

> I have MS, not sure what type as I seem to be getting very gradually

worse,

> no relapses or remittance to speak of. I have not noticed any

difference in

> symptoms and still seem to be getting slowly worse. I would have

thought by

> now that at least I would not be getting worse. I am not being

prescribed

> LDN by my Neuro or GP so I am not doing it under any kind of

supervision,

> therefore I have nobody to ask advice from. I think the vast

majority of

> people here have been helped by LDN, those who haven¹t don¹t

subscribe. So

> has anybody got any advice?

>

> Thanks

>

> Rebekah

>

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

Go up to 4.5mg and find an aternative medicine doc who can check your

candida yeast load, eliminate all gluten from your diet.

Make sure your pharmcy uses pure naltrexone powder and does not use

any calcium carbonate as a filler. Best fillers are lactose, non-

dairy/non-refrigerate Acidophilus, Gelatin, Avicel(cellulose).

[Guest guest]

Hi Rebekah -

One thing that may help is taking L-glutamine (I believe someone

recently posted an article on this board about this). A couple of

scoops of this a day can help so much. What happens sometimes is that

we get pro-inflammatory responses in our body from leaky gut syndrome

which causes all kinds of things like internal inflammation,

allergies, asthma, etc. I'm wondering if you're inflamed internally

and thus the LDN can't do the job it's suppose to.

It might be helpful if you can keep gluten and dairy to a minimum as

much as possible, and take the L-glutamine. It can help systemically

keep inflammation and allergies down. This way you heal the gut which

helps so many things.

I know it can be challenging to eat very specifically while you're

responsible for children and other family members.I also know what

it's like when you have so many opinions coming at you telling you 10

different ways to treat the allergies, with 10 different kinds of

diets to follow. I would just treat systemically as much as you can.

Two of the best brands of L-glutamine I have taken are RenewLife

Intestinew and Carlson's powdered L-glutamine.

I am doing this for myself as well - treating the gut to keep

inflammation down so LDN can work in my favor. I was told that in my

own situation it could take up to a year. In the meantime I do what I

can in the form of diet, treat inflammation, and detox. I have

tremendous in this LDN therapy.

cathy

[Guest guest]

Thank you for your post . How do I find out whether I have leaky gut?

Rebekah

fishsalmon2001 wrote:

Hi Rebekah -

One thing that may help is taking L-glutamine (I believe someone

recently posted an article on this board about this). A couple of

scoops of this a day can help so much. What happens sometimes is that

we get pro-inflammatory responses in our body from leaky gut syndrome

which causes all kinds of things like internal inflammation,

allergies, asthma, etc. I'm wondering if you're inflamed internally

and thus the LDN can't do the job it's suppose to.

It might be helpful if you can keep gluten and dairy to a minimum as

much as possible, and take the L-glutamine. It can help systemically

keep inflammation and allergies down. This way you heal the gut which

helps so many things.

I know it can be challenging to eat very specifically while you're

responsible for children and other family members.I also know what

it's like when you have so many opinions coming at you telling you 10

different ways to treat the allergies, with 10 different kinds of

diets to follow. I would just treat systemically as much as you can.

Two of the best brands of L-glutamine I have taken are RenewLife

Intestinew and Carlson's powdered L-glutamine.

I am doing this for myself as well - treating the gut to keep

inflammation down so LDN can work in my favor. I was told that in my

own situation it could take up to a year. In the meantime I do what I

can in the form of diet, treat inflammation, and detox. I have

tremendous in this LDN therapy.

cathy

[Guest guest]

Hi Rebekah,

Have you looked into fish oil?

the link -

http://www.hon.ch/News/HSN/607573.html

Fish Oil Might Help Relieve MS

Omega-3 fatty acids ease immune dysfunction, study suggests

By Preidt

FRIDAY, Aug. 24 (HealthDay News) -- Fish oil containing omega-3 fatty

acids could benefit multiple sclerosis (MS) patients, a U.S. study

finds.

Omega-3 fatty acids contain eicosapentaenoic acid (EPA) and

docosahexaenoic acid (DHA), which affect blood proteins called matrix

metalloproteinase-9 (MMP-9) produced by the immune cells of MS

patients.

The new study was conducted by researchers at the Oregon Health &

Science University and the VA Medical Center in Portland. They had 10

MS patients receive 9.6 grams of fish oil per day.

After three months of taking the fish oil, the researchers noted a 58

percent decrease in MMP-9 levels secreted from the MS patients'

immune cells. There was also a significant increase in EPA and DHA

levels in the patient's red blood cell membranes.

" The findings confirm previous research findings that suggest the

intake of fish oil containing omega-3 fatty acids could provide a

measure of relief for those with MS, a disease that is progressive,

debilitating, and without a cure, " lead researcher L. Shinto said in

a prepared statement.

The study was presented this week at the American Association of

Naturopathic Physicians annual meeting, in Palm Springs, Calif.

Alana

>>>> There is more to treating MS than just taking LDN.

[Guest guest]

Rebekah - You can have someone do an intestinal permeability test, or

a stool test, but leaky gut is so common especially with autoimmune

challenges you can pretty much tell by symptoms alone. Many doctors

don't test for it. I watch what I eat, do the L-glutamine, probiotics

and a couple of other things. It helps with the allergies and such.

And healing the gut allows the LDN to work better, in my opinion,

since there's that much less the body's immune system has to do to

keep the gut in check. A healthy gut is so key to healing.

Here's a good website to check out just for leaky gut info. I don't

follow all the supplements they suggest:

http://www.allergyescape.com/leaky-gut-syndrome.html

cathy

>

> > Hi Rebekah -

> > One thing that may help is taking L-glutamine (I believe someone

> > recently posted an article on this board about this). A couple of

> > scoops of this a day can help so much. What happens sometimes is that

> > we get pro-inflammatory responses in our body from leaky gut syndrome

> > which causes all kinds of things like internal inflammation,

> > allergies, asthma, etc. I'm wondering if you're inflamed internally

> > and thus the LDN can't do the job it's suppose to.

> >

> > It might be helpful if you can keep gluten and dairy to a minimum as

> > much as possible, and take the L-glutamine. It can help systemically

> > keep inflammation and allergies down. This way you heal the gut which

> > helps so many things.

> >

> > I know it can be challenging to eat very specifically while you're

> > responsible for children and other family members.I also know what

> > it's like when you have so many opinions coming at you telling you 10

> > different ways to treat the allergies, with 10 different kinds of

> > diets to follow. I would just treat systemically as much as you can.

> > Two of the best brands of L-glutamine I have taken are RenewLife

> > Intestinew and Carlson's powdered L-glutamine.

> >

> > I am doing this for myself as well - treating the gut to keep

> > inflammation down so LDN can work in my favor. I was told that in my

> > own situation it could take up to a year. In the meantime I do what I

> > can in the form of diet, treat inflammation, and detox. I have

> > tremendous in this LDN therapy.

> >

> > cathy

> >

> >

>