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Old 10-07-2008, 09:50 PM #471
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the stuff i had read, and im sorry i dont remember what pages to quote, recomended a dose of 4.5mg for those(didnt specify male V. female)who are not grossly underweight. for the more petite of our LDN brethren i would think that a smaller does of 3mg would be more up their ally. it also makes me wonder about those of us with that lightning quick metabolism.(i can eat a gallon of ice cream and not even burp) the naltrexone needs to be in our systems long enough to do its job, but what if our systems metabolize it out before that gets done?which brings me to my real question....... what time do we all take our LDN? i understand that the party line is to take it somewhere between 9pm and 3am, but what is the optimal time? somewhere closer to 9 or closer to 3? do we take it on an empty stomach or full?does it make a bit of difference?
i guess what im asking is what can we do to aide the naltrexone on its way and to do its job?
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Old 10-07-2008, 09:59 PM #472
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in all the reading the other posts i forgot to ask how herekitty's MRI wentis yeh staying close to stable at least?
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Old 10-08-2008, 05:54 AM #473
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Quote:
Originally Posted by FluteMaker View Post
the stuff i had read, and im sorry i dont remember what pages to quote, recomended a dose of 4.5mg for those(didnt specify male V. female)who are not grossly underweight. for the more petite of our LDN brethren i would think that a smaller does of 3mg would be more up their ally. it also makes me wonder about those of us with that lightning quick metabolism.(i can eat a gallon of ice cream and not even burp) the naltrexone needs to be in our systems long enough to do its job, but what if our systems metabolize it out before that gets done?which brings me to my real question....... what time do we all take our LDN? i understand that the party line is to take it somewhere between 9pm and 3am, but what is the optimal time? somewhere closer to 9 or closer to 3? do we take it on an empty stomach or full?does it make a bit of difference?
i guess what im asking is what can we do to aide the naltrexone on its way and to do its job?
I was told (by the doctor who prescribes my LDN) that it really doesn't matter what time I take it....but that I just need to be consistent and take it at the same time. Now, he did say it needed to be before I went to bed for the night. So, I take it around 8 PM every night. He also told me it didn't matter if I ate anything right before I took it.

BTW...I tried to go up to 4.5 and had leg pain so I went back down to 3.0. And I am not considered petite....I'm 5'8".

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Originally Posted by FluteMaker View Post
in all the reading the other posts i forgot to ask how herekitty's MRI wentis yeh staying close to stable at least?
Thanks for asking! I haven't gotten the results yet. Hopefully I will today. My Neuro should have gotten the films by 5 PM yesterday. I'll post the results as soon as I know what they are.
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Old 10-08-2008, 11:42 AM #474
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Dr Bihari was of the impression (in 1994) that anywhere between 1.0mg and 10.mg was sufficient, with the therapeutic effects below 1.0mg being quite small. He suggested that 1.5mg to 3.0mg was the dosage “at which Mu receptor sites are substantially blocked while the Delta sites are substantially unblocked”. Dosages above that would cause “the effect of the preferential blocking action against Mu over Delta receptor sites (to) disappear, since the amount of the drug is large enough to cause at least substantial blocking of Delta sites while the Mu sites remain fully blocked.”

Ultimately (for whatever reason), he started recommending 4.5mg as the optimal dosage, and nothing over that as a rule.

Another of Dr Bihari’s recommendations was that we take LDN between 9pm – 3am, because our “POMC mRNA levels were elevated during the dark period, reaching a maximum level at 0200 h that was 2-fold higher than that occurring during the light period”. What difference that makes, I'm not sure . . . but this was apparently how he came to the recommendation that we should take it during those hours.

He further recommended suggested that LDN was not compatible with the interferons.

I know there are people who aren’t (or can’t) follow those guidelines, and LDN is working in spite of that. However, those are the “exceptions” vs. the rule, and it would stand to reason that we would TRY to follow the rule, where possible.

For years now, the plan was for people to start at 3 mg LDN (or 1.5mg for those who were particularly sensitive to meds), but once they were managing that dose they would attempt to increase the dose to 4.5 mg. For some, there is a transient increase in MS symptoms when we are upping the dosage, such as weakness, stiffness, changes in sensation, muscle spasm, pain, sleep disturbances, fatigue or tiredness. These symptoms usually disappeared within the first week of treatment, but apparently in less than five percent of people, these side-effects may be more severe or last as long as several weeks. This is considered “normal”, or at least nothing to be concerned about . . . but many people give up too early when they don’t see immediate improvement with NO side-effects.

Rarely, symptoms may persist for two or even three months and in this situation, the ultra-low 1.5 or 2 mg dose is recommended, but still not as a permanent solution . . . as a gentler “introduction” to the med. However, normally, once the body adjusts to LDN the dosage can be increased.

Over years of trial and error of trying to follow these recommendations, some men (and petite women) found they experienced ongoing side effects at 4.5 mg, and were better off at 3 mg . . . and some like me (and Sally) had to try a few times before we were able to tolerate “optimum”. In my case, I also have to drop LDN down at the start of the cold season . . . so obviously not everyone can stay consistently at 4.5mg, even if they are normally perfectly fine at this level.

Ideally, everyone DOES want to TRY to persevere to 4.5mg (or min 3.0mg), but I suppose if they try for several times, for several weeks and still CAN’T adjust . . . then so be it. I have run into several people who have not seen any great improvement for several months, or even suffered with some side-effects for that long, but EVENTUALLY their bodies adjusted and LDN worked for them.

Those people (who are very sensitive) are very FEW and far between though, and most do try to get up to between 3.0mg and – 4.5mg. I would imagine that 2.0mg could be helpful anyway, especially for some symptoms, and perhaps maybe even for the disease process. I haven’t met anyone who is on that level of LDN (alone, without using Copaxone too), and where it has proven successful for reducing relapses/progression in the long run. Most I've run into at that level are on combo therapy (use LDN for symptoms only), or they quit after a few years because they don’t feel it is helping the disease process.

I certainly would stick with a low dosage if that was all I could handle, but I wouldn’t give up trying to get to optimal just because of a few transient side-effects. I just hate to see people give up so easily, and not get the benefit of a dosage which may ultimately be therapeutic for them.

Cherie
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Old 10-08-2008, 12:09 PM #475
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I don't disagree with any of this, Cherie..

Quote:
Originally Posted by lady_express_44 View Post
Dr Bihari was of the impression (in 1994) that anywhere between 1.0mg and 10.mg was sufficient, with the therapeutic effects below 1.0mg being quite small. He suggested that 1.5mg to 3.0mg was the dosage “at which Mu receptor sites are substantially blocked while the Delta sites are substantially unblocked”. Dosages above that would cause “the effect of the preferential blocking action against Mu over Delta receptor sites (to) disappear, since the amount of the drug is large enough to cause at least substantial blocking of Delta sites while the Mu sites remain fully blocked.”

Ultimately (for whatever reason), he started recommending 4.5mg as the optimal dosage, and nothing over that as a rule.

Another of Dr Bihari’s recommendations was that we take LDN between 9pm – 3am, because our “POMC mRNA levels were elevated during the dark period, reaching a maximum level at 0200 h that was 2-fold higher than that occurring during the light period”. What difference that makes, I'm not sure . . . but this was apparently how he came to the recommendation that we should take it during those hours.

He further recommended suggested that LDN was not compatible with the interferons.

I know there are people who aren’t (or can’t) follow those guidelines, and LDN is working in spite of that. However, those are the “exceptions” vs. the rule, and it would stand to reason that we would TRY to follow the rule, where possible.

For years now, the plan was for people to start at 3 mg LDN (or 1.5mg for those who were particularly sensitive to meds), but once they were managing that dose they would attempt to increase the dose to 4.5 mg. For some, there is a transient increase in MS symptoms when we are upping the dosage, such as weakness, stiffness, changes in sensation, muscle spasm, pain, sleep disturbances, fatigue or tiredness. These symptoms usually disappeared within the first week of treatment, but apparently in less than five percent of people, these side-effects may be more severe or last as long as several weeks. This is considered “normal”, or at least nothing to be concerned about . . . but many people give up too early when they don’t see immediate improvement with NO side-effects.

Rarely, symptoms may persist for two or even three months and in this situation, the ultra-low 1.5 or 2 mg dose is recommended, but still not as a permanent solution . . . as a gentler “introduction” to the med. However, normally, once the body adjusts to LDN the dosage can be increased.

Over years of trial and error of trying to follow these recommendations, some men (and petite women) found they experienced ongoing side effects at 4.5 mg, and were better off at 3 mg . . . and some like me (and Sally) had to try a few times before we were able to tolerate “optimum”. In my case, I also have to drop LDN down at the start of the cold season . . . so obviously not everyone can stay consistently at 4.5mg, even if they are normally perfectly fine at this level.

Ideally, everyone DOES want to TRY to persevere to 4.5mg (or min 3.0mg), but I suppose if they try for several times, for several weeks and still CAN’T adjust . . . then so be it. I have run into several people who have not seen any great improvement for several months, or even suffered with some side-effects for that long, but EVENTUALLY their bodies adjusted and LDN worked for them.

Those people (who are very sensitive) are very FEW and far between though, and most do try to get up to between 3.0mg and – 4.5mg. I would imagine that 2.0mg could be helpful anyway, especially for some symptoms, and perhaps maybe even for the disease process. I haven’t met anyone who is on that level of LDN (alone, without using Copaxone too), and where it has proven successful for reducing relapses/progression in the long run. Most I've run into at that level are on combo therapy (use LDN for symptoms only), or they quit after a few years because they don’t feel it is helping the disease process.

I certainly would stick with a low dosage if that was all I could handle, but I wouldn’t give up trying to get to optimal just because of a few transient side-effects. I just hate to see people give up so easily, and not get the benefit of a dosage which may ultimately be therapeutic for them.

Cherie
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Old 10-12-2008, 01:20 PM #476
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Hi, all you LDNers, out there...How in the he** are Ya?

I'm doing pretty well for an old babe.. I call my Doc tomorrow for my LDN check-up appt. and my umpteenth LDN script renewal...... I will take my 2008th capsule tonight..

I have stayed well, without illness, for a long time now (knock on wood). I'm sure the LDN is helping with that, because I'm exposed to my Grands many germs and haven't caught anything yet. (knock on wood repeatedly..)

I know some of you LDN newbys are suffering with a few bugs or flares, so hang in there and maybe when you get all better, LDN will help you stay that way..

So....how's it going today?? Next.......
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Old 10-12-2008, 01:38 PM #477
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I'm continuing with my 3.0 mg dosage each night. I'm still very dizzy and lightheaded and I go to see my Neuro tomorrow. Whenever I have a flare up these are the same sx I always get so hopefully it's just an old lesion causing all the havoc. I don't feel bad....just feel dizzy. I had an MRI last Monday so we'll go over the results tomorrow. Wish me luck!

BTW, I had a sinus infection but it cleared up with the abx I took. I'm thinking this may have caused my flare up. I have no plans on discontinuing the LDN...I believe it has helped me.
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Old 10-12-2008, 05:25 PM #478
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I have had yet another amazing week on LDN. I now can go to the grocery store by myself for the first time in ten years, and shop with no walking aid. I can just jump in the car and mail a letter. I can close my eyes in the shower when I rinse my hair, and not fall down. I can stand in line! My hubby even mentioned today that I seem to have a spring in my step. I now sometimes have a few days in a row where my symptoms are similar to what I had twenty years ago. I am starting to believe that I have just been given a second lease on life. I just can’t believe the difference.
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Old 10-12-2008, 06:51 PM #479
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I have had yet another amazing week on LDN. I now can go to the grocery store by myself for the first time in ten years, and shop with no walking aid. I can just jump in the car and mail a letter. I can close my eyes in the shower when I rinse my hair, and not fall down. I can stand in line! My hubby even mentioned today that I seem to have a spring in my step. I now sometimes have a few days in a row where my symptoms are similar to what I had twenty years ago. I am starting to believe that I have just been given a second lease on life. I just can’t believe the difference.
That is one of the perks, that I noticed, as well.

Keep up the good work, Marion..
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Old 10-12-2008, 07:55 PM #480
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I'm continuing with my 3.0 mg dosage each night. I'm still very dizzy and lightheaded and I go to see my Neuro tomorrow. Whenever I have a flare up these are the same sx I always get so hopefully it's just an old lesion causing all the havoc. I don't feel bad....just feel dizzy. I had an MRI last Monday so we'll go over the results tomorrow. Wish me luck!

BTW, I had a sinus infection but it cleared up with the abx I took. I'm thinking this may have caused my flare up. I have no plans on discontinuing the LDN...I believe it has helped me.
I'm wishing you good luck tomorrow! Hope the doc has nothing but good news for you.

As for the lightheadedness and dizziness, I feel the same. Like I haven't eaten for a couple of days.

I bumped my dosage down to 3.0 last week.

Marion, so happy to hear your continued good success.
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