Re: Re: I was taking too low of a dosage and I was not pr...

[Guest guest]

Sleep disturbances in the beginning are not uncommon. Seems like most experience this one. For the first 3 - 4 weeks, I slept very little, and would wake up at 3:00 AM wide awake. By 10:00 AM I would crash. After the 3 - 4 week period, this ended, and I sleep better than ever now. Sometimes 6 - 8 hours without getting up. This hadn't happened in nearly 5 years. It is different for everyone. I started on 3mg, then after 3 months went up to 4.5mg. I'm trying 6mg now and really believe that it is best for me. I was SO stiff to begin with that the stiffness isn't really an issue for me. Don't get me wrong, I wish it would go away, but none of the dosages made any difference in the stiffness. No worse or better. I'm on day 216 on LDN. Hang in there! (My opinion where trials are concerned...'they' want one dose for everyone, and that isn't even a possibility. I don't think 'they' will accomodate the individuality of this issue. So, take charge of your own health!))

Marcie (PPMS)

In a message dated 6/12/2004 2:39:19 PM Central Standard Time, hanneheidi4@... writes:

I don't understand what you mean( or dr. Bihari means)....

Protected? Protecteds against what?

I've been on LDN for 2 days (I know I'm NOT experienced at all) but my own intuition tells me to half my dose because I havent sleept in two days.. I fell unable to sleep.. So tonight I will try and take 1,5

[Guest guest]

Protected against PROGRESSION! That is what we are trying to halt! If you are one of the lucky ones who hasn't progressed very much, then I can see how this might not make sense, just take some of us at our word!! Progression is what you do not want!

Marcie (PPMS)

In a message dated 6/12/2004 2:44:30 PM Central Standard Time, logans@... writes:

low dose naltrexone

I have the same question, protected against what??? I started on 5mg---could not sleep at all, very, very stiff in mornings-----went to 3mgs experienced the same things----went to 1.5mgs, that dose was OK. Stayed on 1.5mgs for 5 weeks. Tonight I'm going to increase to 2.5mgs. Will keep everyone posted!!!

[Guest guest]

Perhaps Dr Bihari is referring to the protection from exacerbations that the LDN is thought to confer...

JT

I don't understand what you mean( or dr. Bihari means).... Protected? Protecteds against what? I've been on LDN for 2 days (I know I'm NOT experienced at all) but my own intuition tells me to half my dose because I havent sleept in two days.. I fell unable to sleep.. So tonight I will try and take 1,5

[Guest guest]

Hi y`all!

Marcie, I think your comments re. trials, individuality & taking charge of your own health are likely to prove right on!

Seems to me as though the desired expertise & understanding of LDN dosages will build up gradually through people sharing their experiences: Because of the potential variety, range & subtlety of it`s changing effects as the individual body adjusts to it, LDN`s almost "Will of the Wisp" nature, working as it apparently does, in the fleeting world of endorphins, seems unlikely to be tied down & adequately expressed in a simple,small, "one size fits (almost) all" range of doses any time soon! (Sorry about length of sentence!)

We are very fortunate in that unlike most pharmaceuticals, the effective dosage range of LDN is at such a low level & so has such a vast safety margin that most of us are able to vary our dosage size without having to concern ourselves about the risk of dangerous side effects.

...................Regarding the recent debate on the validity or otherwise of occasional days without LDN, it seems to me that there is a further point that may be relevant here: As I have mentioned previously, pre LDN, I had spent approx 13 years learning to minimize the effects of MS progression & become more generally healthy by adjusting my diet & taking many nutritional supplements, (-which I still do.) This being the case, & the ferocity of the MS having thus been considerably lessened, I think it very likely that any immediate potential danger (-if indeed there is one) of going "without protection" of LDN briefly is very much lessened. -It`s rather as though the MS "monsters hanging round the gate" have become slow, weak & sleepy. If, however one is still (unconsciously?!) by inappropiate food choices etc, keeping these monsters well fed & hence agressive and alert for an opportunity to attack, prehaps there is a greater downside to missing an LDN dose? -I don`t know whether or not this missing a dose occasionally is a good thing or not: Could this also vary? However, whichever view eventually predominates, I believe that those of us attending to our diets, taking a more holistic, almost completely drug free course are much more likely to find ourselves in a win-win situation! -What`s smart about going into an important match without fielding the best team available, or thinking it`s OK having players who are nursing a bad hangover?!

(In this context, I recall a posting on the MSRC message board in which someone observing that she had found the downside of days without LDN had been more marked prior to her commencing Ashton Embry`s Best Bet Diet.)

I have missed an LDN dose a few times, once or twice deliberately, while I had yet to reduce my dose sufficiently & my system felt too strained: Missing a day seemed to help! -I have accidentally missed a few more recently, I think mostly because I have become engrossed in writing postings here until it`s too late to take it! -Sometimes there was no obvious effect. -I have never noticed any bad results.

One further consideration re. reducing dosage initially, I wonder if being SPMS (secondary progressive MS) & thus one`s system having been worn down & so more compromised & also older bodies, (-aaggh! just 60!!!) necessitate a slower, gentler introduction to LDN? -This worked for me! (Actually I feel almost odd advocating such a cautious approach! -Impatiently jumping in the deep end has so frequently been my way............)

Having started on 4.5mg of LDN, I dropped progressively down to1.5mg: I have been gradually increasing my dosage again, I am now on 3mg, things are fine & I intend to try 4.5 mg again in about a couple of wks: (-after approx 1 month at 3mg.)

Best wishes to you all!...........

Gerald (approx.3.5 months LDN.)

Original Message -----

From: marciemjm@...

low dose naltrexone

Sent: Saturday, June 12, 2004 10:04 PM

Subject: Re: [low dose naltrexone] Re: I was taking too low of a dosage and I was not pr...

Sleep disturbances in the beginning are not uncommon. Seems like most experience this one. For the first 3 - 4 weeks, I slept very little, and would wake up at 3:00 AM wide awake. By 10:00 AM I would crash. After the 3 - 4 week period, this ended, and I sleep better than ever now. Sometimes 6 - 8 hours without getting up. This hadn't happened in nearly 5 years. It is different for everyone. I started on 3mg, then after 3 months went up to 4.5mg. I'm trying 6mg now and really believe that it is best for me. I was SO stiff to begin with that the stiffness isn't really an issue for me. Don't get me wrong, I wish it would go away, but none of the dosages made any difference in the stiffness. No worse or better. I'm on day 216 on LDN. Hang in there! (My opinion where trials are concerned...'they' want one dose for everyone, and that isn't even! a possibility. I don't think 'they' will accomodate the individuality of this issue. So, take charge of your own health!)) Marcie (PPMS) In a message dated 6/12/2004 2:39:19 PM Central Standard Time, hanneheidi4@... writes:

I don't understand what you mean( or dr. Bihari means).... Protected? Protecteds against what? I've been on LDN for 2 days (I know I'm NOT experienced at all) but my own intuition tells me to half my dose because I havent sleept in two days.. I fell unable to sleep.. So tonight I will try and take 1,5

[Guest guest]

Edith,

My opinion: We are the experts, and we are the only guinea pigs who can talk, so who better to try it on!!! I have NO hesitation whatsoever! Hang in there, and do whatever you feel comfortable doing!!

Marcie (PPMS)

In a message dated 6/13/2004 9:51:11 AM Central Standard Time, edith@... writes:

So here we are being our own doctors and guinea pigs. I'm not so sure this is the right thing to do.

Edith

[Guest guest]

Guinea pigs never had it so good! I am sooooooo glad that I read about LDN I still tell everyone who has an ear,I am sure my friends are sick of me talking about LDN but still almost daily I tell someone about this that needs it and later they thank me for it.

Reg.

-------Original Message-------

From: low dose naltrexone

Date: 06/13/04 13:32:16

low dose naltrexone

Subject: Re: [low dose naltrexone] Re: I was taking too low of a dosage and I was not pr...

Edith, My opinion: We are the experts, and we are the only guinea pigs who can talk, so who better to try it on!!! I have NO hesitation whatsoever! Hang in there, and do whatever you feel comfortable doing!! Marcie (PPMS) In a message dated 6/13/2004 9:51:11 AM Central Standard Time, edith@... writes:

So here we are being our own doctors and guinea pigs. I'm not so sure this is the right thing to do. Edith

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