I am so happy for all of you who are finding such good relief from LDN..:D For those of you who are not having such great results, I have to admit.....

I was not at all thrilled with LDN for about the first 6 mos. or so...I expected so much more..:( It wasn't untill I realized, I was not having any new symptoms and was having some relief of existing symptoms, that I knew the stuff was working..:)

So, take it from me you SPMSers and PPMSers, You will not regret sticking with it....Unless, of course you are allergic to naltrexone and/or it causes you pain.

You can take away all that I own, but do not touch my LDN..:D

:grouphug:

Ahhh Sally, you're so right -- LDN is amazing no matter what the "nay sayers" think. After reading these testimonials, how can so many "professionals" still say it's unproven and doesn't work?

I discovered how great it's working for me when my out of town pharmacy lost my pills somewhere between filling the script and delivering by UPS. It didn't dawn on me for awhile.....duh......why I was feeling so weak, depressed, fatigued and extra problems with bladder issues until I realized it had been ten days with no LDN. Two days after a quick call to the pharmacy I had a new batch and after the first night there was a change for the better. Of course being so advanced, I don't expect to jump out of this chair and run a marathon, but the improvements are truly noticeable plus on my last neuro visit, he said I seem to be stable and holding my own!!!!

Keep it up all you LDNers!!!!!!!

I go for my MRI this morning. Hope there's nothing new to report. Hopefully it's just a current lesion that's causing all the trouble and not a new one. I'll report back once I've gotten the results.

I'm up to the 4.5 mg dosage now. Although I haven't been on LDN too long I noticed a difference immediately, too. Unfortunately, I think I'm in the midst of a flareup. I had a sinus infection and took a round of antibiotics and then this flareup started. It's just dizziness and vision problems - the same kind I always have.

my fingers are crossed, Herekitty, lol, somehow on this board that sounds different than it does elsewhere,:rolleyes: :(,
but anyway, I hope that MRI shows nothing new.

I also hope you hurry up and get past the garbage you're going through right now.

Gotta getcha "healthier" so you can enjoy both the cooler weather down here and the benefits of your higher dose.

:hug:

Judy said:Marion said:

Quote:

knock some of those doctors off their pedestals, and force them to open their eyes to LDN’s possibilities

I was fortunate, my neuro already knew of and prescribed LDN, and it was his suggestion that I take it.
I was shocked!!

He seems to approach health care differently then most Dr.s I have dealt with though.

Complimentary & alternative medicine play an integral part of his practice.

He actually learned, and now uses, acupuncture...I don't know for whom or under what circumstances, but he has one day that is acupuncture day.

Interferon depression? His 1st rx of choice is not a drug, it is Omega 3s/EPA & DHA.

But he is also aware of possible problems with some supplements and the immune system so he is as cautious and attuned to their use as he is to one's use of actual meds.

Sorry, I got lost in the wonders of my doc and his staff, but they're the folks who made my LDN possible. I LOVE them!

Two steps forward, one step back.
 

Hopefully things are stable for you Kelly. :hug:

Going back to my original posting on this thread:

I left an infection too long last year, and I paid for it with a long flare which ultimately included infection after infection (of different sorts). My doc/neuro and I have talked about going on an antibiotic on a full time basis . . . but unfortunately I am allergic to the family of drugs that the one we would use falls in, and there are apparently no other good/safe choices. Just the other day my doc said "just make sure to treat an infection at the first sign" . . . but it's not like I have an infectionmeter and I am usually very unwell before I realize what's even going on. :Crazy 2:

Kelly, could they do a blood test to see if you have infection somewhere. Maybe that sinus infection just hasn't cleared up yet.

Cherie

I read recently that there are 10's of thousands of people on LDN now, but I don't know how true that is. When I first started fighting for it, about 4 yrs ago, there weren't that many doctors that would consider rxing it . . . and now most will if we put up a big enough stink.

I'm glad there are so many people that feel they are staying relatively stable over a LONG period of time, and that it doesn't usually have any side-effects. What more could we hope for at this point in time? . . . well except maybe a cure would be nice. :)

Cherie

So did my Neuro, but he still wouldn't prescribe LDN, so I fired him...LOL. I only see my PCP now.:)

Me too! He wanted to put me on Tysabri cuz he has an infusion clinic.

I did go to another neuro, but she got pregnant and cancelled my Oct. appt.

Not sure if I have a neuro or not, but the LDN Rx is thru my local PCP. (He's the only doc in my little town!)

Glad to hear everyone seems to be doing pretty good.

my next neuro appointment is on the 20th and i plan to saunter in his office and shock the **** outa him. last time i was there i was depending on my cane, my wife, the walls, the counters, the chairs, anything within arms reach to help balance myself. i dont think he had much faith in the ldn materials i took him. i think he was just trying to humor me and get the hair brained ideas out of the way quick.well it hasnt been that long since ive seen him and boy do i have a surprize in store

Be sure to let us know what he says, Flute. I hope he is pleasantly surprised..:)

Hi Flutemaker :Wave-Hello: and welcome to the NT's LDN thread.

I'm happy to hear LDN seems to be working so well for you. :)

I got LDN from my GP, and went on it just a few days before I switched neuro's. I was in pretty bad shape, and had been for two years already. My doc was only giving me month-to-month rx's at that point, and my neuro said I could stay on for 9 months, but then we'd have to re-evaluate my status,

When I returned for my annual, she was shocked at how well I was doing. I had reduced my EDSS by one point, and completely stopped having the back-to-back attacks that I had been getting every 3 months prior. She said "what is that stuff you are on??" My doc started rxing on an annual basis.

My neuro has been monitoring me for about 3 1/2 yrs now, and each time she has said there is no point in doing a MRI as I have remained neurologically stable. I did have a rough time with an infection last year, but I came out of it at the same EDSS anyway . . . and I am close to 18 yrs into this disease now (never used any meds along the way).

Even if all I get out of this is the last 3 1/2 yrs, I'll be happy with my choice. LDN gave me back my life . . . for as long as it lasts.

Cherie

Just dropped by to say howdy, hope all are doing well, no changes no bad changes either, have not felt great but not feeling horrid so I guess its all good


peace

Cherie and/or Sally.....I have a question for you. What is the optimal level of LDN to take? Are you getting the maximum benefits when you just take 3.0 or must you take 4.5 to obtain the maximum protection and benefits from it?

I have moved up to 4.5 and think I am tolerating it pretty well. I have noticed that my right knee is much stiffer and I have a harder time moving in the morning when I am on 4.5. I didn't notice any of this when I was at 3.0. Should I just "tough it out" and it will go away eventually? I want to take the dosage that I'll get the maximum benefit from so if this will pass I can wait it out. Also, I am sleeping much more than usual. Could possibly be this flare I'm in that's causing it....but I can get up at 6 AM, go back to bed at 8 AM and sleep until 11 AM....then be ready to lay back down at 3 PM and take a nap!! Let me just add that I don't sleep well during the night and I'm up and down several times.

I won't know until probably tomorrow what the results of my MRI are....I'm so hoping that there is no new activity and all this carp is just stemming from an old lesion deciding to act up.

Thanks!!

kelly i am pretty sure its based on each individual, 4.5 is suppose to be the max from what i read, and like you I did ok at higher dose but was doing better at the lower dose, listen to your body:hug:

Good, Frank.:) Are you on 3mg, now?

Kelly, You get the optimal benefit from 2 to 4.5mg....whichever is your dose. I was on 3mg for 3 yrs, before being able to go up to 4.5mg.

With LDN, more is not better. As a matter of fact, if you go over 5mg, for instance, it would be counterproductive, as your endorphins would be blocked for too long of a time and endorphins would not reproduce.

LarryLDN has been on LDN for over 5 years and he stayed at 3mg. 4.5mg was too much for him.

Go back to 3mg, where you are comfortabvle and don't worry about going up, until or if you are comfortable with it.

:hug::hug:

I agree with Sally, Kelly . . . EXCEPT as I understand, we must be on a minimum of 3.0mg. Maybe someone can ask Skip the next time they talk to him, if that has changed over the last few years. :confused:

I use 4.5mg because I can without causing any problems. Most men and small women (under 100 lbs) only use 3.0mg.

If you are going through other issues right now, Kelly, knock it down and try again when you are stable.

Cherie

Cherie, I believe that it reads that no benefit can be seen at less than 1.75mg. It's always been that way, unless it has recently changed.

3mg was Dr Bahari's original optimal dose but he changed that to 4.5mg, about 5 years ago. But, I believe, for those very sensitive to meds, 1.75-2mg would be ok, if they find that 3 is too much.

Okay, girls. I'm officially confused. :confused:


Quick! Somebody call Skip!

"The introductory dose is just 3 mg for the first month of treatment. It has been reported that those receiving this drug in the treatment of MS experience a range of benefits, including reduced spasm and fatigue, and improvements in bladder control, heat-tolerance, mobility, sleep, pain, tremor and others. After this period (in the absence of any introductory side effects), and for greater therapeutic response, the dose can be increased to the current maximum recommended dose of 4.5 mg per day, to be taken between 9 at night and 3 in the morning.

For those unable to tolerate even the 3 mg dose, lower doses of 1 or 2 mg are available. Such doses are intended to introduce the therapy more slowly, allowing more time for the necessary endorphin response to develop."

http://www.ldnresearchtrust.org/default.asp?page_id=77

"What dosage and frequency should my physician prescribe?

The usual adult dosage is 4.5mg taken once daily at night. Because of the rhythms of the body's production of master hormones, LDN is best taken between 9pm and 3am. Most patients take it at bedtime.

Notable exceptions:

People who have multiple sclerosis that has led to muscle spasms are advised to use only 3mg daily and to maintain that dosage.

For intial dosage of LDN in those patients who have Hashimoto’s thyroiditis with hypothyroidism and who are taking thyroid hormone replacement medication, please read Cautionary Warnings, below.

Rarely, the naltrexone may need to be purchased as a solution — in distilled water — with 1mg per ml dispensed with a 5ml medicine dropper. If LDN is used in a liquid form, it is important to keep it refrigerated.

The therapeutic dosage range for LDN is from 1.75mg to 4.5mg every night. Dosages below this range are likely to have no effect at all, and dosages above this range are likely to block endorphins for too long a period of time and interfere with its effectiveness."

http://www.lowdosenaltrexone.org/#Wh..._and_frequency

.... so, I guess there isn't a straight answer out there.:cool:

Cherie

Thanks, Cherie, this is exactly what I was trying to get across..:D

So, 3mg is a good theraputic dose for many, with no need to jump up to 4.5mg and 2mg can also be theraputic for a few very sensitive patients.

No confusion, Twink..:D It's what your body can tolerate. With LDN, more is not always better.:hug:

They haven't tested LDN for dosages, so I guess it's hard to know how low we can go.

What we do know is that 4.5mg is optimal, and 3.0mg is fine for those who can't tolerate more. They don't "think" going lower then 1.75mg is going to have ANY effect . . . so I would say that 1.75mg is still very much on the border line. No doubt it is better then nothing, but I don't think those people will experience the same protection (relapses and progression) as those of us who are at 3.0+mg.

... bearing in mind we are all supposed to be trying to get to 4.5mg, if possible . . . :cool:

Cherie

Sorry, Cherie, I don't agree with you on this..:p

Ok, but what part don't you agree with? :confused:

"What is the best dosage of LDN to begin treatment with?

For an adult who is not significantly below the normal weight range, the optimal dose of LDN is 4.5mg, taken each night at bedtime; i.e., between 9pm and 3am. One can begin at this dose level. If one were to develop persistent sleep disturbance (i.e., a sleep disturbance lasting longer than 10 to 14 days) after starting LDN, which occurs in less than 2% of users, then the dose may be decreased to 3mg or 2mg.

People who have multiple sclerosis that has led to muscle spasms are advised to begin treatment with just 3mg daily and to maintain that dosage"

http://www.lowdosenaltrexone.org/further_q_and_a.htm

All the links I've posted say most of us should be on 4.5mg.

All say that 3.0mg is sufficient if that's all a person can tolerate (due to side-effects).

One says 1.75mg to 4.5mg is therapeutic . . . but dosages below or above are not recommended.

Ultimately, we want to aim for 3.0mg - 4.5mg though . . .

Like I said though, they've not tested a lower dosage . . . so in fact maybe it would be sufficient. But, to quote Dr. Agrawal "If it ain't broke, don't fix it."

http://www.acceleratedcure.org:8080/node/1581

Cherie

The biggest part, with which I don't agree is, that we should all be trying to get to 4.5mg LDN. Not true...some of us never will. You'd be surprised how many are on 2mg LDN and doing very well.

We should all stay or, after trying the higher dose, go back to the dose (higher than 1.75mg) that is right for us.

When I could, finally, tollerate 4.5mg, I noticed absolutely no difference in efficacy. I stayed there because I could tollerate it but some never will.

So, to tell someone that unless they go to 4.5mg it's not working as well for you, is just wrong.

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?

in all the reading the other posts i forgot to ask how herekitty's MRI wentis yeh staying close to stable at least?

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".

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. :)

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 :Scratch-Head:. . . 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

I don't disagree with any of this, Cherie..:D

Hi, all you LDNers, out there...How in the he** are Ya? :)

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

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..:D)

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..:hug:

So....how's it going today?? Next.......

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! :D

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.

That is one of the perks, that I noticed, as well.

Keep up the good work, Marion..:hug: