Hey Sally. I know how it suppose to trick the body into saying "hey..i dont have enough so produce more" :)
Tell me why you don't believe it would work in the situation I described? Curious.

Spoke with the leader from MS group just now on phone. Regarding other issues but when we were hanging up she said well..I sure learned alot! :)
Taught her testosterone, esters, dermatomes (surprised she didnt know derms) ect. Job well done.

What Sally said is exactly how it works. It is not to keep you up, like a anti-fatigue medication. And it does not make endorphins at will.

Only when our body starts making endorphins on it's own, at night, it blocks them, then the body thinks it needs more, so when the blocking ends, we have many increased endorphins. At that time, most feel it starts helping with pain because of the endorphin rush and energy by morning.

It is not an upper pill, or energy booster to take during the day. Read the LDN website again Eddie, it might help. I re-read it often. I have a lot to learn myself. :)

I stopped taking it (wasnt religiously anway) because I couldnt sleep at the most important time of night and I actually lost some sensory when I couldnt sleep. I still have it and next time I try it will be preworkout because if its true exercise increases endorphines, someone explain why before you say no it won't work.

I am really surprised to hear this. You looked so hard to find a neuro that would prescribe it and then didn't even take it correctly or for the 6-12 months to see desired results???

Not that there is any guarantee that LDN would work for you....but just that you didn't try.

The research is to take the LDN at night between 9pm and 3am. Maybe someday someone will do a research on LDN and preworkout....but for now there is no research in that area.

Hi Eddie,

I'm gonna give this a try! We aren't taking LDN to suppress our endorphin production but to INCREASE it. We produce the most endorphins after 3:00 am. We take LDN before that time to decrease the production so that later, when our body naturally puts out more enodrphins, it will realize it is short and make a whole lot more.

When you exercise, you produce more endorphins, so it makes no sense to me to take LDN and put a damper on that. You're doing naturally what we're trying to do with LDN. I think that the exercise is a great complement to LDN when you take it at night.

If you take LDN on a hit and miss basis, you're probably not letting your body adjust to it's mechanism of action and that's most likely the reason for your sleep problems.

I hope you can figure out a way to make it work for you. I take mine when I go to bed so I'm already asleep before it kicks in anyway. Just ridding me of the heat intolerance made it invaluable to me. Everything else was just a perk.

C

The main reason why I didnt take it every night was because i couldnt sleep. Ive been keeping my testosterone level high and that will do it (sleeplessness). So therefore by waking up at 4am and twisting turning actually Hurt my E production (i think).

As far as studies go, I surely don't need one to try something :) Just makes me wonder why if blocking E at night causing the brain to say hey! I didnt make enough so make more!..WHY then wouldnt the brain do the SAME thing during a workout if it produces it for who knows what reason but it does and therefore should say hey! I need more! :)

I told Dr yesterday I don't think it's the magic bullet for me but..Happy Happy joy joy! he gave me what my last neuro dumped me for cause I asked for it every appt. I believe it will help me and been wanting to try it for almost a yr now. I just have to monitor my cd4+ cell level. Lowering it is a good thing..lowering it too much is a PML risk. Yes I'm on Ty and armed with info so going to roll with it. If the neuro that dumped me didnt put me on Ty I wouldve stayed on Copaxone and took a chemo drug that starts Na?...I forget. Worked on lady at MS group. Put her in total remission. 2 yrs is max though. Still working a couple yrs after. Back to ldn :)

Eddie, good luck with the Ty. I hope it works for you. I guess you know about the Ty Sticky on here for those that are on Tysabri. Aren't you starting Ampyra too soon? Best wishes. :grouphug:

The na is probably Navatrone, a cancer chemo drug. Kinda scarey side effects.:eek:

Good wishes with watever you try.:hug:

I'd give LDN another try. It caused sleeplessness for me, too, but I toughed it out and it went away. I'd definitely try it again before taking anything like Ty or Novatrone. :eek:

I tend to go to bed kinda early anyway and always wake up between 12-1 AM so I just take my LDN whenever I wake up. Sometimes it's closer to 2-3 AM but that's even better!

Ok, I'm going to call a doctor from one of the online lists to see if I can get some LDN.

Any suggestions on one to call?

There arent any in Nebraska that I can find, so I'm just going to close my eyes and put my finger on the monitor (if I can find it with my eyes closed) and see what name on the list I have my finger is closer to.

Hopefully it wont be too horribly expensive. I dont know if I'd be calling the ones that say they charge $500 for the first consult.

What do I say when I call?

I hope I can get a Rx and I really hope it works for me. (not expecting it to, but hoping!)

Erin you could call/email Dr Skip Lenz, the pharmacist in Florida who does a lot of compounding of LDN and ask what doctors in your area are prescribing it.

PM me if you have a problem. I have his site info and others.

My PCP prescribes it for me, I fax it to Dr Skip. My Neuro called my PCP and said it was okay for him to do so.

My regular doctor and my neuro both will NOT Rx it for me.

However, yesterday when I saw my regular doctor, he "suggested" that I look on the internet. Said to look and see if there are any trials, and then he said look around and see if someone can Rx it to me over the phone with a consult. Told me I'd have to send medical records to the Rx-ing doctors probably... (I already knew that, but let him tell me anyways)

So, he basically told me I could take it, I just cant get it from him.

I just have to pick a doctor off the lists of LDN prescribers that I've found on the internet, and hope they're not scam artists. One of the reasons I was hoping someone here could suggest someone.

I just feel so horrible this past couple of months that I'm getting a little desperate and a lot depressed that I'm about to be disabled. I feel a little worse almost every day it seems.

I think the depression is coming from the fact that the numbness and weakness has finally hit my arms and I cant really knit or crochet any more. (well, I can, but it's a lot more difficult than it was and isnt as pretty anymore)

My neck hurts really bad tonight and I'm scared that's the lesion at C4 and that it's about to ruin my life totally.

I really hope that LDN will help me feel at least a little bit better if I can get a Rx for it.

Called Skip's pharmacy. They only had the email addy to someone who I've already gotten information from.

I just went thru the list of doctors in that email. One was closed today. Another one I couldnt get thru to. Kept getting an "all circuits are busy" message.

Another number was no longer in service.

Finally got thru to a doctor in Houston, TX and they're going to email me a new patient form. I have to see what info they're asking for before I decide if I'm going to actually set up the phone consult with them. (bit worried about sending info to someone for this, afraid of getting identity stolen.)

Erin I got lucky having someone here suggest a Dr that prescribes it but even still, when I went there I was armed with select pages printed from LDN website, read them waiting so I could talk the talk, printed whatever else I found from users praising it posibly here. The best part - when I had long appt with my med Dr, he told me he gave it to someone that requested it for rhumitoid arthritis (doesnt think its working for her) so I was like darn! I couldve asked him! heh. However, it wasnt the magic bullet for me (or not yet anyway). I' refilled it and will give it another try one of these days but I'd like to know...

How many people here have great results using it and what else are you on??
Thanks.

btw..Erin and everyone else wanting it could sure use a list of people that take and love it.

No MS med in existance gives great results.:(

I am satisfied and even happy with LDN. Why? Because it helps to minimize all of my MS sx, seems to be slowing my disability progression and, unlike the poison DMDs, helps me to feel better, healthier and happier.

I have been on it since April, 2003 and The only other med I take every day is Prozac.
So, if you are looking for a myracle drug or cure, forget LDN and all other DMDs. There aren't any.

I'd hate to think where I'd be if I hadn't found LDN nearly two years ago. I still have MS symptoms, but I am much better than I was before I started LDN, and I am sure I'd be much worse off without it.

I know that because two times I had to come off of LDN before surgery, because I might have needed heavy-duty pain meds after the operation. During the time I was off LDN I was reminded daily of the improvement I enjoy with LDN. As a result, I opted to take no strong pain meds in favor of restarting my LDN.

And it's not just that I am feeling better. Knowing that I now have some stamina, over the past two years I have started my own Etsy shop, and I’ve grown leaps and bounds in my trade. I don’t feel quite so aimless, and I do associate my feeling better with LDN.

I'll give it another go since Ty i'snt stopping progression. So 12 at night is the soonest to take it? If i have to wake up at 2 or 4 to take it it'll harm me. Ive read where Prozac helped some with MS. Wonder if the combo is key. And 3mg is what yields results?

I think between ldn and ampyra i'm going to be too wired to sleep.

Eddie, I take 5 mg. around 11 at night. It took me awhile to titrate up to that amount -- 2-3 months.

I feel clarity of thought and more stamina taking it. I just ordered another 185 doses, and don't plan on stopping.

Skip Lenz, the pharmacist, told me he takes it prophylactically. He is sold on its benefits.

Best of luck to you, Eddie.

LDN has helped me too. Many improvements, even old residual damage is gone. Can the other drugs do that? I don't think so. No progression, and I was progressing prior to LDN. I am taking 3.0 mg at bedtime, with a glass of water. I wish I had a set bedtime but I don't, so I take it about 1/2 hours before shutting my baby pale greens. Lol

I may go to bed at 1, 2 or 3 am. Just take it before going to sleep, no later than 3 am is okay Skip said to me, but that is the time I told him I may go to bed if I nap during the day. I never asked about 4 or 5 am. But I think we make our endorphins around 3 am, but we are all different.

I don't take Prozac or any anti-D's. I never needed them. But I'm sure it won't hurt you if your body needs them. LDN lifts my mood a lot.

If life is harder on you, or you're missing, or low, on a chemical in the brain that's helps you avoid the high and low's of the day, or stressful situations, then anti-D's is the way to go.

Eddie, if you moods are steady, and you never feel that dark cloud over your head, or you can see the light at the end of the tunnel on a bad day, then maybe you do not need the chemical booster of anti-D's.

No two people are alike in this world, and the same with MS and other diseases. We try meds and pray they work for us.

I changed the time that I take my LDN from around midnight to around 3AM and I seem to be responding to it with more strength and feeling.:D

I didn't do it on purpose, at first. I fell asleep early and didn't awaken until 3AM. My body liked the change, so I continued it.

I'm thinking that there is probably a perfect time for each of us, between 10PM and 4AM, and my time is 3AM.:cool: It was working fine at midnight....just a bit better at around 3AM!!

I guess my endorphins are doing their thing and LDN is doing it's thing at about that time, in my body.:)

Good Article on LDN & Alpha Lipoic Acid (ALA)
 

"Dr. Berkson uses ALA along with low dose naltrexone (LDN) for the reversal of a number of more serious health conditions such as:

* Lupus
* Rheumatoid arthritis
* Dermatomyositis (an inflammatory muscle disease)
* Autoimmune diseases

Most of his patients normalize in about one month on this combination of ALA and LDN."


http://articles.mercola.com/sites/ar...aspx?aid=CD945

Thanks Kitty for the article. I had a hard time viewing it. They want you to sign up to read. I read it bit by bit, over the top of the advertisement.:)

There was a reason I can't take ALA, but I don't recall at this moment. I will have to look it up. Maybe allergy? Hmm I have many food allergies.

I have started taking a different multi-vitamin specific to women 50 and over (even tho I'm not quite there yet!). Nature's Code is the brand and it's a packet of 6 different vitamins. I'm also taking Alpha Lipoic Acid (600 mg 1X daily) and Turmeric (400 mg 1 X daily). This along with my diet changes have made a huge difference in how I feel. It's not been easy and has taken alot of will power but I can really see and feel the difference eliminating sugar and high fructose corn syrup from my diet has made. This, along with my LDN, seems to be the magic bullet for me.

I do believe that even if I didn't have the MS sx that I do I'd continue to take LDN just for it's positive cancer fighting qualities and the overall health benefits it has.

Just the other day I cheated and ate a piece of pizza (DS ordered a Papa John's pizza and it smelled so good!). It tasted good but it was so not worth the indigestion and bloated feeling I had for hours afterwards. I sometimes miss the junk I used to eat but then I remember how I felt after eating that pizza and the desire soon fades! :rolleyes:

It's been amazing seeing how some simple changes in my lifestyle can make such a big difference. I believe LDN plays the biggest part but the dietary changes and improvements can only enhance what LDN already does for me. :)

Alright, Kelly, good on ya (as they say):)

I'll take care of doing all of the sugar and spice eating for you. It's too late to save me.:D Would God have created the sugar cane, if it was bad for us? Except Diabetics, of course.

Keep feeling good, Kell..:hug:

Don't get me wrong.......it's hard to eliminate the sugar and sugar products.....but they were upsetting my stomach so badly. I was taking Prevacid and Tums and it wasn't helping. I thought I had an ulcer or something. As soon as I eliminated the sugar products I got better almost overnight. Then I noticed the benefits of it other than making my tummy feel better. Weight loss and better skin. And, a reduction in MS sx. The vitamins help, too.

I cave every now and then and have a treat. But I can't enjoy it because it makes me feel so bad afterwards. What I'm really craving right now is a cheeseburger and fries from Five Guys. It's got to be the best cheeseburger ever made. :o My Boca Burger will have to do for now.

How's the new time working for you, Sal? I still take mine anywhere between 1 AM and 3 AM and it seems to work well. I hope it's working for you, too!

I'm back to around 1AM too, Kell..:)

Hi sorry to be missing again. Still working out my Thyroid problems. I am to see an ENT surgeon to test for airway constriction on Wed. The largest nodule is huge and presses on my Trachea (windpipe).

TG, my biopsy of that largest nodule was benign. The two new little ones that they worry about, were two small to find with the FNA Ultrasound to biopsy. They made a few passes with the needle but got nothing but me sore. Lol

As for the LDN, I take my LDN any time between 1 am to 3 am. I shoot for the 1 am target, but I shower, I read and have my coffee and a yogurt. The time goes by so fast.

I kick myself for being up so late. I have a very early ENT appointment, I may as well just stay up.:eek:

Kelly, your diet sounds good. Too much sugar and corn syrup in our diet is not good. Like meat and other foods, everything in moderation is the key. If you are trying to lose weight then be good and do your best to avoid them.

I am told I am thin, but at 5' 6", 135 lbs, I don't think so. The biopsy doc said I had a skinny neck, so the nodule could be pressing inward, because it only shows a little bit on the outside.

When I worked I wore size 12 or14, now I wear size 8. I used to eat junk with my coffee most of the day to try to stay awake.

Sorry to ramble again and go OT.

I'm so relieved that the nodule was benign.:)...but, so sorry you are still plagued by the problem.:(

Yes, 1AM seems to be the best time for most of us.?.?.

I think we will all feel better when this heat subsides.

:hug:

So glad your biopsy was benign, Lady. It's so stressful to wait and worry.

I usually wake up sometime between 12:30 AM and 2 AM - depending on which cat decides they've waited long enough on me! :rolleyes: I try to wait till just before I go back to bed to take my LDN.....waiting as late as I can. Sometimes I'm just too sleepy and take it at 1 AM. Sometimes I can hold out till closer to 3 AM. I can't really tell a big difference regardless of whether I take it early or later.

I have noticed that my right hand is getting more "feeling" back in it, though. It's still numb for the most part but I have more sensation in it and can tell when I'm holding something whereas before I couldn't tell if I was holding anything at all. :)

Good for you, Kelly.:hug: .I have noticed the same thing in my left hand and foot....a little better feeling and movement. Of course it's the LDN..;)

:cool: Of course it is.

Really, I do think it is the LDN working it's magic. I never expect to be "cured" but I will take the sx relief anytime! ;)

I'm glad you're better, too, Sal. With your better left side and my better right side we almost make a fairly workable complete person! :D

My last neuro dumped me for being persistant. He's too old should retire.
Went to another a friend suggested and I still want to lay him out. SO rude he was.
The one I have now I love thanks to this site. Thankyou.

Endorphins
 

If LDN works because it tricks the brain to increase endorphin production, what about a drug that increases endorphins? Anxiety meds?

Nobody knows, exactly, why LDN works. It just does. :)

If it were just a matter of raised endorphines, then vigorous exercise would work. But it doesn't.

Eddie, you are on many new meds and that's great, if they're all working, but how do you know what's helping what? I'd be a bit confused too.

Hang in there, we are with you.:hug:

Since you mentioned it, I always feel better (will have to pay more attention to numbness) after a good fast breathing aerobic workout. Anyone else? Asked neuro if there's a measurement for endorphines and he said not really. It's experimental at best.

They have done comparisons, I have been told (don't have a link), that show Endorphines count is low in PwMS.

Reporting in....I don't know if it's the LDN or the Prozac, but I have used my last weak little nerve, in the past week or two, with Scooter problems and the Dreaded Repairmen. :cool::eek::mad:. AND.....I've survived to tell about it, without a flare. I'm not saying if the repairmen did. :D

I think I had a little of God's help too.:hug:

So, how are you all doing? Any good LDN stories?

Check in...:grouphug: