I take mine around midnight each night, usually make it to bed by 12:30.

C

Most days I struggle to stay awake until past nine to take the pill and go to bed. G'night, all.

9 pm on the buttonfor me. i have an alarm on my phone set for it.

I take it at either 12:30 am, or 1:30 am, or even 2:30 am, then go to bed. I open the capsules and get a direct hit. If I took the LDN in capsule form, as it comes to me, I think I would take it around 11 pm or 12 am. They get stuck, even with food and water to push it down after I take it. So I open them.

I should probably get the liquid form but I have more refills on this script and don't want to go to any more doctors if I don't have to. Did I say I hate doctors? :D

Skip said to me, even up to 3 am is okay, if that's when I go to bed.:)

I wonder when people take their LDN that work the night shift, and sleep in the day. Does it work the same if taken during the day? :confused:

1 year LDN anniversary
 

Well, folks, I've been popping 4.5 mg. of LDN for a year now.

But I don't know if its slowed progression or not. *sigh

A year ago my left hand was pretty numb (can still use it to type). Today my right hand is feeling much the same as the left. And my lips and front teeth are fairly numb and tingly. And my feet are number than they used to be.

Wondering if I should go back on a DMD (took Copax for 9 months). Think I'll make an appt for an MRI first. Dumb disease anyway. :mad: Wish there were some clear and obvious answers!

I'm sorry Twinks..:( LDN is not a cure, but I don't feel as if I've progressed, even though I still have symptoms that come and go and some that have stayed.

The truth is...I just feel better and stronger while on LDN. My DD, who scoffed at it, even though she used it, is now a believer. She had stopped for about a week, thinking it wasn't doing anything and had a relapse.

I'm not going to tell you what to do. You do whatever you feel is right for you, Girl and whatever that is, we will support you.:grouphug:

You could add a DMD!!

Hey TT,

So has your right hand/mouth and feet gotten progressively worse over this year, or is it just recently bothering you? Are those NEW symptoms for you?

Have you been checked for any kind of infection? I had a relapse while on LDN that lasted about 9 months, but I found out later that it was due to an untreated infection in my tooth under my cap. Soon as I had it removed, the relapse let up ... although I was left with some numbness/damage from that one.

Do you have spinal lesions that you are aware of?

If you have the option to take Copaxone too, why not do that? Double protection is a good thing, right?

Cherie

Good news!!

I had intended to start LDN ASAP in June when I was dx'ed but let some other factors get the better of me.

3 weeks ago I had an appointment with Dr. Bihari (yep, the founder of LDN therapy) which got cancelled indefinitely.

After what seems like ages of waiting I got an appointment with another phone prescriber and my script has finally been called in!!!!

I had a yucky day yesterday and today my numbness is a little worse so this is the best thing that could have happened to me today.

The physician I talked to said that in 8 years of prescribing LDN, the vast majority of patients have NO further relapses. A small number have occasional small relapses that they report as being very mild. It kills me that this drug is not more well known, researched, and promoted.

I still have my untouched box of Copaxone in my fridge, so I'll have to think long and hard about what to do about that in the coming months. For now I will sit back and see what LDN can do.

Good luck! I'm so excited for you.

I'm coming up on my 1 year anniversary with LDN (and nothing else) and couldn't be more thrilled! I started taking it on 8/25/08 and have never looked back. I agree with you......it should be more widely publicized. Just proves that a treatment doesn't have to be ridiculously expensive or have painful side effects to work well. :)

WooHoo PL!!!!! Keep us Posted,

I think Dr Bihari is just getting too old to take on new patients...JMO,

disappointed but not stopped
 

Took my mum to my GP yesterday who said that she didn't feel comfortable prescribing a drug (LDN) that my mum's own neurologist wouldn't prescribe. This makes sense, and maybe I shouldn't have told my GP that Dr. T wouldn't prescribe it, but I gotta be above board on all of this stuff. Then I asked my GP if my mum could get a referral to a neurologist that I understand prescribes LDN.

After this appointment, I immediately dragged my mum over to see this Dr. D yesterday, as I had an appointment myself, and my mum's referral to Dr. D was faxed-in while we were in the examining room. Good timing.

Dr. D will NOT prescribe LDN for my mum though.... Frustrating, yes, BUT she did say that she'd "advise" the GP on HOW to prescribe LDN. Dr. D also added that of the 50 patients she has put on LDN over the past few years, only ONE person has stayed on the drug. Hmmmm.... Based on what I'm reading here, I find this statistic rather confusing.

So, yeah, this circuitous route might take a bit longer, but we are making some headway. Slow headway, yes, but headway nonetheless.

Will let you know what happens if/when my mum starts the LDN.

One last thing: any advice on liquid LDN vs. pill form?

Thanks -- and take care

TL

thanks!

Yeah, Sally, I hope everything is okay with him, I was concerned when they said that he'd have to call off all appointments indefinitely. I was eager to hear from "the man" about LDN and ask him all the questions I had, but the main issue is that I 've got it on the way.

Dr. Bihari
 

Hello

Where is "the man" located?
Maybe I should take my mum to see him, if and when he returns to his practice....

Thanks

TL

New York City.

the MAN
 

oh dear...that's a bit far from Vancouver....

Thanks for letting me know, though.

TL

Hi TL and welcome!

I hope you get LDN for your Mum. Doctors say all sorts of things to try to get you to use other meds, but if you are persistent you will get the medication for your Mum to try. Good Luck to you both.:)

Hi PL,
Good news indeed.:)
I am glad you got the script called in and will be starting LDN soon. What dosage are you starting on? Let us know how you feel.

I noticed more energy at first and then I felt better and better and didn't notice it until I looked back, to where I was before trying LDN. I could see so many of my problems had gone away. It is subtle at first, but greater in the long run.

Kitty, Happy one year Anniversary on LDN. :hug: Good for you girl!


.

Cherie, the progression (of numbness) has been slow and steady for the past year. I don't think I have an infection, but how do you know for sure? Do they draw a blood sample or what?

When I got dxd in 2007, the only lesion was a marble-sized one on my cervical spine.

I just don't know about starting up Copaxone or any of the DMDs. I lack confidence in their ability to actually halt/slow progression. I just wish there were more clear answers.

I was all ready to make an appt. with a neuro for an MRI, then I had a conversation with an MSer who said she hadn't had one in 30 years! :eek: So I don't know if I really need one. So confewzed. :confused:

Hi Twink,

That is the problem, you don't even know if you would be worse if you stopped the LDN. It is a crapola shoot no matter what. The DMD's don't promise stopping progression or disability, just relapses mostly.

True relapse can cause more disability, but then MS is always active in our bodies. It may not be inflamed or attacking , but it is there hiding out all the time.

They are doing some studies now on a different "C". I think it has less site reactions, like maybe 1/2 the filler dose, but same main drug. It should end in November I think.

If it works better, than at least if you add it to the LDN, and you won't have those itchy bumps or site pain.

They changed something, and now maybe it is going to be changed back with all the complaints. It was 7 days allowed out at room temperature, then they changed something, and all of a sudden it is allowed at room temperature for 30 days. Hmm

Maybe that's a thought for you Twink. I hope you feel better. Is the heat getting to you?

Hi: I have a question that I am sure someone will be able to
answer.

Yesterday I went to see the Neuro (reg. appt.) I had his NP
instead of him.

I told her I quit Rebif and why. Then asked her about putting
me on LDN. She said she would have to ask the dr. about it. That's when
I said I have talked to him and he said "Noo".

She said she would talk to him and tell him what has happened since
i took Rebif and that I want to try and insisted on LDN

She came back and said he finally said YES he will prescribe it since
I am pushing and don't really understand that it will do nothing for me.

The problem now seems she said "that it only comes in 50mg and it
is going to be hard to find a Pharmacists to decrease it to the mgs. that
I should be taking. She will check with the hospital pharmacy and see if
they are willing to make the change."

Is she just giving me a lot of BS that it is hard to find a pharmacy to
fill the scrip? I haven't heard from her yet. Maybe this is still the drs. way
of me not using LDN.

SalPal i know you are very informed about LDN, I hope you or someone
has an answer.

Jappy :confused::confused:

Jappy, have your Doc or NP fax the script to Skips ( I think I gave you their fax no, and then you call them and set up a paymnt/mail schedule with Skips.

Tell your Neuro that Skips uses pure naltrexone powder with a filler and can make up any mg amt you need. I suggest you start with 3mg and see how that goes. I was on 3 for a long while before upping mine to 4.5 mg

Some peeps who are very med sensitive sometimes start with 1.5 mg for a month and then go to 3mg. Skip can split it into 1.5 mg doseages, if that's what you want to do.

Good Luck and much love..:hug:

Good luck, Jappy! I'm so excited for you. I use Skip's and they're wonderful. You'll have no problems with them.

I started out with 1.5 mg. and only took that dosage for a week before I upped it to 3.0 mg. I'm med sensitive so I've stayed at the 3.0 mg dose and it works for me. I'll have been on it a year on 8/25. It's a blessing.

Let us know how it goes. :)

my long over due update:

not sure when the last time i posted was but i know it was a while ago..
LDN seems to still be keeping my MS in check for now..
this is the longest i have gone without having a flare or needing IVSM.
now and then some of my old Sx will kick up for a few min or a day but as far as i can tell no new Sx..

i have been a little bummed out this summer.. not depressed but i don't think that has to do with the LDN.. i think it has to do with the fact we have had nothing but rain and colder weather this summer and very little sun.. which always bums me out..

Good to hear from you, PunkDizzle! I've wondered how you were doing. Hey, if you want sun and hot weather....just come to GA. We've got plenty of it! :rolleyes:

Glad to hear you've been stable with your MS. LDN has been good for me, too. :)

FINALLY all is a go ahead.

Found a pharmacy 15 minutes from my house that will do the rx

The dr. faxed the rx and they are in the process of compounding it
to the order.

I will pick it up tomorrow. :trampoline:

Jappy :)

I'm so excited for you!!! Don't forget to give us updates every now and then to let us know how you're doing on LDN! :D

Great! Good for you for insisting on it, I don't think I'd have the guts to do that with a doc who had already said no. I just chickened out from pushing my neuro and found a different doc for my LDN rx.

I just got mine today so we'll see how the first day goes. The doctor ordered a large amount of 1.5 mg pills so I can start with that then go up to 3 then 4.5 over 9 weeks.

LOL, sorry, I meant Dr. Bihari, he is in New York, but he does phone consults. I don't know if he's back to work yet or not. The appts are really expensive ($450) but he is the expert, and you get as much time as you need to discuss with him, if that is important to you. There is another physician who does phone consults for cheaper. PM me if you want info. ;)

Jappy, yeaaaaaaaaa!!!! Make sure your chemist uses a fast release filler.

:hug:

A fast release filler? Whuh? I get mine from Skip's -- is that what he uses?

Yeppers!!!

I picked up my rx today.

Yes it has a fast release filler.

It says to take one before bed. Is that the way everyone
takes it . Or does someone know better than the dr. when it is best to
take from experience.

I read all the information on the paper they give you with every
rx to tell you the good, the bad, and ugly of the drug.

It has some scary parts of how it can cause certain things. I
am confused about one thing, the drs. know that I take pain meds and
it said on the paper you should not take the drug if you are are on any
narcotic. Pain Meds, anxiety med, balance med, I haven't taken the
anti depress that he gave me. I am on enough junk.

SICK, SICK, SICK, OF MEDS.


JAPPY :eek:

I find it best to take at about midnight or before, if I go to bed earlier.

There is no danger in taking narco drugs with LDN....only that your narchotic won't work as well, since naltrexone, at high doses, is a narc antagonist.

WooHoo...Good luck. :hug::hug:

Sally, since we don't take high doses of LDN, we can take a strong pain med, right?

The reason I ask is because I am to have a biopsy of my Thyroid gland. They stick one one those yucky big needles a few times into the neck, and then into the Thyroid gland. They give you a couple of shots to numb the area (I had this done in 2005) and more for the inside.

Then you walk out with a pain med script. I wonder if I should stop the LDN the night before? Or not take it the night of the day-surgery? I really don't want to feel this needle go in and pull out of few pieces of the gland and not have the numb feeling or have pain after. (sigh)

What is your take on this? Or anyone else?

Did anyone have minor surgery while on LDN? I had a lump on my leg cut out, last month, which was a small growth. The numbing needles worked, but for a very short while. My DH had one the same time as I did, and he felt numb all day.

It isn't a biggy I know, after jabbing needles into myself for the DMD's all the prior years, but I just wanted someone's opinion on this. I don't think the doctor doing this will have that information.

Thanks in advance for any words or answers. :hug:

I had a horrible night last night. I was having withdrawal symptoms.

they were awful. Called the pharmasit this morning she said that the LDN
seems to be acting towards the Tramadol that I take for the pain for
fibro. To give it a try a few more times and if I can cut down on the
tramadol that would be good.


Here I was all ready to start a new day with some great news and leave
it to me it always goes the opposite. Now back to sleep I need my rest.


Jappy :(

((((Jappy))))....What dose LDN? Is Tramadol a Narcotic?

Hi Jappy,
Is Tramadol the only pain medication you are taking? My Neuro said that one (Ultram) is the only one I will not benefit from, taking with LDN. I looked at Dr. Bihari's website and it states the same thing.

Personally, I found the Ultram (Tramadol) lost it's usefulness years ago for me. I used it for back pain before and after back surgery. My now Neuro says don't take Ultram, it has warnings on it with the FDA. I haven't checked that out, but will immediately after I post this.

LDN Q & A info:

Can LDN be taken with other medications such as tranquilizers or chemotherapy? How about interactions with alcohol or tobacco?

LDN can be taken along with any other medication or substance, so long as it is not narcotic-containing. Naltrexone is a pure opioid antagonist and it will block the action of narcotics.

Some examples of narcotic-containing drugs are Ultram, (ULTRAM® =Tramadol ) morphine, Percocet, Duragesic patch and any codeine-containing medication.

How Does It Work?

LDN is another one of those “no one really knows how it works” drugs for MS. One theory is that it increases the body’s sensitivity to its own endorphins, or even do something that helps the body make more endorphins (the feel-good hormones). There is some evidence that endorphins reduce inflammation, as well as lessen negative sensations of pain, fatigue and depression.

Another theory suggests that LDN somehow reduces the production of free radicals, almost acting like an antioxidant.

My Neuro also said this:

Our body produces natural opioids (endorphins) as part of its survival
response to danger and injury. Because the medications of this class (LDN) work in the same way by increasing endorphins, they work very well in blocking pain

I have found that the LDN does indeed block many of my pain and sensory symptoms. I looked this up because I wanted to know about the pain medication I will have for my biopsy.

IMO, FWIW, You probably will have some withdrawal from the Ultram (Tramadol). Maybe 50% to 80% effective. Can you switch from the Tramadol to something else? Or wait out the withdrawal? Or even start on 1.50 of LDN for now?

The LDN should give you pain relief, but you just started on it. It may take a a week or two until you can get up to the 3.0 mg and be on that for two weeks or so, to benefit from the LDN's natural pain reliever effects.

What type of pain were you using the Tramadol for? - if you don't mind me asking?

I haven't needed anything but Aspirin for sickness or headache since on LDN. I hope it works the same for you. It may take time. :hug:


PS: While typing this.. I just got a call from the doctor doing my Biopsy 9-1. No medication will be shot into the skin, and no pain medication will be used by this doctor before or after.

He said it causes swelling of the tissue. He said I won't feel a thing. This is a different doctor than last time. No Asprin prior he said, LDN is okay. Yippee! :)

Thanks, Lady, good advice....I didn't know that Ultram was Tramadol!!

.3mg LDN---I found out on Monday when I went to drs. that
tramadol is a narcotic. I was always told by me NJ dr. that it was not.
Now I told the opposite which I believe is right.


JAPPY

Thanks Lady for all this advice. I have said time and again come here
and you will get an answer.

Yes I did know that Tramadol was Ultram, my dr. in NJ he was my
Reumo dr. and he prescribed it to me and new all about my other conditions
and said not to worry about it.

Besides the ms I have fibro and bad, with osterarth. mybone density
has showed I have the signs of osterperosis in its early stage. I am on big
mess.

I am going to take the LDN tonight I plan on fighting this through. I will
try and use something over the counter for the pain and stay away from
the tramadol, If I can, pray that I will make it.


Jappy :hug:

Ultram
http://www.fda.gov/downloads/Drugs/G.../UCM153130.pdf