after reading some of these posts i started to wonder a bit more about what drugs would interact with the LDN about.com had a link to another page, drugs.com, where you can enter all the meds youre onand get the known potential interactions.i mean everything youre on.your RX med, OTC, herbal stuff all of it.for example... my check came back with 899 other meds that 'may' interact with naltrexone.tramodol had 1189 granted,this is with naltrexone taken at the normal dose of 50mg or more.but forewarned is forearmed.

Hi everyone

Going through the withdrawls of the tramadol was just
absolutly horrible.
I haven't had a nights sleep since last thursday night.
The worse is over and am going to make it.

You put your trust in drs. here I had on wed. at my
visit one dr. giving a scrip for LDN and the other for the TRAMADOL

No explanations that this is not a good pair to meet.

Well I found out the hard way, at one time there I just wanted to
dye.
The good news I feel a lot stronger today. Will keep on
fighting. The best news is the fingers I am using to type this note to
you are working great. No pain, numbness, sharp tingle. It has disappeared
since taking LDN even though there was other meds in my body to get rid
of..

To me this is the happiest day for me I can use all 10 fingers
I am still very tired from lack of sleep and am going to try to lay down
and get some rest.


please all say a prayerfor me THANK YOU!!!!!


Jappy :grouphug::grouphug:

I'm so sorry you've had such a hard time, Jappy. I'm happy you're sticking with it and giving LDN a chance. I think you'll be glad you did. Hang in there! :)

Thanks, Flute and WOOHOO, Jappy...it sounds like LDN is doing it's job. Sorry about the withdrawal pain...that's awful. Prayers are coming to you..:hug:

Jappy, you did it. Whooo-hoooo :hug:

Sending prayers your way for the LDN to work for you more with each passing day. Withdrawals are not fun, but sometimes a necessary evil.

Glad that your hands and fingers are getting a positive response to the LDN.:)

We are your cheering team.:grouphug:

I finally slept last night. After this past week I feel like and old
washed out washcloth.

Seriously now, I called the dr again, his asst. called and we went over
everything that has been happening. She is supposed to talk to him and
call me back.

I am serious this girl did not know what I was talking about with the
LDN and its fighting the narcotic that is in my body.:confused:

She said she was writing everything down and will get back to me later.

I was asking what kind of none narcotic pain med there is, because my
body is now playing FOOTBALL WITH IT!!

The fibro is acting up. But one thing that I am still very happy about
is that I am still able to use the three fingers on my right hand still very
good.

LDN IS STILL WORKING AND GETTING ALL OF THE
OTHER ARTIFICAL JUNK IN MY BODY OUT GIVEN BY THE Hmmmm you know
who. We don't need a Med. Degree, but we know more.

Thanks to all my NT friends You are the greatest

Jappy :grouphug::grouphug:

LDN After one year:
 

It was just about a year ago that I began to take LDN. This time last year, I always carried my power chair in my handicap van. I always used the chair away from home, except for the rare occasion when I had been where I was going before, and I knew the walker would be a better choice.

This year? What a change! The power chair has been in the garage since some time last winter. When I worry that the battery will go bad if I don’t charge and discharge it, I smile and count myself lucky to have such a worry.

I am proud of the fact that I have enough common sense to know that if I need the walker, I NEED THE WALKER. I reserve the right to have my limitations show. But I am also rarely in need of the walker.

At least two times (three?) in the last year I have interrupted my use of LDN. The results were awful. It is easy to forget how bad I feel without LDN, but the reminder of the facts are only a missed-dose or two away.

Lately I’ve slacked off a bit in my usual routine of exercise and eating right. That’s OK, though. Fall is a lovely time to get caught up in that sort of thing again.

I am much better off than I was a year ago. I wonder what year two will bring.

Jappy, That's good news. :) Maybe Aleve or one of those types of pain relievers can help you. Something OTC.

Marion, Good for you. I am glad to hear that you are better off than you were a year ago because of LDN. I am over 8 months on LDN now, and much better off too. So many improvements it's like a miracle.

I hope year two brings you even more benefits. :hug:

Jappy, you don't want to be taking conflicting meds, but some people do go through initial side-effects from LDN too. When I tried to go up to 4.5mg the first time, my spasticity came back. I dropped back down, and tried again in about a month ... and that time had no problems.

Cherie

Good Morning



I am so happy to say that last night I slept with minimal pain.

Woke up this morning and sat at the side of the bed and realized
I didn't have the horrible pain I usually wake up with.

I started crying, LDN is working. got rid of all the other
meds in the body. It got them out or under control whatever.

Believe it or not, like I said early in the week I have use of my right
fingers again, this morning I gave myself a "Haircut" I used to be one of
those (never went to beautican school) I was taught by a neighbor years
ago (who was a licensed beautican). I did what they call the
"Funk Style"
My beautican in NJ always wanted to do this to me and I wouldn't
Today I just felt crazy.

Sorry about the long note, I am just so happy that I am wired up, I
just want to talk, talk, talk,


Thanks for the prayers and well wishes everyone!

Jappy :grouphug::grouphug:

((((((((((((Joyce))))))))))))):)

Great news, Jappy!!

The thing I had the hardest time with at first is pacing myself. I remember the first time I said "sure :)" to my daughter about taking her to the park ... and that was after 2 yrs of basically doing NOTHING except working.

Going to the park is not a big deal, but the next day I did pay for it a little. I really had to work up my endurance/stamina, and PACE myself along the way, or I would end up feeling bad and thinking LDN wasn't working. After about 6 - 12 months, I would wake up every day trusting that I was going to be ok that day, and that anything I did was going to tire me for a day or more after. BUT AT LEAST I COULD DO THINGS AGAIN!! :D

Slow and steady wins the race ...

Cherie

That's it Lady "Slow and Easy" do what you can and
when you can't, not to get upset (tomorrow is another day)

Right now I am in the mood to take a nap and that is what
I am going to do.

Jappy :hug:

(((((((((((sally)))))))))))

:):)

Check-in time:

How is everyone doing? It has been over a week since this thread saw any activity. Are we all doing so well we don't have to talk about it or what?;)

I am still doing very well on LDN. I thought I was going to have a relapse, felt a little off for a week or so. I think it is mind over matter with me. I am having a Thyroid biopsy on Tuesday. Getting nervous that's all. I'll be glad when it's over and done.:)

Anyone else have an update?


.

I've been doing very well and summer is not my best season. I asked my husband to turn the air conditioning off in the car the other day - he was still complaining that he was hot. That never happens. I'm usually the one responsible for freezing him.

I've never been a morning person at the best of times but I had a couple of days last week that I woke up NOT tired. Can't remember the last time that happened. Unless I really overdo it I'm not bothered by fatigue but I usually feel slightly tired in spite of a decent night's sleep.

I'm finding that I'm able to get more "extra's" crammed into my day without paying the price later.

I'm been taking 3 mg of LDN (since June 15) and was planning to increase that, but if I'm doing so well, I'm thinking, why change what's working? Any thoughts on that would be appreciated. I've had MS for 10 years and although I have some mild residual symptoms, I haven't progressed. My two flares were six years apart and the last one was over three years ago.

Ironically, had I been taking the DMD that was offered nearly nine years ago, it would have been given all the credit.

C

Lady, Congrats on doing so well.:) Good luck with the Thyroid Biopsy..Ihope it's benign..:hug:

Carol..Grrrrrreat!!! Yes, stay at the 3mg for as long as you are doing so well. I was on 3mg for 2 years and only then, could I handle 4.5mg.:hug:

I am still doing well. thanks for asking.:)

Other than seasonal allergies I'm doing great!

For the first time since I've been on LDN I forgot to take my pill the other night. Didn't realize it till the next morning when I was getting my vitamins and thyroid med out of my pill dispenser. :eek: I almost panicked!! All day I waited and watched for signs of spasms or spasticity but I had none! :) I didn't want to mess up my schedule by taking it that morning so I just waited and took my normal dosage that night. I'll never forget it again! :o

I've often been tempted to skip it for a few days just to see how I'd feel but I'm too chicken.....and I'm afraid I may set off a relapse. It's just not worth it!

I've missed one day a few times and didn't notice any difference in my heat tolerance, which is my main area of improvement. I read somewhere recently that it's a good idea to skip a day now and again so the LDN doesn't build up in your system. That makes sense in a way, but when you only take such a small amount once in 24 hours, would it be able to build up?

C

That's an old method used by a Doc in the UK, Carol. Dr Bahari's advise is not to do it.

I am happy to say that since I've been on 3mg. I have noticed that
my energy has greatly improved.

Also which has shocked me is that I do not have to take much or any
pain meds. The fibro has also been effected by the LDN.

I did read, where they are trying it with people that are afflicted with
Fibro and it seems to be helping alot of people. The pain is still there it is just
so mild that I can handle it. If I have lived this long with the horrible pain,pain this now is great for me. That's when I was on Tramadol (a narc)
now I take Aleve if I need something. Big change!!!!

I still take Neurontin for the ms nerve pain when needed. The doc wanted
me to take it whether I needed it or not to build up in my system. I just
won't do it. Hope maybe some day Drug Free. I know that is a big dream
that may never happen, but it does help to DREAM

Jappy :hug:

Thanks, Jappy. Glad to hear your pain has diminished...Endorphins are Nature's pain killers, ya know..:hug:

Great news Jappy. :hug: I felt the same way, less to no pain on normal days with the LDN. I am almost drug free too. Other than the LDN, Klonopin and the new Thyroid med.

I had minor surgery yesterday and got through the pain afterward, with no pain med other than Tylenol. I usually use Aspirin but bleeding was an issue after the Thyroid Biopsy, so Aspirin was not allowed.

I won't get the results for a while yet. Minimum 7 days. But the LDN last night let me sleep without pain because Tylenol is not strong enough for me at night, IMO. I can't use Aleve or Advil, wish I could. It hurts my tummy(another auto-immune disease I have there).

Tylenol helped, with an ice pack for the swelling, for a few hours during the day, until bedtime and LDN.:)

I was telling Twink about my minor surgery.. She is so sweet.:)


Carol and Kitty that's wonderful news for you two, too. :hug:

Kitty which Thyroid med do you take? Can you take yours with food? What strength? Is it for low Thyroid function?..Hypothyroid? Sorry for so many questions, you could PM me if you wish. :hug:

Sally, I am glad you're doing well also. :hug:

Anyone else?

Carol, 3.0mg is fine for protecting you, so I agree you do not need to up it. If you decide to at some point later, just to "see", I would not do it when the weather is changing to cold. As it is, I have to drop down to 3.25mg at the end of Sept/beginning of Oct, for about 3 weeks every year. Then I go back up to 4.5mg, cause I am fine at that dosage.

Remember too, that although you can do more ... you are doing more!! ;) So many people push themselves much more on LDN in the early days, then don't understand why they are having some issues; muscle fatigue, etc. I looked at it as "look how much I am doing ... it's no wonder!!".

Glad to hear you and Jappy are off to a great start. The really great part is when this goes on for months or years, and you can COUNT on feeling mostly ok on an ongoing basis.

I'm doing well too ... as per usual. No issues except when I got bronchitis and a sinus infection. ALWAYS TREAT INFECTION RIGHT AWAY!!! I did, and didn't end up in an attack or anything, but have learned that lesson the hard way in the past. :)

Cherie

I take Levothyroxine. 100 mcg daily. I take it on an empty stomach as soon as I get up in the morning. It's for hypothyroidism.

I really can't tell a difference when I take it. I've forgotten to take it several times and don't notice anything. If I just quit taking it I'm sure I'd eventually notice something. Luckily it's one of the generic meds that I can get a 3 month supply of for $10.

Thank you Kitty. I am on a smaller dosage since I just started it. I will be monitored in 4 weeks, then in 8 weeks with blood tests.

I am taking a Brand name Synthyroid, more money than yours. I will ask the Endo doc if I can switch. When I take it on an empty stomach I feel so drugged within that one hour in the morning. Also I can't wait for my coffee.

Thanks for answering me Kitty. :hug:

Bearing in mind this was only 50 people, there were allowed to stay on their drug of choice, it was only for 8 weeks, they started at 4.5mg (side-effects during that short period might outweigh any benefits), the questions are subjective, we can't see the raw data, etc ....:

A randomised, placebo-controlled, crossover-design study of the effects of low dose naltrexone on Multiple Sclerosis Quality of Life Inventory (MSQLI54)

N. Sharafaddinzadeh, D. Kashipaza, A. Mogthaderi (Ahwaz, Zahedan, IR)

Objective:

Multiple sclerosis (MS) significantly affects the quality of life (QoL) of patients. The use of low doses of naltrexone (LDN) for the treatment of MS enjoys a worldwide following among MS patients. There is overwhelming anecdotal evidence about beneficial effects of LDN on relapse reduction and disability and in general patients treated with LDN report improvements in a sense of well being, fatigue, as well as bowel, bladder and sexual function.
.........

Conclusion:

LDN is not higher than placebo in improvement of the scales and Physical or Mental Health composite scores of the MSQOL54. Thus LDN has no treatment effect on the QoL of MS patients.

http://registration.akm.ch/einsicht....E_ID=2&XNKONGR...

Here's the link to the assessment method/questionaire:

http://www.nationalmssociety.org/for...cal-study-meas...



Cherie

I'll bet that was some controlled study..:rolleyes:

I really wish the naysayers would quit doing these piddly (controlled) studies to prove us wrong and do a legitimate, longer term, bonafide, open study.

The Doc on the NMSS board has been laughing at our LDN for years..:mad:

BTW, Cherie, neither of your links worked for me..

Thanks for letting me know, Sally.

This is the one for the questionaire they would have used to assess QoL ... hopefully it works this time:

http://www.nationalmssociety.org/for...-54/index.aspx

(then you have to click on the questionaire link itself).

I'll try to dig up the other one again ...

Cherie

The other one was presented at the "25th Congress of the European Committee for the Treatment and Research in Multiple Sclerosis (ECTRIMS)", but you may have to search the site for "A randomised, placebo-controlled, crossover-design study of the effects of low dose naltrexone on Multiple Sclerosis Quality of Life Inventory (MSQLI54)"

Or I can send it to you by pm, cause I think I'm not permitted to post the entire document ...

Cherie

I am still happy to say that since I started LDN, my fatigue has improved,
the pain from the Fribro has lessen.

I am taking less pain meds.

I don't care what some of these research people say, I know what it
is doing for me and for so many of my ms friends.

They should get on this site and talk to us. But, they would be afraid
because we would prove them wrong. All it is, BIG BROTHER won't make a
lot of money on Naltroxane.

It is terrible how money rules our lives and the world. Well one thing I
know is that we all band together here because we know what the true story
is. I never wish anyone ill health, but maybe if more of these people that are
controlling our lives get sick with these certain awful diseases, maybe then
we will have some action on finding a "cure"

Jappy :mad:

Study of effect of LDN on MS Quality of Life Inventory (abstract)
 

lady_express_44 has asked me to post this link to an abstract of a paper given at the ECTRIMS conference in mid-September in Germany. The title is "A randomised, placebo-controlled, crossover-design study of the effects of low dose naltrexone on Multiple Sclerosis Quality of Life Inventory (MSQLI54)."

http://registration.akm.ch/einsicht....NMASKEN_ID=900

Thanks agate,

For the "Quality of Life" Inventory study, which was a double blind cross-over clinical trail, makes me wonder how taking their other MS and other medications, during this 16 week trial, could have negated the results of those PWMS who took the LDN?

They usually have criteria for trials. This was a bit bogus, IMO. It's like studying Provigil for 16 weeks when the person is on Amantadine or Ritalin.

How can they compare apples with bananas to pears? We don't know what other medications these trial people on LDN were on, so therefore, the results are not accurate. Also, it takes more than 8 weeks on and then 8 weeks off to get results, from any new added drug (LDN).

Clinical trials are usually a minimum of two years long. This was a cheap imitation of a trial IMO and has no bearing on the outcome of this drugs usage at all. Shame on them for even bothering to do this trial. :mad:

Take a 8 week trial on Avonex, Rebif, etc., and see if QOLI is fairly represented. It's impossible. I don't care what drug they tested, the point of the matter is it can't be done in that short amount of time, with no criteria of inclusions and exclusions.
My three cents..

Hi all - need a ton of help here please
 

I was dxed 2-08. Due to it being sever 1st line of treatment was/is tysabri. Looks like I've had this for years. Tysabri worked well and I had no lasting damage from 1st attact. I went into a 2nd attack in Nov 08. Again, tysabri worked ok, but I do have minor lasting damage.

Why I am here - very sure I'm in or going into my 3rd attack. In addition, I have a health problem that looks bad. The Drs can't get me well - tried for last 3 mos. Tysabri brings down my immune system too much. I'm set for next infusion on Fri, but doubt I'm well enough for. So, I'm looking at LDN.

What I do not understand is this - if tysabri worked (as a drug that suppresses the immune system) how am I too expect LDN to work as a drug that does the opposite? I know about LDN, but this part I really do not understand.

Any help would be much appreciated.

Pink :hug:

Hi Pink! Welcome to NeuroTalk! Here's a good website that can answer most of your LDN questions: http://www.lowdosenaltrexone.org/gazorpa/LDNFAQ.html.

I've been on LDN a little over a year and I've had great success with it. I hope it does the same for you! :)

Thank you for the info Kitty! I researched LDN a year ago but could not get a Dr to wright it. Hence, I gave up. Now, I'm begging you or anyone for a a Dr. name who will do a phone consult. I'm in the US. Since I'm in an attack, I need to get on LDN as fast as possible. Any help would be appreciated.

Hi Pink, welcome. LDN is not an Immune system booster. What it does is, raise the endorpnine level, which helps the IS to regulate.

Good Luck..:hug:

Thanks Sally, I researched LDN last year, but forgot how it worked. Kitty's link helped to refresh my memory. MS cog fog here. I'm going LDN as fast as I can get it written. It looked great last year, and looks even better now.

I just sent you a PM, Pink. :)

Oh great, more confusion here. It is stated LDN can be taken with other drugs as long as they are not narcotic containing. Is Xanex considered to be narcotic containing. Alprazolam (xanex) is a triazolobenzodiazepine, that is, a benzodiazepine with a triazolo-ring attached to its structure. From my research it looks close, but is not. All of the narcotics on the LDN NO list seem to be pain killers so really hoping I'm right.