Julie's Low Dose Naltrexone Journal: Day 1

Hi Julie,

I hope LDN works for you. I had heard so much hype about it for so long that I tried it and honestly, I didnt feel anything at all. No improvement whatsoever. I wasnt worse either though. It was like taking a sugar pill.

Good luck to you,
BJ

I could not get to your LDN blog and article from your first page. i was routed to an article about stem cells and something else. i had to access the articles thru “My Blog”. Help!!!

i hope you will join the yahoo group of ldn.although you have Ph.D .the people there have experience of years using ldn for ms and many other sicknesses.they can help you at the moment of need and tell you what can cause the ldn not to work optimal.i have seen wonders with ldn with crohn,AS,and copd .i wish you the best.

the ldn yahoo group
http://health.groups.yahoo.com/group/lowdosenaltrexone/

I’m really looking forward to reading about Day Two. Good Luck to you.

BJ: One is not necessarily supposed to “feel” LDN. It helps symptoms for many, but not nearly all. But it’s not intended for symptom relief, but to halt the progress of the illness. It’s a shame that many people quit taking it when they can’t feel any effects, but unless your MS progresses, most likely it is working.

LDN is not “hype”. It really works incredibly well for many people, but unless you’re among the lucky ones who get symptom improvement and/or your MS is very rapidly progressive, you might not notice much.

i came of avonex and codeine to try ldn i was tired of having two days wiped out of every week with the side affects from the injection.Unfotunately I had a relapse with in a month of doing so,the next one came within two months taking away the ability to walk and leaving me housebound. Although it dident work for me i know it has for some i guess i was just unlucky im now on copaxone which i seem to get on with ok but im always looking for a cure.

congrats on getting your script for the LDN.it can be a challenge.i got mine back in september of ‘08 and ive been improving ever since.keep heart,though.from what i gathered from all the account i read of LDN symptoms can actually seem more prominant over the first few weeks. and for many people can take upwards of six months before seeing any true scope of benefit.
keep expectations realistic,eat right and get plenty of sleep and exercise. the LDN isnt going to just erase the MS,theres a lot of hard work on your part that goes along with it too.
i hope you get to see the same kind of benefit the i and so many other have.

I went off Avonex 3 years ago and only take only 4 mg of Naltraxone. I was so happy to be off the shot it is hard to say if I the reason I felt better was mental of physical. No side effects, no weird dreams and I feel great most of the time. One set back last summer, maybe triggered by a bug bite… I had my Neuro up the dose from 2.5 mg to 4 which is the dose everyone at my compunding pharmacy takes, and no problems since.

Good for you! I’ve been on LDN (4.5 mg) since early 2007. Some of my symptoms got worse in the first few weeks, such as muscle stiffness. I had the vivid dreams for several months, but it wasn’t unpleasant and it didn’t make me more tired. The main thing is, I hope you stick it out and give it a fair try, which in the case of LDN would be several months! (I also noticed that my mood improved almost immediately, and that was very good because at the time of my diagnosis I was probably as low emotionally as I ever had been. “Devastated” would be an understatement. With LDN, I feel good most of the time. That, in itself, is HUGE in my book.)

I have had RR MS for 16 yrs, and used AVONEX for 12 yrs, and REBIF for the last 2 yrs. My neuro placed me on LDN about 4 mos ago, and my side effects were so bad, that I had to stop taking it within a week. Felt very dizzy, headaches, and a lot of anxiety. My arms also went numb-didn’t like it at all. Good luck to those of you that can tolerate it

those who have trouble at first are usually taking too high of a dose too soon.granted we are taking a fraction of the FDA proven safe dose of 50mg.but titrating up can still be a good idea.start at 1.5mg for a week or two,then up to 3.0mg for another week or two and then go up to 4.5mgfor a week or two. if you feel the 3.0mg worked better for you than the 4.5, you can always go back down.
you can do this easily by getting your script filled in 1.5mg caps.and you can adjust as needed.supposedly, if you can stick it out the added prominance in your symptoms is transitory,and will pass

Your description of “feeling like someone who didn’t have MS” intrigued me. I’ve also had that experience; like someone flipped a switch in my system and the MS was “turned off.” The deterioration of muscle strength caused by the disease process was still present, but the crushing fatigue and weakness, mental fog, etc., is absent. Amazing feeling. It only lasted a few hours; but I agree, a once-in-a-while occurrence is welcome. The most amazing thing is that now I’m realizing it came on suddenly (it happened maybe twice that I recall) and hasn’t happened since. Now I’m wondering if the time when I was experiencing it was when I was on LDN. I talked my neurologist into letting me try it (liquid form) back in 2004, I think. I was only on it for maybe a month or two and didn’t see any dramatic change, so stopped. Perhaps I should give it another try. Like you said, having that feeling even once-in-a-while would be worth it.

Oh, brava – for your courage! I have been on LDN since June of 2006. Began at 1.5 and progressed to 3 mg then 4.5 by Sept. of that year.

Changes:
I no longer use a cane for walking outside of my apartment. (I gave it away over two years ago.)
The crushing fatigue is gone. I used to take daily 1 – 1 1/2hr. naps – plan nothing for the evenings. Now I nap maybe once in three months and have resumed work as a nanny part-time. (This includes “date night” sitting twice monthly.)
Threw away my handicapped placard.
No tingling in my legs (which would work its way up to my hips on bad days.)
In fact, on a daily basis – no tingling, numbness, pins and needles, period.
No electric buzz down the back of my neck when washing dishes.
I finished the MS Walk in Tacoma this past month. (I actually spaced out training for it!) No ill effects the next day. I walked under the team name “LDN _ Something Good!”

I have had a couple of days of light tingling in my legs this week. (This is highly unusual for me now.)I am fighting something in my left ear and believe it may be the trigger. No fatigue or other symptoms though. I am taking it easy this weekend.

My neurologist is an MS Specialist. I saw her this past winter after a two year absence and her response was, “You are NOT the same person!”

I credit God with granting me the grace to fight when there was no fight left in me. I was in deep depression the spring before I began LDN. (A flare left me with permanent double vision, lost my nanny job, and my older brother died of respiratory complications following brain cancer surgery.) Yet, my Lord enabled me to actually get mad at this disease and not “settle” for the life I was experiencing. I also sought out healing prayer that same summer. I know His strength upheld me and guided me in finding LDN. Copaxone, Rebif, and Avonex did little to stave off 2 – 3 flares yearly that required IV Solumedrol. I had nothing to lose.

I am probably in the high 5% that actually regain almost complete function using LDN. As I said the double vision is permanent. I have corrective prism lens that enable me to see just fine now! In the beginning, my best hope was no more flares. I’ve been blessed with more than I could ask or think.

I am going to begin adding D-Phenalaline, 500 mg twice daily to my routine of supplements. Check it out for yourself! I do suffer from chronic back pain and am hoping it will sustain the endorphin increase caused by the LDN during the night. (Hopefully this will allow me to decrease or phase out the Tramadol.) This was Dr. Bihari’s protocol. D-Phen may greatly improve the lasting effects of the LDN during the course of your day as well.

You are in my prayers!

warmest regards,
Jody V.

I have been on LDN prescribed to me by a neuro in AL. for almost 2 years
(I had to search her out–my other dr.s wouldnt discuss…)
At any rate, I was skeptical but hopeful, and didnt notice much for a few weeks. Then all the sudden I am walking my inclined driveway with less effot (after years of struggling with that) getting up out of chairs more easily, and a host of other little things that truly surprised me. I rarely use my cane anymore. My balance is better and I just feel better. Not 100% but, most days are definetly improved. If I get tired my MS symptoms are more pronounced, but i have to say, all in all I am very pleased. My problem now, is that I have moved to Texas and need to find a doc here (in the conroe/houston area, who will be willing to prescribe LDN, and a compounding shop who can make it…any suggestions out there?..

Carol….I’m sorry for what happened to you.

What happened to Week 2 on LDN?

Hi Julie

Was wondering how you got on with the LDN and modafinil in combination
My parntner has taken LDN for about 5 years now and swears by it…he is about to try Modafinil
was wondering what your experience has been
thanks

anna

Dear Anna,

I must not have been clear in my blog – I decided to try LDN instead of Provigil (modafinil). My doc said not to try them at the same time – I don’t know why exactly – but I didn’t push it since I really did not like Provigil when I used it last year in an attempt to get some energy during the summer. It didn’t really work for me.

Luckily, the LDN is taking away a great deal of the fatigue that I was hoping to address, so I am content to stay with just that. Would not say it’s perfect, by any means, but way, way better.

Let me know what happens with your friend or have him write in directly with his experience. The more info we can collect, the clearer the picture for all of us.

All the best,

Julie

I started 3 mg a month ago, with no really noticeable symptoms other than initial irritability that went away after I backed down from 3 mg to 2 for three days. Back up to 3 for the rest of the month, I did not feel any significant improvement in numbness or stiffness, but since I didn’t feel any worse, just kept at it. Last week I took two of my 3 mg by mistake one night, and had a fabulous day the next day, feeling like a new person. I did not double dose again until last night when I decided to try it on purpose. Today I feel like a zombie. Guess I’ll see if I can have my dose altered up from 3 mg to 4 or 4.5 and try that for a while. But why is over 5 mg not recommended?
–Steph

I just started taking.25gm LDN for cronic fatigue syndrom and because I’m a recovering drug addict.I have almost 6yrs completely sober from heroin and I was just taken off of a year of subutex therapy(24mg/day).my doc says I suffer from my brain and aderenal glands not creating endorphines due to my opiate/opiod abuse.I can find any info on this exact situation but I would love to hear any imput anyone may have!I believe my doc is just hopeing this will balance me on a wim,lottery odds.I have a family and I’m a good dad and I have strong moral beliefes,I have come a LONG way in my recovery and now I just want to feel normal and comfortable!!anyway,I’m glad it is helping so many of you and I wish you all the best of luck! Good day mates.