It was great, not much rain, warm weather... went into contract for a condo, took the Auto Train home from Orlando, to Lorton VA.

and I'm home in NY now.. we just got a nice snow storm, 1-2 feet throughout the area. My area only got 8-10. I won't go out til Tuesday.

I found a good chiro .3 miles from the condo. I still go to my chiros up here as well. They got me out of a crisis last month.

I should be closing on the condo in January, won't move down til after the snow season, so not til March probably.

I am happy to say that I honestly believe that if it wasn't for
the LDN I would have crashed these past few months.

With the personal stress that I was under some of my ms symptoms
were really starting to act up. But, they would only last for a few days or
less. They also didn't get as bad as they would have like in the past when
things went real bad.

I had one of those drs. that didn't want to give me the LDN scrip, but
I just kept fighting for it. Thanks to this forum I found out about it. You don't see any information in any drs. office telling you about it.

Jappy :):)

Hi all,
Well I did a big boo boo. I lowered the LDN back to 3.0 mg when I felt better about my mild relapse. Duh! That was pretty dumb, and lame-brain of me. :cool:

My MRI was good, so good I got cocky about it and figured the 3.0 mg was just as good to keep the relapse at bay.

Boy was I wrong. I I have been getting a lot of the old MS symptoms back, which means the mild relapse went acute. Stupid, Stupid me. Now I know better.:(

I went to Neuro on Monday and it was confirmed that I am in a relapse from he!! again. She actually said why did you lower your dosage of LDN? She had been talking to many fellow Neuro's lately and they are prescribing LDN to their patients. She is a believer that I had really benefitted on the LDN.

So I was 18 months without a relapse, which is good for me. I usually had two a year that were the pits. So it is easy to see why I was in a mild one and figured I didn't need the 4.5 mg.

She said I should up it again to 4.5 mg and I did.. :eek: But I am to have IVSM 1000 mg for 5 days starting tomorrow, Saturday the 26th. The medicine was delivered to my house and the infusion nurse will put in the Heploc. I will do the rest for the 5 days.

Connecting and changing bandage and tapes and hooking up the drug for 5 days. They are those little pump balls of pre-mixed IVSM from the home infusion pharmacy, with little water and salt. After 3 days I will have the nurse come back and move the heploc. I don't like having it in one spot for more than 3 days. Then I will do the next two days and remove it all.

So I have learned the hard way. I was doing well, even with a mild relapse until I lowered the LDN. I should have stayed at the 4.5 that I was on. I must need that much in my body. It has stopped progression and reduced my relapse rate quite a bit.

So I will pay the piper this time and take the IVSM because my mobility is affected, and Neuro requested it to get my body back in sync with the LDN.

I hope it is okay to take LDN and steroids. Does anyone know?

I think the holidays did me in too. Why is such a beautiful holiday so stressful? I thought I had it all planned out early, but I guess MS is still unpredictable and hits when you least expect it. Thanks for listening. It may help someone someday who is in the same situation.

Merry Christmas, Happy Chanukah, and Happy New Year to all, or celebrate the Solstice. Dark to light.

I will check in to see if any one knows about steroids and LDN in the morning, but won't be back on until the steroids turn me into motor mouth, probably Sunday.

Be well and take care everyone. See you soon. :grouphug:

Sorry to hear, Lady. :mad:

Yes you can do steroids on LDN.

You are sure you have no infection going on anywhere ... right?

Cherie

Awwwww, darn it, Lady. :( My DD did the same thing...got cocky and went off LDN, thinking she didn't need it any more. She had a relapse from **** too and learned her lesson the hard way. She even cut the Prozac too. She's back on both now and back in remission..:)

Feel better soon, Lady. :hug:

I'm having an episode of ON now and I feel like it would be much, much worse if I were not taking LDN. I don't even want to try and see what it would be like without it. :eek: The pain of it is gone - only lasted four days....I'm just left with the visual sx. But.....I can still see to drive and walk around so I'll just deal with it till it's run it's course.

Thanks my friends.:grouphug:
One dose and I am motor mouth already. Hyped up for a few hours!

Nurse came late, at 7 pm EST. I had my first infusion IVSM 1000 mg. He (male nurse) put in the Heploc I did the rest. He knows I have my medical training/experience (although a bit antiquated) but I know the drill.

He was surprised I don't get the metallic taste, never did. He said I am the first in 12 years he heard of that fact. Oh well.

He took down the meds I am on. I told him about LDN. He said he would pass it on to the MS people he sees. He never heard of it. I told him to Google. :) He left the house with tons of info on LDN. We have to pass the word. Until there is a cure there is LDN to help us. :)

I have been back on 4.5 LDN since Tuesday night and feel better pain and burning wise. I never stopped taking it. I just went down to 3.0 mg when I had the Bursitis of the shoulder and the MS was doing okay, with the mild relapse, as I said on above post. BTW, the MS hug is very bad.

OM Goodness! I choked on food (esophagus spasms, then no swallowing ability) in front of my whole family and Bro's family at holiday dinner on Thursday, at Son and DIL's house. I could not get my breath.
Scared me shi!less too! Then I was fine, but with little voice volume.:cool:

They all looked at me like I was having a heart attack and poking each other. Glad it wasn't an emergency, they just sat and watched me trying to get some air in and wheezing. My DH knew, then explained, "Let her be for now." I was sooo embarrassed too. :o

This worsens with an acute relapse, but I had to see my family. Sick at home or sick with family and Grandkids, I choose my family. I needed them. Pity party was over, but the presents helped. :) and I didn't cook. Wobbly and weak.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Cherie thank you. I thought I had read Steroids are okay with LDN, but I am glad you confirmed it. I think I would take it anyway. :D I indeed learned a lessen, alas, the hard way.

I had my PCP test for UTI since I was having urgency, frequency and retention. Negative and the culture too. No other infection noted, (knock on real wood).

Just the Bursitis from overuse injury, which is inflammation of the Bursa sac. Once that darn inflammation gets in the body, all he!! breaks loose and autoimmunity kicks in, attacking the whole body with MS, that's my theory on why I went acute besides lowering the LDN that was preventing this from getting worse.

Kitty, I am sorry to hear you had an attack of O.N. I have had a few in the past. This relapse brought me a new symptom Vertigo. Oh the fun, NOT! I hope it goes completely away for you. Prayers and hugs to you.

Kitty many MS centers where I live are now prescribing LDN. That's why my Neuro said up the dosage again to 4.5 mg. She was very conservative before. Not now.

Sally, my middle Son and DIL, who live in Ohio sent me an Official Ohio University sweat shirt. I am a team player now. :) and other nice presents too.

Jappy, don't stop the LDN. I am on it one year now and very happy with the results. We still can get other things that happen, but many improvements did occur. Glad you finally got the LDN. :)

Hi Florida Larry. Hi everyone else. Be well and take care all.

Thanks again for listening. Disclaimer: I am not responsible for any typo's or use of wrong words, times and dates. I have major brain fog with this attack.
Hugs to all..:grouphug:
Motor Mouth is tired.

:circlelove:(((((((((((((LADY))))))))))))))

I went yesterday to the pharmacy to pick up my scrip of LDN

The pharmicist was telling me that there are a few more people that
are now using this that have MS.

He said he has been checking into LDN on the internet and is so
surprized and happy to see how much it is helping in different diseases

He also said that LDN is being used on people that have LUPUS and
it is showing a positive effect.

We also talked how drug companies don't want to hear this because
there is no grrrreat profit for them. They cannot PATENT it because it is
already out there. POOOOR COMPANIES. Terrible when MONEY is more
important then the lives of people.

Jappy :mad:

Jappy, that is so true. It helps us, but it is pretty cheap compared to the other drugs.

I had upped mine with the relapse but now went back down to 3.0. I might have to stop it next week because I am having a Colonoscopy and the Gastro doctor will by sedating me (out like a light) so I will taper down until the test and start up again right after the test.

We have to play with this drug to our own needs. I am glad it is so versatile that we can do this. 4.5 might be too much for me. I will play with the dosage after I have the test.

I am not looking forward to the prep work for the test, but what's a girl to do?:D The LDN has helped my other autoimmune colon disorder so I am sure the test will be okay. They just like to keep tabs of it.

For me it seems like a pain in the buttski to have the test when just out of relapse. But it is scheduled already and approved by medical ins.

I'll just nod-out and brave it. :cool:

Check-in how is everyone else doing?

I don't know if it was wise, Lady, but I went through my gallbladder surgery while on LDN.

I did retain a ton of fluids after the surgery, but I don't know if that had to do with the pain meds I was using after, the surgery itself, or something to do with LDN and codeine (anesthetic). The anesthesiologist didn't think there was a problem continuing with the LDN though, and we had a LONG meeting before the procedure.

I wouldn't even have considered dropping the LDN for colonoscopy, but I think that procedure is done differently in Canada then the US, or at least the way it was done here when I had it. They didn't give me anything for the first while, then drugged me with just a sedative of some sort (Valium/Ativan?) to finish the job. That was many yrs ago ... but they still don't knock us out here, I don't think.

Cherie

An update:

I have been doing really well. Then I was not so well. Then it got worse. After that it got much better. It stayed that way for a while. Then there was a downward trend. After which I felt better.

In other words, I still have MS, but LDN still helps quite a bit.

Cherie, I just went out today for the first time in 14 days. Did a lot of resting, and well.. my body must have needed it. We had 24 inches of snow last week, eek, so I was going not going out. I also did the IVSM one week too.

Anyway, the only reason I went out is because my DH had his Colonoscopy today and they would not release him unless he had a adult driver to take him home.

He drove there and I drove home, a bit weak still.. but I had no choice. He was put completely out. Put on the gown, insert the IV and wake up in recovery one hour later.

I sat three hours in the waiting room. He was acting all happy and silly, talking and laughing none stop, so I would never let him behind the wheel. He acted drunk. :rolleyes: Drug drunk.

So we both has it done before (every 5 years), so we know we go out like a light here. Best part is you do not remember anything of the procedure. :)

A Sigmoidoscopy they just numb the outside and you are awake for that one here.

So I know I will be getting anesthesia in the IV and want to make sure I am not awake during this event. My colon is very sore inside all the time, belly too. It's the other autoimmune disease I have. It even hurts to press on the outside like the GI doctor does.

So all this to say yes.. I need to come off LDN, one to two days before. No biggy. That night I will start up again.

Marion, you have been on the MS roller coaster lately. Sorry to hear that. I hope you stay well for now, okay? The holiday time is always the pits for many of us. We get stressed or overdo things. LDN is great, but not a miracle. We still get stuff. (sigh) :hug:

Sally, I love your new avatar picture, you look terrific for a mature dame.:D

Back on LDN tonight. :)

Only missed one day of it. I couldn't stop it before, I didn't want to. I had my Colonoscopy and was put out for one hour, I slept in recovery for two more hours. GI doc took 3 biopsies, but said it looked good. That day before prep stuff, is real nasty :eek:

I feel so much better when I am on LDN. My left leg was swinging very wide today. Not much control over it. I asked the nurses to walk me to the dressing room and ladies room. I am glad it's done and over with.

Now if the weather would be so kind as to warm up, I would be a really happy camper.:)

I have been on LDN for almost a year now - I don't notice any improvement and in fact both my balance and walking have deteriorated quite a bit during this time - I'm staying on LDN because I don't know if my deterioration would be worse without it and I'm still hopeful I may improve -

I know what you mean, KarenMarie. Sometimes I wonder how effective my efforts are in trying to stave off the progression of this disease. What it all comes down to is - you make your best choices, and you take your chances. I have been feeling pretty lousy lately. In this frame of mind it is easy to start to second guess myself. But I know that this time of year is always rough on me, and there are better days ahead. How about I make you a deal? I’ll keep a stiff upper lip if you will. Whaddya think?

Welcome back Karen, nice to hear from you. :)

I'm so sorry that LDN doesn't seem to be doing the job for you. I don't blame you for questioning it's efficacy for you. :(

Are you feeling any benefit at all? For instance, I don't notice walking any better, but I do notice better urinary and bowel control. I have also noticed that my fatigue level is just normal and not horrible, as it was, prior to LDN. I also notice an overall feeling of well being (most days).

I've been on it since April 12, 2003 and I know it's still helping me, but it is not a cure...Once I came to terms with that, I'm ok with it. :)

I will pray that LDN keeps the MS Attack Rats and Progression Rats away from your door.....any extra benefits would also be nice. :hug:

How's everyone doing? It's been quiet on this thread for a while.....hope that means everyone is doing well.

I switched the time I take my LDN from bedtime to midday. After speaking with my doctor we both determined that it was playing a major role in keeping me awake at night. The couple of times I had forgotten to take it before bed I noticed that I slept much better.

So, now I take it sometime between noon and 3 PM. I'm sleeping much better at night now. He said that I'd get the same benefits I'd been used to with it but I'd just sleep better. He said that some folks are like this and find taking it earlier in the day better for them. I always knew I was weird!! :cool:

Hey, Kelly, we're all different. I believe in the, whatever works for you, therapy..:D

LDN is still my fav. med.:In-Lurve:....Prozac being my 2nd fav.:) Now, if I could just find that fountain of youth. :rolleyes:;)

Has anyone ever done an "every other day" course of LDN? I've forgotten to take mine probably three or four times over the course of the last two years. I haven't noticed any big difference, but don't want to rock the boat. The only benefit I see is that my LDN would last longer. But it's so inexpensive that it's not worth the possible flare up that might occur by not taking it regularly. Just wondering if anyone has experimented with it.

I guess skipping one day (NO MORE) would hurt, once in awhile, but, for myself, I wouldn't think of it. DD skipped a couple/three days and had an attack. As soon as she got back on it, it was back to remission.

My advise...Don't!!:)

I'm not gonna try it, Sal. :cool: I have enough to deal with that I don't ask for.......why roll the dice!!? ;)

I never missed more than one day.... 7 times I think now.... since 2003

Hi everyone,
I only missed one day since Dec.15,2008. That was for my test of the colon test, a few pages back on here.

I wouldn't stop taking LDN if I was paid to stop. :) I have seen many improvements over time. I don't want to ever go back to those crapola days.

It sure helped me more than the DMD's did. In fact the DMD's didn't help much at all, come to think about it. They caused more problems with their side effects. I don't have side effects on LDN, which is great.

I am thinking of taking it a bit earlier too Kitty. Not as early as you are doing. I go to bed so late I think my endorphins do their ritual before I get to bed, so I should take it a little earlier me thinks. :hug:

Anyone else?

PS: I read that S.J. had the surgery for CCSVI. Can anyone confirm?

Update:

I've been taking my LDN between 4 AM - 7 AM now for over a week and it's been awesome!! I feel so much better and sleep so much better. I usually take it with my thyroid pill first thing in the AM when I wake up - which is usually around 4 AM. I always go back to bed around 5:30 - 6 AM and sleep really good for about 3 hours. :)

Kitty what time do you usually go to bed at night ?--and how long do you sleep? You wake at 4 am you said, but how many hours of good sleep do you get before that 4 am wake up time? Just curious. :hug:

Then you go back for 3 more hours, is that a nap of part of your nightly total?

Update:
I got the results of my Colonoscopy. In 1998 I had been Dx'd with Collagenous colitis (Microscopic colitis), seen only under a microscope, causing diarrhea and/or constipation. An auto-immune disease he said.

The biopsy report now said it was gone??? I asked the Gastro doctor how could that be if I was born with it? He said he did not know. :confused:

Does LDN help with bowel disease such as Crohn's-like and similar bowel diseases? I am puzzled how this just disappeared. Does anyone know?:confused:

I've never been a good sleeper. 4 hours at a stretch is usually the longest I can manage to stay asleep.

I usually go to bed anytime between 9 - 11 PM. Up again sometime between 1 - 3 AM. Up again around 5:30 AM only because I'm woken up by my son getting ready for work (he's noisy + I'm a light sleeper). Seems I sleep best when I go back to bed around 6 AM.

I wish I could get a consistent 8 hours at a time. But I never have and probably never will be like that. :rolleyes:

I've read that it does help conditions like Crohn's. I know someone who takes it specifically for Crohn's and is doing remarkably well.

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

OMG, Lady, that is wonderful news. Yes, LDN has been studied with Crohns and has good reports, as far as I've heard.

You should go to the LDN Homepage and check on it yourself and also report it to Dr Gluck, there...and To Skip's.:cool:

:hug::hug:

So happy for you, Lady! Great news! :hug:

Kitty, I've changed the time I take my LDN and now can fall asleep much faster at bedtime. Right now I'm taking it at noon, but am gradually working my way towards taking it with morning meds (including thyroid pill).

It never would have occurred to me that LDN was affecting my sleep if you hadn't mentioned it. Thanks! :hug:

Hey, Twink! I'm sleeping better, too. I take my LDN anytime between 4 AM - 7 AM. I try to take it as close to 4 AM as I can.....but I take my thyroid med when I first get up and I think you have to wait about 30 minutes after taking it (thyroid med) before you take any other med. Something about the absorption of the thyroid med. Good luck!

The reason that Dr Bahari said to take LDN with a fast release filler, at bedtime and before 3am, is because, our endorphines are usually replenished in the wee hrs of 3am to 5am and by blocking this temporarily, our endorphins then are fooled into doubling, because of the temporary blocking.

If your clock is off kilter a bit, then taking LDN at an earlier time may be ok for you. I wouldn't advise all to change, though, because the reason is still there, just maybe not for everyone.

If you find that the LDN may not be doing the job it was, then, switch back to the 9pm to 1am time.:)

Hi Kitty taking LDN 4 am to 7 am is probably when YOU make your endorphins because you go back to sleep after that. I can see that working for you.

I think the whole benefit of this drug may be trying a little time changing, like we change the clocks, does our bodies know that now endorphins should be made at a different time? No.

Some set a clock and take their LDN in the middle of night if they go to bed early, like 9 pm. That may be too early to take the fast release type drug that this is. If you take the liquid it really kicks in right away and may not help when you need it during sleep, if you go to bed early.

This may be the answer as to why the drug helps some and not others who try it.

I don't think daytime is a good time to take LDN, as how would it benefit? I believe taking it at a night time sleep is the best time, but maybe adjusting it a few hours before or after your usual time, will work better because we are all so different.

Do I make extra endorphins at 3 am, or 6 am? Maybe 2 am or 4 am. 5 am or it might be 2:30 am to 4 am. If I am a late night person do I make them later in the night or early in morning?

I believe there is a variance so to play with LDN times may be a good thing. If it is working for you and you sleep well then don't change a thing. If not, then varying it a little might work better for you.

I know once I take it, I can feel the drug doing something, so I make sure I get right to bed. Staying up later will make me feel weird. I know it's trying to work but I am not a sleep yet.

I hope I got this out right, so my thoughts are understandable. JMO
Anyone think this has merit? I am not a pro on this LDN, just trying to reason it out. There might be more responders to the drug if it is varied a bit.

It's true, Lady, nothing is set in stone and our bodies are all different and react to meds in different ways at different times.

Does anyone notice a sudden burst of strength and energy at about 4am? I usually go to bed at about midnight and take my LDN at 11/12midnight.

I have a habit of waking at around 4am to go potty and I notice this burst and think, that this must be the Endorphines doing their thing.:) I go back to sleep, but not right away. I rather enjoy the moment. ;)

My time capsule seems to be working, so I won't change, now, but I have changed times over the years.

:grouphug:

LDN dosage
 

I am just starting LDN and have heard different views on the mgs to start with.

What dosage did you all begin with? and What is your current dosage?

Did anyone notice that they did better on 3mg than 4.5mg or the other way around. I read somewhere, that women tend to take the 4.5mg.....any truth to that?

thanks so much.

I started out on the 3 mg dose and stayed on that for a long time. First time I tried to bump it up to 4.5 I got spasticity in my legs. Went back to 3 mg. I think I tried to increase it a couple of times before I finally was able to tolerate it. The last time I tried it just "worked" for some reason. :confused: I've been on 4.5 ever since.

I also could tollerate only 3mg, in the beginning, and after about 2 years went to 4.5mg, without a problem. I didn't notice a difference, really. It's all good!!

I know peeps who stayed on 3mg for the past 7 years and some who started out and stayed on 4.5mg for the past 12 years.

Dr Bihari(Our Founder) calls 4.5 the ultimate doseage for LDN and yet admits that some do better on a lower doseage. We are all different. :)

sally....

if you didn't notice a difference between the 3mg and 4.5 mg why not just stay on the lowest dosage that works?

I think the less medication the better.

This is all so new to me. and now I have had an EEG with spikes in the left parietal lobe. (on one 20 minute EEG) I am scheduled for a 3 day EEG now.

sooooooo overwhelmed. Do you know if LDN is used with seizures?

Since Dr Bihari said that 4.5mg was the optimal doseage, I thought I'd try it to see if I liked it and I did..:D