Where did you find this Sally? I find this very interesting.

I communicated with some of his patients and they told me this. He actually thought he had MS but that turned out not to be true, so he kept taking it and his wife as a cancer preventative.

What can I say...he believes in his LDN..:)

i sure have.. i missed a dose one night and woke up the next day feeling really out of it mentally + sore and tired..

LDN check-in
Hi everyone. :)
Just checking in to say I am doing very well on the LDN. I see my balance improving so much. I am so happy about that.

Balance and fatigue are my most bothersome, residual symptoms, since I had so may relapses in the past. I pray "The Past" is the word I can use. I am stable too. Yippee!:)

Any new LDN users care to post?

How is everyone else doing that has been on LDN for a while? Anything else new going on in your busy lives? New babies, new houses, Spring cleaning? Have you more energy since on LDN?

This has been such a quiet thread lately. :confused:

I have a question myself. Has anyone found that they have more gas than usual from the filler?..and I don't mean in their car. :hug:

Thanks for the good report, Lady. I'm so glad that LDN has been helping you to live your life a little better. Untill a cure is found, that's all we can ask for.

I did notice a little extra gas, at first, but it seems to have gone away, over time. Some have complained of diarhea for awhile. One person I know, had to quit LDN because of diarhea. he must have been allergic??

I'm still doing dandy for an old fart. Thanks for asking..:hug:

No pun intended, huh, Sally??!! :D

I've been doing pretty good. I seem to feel better when I'm at home.....where I control the lighting and temperature (and atmosphere). When I go out somewhere I still get dizzy and light headed due to the florescent lights, high ceilings and general noise of public places. I guess that's just something I'm going to have to learn to deal with.

I have started taking Zyrtec for my allergies. I take it at night because it tends to make me drowsy. It seems to be working well, though. I've not had the itchy eyes and sneezing like I had before.

I've got to make an appointment to see the Neuro soon.....it's been 6 months and I really have no reason for going except to keep my records updated for SSDI and LTD.

Hope everyone has a good week!

I'm checking in too! :D

Doing sooooo great on the LDN. It is getting me through some very emotional and stressful times. Nothing we can't handle and surprise, surprise...it doesn't seem to be getting me down physically and I believe it is because of the LDN!

We are moving in 5 weeks to Missouri...so exciting. The bankruptcy is almost completed. We are just about to the "do over" stage and getting excited to be there. My tastebuds seem to be coming back a little (downing the zinc and magnesium) I sure miss tasting. :rolleyes:

Hugs to you all...it's going to be in the 80's this week! Yahooooo, spring is finally here. :)

I am doing really well. This is the first springtime in many, many years that I am able to do at least a tiny little bit of yard work. I do it a few minutes at a time, and rest inbetween. It is certainly the first time in a long time that have the mental and physical energy to even consider doing this. LDN has given me so much hope. When I think of the difference between me this year and me this time last year, it is like night and day.

I was hoping that "no news was good news", and I was right. Congrats everyone.

:grouphug:

Good articles about LDN:

http://ms.about.com/od/treatments/a/LDN_overview.htm



The comments after this next article are good:

http://ms.about.com/b/2009/04/20/low...-sclerosis.htm

Status quo for me here too . . . and coming up on four years in a few weeks. :)

Cherie

Great articles! Thank you so much for sharing these. :Thanx:

I just celebrated 6 yrs LDN on Apr. 12..:)
Larry LDN started a week later than I, in 2003..:)

I have a friend who has been on it almost 12 yrs. Won't mention her name, but I think you know her.

Cherie, have you considered putting DD on LDN?

Onward and upward...:D

Yep, I think you speak of J, Sally?

I don't think my doc would go along with LDN, at least not until something concrete is determined. I know he'd leave it up to me then . . . and I would choose LDN for her . . . but hopefully we won't have to cross that bridge.

Cherie

Checking in from beautiful central Utah! All is well.

I had enough energy today to shower and make my bed, make 3 batches of strawberry freezer jam, bake cookies with my granddaughter, and go to Spanish class. And water the flowers.

Its midnight and I'm still able to move and think. LDN is doing great for me, and despite the fact that my numbness is progressing, I am still able to do anything I want. Well, except lose weight, lol! :o

I just thought, It couldn't hurt, Huh?

:grouphug:

I just got back from a week in Florida with the family. My dad is still doing well, 25 months on LDN. He still walks better than I do!

4/17 was 6 full years for me now :)

I've been feeling pretty good lately....energy wise. Not sleeping as well as I'd like to but that could have something to do with noisy kids who have the ability to stay up until the wee hours of the morning. :rolleyes:

I have noticed that my left arm and hand has been noticeably weaker and I have a tingly, itchy feeling up and down my left arm almost constantly. But scratching it only makes it ache.....it's like an itch that I can't find to scratch. :confused: It's more annoying than anything but the achiness in my hand especially does bother me at night. I've been taking Aleve for that. I'm wondering if I might have arthritis, too?

Can everything just feel right all at the same time.......even if it's just for five minutes!? :rolleyes: :p

First pill tonight - keeping fingers crossed !!!

Hi KarenMarie,
I have my fingers and toes crossed for you. Good luck with the LDN. :) Enjoy the world of dreaming, as you see improvements over time. What dosage did you start on if I might ask?

It sounds like everyone is doing okay. Glad to hear that. I am doing well also.

Kitty, I have Arthritis in my fingers. Wear and tear.. and age can factor in their too. Great articles thanks.

Larry, I'm glad your Dad is doing well on LDN.

My brother is on it, a month after my dad, 4/07, for sarcoidosis and he's stable.

Welcome to the club, and hope it helps keep you stable!

Good luck, Cherie

Dr. Skip of Skip's Pharmacy in Florida (where I get my LDN) told me that he takes it prophylactically.

Just thought I'd mention that I was posting on an exceptional day. Haven't been that ambitious since then, lol!

Wishing you the best of luck on your venture with LDN. I hope it makes you feel better, as it has, me, for the last 6 yrs.:hug:

OK Karen......how've you felt since taking LDN the past three nights? Any different? I hope it does some good for you. Please let us know when you get a chance! :)

No difference yet - but have been having a back spasm since Tues AM - so I doubt anything would help !! - will know LDN is helping when I can get into bed a tad easier and can actually stand up from a sitting position without trying to remember how to stand !!

Karen, good luck!

This time last year I walked with a walker, and made good and liberal use of my power chair. This year? I went kayaking.

While I was helping tote my kayak to the water, it occurred to me that this time last year I never would have been able to make it from the car to the shore unassisted on such uneven ground.

Now, don’t get me wrong. We had to stop and put the kayak down a couple of times along the way, and it occurred to me that at the end of the day it would probably be ten times harder for me to do the same thing, but I did it.

We paddled for a couple of hours, and I was totally spent by the time I got home. Between the LDN, and the exercise I can now get because of the LDN, the quality of my life has never been better.

Thank you, LDN, and thanks to all the folks here that helped guide me down this path.

Wow, Marion, I wish it worked that well for all of us, but your MS is not my MS and I'm just so happy how it works for me.

Thank you so much for your testimonial and my wish for you and others, is that it keep on working that well forever.

My DD is in complete remission, because of LDN. That is all she takes and wouldn't think of missing a dose (anymore :D)

When did any or all of you start to notice a difference after starting the LDN ?? Or not a difference but a slowing of the downhill slide ??

It's different for everyone, Karen. Some feel great, right away and a decrease in symptoms. Others may take awhile to feel the effects and benefits. A few, who give LDN at least 6 months, feel nothing and a small number are allergic to the LDN or the filler and stop.

I remember 6 yrs ago, when I started LDN,I felt better right away (I'm sure it was the lift in endorphins).. I remember being upset that I wasn't having more symptom relief (I expected too much :rolleyes:) I found that SPMSers don't get the same benefit as a RRMSer does.:mad:

Anyways, I felt good, for the first time in years, so I kept taking it and within and after 6 months, slowly, I saw improvemnts in my symptoms. Ihave remained exacerbation free, except for a few heat related attacks, which were gone when the weather got better and I cooled down.

If you started out with a lower than 3mg doseage, you may not notice the full effect, until you have titrated up.

Keep it up, Karen and let us know how it goes. :hug:

I remember when I first started taking LDN I was always second-guessing myself. For example, before LDN I had to hold on to the wall while I rinsed my hair in the shower because my balance wasn’t good enough to stand while my eyes were closed. Then came a day that I inadvertently noticed that I didn’t have to do that any more. It was a small thing, and I passed it off as being just a slight variation in that symptoms. But when I noticed it again a few days later, I wondered if it was LDN. Before long I was noticing little things all over the place. Nothing earth shaking, but one by one I started to realize that it couldn’t just be my imagination. I don’t think I realized how early the changes started until I viewed it all in perspective – hindsight. I hear it is always 20/20. Anyway, that is how it happened to me.

I think this is hard to track and different for everyone. For me, it's more like Marion's experience. Every once in a while I catch myself doing things that I used to not be able to do. The main thing for me is more energy. I still have slow days here and there, and I still get exhausted when I overdo it...but I am keeping up with things sooo much better then I was before.

I have also noticed that I am able to manage my stress better.

Be patient and realistically look back every once in a while to see what is different.

Everyone responds differently. I noticed more energy and stamina. I also noticed better balance. It wasn't immediate....and you sort of have to look back over several weeks to see what's improved.

Good morning LDN group.

I started LDN about a month ago and am currently doing 20 mg at bedtime.

I have observed that my back and neck pain (spasticity)has decreased and I seem to have more energy. I haven't noticed any improvement with walking yet but am holding out hope.

I have experienced no side effects at all except for the dreams which I enjoy.

I hope you meant 2mg and not 20mg..:eek:

Congrats on the good report, so far. That's encouraging..:hug:

I know! I thought I'd read it wrong.....if I took 20 mg. I don't think I'd be able to walk! :eek:

I'm only on 1 and 1/2 for another week - then 3 for 3 weeks and then 4 and 1/2 forever more - I don't expect wonders but would certainly be grateful for some semblance of balance to return !! I lean over to pick up something and am soon on the floor clutching whatever it was I was grabbing for !!

Yeah sorry 2mg not 20. But so far so good.