How we all doing on LDN?

Arron · Posted: Thu Mar 17, 2005 5:12 pm Post subject:

great post, Kim. Thank you for sharing your story and we all wish your son strength and good health.
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CCmom · Family Elder Joined: Apr 26, 2004 Posts: 118

Thanks, Arron. I joined the large LDN yahoo group when I first started researching LDN for Colby. I slowly noted that members were disappearing right and left, so I determined to stay in contact with many of the "old timers".

Some left for great reasons...They felt so good that they didn't feel the need for the support groups as much anymore. But most left because LDN did not work for them.

We're all looking for that miracle. From the first few months with Colby on it, I truly thought I might have found it. And I wouldn't trade anything for those few months reprieve from these injections.

Now that he's using the Copaxone along with it, I have hopes that they will compliment each other, and that he will have even more time feeling like a teenager should feel. But I lost some of my confidence along the way.

When he started having problems on the LDN, many people approached me and told me that it was normal, and that as long as they weren't "new" symptoms, I shouldn't be concerned. Well, this child has been paralyzed by this disease in the past, and I certainly wasn't going to consider it as "no progression" if he hit that point again.

He's doing well, though, and I want everyone to know that. It could be much much worse. It's hard enough to be a teenager, but add in the factor that you might fall in front of all your peers or that you can't look at them straight on because your eyes are jumping all over everywhere and it's a whole different world.

Thanks again, for your warm wishes and concern!

Kim
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Kim R.

PhireX · Family Member Joined: Jan 20, 2005 Posts: 32

I do dislike how the effectiveness of it is thrown around, I've heard on the LDN Yahoo forum things like "Stop the Rebif, the LDN will work better" etc and I really dont know what grounds that's based on. It's one thing to take it yourself and risk your own health deteriorating by taking something unproven, but another to tell someone that it definately works and they need to stop their interferon etc. Honestly, if Rebif didnt make me go psycho I'd probably have never found out about LDN and I'd be on Rebif, that wouldnt bother me.

I have weighed up the risks and there dont seem to be any risks for LDN, but I am taking Copaxone as a backup and due to our government pharmacuticals scheme, it actually costs me similar as LDN ($28.60 AU for copaxone/ Month, compared to $26.66 for LDN)

Tricia · Newbie Joined: Oct 06, 2005 Posts: 1

I have been taking 4.5 m LDN since August 27. I also take Avonex and haven't really noticed any changes but then, I sometimes wonder if I would notice anything short of just a normal walk. I currently walk with a cane & wheelchair for long distances. It's hard to be aware of day to day changes I guess but still plan on resuming LDN just because I like the thought of heavy artillary against this disease! Mad

I'm not comfortable with the thought of stopping Avonex just because I really do put some weight on medical advances and have some faith in my neuro. I've tried many things through the years including years of a "natural" approach and still come back to the basic medical insight. Who knows, LDN gives us hope anyway.

CCmom · Family Elder Joined: Apr 26, 2004 Posts: 118

My good friend, Cherie just gave me a nudge and told me to get my butt back here and fill you guys in. I have really drifted away from the forums over the past few months, but not for bad reasons! Everyone here has helped me so much in the past, and I never should have left you hanging like this!

Colby is doing fantastic! He's been using a combo of LDN 3 mg nightly and Copaxone every other day since spring, and he's really doing well. We've only had one incident of numbness and ON, and it was very brief, and induced by stress of a car accident, which also caused him to miss his LDN one night. Rolling Eyes

Otherwise, he's enjoying his senior year of high school with a cute little girl hanging onto his arm and his every word! He looks great, and feels great.

Hope you are all doing equally well!

Kim
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Kim R.

nathankennard · Newbie Joined: Nov 19, 2004 Posts: 3 Location: Utah, USA

I stopped taking copaxone at the end of May and began LDN exclusively at the end of June. Since beginning LDN, I have lost 10 pounds, my hair and fingernails seem to be growing faster, and I have experienced very vivid dreams quite regularly.

I can also report that I have been in very good spirits not least because of the very modest cost of LDN. After doing 4.5 mg/night compounded for a month, I have been doing 'the liquid method' since mid July. I much prefer the liquid method for convenience, cost and the capability of fine tuning the dosage. I paid just $23.00 USD for 30x50mg pills which at 4.5mg/night is an 11 month supply.

LarryLDN · Posted: Sun Jul 30, 2006 8:08 am Post subject:

Thought I'd check in and say HI. Still going great on LDN... I'm in the middle of camping trips at the moment. Couldn't keep up with so many forums, so I haven't been here in a while.

http://www.larrygc.com/mystory still redirects to my ezboard journaling of my early days on LDN and some followups.

Hope all are doing well Smile

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-- LarryGC/LarryLDN http://www.larrygc.com/ms
-- My LDN journal http://www.larrygc.com/mystory

nathankennard · Newbie Joined: Nov 19, 2004 Posts: 3 Location: Utah, USA

I have now been on LDN for 13 months. I had an MRI at 8 months which showed all previous actively enhancing lesions no longer active. A tiny new one showed up, but besides the encouraging MRI, I have fealt great and had no depression or exacerbations.
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Nathan Kennard
1319 Buccaneer Dr
Salt Lake City, UT 84116
801-951-1392
www.nathankennard.com

wineman · Newbie Joined: Apr 24, 2006 Posts: 1

Hi Everybody!

I just quit taking LDN after being on a 4.5mg dose for 7 months. I experienced no help whatsoever. I don't have any MRI proof to say LDN didn't work at all, but I feel I've gotten worse. I have PPMS and it appears it's progressing at a slow rate. I'm going back to Rebif. Rebif didn't seem to help, but it may have slowed the progression afterall.

I guess I was hoping for something better. I guess we all continue to wait. Rolling Eyes

gibbledygook · Posted: Mon Oct 02, 2006 2:25 am Post subject:

How about trying Statins or antibiotics? They seem to be the other relatively cheap alternatives which are widely prescribed. My mother was never given anything and she just progressed, progressed, progressed. So her example makes me inclined to try stuff. Confused

I tried the LDN for a week after which I could hardly walk at all as my leg went from moderate stiff to extreme stiff! So I didn't carry on.

Andy · Posted: Sun Oct 29, 2006 4:40 pm Post subject: LDN

Hi all. I've not been on here for a while but I have just got to 30 months of 3mg LDN and have no intension of stopping.
Did have a bit of cramp in both leg calf musles every night fo about 9 months. Somebody suggested I have acupuncture, this was 6weeks ago and from the very first day I have not had cramp......I would not have believed it but it was well worth the money.
Cool

superman · Family Member Joined: Jan 23, 2007 Posts: 53

Hello everybody
i'm new on this forum which i found is really better than the others i was on in France so glad to join you.
Also as a new ldn user, i thought my own experience could be of some interest for you
I have no side effects while on LDN treatment for Multiple Sclerosis.

I am 28 years old

I am male

I have RR MS for diagnosed 10/96

I started LDN 01/13/07

I take 3mg's per night

I obtained my LDN(Revia 50mg) from Meds4yourhealth.com.

The filler used is Cod liver oil 1000 mg capsules(i empty half of them and inject my ldn in it)

My doctor IS Dr. Assouad, Paris, France

I have the following known allergies: none

I am also taking the following medicines at the time:
Copaxone 1ml/subQ daily.

My side effects with LDN are none.

Will be staying on LDN and decide whether i keep on using it once i'll have finished all my Revia and depending on the results of ldn.

At the moment my EDSS score is about 1. But when i walk more than 1 milee, my right to hobble, whereas two years ago i could still run 30' without stopping.
Also 3 weeks ago i had a 5 days steroid(solumedrol 1mg/day) infusion treatment. Does this make the effect of ldn less effective?
If so when should i expect ldn to have some benefits for me Question

Thanks.
FFF

snackhand · Posted: Thu Jan 25, 2007 3:12 pm Post subject:

I started LDN february 2006.

First I was on 3 mg,now 3,5.

Last january I had a relapse(still recovering)

When I first started the LDN I noticed an improvement in my bladderfunction and my head fealt much clearer.

My MS dx is from 1997,first relapsing/remitting,now for about a year secundary progressive.

I"m intending to stay on LDN.

Annemarie

mamahawk · Family Member Joined: Dec 29, 2005 Posts: 65

I'm still on LDN - 4.5mg/night

I am also on the Wheldon CAP Protocol.

No exacerbations, no symptoms - all is well and I will continue on everything I am on.

superman · Family Member Joined: Jan 23, 2007 Posts: 53

Hi my monthly update for my LDN treatment
I have no side effects while on LDN treatment for Multiple Sclerosis.

I am 28 years old

I am male

I have RR MS for diagnosed 10/96

I started LDN 01/13/07

I take 3mg's per night

I obtained my LDN(Revia 50mg) from Meds4yourhealth.com.

The filler used is Revia mixed in purified water

My doctor IS Dr. Assouad, Paris, France

I have the following known allergies: none

I am also taking the following medicines at the time:
Copaxone 1ml/subQ daily.

My side effects with LDN are none.

Will be staying on LDN and decide whether i keep on using it once i'll have finished all my Revia and depending on the results of ldn.

At the moment my EDSS score is about 1. But when i walk more than 1 milee, my right leg begin to hobble, this has not changed since the beginning of my treatment.
So no real effects(positive or negative)
I am still looking for the great effects some experienced.
At least i do not have any new relapse, Laughing

:even though my life is not quiet(working as teacher, a bit of swimming....)
FFF