Son's progress with LDN

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

Son's progress with LDN

Postby CCmom » Wed Jul 14, 2004 10:32 am

My 16 year old son started LDN over 3 weeks ago. He did not have any complaints, symptoms or outward signs of MS before starting it, so it's subtle changes we are seeing in him, but they are good ones, none-the-less.

He is sleeping really well, better than he has since before his probable diagnosis 3 years ago. He has an abundance of energy, and an overwhelming over-all sense of well being. And, his heat tolerance has improve immensely, which is an added bonus in the Ky. heat and humidity.

The child has been going non stop, something he hasn't been able to do for over 3 years. He says the best way to describe it is to say that he feels like his "old self" again, for the first time since before his illness. Of course, I have to keep in mind that the Rebif that he was using before caused really severe depression for him, so some of this may be attributed to the absence of the Rebif, but we are thrilled with the results so far. He has not had any stiffness at 3 mg. at all. The doctor will determine this week whether to increase the dosage or not.

He laughingly told me last night that he was covered with cuts and bruises because of his new medicine. When I questioned this theory further, I discovered that he feels he is able to do things that he hasn't been able to do in the past 3 years, but he just isn't very good at them anymore, so he seems to hit the ground alot! (He inflicted these injuries by sliding into home base and jumping down from a tree he felt compelled to climb and landing on a piece of glass.) I laughed and then I cried. I do alot of that these days!

Anyway, just wanted to give everyone an update. I hope all is going well for each of you! Take care!

Kim
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Postby Arron » Wed Jul 14, 2004 11:04 am

Great update Kim. Hope to see more of the same in the coming weeks and months!
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Postby mscaregiver » Wed Jul 14, 2004 12:06 pm

That is wonderful Kim, I am so glad he is having lots to smile about , and that, as we know, puts a smile on moms face..

Philip
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Postby Daunted » Wed Jul 14, 2004 3:19 pm

I'm glad to hear your son is doing so well. I'm sure you're just glad he's doing better- who cares whether it is the cessation of Rebif or the addition of LDN, really.

Having said that, it would have been most interesting to have him (or anyone switching) on nothing for a while before starting LDN, as side effects from the other drugs can definitely impair quality of life. The scientist in me wants to know!

I just mention this because I, myself, was mistaken in attributing some improvement to LDN. I took it for several months, saw no real improvement, and discontinued it. Two days later I developed bladder problems. I started the LDN back up and they went away.

I was about to become a "believer" when I mentioned it to my doctor. He questioned me and quickly traced the bladder problems to, believe it or not, taking too many tablets of Immodium AD. (I didn't know it could do that!). I experimented by taking a bunch at once to see if it would repeat the same effect, and it did.

Turns out it wasn't the LDN at all! Even a jaded cynic like me was almost converted into a believer by happenstance!

Let me be clear, the #1 point, above all, is that your son is doing better, and that's great. But since we don't have good trials on LDN, I hope you'll remain open to mainstream treatments- in particular, I am thinking of Antegren, which may be available pretty soon.

And, come to think of it, I at least can't think of any reason why LDN and Antegren couldn't be taken at the same time. I'm not a doctor, though.

Anyway, bottom line, I'm glad to hear your son is doing well.
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Postby Cathy » Fri Jan 28, 2005 10:25 am

So glad to hear your son has improved. I posted this under Boston Cure-thought I should post here ase well. Article about why clinical trials should be done on LDN.

http://www.bostoncure.org/msresources/l ... interviews
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