This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all.

On Thursday I got my MRI results. I had a brain and an upper spinal cord MRI last Monday. No new lesions in my spinal cord, 1 lesion went away from my brain, 1 has shrunk and is fading away and 1 new lesion, but I am sure it appeared while I was not on LDN, because the last time I had had a brain MRI was two years ago, March 2004.

A year ago I started having a constant decrease in my condition. A couple of months after starting LDN my condition started improving very very slowly. The fact that the MRI was not that loaded amazed me. I should have had one just before starting LDN. It would be awful!

Will the "LDN effect" last for many years?
How long have you been on LDN for?

I know that the first MSer on LDN is now in her 18-19th year. But what is the average period that LDN works for?

Thank you all.

Stavros

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If God created MS, Devil would create Rebif to treat it!

If you wish to see the lenght of time people with MS have used LDN, and the results on symptoms and progression for a group of 287, see the survey I conducted at http://LDNers.org

I've been on LDN since Feb 2004 with very good results, also detailed at the site. But I am just an annecdote, which is why I did the survey.

SammyJo

Sammyjo,
I saw, from your site that you are now on ABX (in addition to LDN). Could you possibly explain why, since you apparently did very well on LDN alone. And, do you know if any of the ABX dr's have commented on the dual treatment/possible synergy. There is another person (cureorbust) on this site doing both at the same time as well.
Thanks.
LJM

The thing that confuses me is that there is a lot of studies that find a reduction in lesions and stuff on MRI's, but no changes in disability.

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Gilenya, 80mg Lipitor, Inosine, Minocycline, Suppliments galore.
3 CCSVI treatments, no major noteable benefits thus far.

That's because there is little or no correlation between Type 2 MRI's and disability symptoms. Yet, in most of the past clinical trials, you will see that one measurement they use is how many lesions show up on the MRIs!

You can have a couple of lesions and severe disability or a lot of lesions and mild disability. A lot depends on the location of the lesions.

The best measurement for MS is the EDSS disability scale. Don't be too concerned about the lesions since they come and go....it's how you feel and the level of disability that counts.

Harry

I'm 90% better after LDN but I want 100% recovery from MS! The MD's experienced with abx treatment suspect LDN has an antibacterial effect of its own. Evidence is emerging that it ups the body's killer cells, similar effect of that new (expensive) drug Daclizumab that surprised the researchers, MSers got better as their killer cells went up. So I may have been whacking down the cpn for 2 yrs, got much better, but still have a few MS symptoms left. You can track my experience so far with the link I have to my blog at CPn Help.org from http://ldners.org/mscause.htm
SammyJo

SammyJo,



I agree that a dysfunction in the killer T cells (T Reg cells) may be an important aspect of this disease. At the EBV / MS think tank I attended, the point was made that once infected with EBV you are infected for life. It is the killer T cells that keep the EBV under control (I imagine they do the same for other viruses and bacteria etc). If the T Reg cells are disturbed in some way they cannot do their job and the virus or bacteria can take hold leading to the death of oligodendrocytes and the involvement of the immune system which causes more damage. Just a theory - but it will be interesting to see how the Dacluzimab pans out.

Ian

Ian,
What is this MS think tank? Are they truly thinking ousdie of the box and examining all the research, even that which diverges from the old line autoimmune dogma? Now that would be a breath of fresh air!