No News is Good News

So far, things are the same, but I wanted to keep updating our blog, so a little boring I guess! But, in my opinion, and in any case with MS, no news is good news. Ed has been off of Rebif for 3 weeks (and been on LDN) and has since only felt better. Time will tell, of course, whether there is any further progression (or if it stops) and whether or not he regains anything that has been lost so far.

Ed has been feeling really good, more energy, and suprisingly - so far - no side-effects from coming off of the rebif. His legs have been a lot stronger (while they were feeling really weak in the last few weeks on rebif). He has felt more energy too. His leg spasticity increased when he went up to 3mg of LDN (he started on 1.5 for a week), though that has also subsided. He is avidly doing the water cure, which has made a huge difference, and has strange, but manageable, dreams after he started on the LDN....

Ed has been on LDN for 1 1/2 weeks and off Rebif for 1 week. So far so good. He started the WC over two weeks ago.

LDN, the Water Cure and Multiple Sclerosis

My husband, Ed, suffered an acute Multiple Sclerosis attack in 2005 (at the age of 27), 4 months after our son was born, which left him paralyzed from the waist down. He received a firm diagnosis a few months later. While it appears to run in his family, we were told by neurologists at the Mayo Clinic in Minnesota that MS is NOT known to be hereditary, though I have heard otherwise. For example, a recent article published in Forbes Magazine claims that there are "two genes associated with autoimmune disorders, HLA-DR2 and HLA-DR4..." which are "found in 65% to 75% of all MS patients..." There are many theories on MS, but it seemed to us that the origins of this enigmatic disease will only be found at the end of a rainbow...

So, here we are, obviously not doctors, but people simply curious to find a solution other than the options that he has been given. After a few years on Rebif, and a few relapses, Ed informed me that his treatments were not working any longer. He was tired, and I knew that his lack of control over the situation was ultimately frustrating and saddening him. We had really tried a lot of things. As previously mentioned, we sat at the Mayo Clinic for several days only to be told that we should continue to "maintain" his state, meaning no more progression, and yet we still had no solution for that except pure chance and hope (faith even?)....

We tried acupuncture, vitamins/supplements, diets, reiki and even colonic-irrigation. (I was sooo ready to accept this procedure as an all encompassing solution to every disease/problem, that it would work miracles as people have claimed online, but unfortunately we were left $200 lighter with an uncomfortable experience and a silent car ride home.)

While we had done some previous research on Low Dose Naltrexone, we knew that he could not be on Rebif at the same time; the two drugs would counteract each other. The transition period would possibly leave him at risk for a major relapse. Months later though, it no longer seemed to matter. The current treatments were not working. I finally sat down and did more research on LDN, as well as "The Water Cure," which I had heard about several years ago. The testimonies seemed unreal. It appeared that everyone (and I mean every single testimony anywhere online) made claims that Naltrexone, FDA approved to treat heroin addiction - in low-doses - stops the progression of multiple sclerosis and, in many cases, helps sufferers regain lost functioning.

[If you have MS or another disease and are interested in LDN or the water cure, I recommend that you do your research and decide for yourself. This blog has two links on the side bar to start you out.]

It was difficult to find someone to prescribe LDN - though it has no side effects and apparently has a high success rate in halting the progression of MS - but we definitely found a doctor who is very enthusiastic. Neither one of his neurologists would get involved. He first began the 'Water Cure' and started the LDN once the prescription arrived in the mail.

Over the next few months/years/decades we will post his experiences with LDN and the "Water Cure." I strongly encourage you to visit the websites and decided for yourself if either one is right for you. While we found great information online about MS and LDN, we have not found anyone tracking their experience. MS is such a day to day thing, uncertain and scary as well, that we thought it would be a good idea to walk others through Ed's transitions by posting updates on a regular basis.

-Bridget Freeland