Submitted by Sojourner on Sat, 2006-01-07 13:56

I want to begin this blog by thanking everyone who has helped my family to gather the information that we felt was necessary to begin this process. You are truly some amazing people, trailblazing and courageous! A bit of background. It is my husband who has MS and he was diagnosed in May 2004 at the age of 40. Prior to his diagnosis and only with hindsight, we agreed that he had minor symtoms for about 10 years prior. They were the usual ones-occassional color changes in one eye, floating black spots when we jogged and minor numbness in one side of one hand. Again, all were transient and events that did not grab our attention at the time.After a sinus infection that would not quit and a course of abx and oral steroids, my husband was referred to an ENT. By this time he had developed a strange feeling in his face which was accompanied by a euphoric feeling that came and went rather regularly. This prompted the ENT to comment that this sounded neurological and referred Jim for an MRI. The rest is history, the MRI showed multiple lesions consistent with MS, a spinal tap was performed (we still don't know what it revealed because the neuro said it was "negative" which meant Jim must have MS) and we were given a choice of CRABS. Jim has been doing fine. He adjusted to the Avonex shots nicely and we accepted our predicament with little help from anyone. Soldiers marching onward. I began to investigate as much about MS as possible and in short order became Jim's offical albeit free "MS Consultant."  I began him on a supplement regimen that included Omega 3's, ALA, NAC, D, E and Selenium. Interestingly, the Avonex never made Jim fell better but he felt improvement when starting the supplements. Most notably with the fish oil and NAC (600 mg per day). To date, Jim has not had another exacerbation and because of his occupation is possibly the most MRI'd person outside of any clinical trial. The first films while Jim was on Avonex(with no supplements) showed increased enhanced lesions. Later, after being on supplements awhile there was no change, and finally an MRI taken in August 2005 (Jim was on tysabri for 3 months) showed no new and less old lessions. Hard to say what helped, but if one believes the trial results it was probably the Tysabri. He must have another MRI in March (Yay!)After much research on my own, which includes both this site and the thisisms site, we have decided to be proactive positive people who take control of our own lives. Through all of this, we have learned how little is known about this disease .At this point I am not certain what causes MS, but we feel that the minimal risk that these antibiotics pose is well worth a trial. We are committed to this endeavor and will see it through.Here's what we are doing:Jim began the adjunct regimen appox. two weeks ago (remember, he was already taking most of it). He began doxy 200mg perday on Jan 6th. If everything precedes according to plan, in two weeks we will add Azithro, 3 x per week. Later the flagyl. I am committed to keeping a journal of this experience to have for ourselves and to also share. Your stories have helped immeasurably and I want to be able to add to them. To be as objective as we can, Jim and I have decided that I will not tell him of all the side effects of the treatment for CPn. I will share what I know when he has these effects. In a way it is fun and this has already begun. When we upped his dose of NAC he felt funny movement around his sinuses and a flu-like feeling. I was able to confirm this reaction for him. The next night he had aching in his joints and feeling of malaise, again I was able to confirm this. Although we have just begun, today Jim felt very fatigued after lunch-in a way he has not felt for a long time. I told him it could be coincidence but it could also be from starting the doxy. Interestingly enough, the fatigue passed incredibly quickly (15 minutes and he was up being his incredibly busy self again!) I will post to this blog when events warrant, wish us luck and we're off!sojourner

Sojourner (aka Lexy,[!]), what an excellent way to go about it!  David and I were both very impressed.  I find it very difficult when posting not to put ideas into people's heads.  The best thing is for them to mention something first.  It is incredibly difficult, but on a one to one basis you should find it somewhat easier.  Best of luck to you both!SarahImage removed.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Lexy, thanks for update. We have sometimes 100 guests here. I am sure they all will benefit. Wish you the best.
Barbara

Cured of multiple sclerosis, stopped the Wheldon's protocol in Nov,2008. Use only LDN.