It's been a while since my last entry, but I've been so busy trying to keep a normal life together. My progress through the last few pulses gave nothing very positive to report. Each pulse was accompanied by broadly similar effects - an upset stomach, an increase in the burning feet and restless leg symptoms, which tapered off towards the second week, and serious fatigue, which was always present. In fact I seem to have slept for most of the previous four pulses, perhaps I needed it.

Well pulse 4 was an experience I wouldn't want to repeat!  This was my first pulse at the full dosage and the effects made that obvious.  On the first day, each dose was followed by a short period of detatchment with a return to my usual levels of functioning.  The night was a completely different story.  My feet and calves felt as though they were being roasted and had a sensation like ants crawling under the skin.  This was accompanied by bad restlessness.  These symptoms improved towards the fifth day, gradually approaching what is my normality.

 The week prior to the pulse was an improvement in terms of walking, with more flexibility in my joints and thus stride.  Unfortunately there was no decrease in the general level of fatigue- but I expected that.

The pulse itself passed with no really major upsets.  I increased the dose by 1 tab per day over the dosage of the last pulse, which means the next pulse will be at the max dose.

This time the negative side of the pulse was a quite nasty pain in my left knee which I treated with Ibruprofen, this kept it under control.  I can't understand why I should have pain here since I never had any injury or trouble with the knee.

It's been a while since I've posted anything but I've been so busy trying to deal with the rest of life. This effort has left me without the resources to sit and write .
After my first pulse, I felt marginally better for a week, less joint pain, less woollyminded and a little more energy. During the following week most of the old symptoms crept back and there seemed to be very little improvement. It left me wodering whether this was working at all. My right leg still turned wooden when either cold or tired and my vision sank below the previous improved level.

Since my last entry, which seems ages ago, it's been a rather rocky path. I had one good week with an all round decrease in symptoms and then things went downhill. The next week I started a bout of shingles, this made me take a big step backwards. I spent the next week recovering only to be hit by a nasty cold. So after this all my symptoms reverted to almost the state before the CAPi. The only things I held onto were better flexibility in my left foot and occasionaly better vision.

Saturday has now devolved into the day I take stock of my progress and make any changes. I've now reached the full dosage for the abxi and increased to 1800mg for NACi. I have no major effects to report, is that good - is it bad - toss for it. However I seem to be trying to work my way through the entire gamut of minor unpleasant effects - tingling feet and hands, restless left leg, muscle pain, small rash on chest, some facial flushing, upset stomach and high pitched ringing in my ears - par for the course. If it wasn't for this site, I'd have myself put down.

Well I've now graduated to the full protocol. It's been six weeks and I can report no really unpleasant effects except depression, which has occurred after the abxi.

I think I've had a reasonable experience so far because I'm trying to take things steadily and increase things gradually. Something I have discovered is that it takes me a week to tolerate each step.

I've been prompted to write this entry because of what to me is a significant step. I have only been taking the abxi for 2 wks and already there has been a decrease in the major spasms in my right leg, my overall pain has decreased and my floppy right foot has stopped flapping like a seal's flipper all the time, it now rolls as I walk, at least until I tire.

Well I took my first abxi today, (< that makes it sound like my first party>) 100 mg Doxyi. This came about because I was fortunate enough to have seen DW last Thursday and he gave me my initial prescription. I would like to thank him here for being kind enough to give his time to see me.

The message I have gained from reading the posts on the site has been one of taking things steadily, so I have been doing this and will continue to do so, despite a wish to push faster, which I know I have to resist. I have spent 4 weeks building the NACi to the 1200mg level and taking what feels like a shovelful of supplementsi. This appears to have been the way to do it because although I have felt the effects, they have not been too unpleasant.

I've received a letter from my consultant and the content is just as expected. This was sent to my doctor with a copy to me.

This is a quote -

"The suggested treatment with abxi is untrialed and unproven. There has been one small study recently using Minocyclin (one of the abxi mentioned). This was a negative study in RRMSi performed by a group in Canada.

Despite this I would have to say there is no licensed treatment for prog. MS and my view of unconventional treatments is that generally, provided they're safe, I wouldn't strongly object if this is something (he) wishes to try and you are happy to prescribe."

First off - hello y'all, what an amazing response, you've just blown me away. I never thought there would be such feedback. I'm glad the idea of the foil hat tickled you, we could all do with a little humour, but I felt so patronised by my GP's attitude. He treated me like a crank!

I have been taking the NACi for 3 days and have the predicted vague flu-like symptoms. However I was already experiencing similar effects from a recent relapse, this was followed by a viral? type episode. So I cannot attribute my feelings with total certainty.

I have had no feedback from the neurologist and it has now been a week. I think I need to give it a little while longer but I will keep you posted.

My wife found this site a week ago whilst looking for info on fighting a series of viral/bacterial? infectionsi I have had over the last several years. When I read about the Cpni concept it was definitely a lightbulb moment.

I have become sceptical, over the fifteen year course of my MSi, about potential treatments. However, reading the content of this site struck a chord within me. Somehow I have always felt that this illness did not arrive out of nowhere and ambush me at random. My personal belief has been that there was an underlying cause to MS. However the medical profession and most of the MS community with whom I have had contact just seemed to shrug their shoulders.