Just a quick update. I am half way through a 2 week break from abxi. Prior to this I took 600mg of Rifampicin daily for a little over 2 weeks and in that time a 5 day Flagyli pulse. I had no reaction to these abxi, so as I am on holiday I decided this was a good time to start intermittent. Nothing to report so far, feel fine.

I am beginning to think about moving from continuous to intermittent protocol. I took a Falgyl pulse last week and the primary impact was to make me feel a bit morose and I wonder if this is more an effect of the Flagyli alone. I am generally extremely well, and in some ways I fell better than I can remember. For example I cycle around my town, which takes me about 25 minutes (non stop, quite fast), and I find this easy but I am sure that prior to my MSi dx it would have felt like much harder work, and it is not really about fitness, it is more that I am free of some sense of lethargy that I used to live with a fairly permanent basis (unknowingly).

I am just completing my 12th pulse today and until yesterday I thought that it was not having any noticeable effect, but yesterday and very much today I have been slammed by fatigue.

Outside of this fatigue I have been feeling very good, lots of energy; I would just love to have my leg back fully, that hasn't changed one iota. Of course it could well be that over time I will have improvements to my leg, I don't know

Malcolm

I have had a 2nd MRI scan. The first was in Aug 06, a couple of weeks after having my first obvious MSi problem. Prior to that I had experienced right arm weakness, that I had thought was due to RSI, but was probably MS related.

My scan results second time round are basically the same (no significant alterations and no significant new lesions). This would suggest that the lesions on my scan are fairly old (as they are unchanged), but it provokes questions in me.

Surely my attack in Aug 06 (after a severe summer flu, the primary symptom was exhaustion), would have been the result of new lesions?

If I didn't develop any new lesions in summer 06, what caused my MS symptoms?

I worry a little about making a positive post as in the past they have been followed by me falling off my cloud, but... the last couple of weeks I have been feeling fantastic. I am much stronger and playing tennis with real vigour.

I am having a second MRI scan next Tuesday, at the same hospital, with the same machine and the same radiologist. I conscious that I am setting myself up, but I am hopeful of an improved scan. I do believe that I am much better and getting better, so I think my scan will reflect that.

Malcolm

I am now into my 7th pulse and it is going very well. Slight stomach unsettling, but not much.

It is really amazing how much energy I have. My wife said last night that she keeps marvelling at how well I look, and this is even though I am spending long hours at my computer. I have really moved on from the intense fatigue I experienced at the outset of this program, I also seemed to have lost my huge appetite for sweets (I have stopped buying them). So I feel that I have really progressed well.

I have spent most of this week at home as my wife and daughter (15) are away skiing and I am here with my son (5). I was hoping to get some work done, but my son has been ill and missed most of this week at school. So we have been moping around at home and although he is now feeling better I am feeling ill!

I am feeling a bit miserable because although I have been keeping myself very upbeat about my illness (denial I think the last neuro would call it), the fact is that my life has been hugely affected by it. I am (was) a very physical person and that is grinding to a halt.

I finished my fourth Flagyli pulse on Friday 22nd Nov, a 5 day one this time. What I have really noticed this time is how depressed I have been. Comparing today to last Saturday I realize how low I have sunk. Last Saturday I was feeling great, very buoyant and self assured, whereas this Saturday I have been feeling low and anxious, which has been with me all week.

Knowing that it is bought on by the Flagyl is reassuring and that it will pass...

I finished my third pulse yesterday, went for 4 days this time. It didn't affect me at all while taking it, but today my legs felt weak playing tennis. On the whole though I am having very little difficulty taking the full complement of abxi. Sitting here I am aware that my scalp is very itchy, I don't know if this is CAPi related. I also had diarrhea for a couple of days.

Everything is looking very good: my appetite for work is greater than it has been since before I can remember, I have loads of energy, my tennis at times is better than it has ever been before, I am generally feeling great and very optimistic. I have become quite attached to drinking Powerade a it really refreshes me!

I have just completed (yesterday, Tuesday) my 2nd Flagyli pulse, this time for 2 days (first one for one day). Hasn't been particularly bad, generally I felt (and feel) a little unwell and fatigued, but not too bad.

Overall I have experienced some big improvements since starting CAPi. I can work all day without needing naps and my movement has improved. I played tennis on Saturday and Sunday. On the Saturday I was feeling great and playing the best tennis in ages and 2 people told me how well I was playing. On Sunday I wasn't feeling so good, my leg felt stiff and my play was not very good. So I feel that my progress is very much upward, with some amazing days scattered around.

My last blog post was title 'Smooth Sailing'... I was feeling good at the time, but since I have been up and down and all over the place. Sometimes I feel great and full of optimism (I ran for 25 minutes on Monday, a record) and at other times I am very fatigued, feeling low and a little desperate.

Today I am taking my first Flagyli dose, I plan to take 3x400mg pills today, one at each meal, and see how it goes. I am a little apprehensive as I have so much to accomplish work wise.

Malcolm

This a quick update of my progress. I am on the full complement of abxi and supplementsi without the flagyli. I have found that I have some stomach pain on days that I take Azi, and my gut feels churned up, I also have sneezing fits and a running nose periodically, but all in all, taking the abxi is not a big problem for me.

And I am starting to feel some significant benefits. I managed to play 2 hours of tennis on Saturday and rather than deteriorate my game improved as I played. Also I spent a couple of hours with my son pruning a 15ft hedge. Not long ago I just wouldn't have the stamina for either the tennis or the garden work, but my energy levels seem to be fully back to normal (at the moment).

Malcolm

I had my second meeting with my Doctor. He was unable to prescribe Roxithromycin as it was not on his list and he said, therefore illegal to prescribe. So I have a months supply of Azithromycin.

He warned me that I might experience problems with diarrhea and that this could get serious, in which case I should stop the abxs and come back to see him (he said I would know if I was having a problem). He mentioned entercolitis and toxic megacolon. This is quite worrying as the Doxi appears to be causing me some problems already.

Has anyone had colitis and is there any supplement that can reduce the risk of such complications?

I went to see my doctor today and he has agreed to support me in following the CAPi. I will start Doxycyclene today with the intention to add Azithromycin at the end of August when I return from a holiday, all things going well that is.

So far I have been taking 600mg of NACi twice a day for about 3 weeks, the resultant NAC flu (runny nose, sore throught, chest infection..) has now cleared up, so I am ready to start the Abxi.