Malcolm's blog

Deterioration

I have decided to restart abxi. I don't hold out much hope that they will help me, but I don't see any alternatives.

I woke up at the end of February with a tingling sensation, mainly down my right leg. This has slowly turned into a numbness in both legs and both hands. My walking is very fragile and I can manage a few minutes at most, as I walk I start to lose all coordination in my legs/feet. Also as I type and use my computer, my fingers start to lose coordination.

Intermittent vrs Full time abx

I have never understood the big difference between intermittent and full time abxi<i<. I like many other here went intermittent when the Flagyli<i< pulses stop having any impact on me.

Caffeine experiment

On Monday 4th I decided to try the experimental approach of Caffeine with abxi. I have been taking daily 200mg caffeine, 200 mg Doxyi and 250mg Azith (every other day). I was planning to do this for 2 weeks, and continue doing 2 week pulses every month in lieu of 2 week pulses of abxi (inc 5 days of Flagyli) as per Wheldon protocol.

 My monthly Flagyl pulses have not been having much effect, which is why I wanted to try the caffeine combination. The caffeine is certainly effecting me more and I am considering whether to take a break after 2 weeks or just plough on until the 'effect' becomes negligible.

I would be interested to hear from anyone taking caffeine and abx how they are approaching this.

What gives!

Hi Guys, it has been a while since I last posted. So as an update.... I was diagnosed with Multiple Sclerosis in Aug 2006 after an MRI scan prompted by difficulty in walking.

I started the Wheldon protocol in Aug 2007. I was full-time for just over one year and then I went intermittent. I have continued with intermittent with no problems and no reactions to the abxi. With regards my condition, I made huge mental gains on the abxi, but my walking issue has remained much the same. It is not very bad in that I can do most things, the hardest activity is walking. I can walk perfectly normally for about 30-40 minutes and then I start to have problems moving my right leg and lifting my right foot.

Quandary

As some may remember I decided to go onto intermittent protocol in August after one full year of abxi and a few months of no reaction to flagyli pulses. Everything has been going swimming well until my last flagyl pulse that finished last week. This pulse produced a reaction (it would seem) that started with a mild numb feeling, particularly in my tongue. My taste buds were affected with everything tasting medicinal. Then I woke up one morning last week and found I could not focus my eyes properly. This problem is most obvious when I try to play tennis as I can't track the ball properly and I miss hit most shots.

Year in update

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.

Time to go intermittent?

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 dxi 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).

12 Pulse, almost a year in

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

2nd MRI scan results in

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?

Feeling great!

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

7th Pulse

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.

Feeling a bit low today

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.

5th Flagyl Post

My 5th Pulse from 17th to 21st December. Not much to report, a fairly easy pulse, though I am left a little jaded and stiff.

Latest Flagyl update

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...

3rd Flagyl Pulse

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!

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