Malcolm's blog

Deterioration

Submitted by Malcolm on Mon, 2010-07-19 12:42

I have decided to restart abx. 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.

Caffeine experiment

Submitted by Malcolm on Thu, 2010-01-14 09:04

On Monday 4th I decided to try the experimental approach of Caffeine with abx. I have been taking daily 200mg caffeine, 200 mg Doxy 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 abx (inc 5 days of Flagyl) 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!

Submitted by Malcolm on Wed, 2009-08-26 09:46

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 abx. With regards my condition, I made huge mental gains on the abx, 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

Submitted by Malcolm on Tue, 2008-11-18 09:19

As some may remember I decided to go onto intermittent protocol in August after one full year of abx and a few months of no reaction to flagyl 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

Submitted by Malcolm on Thu, 2008-08-21 11:12

Just a quick update. I am half way through a 2 week break from abx. Prior to this I took 600mg of Rifampicin daily for a little over 2 weeks and in that time a 5 day Flagyl pulse. I had no reaction to these abx, 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?

Submitted by Malcolm on Mon, 2008-07-21 04:48

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 Flagyl 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 MS 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).

12 Pulse, almost a year in

Submitted by Malcolm on Mon, 2008-06-16 13:03

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

Submitted by Malcolm on Wed, 2008-04-30 04:09

I have had a 2nd MRI scan. The first was in Aug 06, a couple of weeks after having my first obvious MS 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!

Submitted by Malcolm on Tue, 2008-04-15 09:07

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