robertd's blog

Return to the Fight

I had to stop the CAPi some months ago as I was having severe bowel problems. I have now managed to regain a reasonable amount of control over the situation and I feel as if I could now restart the CAP. I'm not quite sure at what level to start, so I'll have to do a little trial and error. Towards the point I gave up, I felt as if I wasn't making any headway - even slipping backwards, but stopping has made me feel that I'm slipping faster so there seems to be no alternative.......keep on.

Robert

Help needed with abx

I haven't been on the site for quite a while as I've been trying to deal with other health issues and I've been trying to have some kind of life.  I have kept up with the CAPi faithfully but things still seem to be going downhill.  Just lately my supplier for abxi has for some reason become unreliable.  Can anybody mail me the details for a supplier who will ship to the uk.  I am afraid to try a period without the CAP as the abxi effects are still bad and I have no sense of any positive effect or not but will ceasing be even worse leading to further damage?  As you can see, I am very conflicted.  I really will be grateful for any replies.

Robert

MSi for 20yrs. CAP since Jul 07, NACi 2400mg, Doxyi 200mg daily, Azith 250 mg MWF, Flagyli for 4yrs.

High possibility of colon cancer - help!

Just presented with the likely symptoms of colon cancer.  I have been sticking religously to the protocol but have been absent from the site for quite a while, trying to get some life together.  Over the past couple of months, my condition went down rapidly, culminating last weekend with some nasty symptoms.  I am now waiting for the hostpital appointment .....and the tests.  I don't know how to deal with the progress of the protocol - any advice - do I try to continue or stop until treatment (if any) stops?

MS for 18yrs. CAPi since Jul 07, NACi 2400mg, Doxyi 200mg daily, Azith 250 mg MWF, Flagyli for 4yrs.

Pulse 28 just keeping on.

After all these pulses, it's disappointing to fing that I'm now feeling as though I'm going slowly downhill.  I know that how I feel could mostly be attributed to the toxic effects of die-off but I cannot seem to clear my system effectively.  I've tried the usual  methods but they all lock my transit solid and I end up bouncing between moppers and laxatives - not good!  I do now recognise the insidious hand of inflammationi in the decrease of my mobility but I cannot manage to get it down it to a manageable level.  Anyway, my small rant is over - back to the business of hanging in there.

Robert

Pulse 27 - still a rough ride

I've just finished the first half of pulse 27. This follows a very rough fortnight recovering from the last pulse. I had increased the last two half pulses to 4 days metroi per fortnight, with the addition of caffeine. This proved to be too much and I am still dealing with the high amount of die-off. Bearing this in mind, I have now reduced the pulse to 3 days. I have also increased all the methods of helping to deal with die-off and I intend to try psyllium and bentonite as I'm not clearing my system quickly enough. Unfortunately charcoal and chitosan seem to constipate me badly, hence the bentonite.

25 pulses and it seems to need a push

I realise that it's quite a while since I last posted but that's due to a couple of things. Firstly, I have been completely involved in trying to run as normal a life as I can and secondly I have been holding back, waiting in the hope of reporting something positive.  For the last several months progress seems to have halted.

In order to try to give things a push forward I have split the last three pulses into two fortnightly periods, taking three days of metroi in the first two and increasing to four in the last.  This has obviously increased the monthly intake of metro.  This does seem to have produced some benefits.  Stomach upset has decreased, my sleep has improved, I feel more positive and less depressed (which was a big problem) and my fatigue level has decreased.

#16 - not going well

One week past pulse 16 and things are not going well. I haven't written anything for a while as I have been hoping to report something positive - alas no such luck.

Pulse 10 - big step back!

After the hope and positivity of pulse 9, pulse 10 turned out to be a whole different ballgame. As the pulse was beginning, I began to show all the signs of a relapse. My condition had been deteriorating for several days before, but I thought that this was just the normal up and down progress. I continued to get worse but I carried on with the pulse, which seemed to hold things 'relatively' stable.
I ended up having difficulty with walking, very poor balance, poor vision and I went back to sleeping for most of the day. I had returned almost to where I started. It took the whole month before I saw any improvement.

Pulse 9 - some real improvement at last !

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.

Four on the floor - but did I crash reverse?(damn these motor problems)

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.

Three down and keep right on

 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.

2nd pulse done and dusted

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.

First pulse down, x many to go-oh joy!

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.

1st week of abx

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.

A delicate balancing act

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.

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