Andesine's blog
Submitted by Andesine on Sun, 2008-07-06 09:38.
Before I started all this pill popping I had some major problems with my fingers and thumbs. Every time I put my hands in water to do washing up, cleaning, hair washing or having a bath, half an hour later I could sit and watch my skin splitting open. It was like deep paper cuts and really, seriously painful. The following day I could sit and watch as they healed up again. It was really that fast and the weirdest thing ever. There was scarring all over my thumb pads, you couldn't see the prints any more, and scarring all along the sides of my fingers. I'd lost all sensitivity of touch due to the skin thickening. I made several appointments at the Doctor's but of course by the time I got there they'd have healed again.
Submitted by Andesine on Mon, 2008-06-30 08:54.
OK I wish to complain. There I am, happily doing CAPi. Everything going along swimmingly and then I start my first pulse. Well day 1 was fine. 1 Metroi - no real issues. Day 2 - 1 Metro - also fine apart from a sticky eyelid problem Day 3 - 1 Metro - feeling decidedly odd. Very queazy in the morning which drove me back to bed. Fine later on. I decided at this point that 3 days was enough of a pulse for the first one. However, I now seem to be having queazy issues every morning. I can only assume the Metro has set off a reaction to Doxyi that I never had before as this feeling seems to come on after my morning abxi. I'm thinking of moving them to late night so I can sleep off the queazies. Anyone else do this or have any warnings about night time abxi?
Submitted by Andesine on Sat, 2008-06-21 05:36.
Well here I am again but this time on the brink of the first pulse.
I just took my jaunt over to the Pharmacist. After the last debacle I was a bit of a coward and took this scrip to another branch of the same group which is smaller so I figured that there'd be less people to get embarrassed in front of.
As it turned out, when I arrived it was empty so I didn't have to adopt the disguise but I did have a chance to have a long chat with the Pharmacist. What a nice man.
Submitted by Andesine on Mon, 2008-06-16 04:26.
Well end of week 8 and this seems to be doing nothing for my brain. I'm still completely ditzy and yesterday Forumed when I should have Blogged. Energy levels are odd. Some things I can do with great gusto, others have me puffing and panting like an old boiler. For example, Saturday evening I was running a gig in Bedford. It's at a club on the 3rd floor of a building and there's no lift. (3rd floor UK... 2nd floor US).
Submitted by Andesine on Sun, 2008-06-08 03:46.
Oooops, missed a week, slapped wrist. End of week 7. Week 6 shot past in a blur as I was so busy. I guess that says a lot as I was actually able to be busy and not constantly get bugged by the MSy shakes. Week 7 I've been just as busy and week 8 gets worse as I'm busier, however, I've had a couple of reminders that I'm not 100% over the last few days.
Submitted by Andesine on Mon, 2008-05-26 06:47.
Five weeks down, ??? more to go and this week I've actually been feeling really good. The eyelid flicker has decreased since I increased the CQ10. I've spent most of the week gardening. Done a lot of heavy digging and sack dragging and I hardly experienced any left side weakness. Once or twice whilst trying to stomp the shovel into a particularly recalcitrant patch of earth I noticed a reluctance from my leg to provide the necessary force but other than that, fine. I had been expecting problems as last weekend I ran out of NACi and my new supply didn't turn up until Thursday. As soon as I started taking it again, back came the sinus headaches so I suspect my previous euphoria was NACless related. Still feeling fairly energetic though so onwards and upwards.
Submitted by Andesine on Sat, 2008-05-17 14:46.
I'm feeling a bit like a 1960s pop hit at the moment. Four weeks in on CAPi, two weeks on Zithi and all is going fine....... except for the twitch. It's my right eyelid and it's annoying. Actually, annoying isn't the half of it, it's driving me nuts. I've had something like it before when I'm over tired but this is nothing to do with lack of sleep; since I've had the Melatonini I sleep like a log. I'm pretty sure this is to do with CAP. It's the same eye as I had the worst of the Nystagmus in before I was diagnosed with MSi.
Submitted by Andesine on Sun, 2008-05-11 05:17.
Well that was daft, and amazing. I worked out how many pills I'd taken since starting CAPi. 903! Then I worked out how many more I'll take if I'm on the same stuff for two more years. Over 30k! Seems impossible but given I've already taken 903 without too much hassle then I suspect the rest will go down just as easily. I figured I could start a countdown calendar or do one of those songs...... 31,390 pills on the wall 31,390 pills chuck 43 down, swill them around 31,347 pills on the wall Anyway, after 903 pills, and first full week of Zithi, results?
Submitted by Andesine on Mon, 2008-05-05 07:04.
Well that's week 2 done. 200mg of Doxyi and all the expected horrors really haven't happened. YAY ME! I've had no gastric problems at all since I developed the morning biscuit and oils routine I mentioned in my last post but I have noticed I was putting on a bit of weight. This is a me thing. I've always avoided breakfast as I found it piled the pounds on so the biscuits had to go. I'm now having a fruit feast. Somebody recommended a goat but I couldn't possibly eat a whole one.
Submitted by Andesine on Sun, 2008-04-27 05:00.
Well I thought I'd update this at the end of one week of Doxyi at 100mg. There's really not an awful lot to write home about so far but I figured it was worth posting so that there is a balance to all those who get completely clobbered and people who also get little reaction don't think they're a hopeless case. I've had no problems. No nausea, nothing. I have noticed a couple of changes though.
Submitted by Andesine on Thu, 2008-04-24 06:50.
Today is day 5 of the Wheldon Protocol. I saw David last week, got all the info and the prescription and trotted off to the Pharmacy to get it filled. I picked a particularly busy time and therefore had a somewhat harrassed Pharmacist who was presented with something well out of the norm. First off, I completely wiped out all their supplies of Doxyi and Azith so half had to go on back order. Then I caused no end of confusion with the pack labelling. They just didn't have enough room to fit the 100mg per day for 1 week then, if well tolerated increase to 200mg per day then........ so eventually I just told them to put "as directed" on there.
Submitted by Andesine on Tue, 2008-04-01 03:15.
Well I finally got the decision from my GP. "Forget it." He spent several weeks talking to the rest of the practice doctors, several of whom have refused to treat other MSi sufferers with Naltrexone. He also consulted the Medical Council and my Neuroi, who seems to have announced that as I currently have no symptoms then I really don't need any drastic treatments. It was news to me that I don't have any symptoms. Next time I find myself on the floor I'll have to remember that it's nothing to do with MS. 
Submitted by Andesine on Tue, 2008-03-11 13:56.
I've had a phone call from my GP. Poor guy didn't know what was about to hit him when I trundled through his door waving a pile of paperwork. He's spent the last week researching this and phoning all over the place talking to Medical specialists to get their views and legal types trying to find out where he stands if he helps me. There's still hope as he says he wants to help but obviously he needs to cover his backside if I'm in the process of voluntarily poisoning myself. Dr R, if you read this I'm happy to sign a waiver. Heck, I'll sign 10 waivers if necessary.
Submitted by Andesine on Thu, 2008-02-28 16:35.
That's when I walk into my GP surgery and find out if he's willing to support me on this. Thanks to David Wheldoni I have paperwork ready to back me up. Now all I need is for the rest of you to keep your fingers and toes crossed. Well, as far as you can manage without falling over. By 09:50 I will be out, either with a decision or having to wait while my GP checks it out further. At this time you may uncross anything you crossed. If you're in brain fog mode can't remember why you crossed it then bookmark this page so you can get a reminder.
Submitted by Andesine on Sat, 2008-02-23 17:24.
Me and my big mouth. Having raised the NACi dose to 2400 per day and still gaily sailing along without any major symptoms, today decided to show me exactly what I've been missing. Thumping head. Blocked and runny nose. Sneezing. Really weird sort of sparkly multi coloured lights circling. I could see them with my eyes open or shut. Thankfully they didn't last too long. Balance was a lot worse as well. What's the situation with painkillers whilst on CAPi? I'm hoping to get the go ahead for abxi next Friday.
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