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Hang in there Alex! We're all rootin' for you! Gosh isn't it amazing how we feel for one another. As soon as I read about losing ground to 800 meters, well, my heart went right out to you ALex. I thought Oh gosh! That'd be tough! But you came back so gorgeously last time...same this time, why not?
marie

Hi,

Yes, I will certainly not get too worried if my walking continues to get harder over the next week as that is what happened last time. Indeed I'm quite glad that I am experiencing the same worsening in symptoms after taking large doses of flagyl as it indicates that my first long dose and worsening in function was not a random but a repeatable event. Still just to make sure I'm going to continue to take long doses of flagyl followed by shorter ones so that the flare-ups experienced so far can be conclusively linked to the consumption of flagyl.

Goodness! A case controlled study of one. You are bold then. It is reassuring to know that your flagyl treatments are consistently resulting an a recovery of some kind each time. How are you now after that last pulse?
Marie

It is now day 19 since my last long dose of flagyl. My leg is very stiff though not as bad as it was at its worst 14 days after 12 days of flagyl in July. The walking is also very hard and I can only really manage about 400 meters with any ease. Looking at my diary I see that my walking became significantly better 42 days after the end of the long dose of flagyl so I will just wait and see...

Hooray! Today is day 23 after my last long pulse of flagyl. The last 3 days have seen much improvement in stiffness and I now no longer stand up with difficulty. There's much more spring in my step as well so I think the post-pulse come-down is over with. However I still get moments of foot burn and I'm back on 12mg of zanaflex for the night spasms. I shall shortly test the 1km hike to see how the walking is going. Fingers crossed.

I don't think I'll be doing another long flagyl pulse until next year!

Well, I tried the 800 meters to Starbucks and it wasn't at all comfortable after around 600 meters. Oh well. Patience.

Hey Alex! Great! You're on your way. Those long pulses make me nervous. I'm glad to hear you are turning the corner again. 600 meters is a long ways. that is .6Km right? so that equals roughly a half mile if my math is OK. I LOVE the measurable way you have to know how you're doing. Starbucks is 800 meters. One way? Or did you have to go home too
You give such great descriptions of those flagyl pulses. Any one can see how it is, and this is comforting. I can't wait to use my flagyl! (not here yet-you'd think Australia was on the other side of the world or something... ) You are an inspiration toa ll newbies!
Marie

Hi!

Yes 600 meters is 0.6km!
I have developed a somewhat ridiculous tendency to collect scaled maps of wherever I am and then calculate the meters I've tottered! I now have scaled maps of Lucca, Italy; Chicago, US; Marlow, UK; London, UK; New York, US; Singapore; Amsterdam; Paris!!! I'm also getting quite good at guestimating accurately distances.

Still no awful stiffness this morning.

I've been wandering around the CPn Help.org site and have just ordered some amoxicillin and rifamcin as suggested by Doctor A on the aforementioned site. These apparently kill off the bacteria in different states to the doxy/roxithromycin/metronidazole combo. This is because I am still suffering quite a bit from left foot burn and thought maybe some more ammunition would diminish this. And my walking is still pretty wobbly.

I've also been a bit anxious about something that I've had for a few months now and that is a very itchy skin, especially at night time. The itches affect mainly my torso, face and skull. I've NEVER had eczema or anything like this before. There is no marking on my skin but just itchiness. Has anyone else got the itches?!

Re: itchy skin. I did have this fairly early on in the treatment, mainly my lower back, shoulders and skull. As you say, it was especially at night time and there was no rash. Gradually it just went and at the moment I am wearing a lightweight angora and lambswool sweater next to the skin with no itchiness at all.

Although I am not now taking either rifampicin or amoxicillin, I did take rifampicin for six months in place of doxycycline, six months into treatment. It probably was very beneficial but it did throw my walking for a while. Amoxicillin I took for three weeks a month or so ago, but it had no effect whatsoever. However I was and still am, taking n-acetyl cysteine, the non-abx equivalent now used in David's regime. Perhaps this long in to the treatment I have managed to get rid of most of the EBs, although if I forget and take a double dose of NAC together, my feet become very tingly.

Sarah

Oh! Thanks for that. It's always encouraging to hear people go through the same things as me.

It is now 30 days since my last long pulse of flagyl although I am now on my 5th and final day of my 8th pulse. Hooray! I also started taking 600mg of NAC twice a day as of Monday. The left foot burn seems milder this week. I walked rather poorly 1km yesterday but on my own and without an aid. I have occassional movement induced phosphenes, stabbing pains in my fingers and the numbness in my right hand is possibly getting slightly better. Sometimes the right hand feels normal but when I test it for very fine sensation there's still something wrong and then when I exercise it's clearly still not right. I haven't had the funny kidney l'hermitte sensation since May 2005. I had had this previously every few weeks since diagnosis. This had always seemed to be a precursor to a worsening in walking.

I think the NAC may have helped with my foot burn and I'm definitely now going to include it in my daily regime even when I forget all the other supplements, which tend to make me feel rather ill.

On EU sourced abx since mid April 05 (non-EU since Feb 05).

Interesting to hear that NAC helps your foot burn. I had added amoxi to the regimen and worked up to full dose. Really difficult as I have, as was made painfully obvious, a really high EB load. Trying to add probenecid I've just felt worse and worse: tired, inflammation in muscles and joints constant, brain fog worse, more depressed. About to start a tini pulse, which of late has left me feeling better each time, so I may also switch to NAC for a while and see if the effects are more manageable than amoxi. Good to hear your experience with it. My only concern is that it hasn't been tested in the lab to destroy EB's, it's more of a suppositional thing from David Wheldon, supported by Chuck Stratton (see posts on CPn Help/?q=protocolscompared).

oooh, I hasten to add I'm only THINKING the NAC may have helped but considering I only started it on Monday I'm really not sure. However I am sure that I am beginning to believe quite a lot of what Dr Wheldon and Stratton have written re Cpn. So I'm going to stick with the NAC even when I can't bear taking all the other vitamins (Vit A, B, C, D, E, inosine, N-acetyl carnitine, alpha lipoic acid, fish oil, evening primrose oil, quercetin, and some others which I can't remember)!

I just worked out my burning/stabbing thumb pain is from high-octane, birds eye chilli pepper juice embedded in the skin! Mmm. Moderate the chilli cooking.

I haven't had my autumn relapse yet but then again it's unseasonably warm here in London.

Jim, please cheer up! Everything is supposition. I had a nearly negative serology, so it is only supposition that abx made me better. I never took amoxicillin except for two or three weeks a couple of months ago. I felt nothing when I did, but had already been taking NAC. I could surmise that it was the NAC ridding me of any remaining EBs.

Minocycline still makes me feel really yucky, tinidizole a bit less. I thought the last time I took it it was wonderful, but this time not so much, but last time I swapped in mid stream the metro for the tini, and the difference was dramatic. This time I don't have the comparison. Try just swapping amoxi for NAC for a while: you might be surprised, on the other hand you might not.

I haven't had my autumn relapse yet but then again it's unseasonably warm here in London.

Yes, isn't it just!

Sarah