Gibbledygook's antibiotic log

Tell us what you are using to treat your MS-- and how you are doing.

Postby SarahLonglands » Wed Apr 13, 2005 10:11 am

Don't worry, Alex, about starting inextricably crying whilst taking metronidizole, this is definitely par for the course. It can also, for a short time, make some pre-existing symptoms slightly worse.

A certain person has asked my husband why he should want to treat someone with a course that is going to make them feel worse. Why indeed except that they are going to come out of it a darn sight better than before starting! Like me, you are not the sort of person to accept the disease and sit back and wait for what might come, partly because we know more than most people what is likely to happen, so we fight, but along the way we are almost bound to come across a few insurgents.

Have a good time whilst you are away! 8)

Sarah
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Postby SarahLonglands » Thu Apr 14, 2005 3:21 am

I have just had a phone call from Boots to say that the roxithromycin has arrived! :)
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worsening of pre-existing symptoms or new symptoms...

Postby gibbledygook » Fri Apr 15, 2005 1:51 am

I am on my fourth day of metronizadole and I can't wait to end the five days as for the last two nights I have had difficulty urinating (urgency, rush (hobble) to toilet, no release). I have had urgency before but never difficulty with release so I hope this isn't some kind of new relapse/sign of ongoing, inexorable deterioration!
I have also felt quite emotional, cold and shivery and tired.
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Postby SarahLonglands » Fri Apr 15, 2005 7:30 am

Four days is very good for a first bout, so I should leave it at that and have a drink tomorrow evening: you could probably do with one. I very rarely managed a full five days, certainly didn't the first time, mainly because I got so weepy and as you say "emotional, cold, shivery and tired." When you feel like that, every thing that happens makes you fear the worst, especially in the middle of the night. It's not just MS symptoms either: I am normally not fazed by very much, but I have lain awake, unable to get back to sleep, when I have heard what I was convinced was someone trying to break in, not thinking that the alarm would go off if they did and they would have to be jolly clumsy burglars to make such a noise anyway. It was only a fox, but even hedgehogs can be rather noisy when all is quiet outside. So please, go easy on yourself, and next time work it so that you start on Sunday or Monday! I am overdue starting on my latest booster course dose of metronidizole. I should have started it on Sunday, but felt too down even to think about it, then on Wednesday thought I might as well bite the bullet. So I took two, but by 16.00 was so miserable I thought that this was silly, especially since we have dinner guests tonight. So I will start again this Sunday. Coward! :oops:

Sarah
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Thank you for the encouragement!

Postby gibbledygook » Fri Apr 15, 2005 7:40 am

Ooh that's just what I wanted to hear! Metronizadole is really quite powerful and it would be nice to have the weekend free of shivers, tears (I cried in Starbucks this morning -argh!) and worse symptoms. Four days is good for starters.

As ever thank you, Sarah, for your insights and comments. Hope the art work is coming along well.

alex
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Re: Thank you for the encouragement!

Postby Daunted » Fri Apr 15, 2005 10:02 am

I'm in diagnostic limbo and was looking for some reaction to the metronidazole to reassure me that I am on the right track with all of this.

During my 2nd pulse I developed fasiculations and other symptoms acting up. I was very frightened; when I told family members about my symptoms acting up, they said, "Right on, this is what you were hoping for, eh?" but I simply couldn't comprehend it. I just felt I was getting worse, quickly. I couldn't even wrap my mind around the idea that this was indeed what I was hoping for.

Of course within a week of stopping the metronidazole, I was fine.

But the combination of symptom exacerbation+metronidazole induced depression is something to be dealt with, indeed!
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Thailand

Postby gibbledygook » Tue Apr 26, 2005 9:32 pm

Hi everyone,

Just wanted to say that in spite of arriving in Phuket for the hottest time of the year with 50% plus humidity I have managed to walk! I obviously haven't attempted to walk very far as the temperature is on average about 33 centrigrade and it's so humid that when my lovely boyfriend steps outside from the air conditioning his glasses go all misty which looks very sweet!!

I am sure I wouldn't have managed this in November last year before I started the antibiotics.

Spasms are pretty awful though so I have to drink quite a lot of margaritas to get to sleep!!

Hope everyone is still doing well on this regime.
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metronizadole addiction

Postby gibbledygook » Wed May 04, 2005 12:37 am

I came back from Thailand on Sunday and immediately decided to take another pulse of metronizadole as I think it made my 2 weeks in over 50% humidity and temperatures in the high thirties bearable. However I have only had two weeks off the metronizadole so I hope taking them frequently isn't a problem. I think somebody else mentioned that they looked forward to the pulse of metronizadole and I can sense why even though yesterday I was back to feeling a bit tired and emotional and grumpy. I wonder if metronizadole is addictive?!
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Re: metronizadole addiction

Postby Daunted » Wed May 04, 2005 6:19 am

The answer to the question, "How much metronidazole can I take?" is, "As much as you can tolerate."

Dr. Stratton at Vanderbilt is known to prescribe 1000mg *daily*- not pulsed!

But most patients have used it as a pulse. My doctor has some patients who, when they can tolerate it, do one week on, one week off. I've been doing a 5-day pulse followed by 7 days off, then another 5 day pulse, etc.

Be very careful with the metronidazole- but also know that there is nothing magical about 5-day pulses.
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Postby GPlover » Thu May 05, 2005 6:33 am

For those who take metronidazole more often (eg. 1 week off 5 days off) do you hope to get rid off the "bugs" quicker? Can it possibly reduce the approximate 1 year treatment time?
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thought I saw/felt improvement

Postby gibbledygook » Thu May 05, 2005 8:30 am

Well, I'm taking it more regularly as I think it improved my symptoms but of course this could be random. Naturally it would be great if the duration of the treatment was thereby shortened but that wasn't my first thought which was more akin to " think those nasty antibiotics may have helped, lets try some more".
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Postby Daunted » Thu May 05, 2005 11:25 am

GPlover wrote:For those who take metronidazole more often (eg. 1 week off 5 days off) do you hope to get rid off the "bugs" quicker? Can it possibly reduce the approximate 1 year treatment time?


Theoretically, it can, but the optimum time for treatment is not scientifically established. Anecdotally, some patients have felt much better sooner through using the method of one week on, one week off.
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Pulses

Postby Brainteaser » Thu May 05, 2005 8:06 pm

I assume a flagyl 'pulse' simply means taking a short course of the treatment in tablet form ie 3x400mg per day over (say) 5 days. But does it mean anything more than this?

Regards & thanks,
Phil.
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Postby SarahLonglands » Fri May 06, 2005 3:52 am

Phil,

Do you keep changing your avatar or are you someone else? Perhaps I should confuse everyone and change mine, and take the paper bag off. :wink:

Yes, a 'pulse' means exactly what you say.

GPlover (or GPhater?)

As Daunted says, the optimum time for treatment hasn't been established, but to take it for less than a year seems a bit risky going by other people's experience: if you stop it too soon, you risk all your symptoms coming back.
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Postby GPlover » Fri May 06, 2005 6:15 am

Thank you all for your inputs. I know that this whole treatment is empirical and nothing is established or guaranteed. I was just wondering if one does the metro pulses more often than it should kill Cpn quicker and maybe it could shorten the treatment time. But maybe it doesn't work that way...I also remember reading somewhere that Cpn should be "paralized" first before they can be killed, so maybe taking metro too often has no additional benefit than taking it every 3-4 weeks? Who knows... :roll:
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