Gibbledygook's antibiotic log

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

Postby Daunted » Tue Jul 19, 2005 10:53 am

I have experienced clear flare-ups for up to 2 weeks following a flagyl pulse. This stuff is impossible to sort out in the short term. It's a roller coaster ride.

(That doesn't mean I am delusional about this and there will be some for which the antibiotics don't help, but I think it's a bit early to conclude that, yet.)

Oh and I don't know that I qualify for "heavyweight" as I was under the impression that "9 stones" meant *90 pounds*...but all the same, certainly body mass index makes some difference. The bottom line (to me) is that if Charles Stratton says that 1000mg of Metronidazole a day is fine, and so does my doctor, than I wouldn't worry about it.
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elevated temperature

Postby gibbledygook » Thu Jul 21, 2005 3:40 am

For the last two or so weeks my partner has been commenting on how hot I feel. I finally got out the thermometer and discovered that I have a very slight temperature at 37 and a quarter. I am usually about 36. I presume this may have something to do with the antibiotics. Has anyone else experienced something similar?
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Postby Anecdote » Thu Jul 21, 2005 11:23 am

It may well be due to both the searching out of the pathogen and its removal from your system. Remember that you have only recently finished a course of metronidizole of punishing duration.

Also add to this the current ongoing events in London, then go and have a long, cool drink. :P
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Daunted » Thu Jul 21, 2005 2:37 pm

I'm back on Flagyl myself and my joints are popping like crazy and my myalgia has returned with a vengeance. Striking, the difference!
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Postby VladFT » Thu Jul 21, 2005 3:16 pm

Exuse me my layman's opinion :) , but it seems that the very fact that Metronidazole causes so much mess speaks volumes. That what Dr. Wheldon
also mentions on his website.
I don't think that it'll cause anything to a healthy person , without any pathogen. Although my own reaction to it has been very mild so far, when on it I just sleep couple of hours longer than usually :) and a bit tired . But I've had only 2 pulses so far and it might get more intense later.
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Postby Anecdote » Fri Jul 22, 2005 5:02 am

Hello Vladimir,

You might never get the same strong reaction, some people don't. You are very young and when I was your age the only symptom I had was a numb thigh for a few weeks, (Oh, and the insect bites were getting worse)so I guess my bacterial load was still very small. You might be the same! :)

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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post pulse update

Postby gibbledygook » Wed Aug 03, 2005 3:38 am

Wow; it's been a roller-coaster since doing 12 days on metronidazole. It is now 20 days since my last pill of flagyl and I think I am beginning to feel a bit better. It was so bad around 7 days ago that I considered going off for a course of methylprednislone (steroids). Indeed from being able to walk around 800 meters in an okayish style about a month ago I was unable 6 days ago to make it to the kitchen (5 meters). The unpleasant foot burn became milder almost as soon as I stopped the flagyl but my walking continued to become stiffer, less coordinated and wobblier. It is only today and yesterday that my right leg hasn't felt horribly stiff and too weak for walking.
There does seem to be a correlation or coincidence between taking the flagyl and deterioration in symptoms. So in the future I am going to do only 5 days of the flagyl. :)
Other less bothersome symptoms I hardly notice anymore; numb right hand is still numb, movement induced phosphenes are very rare, bladder control is ok and funny kidney area l'hermittes-type signal has disappeared. Mmm. Onwards through the fog.
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Postby Anecdote » Wed Aug 03, 2005 4:03 am

Thankyou for this posting: a rollercoaster is the right word, especially if you take the stuff for so long. Be more timid, like me and you will get there just as quickly in the end, but maybe a bit less bumpily. Five days is quite enough. David did it for a week once, until I made him stop! And he doesn't even have MS! :roll:

Have a good time in Italy.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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update

Postby gibbledygook » Wed Aug 10, 2005 10:43 am

It is now 26 days since I have stopped a mega dose of flagyl. About 10 days after taking the pulse of 12 days I could hardly walk to the kitchen as the spasticity in my right leg was the worst it has ever ever been. This nasty phase of walking lasted about 7 days in all. Now my walking is a bit better and I managed to walk without limping too much about 700 meters yesterday so I feel like I am getting back to where I was before the pulse. 8) But I'm still surpisingly shaky. This was possibly not a relapse but a phase of all the nasty bacteria doing something nasty once killed off by the pulse, a "pseudo flare". This belief is fortified by the fact that it was only my right leg and left foot burn which worsened this time round whereas when I first started going downhill I was affected in my right leg, my left leg, my bladder, my swallowing, my odd kidney area l'hermitte thingamybob and my right hand. Well, if it was a relapse the areas affected were much fewer. I think/hope that resumption of vitamins and amino acids is helping the recovery. Still I ain't taking the flagyl for another 2 weeks as I'm off to boiling hot Italy and I really daren't risk a sudden worsening of walking in front of the potential in-laws...! It'll be bad enough in the Tuscan heat.

I am also immensely cheered by the discovery of a stem cell company which will inject umbilical cord stem cells into one's spine for about £12,000. Apparently it really helps. I think that even if the antibiotics work I will need a stem cell boost because I have a large lesion in my spinal cord and repairing this area is particulary difficult. I posted details of the company in the stem cell section. :lol:
Last edited by gibbledygook on Thu Oct 06, 2005 2:10 am, edited 1 time in total.
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Continuing antibiotics

Postby gibbledygook » Fri Aug 12, 2005 7:16 am

I just want to make it clear that I absolutely still condone and endorse the consumption of antibiotics for MS and that the stem cell interest is just as a repair mechanism. I think maybe I wasn't too clear there.

I got ludicrously drunk last night whilst cooking for several people. My partner was impressed by my walking during this much enjoyed lapse in sobriety. My stiff leg was much better yesterday and I DO THINK the antibiotics are beginning to work. I think the bacterial load in my spinal column is/was unfortunately quite large (my neuro said I had a large demyelinating lesion when he got the scans) so that my response to the antibiotics may be somewhat less encouraging sounding than for others. If I sound less enthusiastic than some about the antibiotics then it is simply a reflection of my experience but I really DO NOT want to put people off trying something which may be of immeasurable benefit.

I'm not taking my walking stick on holiday with me as planned so there's something! :lol:
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Postby Anecdote » Fri Aug 12, 2005 8:00 am

Hi Alex,

If you managed to impress your partner with your walking whilst ludicrously drunk, you must be doing something right!

I would just like to say that if the damage in my spinal column was anything like yours, I would be thinking along the same lines as you:aid repair in that area with a stem cell injection, but use the antibiotics to get rid of the infection and stop the new cells becoming infected in the future. Luckily I don't have that type of damage, so I can save my money for more paints.

Have a good time in Italy, but.........................! :wink:

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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6 months and one weeks

Postby gibbledygook » Sun Aug 28, 2005 4:28 am

I have just returned from a hot and humid trip to Italy. It is 6 weeks since my last heavy pulse of metronidazole (12 days worth). 10 days after that pulse I could hardly get to the kitchen as the spasticity was so severe. In Lucca a week ago on a sunny day of about 24 degrees C I walked on my partner's arm (more for reassurance than need) for 850 meters. When I worked out how far I had gone I nearly cried for joy. I was very naughty on holiday and drank as much as the others (we'd hired a villa in the hills). This meant approx. a bottle of chianti a night! Oops.
I did pay for this overindulgence especially after the avonex injection. The combination of an incipient cold, dehydration, injection, hangover and heat made swallowing quite hard and this persisted for about 3 days until today. I also noticed in the last few days a new symptom affecting my finger tips; sharp, stabbing pains which move from finger to finger for a few seconds or when I exert significant pressure (eg trying to open obdurate jars). I think this may be a bit like Anecdote's roving shoulder pain, or I may just be having a new flare of endotoxins as I sure gave my body some free radicals to think about. I did at least scoff my vitamins and essential fatty acids and upped the dosage of CoQ10 and n-acetyl carnitine to make up for the over-indulgence. My partner says I'm better than I have been for a long time.

I start my 6th short pulse of flagyl today. 8)
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objective update

Postby gibbledygook » Mon Aug 29, 2005 4:26 am

Everyone seems to be after some sort of objective information about people's progress on the antibiotics. As I have kept a diary I can see that I am now roughly back to where I was in around April when I managed to walk circa 850 metres slowly in high temperatures and humidity. I seem to have recovered from the latest attack affecting my leg/spasticity with no residual damage. I'm not too sure though about the very recent reappearance of mild but worrying swallowing difficulties and brand new unpleasant roving stabbing sensations in the tips of my fingers. My left foot burn was completely absent until I started the metronidazole yesterday and is now back a bit. The funny kidney l'hermitte type thing hasn't surfaced since May. My bladder/bowel is slightly better than when I started the flagyl. On the whole I think I am marginally better than I was in April. I have been on the abx for 6.5 months (though only 4.5 months if considering only European sourced antibiotics as others came from potentially dubious internet sources). It's not exactly scientific but I'm afraid that I can't do better than that! 8)
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Postby Anecdote » Mon Aug 29, 2005 5:55 am

I'm glad you had good time in Lucca and that your partner says that you are better than you have been for a long time. Never mind about the Chianti - you were on holiday after all, although I must say that if I drank that much every evening I would be completely under the table. :oops: At least you scoffed your adjuncts at the same time.

I am slightly uneasy about this day to day objective information, but can kind of see the reasoning behind it. The roving finger pains do seem rather similar to my roving shoulder and arm pains and I think you have explained you swallowing problems yourself! I think the best thing is that your l'hermitte's thing has been absent since May. I was just starting to get this before treatment but I had very little damage outside my head. It went within a few months, never to return.

Keep up the good work and don't take the flagyl for more than five days! :wink:

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Oh frabjouis day, callou callay!

Postby gibbledygook » Tue Aug 30, 2005 8:51 am

I think an amendment to my previous "objective" statement is immediately due. I have just walked 900 meters without aid in heat of at least 25 degrees C on a sunny day in London in a black hot (er, not sexy just temperature hot) top. I wasn't obviously limping by the end of it. This is a DEFINITE improvement on my April walking.
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