Daunted's antibiotic log

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

Postby Anecdote » Fri Jul 15, 2005 7:17 am

The Vanderbilt regime is the one used by Charles Stratton at Vanderbilt University. He and Prof. Ram Sriram are really the brains behind all this. My husband David's regime is based on this but uses roxithromycin which we can get here in England, but you can't in the USA. It is basically what you are on already. They often prescribe minocycline in preference to doxycycline but doxycycline is kinder on your liver. When you go onto intermittent treatment you won't be able to use rifampicin, so will have to change either to azithromycin or consider importing roxithromycin (as Rulid, the original brand by Aventis) from http://www.drugdelivery.ca/ which is a very bona fide website.

With regards to flagyl, the good thing about is that on this treatment, it can be added when convenient. For instance, if you are going away, or have a really bad cold, say, leave it until you get back, and so on.

An idea: why don't you consider starting your own Regimens thread, by clicking on the 'New Topic' button to the bottom left. I know antibiotics seem to be taking over this section, but it was started before Aaron started the 'Antibiotics' forum.

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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New Topic?

Postby Katman » Fri Jul 15, 2005 7:34 am

Dear Sarah

Since I am so new and still unsure of myself, I defer to you on this topic. I have learned so many valuable things in the few days I have been on this site that I don't want to be tiresome with any inappropriate ravings. I think it feels presumptuous to initiate a new topic when I can't get past the Subject!
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby Anecdote » Fri Jul 15, 2005 7:48 am

Ah, but you and your treatment are the subjects! That is why the 'regimens' section was started. Please don't defer to me on anything, but just do as I say! :wink:

Now I must get back to my painting!
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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OK Will do

Postby Katman » Fri Jul 15, 2005 7:56 am

Love that! The only reason I ever cut class in college was to practice (I was a piano major and took up violin at 23 because it looked like such fun. It was! I love your paintiings and am thrilled that you started cello. I really believe that if everyone had an instrument there would be a lot less murder.
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Metronidazole Warning

Postby Daunted » Wed Jul 27, 2005 2:04 pm

Hey all,

I have mentioned here before that taking Metronidazole (Flagyl) for 5 days a month is a conservative approach and that my doctor has suggested that if I can tolerate taking it more often, that is something to consider.

It's worth remembering that most of the patients he treats have CPn-related arthritis, fibromyalgia, or chronic fatigue syndrome, so they may have slightly different reactions to treatment.

I "went aggressive" and took Flagyl for 22 of the past 39 days (roughly) at 1000mg per day, although on some days I used 1500, which is really tough to take.

At present I feel like total utter crap and have lost many of the gains that I have achieved! I am really having a rough time of it and I am now going to take a 21-day break from Flagyl altogether.

So, a warning: If you are going to increase the amount of Flagyl you take from 5 days per month, do it carefully, and cautiously, and be prepared to pay some consequences!

I'm off to take some Questran and Charcoal...
On Vanderbilt Antibiotic Protocol since January
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Postby LifeontheIce » Thu Jul 28, 2005 4:00 am

Hello, Daunted! Thank you for warning. I am on my seventh pulse of Metronidazole now. I was seriously considering adding extra days to it. I think I will stick to five days.
Barbara(aka Torpedo Pilot)
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Postby Anecdote » Thu Jul 28, 2005 4:13 am

Oh dear! At least you know you will soon regain what you at present feel you have lost. I do think that people with arthritis and fibromyalgia are going to respond somewhat differently. When I eventually get around to finishing my update and get my internet access back so I don't have to use David's PC, hopefully in reverse order, you will discover that someone taking it for myalgia and cardio vascular problems can stomach it for longer than five days, but, no matter what my weight or the dosage, I could only do four or five days period.

Enjoy the Questran and charcoal! :wink:

Sarah

PS: Barbara, Torpedo Pilot? The mind boggles, but do stick to what you are doing, please!
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 LifeontheIce » Thu Jul 28, 2005 5:10 am

Sarah, Daunted knows me as Torpedo Pilot from Multipleslerosissucks forum. I originally registered there as Life on the Ice but I was denied access, so I came out with another optymistic name. I use my middle name on the Internet. I will stick with Dr Wheldon protocol. I am not fond of my Metro days, even though I understand their importance. Thank you.
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Postby Anecdote » Thu Jul 28, 2005 5:25 am

Hah, well its nothing if not optimistic! And I have got my internet access back as well, by dint of just disconnecting a few old wires from dial-up days. So I'll have to finish my update after lunch, then back too what I should be doing. And the sun has come out after yestarday being the coldest July day for 25 years. :)
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 jaycee » Mon Aug 01, 2005 9:18 am

Hey Daunted, have you ever considered changing your name to Undaunted? I think it suits you better. undaunted Syn: Bold; fearless; brave; courageous; intrepid. 1913 Webster
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Postby Daunted » Tue Aug 02, 2005 9:13 am

jaycee wrote:Hey Daunted, have you ever considered changing your name to Undaunted? I think it suits you better. undaunted Syn: Bold; fearless; brave; courageous; intrepid. 1913 Webster


I'm flattered, and actually Sarah had sent me a kind PM almost a year ago where she proposed the same thing. But I was so frightened when all of this first started happening, that it was surely appropriate.

Perhaps, now, it should be "Getting Less Daunted By the Month"?

I'm doing well. I really overdid the Flagyl before, that's for sure.

I'm getting in a Tesla 3.0 MRI machine in a few hours, so wish me luck!
On Vanderbilt Antibiotic Protocol since January
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Good luck Daunted

Postby gibbledygook » Tue Aug 02, 2005 10:06 am

Good luck Daunted! I hope the MRI goes well. I'm sure steering clear of nifedipine and metronidazole for a while... :D
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Re: Good luck Daunted

Postby Daunted » Thu Aug 04, 2005 6:56 am

My MRI was negative for lesions.

They did find some cervical spondylosis which had been missed by 3 previous MRIs. Probably because they were in 1.5s instead of the big gun, the Tesla 3.0.

I just FAXed my neurologist to ask him what all this means. It obviously doesn't explain optic neuropathy, hyperacusis, or some of my other symptoms, but it would explain an awful lot of my lower body symptoms.

So we'll see. I'll post an update when I know something.
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Postby bromley » Thu Aug 04, 2005 8:48 am

Daunted,

I assume an MRI with no lesions means no MS? Great news if so.

Are you still planning to stay on the abx regime? Or could the lack of lesions be due to the abx regime?

If I was in your shoes I'd open a bottle of champagne tonight!

Best of luck

Bromley
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Congratulations!!

Postby Anecdote » Thu Aug 04, 2005 10:56 am

Gosh, Daunted, that is good news, whether due to the abx or not. The only way to know would have been to wait until you had lesions, which seems rather foolish. I second Bromley about the champagne! :)

Bromley, I thought you didn't drink: have you fallen by the wayside or are you encouraging younger boarders into bad habits which you wouldn't do yourself? :?

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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