Abx Folks - Minocycline Question

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Abx Folks - Minocycline Question

Postby marcstck » Sun Jan 29, 2006 6:11 pm

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My doc prescribed Mino for me last week, 100 Mg 2X/Day. He's prescribed it for it's immunomodulating properties, not its ABX properties, but at least he prescribed it.

Started it last week, and found it very hard to take. Lots of dizziness, nausea, feeling very spacey. So much so that I had to stop, because I needed to function at work. I'm anxious to start up again, but would like to slowly build up. Can anyone recommend a schedule? All help very appreciated...

BTW, I'm PPMS, and am progressing steadily...
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Postby wilson » Sun Jan 29, 2006 8:29 pm

Congratulations on finding a doc that will prescribe the Minocycline.

I took Mino for a year and had the same reactions you did without the nausea. I tried to take 2 100 mgs daily but had trouble breathing, especially at night. So, I just took 100 mg once daily for 9 months and worked up to the 2 X 100 mg.

I never had a setback since I have been on the ABX.

I hope this helps.

Tim
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Postby marcstck » Sun Jan 29, 2006 9:09 pm

Thanks Tim. Are you taking the Mino in combination with any other ABX?

I'll try 1x per day and see how that goes. Maybe even 1x every other day to start...
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Postby Katman » Mon Jan 30, 2006 6:14 am

Hi Markstck

It is great that you got here! Have you been to www.CPn Help.org? Everything you need (except a dr to prescribe) is there but you will get the information that you need to arm yourself for the battle ahead, if that is what you choose. My progress since meeting you on the other site has moved forward by hard-won leaps forward and a tottery step back at times.

Rica
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 marcstck » Mon Jan 30, 2006 9:18 am

Hi Rica,

I have checked out the CPn Help site, which is chock full of info. Unfortunately, all that info doesn't make the Mino any easier to take. Guess I'll just have to suck it up and take as much as I can and still funtion...

I guess nobody said it was going to be easy...
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Postby wilson » Mon Jan 30, 2006 10:18 am

At first, I took one of the CRAB drugs. After three months of making myself sick, I decided to quit the jabs to the legs. I read a couple of articles about Minocycline and MS and decided to go that route. After a year of Mino only, I went on the whole abx regimen.

With the recent studies of MS and the Minocycline, I think this is a good start.
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Postby Katman » Mon Jan 30, 2006 2:05 pm

Hi again Marcstyx

I know really nothing about Mino. What you may have to do is find a GP and lay everything out and be firm about abx. Have this CPn Help printout with you and tell him this is what you want to do. There are now so many of us getting better that , unless you have some really horrible allergy, you should have confidence on your side. I know there is something prepared for printout there- someone will come along and tell you where it is. Dr. Stratton will guide him/her through if he is unsure.

Don't give up. I hope soon people won't have to do this battle.

Best luck
Rica
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 SarahLonglands » Fri Feb 24, 2006 12:26 pm

Hello Marcstck,

Have you had any success with a GP yet? The CPn Help site now has a handbook which is quite easy to search through and pick out various things to show your GP:
http://www.CPn Help.org/?q=cpnbook

Also my husband, David Wheldon's site: http://www.davidwheldon.co.uk/ms-treatment.html contains a pdf file, only six pages long, which summarizes the main points of the treatment very well, and is relatively straightforward for a time pressed physician to go through:
http://www.davidwheldon.co.uk/cpn-ms.pdf

How are you getting on with the minocycline now? Both Chuck Stratton and David prefer now to use doxycycline because it is generally easier to stomach, so people are more likely to stick with it. Yes, it does have slightly less tissue penetration, but it is combined synergically with azithromycin, taken three times a week, which has the effect of both avoiding the build up of resistance and potentiating the effect of the doxycycline.

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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Postby marcstck » Fri Feb 24, 2006 3:54 pm

Had to stop the mino, as it made me quite sick. My Neuro is a CPN non-believer, and won't go the doxy route. That said, he's at the forefront of MS Research (Stem Cells, etc.), and has been named "Best MS Doc" numerous times, so I've decided to trust in him a bit longer.

He's quite open to experimental treatments, but only if he thinks they hold promise. He says he's had patients on the ABX protocol and seen no real results, and that there is other research to back this up.

I hope that ABX do turn out to be an answer. I see that there is a trial starting soon on Anaerobic Abx and MS. Hopefully we'll see some hard data from that...
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