abx

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

Postby SarahLonglands » Mon Oct 16, 2006 6:08 am

Well done Wiggy! I hardly ever took the full five days full dose, mind you, I would chicken out after lunch on day 5, so don't feel that you have failed if you don't manage that next time.

Sarah :D
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 Katman » Mon Oct 16, 2006 6:19 am

Wiggy, my happiness for you is unbounded. As for another milestone, I would bet yours will come more often, not less.

Five days of flagyl is something I took only the first pulse at the full dose of 500 mg 3xd. Never again I said. THAT I remember. Even now after 34 pulses (4 of those tini) my dose is still 375 mg 3xd for 5 days. I suspect that this drug may one day be prescribed by mg per pound - my weight being about 115.

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 wiggy » Mon Oct 16, 2006 5:17 pm

Thanks Sarah and Rica,

Sarah, I was ready to throw in the towel morning of day 5 and than thought my husband stayed home from hunting this weekend to cover for me I should make the most of it and I felt ok. I will see how the next pulse goes when I go up to 400 mgs X 3. I won't push it if I feel lousy.

Rica - Thanks and I will be thrilled with every milestone and hope that they will come out more often. I can't remember ever weighing 115 - maybe as a teenager :wink:
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Postby mamahawk » Mon Oct 30, 2006 4:41 pm

Wow - you've completed 2 pulses already?? Congratulations!
I'm glad they seem to be going really well for you and hope the improvements continue!
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Postby wiggy » Mon Oct 30, 2006 5:25 pm

Thank-you Mamahawk - yes, time is flying!
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Postby wiggy » Tue Nov 14, 2006 6:50 am

I am happy to report pulse 3 went well. I made it to day 5 and stopped one pill short as I was feeling bad, just achey, irritable, low grade fever and a little weepy. I have been in the house since Friday and I am going stir crazy so will venture out today to run some errands.

I wake up with that flagyli taste in my mouth every morning and look forward to a morning with out that yucky taste.

I am looking forward to Thanksgiving, Gobble. Gobble.





On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromaxi 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDN 2004
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Pulse #4

Postby wiggy » Thu Dec 07, 2006 10:46 am

I completed my 4th pulse as of yesterday and feeling the usual achey, tired, crabby disconnected self. Also continue to notice the same unexplainable bruise - on the bottom middle section of my ring finger. It will go away a few days after my pulse. Overall, I like others bruise easier now than before abxii.

I had planned to get out today but will stay home and try again to get out tomorrow.
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# 5

Postby wiggy » Tue Jan 09, 2007 7:36 am

I completed pulse number 5. Overall it went better than number 4 but this could have to do with stress related to getting ready for the holidays. My daughter brought the flu home for the holiday and we were all sick here until New Years weekend.

I have asked my husband and daughter for observations related to my MSi and my daughter felt my balance is improved and I agree. My husband said my spastic muscles are much better. My legs are still on and off spastic. Day 4 of pulse 5 they did not want to bend and he had to help me into car. Overall, spasticity is better, but when I pulse this symptom surfaces again. I also ache waist down - which appears to be common with my pulses. Last night I did not sleep well and I am blaming it on the flagyli.

I did go out more this pulse - I usually stay home as I do not feel that good. I went over to some friends and later to a movie with my sister. Yesterday, day 4, I went to bank with my husband and this was hard as I did not feel very good but I did it.

The good news is on this pulse I did not have as much disconnect and emotionally I did better than ususal. Either I am tolerating the med. better or die off is happening in a different area of central nervous system.

Also, it is a first in the "ring finger bruising" did not occur.

I am making soup today - will let you know how this pulse plays out.
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Postby Notdoneyet » Tue Jan 09, 2007 11:25 am

Hi Wiggy,

Keep it up. You are doing great! Hope you don't mind a few words from someone who's been there.

You're getting into the period where improvements show in a big way, and that was the most exciting time for me. There will be lots of times when you don't feel the best, but they will become less and less. And don't you find the improvements worth it? Try to imagine that, when your legs are sore, that is what's being fixed.

Good luck and continued success,
Colin

Thirty-three months of Wheldon protocol after 25 years of RRMS and Notdoneyet :)
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Postby wiggy » Tue Jan 09, 2007 12:51 pm

Hi Colin,
Thanks for the encouragement - I love your name "notdoneyet" - when you are done you can blog "All Done". I see you have been on the protocol for a long time.

The improvements keep me going - the best. I went down for 10 years, so any improvement is celebrated.

My balance coming back is great as I lost that a few years ago and I need it back to get rid of that walker which would be a milestone.

I read your blog and glad to hear you are golfing - I use to ski and golf for fun - I was never that good at either as I did not work very hard at the sports as for me it was all social.

Hope you are all done soon
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Pulse #6

Postby wiggy » Sat Feb 03, 2007 4:28 pm

I am on day 2 of Pulse number 6. January was a great month for me, all my bloodwork at my doctors came out ok. My doctors only concern was my blood pressure dropped from 110-115/60 to 100/60. I was not concerned as it is typical from what I have read here on CPn Help. We also talked about exercise and I am really out of shape. I have not kept up with exercise for about 6 months. She discussed putting me back into PT, which I am usually all for except in January in Michigan. I do not enjoy fighting snow to get into PT, I told her I would start up a program at home and would like to start PT in Spring. This week I did manage to exercise 4 days and after my workouts I could hardly move - ache all over. Today was 4 and I will see how I do. It will take me at least 3 months to get back to where I was. One new symptom my husband and I have noticed is increased tremors. After exercising my legs really shake and in the am I notice my legs tremoring more than usual. We think this may be a good sign of my legs waking up - or signals being sent, however the signal is not loud and clear as my legs are still confused. I was also able to work in my NACi 2 times a day, which I had been struggling with and I notice a runny nose every morning. The other good news is our Brownie troop sold over 1200 boxes of Girl Scout cookies and I was responsible to calculate the numbers and submit paperwork for troop and this was no problem. I did it, which may seem simple for some but is an accomplishment for me as brain fog was such a problem. The cookies come in at the end of Feb. and two other families will help me stage cookies in my home for pick up by the troop families. I got my haircut and my hairdresser, and neighbor, made comments to me that I appear to be moving better :). I am hoping this pulse goes well and I will let you know!
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Postby mamahawk » Tue Feb 06, 2007 12:21 pm

Wow Wiggy! I can't believe you are on #6 already! I've stretched the interim between mine a few times, so am only on #9. Sometimes it just isn;t convenient to pulse! Although, since I have less reaction now, it isn't as much of a factor.

Glad it is going well for you!
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Postby SarahLonglands » Thu Feb 08, 2007 10:59 am

Yes, sometimes it just isn't convenient to pulse, so its good that it doesn't have to be done like clockwork. I always measured mine three weeks from the finish of one, to the start of the next, rather than three weeks between starts, then, if I was too busy or had been asked out to dinner or whatever, I stretched the periods a bit longer.

But Wiggy, if your hairdresser comments that you appear to be moving better, you are! :)

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 wiggy » Thu Feb 08, 2007 11:20 am

Mamahawk,
Thanks for the note and I can't believe I am on 6 either - my next one will be stretched a bit due to a busy schedule in early March and April I will work around Spring break. After Spring break I am going to try to pulse more often until school gets out as I still have ill effects post pulse - not too bad but achey and flu-like.

Sarah,

I go to the mall to get hair cut and need my scooter to get there.

My hair dresser was very surprised as I transfer from my scooter to a regular chair to get my hair washed and this time it was easy - its usually a struggle, I hold onto things to get me to the chair and it takes a few minutes. This time I was only holding on to my cane :D - I noticed my legs are "lighter" not so weighted down. She said "wow, you are moving way better". It did make my day!
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Postby SarahLonglands » Thu Feb 08, 2007 11:41 am

Well, Wiggy, in that case it was undoubtedly an improvement. My legs used to feel like they were weighted down with concrete. They became lighter gradually, so I didn't really notice until someone like your hairdresser pointed out that I was moving better. Actually, it might have been my hairdresser. Someone who is with you all the time is no more likely to notice than you are.

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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