abx

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

Postby MacKintosh » Sat Sep 23, 2006 6:37 pm

Wiggy, Congratulations! Took a lot to swallow that first one, I know. You're doing well, thus far, so I hope it goes easy for you.
I've delayed a couple of pulses because of timing, too, but when it comes down to it, it's just not convenient. Ever. Whenever I down that first pill of the pulse, I remind myself it would be a lot more inconvenient to be in a wheelchair, or out of work, so I change my perspective pretty quickly. I'm really thinking I should change my screen name to Pollyanna.
Keep us up to date. Again, SO happy for you!
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby Katman » Sat Sep 23, 2006 6:44 pm

Wiggy

It is really a landmark for all of us when a stalwart member of this adventurous clan begins flagyl. As we always tell ourselves and each other, we will pick you up and point you in the right direction if you get misaligned along the way!

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 » Sun Sep 24, 2006 7:30 am

Wiggy, at last you have managed to start! You are wise to go easy this time, especially since you seem to have such an unusually busy after-school week ahead. Of course, you might find as I did that the first pulse was the easiest. Other than feeling like I was totally divorce from my surroundings I felt nothing unusual: just like a more exaggerated version of how I often feel. It does make you feel tired, though and you might be more inclined to burst into tears for no reason, so be warned. If you feel like you have had enough, stop early.

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 » Sun Sep 24, 2006 11:01 am

MacK, Rica and Sarah - Thanks for the encouragement and I am happy to be on my way!

Mack - I didn't coat my first dose in jelly as I guess for some reason I needed to experience that awful taste for some reason! So glad it went down.

Rica - Thanks, I will let you know if I get misaligned - so far ok.

Sarah - It is going well so far but I am taking it slow - I figure if all goes easy I can start next one early or at least on time. I feel a little tired and I really have to think hard to type - so it is affecting me even at this dose. If I find myself crying at commercials through out the day I will take it as a sign to stop!
I will let you know what tomorrow brings.
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Postby SarahLonglands » Sun Sep 24, 2006 11:31 am

Wiggy, I read on CPN that tomorrow brings a day off school for your daughter: you certainly picked a fine week to start. But crying at daytime commercials is certainly an indication that it is time to stop!

Sarah 8O
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 » Sun Sep 24, 2006 11:40 am

Yes, I am surprised we have a day off so early in the year and this is probably not a good time to start but better than summer! I am so tired of waiting to start - I said well that is it - enough waiting!
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Postby wiggy » Mon Sep 25, 2006 4:39 pm

Today a few more symptoms, slept right through the night and did not get up for charcoal - woke up and my legs ache, burn all the way to my feet. I felt better after I showered but I am moving a little slower but at least I am moving . By late afternoon, the achy legs have subsided for the most part.

I feel more tired than usual and a little irritable but otherwise it was a good day. I met some friends with my daughter at the park.

I do not want to set an alarm for charcoal but hope I get up for it tonight as I think it was helping.

Day 3 is almost done!
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Flagyl #2

Postby wiggy » Wed Oct 11, 2006 4:29 pm

Started my 2nd pulse today and up'ing my dose. My husband cancelled his hunting trip for this weekend and I was feeling really good yesterday so decided it is time. I am suppose to go out tomorrow with my sister-in-laws but may just stay home depending on how I am feeling. That is all I have planned until this weekend and my husband will cover for me if he has too. My daughter plays soccer Saturday and she has a neighbors birthday on Sunday.

I'll keep you posted and plan to stop early if I am crying for no reason!
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Postby SarahLonglands » Thu Oct 12, 2006 3:49 am

Wiggy, you might well find that if you stop early because you are crying for no reason you never finish a full pulse! Even three years on I can still do it, especially after three or four days.

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 Oct 12, 2006 5:25 am

Sarah,

It is going pretty well so far - I just have leg stiffness and notice I do not have my usual patience. I was irritable last night and my daughter told me "just have the neighbor pick me up from school (instead of me) today." She usually wants it to be me but I think she knows I am tired and I may take the neighbor up on this.
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Postby wiggy » Thu Oct 12, 2006 11:09 am

I am having a great day - I think I have the flagyli energy every one talks about as I did go out today and met my sister-in-laws for lunch.

They normally meet me at my car and push me on walker as my legs just have not been moving good for several months. Today I get there first, pull walker out, walk in (driveway is on slope - not easy), ok I am walking very slow, but I am walking. The hostess takes me to the table and I am almost there when one of my sister-in-laws walk in and I tell the hostess, my sister-in-law is going to be shocked when she sees me as she normally meets me at the car to help me get in restaurants. I told the hostess, "there she is and look at her" - my sister-in-laws mouth is wide open - totally surprised and so am I. I told her - I thinks its the flagyl. We are at a Chinese restaurant - I read my fortune cookie and it says "more money and travel is in your future". I get home and there is a message from the realtor saying we have just leased our other home and this means I will be getting my furniture (in the other home) for Christmas. We have been living at this ranch home filled with card tables and chairs for a year without furniture as we were told it is best to leave "other house furnished" (easier to sell). The only reason we moved was because I could no longer walk up the stairs without alot of help. We built that home 10 years ago, all bedrooms upstairs, and just before its finished being built I am diagnosed with MSi. So crazy.

So, please pass the flagyl!
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Postby Katman » Thu Oct 12, 2006 6:03 pm

Wiggy,

Your success is one of those "I couldn't do that before!" They have to be some of the most wonderful moments of life! Last year was one of mine when I did not have to use an electric cart and walked through the store, albeit with a wheeled shopping basket, but it turned out to be the first of a long list of things that I can now take for granted - just like real people. Many congratulations!

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 » Fri Oct 13, 2006 7:31 am

Rica,
It was so unexpected as I did not even expect to be able to go to the restaurant as I decided it was time to start my pulse and did not think I would feel ok to go out.

I am always tired, conserving energy and have someone on guard to look out for me. So to be able to do what I did - have the energy and not feel like I was going to pass out by the time I got to the table was amazing and I am glad I am writing about it so I can look back on my journey!

This surprise event will keep me going for months - even if I can't do it again for a while I believe it is around the corner.

I can finally say - "I couldn't do that before" succcess stories are happening for me! How great is that!
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Postby wiggy » Mon Oct 16, 2006 5:54 am

I made it! The only problem I had so far is the ususal leg pain and stiffness. I get this with doxyi and zithi combo often but it seems to be even worse when you add flagyli. I would wake up at 3:00 and take my charcoal and have a hard time sleeping after that as calves hurt. They still hurt now but I think it will disappear by lunch.

My next pulse I hope to be up to regular dose - 400 mg, 3 x / day. I will wait and see how whis shakes out!
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Postby wiggy » Mon Oct 16, 2006 5:55 am

I made it! The only problem I had so far is the ususal leg pain and stiffness. I get this with doxyi and zithi combo often but it seems to be even worse when you add flagyli. I would wake up at 3:00 and take my charcoal and have a hard time sleeping after that as calves hurt. They still hurt now but I think it will disappear by lunch.

My next pulse I hope to be up to regular dose - 400 mg, 3 x / day. I will wait and see how whis shakes out!
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