HI Jim, KK2, Rica, Colin, Sarah,
Thank you! Let's do be sure to race on the beach, Sarah and Colin, right after we ride bikes. Rica could you run the stopwatch? Can you imagine? I have hope for all of us as far as running. We may all run because no one knows how much recovery is possible. No one has ever stopped the ongoing damage before. Look at polio victims. Often people were in iron lungs, even in midlife, and recovered normal function once damage was stopped. Plus, nerve regeneration is going along nicely in the labs. Some things, like pulsed electomagnetic fields, ( http://www.em-probe.com/index.html ) are available now for nerve regeneration
though again we are not yet "proven" with that kind of thing.
Like Rica said in her thread, I am thinking that this is very good and I'm happy to not progress. How odd to notice that something is better, and I have a gratitude sense that this would be OK if it was all I got. But apparently there's more to come it takes patience merely. I am going to get flagyl (soon I hope! Goodness weeks and weeks to get meds from Australia) then I will PLAN on that downturn. Thank you for the warning. I'm quite honestly a wimp and I do second guess myself all the time, which I'm sure you've figured out by now. Thus the constant "Am I better? NO not yet. How can I be better. I don't want to fool myself. I'm not on flagyl yet....Better not say I'm better til I can measure something" Being a medical person that measurable data is all important to me.
Thank you again for the encouragement and kind words. It is most positive to have this support! Gosh, how could a person do it without help and mentoring form others? Thank you everyone
Blessings
marie
Marie's abx log
Thanks J.! It does feel good to have something concrete I can measure so I know it's getting better. Today is not as good as yesterday, but that's OK It was my first day back at the gym in a long time and I'm a bit sore today, so what do I expect? But I'm happy in my head-it's working!
Now it's patience and more patience. Oh the stories!
Thanks for writing them everyone
Marie
Now it's patience and more patience. Oh the stories!
Thanks for writing them everyone
Marie
A tiny small addition: just a little comment. I complained that Christmas was going to be gift cards, but it's not!
I got myself into a Christmas mood yesterday and went shopping and went to no less than 6 stores. I was exhasuted but I did it! In every case I had a shopping cart to push, and in every case I went to stores that had very close parking (no mall stuff) but the fact is that a shopping day that includes 6 stores is good work. I came home with no less that 15 bags of things. What was interesting to me is that I got totally tired at one store but recovered some how, some way so that at the next store 20 minutes away it was a revived me going in. This surprised me and seemed unusually rapid recovery
Unfortunately, I can't measure it because I did not measure recovery time pre abx. It seems though that before I would get tired and stay that way, or recover a little and then wear out really soon at the next location. ie go to store one get tired after 15 minutes, go to next store get tired in like 5 minutes or not manage going in at all. So I think I have more energy. This is good! I can't wait for everyone to open their stuff and see that I got presents for them.
Merry Christmas! Happy Hannukah for the Moses crowd, and Peace on Earth to everyone of us
Marie
I got myself into a Christmas mood yesterday and went shopping and went to no less than 6 stores. I was exhasuted but I did it! In every case I had a shopping cart to push, and in every case I went to stores that had very close parking (no mall stuff) but the fact is that a shopping day that includes 6 stores is good work. I came home with no less that 15 bags of things. What was interesting to me is that I got totally tired at one store but recovered some how, some way so that at the next store 20 minutes away it was a revived me going in. This surprised me and seemed unusually rapid recovery
Unfortunately, I can't measure it because I did not measure recovery time pre abx. It seems though that before I would get tired and stay that way, or recover a little and then wear out really soon at the next location. ie go to store one get tired after 15 minutes, go to next store get tired in like 5 minutes or not manage going in at all. So I think I have more energy. This is good! I can't wait for everyone to open their stuff and see that I got presents for them.
Merry Christmas! Happy Hannukah for the Moses crowd, and Peace on Earth to everyone of us
Marie
Marie, For me, just wanting to go xmas shopping would be a positive improvement! Now, after about a month of ax, I am starting to have enough energy to care about my appearance enough to go beyond just a daily shower, etc. I actually feel like styling my hair and stuff.
I look forward to a day of xmas shopping at 6 stores with a recovery of some energy in between. Subjective or not, it is something...isn't it!
Really something!
I look forward to a day of xmas shopping at 6 stores with a recovery of some energy in between. Subjective or not, it is something...isn't it!
Really something!
Holding out hope for Liberation!
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Notdoneyet
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I actually dislike shopping but I LOVE Christmas. I watch it's a Wonderful Life every year and enjoy baking and plotting to get everyone here for a visit. It's a whole month of family togetherness and love, and I have an excuse to be unabashedly mushy, which is my nature.
KK2 I understand your appearance angle! I also have noticed this. It's nice isn't it? However if I take NAC I probably won't care about looks that day. It's hard on me. I do not take it every day, and I think I am going to rearrange my work schedule so I work two days and I do not take NAC then. It's the only thing I take that has done this to me.
Thank you for the feedback!
Blessings
Marie
KK2 I understand your appearance angle! I also have noticed this. It's nice isn't it? However if I take NAC I probably won't care about looks that day. It's hard on me. I do not take it every day, and I think I am going to rearrange my work schedule so I work two days and I do not take NAC then. It's the only thing I take that has done this to me.
Thank you for the feedback!
Blessings
Marie
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Notdoneyet
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LifeontheIce
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Sammy, go to the CPn Help/ to find out more recent entries. Barbara
Well, it's time for an update. I am at month 4 of abx treatment now. In Dec on about the 8th I took one flagyl pill one time. I was nauseous and tired from that but not much else. no real herx reaction as others seemed to have. I fell a couple of times the next week, and was trippy ( ordinarily I have a weak right leg with a dropsy foot, I walk with a cane about 50% of the time, usually when out of the house) but that is not that unusual for me. I then took two days of 1500 mg flagyl on about the 20-21. I continued tripping but had no clear "I took flagyl I got worse" kind of thing. I just seemed to be worse overall, tripping lots in December and walking very off balance gripping the walls to keep from hitting the floor and catching myself several times in painful ways (fell and hit my head setting off an old whiplash, falling and twisting another time on the entertainment center and most notable, falling for no good reason at all while folding clothes). I was not sure it was helping me though I thought
as noted before I certainly seemed to have more energy but that is so subjective I was not 100% sure this was related to treatment or not. (as in maybe I just tried harder to shop, or had a good day the day I went tothe beach)
Jan 3-8 I had a finally had a full 5 day flagyl pulse. A week later I realised I had no spasticity. I have taken requip for 6 years for spasticity at night that keeps me awake. Repeatedly I've tried to stop taking it resulting in miserable nights of pain that I tried to tough out, but never accomplished.
Since I had no noticeable spasticity at bedtime I decided based on Gibbledegooks log to try not taking it. I had NO PROBLEM AT ALL!!. I slept well with no spasticity at all. It has now been 4 nights of no requip with no problems sleeping. In fact many nights I had more spasticity while TAKING the med than I have now . I want to reiterate: I have repeatedly tried to go without this medication and have not been able to . What used to happen was I'd say I'll tough it out. I'd drop off eventually out of fatigue ignoring the spasms then wake up an our or two later with even more severe spasms, sometimes so bad I'd strain my own muscles.
I am driving this point home becasue I want the reader to understand how big a deal this is to not take this. It is a big, significant improvement not wishful thinking or a case of not having tried to quit before.
I can also walk better in the morning though I seem to wear out as the day goes on and get more and more like my usual wobbly self. 3 days ago I walked so well at work that I did not take my cane and I walked a good distance from employee parking to the door, my gait nearly normal (I could see myself approaching the glass door from a good distance-there was almost no limp at all!) and I even chose to walk across the uneven 30' grass median since I felt so sure footed (remember I often use a cane). Now, later that day I tripped on the 3" step going in to the house my walking weak again. I was again wobbly and weak was usual, but in recent memory I have not walked a nearly normal gait not even for a few minutes, let alone for the whole morning. I had thought the nerves gone. My husband commented "hey, you have not walked that well in years!" I've been diagnosed since 93 though I got ill in 91.
I am able to say with confidence that I am responding to the abx protocol.
I've had hints of getting better but nothing so deciseive that it was measurable and objective. All improvements before now were more subjective: i felt more energy, but how do you measure that, and since it's winter, is it because it's cooler? This is objective. Any body can see the reduction in spasticity if you are close enough to me to have noticed it in me already.
I want also to say I was certainly doing poorly in December. I tripped and fell a lot, but it did not feel like it was a "herx" or endotoxin reaction. I just felt worse overall. That was hard. I expected to have a clear get worse get better pattern and it was not like that. It felt more like I just was worse, and that it was unrelated to the flagyl.
So that is my abx log update. I am pleased to be able to know finally that something is getting better.
Blessings
Marie
as noted before I certainly seemed to have more energy but that is so subjective I was not 100% sure this was related to treatment or not. (as in maybe I just tried harder to shop, or had a good day the day I went tothe beach)
Jan 3-8 I had a finally had a full 5 day flagyl pulse. A week later I realised I had no spasticity. I have taken requip for 6 years for spasticity at night that keeps me awake. Repeatedly I've tried to stop taking it resulting in miserable nights of pain that I tried to tough out, but never accomplished.
Since I had no noticeable spasticity at bedtime I decided based on Gibbledegooks log to try not taking it. I had NO PROBLEM AT ALL!!. I slept well with no spasticity at all. It has now been 4 nights of no requip with no problems sleeping. In fact many nights I had more spasticity while TAKING the med than I have now . I want to reiterate: I have repeatedly tried to go without this medication and have not been able to . What used to happen was I'd say I'll tough it out. I'd drop off eventually out of fatigue ignoring the spasms then wake up an our or two later with even more severe spasms, sometimes so bad I'd strain my own muscles.
I am driving this point home becasue I want the reader to understand how big a deal this is to not take this. It is a big, significant improvement not wishful thinking or a case of not having tried to quit before.
I can also walk better in the morning though I seem to wear out as the day goes on and get more and more like my usual wobbly self. 3 days ago I walked so well at work that I did not take my cane and I walked a good distance from employee parking to the door, my gait nearly normal (I could see myself approaching the glass door from a good distance-there was almost no limp at all!) and I even chose to walk across the uneven 30' grass median since I felt so sure footed (remember I often use a cane). Now, later that day I tripped on the 3" step going in to the house my walking weak again. I was again wobbly and weak was usual, but in recent memory I have not walked a nearly normal gait not even for a few minutes, let alone for the whole morning. I had thought the nerves gone. My husband commented "hey, you have not walked that well in years!" I've been diagnosed since 93 though I got ill in 91.
I am able to say with confidence that I am responding to the abx protocol.
I've had hints of getting better but nothing so deciseive that it was measurable and objective. All improvements before now were more subjective: i felt more energy, but how do you measure that, and since it's winter, is it because it's cooler? This is objective. Any body can see the reduction in spasticity if you are close enough to me to have noticed it in me already.
I want also to say I was certainly doing poorly in December. I tripped and fell a lot, but it did not feel like it was a "herx" or endotoxin reaction. I just felt worse overall. That was hard. I expected to have a clear get worse get better pattern and it was not like that. It felt more like I just was worse, and that it was unrelated to the flagyl.
So that is my abx log update. I am pleased to be able to know finally that something is getting better.
Blessings
Marie
Thank you J. I appreciate the support and kindness of everyone using this approach. Your encouragement made it possible to hang on. December was tough. I fell so much. Rica had to literally prop me up personally. thanks Rica! Thanks to Alex for sharing your experience reducing zanaflex. It gave me the thought to go ahead and try it again myself as I noted the reduced spasticity.
it has been important to me to have some kind difference that was measurable and objective. I am really feeling great and kind of "pinch me" about this. For a long time the kind of improvements I noted were so easy to "talk myself out of" subjective and open to interpretation ( more energy? Compared to what?) . If you are reading this and want to know how does she KNOW she's better, now you know. This is a real difference, something not open to interpretation or personally wanting to be better. Now there's two people noting this difference in spasticity. For Alex and I this is part of our healing. NOw in what way could abx by means of side effect or action of the drug on my system alter spasticity that has been entrenched for 6 years in my case? It can't. It does not have that possibility. This must therefore be related to a reduction in bacterial loads, just as the theory suggests.
Marie
it has been important to me to have some kind difference that was measurable and objective. I am really feeling great and kind of "pinch me" about this. For a long time the kind of improvements I noted were so easy to "talk myself out of" subjective and open to interpretation ( more energy? Compared to what?) . If you are reading this and want to know how does she KNOW she's better, now you know. This is a real difference, something not open to interpretation or personally wanting to be better. Now there's two people noting this difference in spasticity. For Alex and I this is part of our healing. NOw in what way could abx by means of side effect or action of the drug on my system alter spasticity that has been entrenched for 6 years in my case? It can't. It does not have that possibility. This must therefore be related to a reduction in bacterial loads, just as the theory suggests.
Marie
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Notdoneyet
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Hi Marie,
I haven't posted for a while, but couldn't resist the chance to congratulate you on your progress. Dropping a prescription drug is a BIG deal. I haven't used baclofen at night for some months now, either. You may have to put up with the bumps and bruises for a while. I had several months of surprise tumbles also. Try not to go too far beyond your capabilities just because you think you can. It's nice to push the envelope, though.
Colin
I haven't posted for a while, but couldn't resist the chance to congratulate you on your progress. Dropping a prescription drug is a BIG deal. I haven't used baclofen at night for some months now, either. You may have to put up with the bumps and bruises for a while. I had several months of surprise tumbles also. Try not to go too far beyond your capabilities just because you think you can. It's nice to push the envelope, though.
Colin
Oh Colin, you too? NO baclofen? Wow, congrats! It is incredible isn't it?
I had a little spasticity last night but once again, less than I had three weeks ago ON the medication. Hey now, did you have to take baclofen again during flagyl pulses or were you just done all at once? just curious if when I pulse It'll come back.
The bruises are a bummer. I was already a lot weaker when I started this protocol and I have not regained strength yet at all except for tha morning walking ability that seems better. I may develop strength now that hte nerves seem to maybe be funcitoning better. We'll see about that
Thanks COlin for reponding
Blessings
Marie
I had a little spasticity last night but once again, less than I had three weeks ago ON the medication. Hey now, did you have to take baclofen again during flagyl pulses or were you just done all at once? just curious if when I pulse It'll come back.
The bruises are a bummer. I was already a lot weaker when I started this protocol and I have not regained strength yet at all except for tha morning walking ability that seems better. I may develop strength now that hte nerves seem to maybe be funcitoning better. We'll see about that
Thanks COlin for reponding
Blessings
Marie