Update at 6 weeks...one month of doxy and two weeks with added azith as well. I am doing a little PT to strengthen my clumsy leg. This is good, if the nerve recovers at all it needs stimulation to work right. I've noticed that I have wierd tingles that are new for me. I tingle in waves from the top down like l'hermittes but in single areas, like from my hip to my knee when I move. I have lots of repetitive zing,,,zing,,,zing,,,tingly feelings in the lumbo-sacral area...bizaar! But then I have sciatica and hoped this would get better so maybe this is coming out to be true for me huh? I also keep having as I adjust my position in bed tingles that take off down one side. It is most peculiar.
I'm not a smidge better yet in terms of motor function. I did work a whole day yesterday and was not wiped out at the end, though this was not exemplified by better walking at the end, just an unusual feeling that I'd like to do something else; a sort of restlessnes. a fluke? we'll soon see. Rica, I'm remembering you got worse for a while and now look at how you do! so I'm not worried. Next year I can take my quilt to the fair...
Marie
Marie's abx log
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Katman
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Marie
One month for me would have been the end of Oct., 2004. I don't remember ANY tingling or any other changes at all. Those of us on this site have an idea of what might go on and can look for it. At that time I believe in retrospect that I was only getting worse as far as walking and mental sharpness. However, I also knew even then that abx was the only hope- we all know that this is the closest to a cure that exists. I also have never done things halfway and decided to do all of this regimen for a good year trial- if it was a great inconvenience, so be it. I had nothing that was more pressing and I'm not one to put the blame on someone or something else first if I fail. So far, as far as I can see from this site, everyone who has given this a fair trial has succeeded- the degree of recovery is all that remains to be seen. I think, if attitude, determination, and preparatory research have anything to do with it, you will be on the victors side. That IS part of it, of course- the discipline of a schedule- taking all this stuff, both the pills and the far-reaching patience. Not always easy, but once there is even a glimmer of light, it is unstoppable.
End Lecture #96
Rica
One month for me would have been the end of Oct., 2004. I don't remember ANY tingling or any other changes at all. Those of us on this site have an idea of what might go on and can look for it. At that time I believe in retrospect that I was only getting worse as far as walking and mental sharpness. However, I also knew even then that abx was the only hope- we all know that this is the closest to a cure that exists. I also have never done things halfway and decided to do all of this regimen for a good year trial- if it was a great inconvenience, so be it. I had nothing that was more pressing and I'm not one to put the blame on someone or something else first if I fail. So far, as far as I can see from this site, everyone who has given this a fair trial has succeeded- the degree of recovery is all that remains to be seen. I think, if attitude, determination, and preparatory research have anything to do with it, you will be on the victors side. That IS part of it, of course- the discipline of a schedule- taking all this stuff, both the pills and the far-reaching patience. Not always easy, but once there is even a glimmer of light, it is unstoppable.
End Lecture #96
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.
Yes, Mrs Katman. I'll write "I will finish" 50 times on the board 
. You are an inspiration! A big dose of patience is necessary for certain, but you know what? We are lucky cause we have proof it works, and support. Thank you to those of you who went before and made it a clear path. Thank you for continuing to share your inspirational stories. I hope people make gains for years and continue to say I got EVEN better....
My face tingles too, starting today. I tingle all over. I feel like a gong that's been struck. I did not gain much strength in the muslces attempted to strengthen via PT so we are getting a leg brace of some kind to keep me from falling
. Now I fully plan to closet that thing in a couple of months with my secret weapon.
Woe is me, there's not one measurable thing to report though! Only that I tingle! If we could measure tingling, I'd have a measurable report. Who's that nut that keeps asking for measurable reports?
Remember I have rheumatoid arthritis also? My joints hurt more than usual for those coming after me who wonder about the joint angle. they ache like a little RA flare up, some more than others (wrist knee both feet and neck)
I, like you Rica have been on this SPMS track for a while and am quite challenged, with absolutely nowhere else to go in terms of treatment unless I want novantrone. The past 6 months have been very quickly down for me. So fast I do not even have a good grasp of what I can do or not. I'm still surprised if I fall, like "oh?! how did I get here?!" and people say "we THOUGHT you looked wobbly..." 6 weeks is early days.
Thank you for the support fellow boxers! We'll knock out CPn yet!
Blessings
Marie
. You are an inspiration! A big dose of patience is necessary for certain, but you know what? We are lucky cause we have proof it works, and support. Thank you to those of you who went before and made it a clear path. Thank you for continuing to share your inspirational stories. I hope people make gains for years and continue to say I got EVEN better....My face tingles too, starting today. I tingle all over. I feel like a gong that's been struck. I did not gain much strength in the muslces attempted to strengthen via PT so we are getting a leg brace of some kind to keep me from falling
. Now I fully plan to closet that thing in a couple of months with my secret weapon. Woe is me, there's not one measurable thing to report though! Only that I tingle! If we could measure tingling, I'd have a measurable report. Who's that nut that keeps asking for measurable reports?
Remember I have rheumatoid arthritis also? My joints hurt more than usual for those coming after me who wonder about the joint angle. they ache like a little RA flare up, some more than others (wrist knee both feet and neck)
I, like you Rica have been on this SPMS track for a while and am quite challenged, with absolutely nowhere else to go in terms of treatment unless I want novantrone. The past 6 months have been very quickly down for me. So fast I do not even have a good grasp of what I can do or not. I'm still surprised if I fall, like "oh?! how did I get here?!" and people say "we THOUGHT you looked wobbly..." 6 weeks is early days.
Thank you for the support fellow boxers! We'll knock out CPn yet!
Blessings
Marie
Hi Marie
I am SPMS too, with a very dodgy leg.
I have been on the abx since August this year. When I was diagnosed I changed my diet to the Swank diet (March this year). This has made the most difference to me, and stopped all the tingling I was getting - it was everywhere like you mention. It also sdtopped the leg twitches I was getting at night.
I am also on LDN by the way!
(I went on the abx because it would be great to get the feeling beck in my leg. It's not all there.)
Anyway, just thought I would mention the diet to you. Not sure if you are already on that, but that is what really helped me.
I don't expect any noticeable changes from the abx just yet. I am giving it 6 months!
Best wishes
J.
I am SPMS too, with a very dodgy leg.
I have been on the abx since August this year. When I was diagnosed I changed my diet to the Swank diet (March this year). This has made the most difference to me, and stopped all the tingling I was getting - it was everywhere like you mention. It also sdtopped the leg twitches I was getting at night.
I am also on LDN by the way!
(I went on the abx because it would be great to get the feeling beck in my leg. It's not all there.)
Anyway, just thought I would mention the diet to you. Not sure if you are already on that, but that is what really helped me.
I don't expect any noticeable changes from the abx just yet. I am giving it 6 months!
Best wishes
J.
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gibbledygook
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good luck et bon courage Marie
Good luck with the abx. I experienced an immediate change in foot burn after starting minocycline in November 2004 but then nothing else changed very much and the foot burn returned on minocycline alone. Then I started the doxicycline/roxithromycin combo in February 2005 or April 2005 if you only count non-internet purchases. Nothing much happened until starting pulses of flagyl which recently made me worse before getting dramatically better. Improvements have taken a long time but they were worth the wait. Bon courage!
Ok 8 weeks of abx. Two things.
Massage. I get it weekly and have for about a year due to the tightness of my sort of spastic muscles needing some help to keep some semblance of flexibility. Before then I did massage about monthly. In all that time it's been a struggle because I am so stiff and "rock hard" (in spasm really). I have many trigger points, myofascial injuries and constantly hurt something new. If it can be torn or strained, I've done it! Well, my therapist had a vacation of a couple weeks and when we worked last friday she said "Wow! You are so loose, the tissue is giving way to the massage like a normal person's! Something is way different!" She did a deep treatment and then I was sore, but feeling more flexible than I have for a long time. SO wanting more of a good thing I went in 4 days later and she was able to get deep, deep into my hip and work on scar tissue there which she has never been able to get to due to the muscles being too tight and hard. My sciatica is better than it's been in 6 years so part of the sciatic pain was due to myofascial issues and piriformis scar tissue!
This is VERY good. And it's objective, meaning someone other than me has a professional opinion about my body based on what she can see.
and two, I helped myself to the food I wanted when we went out last week. I've been in food prison for many years and I just let myself out.
Hey, if it's CPN then it's not fat and "micro strokes", except to the extent that eating a high fat diet is generally bad for healing etc (which it is, so I'll be sensible). Halibut with hollandaise, potato with sour cream and butter and bacon, and a sourdough roll with butter. YUM! I felt happy and relaxed and peaceful. And normal! It was great! ANd I did not have any new symptoms of weakness afterwards or the next day so it was fine.
I am not noticing any difference yet in terms of function that is measurable, but with those soft loose muscles I am definitely more flexible and functional. Also I slept better with less pain last couple of nights. I bet when I get to flagyl I'll be awake in the night again going "ouch", but for now I'm better and have crossed the line on enduring the arthritis flareup that came with the abx. I went to the mall yesterday to get my husband running shoes and as usual parked close in the disabled. I walked around with my cane for about 15 minutes to look for a cute shirt I saw in the catalogue, didn't see it, went to shoes and sat down tired. As I left the store I was VERY carefully walking that foot was dropsy as it gets, every step a careful placement my whole concentration placed in the floor. I wanted to go up the escalator to the sale of espresso machines but could not. I felt I'd fall should I keep at it. So this is about the same as I've been in recent times in terms of function. No improvements with endurance yet. But only 8 weeks and no flagyl yet so I am pleased overall based on the reduction in sciatic pain and increased flexibility.
Marie
Massage. I get it weekly and have for about a year due to the tightness of my sort of spastic muscles needing some help to keep some semblance of flexibility. Before then I did massage about monthly. In all that time it's been a struggle because I am so stiff and "rock hard" (in spasm really). I have many trigger points, myofascial injuries and constantly hurt something new. If it can be torn or strained, I've done it! Well, my therapist had a vacation of a couple weeks and when we worked last friday she said "Wow! You are so loose, the tissue is giving way to the massage like a normal person's! Something is way different!" She did a deep treatment and then I was sore, but feeling more flexible than I have for a long time. SO wanting more of a good thing I went in 4 days later and she was able to get deep, deep into my hip and work on scar tissue there which she has never been able to get to due to the muscles being too tight and hard. My sciatica is better than it's been in 6 years so part of the sciatic pain was due to myofascial issues and piriformis scar tissue!
This is VERY good. And it's objective, meaning someone other than me has a professional opinion about my body based on what she can see.
and two, I helped myself to the food I wanted when we went out last week. I've been in food prison for many years and I just let myself out.
Hey, if it's CPN then it's not fat and "micro strokes", except to the extent that eating a high fat diet is generally bad for healing etc (which it is, so I'll be sensible). Halibut with hollandaise, potato with sour cream and butter and bacon, and a sourdough roll with butter. YUM! I felt happy and relaxed and peaceful. And normal! It was great! ANd I did not have any new symptoms of weakness afterwards or the next day so it was fine.
I am not noticing any difference yet in terms of function that is measurable, but with those soft loose muscles I am definitely more flexible and functional. Also I slept better with less pain last couple of nights. I bet when I get to flagyl I'll be awake in the night again going "ouch", but for now I'm better and have crossed the line on enduring the arthritis flareup that came with the abx. I went to the mall yesterday to get my husband running shoes and as usual parked close in the disabled. I walked around with my cane for about 15 minutes to look for a cute shirt I saw in the catalogue, didn't see it, went to shoes and sat down tired. As I left the store I was VERY carefully walking that foot was dropsy as it gets, every step a careful placement my whole concentration placed in the floor. I wanted to go up the escalator to the sale of espresso machines but could not. I felt I'd fall should I keep at it. So this is about the same as I've been in recent times in terms of function. No improvements with endurance yet. But only 8 weeks and no flagyl yet so I am pleased overall based on the reduction in sciatic pain and increased flexibility.
Marie
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gibbledygook
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Wow - 8 weeks is nothing!! I noticed improvements in foot burn when I'd taken minocycline - that was almost instant but after a while on just minocycline the foot burn returned. I think I've only really noticed things improving on doxicylcine and roxithromycin at least 6 MONTHS into the treatment. Keep going. Fingers crossed! Reaally hope you start feeling stronger soon.
Hi! Thank you for responding Alex! I am feeling like I get a bit of smptom after adding something then it goes away fairly soon. As I've not done flagyl yet, I've not had any big reactions, nor have I had any big recovery of functions. Or honestly any recovery to talk about yet other then that wonderful reduction of muscle apams and tightness noted during massage, which is important, but it's walking I'd most like to see improve. I'm going to be patient though! It seems to me like after tallying results people need to get to their 8th flagyl pulse or so to really get ahead of things....so I have a ways to go for that.
BUT I added NAC last week. Boy I tell you I did react to that. I felt really unwell. I was nauseous and had no apetite and was just off. My nose ran and I coughed and ached all over and had a bad headache. Definitely a flu like reaction. After a week I am less reacting than I was, though I still feel unwell. I've not been to the gym at all in over a week. I'll try it tomorrow.
Blessings!
Marie
BUT I added NAC last week. Boy I tell you I did react to that. I felt really unwell. I was nauseous and had no apetite and was just off. My nose ran and I coughed and ached all over and had a bad headache. Definitely a flu like reaction. After a week I am less reacting than I was, though I still feel unwell. I've not been to the gym at all in over a week. I'll try it tomorrow.
Blessings!
Marie
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SarahLonglands
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NAC seems to do that. Coming to it quite late in the day, treatment wise, I was surprised at how many EBs I still had lurking in the corners. I thought I'd got rid of everything: I look so healthy and my hair and nails are growing so rapidly and I have so much more energy, but I must have been wrong. Still, at least they aren't the things that do the damage.
Now, go easy at the gym, though, concentrate on your weekly massage. That really seems to be doing something. Your walking will improve eventually and remember that people often don't see improvements themselves until someone else points them out. One day your husband will say "But Marie, you couldn't do that a month ago!"
Sarah
Now, go easy at the gym, though, concentrate on your weekly massage. That really seems to be doing something. Your walking will improve eventually and remember that people often don't see improvements themselves until someone else points them out. One day your husband will say "But Marie, you couldn't do that a month ago!"
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.
HI guys! Here I am at around 12 weeks. I have been quiet because I have not been sure I was getting much better. But guess what? I can walk better! Measurable coming next
Rica said on her thread: "My well-being is at a new level, enhanced by a particularly vivid dream of running. "
Well Rica I have this dream too! I think I had this dream because I went to the gym yesterday and I worked out for 20 minutes on the elipse, my old standby normal time. After I got done though I could STILL walk OK and I could lift up my weak leg 2 -3 inches!! Olden days it could lift only 1/2 inch just barely enough to clear the floor after the elipse. (I fell about 5 weeks ago and my knee-my GOOD knee- is still hurting
)I could not believe it as I walked out of the gym. I had this unreal sense that it could not be happening-I was walking fairly well meaning that my foot cleared the ground every time with every step! I carried out my bag and did not hang on either! I had noticed lately a little less struggle walking in general but I was not certain. I've been so tired and weak I have not been to the gym in weeks. NAC is really a strong treatment for me. But the gym is my measurable thing and I am due to get back into the workouts so I went. I've done the elipse at the gym for years.
just to make sure I was not fooling myself I stopped at the grocery and shopped. I walked OK ish there also, foot clearing the ground. I even, just for fun, went back to the produce department again after going to bread when I realized I wanted a tomato. Olden days a forgotten item stays forgotten. NO energy to renavigate the store for something like that.
Then I drove home. My leg switched pretty easily from brake to gas, and I unloaded the car when I got home and my bad leg cleared the step into the house and only barely caught the lip. Did I collapse into an exhausted heap? NO I cooked dinner and did a load of laundry. My sweet husband THEN invited me out to see the full moon on the beach with our doggie (border collie) and I was thrilled to say, unrestrained, Yes! I'd love it and I <i>really meant it too</i>. I was not inside my head going "oh no! I'm tired but he should be able to have his wife go along once in a while, I'd best go..." then grit my teeth and paste on a smile and wait for it to end so I can rest as I might have in the past.
Ok, so my life is different now. These changes are subtle and hard to notice unless you are looking closely. If I'd not bothered to measure how high my leg could lift after the gym, I'd not know now that it goes an inch and a half higher now. I'd just be thinking gee, I seem a little better. And I have not had flagyl yet.!! Bless every one of you who are mentoring and helping those of us behind with your encouraging words!
I encourage anyone starting out to measure things they can think of in their life so they can see when they do better. The changes are gradual and subtle. IT's hard to know, and if you are worried about fooling yourself you'll doubt it all the time. Do yourself a favor and make a journal entry telling yourself how you do. You'll forget if not.
Blessings to everyone! What a great club!
Marie
Rica said on her thread: "My well-being is at a new level, enhanced by a particularly vivid dream of running. "
Well Rica I have this dream too! I think I had this dream because I went to the gym yesterday and I worked out for 20 minutes on the elipse, my old standby normal time. After I got done though I could STILL walk OK and I could lift up my weak leg 2 -3 inches!! Olden days it could lift only 1/2 inch just barely enough to clear the floor after the elipse. (I fell about 5 weeks ago and my knee-my GOOD knee- is still hurting
)I could not believe it as I walked out of the gym. I had this unreal sense that it could not be happening-I was walking fairly well meaning that my foot cleared the ground every time with every step! I carried out my bag and did not hang on either! I had noticed lately a little less struggle walking in general but I was not certain. I've been so tired and weak I have not been to the gym in weeks. NAC is really a strong treatment for me. But the gym is my measurable thing and I am due to get back into the workouts so I went. I've done the elipse at the gym for years. just to make sure I was not fooling myself I stopped at the grocery and shopped. I walked OK ish there also, foot clearing the ground. I even, just for fun, went back to the produce department again after going to bread when I realized I wanted a tomato. Olden days a forgotten item stays forgotten. NO energy to renavigate the store for something like that.
Then I drove home. My leg switched pretty easily from brake to gas, and I unloaded the car when I got home and my bad leg cleared the step into the house and only barely caught the lip. Did I collapse into an exhausted heap? NO I cooked dinner and did a load of laundry. My sweet husband THEN invited me out to see the full moon on the beach with our doggie (border collie) and I was thrilled to say, unrestrained, Yes! I'd love it and I <i>really meant it too</i>. I was not inside my head going "oh no! I'm tired but he should be able to have his wife go along once in a while, I'd best go..." then grit my teeth and paste on a smile and wait for it to end so I can rest as I might have in the past.
Ok, so my life is different now. These changes are subtle and hard to notice unless you are looking closely. If I'd not bothered to measure how high my leg could lift after the gym, I'd not know now that it goes an inch and a half higher now. I'd just be thinking gee, I seem a little better. And I have not had flagyl yet.!! Bless every one of you who are mentoring and helping those of us behind with your encouraging words!
I encourage anyone starting out to measure things they can think of in their life so they can see when they do better. The changes are gradual and subtle. IT's hard to know, and if you are worried about fooling yourself you'll doubt it all the time. Do yourself a favor and make a journal entry telling yourself how you do. You'll forget if not.
Blessings to everyone! What a great club!
Marie
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Notdoneyet
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Hi Marie,
Before I lost the ability to run, and I was the centrefielder with the best wheels in the league, I had a recurring dream that I was trying to get away from someone or something and kept falling down. After I could no longer run, but even before antibiotics, I began dreaming of being in full flight, unencumbered. I am a little sceptical, but still hopeful, that I may run again. Your recovery sounds familiar and I'm sure those moments of better mobility will become permanent with time.
Colin
Before I lost the ability to run, and I was the centrefielder with the best wheels in the league, I had a recurring dream that I was trying to get away from someone or something and kept falling down. After I could no longer run, but even before antibiotics, I began dreaming of being in full flight, unencumbered. I am a little sceptical, but still hopeful, that I may run again. Your recovery sounds familiar and I'm sure those moments of better mobility will become permanent with time.
Colin
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SarahLonglands
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Hi, Marie,
I thought you had been unnaturally quiet this last little while! I'm glad that are doing so well now, but beware that you might have a downturn for a while when you start the flagyl. I might not, by and large have experienced some of the worst effects that others have gone through, apart from my third pulse, but it certainly threw my walking. You'd best warn your husband, though, because he might be quite alarmed. It won't last, though and I guess you will soon be overtaking me in your ability to manoeuvre round the aisles of the grocery store for that one last tomato. Actually that won't be difficult because I still don't like small, enclosed spaces. One day I will visit and we will have a race on the beach!
Sarah
I thought you had been unnaturally quiet this last little while! I'm glad that are doing so well now, but beware that you might have a downturn for a while when you start the flagyl. I might not, by and large have experienced some of the worst effects that others have gone through, apart from my third pulse, but it certainly threw my walking. You'd best warn your husband, though, because he might be quite alarmed. It won't last, though and I guess you will soon be overtaking me in your ability to manoeuvre round the aisles of the grocery store for that one last tomato. Actually that won't be difficult because I still don't like small, enclosed spaces. One day I will visit and we will have a race on the beach!
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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Katman
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Me, too Me,too
Can I come? I would rather race but I could just watch.
Colin, Sarah, Marie- you must have a cameraperson- preferably one who has (had?) MS.. This reunion, first meeting, or summit by whatever name is bound to be historical. By then maybe we will have MRIs that have " vanished lesions" and can plan the Olympics for Former MS Sufferers.
Marie, I have chills brought on by your fabulous progress. To someone reading this from outside, it sounds like a bunch of teenagers swooning but I remember so well my own realization of my own version of your recounting this event I'm sure you were delighted when your racked body responded to massage as it did but that trip and ending the day with a romantic encounter that you could actually enjoy is truly thrilling Yes, progress is slow but steady with steps back and then steady again is the important part.
Rica.
Colin, Sarah, Marie- you must have a cameraperson- preferably one who has (had?) MS.. This reunion, first meeting, or summit by whatever name is bound to be historical. By then maybe we will have MRIs that have " vanished lesions" and can plan the Olympics for Former MS Sufferers.
Marie, I have chills brought on by your fabulous progress. To someone reading this from outside, it sounds like a bunch of teenagers swooning but I remember so well my own realization of my own version of your recounting this event I'm sure you were delighted when your racked body responded to massage as it did but that trip and ending the day with a romantic encounter that you could actually enjoy is truly thrilling Yes, progress is slow but steady with steps back and then steady again is the important part.
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.
