Actually, I don't like writing on the Internet, but I do it in case it helps someone. I couldn't vlog like you.
Sarah
Interrupted's ABX Diary
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SarahLonglands
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Re: Interrupted's ABX Diary
Ah, I think we are taking about the same person.
Actually, I don't like writing on the Internet, but I do it in case it helps someone. I couldn't vlog like you.
Sarah
Actually, I don't like writing on the Internet, but I do it in case it helps someone. I couldn't vlog like you.
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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Interrupted
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Re: Interrupted's ABX Diary
Same reasoning really I guess, but I mean it's so few people who are going to bother looking at them (and one would hope only ones that may find the whole idea interesting) that it's not as weird/daunting as I thought.
Is any of your art online, Sarah? My legs are screwed today and back buzzing like a loon so something nice to look at would brighten it up!
Is any of your art online, Sarah? My legs are screwed today and back buzzing like a loon so something nice to look at would brighten it up!
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
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SarahLonglands
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Re: Interrupted's ABX Diary
That is probably true but more people look at both David's site and mine than I would have thought as far as our logs say. Not that I look at them that often. If you look at my profile,my web site address is there, although I do need to tidy it up a bit and put some new pictures on.
I hope your back and legs start behaving themselves soon!
Sarah
I hope your back and legs start behaving themselves soon!
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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Interrupted
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Re: Interrupted's ABX Diary
I get a Blackpool violin restoration shop from the link with navbar buttons missing? 
Bunch more to add to that, barrel o'laughs today I can tell ya. This damned heavy anxiety and depression is the thing that i'm struggling to cope with. Evil stuff, I hope to gawd it is the abx and not just the next level of MS cog/cerebral progression.
Bunch more to add to that, barrel o'laughs today I can tell ya. This damned heavy anxiety and depression is the thing that i'm struggling to cope with. Evil stuff, I hope to gawd it is the abx and not just the next level of MS cog/cerebral progression.
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
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SarahLonglands
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Re: Interrupted's ABX Diary
How did that happen? Thank you for telling me!!
More later....................Sarah
More later....................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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SarahLonglands
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Re: Interrupted's ABX Diary
All is now sorted out and my pictures are visible!
As for depression being the next stage of MS, the very opposite tends to happen, for example, I thought I just had a trapped nerve and when it freed itself all would be well. I laughed when I really shouldn't and let doors bang behind me as someone else was following on...............Sarah
As for depression being the next stage of MS, the very opposite tends to happen, for example, I thought I just had a trapped nerve and when it freed itself all would be well. I laughed when I really shouldn't and let doors bang behind me as someone else was following on...............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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Interrupted
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Re: Interrupted's ABX Diary
The boldness and contrast of the light is super, certainly lives up to the collection name. Congratulations, beautiful work and a pleasure to view
I think the thing is, it would be easier to cope with if I knew for sure that what's happening is a good thing and is just what should be happening with regards the abx. I've done something similar before where I believed the same and it was actually just progression. So yes, just hoping that all this is the abx doing 'something' good - if it's not i'm in a very bad place and have progressed a rather large step. A little glimmer of proof that something is working on being resolved would be perfect right now, but I know it's not likely even if things are going to plan because it all takes so long. It's a bit like believing in a God, you have no choice but to take it on faith without knowing for sure.
So a summary of right now for anyone following or my own notes: Worst place i've ever been with this. Eyes are screwed, can't hack light or see properly, lower back and spine is shooting off electrics and vibrating constantly which means my legs are very weak and jelly like, l'hermittes bad obviously, brain is mush, can't follow thoughts or speech very well, anxiety and depression overwhelming, fatigue huge as always, hands are concrete, pressure in head boiling over, freezing cold extremities, glands going up and down, sense of being alive and here on planet earth is utterly AWOL (i've had this 24/7 for 12 years and it's awful but jeez it's reaching levels that are soul destroying, if I let myself i'd just be sitting there like a zombie all day/night), can't function much to do the simplest things, fine motor is fairly gone, typing one fingered. So yes, I hope to anything this is not a natural progression and.or the abx riling the MS but not helping, if it is i'm screwed. I'm literally taking every hour and day as it comes with the mantra, "stand up, get through it, tomorrow might be better."
I think the thing is, it would be easier to cope with if I knew for sure that what's happening is a good thing and is just what should be happening with regards the abx. I've done something similar before where I believed the same and it was actually just progression. So yes, just hoping that all this is the abx doing 'something' good - if it's not i'm in a very bad place and have progressed a rather large step. A little glimmer of proof that something is working on being resolved would be perfect right now, but I know it's not likely even if things are going to plan because it all takes so long. It's a bit like believing in a God, you have no choice but to take it on faith without knowing for sure.
So a summary of right now for anyone following or my own notes: Worst place i've ever been with this. Eyes are screwed, can't hack light or see properly, lower back and spine is shooting off electrics and vibrating constantly which means my legs are very weak and jelly like, l'hermittes bad obviously, brain is mush, can't follow thoughts or speech very well, anxiety and depression overwhelming, fatigue huge as always, hands are concrete, pressure in head boiling over, freezing cold extremities, glands going up and down, sense of being alive and here on planet earth is utterly AWOL (i've had this 24/7 for 12 years and it's awful but jeez it's reaching levels that are soul destroying, if I let myself i'd just be sitting there like a zombie all day/night), can't function much to do the simplest things, fine motor is fairly gone, typing one fingered. So yes, I hope to anything this is not a natural progression and.or the abx riling the MS but not helping, if it is i'm screwed. I'm literally taking every hour and day as it comes with the mantra, "stand up, get through it, tomorrow might be better."
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
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SarahLonglands
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Re: Interrupted's ABX Diary
About Avenues of Sight, thank you! 
About you: I pity you for what you are going through at present but can't really say more because I don't really remember my first few weeks of treatment. I do remember tat I was typing with one finger, though, and that my mother that Christmas sent me a card depicting a painting done by a foot and mouth artist. I told her off and she promised not to repeat it, so I got a different picture by a foot and mouth artist the next year! Oh yes, I do remember that I became more aware of my l'hermittes until the feeling went. I am not sure if I had it before but didn't notice or if it came then. It worried me though: I thought maybe this wasn't working even though in other respects I had by then improved. Well, everyone was saying that I was talking better at least.
In case you haven't seen it, this page might be a help:
http://www.davidwheldon.co.uk/relapse_pseudo.html
About you: I pity you for what you are going through at present but can't really say more because I don't really remember my first few weeks of treatment. I do remember tat I was typing with one finger, though, and that my mother that Christmas sent me a card depicting a painting done by a foot and mouth artist. I told her off and she promised not to repeat it, so I got a different picture by a foot and mouth artist the next year! Oh yes, I do remember that I became more aware of my l'hermittes until the feeling went. I am not sure if I had it before but didn't notice or if it came then. It worried me though: I thought maybe this wasn't working even though in other respects I had by then improved. Well, everyone was saying that I was talking better at least.
In case you haven't seen it, this page might be a help:
http://www.davidwheldon.co.uk/relapse_pseudo.html
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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Interrupted
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Re: Interrupted's ABX Diary
You're welcome. I remember trying to get that sort of strength of sky contrast in a somewhat apocalyptic painting I was doing once and failing miserably, haha. It never got finished in the end because of it, so you have my kudos!
It's tricky really to say, I know, because everybody's illness is different. Some people are very mobility problem centred and others, like me until recently, are more CFS/cerebral damage centred, with a majority in between. So symptoms or responses are never going to match up to be able to say, "well that's ok" or, "that's normal". Seems to me that some feel nothing until the Flagyll comes into play, and others are thrown in the deep end from the off. I can say for sure that nothing has improved but then i'm not expecting it to within a month, however I suppose I should expect the initial wave to be strong and overwhelming if the abx are hitting the nail on the head (so to speak), in which case this is an interesting and very telling response. If by some miracle this does help me, it's playing paint by numbers in herx/endo crisis terms. So for now the only answer is the, "just stand up, get through it..."
It's tricky really to say, I know, because everybody's illness is different. Some people are very mobility problem centred and others, like me until recently, are more CFS/cerebral damage centred, with a majority in between. So symptoms or responses are never going to match up to be able to say, "well that's ok" or, "that's normal". Seems to me that some feel nothing until the Flagyll comes into play, and others are thrown in the deep end from the off. I can say for sure that nothing has improved but then i'm not expecting it to within a month, however I suppose I should expect the initial wave to be strong and overwhelming if the abx are hitting the nail on the head (so to speak), in which case this is an interesting and very telling response. If by some miracle this does help me, it's playing paint by numbers in herx/endo crisis terms. So for now the only answer is the, "just stand up, get through it..."
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
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SarahLonglands
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Re: Interrupted's ABX Diary
I'd like to see a photo of your apocolyptic painting because it is probably better than you think.
Everyone's illness is different: some people are obsessed with mobility but other's like me, are obsessed with a properly functioning mind. Also sometimes other people will notice improvements before you do. David, with his neuropathology training noticed the improvement in my reflexes. I didn't for some reason..............Sarah
Everyone's illness is different: some people are obsessed with mobility but other's like me, are obsessed with a properly functioning mind. Also sometimes other people will notice improvements before you do. David, with his neuropathology training noticed the improvement in my reflexes. I didn't for some reason..............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.