I have had a 2nd MRI scan. The first was in Aug 06, a couple of weeks after having my first obvious MSi problem. Prior to that I had experienced right arm weakness, that I had thought was due to RSI, but was probably MS related.
My scan results second time round are basically the same (no significant alterations and no significant new lesions). This would suggest that the lesions on my scan are fairly old (as they are unchanged), but it provokes questions in me.
Surely my attack in Aug 06 (after a severe summer flu, the primary symptom was exhaustion), would have been the result of new lesions?
If I didn't develop any new lesions in summer 06, what caused my MS symptoms?
Since Aug 06 my problems with my right leg/foot have been there continuously (no real remittance), yet there are times when I play tennis (one constant activity that makes a good measure) when I am moving well and other times when I can hardly walk. I say there is no remittance, because when I go for a walk after 30 minutes I start dragging my right foot/leg and the effort to walk increases (I feel like I am walking through sand).
I don't understand my condition or what the history is and it is therefore difficult to know whether the CAPi is actually of value or not (for me). Since my dx, the time I felt the best was Jan 07 after a few months of dieting and exercise. On CAP I have periods of feeling great, but I don't know if this has anything to do with CAP, though it could be just not taking Flagyli as presumably that makes people feel crap anyway.
Currently feeling a bit frustrated and uncertain. I wish there was someone who I could discuss my condition with who understood MS, the CAP and MRIs.
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Malcolm
Wheldon Protocol since July 07. Doxyii 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi Aug 06.
Malcolm Doxyi 200mg since 13
Malcolm
Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi Aug 06.
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Malcolm
Wheldon Protocol since July 07. Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi Aug 06.
Okay, somebody help,
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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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
Yes I recall that also,
Yes I recall that also, early signs may not show up and early stage healing may also not show up. We are talking 6 months of treatment here?
I think like Mac that no change is good...
I know that uncertainty is difficult to live with... but as I said to Ella yesterday, 'Maybe's' is sometimes all we have...
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006
Six months does seem a bit
Six months does seem a bit short. Based on what I've read I'm not expecting anything much for at least 12 months. If the scan was showing new lesions then I'd be a bit worried but as there are none it may well mean you've halted progression. Give it time to repair the damage that's been done. I suspect at the moment it's still fighting the bad guys.
Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.
NACi 2400mg. All supplementsi. Doxyi 200mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.
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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.
NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008
I would look at this as a
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This is a logic problem that
This is a logic problem that needs sorting out. It's also a problem of neuros (in general) placing so much weight on MRIs as though the lesions they display are dynamic and causative. That's because they don't really know what to do with MSi, so they "watch" it. It seems like the blobs (lesions) they are watching are the culprits. This is proper thinking: lesions = scarring/calcification following destructive inflammationi and/or lesions = areas of current inflammation, interpreted to be one or the other by gad-enhancement or nonenhancement. Lesions are not causative; they are indicators.
I need help from anyone else on the site who knows where to find the research that reveals that the infection has already started causing damage before any lesions show up on imaging, that the lesions are latecomers. Lesions are not harbingers nor agents of disease---they are tattletales.
So what bearing does that have on your illness history and imaging history? You had some MS symptoms over time that you had attributed to RSI, and then you had the arm weakness. You ended up getting an MRI which showed lesions. I'm trying to relate to you that your MS problems pre-dated detectable lesions, and it was the infection that caused the inflammation that caused the MS symptoms and the scarring that showed up as lesions on your MRI. Some on the site have reported some very minute shrinkage of lesions, but you can expect that once you've got them, they are there for life. Again, the lesions themselves are not the culprits.
The way of the journey is not a slow, smooth ascent. It's a roller coaster ride over peaks and through valleys. If you are having periods of feeling great while on the CAPi, savor it and know that it's a sign of better times on the way. Best wishes,
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAP since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Joyce, are you refering to
Joyce, are you refering to this paper submitted by Marie Rhodes, in which she speculated on a different model for MS than the autoimmune one...
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006
Thanks Michele, I can't
Thanks Michele, I can't remember if that was it, but Marie's piece and the links work very well.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Joyce and Malcolm, I
Joyce and Malcolm, I have no idea where to look for such information: neurologists think they know everything and should just be believed and anti-neuros think that lesions just confuse matters.
I have an area around my peri-vascular region consisting of ancient, unchanging calcified masses, the true lesions which will never change and look as though they have been there even before I had my first symptom at 24. What came first I have no idea because I was 44 when I eventually had my first MRI. What I do know is that for much of that time I was symptom free. I had my first really bad relapse when I was in my early thirties, but eve then, it got better within a few weeks. I was in my late thirties before I started getting incomplete remissions, then things started to get rapidly worse.
My first MRI showed this old area surrounded by many new, bright areas. This was to have been my one and only MRI because the neuro had decided that there was no hope for me and told DW to "make arrangements." Whilst he was making the wrong sort of arrangements I took it upon myself to email the man that I wasn't going to go and see the MSi nurse because this was all he said he could do. A few days later DW brought back the first of many packs of doxycycline and a few days later we emailed Ram Sriram who wrote back straight away with some helpful advice.
The following three MRIs all showed improvement, nothing new and eventually some of the newer, brighter lesions disappearing. Since there was very little difference between the third and fourth we left it at that because the old machine was about to be mothballed and it would be more difficult to compare results on different machine. It was easy to tell that I was getting better even if I had never had another MRI though. One reason for this is that I was so bad to start with, which must make it more difficult for other people. No getting worse, no progression, must mean as much as no new lesions, though, maybe more.
Malcolm, I seem to remember that your GP agreed to prescribe for you, so you didn't need to come up to Bedford. You can always at the very least write to David who must have seen more MRIs than most non neurologists or radiologists and who did rain in neuropathology and neurology before opting for microbiology. but I certainly wouldn't give up just because you are not sure what CAPi is doing for you: you don't want to suddenly find out in the wrong way...........Sarah
An Itinerary in Light and Shadow by a real "Painter of Light"...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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Malcolm, you are a relative
Malcolm,
you are a relative "newcomer" to this treatment. I think it is absolutely incredible that you haven't had worsening as evidenced by your feeling of wellness, activity levels & recent MRI.
I do not complain much about the fact that when I get times when I can do things, I tend to over do, my legs turn to tree stumps & my body aches. I also get a return of headaches until I can rest up & earn some recovery.
I like to think about the good things that have happened since my being on CAPi; like IBSi mostly gone, headaches mostly gone, migraines gone, overall pain levels down 30%, brain fog down 50% to name a few things. These things didn't suddenly happen, it has been a long timelong of 10 months now.
congrats on your recovery to date.
CFIDSi/ME 26yrs, FMSi,
IBS, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8___________________________________________________________
CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 daysI don't think these are the
I don't think these are the specific articles you were referring to, but they do discuss the fact that cognitive impairment already exists at the start of MSi and is not correlated with lesion load.
CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day),
250 mg Zithi (3 x week)ceased 3/2008, 150 mg Roxi (2 x day) starting 3/2008. Seventh pulse metronidazolei completed 4/11/2008.___________________________________________________________
CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week). Sixteenth pulse metronidazolei + INHi completed 12/20/2008.
I just have the abstract for
I just have the abstract for this one, but the title seems self-explanatory:
Clinical presentation of primary progressive multiple sclerosis 10 years after the incidental finding of typical magnetic resonance imaging brain lesions: the subclinical stage of primary progressive multiple sclerosis may last 10 years. McDonnell, G.V. et al. Mult Scler. 2003 Mar;9(2):204-9
CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day),
250 mg Zithi (3 x week)ceased 3/2008, 150 mg Roxi (2 x day) starting 3/2008. Seventh pulse metronidazolei completed 4/11/2008.___________________________________________________________
CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week). Sixteenth pulse metronidazolei + INHi completed 12/20/2008.
Thank you all for your
Thank you all for your thoughts and comments. I think that I was disappointed by my MRI as I had hoped to see some improvement to validate the CAPi. I had assumed that my lesions were fairly new, but as they have not changed perhaps they have been there for years and therefore are not a good indication of my recovery or future problems.
It is probably the case that I have been suffering from MS for years without realising it and that my first major attack came in Aug 06.
Tennis is my test for myself, I would probably be happier if I stopped, but I am defiant. When I feel great I can move well enough and my play is good enough, but when I do not feel good, my legs are dead weights and my movement is poor and I feel embarrassed by my poor play.
It is difficult to understand and anticipate when I will feel good or not good, it is not so clearly related to taking Flagyli for me.
Joyce, thank you for your explanation of lesions, my question really arises from the fact that I had an MS attack in Aug 06 (first major one) and I had my first MRI a few weeks later, so I would have thought that some of those lesions would have been new and would have reflected that episode, but as my MRI is unchanged it makes me wonder.
Sarah, I am certainly not giving up! But it is at times hard to stick to a regime that no one (apart from my cyber friends :) ) believes in. I did email David to ask whether he would be willing to look at my scans, but he didn't feel he could offer much insight.
Malcolm
Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MS Aug 06.
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Malcolm
Wheldon Protocol since July 07. Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi Aug 06.
Malcolm, Impatience and
Malcolm, Impatience and doubt will become old obnoxious friends while you're on the CAPi. I'm still learning how to blow them off when they loom.
hd, Thanks for the terrific help. I don't know if Malcolm got as much from those links as I did, since they are meaningful to an area I'm investigating this week.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAP since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.