5 days of doxy

A forum for the discussion of antibiotics as a potential therapy for MS

Postby agatha » Fri Dec 17, 2010 2:23 pm

Hi Robbie
I'm in the same position - had my last MRI 18 months before I started abx so it would be difficult to assess the results of an MRI now even if my neuro would pay for one! It will be very interesting to see your next one - fingers crossed for you.
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Postby SarahLonglands » Sat Dec 18, 2010 7:37 am

8O !!! my mistake............doing too much!
Last edited by SarahLonglands on Sun Dec 19, 2010 5:55 am, edited 2 times in total.
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 robbie » Sat Dec 18, 2010 7:41 am

Thanks Agatha i am in my fifth month now of antibiotics , that MRI really doesn't mean much, the two new lesions bother me but maybe they were formed before. There was nothing active at the time of the MRI. I have had certain things improve enough to keep me going on this so will see.
Hard to know.....
Had ms for over 19 years now.
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Postby SarahLonglands » Sun Dec 19, 2010 5:56 am

Sorry Robbie for above error but I like your sense of humour: Air borne toxic event!

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 robbie » Mon Dec 20, 2010 7:04 am

It's funny how people react to you taking antiobiotics for treating MS. They think it's great that your trying but you can tell inside their thinking what the hell is he doing that for. There are so many symptoms of MS that people don't even relize you have,like earlier on in this disease if you were just sitting no one would know there was anything wrong with you even though you were a mess inside. Things that have improved for me are some of those hidden symptoms so to look at me you might think why is he taking that stuff but for me i just feel better. I don't know why or how but just glad i tried it. It could all come crashing down tomorrow but for now it is so much better than before.I still get pretty depressed sometimes, much much less.Since i have been on this site i never been one to value hope but i can see now how important it is. I need to walk again.
Had ms for over 19 years now.
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Postby SarahLonglands » Mon Dec 20, 2010 8:24 am

Yes, one lady we know sees that I am getting better then wonders why I say I can't come round for coffee in the middle of the day because I am busy painting. Her response was that she understands because I must want to get as much done before the disease hits me once more and I might not ever be able to paint again! She also thinks it "a nice hobby for me," not thinking that it is my profession.

Robbie, I am sure you will walk again because you are so determined.

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 Lyon » Mon Dec 20, 2010 9:31 am

.
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Postby agatha » Mon Dec 20, 2010 11:42 am

I agree Robbie - though I've found it's usually health professionals of various kinds who are sceptical. This unfortunates includes many of my friends since I am a health professional myself! Like you many of my improvements are invisible - eg. I have stopped feeling cold and shivery after 20 years of being cold.
My MS nurse visited last week and after telling her how much better i felt since taking the abx she clearly thought it was nonsense. She is a very kind lady and I could see her hesitating over what to write in her notes and in the end i suggested she should just write what she was thinking ie 'the patient is bonkers'. Ha ha! She took it quite well.

Sarah - that must make you really mad!
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Postby robbie » Fri Dec 24, 2010 10:05 am

Alot to be grateful for.
Merry Christmas everyone at TIM's
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Postby robbie » Wed Mar 30, 2011 9:12 am

Finished with antiibiotics now, another mri showed more progression from the first one i got when i started 8 months ago. I am going to get tested for ccsvi and see where that road goes.
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Postby SarahLonglands » Thu Mar 31, 2011 8:41 am

From nov 19, 2010

Went to my neurologist today and she did her tests and at the end of our 15 minute visit she said "you seem to be in a holding pattern" I was really glad to hear her say that.


From dec 07, 2010

Got the results of my last MRI it showed two new lesions and two that had disappeared. This MRI is being compared to one I had in August, 2008 . I started the full antibiotic treatment in August, 2010 so it is hard to compare these two MRI's.I am going to continue with antibiotics and another MRI down the road which will be a little more telling.


I haven't had an mri since two years after starting treatment. Since I am obviously not getting worse, I see no point, but who knows, maybe by brain looks like a Swiss cheese by now!

Robbie, mri's apart, are you still getting better, strengthwise, walking wise and so on? I hope you are still exercising, even if you have given up abx. There are several people who keep their options open and use abx whilst having ccsvi treatment: the two aren't incompatible.

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 robbie » Thu Mar 31, 2011 10:09 am

Hi Sarah i had an MRI done at the beginning of the abx but it was being compared to one in 2008 and it showed some progression but that might have happened prior to starting abx so we did another to see if the abx had stopped any progression while on it but it had not so he stopped it,not sure why i felt so strong sometimes, must have been one hell of a placebo effect. Over the last couple months i knew things were going down hill but i kept up with the abx.Will keep up with the exercise as much as i can. I know the test for CCSV is being done at a hospital close by now so i thought i would grasp at that straw now, Glad i tried the abx it's the only real way to find if something works.
Had ms for over 19 years now.
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Postby robbie » Tue Apr 19, 2011 8:13 am

Can you substitute doxycycline with minocycline? I think that my neurologist is more likely to give me some minocycline. I am still taking some doxy that i had from before. Progression or no progression i feel better taking them.
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Postby SarahLonglands » Tue Apr 19, 2011 9:16 am

Robbie, yes, minocycline might even be slightly better but David prefers to use doxy because it has fewer side effects, so its better when you are not seeing someone all the time. You know, maybe if the new lesion is only small, it might vanish like the ones I had just before I started treatment. You were doing so well, this could well be the case.

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 robbie » Mon May 02, 2011 9:21 am

Got some minocycline from my family doctor and hope my neuro will continue it when i see her in a couple weeks.
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