Anecdote's continuing itinerary through light and shadow

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

Over a year since my last update......................

Postby SarahLonglands » Fri Aug 28, 2009 7:37 am

..........................Six years ago I started taking doxycycline, closely followed by roxithromycin. I have not had an adverse MS event since then and in addition I have had many improvements, the main one being for me, the return in function of my right arm and hand, meaning that I was able to resume my career as an artist. Two years ago I finally finished treatment and after that time I have still continued subtle improvements, however, I tend to still classify my EDSS rating as 2, because my motor skills can vary so much throughout the day. I have said for the last two years that my main enduring problem was not being able to lift my right foot very far, making it impossible to get easily on and off my bicycle.

However, I had another problem, not nearly as bad as some people with MS get, but annoying nonetheless. I would lose count of how many times I would have to go to the loo every day and would wake up four or five times in the night. Other people like Kim, lost this sense of urgency quite quickly, but with me it remained. I must know the exact placing of every WC in town and which restaurant has the best and most facilities. I have always disliked the idea of catheterisation because it can lead to interminable UTIs, which is one thing I have never suffered from.

Thinking back, this is one of my very first MS symptoms from back when I was in my early twenties, so I suppose its not surprising that it has taken so long after starting treatment to right itself, but right itself it has done. I am now sleeping better than I have done for as long as I can remember, waking up at most once during the night. During the day old habits die hard: I still might feel ever couple of hours that I must use the loo, but if I choose not to, I can wait for at least another hour, sometimes waiting four hours in total.

Never having suffered from retention problems I at first thought it might be retention rather than improvement, so I have been testing myself for the past four weeks. Not only can I hold going to the loo when I feel the need, I can also stop and start at will, so no problems there.

Another improvement which was already in train is being able to hold both hands pointing upwards for at least quarter of an hour without my right hand gradually folding towards my wrist. This was getting better before but never for so long. Who knows, perhaps next I'll even be able to get on and off my bike without the danger of collapsing, bike and all, to the ground. I mustn't be too optimistic, though since such nerve repairs aren't supposed to happen so long after the 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.
SarahLonglands
Family Elder
 
Posts: 2107
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Advertisement

Postby notasperfectasyou » Fri Aug 28, 2009 8:07 am

Sarah,
It's always an inpiration to read of your improvements. I've come to think that there is an importance to keeping up new posts. :) It's important for us to keep sharing and re-sharing our experiences with ABX.

We still make sure we know where the restroom is when we try a new restaurant, but it's, I suppose, more out of habit now than actual need.
Ken
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Postby agatha » Fri Aug 28, 2009 8:54 am

This is superb stuff Sarah. Out of interest do you describe yourself as still having MS or do you say 'When I used to have MS...'?
Agatha
User avatar
agatha
Family Member
 
Posts: 64
Joined: Sat Jul 04, 2009 3:00 pm

Postby robbie » Fri Aug 28, 2009 9:55 am

perhaps next I'll even be able to get on and off my bike without the danger of collapsing,

Sarah i sure hope to see some improvements ANYTHINHG! When i was a 2 i was getting on and off a machine at work 20 times or more a day with no problems. It's funny how everyones ms is so different.
Had ms for over 19 years now.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Postby LR1234 » Fri Aug 28, 2009 10:13 am

Great to hear Sarah! Thanks for the update. Quick question though...why am I taking azithromycin when you took roxithromycin?!!!

Robbie, I really hope for you to have improvements. I would love to see something work for you as I know you have had a tough time with this disease.
LR1234
Family Elder
 
Posts: 1502
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby SarahLonglands » Fri Aug 28, 2009 4:20 pm

Ken, I agree that it is important to keep up with new posts, but I just didn't have much new to say for a while. I have noticed that if I don't post at all, though, I soon get people asking me what's wrong: am I getting worse? So I do keep posting replies to other people!

Agatha, I would prefer to say "When I used to have MS," but the trouble is, insurance companies, for example, mark you for life. Nobody can stop me thinking that, though.

Robbie, when I was 21, I thought I could do anything. When I was 31 I cycled by myself through the south of France and down into Italy.

When I was 41 I could hardly walk.

Things changed with abx though and I really, really hope they do for you aswell.

L, I took roxithromycin because it does have marginally more brain penetration, but it isn't on the lists in the UK. If a doctor is willing, it can be ordered from France, but most aren't that adventurous and neither are the pharmacies.

Sarah :D
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.
SarahLonglands
Family Elder
 
Posts: 2107
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby robbie » Sat Aug 29, 2009 1:41 pm

Robbie, I really hope for you to have improvements. I would love to see something work for you as I know you have had a tough time with this disease.

Things changed with abx though and I really, really hope they do for you aswell.

Thanks LR and Sarah i hope so, there are so many stories here about people getting better, i hope i can be one of them.
Had ms for over 19 years now.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Previous

Return to Antibiotics

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service