Either Monday or yesterday was exactly two years since starting the antibiotic treatment. These last two years have been very strange ones, to say the least. Not being someone generally inclined to post on forums or either look at them come to that, six months into the treatment, with an amazingly improved MRI scan (for someone with SPMS) under my belt, I thought that I ought to do something to spread the word about something which had given me such improvements against all odds, because having looked into things in the previous few months, I knew what difficulties the originators of the research in this field, namely Ram Sriram and Charles Stratton of Vanderbilt University, Tennessee, were having being taken seriously. Well, I chose the wrong site to start with, being a novice in such matters, but eventually found ThisisMS in June of last year.
Now, I know many people who are taking antibiotic treatment, based on the theory that MS actually has an infective cause and that CPn is the culprit. Not by any means all of these post anywhere, which is their choice. I also know a few who started out but then got disheartened because it isn't the quick fix they had hoped, and so have stopped and gone on to something else. Again, this is their choice. They always have the choice to revert to antibiotics at some point.
What I would like to reiterate here, though, is the fact that antibiotic treatment is not a quick fix because CPn is so difficult to completely expunge from your system, and this very expunging can lead to some very uncomfortable episodes en route. For instance, I can now say that I have had no relapse or progression of the disease since starting treatment, whereas before this, once I had become truly SPMS, I was progressing at an alarming rate. This does not happen to everyone because I know of people who are a fair bit older than me yet are not at the moment so badly affected as I was. This partly depends, amongst other things, on where in the CNS the disease strikes and how recently one has had a reinfection with the organism.
David is very shortly going to be adding a piece to his web-pages, explaining the difference between a true relapse and a pseudo relapse, discussed with people who should know, which many people have probably experienced on the CPn regime, so I will leave it to him, then cut and paste it when he has done it. It occurred to me thinking back, that if I had not been married to David, who could go through such things as and when they happened, when I experienced the awful pain in my shoulders and down my right arm, at just short of six months, which made my right arm temporarily useless again for maybe a couple of weeks, I might have put this down to a relapse. It can't have been because apart from anything else, no disease activity showed up on the two subsequent scans.
So now I can get on with doing new work for an exhibition in France in something over a year's time, violin dealing and running my small company without the fear that I am not going to be able to carry on. I can even race around the park on my bike: I can't manage running yet!
As a change from a picture, here is a poem written by David and published in 1998
A constant dream of those
who can no longer walk
A constant dream
of those who can no longer walk
is the running over level sands.
In the close and confined air
the dream recurs—
the running over level sands,
no hunger for the air
which comes like nature to the breath,
no flight upon a freedom
for the spirit freely is,
no sight taken for a course
for all that being takes unto itself
is a running over level sands.
From 'The Present Perennial' ~ Sept. 1998 ~ © David Wheldon