Sarah's Unillustrated Blog

Submitted by Sarah on Fri, 2005-12-16 09:30

Please read this very carefully.

I mentioned in my first blog that there was much I didn't remember about the early days of my treatment.  I have never been a terribly good record keeper, but I did start out keeping a journal.  For a few days I even added to this daily, but soon I could go for a couple of weeks without adding anything.  This period rapidly became longer and then eventually I ditched it all, probably in a fit of pique.  I had no intention then of taking part in anything like ThisisMS or this site.  If I had I might have been more circumspect.  In one way it is good that I even now only remember something when someone experiences a similar reaction themselves, because if I had a list of absolutely everything and had put it all down, then I might have risked putting ideas into someone's head.  It is better if someone new to the treatment suddenly comments about various things  -  I'm going carefully here lest I say something that hasn't been mentioned yet!  Let's take one of the most recent comments on the board about a desire for hot food: if someone has not experienced that at all, they might feel that they are not succeeding!  Then there are Karen's blue toes, or my early experience of putting my feet down to the ground when I got out of bed when the weather first turned wintry and feeling the cold floorboards, one toe turning blue and the toe nail actually coming off.  It has grown back perfectly now, by the way!
A very important thing that I want to mention here, though, is something that I only realised a few days ago when talking to someone who started antibiotics this year, back in Early August, nearly exactly on the same date as me two years previously.  This person is just about to start his third pulse of tinidazole, timed to finish on December 25th and yet I have been saying that my only really severe reaction was during my third pulse.  It can't have been because I didn't experience it until February, so it must have been at least the fifth.  I think it is important to say this because many people are almost looking forward to feeling that something is happening yet will never experience the agonies that other people do and so might just think that they are failing somehow with the treatment, like with the ubiquitous Marshall Protocol, where if you don't go through purgatory and back several times over, you are made to feel like you failing.  Its not like that, if you don't have a build up of CPn in your limbs, you won't feel it there.  I felt nothing in the first pulse: I had already gone through the true herxheimer "almost going down with 'flu"  feeling when starting on the doxycline. It was shortly after this that I nearly gave up the treatment because we both thought it wasn't working.  Remember I was David's first chronic CPn patient. I started lurching all over the place, and it was only the fact that I felt clearer in the head that made me determined to carry on. Subsequent pulses I felt slight twinges in my right arm, but nothing major until the what I now realise was he fifth pulse, which gave me two weeks of reflex sympathetic dystrophy in my right arm, which had been nearly paralysed, so it isn't surprising.  This was the most excruciating pain, but it did only lasted two weeks.   I had lived all my life until then without any arthritic pains or such like and many people will never experience anything like this.  I guess I wouldn't have if I hadn't lost the use of my arm.  I might have looked like I was in great pain sometimes when walking, but I never was apart from then.  I probably still do sometimes when I am tired or stressed.  I can get quite irritated when elderly men ask me if I am alright when I thought I looked perfectly OK or a bus driver asks if I have got a card. Best to avoid small supermarkets where they have changed all the shelves around if you are hungry and taxis are much preferable to buses........Sarah

Please read this very carefully!   I do spend a lot of time worrying that people are just going to give up because they don't think they are going to gain any improvements.  It is a long, hard journey after all, in different ways for everyone.....Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I'd like to echo your comments here Sarah because I am going through the early, quite rocky, months of David Wheldons protocol and to be honest I sometimes wonder if I'm on the right track as it can be HARD GOING .......... and I haven't even started on the tini yet! I should point out here that I don't have MS, but ME/CFS caused by lyme/borreliosis and also Cpn, so my symptoms won't be the same as anyone elses but then we are all so different, even within the same diagnosis, these types of illnesses are so very individual to our own make-up my point is that no one persons experience can ever predict what will happen to someone else on the same treatment, or even with the same 'illness' JUST BECAUSE IT HAPPENS TO SOMEONE ELSE DOESNT MEAN IT WILL HAPPEN TO YOU, and that means either good or bad reactions. Its really helpful to share experiences and comforting to know that others have been through the same but it's important to remember that everyone will respond in their own way so don't give up, anyone, because we will all get better in our own way and at the rate our bodies can cope with. Now all I have to do is convince myself................hah! from a very impatient Elinor
Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.