Nov. 17th 2005 - A New Life for 2006
To start my blog, I thought I would add three pictures, so that people can see I am a real person and not just a figment of someone's imagination. The first two little black and white ones are the only ones that remain of a horrible period of my life, dating from 1999 until late 2003. I destroyed all the others. By the second one, taken a few months before my diagnosis, I was looking particularly ill. This was when my memory was starting to go but I was convinced I was getting better. The colour one, me and two recently finished watercolours was taken today.
Last week, I finished the most recent booster dose booster dose of my now intermittent schedule of antibiotics which I began in August 2003 to treat my very aggressive SPMS.
This is the first booster dose where I have just taken tinidazole in place of metronidazole. Last time I swapped over part way through and the change in mid stream made the comparison between the two that much sharper. This time I found it still to be a preferable drug to take and will stick with it, but I lost the euphoria I experienced last time which was obviously due to the immediate comparison of the two drugs. I certainly felt less tired and less tearful, so that is enough, sine it only has to be endured for five days. Apart from this, I had no difference between taking any of the abx and not taking them. I haven't for over a year. Now, in the same way that my disease was progressive, with the odd relapse thrown in for good measure, the reverse is now the norm. My improvements are progressive, with the occasional leap upwards. I certainly have more stamina now than a year ago and can therefore face painting on an easel, rather than just sticking with watercolours which necessarily have to be done on the flat. However, I have made a big move in deciding to stop oil painting and move over to acrylic painting. Still on canvas and using the very best quality "Golden" acrylics from the U.S, but it will take a bit of getting used to because the paints dry that much more quickly. I made this decision because of my lavish use of organic solvents over the years. I think there is little doubt that they made my disease worse. I was reluctant to admit this but the evidence, I think, is overwhelming. Now I will only have to come into contact with them briefly, whilst varnishing and I can easily use a mask whilst doing that. So, a new life for 2006! I am actually getting quite excited about it: although the acrylics I have ordered are as near as possible to oil paints in the tube, they will require a very different way of working because they dry so much more quickly.
Addendum: I thought that just maybe "my" neurologist was seeing the light of day since he voluntarily came and briefly sat next to David at lunch in the Medical Institute on Monday, before vanishing for a physician's meeting. This was a distinct change from him sloping round the hospital corridors trying to avoid David's glance. But yesterday I learned that he was actually point blank refusing to refer people to David because the treatment was completely unproven and if they were progressive they should just accept the fact, go and learn what they could about the disease and make an appointment to see the MS nurse. Where have I heard that before? My indifference is rapidly growing into positive hate. How dare he still say that? These are real, live people sitting on the opposite side of his desk, just like me 28 months ago. I feel that if I came across him in one of the corridors, I would punch him or throw him down the stairs if some were nearby.
Nov. 18th 2005 - A Few Memories of the Early Days
I have become increasingly aware over the last little while that there is much that I don't remember about the early days of my treatment. In fact there is much I don't really remember about the weeks leading up to my scan and resultant diagnosis. The week or ten days following the diagnosis, before starting on the treatment are a blur.
I have claimed that when I started treatment I had no real troubles until the third pulse of metronidazole, when I experienced a horrendous few days of reflex sympathetic dystrophy. By and large, compared to many people this is true, but in talking with David, I have put together a few things which had escaped my memory. When I say escaped, to be honest, some I just chose to forget until reminded.
To begin with, for a few days after starting treatment, I did experience what is in fact a true Herxheimer reaction, namely a slight fever, chills, headache, and a certain amount of muscle pain. It wasn't irksome and I wasn't quite with it at the time, but I do now remember it when it is pointed out.
Another thing was that doxycycline definitely turned my normally perfectly regular digestive system on its head for a short time. I got through loo paper by the tonne, even with extra acidophilus. Maybe this was because I had only had occasion to take antibiotics twice before, for short periods: once when I was seven, for scarlet fever and once when about thirty for an infected mosquito bite which made my leg swell up so much I couldn't get my boot off. Anyway, the G.I thing soon went completely back to normal. (So did my leg! [But not the boot])
Then I started on metronidazole. I commonly say that I didn't feel anything until the third pulse, when I experienced an excruciating reflex sympathetic dystrophy for about a week. It is true it only lasted this long and always lessened at night, thank goodness, but ever since starting the first pulse, I felt a certain sharp pain when moving my right arm suddenly backwards with any degree of force. Not something one tends to do all the time, so it always took me by surprise. I remember we had been to a Diwali party at the house of one of David's technical staff. I pushed the car door closed whilst I was walking slightly forwards. Ouch! I had never felt pain quite like it, but it was gone in a second. I was perfectly composed when walking up the driveway to the house. I did not at that time have all the strength back in that arm: I was tentatively starting to paint, but not doing anything I was happy with, and any really difficult food David would have to cut up for me because I couldn't apply enough force. However I can truthfully say that I didn't feel any improvement with the first pulse: that came more gradually sometime after.
Now, I never took amoxicillin which is at various times favoured by Chuck Stratton for its use in opening up the EBs. It has now been realised that n-acetyl cysteine does the same thing, without being an antibiotic. I started taking this only a couple of months ago and get the same reactions that so many other people are reporting, but much more lightly. I presume from this that I still have some EBs lurking because it is not a reaction universal to everyone who takes the stuff. After starting the NAC I also took amoxicillin for a couple of weeks but felt no difference, so I opted to stick just with the NAC. You must remember with all this that I am just one person and everyone will react differently. There someone I know personally with chronic fatigue and recognisably high titres for CPn who just got better without turning a hair. I expect Jim wishes he was that person.
To be continued........................