There they stood, ranged
along the hillsides, met
To view the last of me, a living frame
For one more picture! In a sheet of flame
I saw them and I knew them all. And yet
Dauntless the slug-horn to my lips I set,
And blew. 'Childe Roland to the Dark Tower came.'
(Robert Browning, 1855)
Looking back, I must have had
multiple sclerosis for about 20 years before treatment, since
I developed the first symptoms just after leaving art college,
in the early eighties. -For the
majority of this time, it was in the relapsing remitting form,
but the relapses were so minor, often a couple of years apart
and so soon gone, leaving nothing in the way of accrued deficits,
that it never really occurred to me, or rather I never really
wanted it to occur to me. As soon as I got over each attack I
would forget about it and get on with life. The only treatments
available then would have been doses of IV steroids and I was
totally against steroids in any case.
Things suddenly began to go
wrong early in 1999, after a bad attack of influenza, which resulted
in a bad cough and the start of adult onset asthma. By the end
of the year I was finding myself unable to walk more than a couple
of miles without developing severe right foot drop, or four miles
at the most. I remember asking my GP about this but she said,
"Well, do you need to walk more than that?" I suppose
most people don't, but I was used to waking and cycling very
long distances. Then, in the summer of 2001, what was thought
at the time to be viral meningitis, left me hardly able to walk
across the room, with legs numb from the knees downward and severe
vertigo. I would look down at my feet but not be able to mke
them move. This somewhat cleared up after a number of weeks,
but by no means completely. Just walking to the railway station,
about a mile and a half, was the most I could manage, but that
with difficulty. Then a major gynaecological operation a year
later gave me another relapse, less severe than before, but this
time not getting any better. I could still cycle, just about,
but had to buy a bike with a dropped crossbar, to allow me to
get on it. Once on, I had to keep going because I had difficulty
starting again, so I daren't go on a road.
I was convinced this was the
result of the operation and was imagining all sorts of trapped
pelvic nerves. I was sent to see an orthopaedic surgeon, who
diagnosed 'congenital spinal stenosis', which suited me because,
according to him, this gave me a 30% chance of getting totally
better. Never having been seriously ill before and being generally
regarded as fitter and healthier than most of my friends, this
suited me fine, because as an optimist I was bound to be one
of those 30%!
By early 2003, though, I was
struggling to keep the use of my right arm, trying to get a big
commission finished for the Queen Mary 2 cruise liner. Power
would drain away then I would manage to get it back for a few
days. My husband, who could see that I was determined to get
it done, made me a wooden support to fit on the front of my 'industrial
size' easel, which I could lean on to support my arm. I finished
the six paintings but my arm gave out completely: I needed help
to finish the varnishing.
I was living in a kind of mental
fog, not even realising how bad I was getting, until my first
MRI scan and resultant diagnosis by a neurologist brought it
home to me at the start of August 2003: rapidly advancing secondary
progressive multiple sclerosis. "There is no treatment and
no cure, so go home and find out what you can about the disease,
see the MS nurse and then I will make an appointment to see you
again". This is not what I wanted to hear. In the few days
after seeing the neurologist, light began to dawn, thinking that
I would never be able to paint again. What could I do? My MS
had become so aggressive I would soon have need of a wheelchair,
stair lifts, hoists and all the rest. No more painting. Over
the next few days I was completely numb, not thinking clearly
at all, but making some vague attempts at finding out what I
could, because no matter how 'foggy' I was, I was determined
not just to sit back and accept the diagnosis. Well, I wasn't
thinking clearly beforehand, being convinced, despite evidence
to the contrary that I was getting better and telling everyone
so. Even as I stumbled through to the MRI suite, clinging on
to the walls, I still believed this. I didn't know really where
to start to look, though.
My husband, David Wheldon,
is a consultant microbiologist at Bedford General Hospital who
had some experience of people with MS whilst a student and later
while training in neuropathology at the Radcliffe Infirmary,
Oxford. His experience then made him think that MS had an infective
cause. This was the idea of many neurologists back in the late
nineteenth century, but no single pathogen could ever be discovered,
so the idea was eventually discounted. From time to time various
pathogens, both viral and bacteriological, have been thought
to be linked with MS but as yet no evidence had been put forward,
which was entirely convincing.
This positive diagnosis jolted
him into action: he spent a few days doing some serious internet
searches and before long discovered the work which was going
on at Vanderbilt University in Nashville, Tennessee. This work
involves the finding that the ubiquitous respiratory pathogen
Chlamydia pneumoniae is a causal factor in at least some variants
of the multiple sclerosis. This bacterium has only recently been
discovered to be a pathogen at all, in the late 1980's. It has
also been linked to relapsing-remitting forms of disease elsewhere
in the body. These include asthma, reactive arthritis and arterial
disease. It is a strange, amorphous bacterium, small and for
much of its life cycle cell wall deficient and living within
the host cells. For this reason both serum and CNS readings are
extremely difficult.
More information about the
pathogen and its role in MS can be found here:
http://www.davidwheldon.co.uk/ms-treatment.html
This includes a
pdf file, which goes into things in more detail, for the more
scientifically minded and a "Question and Answers"
section near the bottom of the first page.
Within ten days I had started
on the following antibiotic treatment:
doxycycline, 200mg once a day,
but would have to be avoided during pregnancy,
roxithromycin, 150mg twice a day, which could be substituted
by azithromycin, 250mg three times a week (Mon Wed Fri).
Rifampicin, 300mg twice a day was swapped with the doxycycline
after six months, but it has no immunomodulatory properties,
so my walking deteriorated for a while.
Also, five day bouts every
three weeks or so of:
metronidizole, 400mg three times a day.
Treatment time was to be non
stop for a year then back to doxycycline and roxithromycin taking
two week courses every two or three months, with five days of
metronidizole during the second week.
After a bit of experimentation,
I eventually opted for this daily supplement regime:
B-12 5000mcg sublingually every day
Best quality Omega 3 fish oil 4000mg
Vitamin D 4000mcg
Vitamin B complex with C 1g a day
Vitamin E 800mcg
selenium 100mcg
co-enzyme Q10 200-400mg a day, mainly for further anti-oxidant
benefits
magnesium 300mg
calcium 500mg
acidophilus or lactobacillus sporogenes, several capsules as
required.
calcium, magnesium and acidophilus should be taken at least 2-3
hours after doxycycline
I have also found the following to be helpful with any residual
problems with fatigue: Combined Acetyl L-Carnitine 1000mg and
Alpha Lipoic acid 300mg per day, in two separate doses.
When I started this treatment,
in August 2003, I could barely hold a paintbrush, never mind
do anything with it. Within a few weeks though, I was showing
definite signs of improvement. My normal clear and precise speech
pattern had returned and I didn't immediately fall asleep in
the armchair in the evening, instead of reading. I felt clearer
in the mind than for a long time and was soon tackling the "Winning
Move" chess problems in The Times again, often solving them
quicker than my husband. It was as though a kind of fog had lifted
from me and I soon realised with great clarity where I had been
heading. I couldn't believe how I had been behaving and don't
know quite how David managed to put up with it, especially since
he had thought even before we were married, that I had MS.
After a few weeks I picked
up the paintbrush again. My hand was very unsure at first and
I would often despair at being able to do what I could before,
but I gradually regained both assurance and strength. I did two
watercolours at first which I was not particularly happy with:
they seemed positively amateurish and clumsy to my rather perfectionist
eye. I started something else; two full sheet paintings, which
were immeasurably, better, so I started the first two again.
These were so much better that I threw the first ones away with
great relief. Now there is no stopping me, although there were
a few weeks after the second pulse of metronidizole where I was
suffering extreme pain in my right arm. This pain moved around,
anywhere from shoulder to wrist, but always eased off at night.
For those weeks I attempted painting with my left hand, but fine
detail was out because I am definitely not ambidextrous. I can
do a certain amount with my left hand, always have done, but
fine detail, no.
2 years passed, along with
two follow up MRI scans, and soon to be a fourth before the old
machine is mothballed. Both of these showed remarkable improvements
unheard of for someone with established progressive disease.
Some lesions on the outside edge have completely vanished and
the others are greatly diminished, apart from one relatively
small one in the periventricular region which is probably the
very oldest one. There is no new activity at all. Looking back
at the images of the first scan, the lesions were so numerous
and large that there seemed to be likelihood that they would
just all join up, leaving nothing in between. If I am stuck with
the old ones, as scar tissue, there is plenty of room around
it. It should be said that, according to conventional medical
wisdom, once the secondary progressive phase is established,
recovery is rare.
After a year, because I was
doing so well, I switched to intermittent therapy, two week courses
every two to three months, as detailed above. I am still carrying
this on, after another year and am still showing steady improvements.
You will probably already have read "Ignoring the Evidence", however,
far and away the best place to look for updates on this progress
is the excellent site ThisisMS where I post both in the Antibiotics
forum and the Regimens forum as "Anecdote". In fact
the Regimens forum a majority of people are using either the
regimen of my husband, David Wheldon or the regimen of the people
at Vanderbilt University: Charles Stratton, the microbiologist
and Ram Sriram, one of the neurologists.
I wasn't going to post updates
here, just on ThisisMS, but I have changed my mind, so look below
the dark tower.
Sarah Longlands. August 2005
I had my latest MRI scan at
the end of August 2005, after a gap of one year. The radiologist
phoned two days later to say that having reviewed all the four
sequential scans together, there have been no new lesions at
all in those two years and some resolution of the existing ones
from the previous scan. According to him, this lack of new lesions
is remarkable in someone with progressive disease and he has
never seen it before.
After I posted this on ThisisMS
I got this reply from the site administrator:
Sarah-- outstanding news!
So happy to hear things are going OK, both in how you feel as
well as on the MRIs. That is remarkable.
I have to be the damper
here-- Sarah is one person-- so in order to get a trend, MANY
of you need to go and get better! How you do it is up to you
and your doctor, of course, but certainly Sarah and Dr. Wheldon's
willingness to share should help your GP/neuro decide if Antibiotics
are a worthwhile experiment in your case. Compiling a list of
people who have taken the therapy AND have objective before/after
MRIs would be a critical step in building a strong *clinical*
case for antibiotics and MS.
Ok, I'm done with my disclaimer.
So happy for you Sarah!
-a
If you read that site you will
find many little titbits about cork catching, wine bottle opening,
walking up hills by myself and so on, so I won't repeat everything
here. What I would like to say, though, is that anyone wishing
to follow a similar path will find many obstacles. You have to
be determined. Participating in or at least following both ThisisMS and
CPNhelp will be
a great aid.
More to follow, and here it
is, as at 18th May 2006, taken from CPNhelp:
"A few days ago it was
three years since I made an appointment to see “my”
neurologist which three months later lead to my diagnosis of
very aggressive secondary progressive MSi, after years of being
totally able to ignore that there was anything wrong with me.
It was still early May, 2003, and I had been finding difficulties
on and off for several months with my right arm, but this would
wax and wane somewhat and I was still able to carry on working
on my commission for the Queen Mary 2 Cruise liner, although
I was never totally happy with these works. I had to send regular
updates to the art consultants in charge of the commission and
really couldn’t understand why they objected to the dark,
stormy skies I put in two of the pieces:
I reluctantly changed them
into fresh green trees, but the clouds were really more descriptive
of my state of mind at the time, not that I would admit it, but
I really should have seen that such clouds were not going to
go down well in two of the six penthouse suites. I had a really
bad relapse a year and a half previously which had left me just
about able to stand but not much else. I had improved somewhat
from that and was unwilling to believe that my illness had become
progressive, which it certainly had, because after that there
were no more relapses, just deterioration.
The neurologist obviously saw
what I was unwilling to and put me down for an MRI but didn’t
rush it through, giving David coded indications of what was in
store for me and that he “should make arrangements……”.
Over the next two and a half months I became unbelievably worse,
but I didn’t see it. By the time of my MRI and diagnosis
I still thought I was getting better. I couldn’t use my
arm, so couldn’t paint, I could hardly walk, certainly not
unaided, but I couldn’t see that."
Let’s fast forward to
two years ago: I had been on doxycyclinei, roxithromycini and
flagyli pulses for six months and I was much better than when
I had started. Although I had definite ups and downs during this
time, the trend was for improvement. Because the MS and as I
now know, the infection resulting in MS had been so aggressive
when David started me on the treatment, I showed more rapid improvement
more quickly than many people. A certain fogginess of thought
was one of the first things to right itself, together with my
slightly slurred speech, which I didn’t even realise I had
until everyone started commenting on how much better I sounded.
Then I started to be able to tentatively use my right arm again,
although there was not much strength or dexterity there for a
few months. This was a gradually improving process, though, again
with a few small setbacks, most notably when I developed reflex
sympathetic dystrophy and the associated excruciating thalamic
pain, like having part of your arm in a bone crusher for a few
minutes, then stopping, only to restart somewhere else on the
right arm or shoulders, during my fifth or sixth flagyl pulse,
which lasted no more than ten days but left my right hand somewhat
weakened again for a couple of months.
Fast forward again to May 2006
and I am better than I could have imagined when I started treatment.
This does not mean that I am completely as recovered as I would
like. My arms are fine except after a long day painting my right
arm can be a bit tired when it comes to, say, carving up a fillet
steak neatly. (Someone here is going to say “Well, you shouldn’t
be eating red meat anyway!” Well, my answer is that I don’t
very often.) I was going to say that I have trouble with my right
arm raising it slowly sideways until it is completely above my
head, then keeping it there as I bend over to the left whilst
moving my left arm down my leg to beyond my knee, legs slightly
apart, but I hadn’t done it for a week and can do it much
better now than a couple of months ago. This is one thing where
practice can make perfect. My legs are not as good as my arms,
I don’t suppose they ever will be because there was more
longer term damage to make right and new pathways always will
take longer to travel along. More of that in my next blog, but
what I am most pleased about at the moment is the fact that I
am finding my thought processes are so much better. I am finding
inspiration is coming for my painting in a way that it hasn’t
completely since my mid twenties. I know what I want to do, how
to do it, what size to best do it and more. I worked out how
to do acrylic painting relatively easily, how to mix that notoriously
difficult colour green, so that it looks alive and vibrant, and
I am happy! A few of the paintings I did as watercolours when
I first started to paint again I am going to redo as 4ft 6ins
tall acrylics, because they really should have been this big
to start with, except I couldn’t manage anything other than
a comparatively small watercolour, in order to give the effect
of caves towering above your head, as in this picture:
And below is a picture which
I started in oils beforeI got very disabled, then dropped and
damaged. When the treatment really strted to work I repaied it
invisibly then in 2007 I finished painting it in oils.
Its called "Isola Pioppi"
but it maybe it should be called "Avenue of Sight."
It measures 26 x 38 inches
Edited 14th June 2007
Now we are in early April,
2008. I last took antibiotics in June, 2007 and I still gradually
continue to improve. Not as much as before, but improvements
nonetheless. I was at first a bit worried about stopping but
I knew that if I felt anything bad coming back I could restart
straight away. I kept a little supply for this purpose but have
never had to use them.
What I find most amazing about
all this is the fact that I have improved cognitively so much.
This is something that has happened gradually over the last nearly
five years. I did report quite early on about getting my normal
speaking voice back and I not only stopped laughing inappropriately
but was very embarrassed when I realised how I had been, but
this is more than that.
I will expand more on this
later, but for now, I have restarted painting in oils again.
No matter what I have said about preferring acrylics, I was not
telling the truth. In fact I grew to dislike them so much after
a year of getting used to them, that I finished very little last
year compared to the previous year. My biggest dislike was the
colour green. Sap green, especially, looked so artificial. It
is a colour which I use a lot. Now I can use sap green again
and have decided to glaze over some of the acrylic paintings
to make them a better colour. If I find that the difference shows
up enough on a PC screen, I will show before and after shots
of them as I work my way through. First to get some new stuff
on the way, though...............
Sarah Longlands, April 3rd,
2008
And now it is autumn, 2009
and I am happily painting in oils once more. I truly hated using
acrylics and now feel much more at home as can be evidenced my
my studio becoming its former messy self again. No time to be
tidy, you see.
Click on this picture and you
will see one of my most recent paintings, part of "Ten years
of Lanterns."
Sarah Longlands, November 10th,
2009
.