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 starting treatment,
since I developed the first symptoms just after leaving The Slade
School of Art, in the early eighties. The first symptom was a
numbness in my left thigh and for some reason I went to see my
GP, a young man, recently qualified, who was anxious to get everything
right. He drew a plan of my thigh, marking the numb places and
I now guess so that if I came back with further symptoms, they
could be checked against this. The numbness faded away as he
said it probably would and for a while I forgot about things.
A couple of years later I was working late on a very big painting.
I was just about to go home when I passed out. I remember feeling
a bit jerky, as though I was having a slight epileptic fit. It
happened once more in a supermarket so I arranged to see a neurologist
at Victoria Hospital, forgetting about the numb thigh episode.
This was before the advent
of MRIs in this country, so I was wired up for an electroencephalogram
and then went in to see the neurologist: an arrogant, rather
rude brahmin, I took against him straight away. Several weeks
later I was given another appointment to see the results, but
since I was feeling so well, I never went back. I didn't want
to be diagnosed as an epileptic and I didn't know then that fits
could sometimes be involved with multiple sclerosis.
A couple of years later I found
that my right arm had become weak and useless. I had felt it
coming on for a few days then one morning I woke up and it was
so weak that I could hardly do anything, not even pick up a mug
of coffee. So, new town, newGP, back to the new surgery: This
time the older locum GP said it was probably a trapped nerve
which would soon right itself. Well, of course it did, but when
this happened a second time I decided to go to an osteopath,
when it didn't get better within a couple of weeks. After three
weeks of treatment I was bluntly told that I should see my GP
before any further treatment, so back to square one. I didn't
take his advice: I saw one the physiotherapists for Blackpool
football club instead. I think realizing what the problem was
he said that if it wasn't better after Christmas, come back,
but it probably would be better. Of course, it was.
Did it occur to me that I might
have multiple sclerosis? Jacqueline du Pré had recently
died but the only person who I really knew at the time to have
the disease was totally incapacitated, wheras I was one of the
healthiest people I knew, able to walk or cycle for miles, with
the resting pulse of an athlete. Anyway, it was just as well
that I didn't put two and two together because there was no treatment
available apart from steroids as needed and I had no desire to
In 1993 I met David and we married on New Year's Eve. There was
no trouble for about four years but then relapses started, and
even closer together. No paralysis in the right arm this time
but such things as a slight optic neuritis, where the colour
was much paler in my left eye, or I would get flashlights when
I closed my eyes. Once I went through a period of finding difficulty
in speaking. David was working up in Bangor at the time, so I
managed to disguise it by letting him do most of the talking
when we phoned and it was gone by the time he came home. Another
time I found myself speaking as though I was drunk though, and
this must have been when he started getting worried, because
he did now about my previous arm trouble.
Things suddenly began to go wrong early in 1999, after a bad
attack of something like influenza, which resulted in a continuing
bad cough and the start of adult onset asthma. I was doing what
turned out to be a three month stint at jury service: a long
drawn out fraud case. I lost the ability to run so often missed
the first train home. I spent the evenings and days off painting
though, and eventually produced this:
To be quite honest, Lantern
was probably the last painting that I produced before illness
really set in that I was happy with. I was finding trouble deciding
what to do next but not realising why.
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, I had to take a pile of stuff to
the main post office, just short of a mile away. I had to sit
at the foot of a statue on my way there and when I had finished
my business I found myself unable to walk home. I phoned David
to ask him to bring my bike down so that I could get back. Madness:
how on earth as I supposed to get on it. David said it probably
was viral meningitis: I guess he just didn't want to worry me
too much. This left me both with severe vertigo and hardly able
to walk across the room, with legs numb from the knees downward.
I would look down at my feet but not be able to make them move.
I was taking part in an exhibition at Lincoln Center, New York
but never got to see it.
This somewhat cleared up after a couple of months, 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, according
to him, this gave me a 30% chance of getting totally better.
Never having been seriously ill before, this suited me fine,
because as an optimist I was bound to be one of those 30%! Never
mind the fact that I discovered that congenital spinal stenosis
normally became apparent when one was a teenager and was most
common with achondroplastic dwarfs and I was five foot 8 inches!
By early 2003, though, I was struggling to keep the use of my
right arm again, after a lapse of about fifteen years and 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 unable to think 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 even 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
My husband, David Wheldon, was 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, mainly viral,
have been thought to be linked with MS but as yet no evidence
had been put forward, which was entirely convincing.
However, my 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. My reading came back
very low: 1:64, which normally doctors would say is so low that
it doesn't need treating, but I responded straight away on starting
treatment. I was delirious for a few days and suffered a bit
from diarrhoea at first, but that soon settled.
More information about the
pathogen and its role in MS can be found here:
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
co-enzyme Q10 200-400mg a day, mainly for further anti-oxidant
acidophilus or lactobacillus sporogenes, several capsules as
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 maybe had
MS. I know knew why he had never taken me caving with him!
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 watercolours
at first which I was not particularly happy with: they seemed
positively amateurish and clumsy to my rather perfectionist eye.
I didn't keep anything from this period. Eventually I did manage
to produce something that I was not ashamed of, and here it is:
Entitled Blue Cave it
was an iris I found growing near to our front hedge, which suddenly
appeared one year.
I managed this painting soon
after I had done my first pulse of metronidazole. These were
early days in the three antibiotic treatment: Vanderbilt gave
metronidazole every day straight off. This was much to tough
for many people and the big trial folded because too many people
just stopped because they couldn't stand it. I managed five days
the first time I did it but have never done it for longer. Now
it has ben realised that even that is too much for many people,
so the recommendation now is to just take one tablet a day on
the first pulse, even stopping the first pulse after one day.
Better this than give up!
I had my second MRI just after
doing my third pulse. Although I had only been on the antibiotics
for six months, the scan showed not only no new lesions but several
of the existing ones had either shrunk vastly or disappeared.
There certainly would be no stopping me now! This pulse led to
some agonizing thalamic pains in my right arm though. Days of
sitting in the kitchen, shoulder against the aga, tears in my
eyes. The pain would move around anywhere from my right hand
to shoulder, appear to go away but then return. One thing though,
it always seemed to lessen at night, returning bang on seven
o'clock in the morning. During this time I attempted some painting,
even using 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.
Actually, as an aside, I can
write pretty well with my left hand, but back to front, which
makes reading it slightly difficult for most people.
After this scan and when the
pain went away, I changed doxycycline for rifampicin, still taking
roxithromycin and pulses of metronidazole. I found myself reasonably
able to tolerate rifampicin now, but it did still adversely affect
my walking: I had a tendency to veer off to the left at first!
After a year and one more scan
with no new lesions and a few more subtle improvements, because
I was doing so well, I switched to intermittent therapy, meaning
that I had to stop rifampicin and take doxycycline again. This
is because rifampicin has to be taken continually to avoid the
pathogen developing resistance to it. I could now do two week
courses every two to three months, of doxycycline and rifampicin
with five day pulses of metronidazole somewhere in the middle
or at the end.
Time for another picture, I
think. Undecided Tulip was a flower I saw in the tulip fields
near Leiden which we visited just before we saw that neurologist
for the first time. After the Blue Cave, his was the next picture
I was really pleased with, painted in 2005.
I had my last 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!
If you read these two sites
you will find many little tidbits about cork catching, wine bottle
opening, walking to a trig point 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
will be a great aid.
The following is taken from
somewhere in CPNhelp, 18th May 2006:
"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 couldnt 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. At this point I still
was not willing to see what was wrong with me, though: I had
improved somewhat from that so my optimistic self just thought
that I was going to get better, but I was wrong.
Lets 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 didnt
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 (mentioned above,) 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 shouldnt
be eating red meat anyway! Well, my answer is that I dont
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 hadnt 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 dont 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 hasnt
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 couldnt manage anything other than
a comparatively small watercolour."
Below is a picture which I
started in oils before I got very disabled, then dropped and
damaged it. When the treatment really started to work I managed
to repair it invisibly then in 2007 I finished painting it in
Its called "Isola Pioppi"
but it maybe it should be called "Avenue of Sight,"
named after my first web-site. 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 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.
Sarah Longlands, November 10th, 2009
Time passes and at an unbelievable
rate. It is now 2013, almost exactly ten years since my
diagnosis of secondary progressive multiple sclerosis. I have
been very lax in making updates, but I certainly have not been
idle as you can see by the amount of new pictures I have posted
on my site.
These ten years have resulted
in no new symptoms at all and much improvement, although I am
still unable to run without falling over. Many people seem to
see improvements in mobility as the main thing to aim for, but
I would disagree. Clearness of mind must be what to aim for and
that I have once more. It is now six years since I finished taking
the course of antibiotics and I still sometimes see small physical
improvements as well, but clearness of mind is paramount.
This was our Christmas card
from 2013, complete with my drawing on the outside and David's
The drawing is called The
Four Magi and three of them can be found in Arches National
Park in the United States. The fourth magus posed for the drawing
in my studio. I made the Arches magi, or 'wise men' as they re
called in the park, human size, whereas in fact they are vast,
standing atop a low cliff. The comet is Hale-Bopp, visible in
1997 from our back garden for several weeks.
Ariel, the Magus
I was one of the Magi;
The fourth one: the
never talked about.
Three is a divine number:
three Magi there must
Facts are otherwise.
I am the fourth, the
The one who got home.
None of the others
David Wheldon, 2012
This is an A3 drawing using
the same technique as the Ariel drawings, but from 1996, before
my recent troubles started. I now felt myself able to re-use
the technique which as far as I know, I had invented in about
1995. It involves applying Indian ink to Bristol board then scratching
part of it off with fine scalpels, then reapplying in some areas:
sometimes several times.
But now it is September,
2016, a further three years on. Some time last year, on hearing
the early results of the French trial using high dose biotin
as a treatment for people with both progressive forms of multiple
sclerosis, I thought it might be an idea to try it myself, to
see if any more improvements could be made. There are sound reasons
for trying this, since lower dose biotin is already found to
be very beneficial for people's nails and hair. These are both
ectoderm, as is the brain and nervous system. In fact in the
early days of embryonic development, the brain and spinal cord
are on outside the body, rather like a shell. When something
goes wrong in the embryonic development, various degrees of spina
bifida can result, this being when the spinal cord ends up not
being totally enclosed by the body. Some people can survive for
a long time like this, but others, like the younger sister of
my best friend when I was five or six, die before they are a
So, if the nails and hair can
be improved by taking biotin, it surely seems reasonable that
one's internal ectoderm might be improved by larger amounts of
this water soluble vitamin. So I started out by taking 100 mg
of the vitamin, increasing it to 200mg and sometimes 300mg, although
the trial could include up to 600mg a day. Here are the early
results of the three centre trial, from March 2015: http://www.msard-journal.com/article/S2211-0348(15)00006-1/pdf
I started the C pn treatment
back in August 2003, I finished the treatment in late 2007 and
have since then not had a single hint of MS returning: in fact
in the following years I have even had a few new improvements,
the most recent being the complete disappearance of my Babinskis
reflex, where my feet, especially the right one, would shoot
upwards if touched on the sole. This made cutting my toenails
an arduous process.
I guess that I wasn't expecting
that much to happen because I had already shown the real improvements
just by ridding myself of the chlamydia pneumoniae infection.
I was also aware that, unlike with being treated for an infection,
any results could be eight months or more in developing, however,
since starting over a year ago now I can report the following,
verified by David:
I am managing to get up the
stairs much quicker than before, although I wish I could get
over my tendency of walking up one step at a time when I am a
bit tired. We both also think that my general manual dexterity
has improved. I am certainly able to use my elliptical trainer
for longer before needing to take a break. Now I can easily do
two kilometres in one go, although I find it better to space
just one kilometre several times a day.
A very big thing for me as
an artist is that my vision has improved: I had always been pleased
that I have never needed to wear glasses and I hoped I would
always be that way, but over the last few years I had found myself
having more difficulty in reading small print. Well, most people
do eventually and I had reached menopause, when all sorts of
things start to happen if you are female.
I think I am one of the rare people who although now well into
my fifties and having had my first multiple sclerosis symptoms
when about 24 or before, I have never needed to wear glasses
or contact lenses. Over the last few years though, I was finding
it more difficult to read very small print, especially at night,
so glasses couldn't have been far off.
I have no idea if my latest
improvement is due to biotin or ongoing improvement from the
original antibiotic treatment but I am now able to read very
small print without difficulty, even in low light. I started
by taking 10 x 10,000mcg a day and did this until a couple of
weeks ago, when I decided well, in for a penny, in for a pound
and increased the dose to 30 x 10,000mcg a day, which means that
since I am still just taking the tablets, means swallowing thirty
tablets a day. I find this ok since they are very small, so I
take them in three goes of ten tablets or two of 15 tablets.
As an artist,I have always
been bit panicky about my vision and one of my relapses before
progressive MS set in was an optic neuritis, involving loss of
colour vision in my left eye. I panicked and thought at the time
that I was going blind but it only lasted a few weeks. Finding
reading small print more difficult though, is normally just part
of the aging process, so to be able to reverse this is worth