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 take them.


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 look.


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:

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 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!
-a

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 CPNhelp 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 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. 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.


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 (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 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."

 

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 oils.

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 poem inside:

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 one who's

never talked about.

Three is a divine number:

three Magi there must always be.

Facts are otherwise.

I am the fourth, the elastic one,

The one who got home.

None of the others did.

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 year old.

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 Babinski’s 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 mentioning.

 

 

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