N.B. - This is quite long so why not save it as a text file and read it later! (Note for Lyme readers: this appears to bias towards Guillain-Barré Syndrome but my initial symptoms were of Lyme disease which was 'unrecognised' in the UK at that time. Confirmation of borreliosis came in September 2003)
Right, where do I start? At the beginning I suppose. (GBS tip #001 - Make yourself a cup of tea before settling down to anything). Right, now you're sat here with your cup of tea, (or whatever it is that took your fancy), and I shall begin. Deep breath..... Here goes....
I was living in Nottingham in the UK Midlands, 18 years old, in the Summer of 1976, working as a doorman/bouncer at a respectable nightclub. (Why do respectable nightclubs need bouncers???) I always had kept myself physically fit and was in excellent shape. I practiced martial arts, worked out regularly, lived a healthy lifestyle. I was hardly, if ever, ill. This one night I needed to take a break. It had been a hot and busy night and I was feeling uncharacteristically tired. I went and sat down in the restaurant with a coffee to relax for fifteen minutes. It was (arguably) approximately at this point that my clash with borrelia started. When I tried to resume my post my legs felt as heavy as lead. I attempted to pull them towards me so that I could rise from my chair but it was taking an almighty effort. I tried to stand but found myself in real difficulty. My manager saw that I was in some distress and came over to see if I was OK. I just guessed that I was more tired than I initially thought. I managed to stand by pushing myself up from the table but my legs just wouldn't respond as quickly as I needed them to. My manager knew me well as I'd worked for him for almost a year and he knew I wasn't one to be trying it on so he called my best friend, Mick, to come to take me home. When we eventually made it outside he was supporting me more than I could on my own. We tried to hail a taxi-cab but were refused, probably because I looked the worse for wear for drink. My legs wouldn't support me and kept giving way, and I guess I must have looked hopelessly drunk, hanging from Mick's shoulder. Mick didn't like the look of my condition and so decided to get me to the Emergency Department of the nearby hospital.
After what seemed an incredibly long time we were eventually seen by one of the most ignorant doctors I had ever met in my life. He checked me over and, as he did, something fascinating was happening to me in front of my eyes. Large yellow pustules and a thickened rash were breaking out between my fingers, on my hands and wrists. All I could describe them to you as is like huge yellow blisters. I hadn't realised it yet but the same thing was happening on my legs, spreading outwards from my knees. This would have been of obvious significance now, but not to this doctor. He put my condition down as one of ill-health brought on by eating junk food, living a seedy life, drug abuse... can't remember what else he 'guessed' at... the absolute opposite of everything I was. I can remember what he said - "If you looked after yourself properly you wouldn't be here wasting my, and everybody elses time...". If I'd been able to I think I would have knocked him down. When I have since looked in medical books I feel that I should have been isolated there and then, and now since the borreliosis diagnosis I am sure I should. This, though, was UK in the 1970s. Hepatitis was little heard of, Lyme disease, or what was to become known as Lyme had only really been recorded in the States just recently and was unlikely in the UK. I could even have had some major liver problem.
Anyway, we were dismissed and half-dragged, half carried, Mick got me home. My apartment was up a flight of stairs but my friend persevered and got me up them. By this time I could barely speak. I could utter some words but my mouth wouldn't move to form them properly. My body was now beyond my control. My mind was working overtime, though I still thought that maybe it was some huge fatigue that would pass with sleep. Mick, exhausted by all his exertions, lay me down on the living room rug and covered me with a sleeping bag and stayed to watch over me.
Some time during the night I needed to urinate. I couldn't move my legs at all and my arms and hands were so stiff and painful. It was the most scary feeling. I don't believe I've ever been as frightened. I'd had nightmares as a child where I would wake and found that I couldn't move, or breathe, or speak but the realisation that this was no dream was growing fast. I tried and tried to move but nothing would work. I called out, but I had no voice. I was forcing myself to breathe and I thought my heart would burst. I don't know what would have happened if my Mick hadn't been there to watch out for me. I don't know if I'd managed some sound or what, but he found me laying on the floor, soaked in urine, obviously distressed. I think I owe him my life. No - I'm sure I do owe him my life. If he hadn't stayed with me that night I can hardly bear to think about what may have happened. Being terrified is one thing - to be terrified and alone, well that's something else... Anyway, he wasted no time in calling for an ambulance. One arrived but there seemed to be some problem with their radio and they wouldn't take me. They phoned for back up. Eventually another arrived and the ambulancemen tried to get me on a stretcher but my body was siezed into a Z-like position. They tried to straighten me out but every time they touched me it was a burning agony. I couldn't even ask them to stop. Somehow they managed to get me strapped into a chair and I was taken to the hospital like that. I must have blacked-out because from here on my memories are very hazy. Unfortunately I only seem to remember the bad bits but I guess they're as important.
In the hospital I regained consciousness and found myself in a room on my own. At first I just remember lots of blood pressure and temperature-taking, gentle proddings and pokings. The nurses were always dressed in theatre greens with masks. At some time Mick and other friends had been allowed to see me but I remember they always made them stand at the door to the room, dressed in theatre greens with a mask too. It began to dawn on me then that they were treating me as something really infectious, I guessed that must have been because of the septic blisters. I was treated with penicillin G - 4 injections down each leg each day. Those were so painful. This went on for about ten days and I remember after the last day (I hadn't known it yet) the nurse came in with her little kidney bowl and I just burst into tears. I just couldn't take any more. She realised what I was complaining about and smiled and told me she had just come to give me a shave!!
I don't know how many days I'd been like this but eventually I remember getting a little movement back in my body. Mostly the head and chest, some in the arms and a little at the knees. At some point a senior nurse had come to take samples of 'all' my body fluids. She was extremely - well, impatient I suppose. I guess she was of the same opinion as the first doctor to see me, that this was my fault, so a bit of rough treatment was no less than I deserved. I don't know - a lot of time has passed. Swabs were pushed into the septic patches on my hands, the skin breaking really easily. These septic blisters were now on every joint of my body but my hands were badly rashed. They said it was scabies but instead of treating me with a prioderm or something like that the blisters were coated with iodine even though my skin was biopsied. I had something inserted into my bottom to take some sample. It was extremely painful and very cold. I remember it made me cry out and I was told not to be such a baby. At the time my body still reacted to every touch which was like electric shocks.
Anytime that I tried to get out of bed I was quickly put back in. I couldn't walk but was desperate to. The times that I did manage to drag myself to the corridor it wouldn't be long before I was caught, reprimanded, plonked in a wheelchair and tipped back into bed. I wouldn't give up. I got rather good at supporting myself on radiators and window sills as I fought to get some mobility in my legs and on one occasion, with the help of another young man, got into the hospital grounds. I was so serious about not going back that my clothes were taken away and every obstacle was put in my way. I was told I'd probably never be able to walk again but this boy wasn't going to give up. As long as I had the determination I would fight them tooth and nail and I didn't care how much they punished me. Eventually I was taken from the hospital into a convalescent home miles from the city. This was actually the best chance I had of regaining my mobility as I wasn't supervised as much as I had been and every chance I got I was off, down the corridors, dragging my useless feet and legs behind me... Eventually my determination proved them all wrong!
As I said earlier I can only remember the painful memories. I don't actually remember going home. I don't know how long I was in hospital. It is a sad fact too, that any record of this hospital stay doesn't appear in my medical records, even though they have me on record as having an operation for a strangulated hernia a little time later! I suspect some malpractice and even though my GP's on the case like a terrier with a rag between his teeth, I don't know if we'll ever get to know what went on; what they thought; suspected... Why should a patient's record disappear? I would tend to think that it was a nasty dream except for my friend who experienced all this with me. Anyway, this is only a tiny part of the story...
I seemed to have recovered from this initial episode fairly well. The scars from my blisters took a long time to heal. I got a new job as a debt collector. Lots of walking involved but no problem there. After leaving school I had earned myself a Diploma in Scientific Studies at college and this eventually got me a position as a destructive test engineer in the Vickers Shipbuilders up in Barrow in Furness so I moved up to Cumbria. I started this new job in 1980. Some time in 1980 I started to experience uncomfortable pains in my legs. These always seemed to worsen when I went to bed or relaxed. I approached my GP about them and I was sent all the way to Newcastle General for extensive testing. One of the tests involved was a pinprick test. I had needles inserted into my legs and it was found that down the major nerves in both legs I had almost no feeling at all. I also had nerve conduction studies and, although they showed a delayed reaction, it was decided that I had a haematological problem. The first hint of a proper diagnosis occurred on a day when I was introduced to some medical students as a bit of a medical curiosity. My history was described to them and they were invited to hazard a guess at a diagnosis.
Looking back I feel that this was unfair to me. Various tests were given. I couldn't feel needles in my hands or feet, my toes would curl upwards when my soles were scratched, I had no reflexes below the knees. Diagnoses were offered within my earshot including those of muscular dystrophy, multiple sclerosis, polio, peripheral neuritis. Little there relating to a blood problem. I was sent home, head spinning, with an appointment to see a consultant neurologist. The discomfort in my legs remained but I wasn't too bothered by it. In 1981 I married. In 1982 my wife and I moved into a ground floor flat. One day the drains blocked and we had effluent flowing around the back yard and doorstep. I spent the night with the landlord trying to unblock the drains and cleaning up the sewage. Very soon after I developed a very bad case of gastroenteritis. I attributed this to the sewage. I became very ill and lost a lot of weight. I have a photograph that I have shown friends and they find it hard to believe that it's of me. I looked like a survivor from a concentration camp. My waist size dropped from 30ins to 26ins. I lost all my muscle tone. I eventually returned to work and one day, whilst lifting a chain block from the back of a truck, my legs just collapsed under me. I couldn't stand up as all the feeling had gone. I ended up back in hospital, this time in the Neurology Dept at Preston. I was there for a few weeks. More extensive testing. Parents were invited in for some genetic testing (Mother suffered from Raynaud's disease.) I was sent home when everything seemed to have cleared up on it's own only to find that my parents had been led to believe that I might have AIDS. Blood tests soon cleared this up, but that was a scary feeling and led to a fair bit of suspicion within the family.
The next few years went by without any real hitches. I still had patches of numbness in my legs. The pain at night was often unbearable and I had developed myoclonic jerks. My moods began to change and my wife and I spent more and more time rowing. Life was becoming a real strain. We went our separate ways in 1986. I lost my job at the shipyard, or rather, I resigned before I was sacked. Apparently, though I'd never noticed it, I had taken every Wednesday off for two years and the management weren't happy about it. Looking back I can see what had happened. Monday and Tuesday I worked, Wednesday I'd wake feeling really fatigued, Thursday I'd be fine after my rest. Then the weekend would come and Saturday would find me fatigued again, the rest of the weekend I'd spend resting again. And so on. That was when my first bullseye rash (EM) appeared.
In 1988 I returned to work, this time as a project training manager for the local council. The job suited me well because when I needed to rest I could do this by using the flexible working times that we were offered. Things went well for a while. I was in a new relationship. Things were looking up. And suddenly my health changed again. All the usual problems were there but I started to drop things. I found I had to watch what my fingers were doing. I started to get double vision, migraine, pins and needles in my hands, legs and feet. I was forced to retire from work as the chronic fatigue, myoclonic jerks, restless legs (RLS), paraesthesia and pain made it impossible to function properly.
One night my legs gave way on me again and I tumbled backwards down a full flight of stairs, knocking myself out. It was now 1990 and things were deteriorating quickly so I was rushed back to the Neuro at Preston. There I got my first EMG. I'll never forget that! I was wired up in the usual way, the test was commenced and nothing was registering. The current was cranked up - still nothing. Then the technician gave me a cushion to cuddle, stuck a bit of rubber between my teeth and apologised. The current was increased, and increased, and.... bang! the most excruciating pain I've ever felt in my life. The neurologist told me after that the axons in the nerves of my leg were pretty badly damaged and that was why I'd tolerated such a high current. They found that I had accumulated many disorders; acute inflammatory demyelinating polyradiculoneuropathy, AMSAN, bowel neuropathy, continence problems, cluster headaches, temperomandibular joint disease (TMJ), myoclonus, chronic fatigue, lower limb pain, RLS, acrodermatitis, recurrent EM, short term memory problems, photophobia, paraesthesia, hyperaesthesia, recurrent lung abscesses and infections, panic attacks, mood swings, absent reflexes in the lower limbs, ... the list goes on. I was sent for a leg and arm nerve and muscle biopsy. This was kind of a nice memory, though a painful one. I had to have the biopsies without the benefit of an anaesthetic as apparently the anaesthetic would have damaged the nerve structures that they were hoping to look at. Well - I had the two most gorgeous nurses, one to sit on my leg (sigh) and one to hold my hand ('nother sigh). I remember the actual incisions were not really painful, just kind of hot, but as the nerves were cut into, my... did my muscles twitch!
So treatment began in earnest, baclofen and carbamazepine for the muscle spasms and nerve inflammation, amitriptyline and clonazepam for the poor sleep, restless legs, and myoclonic jerks through the night, ergotamine for the headaches topped up with co-proxamol, various rounds of amantadine, neurontin, dixarit, corticosteroids for the EM which was believed to be eczema besides it's obvious classic bullseye appearance.... I was expecting a lumbar puncture amongst all that. It seemed everyone else in my side-ward had had one. I wasn't looking forward to it as most of the patients in my ward that were complaining of seriously bad headaches afterwards. Anyway, for whatever reason, I escaped one. I do remember that my legs had become really sensitive to touch. I couldn't even have a single bedsheet resting on me so I slept with a cradle over my lower body. Eventually the neuro came to see me and threw tons of medical jargon around that I struggled to understand. I managed to get my named-nurse to explain, but all I was given was that I had a progressive acute motor and sensory axonal neuropathy. When I was returned home I asked my GP what this was and he said it was just a name that covered a realm of nerve diseases where the axons had been damaged. I asked him to be more specific but he couldn't.
The migraines got more frequent, sometimes I couldn't even stand the feel of hair moving on my head, I could see black spots in front of my eyes most of the time, the pains and jerks got worse, and I started tripping as I developed foot drop. I was back in hospital, this time for a CAT scan. It was thought I had a brain tumour. Well, nothing was detected. I started to receive a medication for each of the different symptoms that I displayed. I had MAFOs (moulded ankle-foot orthoses) fitted to both legs to straighten my ankles and I needed crutches to walk (and balance). It was about this time one specialist was toying with the idea that things were psychosomatic. That really hurt. Medications were stopped and replaced and when one turned out to be a type of chalk or sugar pill, discovered thanks to my trusty British National Formulary, I really started to lose the plot. I knew what was real and what wasn't. Even the medical board who were to decide if my insurance should cover a long-term disability payout said they believed I was 'swinging the lead'!
In the '90s, healthwise, things stayed as they were. I eventually learned to walk without the MAFOs by watching how I placed my feet. I had long since come to terms with the idea that nobody knew what was exactly wrong with me and now accepted the pain, strange symptoms, occasional clumsiness as a fact of life. One of my medicals showed a high sugar level in my urine so I was tested for diabetes. The first test was positive. This was great because a diagnosis of diabetes would explain most of my symptoms. Unfortunately (?!) the follow-up test was negative. In 1992 I received a note from my GPs secretary to call in to see him. He had an address for me and said I should maybe give them a call. It was the phone number and address of Glenys Sanders who, as you probably know, had founded the GBS UK Support Group. I had a wonderful chat with Glenys and she said that I probably fitted in to one of the neuropathies that they supported. I joined the group. I asked my GP if he thought GBS was my illness but he said that he had seen so few cases during his career that he couldn't be certain.
In the mid '90s I decided to become a counsellor for the support group. I couldn't bear the thought that there may have been people who might suffer alone as I had done and felt I had had enough experiences to be able to help (hence this web site). Cumbria is a huge county and there was no one local to visit hospitals and patients. I was accepted into University and began to study Psychology and eventually obtained a DipHE and took my elective in Applied Psychology. Still my health was getting no better. I was having many relapses, mostly small, losing feeling in my hands, legs and feet, some big with almost total losses of sensation and weakness. I started to build up confidence through my counselling and decided to take my neurologist on for an absolute diagnosis. He eventually granted me an audience, listened, stood up, said he could remove portions of nerve from my legs that would stop the painful sensations, though I might never walk again, and left. I got a new neurologist.
In 1996 I went to see a pain specialist, a consultant anaesthetist. My, was this guy thorough. He went over my history with a fine tooth-comb. Fitted me with a TENS machine (Transcutaneous Electrical Nerve Stimulator) for the pain in my legs, and arranged an MRI scan as he thought I may have MS. I asked him if he was sure of this and he said that from my medical records and tests he had carried out he could tell that I had some damage to my central nervous system and that MS was a possibility but it was also an illness that most specialists were reluctant to diagnose. He also said that my original problem with my paralysis and septic blisters would have been Lyme Disease, which although detectable now, would have been extremely rare in the '70s. GBS has been linked to Lyme Disease, or rather, as I now know, Lyme disease has been misdiagnosed as GBS. I had the MRI in 1998 (living where I do medical services such as this are shared with other health areas, so there are massive waiting lists). The scan showed negative for MS but also showed up some compression of the 5th vertebra at my neck, which could account for some of the clumsiness in my fingers but was more likely to lead to backache, something I've never had. The pain specialist told me that he would consider a diagnosis of acute axonal GBS based on the symptoms, although GBS doesn't usually have any CNS involvement. I had never mentioned to him about my membership of the GBS group so this seemed to confirm the things I had discussed with Glenys. I asked him about CIDP (chronic inflammatory demyelinating polyradiculoneuropathy, a variant of GBS) and he said this was likely but the progressive AMSAN was most probably the case.
This was how things were left. I don't really notice the pain much now but my last medical showed some liver damage that was attributed to the carbamazepine. I stopped taking all my medications for a while but soon had too many problems to cope with. I was also aware of how bad the pain really was. I became an insomniac, the jerks in my legs were keeping me awake, I was extremely fatigued. I couldn't eat without falling asleep and my memory would fade in and out. I couldn't concentrate on anything. Inevitably I had to be remedicated. I will continue as a counsellor for as long as is necessary as by all accounts I do a good job. I will keep chipping into the various mail groups as well. I get so many letters from people who enjoy my posts and quite honestly I get a boost from it.
I have always believed that the true answer to my multiplicity of problems was out there. I've been quite happy with the labels that I've been given. My pain specialist asked me at our first meeting if I would prefer him to be totally honest with me or if there would be things that I would rather not know. I asked for total honesty but I've never pressed him for anything that may be more obscure than this. I don't seem to be deteriorating but I certainly don't look forward to the relapses (actually they seem to be getting further apart - hopefully a good sign - or am I just getting too used to them after over twenty years?). Sometimes I feared for myself, living alone. Thoughts of falling and no one knowing about it. Loneliness and fear would creep up on me in the middle of the night. Though now it doesn't anymore! I met a special person, my special angel, who she was working in Singapore at the University. We became engaged and Kai Hsia and I were married in S'pore in July 2000.
In March 2003 I suddenly took a turn for the worse. One of my biggest fears about the axonal neuropathy and the affectation of my CNS was that I may one day lose or suffer damage to one or more internal organs. Once the nerve control had broken down here I was sure all control would be gone and so would I. After suffering what I thought had been an incredibly stubborn indigestion for a week or so I succumbed to a heart attack. The 12th March, 2003 is not a date I shall forget. I was rushed into hospital and was found to be suffering not only with an MI but pleurisy as well. It was never decided which caused which. I now have to contend with congestive heart failure as well as the chest infection that hasn't cleared, and on top of that the AMSAN is still there. So many tablets make me rattle when I move and now I seem to be spending as much time in hospital as out of it. But we're not beaten yet!! The only bit of me that doesn't hurt all the time is my head - but the GTN spray for the angina soon takes care of that. Life goes on, drastically changed I should add....
In June I was readmitted again with another suspected MI. Having lost 6 dear friends to heart attacks in my life, the youngest at 30 and the oldest at 40, three of those with 'supposed GBS' in the last year, I really sat down and did a double-take on my life. Things had to change. No sly cigarettes, no alcohol, a good diet, even my favourite pain relief, the ganga, has gone! At 45 this was the last thing I had expected. It was thought that my MI was due to high cholesterol and blood tests seemed to confirm this but a heart scan showed my heart to be in good shape and my cholesterol levels dropped fast when I started on statins and have remained so since. Now the reason for the angina has been put down to muscle spasms in my heart and surrounding blood vessels. More medication... investigations continue.
Then in September, 2003, after much cajoling from my mother, I went to see a doctor in the UK who was on the edge of some ground-breaking stuff in the realm of chronic-fatigue spectrum disordrs and multi-system disorders like my own. My mother was being treated for hypothyroidism and she has various metabolic and neurological disorders to contend with and was seeing him. Eventually I relented and went 'private' for the first time. He listened to my history, leaned back in his chair and said how he thought I had borrelia in my blood. So he tested me there and then with his new Bradford microscope and as we sat there talking I had one eye on him, one on the monitor, and could see that as the blood cells were dying these little buds were popping out of them. "Borrelia", he said. "This is what's maing you feel so ill". So he was to start me on Fowler's Solution, a medicinal arsenic to kill the spirochaetes, followed up by a long dose of antibiotic. This has since been replaced by Samento Cat's Claw Liquid Extract, a herbal antibiotic/immune modulator.
Here we go again, I thought, but for the first time in my life the 'antibiotic' is doing something. My myalgia is hardly there, my memory has returned, I feel fit and bouncy, my RLS is practically all but gone. I am starting to get the life back that I lost so many years ago. He confirmed borreliosis recently and for me that confirms the Lyme disease that we thought I had at first. If only the antibiotics had been sustained at that time... Who knows what my life would have been like. I'm sure I'd never have met my special angel, so some good came out of it.
So - watch this space. We're right on the cutting-edge of something here. I cannot believe though, how many of those with long-term GBS aren't prepared to try this route. 27 years being treated unsuccessfully for the wrong disease, and not the disease that was suspected back then, I am now left with Stage III Lyme disease and the neurological ailments that go with it and many of those, I know, will never reverse. I feel cheated. My MI may have been prevented, my career may have been intact, but I am slowly getting my life back and even if this new drug regime doesn't work out there is so much promise in the Lyme field that I can look forward instead of looking back.
Anyway, enough said. I've probably forgotten as much as I've written but it's done now. It's been painful, there have been tears, but it feels good to be able to share our experiences. This story has glossed over some events in my life which were due in part to the huge depressions that came along and for the protection of family and friends I have left out the gory details. They have no place here yet but are possibly becoming known as a symptom of borreliosis. If they do, then I will include them at that time. This story is far from over and the last 12 months have been a minefield but thanks for listening.... and keep checking the updates :)
Kezzi. . . September, 2005
Everything you wanted to know about GBS...
GBS Support Group of the United Kingdom
GBS Foundation International USA
Last updated: 15th September, 2005
