Up until 1997 I had been a fit, active person. I enjoyed long distance cycling, hill walking, and skiing. I enjoyed a very active social life and a challenging and busy job. I got a buzz out of living a full life. So, where did it all go wrong? In 1997, I had been given several injections before I went abroad to work – polio, typhoid, hepatitis and I took antimalaria tablets for six months. I was really tired and drained all the time and my eyes kept ‘wobbling’ or that is what it felt like anyway! I put this all down to the antimalaria tablets and working long hours in heat and humidity; it would make anyone tired. I also had a problem with diarrhoea and eventually it got so bad I took myself to the nearest city for testing. I was diagnosed with a bacterial and fungal infection of the guts. I took the pills and that was that. After my return to the UK I never fully recovered and over the following years I suffered periodic diarrhoea, muscle tenderness & twitching, cognitive impairment and mental fatigue. I had many NHS tests done. Nothing was ever found. I was also getting some other symptoms. I developed a horrid fear of flying, which was very frightening. I had previously found flying to be an adventure and exciting. Now, I was a wreck when we hit turbulence.
I carried on working. I found myself in the position of being able to work, provided I took no exercise at all. I worked and slept, worked and slept, for a year, before I took a turn for the worse and in 1999, I was diagnosed with depression, by my GP. With the benefit of 20:20 hindsight it was clear that something was wrong. I even discussed ME/CFS with my boss. Anyway, over time I managed to muddle through, taking no exercise and that was how it continued for a while. The antidepressants lifted my mood and I ignored the fatigue and pain, as I had been told it was just part of the same thing. When I look back this is a bit irrational as gentle exercise should have blown away a depression or made me feel, at least, a bit better. It did the opposite. I may have been depressed but it was a symptom and not the basic cause.
Since I had not been exercising I had gained around 50lbs in weight. I was due to get married in September 2001, so after a year of no exercise I managed to shift some of the weight and I tried to get fit. I worked up to about one hour aerobic exercise, e.g. running, swimming four times per week but I never once felt fit. The weight dropped off very, very slowly. I always joked about a sluggish thyroid but my blood test results were always normal. Arghhhhh. So, I was slim(ish) for the wedding. I managed to look good on the important date but I was bothered that I was not loosing weight at the speed I thought I should have done. I had never achieved any feeling of fitness from the exercise I was doing and I was mentally and physically exhausted.
After the wedding I was completely exhausted and when I returned to work I had another crash into what I now know is moderate ME/CFS. I took it easy after this. I put my career on the back burner; my colleagues were asking me what was wrong. I just thought I was not so good at my job, I couldn’t cope and I wasn’t up to it. Eventually, in 2002, an opportunity arose and I took redundancy. I was too mentally and physically exhausted to even consider working as I had done previously. Plain and simple. By this time I could not handle stress or pressure. I just wanted to rest. I used to joke that I wanted to be a pussycat and sleep all day. I lived to regret that.
In 2003, my husband and I moved house to Chester. He started to build his own business and I got a job in consultancy, which was more mentally challenging, with fewer hours and very little physical activity. I worked from home which meant I could lie down if I needed to. However, it did mean driving a lot, which whacked me out.
In Jan 2004, I had a bad cold & sore throat and I took a week off. About this time I had started some gentle swimming and was really enjoying it. I attributed the fatigue and pain to be lack of fitness. I was also doing some interesting work and I was really enjoying things. I was just about coping with the fatigue. Then it all started to go really pear shaped………
By March 2004, I had to give up work. I found I could not think. I could not remember what I was doing or what I had been doing. I was exhausted, both physically and mentally. I had constant headaches, what felt like sinusitis where I could provoke a worse headache by rubbing my eyebrows, sore joints, muscle pain, night sweats, poor word finding skills, sensitivity to noise which made me both mentally and physically exhausted and photophobia. I needed to sleep all the time and I did not feel refreshed afterwards. I was confused, anxious and depressed. I had sore throats, swollen glands, and diarrhoea, horrid PMT and generally I felt lousy. My GP put me on antidepressants. I went to see a psychologist and my work sent me to a psychiatrist! My boss did not believe I was depressed. The psychiatrist diagnosed me with ME/CFS and told me to find a specialist, which I did. I contacted my local ME/CFS self help group in Chester and asked about their experience with specialists. They gave me the name of a doctor who was working on the biomedical model of the illness. I was convinced that I had a physical illness. There may have been a psychological component, for example the depression and anxiety, but they were symptoms and not the basic cause. Many doctors still believe that ME is psychological. This is extraordinary. There is more than 50 years of medical literature to the contrary.
So in January 2005, my husband and I went to see a ME specialist. He confirmed the diagnosis of ME/CFS but he was also prepared to tell me what was causing my illness. He asserts that most ME/CFS patients have several infections, including chronic borreliosis, which is a bacterial infection. A few types of the bacteria borreliosis cause the illness Lyme Disease. There are over 300 different strains of the bacteria and currently medicine cannot test for all of them. The type of borreliosis I have is not just spread by the bite of a tick but also from other biting insects like fleas and mosquitoes and also there is growing evidence that it can be spread sexually and passed from mother to child in the womb. To make things more complex. A tick might have bitten me but I was unaware of it happening. Anyone who camps, hillwalks, mountain bikes and other outdoor activities in infected areas could be at risk of being bitten by an infected tick. I’ve walked, camped and cycled in NE USA, Switzerland, Scotland, Lake District and other endemic areas. It is easy to miss being bitten, especially by a nymph tick. They are the size of a full stop. My ME specialist also finds other co-infections such as Blastocycstis Homonis (gut parasite), Chlamydia pneumoniae, Bartonella, Babesia, Mycoplasmas and Strongyloides (microfilaria) parasites and others in more than 90% of the ME patients he sees. Reactivated herpes viruses appear to play a part too.
A stool sample was sent for parasite analysis, a 24-urine test for thyroid function was sent to Holland, and a saliva sample for Cortisol & DHEA sent to Kent and my specialist did a blood test. He used a high resolution, high magnification, dark field microscope (at x10,000 magnification) to look at the blood and we were able to see some bacteria in my blood. This was a moving moment as we could clearly see bacteria in my blood and evidence of damaged endothelial cells. My thyroid test came back borderline-low, as did my DHEA and Cortisol. This helps to rule out depression as a basic cause of my illness. My stool sample showed up a parasite (Blastocycstis Homonis) that I had picked up in the Far East, back in 1997. It can be spread in the UK by unwashed hands touching food too. In the general population the expected frequency of infection with B. homonis should be <5% of a random sample of patients. My doctor finds this parasite in 25% of ME/CFS patients.
He started me on a quinolone antibiotic and an immune modulator. I had a horrid Herxheimer reaction, which lasted for 4 months. This is a classic ‘getting worse before you get better’ response to the drug therapy. It is quite clearly distinct from an allergic reaction to medication. Some of my symptoms got much worse and some improved. I developed worse arthritis in my shoulders, neck and the top of my back. My fatigue magnified and all I could do was sleep. The general swelling in my abdomen reduced and I had less diarrhoea. I felt useless and utterly whipped out but I remained strangely positive because I had been told that I would get worse before I got better.
During this time it sadly became clear to me that my NHS GP did not understand my diagnosis and also was not willing to support it. I was very hurt by this lack of support and I to this day I think it has been detrimental to my health not to have had local support. I have since changed my GP and I’m slowly building a relationship with him. I have found this to be hard as my confidence in the NHS system has severely dented by my experience.
My husband is incredibly supportive and through him and my own knowledge as a scientist I managed to keep going with the treatment. I shudder to think how other patients cope with this type of situation if they do not have a scientific background. The charity Lyme Disease Action has been fantastic. Their website (http://www.lymediseaseaction.org.uk/) is full of information. Also the charity has an online support group (http://health.groups.yahoo.com/group/EuroLyme/). This provides scientific and moral support, which is just fantastic. My husband and I have attended three conferences, organised by Lyme Disease Action, where we have been fortunate enough to hear speakers from the US, UK, Switzerland, Scandinavia and Eastern Europe. This has given us tremendous confidence that my diagnosis is correct and that I am receiving the best treatment currently available, even though we have to pay for it ourselves. My hope is that by raising awareness about this condition more doctors in the UK will take an interest and more people with borrelia, and other similar infections, can be helped.
By May 2005, I was slowly improving and we added some different antibacterial drugs to help me to get rid of the B. homonis infection. This was when I noticed a big improvement. My arthritis vanished. What a relief that was. The headaches reduced dramatically too. Over the next couple of months I continued to slowly improve.
In June 2005, I started a new regime of different varied antibiotics. This was to ensure we were attacking and killing all forms of the bacteria. The borrelia bacteria can change into different forms to evade the immune system. This is key to its survival and it also makes the bacteria harder to detect, which is why the illness needs to be diagnosed by a trained doctor. Unfortunately there are only a few doctors that Lyme Disease Action are aware of, at the moment, who understand the illness and are treating it in the UK. They all have to work privately as there is some controversy over the interpretation of test results. Many doctors in the UK take the view that a negative NHS result means you do not have the disease. In reality, the NHS tests are frequently negative because science does not yet know about all the different types of the bacteria and only a few are tested for. Also the bacteria differ in different parts of the world so if you have travelled a lot, like me, then a NHS test could well be of little value. What is of value is the evaluation of the patients’ symptoms. Borrelia can cause any number of symptoms and it is the careful evaluation of these that allows doctors to make a clinical diagnosis (based purely on symptoms). Also the herxheimer reaction, that I explained earlier, gives the doctor confidence in his/her diagnosis. Every six months we vary the antibiotic regime and each time I make more progress.
I also take some supplements to help my immune system. (Milk thistle, Vitamin B, C and E, CoEnzyme Q10, N-acetyl L-Carnitine, Alpha Lypoic Acid, SODase, and Magnesium). Probiotics and live yoghurt also allow me to ensure I do not pick up fungal infections, which can be a problem with in a poorly managed antibiotic regime.
On Tuesday the 13th of June 2006 I recorded my first day completely free of all ME/CFS symptoms. I look forward to many more. So far, progress has been steady with the odd set back, usually when I try and do too much. As borrelia is a very slow growing bacterium. Antibiotics are mainly effective at killing the bacteria when they reproduce. As growth is a slow process it is clear that long-term antibiotics are required to beat it. I have recently completed a three-week course of the antiparasitic medication ivermectin for a suspected Strongyloides (microfilaria) infection of the lungs. This has vastly improved my ability to do aerobic exercise and may well turn out to be a significant pathogen in those with ME/CFS.
Today, I can read and do mental tasks, for most of the day. I am not in constant pain anymore. I hardly need to take painkillers. Before I was getting thorough the maximum allowable dosage of Ibuprofen for day after day and still I was not in good shape. The anxiety and depression and general confusion have completely gone. My ability to handle stress has improved vastly. I am doing some voluntary and paid support work (2-3 days per week). I am also working one day per week in a shop, on my feet all day. I have lost 20lbs in weight, largely through just being more active. I have 55lbs to lose but now I am confident that this will go in the next year or so. My sleep has reduced from an average of 16 hours per day to 8 hours per day. My sleep is refreshed too. I can now go to the gym to lift weights once per week and have a gentle swim once per week too. I use the sauna and hydrotherapy pools, which I find helpful. The heat helps the antibiotics to penetrate deep into bodily tissue. I have occasional joint pain and sore tendons. I have more energy and I can do the housework, do the weekly shop and walking without repercussions. I have a pretty active social life and I see friends at least once a week.
I had to give up driving for more than a year. I found this one of the most mentally demanding and tiring things when I was very ill. In July 2006, I was well enough to drive to my specialist and back (90 miles) without any adverse effects. In August 2006, I drove to Scotland and back to visit my family. This is a trip of more than 500 miles and I only needed a bit of rest. I’ve been well enough to travel to London on my own several times to attend training, for my work, and also to attend a ME conference. My world has opened up again. I successfully completed a conversion degree in Psychology in October 2006, and I am now studying for a doctorate. My dissertation researched nurses’ attitudes towards those with ME/CFS and I presented my findings at the ME Research UK conference in Edinburgh, May 2007 and is being presented at the BPS conference, 2008. I am working with GWS patients for my doctorate.
I’ve been given the all clear from the B. homonis parasite infection. I still have some way to go but I consider myself to be 95% recovered and still improving on antibiotic/antiparasitic therapy. I have given fifteen talks to ME groups around the country and I’ll continue to give more talks to spread the word regarding chronic infections and their link to ME/CFS.
Joan Crawford March 2008