ME sufferer Joan (address provided)

Diagnosed: 1999


Up until 1999 I had been a fit, active person. I enjoyed long distance cycling, hill walking, sailing, and skiing. I enjoyed a very active social life and a challenging job managing an oil refinery. I got a buzz out of living a full life and I did not prescribe to the notion that stress is bad for you; for me, a challenge was a good thing.

In 1997, I was offered a five-month trip to build a Palm Oil Mill in Indonesia. This was a great opportunity for me to travel and get up the career ladder. Unfortunately, this was when all my troubles started brewing. Before I went away I was really fit and healthy and I was going to the gym and doing lots of cycling and really enjoying it. I had even done an 800 mile trip across the Pyrenees mountains and two other similar length trips around the mountains of Provence and the Cote D'Azur in the South of France and Southern Spain.

So, where did it all go wrong? I had been given several injections before I went abroad - polio, thyroid, Hep B etc and I was on antimalaria tablets. 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 off to Jakarta 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. I had many tests done in which we never found anything wrong. I was also getting some other symptoms including developing 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, including through several promotions. 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 I was diagnosed with depression. With the benefit of 20:20 hindsight it was clear that something was wrong and 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 made a big difference and I ignored the fatigue as I thought 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 loose 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 and 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.

After the wedding I was completely exhausted and when I returned to work I had another bought of very mild depression. 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. The alternative was to go abroad and head up a new business - a big promotion - I walked away. I was too tired. Plain and simple. I could not handle stress or pressure and 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. However, it did mean driving a lot.

In Jan 2004, I had a bad cold/sore throat and I took a week off. At the same time I was swimming again and really enjoying it. I was also heading up a great project working with some really interesting academics and government departments and I was really enjoying things. Then it all started to go pear shaped.........

By May I had to give up work. I found I could not think. I was exhausted, both physically and mentally. I had headaches, sore joints, night sweats. I wanted to sleep all the time and I did not feel refreshed afterwards. I was confused, anxious and depressed. I had sore throats, diarrhoea, horrid PMT and generally I felt lousy. My doctor put me on antidepressants. I went to see a psychologist and my work sent me to a psychiatrist! He diagnosed me with ME/CFS and told me to find a specialist, which I did.

I contacted the local ME/CFS self help group and asked about their experience with specialists. They gave me the name of a doctor in Bolton 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.

So in January 2004, I went to see Dr Andrew Wright. 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 chronic infections including chronic borreliosis (from insect bites - not just tick bites), micrococcus luteus, staphylococcus cohni, Blastocycstis Homonis (gut parasite), Chlamydia pneumoniae and others. I send a stool sample to the Leeds Teaching Hospital, a 24-urine test for thyroid function to Holland, a saliva sample for Cortisol & DHEA and he did a blood test. He uses dark field microscopy at x10,000 resolution to look at the blood and we were able to see some bacteria in my blood. He later uses an immunoflueroescent assay to confirm borrelia. My thyroid test came back borderline-low.

He started me on Samento - A Cats Claw natural product. This is a quinolone antibiotic and an immume modulator. I had a horrid Herx reaction, which lasted for 4 months. My symptoms got much worse and I developed arthritis in my shoulders, neck and the top of my back. My fatigue was worse and all I could do was sleep. I felt useless but I
remained positive because I had been told that I would get worse before I got better. I was slowly improving and I took three lots of antibiotics to get rid of the B. homonis infection. (2 weeks of 3x per day Doxy, Co-tinadazole, Septrin). This was where I finally notice a big improvement. My arthritis vanished - what a relief that was. The headaches reduced dramatically too. Over the next couple of months I slowly got better. I was still left with fatigue, brain fog and excessive sleep. I also took a three-month course of Vitaklenz for the gut parasite. This is a blend of antiparasitic herbs. This completely changed my stools into what they used to be like pre 1999. My DHEA and Cortisol levels were low. This rules out depression as a cause of my illness.

In June 2005, I started a regime of 300mg/day Doxy for 5 days of the week and 1200mg Flagyl for 2 days of the week. I take milk thistle, Vit B and C complex, probiotics and live yoghurt, CoEnzyme Q10, Alpha Lypoic Acid, and an Omega Oil blend. I am following Dr Burruscano's protocol for Borreliosis as close as I can. More info can be found at . I went back in November 2005 to see Dr Wright and we are trying another antibiotic (Roxythromycin).

So far, progress has been slow and steady with the odd set back, usually when I try and do too much. I can read and do mental tasks, for an hour or so most days, to my previous ability. I am not in constant pain anymore. I hardly need to take painkillers. Before I was getting thorough the max 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 is still limited. I am doing some voluntary work. I have lost 9lbs in weight, which I think is a sign that my thyroid might be starting to kick in again. I have 70lbs 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 14 hours per day to 10 hours per day. My sleep is usually refreshed too. I can now occasionally go to the gym to lift weights and I use the sauna and hydrotherapy pools, which I find helpful. I have some joint pain and sore tendons. I do not have arthritis anymore. I have more energy and I can sometimes do the housework, do the weekly shop and some walking without too much difficulty. I am yet to get back into aerobic exercise, such as cycling. I had to give up driving for a long time and even now I find this one of the most mentally demanding and tiring things. I can manage about 15 minutes, at most. This small amount has really helped to widen my world.