Training 1

Hello

So ive been training for the Etape ride since new year, starting small with 20 miles rides with the Ythan club, building up to 40 miles.

Earlier this month I headed out to Deeside and did 60 miles up and over the biggest mountain pass out that way, Cairn O Mount. I managed the 60 miles in 4.5 hrs, so I was fairly happy.

This last weekend I did 78.5 miles from my house to Alford and back via another steep hill, I clocked just under 5 hrs, so really happy also.

So its all looking good, this week will be a quiet one, with a reccy of the 10mile time trial course on wednesday, ready for my first race of the season, man against clock for 10 miles, Im hoping to come in under 30 mins, the winners will be much closer to 20 mins.

What is this all about?

Last spring, my Girlfriend Nicola was bitten by a Tick on the Isle of Rum, Scotland. At the time we didn't think anything of it. As you can read below in Nicola's Story, our world change a lot that day.

Nicola's story is still ongoing I hope to update how the treatment is going as things change. At the time of writing there is at least another month of treatment still pending, beyond that we have yet to see what will follow.

Lyme disease is an increasingly common infection in the UK, the rate of increase is staggering. The potential consequences of untreated Lyme disease can be severe and lead to a significant loss of quality of life.

We have been lucky, we were informed and were able to see beyond the closed minded NHS specialists. We had the resources to find alternative treatments and we have had each other to get through all of the battles and suffering. Many people are not so lucky.

So we come to the cycle part of this, on May 17th, I am riding 81 miles in Perthshire. The ride is the Etape Caledonia (www.etapecaledonia.co.uk). This is the largest closed road cycle ride/race in the UK. 3000 people will take part from those aiming for sub 4hr race times to those in fancy dress.



I am aiming to complete the ride in under 5hrs and am looking for sponsorship to raise money for Lyme Disease Action (http://www.lymediseaseaction.org.uk/).

LDA are "Striving for prevention and treatment of Lyme Disease and associated tick-borne diseases" which is something that needs attention. They rely on the time and generosity of individuals to raise the funds to lobby parliament, health professionals and advise those suffering with tick born ailments.

My aim is to raise £1000 this year for LDA, the first of my events is the Etape Caledonia where I hope to raise at least £500 for LDA.

This blog will detail the fund raising as it progresses ad my preparation for the ride. The next planned event is July-August, I will ride 4 x 25 mile local charity rides in under 90minutes each. The final event planned will be a climb of the Bealach na Ba, Scotland's very own alpine ascent, I plan to cycle this as a conclusion to the fund raising project.

Thanks to all for taking time to read my words Ill post a link to the fund raising page as soon as it is live. Please give anything to LDA that you can spare, if a lot of people give a little, then we can make a difference. I will try to post about how LDA plan to use the money raised.

Nicola's Story

My name is Nicola Seal, I have Lyme disease. This is the story of my illness and the shocking ignorance and attitude of the NHS to this disease.

I am an Ecologist and got Lyme in spring 2008 from a single tick bite on the west coast of Scotland. I have had lots of tick bites before, as an outdoor enthusiast and field worker, it is an occupational hazard. I had heard of Lyme disease but believed it to be a rare and none-too serious disease and I never imagined I could get it.

10 days after the bite, I felt ill at work. I had strangely painful knees, headache, stomach pains, swollen glands, stiff neck, aching muscles and I couldn’t stand the light. I had remembered that Lyme disease goes for the knees and can cause meningitis, so I was a bit suspicious. I went to my GP the next day who didn’t think it was just flu and rang the local hospital who said to come in the next day.

By the time I reached the hospital, my legs had started to buckle underneath me and I couldn’t hold my weight. A lady in the car park had to help me into the building. I saw the doctors in the infection unit and they were so concerned they admitted me immediately. I couldn’t walk, was drenched in sweat, hot and looking very ill. When I told them about the tick bite they suspected Lyme disease in the nervous system (Neuroborreoliosis) and put me on oral antibiotics. They did a lumbar puncture and blood tests but the lumbar puncture showed nothing unusual and the blood tests merely indicated that I had some infection. I was in hospital for 2 nights, during which time, my legs regained some strength, so that I could just about walk if I held onto furniture. I went through several pairs of pyjamas due to the night sweats. I kept the blinds closed as the light hurt my eyes. I more or less insisted that they let me home, no-one likes hospitals. They sent me home with 21 days of 200mg doxycycline, an antibiotic. This dose and duration, I have since found out, is totally inadequate for neuroborreliosis and may have caused the bacteria to form cysts which are then resistant to further antibiotics.

I spent the next 20 days with very weak legs, migrating pain in muscles and joints, continuous headache, rib pain and bad fatigue. I was getting no better. I could not work or even walk round a supermarket. I went back to the hospital, as I realised that I was still quite ill, despite the Doxycycline and had read that this dose and duration was not enough. The registrar told me that I had been given enough antibiotics and I would be fine. I found the number of a Lyme disease specialist and asked the registrar to phone him for advice and to discuss my case. He refused and referred me up to his boss, the consultant. After some discussion, the consultant reluctantly agreed to prescribe a months’ worth of Doxycycline at 400mg.

Symptoms temporarily worsened after 3 days on this dose, but then I slowly improved, my muscle pains, joint pains, headaches and dizziness became less severe and my legs became more stable and I went back to work. I felt so much better, I even went climbing and went for a long weekend away on the west coast. 3 days before the Doxycycline was due to end, I was at work and suddenly relapsed. I had a headache, became very dizzy and the leg weakness returned. I didn’t want to believe it and told myself I was imagining it. I had to accept it was back when I could only limp across the lab.

I rang the hospital and they said to go back in to see them. They admitted me for 5 days and did further tests. These included and MRI scan, a nerve conduction test on my legs, a neurological examination, a lumbar puncture and further blood tests. The MRI scan showed ‘hyperintensities’ in my white matter- which can be indicative of neurological Lyme disease. The nerve conduction test doctor said I had numbness on my thighs which, along with the leg weakness, was consistent with irritation of the nerve root coming from my spine. This is often seen in neurological Lyme disease. The blood tests showed negative for Lyme disease, but I have since found out that they are notoriously unreliable and were not designed to be diagnostic tests. The lumbar puncture was normal, but again, this is often seen in patients who have central nervous system Lyme.

Despite being unable to walk properly, having constant headaches, dizziness, muscle and joint pains and being barely able to get round the shops without collapsing, I was told that essentially, they thought that I was either mad or had post-viral fatigue (they couldn’t quite decide which). They referred me to a psychiatrist. He later came to the conclusion that I had no psychological issues. They took me off the antibiotics and discharged me.

I went downhill fast. My leg weakness worsened to the where I needed to use a stick or hold onto another person to get about. The joint and muscle pains worsened and the headaches, nausea and dizziness became worse. I could no longer stand upright with my feet together without falling over. Most frightening of all, I developed cognitive problems. I nearly ran over a motorcyclist on the way back from a hospital appointment, because I was unable to concentrate for more than a few minutes. I stopped driving. I am normally a near touch typist, but I could only type very slowly, with one or two fingers. I could not keep the thread of a conversation, my attention wandering off all the time, forgetting what I or the other person was saying. I forgot the names for everyday things, a daisy became a ‘white thing’, a satchel became a ‘brown thing’. I became clumsy, dropping things when washing up and knocking things over due to lack of spatial awareness. I had a thick ‘brain fog’ where I could not think clearly and mental processing was slow. I also had dental pain on one side, numbness on my thighs and shins, and severe fatigue. I had gone from being a fit hillwalking, mountain biking, rock climber to having to get a wheelchair through Luton airport because I was unable to make the distance to the gate

I went to see a private Lyme specialist, because I was now convinced there was something seriously wrong with me and thought that maybe I did have Lyme after all. She examined me and took a history and diagnosed me with Neurological Lyme disease. The bug was in my brain after all. She ordered blood tests and told me to come back to have a second opinion with another specialist doctor at her clinic. The blood test came back positive for Lyme. Out of curiosity, I looked at my blood down the microscope at work and found long wiggling filaments that looked a lot like the Lyme bacteria pictures I had seen on the internet. I went to see the second private doctor and he agreed with the first. He saw my ‘Lyme bacteria’ videos and confirmed they did indeed look like Lyme bacteria. Both doctors were concerned at my severely abnormal gait (They took a video of me walking) and prescribed me oral antibiotics. They recommended a 12 week course of intravenous antibiotics (Ceftriaxone), necessary because the oral antibiotics don’t easily get to the brain, where the bacteria now was. As this would be expensive privately, they wrote to my NHS hospital to ask that they provide treatment. Whilst I waited for this decision, the oral antibiotics began to help and some symptoms improved.

After some argument, the NHS consultant agreed to provide 4 weeks of intravenous antibiotics, the maximum which is allowable under NHS guidelines. After a few days the brain fog lifted and I began to be able to think clearly again, which was a huge relief. The other symptoms all slowly improved, and after 4 weeks, I only had a few headaches, a little dizziness and nausea and a small degree of left leg weakness remaining.

The Lyme bacteria is a tough cookie though, and hard to completely eradicate. So to complete the treatment, I took the advice of the private Lyme specialists and commenced a privately funded course of a further 8 weeks intravenous Ceftriaxone, followed by three months oral combination antibiotics. I am hopeful of a cure. Now, at the end of the IV therapy, I still have the leg weakness intermittently, but am much improved and feel thankful that I have been able to afford the expensive private treatment. I have spent nearly £10,000 to date. I am proof that the current NHS guidelines of ‘30 days antibiotics and you’re cured, no matter what’ is wrong. If I had listened to the NHS registrar, I would probably severely (and possibly irreversibly) disabled by now.