May is Lyme Disease Awareness month. A year ago, I had never heard of it.
Lyme Disease is one of the most painful, debilitating illnesses and there is no cure.
In the UK, the NHS say there are between 2,000 to 3,000 cases a year. In the USA there are 300,000 new cases reported every year. In Germany there are 250,000 cases. Testing in the UK is inadequate compared to other countries. It is said that over half of NHS negative results are not accurate. Recent data collected by John Caudwell and his team now suggests that there could be as many as 45,000 cases in the UK.
Lyme Disease is a bacterial infection passed on to humans from infected ticks. The ticks are said to mostly come from sheep and deer and thrive in dense vegetation and long grass. They don't jump or fly, but transfer on to you when you brush past them. They are tiny creatures that you may not even notice on you or your pets. They burrow into your skin, suck your blood and pass on the infection. Some people get a bull's-eye rash as a result. Many do not.
Latest research from Germany now indicates that mosquitos can also pass on the infection. Everyone is at risk of this dreadful disease.
You can try to protect yourself by wearing long sleeves and trousers tucked into socks if you are out in nature. Use a good repellent and carry a tick remover with you. There is more advice on the Lyme Disease UK site.
If caught early enough, antibiotic treatment can help to cure. The difficulty is that the symptoms replicate many other things, so it is often missed. It starts with flu like symptoms and fatigue. If it isn't treated, it moves into post infectious or chronic Lyme. There is currently no agreement on the best way to treat people in chronic stage. As with other autoimmune diseases, there is no cure, and currently there is very little research being done to find one.
In chronic stage, those seeking help are often misdiagnosed with things such as fibromyalgia, ME / chronic fatigue, migraine, nerve damage, psychological disorders, depression, MS and other auto immune diseases. Many doctors do not even consider the possibility of testing for Lyme.
I have Chronic Lyme Disease.
It took 10 months for me to be diagnosed. After test after test with my GP and the Hospital for Tropical Diseases, I was diagnosed with a whole list of immune problems, including many of those above. It was only after reading an article on Lyme that I insisted on being tested for it.
My NHS test came back negative so I sent my blood to a German lab for fuller testing and that was when I got a diagnosis.
For some, long-term antibiotics help. For me, and many others, antibiotics make it worse.
Over 18 months my health deteriorated. I have gone from being able to work 10 or 12 hours a day, swimming 50 lengths, taking long walks and enjoying life, to being able to do virtually nothing. Most days, I cannot even leave the house.
Living with Lyme Disease is your worst nightmare. You don't just get Lyme Disease, it comes with many other co-infections as your immune system is depleted to such a level that you are wide open for other illnesses.
Lyme is constant muscle and joint pain. Your legs and arms feel like they are on fire on the inside. You get fever and severe sweating followed by chills that go through your body like an electric shock. Tingling and numbness in your limbs becomes the norm. Severe neck pain means you often can't even lift your head up. Migraine headaches, blurred vision, and arthritic pain in your hands mean you cannot even hold a pen. You wake up several times a night with numbness and the pain. The lack of quality sleep adds to the extreme fatigue. Some days you are literally unable to move or walk. Brain fog leaves you incapable of accessing your brain or being able to concentrate.
As a coach and therapist, I am lucky in that I have the knowledge and tools to stop myself dropping into the depression that so many others suffer with.
Because those of us with Lyme do not have a plaster cast on or some external display of illness, people cannot see the pain and discomfort going on in the inside. Because we still look relatively well, it is difficult for others to understand the level of debilitation.
No one would want to live with Lyme Disease. I would not wish this on anyone.
I am now taking my physical and mental wellbeing forward with a 360 approach to my health. Every day I congratulate myself on what I have been able to achieve. I don't focus on all the things I haven't been able to do. I am using my food and supplements as my medicine and am charting my way back to health in my blog so I can get myself well and also try to help others.
Lyme Disease is not just a minor aliment and it isn't going away. You can help raise awareness by joining the World Wide Lyme Protest. You can share this post so more people know to protect themselves.
We all need better testing, better treatment and more research into finding a cure. There has to be a way out of this dreadful disease for all of the thousands of people who are suffering with it.
Do all you can to help.