Living with Lyme Disease
One day things are ‘normal’. The next your whole world turns upside down.
Living with Lyme Disease has been the most painful and debilitating experience of my entire life.
It starts off with flu like symptoms, extreme fatigue, fever and chills. It then progresses to constant muscle and joint pain and a whole range of other problems that rampage through your body like an army that no one was expecting. As your immune system scrambles to attempt a defence, the bacteria and its co-infections have already caused mayhem.
If you get bitten and have the ‘bulls eye’ rash, an immediate course of antibiotics can cure it. If you don’t get the rash (which many people don’t) and you don’t realise you have been bitten, people typically think they have just picked up a flu bug. Fever and chills then partner extreme fatigue. As the bacteria spreads through your system, overtime it can reach your liver, thyroid, brain and heart – all causing untold damage to your body.
With constant pain that is excruciating when you try to move or walk, you get stiffness in your neck that makes holding your head up an impossible task. Chronic fatigue, numbness, migraine headaches, sensitivity to light, heart palpitations, blurred vision, brain fog, short-term memory problems, sleep disturbance and depression, all compound to make every minute of every day a challenge.
I became ill after picking up parasites in my gut when on a charity trip to South Africa. The parasites triggered off extreme illness with what was already sitting in my system. I was bitten several times whilst over there and have been bitten many times in previous years when out walking, which has resulted in bouts of ill- health. Whether I contracted it in South Africa or from walking holidays in the UK or elsewhere, I cannot say for certain. I have had redness around bites but had no idea what Lyme Disease was until two years ago, so I didn’t know what to look for.
The last two and a half years have far exceeded any level of ill-health I have experienced before. I went from being able to work 12 hour days, to walk for hours and exercise freely, to barely being able to walk or get out of bed. I have been unable to work throughout that time, having completely lost access to my brain. My brain became like a distant land that I knew was there, but the drawbridge had been pulled up. With zero ability to concentrate and constructing even the simplest of sentences becoming a major problem, all I could do was find a way to deal with what was happening to me.
It took nearly 10 months for me to get a diagnosis. After months of tests through my GP and the Hospital for Tropical Diseases, I still had no answers. I was admitted to hospital after my legs went completely numb. The neurologist diagnosed me with Central Sensitivity Syndrome, Chronic Fatigue / ME, migraines, fibromyalgia and IBS. A list of autoimmune diseases that have no cure.
After reading an article on Lyme in a magazine, I recognised all of my symptoms and asked to be tested for it. My NHS test was done at a local hospital rather than a specialist lab and came back negative. After reading that over 50% of negative tests are incorrect, I sent my blood to Germany and got my Lyme results together with a list of other co-infections. Even today, some doctors stick with the Neurology list and decline to consider Lyme Disease. Others have recognised the results and tried to help me. Regardless of the ‘label’ I just wanted to get well.
I have sought help from a private specialist doctor and nutritionist. Together with more test results, the help and advice has been beneficial.
Long-term antibiotics are offered and taken by many out of desperation to get well. Taking those for long periods however, can deplete your system and gut health and cause longer-term issues. After two and a half months I stopped taking them and have been taking a 360 approach to my health and wellbeing ever since.
As with all autoimmune diseases, there is no cure. Painkillers and anti-depressants are on offer in abundance.
Using my food as medicine, I don’t eat meat, gluten or have caffeine. I have cut out dairy, nightshade vegetables, which cause inflammation and am on low sugar. I eat some wild fish and have plenty of vegetables, fruit, nuts and berries. Basically, I am on an anti-inflammatory diet and I take a number of vitamins and supplements to support my compromised immune system.
Every day I write down everything that I do and eat. In doing that I have worked out what foods help and what contributes to my symptoms worsening. I have set myself goals and each week I have gradually increased how many steps I can do in a day and how long I can concentrate for. It is a slow process but slowly I am improving.
In my experience with this dreadful disease, no one offers help with your mental health. Living long term with constant pain and debilitation sends many people into the depths of depression. I am fortunate in my training, that I know how to keep myself mentally resilient, although I have hit very low points.
Every day I concentrate on what I can achieve, rather than all the things that I can’t do. I have regular acupuncture, I meditate and do simple yoga stretches daily. No matter how much pain I am in I make myself move each day so I can keep my endocrine system working to clear toxins and to keep my oxygen flowing to help my muscles and concentration. I know if I don’t move, tomorrow will be even worse.
In following my routine, I am gradually returning to health.
More needs to be done to get better testing in the UK and research in to treatments and a cure. I would not wish anyone to have to endure this awful disease so please be aware and protect yourself.
If out walking, use repellent, wear long trousers tucked into socks and long sleeved shirts. Ticks transfer from animals onto grass and undergrowth and attach onto you when you brush past. If you have a tick, remove it as close to your skin as possible with tweezers. Mosquitos can also carry the bacteria. Look for bite marks, and remember a course of antibiotics at the initial stage can save you from years of ill health.