Hi I’m Sophia, I’m 27 and I have chronic Lyme Disease. Lyme Disease has left me very debilitated and mostly housebound. I haven’t been able to work in over 2 years and I have no social life or independence. When I do go out I have to use a wheelchair. Despite my illness, I am a keen baker and a health and food blogger. I live in beautiful Cornwall with my boyfriend and I enjoy nothing more than little trips to the beach; feeling the sea air on my face and watching my little dog run around!
I have written this piece to help you understand more about Lyme Disease as it is so under recognised and misunderstood, and also to let you know the ways on which you can help to raise awareness!
What is Lyme Disease?
Lyme Disease is a bacterial infection, usually transmitted by a tick (but other insects and biting flies can carry the disease, and other infections can be transferred with the initial bite). It is the most common human tick-borne infectious disease in the northern hemisphere. Symptoms sometimes start with the characteristic bull’s eye rash, but up to 60% of people do not get a rash. I was one of those people. Initial signs include flu-like symptoms, fever, muscle pain, light and sound sensitivity, stiff neck and fatigue. Left untreated, the infection can spread anywhere in the body, leading to many more symptoms and often neurological problems. Late or chronic symptoms include joint pain, peripheral neuropathy, paralysis of facial muscles (Bell’s palsy), cognitive problems such as memory issues, word finding difficulties and ‘brain fog’, headaches/migraines, heart problems, insomnia, extreme fatigue, autonomic nervous system dysfunction, dizziness and anxiety and depression.The symptoms produced in a person infected with Lyme Disease are some the most strange, bizarre, and unusual. No ailment could ever prepare someone for the nature of symptoms they’ll experience with Lyme Disease.
Lyme Disease is called ‘the great imitator’ as the symptoms of Lyme overlap with lots of other chronic illnesses. It imitates chronic fatigue syndrome/ME, multiple sclerosis, Alzheimer’s, fibromyalgia, ALS, epstein barr virus, schizophrenia and hypothyroidism, to name a few. It isn’t in any way uncommon for a person to be diagnosed with one of the above mentioned disorders, only to later find out that their symptoms were actually instead caused by Lyme.
Testing methods in the UK are unreliable (I believe they can miss up to 60% of cases) and treatment is often limited to just a few weeks of one single antibiotic if you are lucky enough to get a positive test result and have a Lyme sympathetic doctor. If the disease has become chronic (i.e. you have had it for more than a few months) this length and simplicity of treatment would not rid your body of the disease. Expecting a few weeks of antibiotics to heal a person of chronic Lyme Disease is like using a mouse trap to kill a polar bear. The chronic form of infection is disputed among medical professionals here – most denying its existence. Many patients, frustrated by the lack of care they receive from the NHS, turn to private doctors and clinics and undergo testing by foreign laboratories whose results are not accepted by the NHS.
“Expecting a few weeks of antibiotics to heal a person of chronic Lyme Disease is like using a mouse trap to kill a polar bear.”
Lyme is very complex to treat – the bacteria are spiral shaped so that when they enter the body, they can drill themselves into pretty much everything – this includes muscle, collagen, organs (specifically the heart), nerves, and even bone. Killing the bacteria will take a lot of time, energy, effort, patience, and a good treatment protocol. Recommended treatment protocols for chronic Lyme would include multiple antibiotics and/or strong antimicrobials as well as immune support, good detoxification and effective supplements.
Lyme Prevention Tips
Here are some simple things you and your family can do to reduce the chances of contracting Lyme from tick and insect bites…
- When out walking, avoid long grass, stick to mapped out paths, and tuck your trousers into your socks. Also wear long sleeved tops if you can.
- Regularly check yourself and your family for ticks, making sure to look in the armpits, backs of the knees, groin areas and scalp.
- Carry a tick removal tool with you at all times.
- Use a tick, mosquito and other biting insects repellent before outdoor activities
- If you see an embedded tick, remove it as quickly as possible using the correct tick removal technique.
- If you start to feel a bit unwell or notice a rash, see your GP immediately and mention your concerns about Lyme disease.
How can you help to raise awareness?
There are lots of ways that you can help to raise awareness of Lyme Disease! Every action makes a difference, no matter how small. Help me spread awareness of this prolific, debilitating, and often misdiagnosed disease with a tiny amount of your time.
Take part in the Lyme Disease Challenge
The “Take a Bite Out of Lyme Disease” Challenge is both fun AND important. There are three easy steps to the challenge – bite a lime and take a photo/video of you doing it, post the photo/video to social media using the hashtag #LymeDiseaseChallenge along with a short fact about Lyme disease, and make a donation. To find out more about the challenge check out my blog post.
Tell your story
If you have Lyme Disease or have a family/friend who does, why not share your story (if you feel comfortable with doing that of course). Write a blog post and share it across social media or you could also contact your local paper or a magazine and get them to share it too.
Share info on social media
Share the facts that you know about Lyme or retweet/share on FB what others are saying about it. Lyme Disease UK on Facebook and twitter are good resources.
Talk to friends/family
I bet a lot of your family and friends know very little about Lyme, some may never have heard of it before. Talk to them about what know about it, educate them and tell them to tell others about it too.
Take leaflets to your local GP surgery
Print off leaflets and posters here and take them into anywhere you feel necessary – your local GP surgery, local vets, camping sites etc.
Suggest your GP goes to a conference or training
There is an on October 1st this year that the charity Vis-a-Vis Symposiums is hosting. Please encourage your doctors to attend. There are some really excellent speakers. Click here for more information.
I hope this has helped you gain some insight into Lyme Disease and what you can do to help 🙂
Find out more about Sophia on her blog: Spoonie Sophia