There can be a lot of misunderstanding around Lyme disease – such as what it is, and how it affects people, both in the short and long term.
We recently asked our social media followers what they wish other people knew about Lyme disease, and we got a wide range of responses.
Some wished for better understanding of how people suffer. Some issued warnings of what they feel people should know when it comes to treatment. And some gave out tips, or spread messages of hope.
Here are some of the answers we got:
I wish people knew it was easy to contract!
That it’s an incredibly lonely and debilitating disease, with new strange symptoms occurring all the time so that others (including doctors) often believe that you’re making it up!
That I’m not lazy! I only have a certain amount of energy every day and it’s hard to ration it.
That often one course of antibiotics does not work and another course is needed. If you are still symptomatic after a course do not agree to a watch and wait strategy of several weeks, another course of antibiotics should follow immediately.
Keep a record of symptoms and dates and all conversations that you have with doctors.
That it could happen to anyone.
Make sure you finish the course of antibiotics even though they make you feel awful & no dairy products with doxycycline as it reduces its effectiveness.
Lyme can cause damage to the body that takes a long time to heal.
There is enormous misinformation circulating around the disease and it’s more harmful than portrayed in the media.
That there are no NHS Lyme specialists in the UK.
Many Lyme sufferers are diagnosed with unexplained illnesses like M.E., C.F.S or fibromyalgia.
Many people have to pay for private testing, and many people that are not caught early find themselves paying thousands of pounds for testing abroad and treatment.
Better gut health helps combat the disease so take probiotics, drink Kombucha tea with live cultures, maximise on fruit & veg and use quality essential oils inside and out to alleviate symptoms, inflammation and pain relief. Ice packs and peppermint oil really do help with nerve pain and be brave, you can beat this.
What do you wish people knew about Lyme disease?
Comment and tell us your thoughts on what you wish people knew.
These comments were written by our social media followers and are not necessarily representative of the charity’s thoughts and recommendations.