What you wish people knew about Lyme disease

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.

4 thoughts on “What you wish people knew about Lyme disease

  1. I wish people in Australia especially the Australian Medical Association, GPs, specialists, would not dismiss the symptoms of those presenting with lyme-like, insect-borne illness and make them feel like they are a ‘basket case’.

  2. I wish people knew that the symptoms can change from month to month, week to week, day to day and even hour to hour. I wish doctors would implement open ended treatment for symptoms that have lasted years and years after. So that relapses are dealt with quickly. Like they would for many other diseases such as syphilis.

  3. I wish people knew
    It breaks my heart when I tell people about Lyme disease and then
    Western medicine alone can’t tackle Lyme disease
    Lyme disease is not one disease, it’s a whole range of different bacteria parasites and viruses
    They have learned to evade our immune systems invading other tissues and all organs in particular the brain
    They have learned to evade the best of western medicines, antibiotics
    Most sufferers have more than one disease
    It is possibly the most complex disease or set of diseases discovered
    It’s not just bacteria, there are many parasites and viruses
    There is no treatment for Lyme Disease sufferers in the UK
    There is currently no cure for Lyme disease Anywhere in the world
    There are different strains of Lyme Disease all over the world
    There is no lyme disease specialist in the UK
    the NHS Lyme Disease training at Medical school is outdated, ignoring decades of research.
    I wish
    only 3% of doctors/GPs have taken the ‘optional’ Lyme Disease training module
    many GPs don’t recognise the symptoms
    most GPs don’t believe chronic Lyme disease exists
    GPs aren’t aware tests are 50% accurate they have 100% confidence in them

  4. The comments above from Jackie Doy above are so,so true
    The New Forest area is alive with ticks, so is my garden. They fall off the deer, rabbits, squirrels and birds into my garden. The dog brings ticks indoors, they drop on the floor, climb on the sofa and onto us. The doctors are totally unprepared to support and advise patients and you cannot claim insurance for any treatment. Clinics take your money but have no skills to cure.
    There are thousands of new sufferers each year, the NHS must wake up to help these people,young and old, a tick respects nobody. This disease is not self inflicted like obesity etc. Research is vital to train doctors and raise awareness

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