What is Lyme Disease & How is it Diagnosed?

This post, again, is originally from 2015 but since I discussed Chronic Fatigue Syndrome (CFS) the other day I would post about one of the illnesses that can cause this condition & the cause my own CFS, Lyme Disease. I’ll only give a brief summary today of the disease & it’s diagnosis becuase it’s such a vast topic & I don’t want to bog you down with too much science!

Lyme, a bacterial disease spread by black ticks, is the most commonly spread disease by ticks in the northern hemisphere. It’s a truly devastating disease with a multitude of symptoms, including CFS, Bell’s Palsy (facial paralysis) & schizophrenia.

Lyme bacteria spreads slowly throughout your body, infecting all bodily tissue & can ultimately lead to your organs shutting down. I don’t know if my organs are permanently damaged from the disease, I hope not, but this under-researched disease shouldn’t be underestimated.

Anyone can be at risk of the disease, although the risk is higher if you live in the countryside or have pets. The ticks carrying the disease are usually associated with deer, as they feeding off their blood, which means anywhere deer live there is sure to be Lyme Disease. Richmond Park in London is a good example, it’s home to lot’s of deer & known to have Lyme Disease, so even if you live in a city you’re still at risk.

Lyme Disease was first identified in the USA where it’s widely known & recognised, & many people I’ve spoken to about my illness  thought you could only catch it in America! Unfortunately it’s not as well-known in the UK & most people don’t realise they are at risk in Britain, (but this is changing with more coverage since 2015).  I contracted the disease in Britain, more specifically Dartmoor, or at least we suspect I did as we visited a farm there around the time my issues started, but I’ve also found people who caught it locally where I grew up in Warwickshire, so who knows! However the consultant only thought Lyme Disease a possibility when I mentioned my uncle lives in Germany (where the disease is more prevalent & widely known), showing that even the doctors who will look at all the options won’t always think of Lyme Disease unless you’ve been abroad!

This is one of the biggest issues with Lyme, it’s extremely difficult to diagnose as the symptoms patients suffer from are often typical CFS symptoms, tiredness, brain fog, dizziness, fever, aching muscles & joints, to name a few, meaning there aren’t really any obvious red flags for doctors to realise their patient has Lyme Disease. One obvious sign some people do get is a ‘bulls-eye rash’, which looks as you can imagine a bulls-eye (a red centre surrounded by white which is surrounded by red, in some cases even still containing a black tick at the centre), but this does disappear! The thinking now is that as not everyone gets this reaction (I certainly didn’t unless it was in my hair), that the rash might only appear if you’ve been infected before, a sign your body’s antibodies recognise the bacteria. However even if you do have this rash many GP’s simply don’t know what it is! One person I spoke to, who had a rash, only knew what it was when they saw a dermatologist who knew what it might be.

So the chances of getting diagnosed isn’t promising & doctors need to become more aware of the illness, & the possibility that those with CFS & other unexplained illness could be infected. Unfortunately this lack of knowledge means it’s often up to you to identify Lyme as a possible underlying cause of your illness.  I was lucky & went to a hospital where a specialist holistic doctor was determined to get to the bottom of my CFS. Amazingly once we discovered it was Lyme Disease I also discovered that my doctor was a specialist in Lyme medicine too, but don’t worry you if you haven’t got a specialist, you don’t need one to get well, you just need the right guidance & medical information.

Once the doctor suspected I had Lyme Disease she wanted to confirm it before starting any treatment, but that proved just as difficult as identifying Lyme in the first place! My Lyme had become chronic, which means your body isn’t actively fighting it anymore so there aren’t many clues it’s still in your body & is much more difficult to diagnose. One problem is the tests used to diagnose are blood tests, & Lyme bacteria doesn’t live in your blood it lives in your tissue, so the first blood test I did, which was sent to Germany, came back negative. Second time around we were determined to find a diagnosis & my doctor put me on a course of antibiotics (doxycycline) for a week or two to try & kill some of the bacteria hiding-out in my body, because when it dies that’s when it goes into your bloodstream making it detectable! The second blood test was sent to the USA, which was supposed to be more reliable, & as a result of our efforts it finally came back positive! So using antibiotics is something to discuss with your doctor if you are trying to get a positive diagnosis.

Remember, Lyme Disease is a serious illness & if you think it could be the cause of your ill health, don’t delay in seeking a diagnosis, go to your doctor ASAP, the longer you leave it the worse it gets & the harder it is to treat!

Remember, with a hard to diagnose illness it can be a struggle to even convince your doctor that it’s even a possibility, so be prepared and go with evidence. It’s unlikely your doctor will know much about the condition so tell them your symptoms, highlight which ones match, & let them know if you’ve been anywhere where you could have contracted it, they want to be respected enough to draw their own conclusions. I know this takes courage, especially if you have been to the doctor countless times before & been dismissed, but you can do it & if you’re polite & rationally explain they shouldn’t undermine your concerns. If they aren’t helpful, as I said in my Understanding Chronic Fatigue Syndrome & ME post, you can change your doctor, but you need to realise you could just get the same response again. But don’t despair there are ways to treat the disease without the help of a doctor & if you can’t find a helpful one this might be your only route to health.

I know if you have been chronically ill for a long time, with no hope of an answer it’s easy to start dismissing illnesses, but if you are truly going to get better you need to consider all the options with an open mind. It can be so much easier to give up the fight, but it takes real strength & courage to continue the battle when you think all hope is lost, I know you still have a warrior within you, so don’t give up now!

I hope you found this helpful, I will fill you in on what you can do to treat your Lyme Disease and I how I treated mine in upcoming posts, but let me know if Lyme Disease could be a concern for you & if you’ve managed to find the help & support you need,

Wishing you the best of health

Louise x


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