This may be a slightly controversial topic to be writing about, especially about a ‘safe’ holiday destination such as Madeira. But as we all know, diseases and illnesses that were once thought to be only caught in some far off distant and exotic country, is far from the truth now. Two years ago, we were exposed to that new species of mosquito that carried Dengue Fever…..our countries have no borders…Ebola is a more recent and classic example of this.
But let’s get back to Lyme Disease…the disease I am interested in. A disease I am suffering with now. A disease I caught from a tick, in my back garden – which is in Madeira. You may have heard that Lyme Disease does not exist here. It does. My doctor told me this a few weeks ago, then back tracked after speaking to a specialist about my bites and said, ‘It is rare, but we have had a few reported cases recently’.
This is my story. I agonised whether to write it….yet. But I am writing it now, I have not come to a conclusion, and as so much has happened in the last few weeks, feel that now I can’t document this into just one article. I am on a journey and one that many sufferers like me are going on right now or have been on, BUT still have no conclusion.
Lymes is a nasty disease. It has been called the ‘great imitator’ as many people are misdiagnosed. Chronic Fatigue Syndrome, ME, MS, Fibromylagia, Arthritis, and many many more conditions are mimicked by the infection of the Borellia Bacteria. It is hard to find after the initial infection, as it crosses over from the blood to the brain and tissues when left untreated, reaping havoc with the body over time.
There is loads of information on the internet about Lyme Disease and I have exhausted myself with it all. I am not feeling confident right now at being treated for it as I am going through a process of tests and dealing with uninformed medical professionals who are not educated on the subject….maybe because “we don’t have it in Madeira”….
A couple of years ago, I had enjoyed a wonderful summer and spent most of it in my garden. My usual attire in the hot weather, was shorts and flip flops. My garden is slightly different to the normal ‘local’ set up as I don’t grow vegetables….I enjoy flowers, shrubs and lots of colour. I also live next door to a banana plantation. In late July, early August, I noticed a big rash on the back of my leg and a smaller one on my ankle. They were uncomfortable, so I stuck some IB Gel on them to calm the discomfort. I was concerned at first as both rashes grew, I could see a bite (puncture mark at the centre) and as the rashes grew resembling circles of white flesh and angry red rims in a circular form, I started to look up bites on the internet…at the time looking for spider bite rashes.
The rash on the back of my leg covered the entire calf, my ankle was smaller…eventually they bruised at the perimeter and over a few weeks gradually disappeared. I didn’t feel unwell immediately…but from some emails I sent (as I couldn’t remember) I had been moaning about feeling unwell…but I never saw a doctor. At the time I was looking at spider bites and couldn’t find anything that resembled the rashes….I soon forgot about it and got on with my life. I didn’t know about ticks or Lyme Disease or that my rashes were the classic bullseye rash (Erythema Migrans) from an infected tick.
As I said…I got on with my life….and as one who doesn’t go to a doctor unless I am dying….didn’t even go and see a doctor when I started with the early signs of menopause! Over the last couple of years I have had the typical menopausal symptoms of irregular cycles and hot flushes. Anything else I have felt, I blamed on this. I put up with it, made jokes of it and felt that this phase of my life to be very normal.
But….when ones neck glands start to swell up and down like a yoyo, aches and pains that randomly appear and disappear, backs of knees swell up and start to squeak and are painful…..days of brainfog and memory loss…headaches that won’t go with IB and twitching or trembling nerves to list just a few of the weird things that my body has put me through in the last year. That were very mild at first and were blamed on the menopause, but as they became more persistent, I realised that maybe there was something else going wrong. I took to the internet again and in my random searching of the unknown as nothing I had linked to anything specific, I came across a picture of the exact same rashes I had had a few years ago and suddenly realised that I had been barking up the wrong tree…a spider was not the cause but a tick! I read about Lyme Disease, but didn’t really process it.
A couple of months ago, my random and stupid symptoms were getting worse. I had good days mostly, but the bad days were debilitating..and as I live on my own, no one could see it. I was silently suffering (well not really as I moan to friends) but no one sees me…and no one saw that some days I would be struggling to get out of bed, wince in pain with movements and to climb the stairs would be an effort. To get my ‘shit’ together would take days…then on a good day and I would think I had gone crazy as I felt so well, that the previous days and how I felt was stupid…I would then go through a self imposed argument with myself that I had been lazy and procrastinating about everything…and I still am.
Three weeks ago, I had another few bad days….so much so, I got into the car and took myself off to A&E in Ribeira Brava. I had moaned again to a few friends that I felt unwell..but couldn’t really describe the feeling…I was unwell…my body was not normal…and it got so bad I got into the car and didn’t call anyone to come with me. I was diagnosed with Fibromyalgia, given a shot of diclofenac in my bum and sent home with a wad of exivv to take until I saw my GP.
A week later I saw my GP…..one I had registered with in 2013 but never needed to see until now. My first appointment did not go down well, when I mentioned that maybe my random symptoms could be related to my bites and EM rashes and his diagnosis was that I got a psychiatric Evaluation before he wasted time and resources on testing for it.
To cut a very long story short from that episode, a very carefully worded letter on my part was delivered to his office with a copy of some information about Lyme Disease, a study done on ticks and tick borne viruses in Madeira and a picture of my rashes….I was recalled personally by the doc the following day, a call and appointment with an infection specialist at the hospital had been arranged, xrays for my knees, blood tests and a neurologist referral.
I was now being taken seriously and it seemed that I was now heading in the right direction.
How, wrong could I be. That glimmer of hope was smashed with the infections specialist at Marmaleiros hospital……As soon as I sat in the chair, she told my translator “that if I think I have Lyme Disease, I can go home and treat it myself”. I hadn’t even had a consultation……The one and only test they had given me which was a Serology test for Borrelia had come back as negative…my antibody reading was 0.86 but to be a positive you have to be 0.90. I asked why they hadn’t sent my blood for a Western Blot test…which is the test for Lymes….the very unpleasant woman screamed at me, that she would do another…this time it was going to be a PCR test……I won’t go into detail here about that exchange but let’s just say that person has a severe God complex and didn’t like to be challenged…her remark to my friend as we left her office should suffice “trust the doctor to give ME the hot potato” and I am being polite in my translation!
I got 5 more vials of blood extracted from the back of my hand and am now waiting for the results of this test – which I am not pinning my hopes on. Through my research blood work at my stage of time – after the bite and rashes and the time since, this is a futile exercise anyway …Borellia will have crossed over into my tissues and brain..its been too long since I got bitten. And possibly why my ‘menopausal’ symptoms are more than just the menopause!
So, why am I banging on about Lymes? For the purpose of writing this it makes me feel better by writing about it. I live alone and have to deal with my inner demons all the time as I have no one close to share this with. I am aware that what I am going through can be misconstrued at it being something that is ‘in my head’ or I am imagining this…I have too much time to think..and yes, I have also wondered if I have manifested my symptoms to fit! But the reality is this. I got bitten by two ticks and had the classic EM rashes, I felt unwell and didn’t go and see a doctor. I had stage one Lymes Disease. That is fact. Can the human body and its own immune system cope with this by itself and eradicate it on its own? I have researched and the answer is NO. Do you have to be ill straight away? No. Can it present symptoms, months or years later if not treated at the time of infection? YES Is this what is happening to me now? Yes I am sure it is!
I’ve had more symptoms than I have mentioned in this article. I am astounded at the lack of diagnosis for people who are still suffering with Lyme Disease who cannot get a doctor to treat them for it..and this is in the UK. What hope do I have on an island that doesn’t think it exists?
I will be writing more about this subject and my journey as it happens. I just hope that no one here has to go through what I am going through..its unpleasant, frustrating and a subject that is brushed off into the wind. Awareness will help, but not solve the problem. My health is important to me, and I hope that I can find somewhere where I can go to for this, if its not be given in the place that I live!
Prevention for ticks:
When Levada or mountain walking, make sure you cover up and check yourself for ticks afterwards. Ticks lurk underneath foliage and will attach themselves to clothing and look for a suitable host to feed off.
Don’t panic if you get bitten. Ticks need time to feed….so quick removal is best. The longer the tick feeds the more chance you have of being infected with a tick borne virus. Look for the EM (bullseye rash) and seek medical advice if you do. (note: not everyone gets the rash)!
And yes the doctor is partially correct when he say’s it’s rare (and totally wrong when he said it doesn’t exist in Madeira)…not all ticks carry Borrelia. The Bacteria comes from rats…..so the chances of getting Lymes from a bite in the mountains is less likely than from your own back yard!
Update: For more information, I published this on my Madeira Active Network. To read the discussions on this subject or to add your own, please visit http://madeira-active.network-maker.com/ sign up, it’s free!