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So, here we are again….another instalment over my personal saga with the dreaded Lyme word. I am sick of it. My doctor called me this morning, which was the result of another letter I sent him…after the last consultation where he probed about the state of my mind again, hinting that a bit of counselling might help!

I am fed up with hearing that Lyme is rare in Madeira, it’s almost as if I have forced it upon myself and that one rat in millions chanced a tick and that tick bit me. I found a scientific report that did a study on ticks in 1994 the conclusion of this study was this: “Because I. ricinus ticks frequently attack people on Madeira Island, Lyme disease should be considered as a cause of locally acquired human illness.” This was a study done some 20 years ago; ‘Rats appear to be the main reservoir hosts of the agent of Lyme disease on Madeira Island, and cattle and sheep serve as definitive hosts of the vector tick’. So, 20 years later, Lyme disease is still supposed to be rare and I am treated as if I am stupid and that it couldn’t possibly happen to me. (full article here http://www.ncbi.nlm.nih.gov/pubmed/8066380)

In my last blog about this, I had been to see an Infections Specialist up at Marmaleiros hospital. That appointment was so ghastly with an incredibly rude doctor, that when I saw my GP for a follow up, we discussed the need to go back for the second appointment. My PCR test had already come back and as I expected the result was negative. I knew that to go back would be a waste of time..the negative result ensured this and he agreed.

In between all of this, I had been in contact with the Patient support team at Lyme Disease Action UK…I sent them an email including my time line, description of my bites and EM rashes and a brief synopsis of my symptoms. I asked 4 key questions and the reply back was encouraging..this is what was said:

To answer your specific questions –
1) If you get bitten and present the EM rash…is it definite that you have been infected with Borelia and that you have stage one Lymes Disease?
There are very few rashes that cause an even spreading redness clearing in the centre. If you had this, then it is caused by Lyme disease.
2) Given the above, can your immune system fight off the bacteria successfully and recover fully from it?
Yes; like any other disease your immune system can fight off the Lyme disease infection. It is more difficult because the tick injects immune suppressants into your blood allowing the bacteria a chance to multiply before they go further on.3) If the answer is no to question 2 – Is there a reliable test, given the time length since the infection?
There is no test which can guarantee to rule out Lyme disease. There are some well documented reasons for negative tests in people who do have the disease. Read the article in our Newsletter from January 2015.

4) In your opinion, what should I do in response to my doctor dismissing this situation…where else can I get help?
I suggest hat you discuss with your GP, and try to do this at a time when you have objective symptoms that can be seen or felt – eg swollen glands. Lyme disease symptoms overlap with those of many other conditions and diseases and this does genuinely make it difficult for doctors. Although there is no excuse for her behaviour, your ID doctor may never have come across a case of Lyme disease before and may therefore be on the defensive, and very much relying on a test result.Your infectious.

Sometimes, if the evidence is strong enough despite a negative test result, a GP may feel able to prescribe some antibiotics. It is a question of balancing the harm of treating someone if they don’t have the disease versus the harm of not treating them if they do. This is worth a try, as GPs can sometimes be much more pragmatic. So perhaps see if you can cultivate the relationship with your local doctor, present the information above and say that you can now see how difficult it is, but given your symptoms, would a course of doxycycline be sensible?

So, with a few more emails and some great advice imparted to me from LDA UK, I contacted my doctor by letter (last appointment he made it clear that this was the end of the matter, results were negative, I don’t have the disease now……now let’s look again to see if you need to go to the funny farm)! LDA UK also sent me a ton of info supporting the reason why I had a negative test. Information about treatment and the reasons why…try to convince your doctor, work with him, educate him!
This made sense and renewed some hope after feeling that there was none left after my last appointment. I was confused as to my negative result and angry that the antibody test to Borellia was 0.86, but to be a positive it had to be a 0.90….that surely if I had antibodies to start with, didn’t that mean anything? The second blood test that came back, my antibody reading was lower than the week before and LDA UK’s analogy of looking for a needle in a haystack started to make sense. I collated the info they sent me and spent the entire weekend, printing it off and writing a covering letter back to the doctor with copies of the files…and then I finished it off with my own summary, rather like a lawyer would before the jury would deliberate at trial. This is my statement;

My comments and reasons why I think I should be treated for Lyme Disease

 

Fact: I was bitten twice by ticks and presented two EM rashes – ankle and calf

I did feel ill after the bites (emails I sent to friends and family refer to me complaining about it, this was a few weeks after the bites). Although I didn’t take a photograph or see a doctor, I did show my family and a few friends. They are prepared to back me up on this if there is any further doubt! I know I got my bites from being in my garden as I spent a lot of time in it. I grow shrubs, flowers and a lot of ground covering plants. My garden wall separates my flower garden from a large banana plantation next door. We have an abundance of feral cats in the neighbourhood (I feed 4 of them) and I regularly treat my two dogs with Advantix to keep the parasites at bay.

Given that the study of ticks and Borrelia is derived from rats in Madeira (see attached paper on this) it would not be unreasonable to assume that living next door to a banana plantation and gardening in shorts and flip flops , would indeed be an ideal breeding ground and ideal host given the attire. Furthermore, as it is rare, it is not impossible. I can now see why the local agricultural workers in my area wear wellington boots, with their trousers tucked in and long sleeve shirts in the hottest of weather, maybe they are already aware of the risk!

I have been premenopausal for the last 2 years and attributed some of the small things that were not right with my body with that. I researched menopause and inadvertently stumbled across pictures of EM rashes and read up a little on Lyme disease, but as I was looking at symptoms relating to menopause, didn’t connect the dots with Lyme until the symptoms started to become more noticeable and more frequent than before.  I still didn’t see a doctor over this as I wasn’t sure that they were related.

As you know, I booked an appointment to see you in early March (had to wait just over 2 weeks from booking it to having the appointment) during that time, I was again feeling really unwell as well as aches and pains and in the end I drove myself to A&E in Ribeira Brava. They told me I had Fibromyalgia and treated me for that. When I did see you and we got off to a bad start – which I am so pleased we were able to resolve, you sent me for tests and xrays of my knees…another problem that had been getting worse and one that was getting worse quite quickly!

We discussed the possibility that my other symptoms could be Lyme related and you did send me to a specialist and gave me blood tests. At this stage I really started to research Lyme disease more thoroughly as I wanted to be more informed about it as we were looking into it. A lot of my symptoms overlap a myriad of symptoms that Lyme Disease can present and I am thank ful that I don’t have all of them….or yet! As you will discover it is called the great imitator and that one of the first signs of going into chronic Lyme is arthritis in the knees! I am experiencing nerve problems with the random twitching, weakness in my arms, dead or numb toes….headaches that refuse to go, even with ibuprofen and I am getting irritated with my frequent forgetfulness of the simplest of things. Back ache, muscle aches, stabbing pains in my head. Constantly feeling tired, days where everything is an effort to do, feeling unwell and I have to mentally push myself! Not to mention my swollen necks glands that make me look like a turkey ready for slaughter! This week I have had short episodes of tinnitus, which start as suddenly as it stops…this is very irritating also. White irritates my vision, floaters. I’ve had a few dizzy feelings when sitting, this was something I had last year, then went away.

Then I have good days too, and I feel fine, even my knees don’t hurt on a good day! Today, I feel well.

Of course I read the above and all of it is so random and doesn’t make sense, so, do I have something neurological going on and need to see a neurologist … do the aches and pains mean I need to see a rheumatologist….do I need to see a shrink because this is all psychosomatic and I am making myself think I am ill?

Let’s go back to Lyme Disease then and take a look at what that does when it starts to invade the body which can be months or even years after being bitten by an infected tick…..that makes a lot more sense to me and my symptoms don’t look so baffling either – let’s look at my knees for an example, could the quick degradation to them not be related and suggest that I am in the early stages of the chronic form of the disease?

Stella in her letter has explained why the Blood tests are inconclusive and should not be taken as a firm diagnosis that I don’t have the disease just because they came back negative. That taking the blood is like looking for a needle in a haystack – and if you go back to my 2 Serology tests that were done within a week of each other and look at the different IGg and IGm on both tests the numbers don’t match, which suggests that she is right with her analogy of the needle and haystack. A PCR test looks for bacteria DNA…if taking blood and the bacteria has passed into my tissues, then testing blood for this would surely be the same as the reason for the Serology test. If you really dig deep, there is no blood test that is conclusive and that is probably why so many other people around the world are misdiagnosed with this disease.

Stella’s recommendation was to try and work with you on this topic and this is why I have sent you another letter and all the material attached. In her argument at the end of the first letter “It is a question of balancing the harm of treating someone who doesn’t have the disease versus the harm of not treating them if they do” and “but given your symptoms would a course of Doxycycline  be sensible?” I would add another argument;  that would it not be cheaper on the over worked resources of the medical profession in Madeira to try this approach first before sending me off to a neurologist or any other specialist in the hope of finding what is the cause, when it could be this?

And then, let’s go right back to the beginning again, I had 2  tick bites and 2 EM rashes and I never saw a doctor and as a consequence contracted 1st stage Lyme disease. This was not treated and at that time if I HAD gone to a doctor and received treatment for it, I would not be here now. As Stella says  “like any other disease your immune system can fight off the Lyme disease infection. It is more difficult because the tick injects immune suppressants into your blood allowing the bacteria a chance to multiply before they go further on.” And in a later communication “Given that you had EM rashes, you had Lyme disease once. There is no test of cure, but you have symptoms as evidence of a problem. If he is short of resources, it is much simpler to give you a course of doxycycline than to persist with multiple visits and referrals.”

If we look at the information I have sent you regarding the top ten tips to prevent Chronic Lyme Disease which was written by the International Lyme and Associated Diseases Society and look at numbers 5 & 6 and more importantly no 7 ‘The wait and see approach to treatment maybe risky’. And also the ‘What is Lyme Disease’ Fact sheet where it says “that if the bacteria persists OR was never treated in the first place, the clinical picture becomes far more complicated and patients need long term treatment” you can then understand why I am not letting this idea of my bites and rashes, the knowledge that I did have stage one Lyme Disease and no treatment for that, could be the reason for my sets of bizarre symptoms I am suffering with now.

If in the end I do have to look somewhere else, whether it be in the UK or a different doctor here, you are my GP and for future problems it would be much better for us both if you were the one in charge of a treatment regime if you were to agree to one. If I seek treatment elsewhere, you would not have that medical history and should I have health problems in the future this could become a problem.  Moreover, I could seek help elsewhere and need more treatment here, how would you be able to assist if indeed that became a scenario?

I am very concerned that if this is left, my symptoms will gradually get worse. I value the quality of life I have very much and do not look forward to having future health problems if this is not resolved.

I would also like to point out again, that my research, contact and subsequent communications with Lyme Disease Action UK is not a reflection or an indication that I have no belief in you as my doctor. I would like you to think that I am assisting you with my problem and I hope that together, we can resolve it.

Thank you in advance for taking your time in reading all of this and digesting the information I have sent.  ”

I popped the envelope with said contents in yesterday to the receptionist. At 10am this morning the doctor was calling me personally on the phone. He was, let’s say irritated and less choosy with his words. I had yet again become ‘the hot potato’ and I was not going away. He told me that he researched the disease more thoroughly and agreed that indeed I should have treatment for it BUT as he was not familiar with the disease, he did not want to undertake this by himself. He had rung the hospital and discussed it with them again and as a result they now want me to go in for more tests, this time for co -infections, as Lymes is still rare in Madeira! He waffled on about the different antibiotics that would be needed in order to treat ‘the problem’ and as such I am now being referred back to the bloody awful specialist again. His last words to me were, can’t you get a second opinion in the UK, to put your mind at rest? Had I not taken that call whilst in the waiting room at the clinic waiting for my ECG appointment…I would have conceded there and then. But the receptionists overheard my conversation with him and quizzed me about it after.

“Oh dear, you poor thing, you have that doctor!” and ” he has a dreadful reputation, he thinks everyone is crazy when they are truly ill” and ” he told my dad at 60 he was too old to drive, but that old fart is nearly 70 and is still driving” and “insist on changing your doctor, he is no good, go see this one, that one” It did not instil a vote of confidence on my part, having felt that the fact that he rang me himself was a breakthrough in the Madeiran ways of the medical world. Now I saw that by my challenging him, he could not wait to palm me off to someone else and to the worst doctor of all, back up at Marmaleiros. They call it Karma…but I don’t give a shit…this is my body, my health that they are playing with and I am going to make sure that I am as informed about this as I can, before I get fobbed off or prescribed anything.

I just find it incredulous that the attitude of something that is supposedly rare means you are barking mad if you think you have this rare disease. And it really makes me wonder how many people are walking around with it in Madeira who are being treated for other things that this disease imitates. If the locals over dress in summer, as they always do, they know something. They work the land and live with the insects and pests and protect themselves against the dangers.

And if the scientific study done 20 years ago, which I found on the internet summarises at the end with “Because I. ricinus ticks frequently attack people on Madeira Island, Lyme disease should be considered as a cause of locally acquired human illness.” and now only 2 years ago, mosquitoes have brought Dengue to Madeira, isn’t it about time folks that the medical community wake up and accept that these things may have been rare once upon a time, but now are just as much a threat today as Ebola is in Africa.

Next instalment will probably be a rant.. I now have to face the evil witch at Marmaleiros!

As this is something close to my heart (understandably) I will be undertaking some fund raising for the wonderful association that have helped me so far (Lyme Disease Action UK) although I am out of their remit, patient support (Stella) has been a fantastic source of good sound advice, information and support, particularly at the time when the door for help from my own doctor had been firmly slammed shut. She assisted with the process here and I am very grateful. Had it not been for this charity I would have had no help whatsoever. If you read this and feel akin to donating to a worthy cause, then please do consider them…here is the link to donate or surf their website with information about Lyme Disease http://www.lymediseaseaction.org.uk/what-you-can-do/donation/

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