It’s been a few weeks since I updated my Blog on the Lyme Disease topic and many of you have been asking me ‘howz it goin’ ?’
I am finally on the antibiotics! Although you may think I am relieved now that I am getting the treatment and that I am near to closing this chapter, I am sadly, far from it.
As you may have read in my previous posts, that a little help with educating my doctor on my part – about Lyme….has finally got me access to medicine BUT it doesn’t end there. My story is no different to someone living in the UK…shouting to be heard and a non literate Lyme doctor knowing absolutely nothing about it…..I am in Madeira where it is supposedly non existent or rare and many feel the same about it in the UK as well.
My second letter to my GP sparked a response and as promised I was referred back to the witch at Marmaleiros. Again I turned up for my early morning appointment and was first to arrive and last to be seen. No blood test for co-infections was forthcoming – another rant from self imposed God witch to a different friend I took this time (whose Portuguese was not as stunning as my first friend’s, in the hope that this woman would actually want to talk to me for a change). The same bizarre appointment as before, whipped in and talked at (in Portuguese) with prescription pad already in hand, writing as she babbled on about how my results were negative and that I was an experiment. Still no consultation (this is a consultant) and dismissed with a “Happy Now?” as the prescription was thrown at me….no opportunity to have a chat..I am still the ‘hot potato’.
We left and headed for the pharmacy cashing in the token gesture to get me fixed. Two weeks supply of Doxycycline, 100mg’s twice a day. I have a follow up appointment on Thursday. You may think I am happy…but in reality and to be honest I am not.
From my own research and going back to what Stella advised from LDA UK patient support…two weeks, Doxycyline at 100mg twice a day may be an appropriate course of action when one has just been bitten, but when one has been bitten a few years ago, this is going to barely touch it. Her recommendation was double that dose at the very least…”Because the bacteria can penetrate the spinal fluid it is important that high enough antibiotic concentrations are reached in the spinal fluid (CSF). Research has shown that doxycycline at 200mg twice a day achieves the necessary levels in the CSF much faster than with the often recommended 100 mg twice per day . This is likely to be important in Lyme Neuroborreliosis and the Swedish hospital conducting the research quoted state “Oral doxycycline treatment (200 mg twice daily) has been the recommended treatment of Lyme neuroborreliosis in adults at this department since 1987”.
So, I am behaving myself and taking my pills as directed by my Madeiran professional who is the doctor and knows better than I do, but I am still frustrated….I have not yet had a consultation with her, she hasn’t asked me a single question about me or my bites or symptoms (and I have been feeling ok this last month incidentally)…I have had no interaction with her other than her lecture about my blood tests being negative and in an unspoken breath how I am wasting her time because of that….I am burning to ask her, why my blood tests show that I am making antibodies for Borrellia…..surely they wouldn’t do that if I didn’t have it and does this in fact mean that everyone makes antibodies…even if they have never been bitten by a Borrelia infected tick?
But I have to remind myself that its not what my blood says…lets go back to the bites again and of course the Em rashes I got – from my garden – in Madeira.
I am rambling and not getting to the point – which is this; within my research I have joined a couple of Lyme groups on facebook. This has been an invaluable source of information and support. I know I am not alone and just because I live in Madeira, I am not an exception…I have got further than many of my fellow infectees in the UK! Although I am dealing with an alienated God complexed medical community, being a foreigner may have somewhat helped…but to what degree…? It seems I am no more worse off than someone who lives in the UK, where supposedly Lyme is more acceptable/or known about…that no matter where you live, it is a problem and one you have to fight to gain recognition of.
So, I have activated a back up plan and one that many who read this might think it a bad idea, but I have done the research and strongly feel that I now have to take my health into my own hands and become a doctor to me. I have been on the low dose of antibiotics for a week now and they are definitely doing something as it has kicked my permanently swollen neck stones into gear and half an hour or so after I take my meds they come alive, by protruding out of my throat, before calming down and reverting back to stones again. Who would have thought that one could be so akin to their lymph nodes under their face…I was jumping for joy when they found life again four days in! My ankles are a bit unsightly as they are puffy as are the backs of my knees and when I walk up the stairs my knees creak more loudly…eating IB like sweets again as the headaches are back, but no nerve twitching last few days or tinnitus, or heart palps. Still very tired (but put that down to a busy few weeks with family)..functioning or firing on all four/three cylinders at the mo (however many we have) not had a bad turn since before I went to Scotland.
As I only got given a 2 week supply of the meds and I need more than that and double the dose, I have acquired some more as back up. My intention on Thursday is to force the witch to actually have a discussion on the topic and get her to let me speak….if that fails I will take this into my own hands and self medicate.
The scary part about all of this is, that I can’t be scathing about the doctors and their lack of knowledge as there are only so many hours in the day and they have so many combinations of health issues with their patients to attend to. I had the time to do the research on this and it has taken not just hours or days, but weeks to truly understand what this illness is about. With doctors and their busy schedules, including the fact that they are human beings too and have a life outside the job, I wonder how they can keep abreast of all the new changes, updates, discoveries in medicine….and all the rest. It must be overwhelming for them at times, when faced with a person like me, who is armed with the latest research and babbles on in their own jargon…quoting stuff off the net and armed with letters and recommendations from a legitimate entity they have never heard of.
And, as a side thought…yes it is easy to become so consumed by the research to the point of obsession and yes I have read many other sufferers who seem to come out with some seriously ridiculous sounding implausibility and tag their symptoms as Lyme based…and yes, mine do seem random and yes, I often think its in my head. But, yes, I do have Lyme…and I am so thankful that my symptoms are no where near as bad as some of my fellow sufferers in the groups that I belong to……and I don’t want to be, which is why I am pushing so hard to knock this on the head and now!
For those of you who are interested, there is a documentary on it which is fascinating to watch…it is based on the US Lyme Disease which attacks the neurological system as they have a different strain of the bacteria than we have in Europe. It’s called “Under our Skin” and can be watched by clicking the link https://www.youtube.com/watch?v=2JgR_Jfbhv8&oref=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3D2JgR_Jfbhv8&has_verified=1