Saturday, 3 November 2012

Decisions, decisions!

IF I have blood tests performed by a German lab which specialises in Lyme Disease and its many co-infections (the best specialist lab for LD in Europe apparently), it will cost more than £1000 but the problem is that the UK NHS will not recognise the results even if found positive! UK tests are weak and unreliable, notoriously so. Even the manufacturers of UK tests warn that they throw up false negatives as well as false positives! But UK NHS would not treat me if German lab finds Lyme Disease and co-infections! So would then have to go to Germany for two weeks at a clinic which can begin treatment (staying in an apartment) which would cost at least £5000 in total. They then send you home with the meds which have to be given intravenously which means hiring a nurse to administer them from a private nursing agency - more expense. Then I would have to go back to Germany for a weeks review every few month and the treatment could take anything from six months to several years - imagine the costs if I made the decision to try this? All this and I should be able to be treated in my own country but to get treatment I would have to have a positive result from one of the lousy UK tests and thats so unlikely to happen even if I do have it!
It infuriates me that the antibiotics required actually would not cost the NHS very much at all as they are cheap drugs! But if they make positive diagnoses you see, they then have to admit that Lyme Disease does exist beyond a few weeks! Then that could affect the tourist trade and cause all sorts of political arguments! So, people like me have to suffer or spend what little we have trying to get better! I have been left so long now anyway that a cure is not certain and could take years to achieve, only to have the LD symptoms either return later or to be left with residual symptoms such as arthritis or heart problems etc etc!
Yes, we invested most of OH's redundancy but why should we have to spend it on what could be a futile attempt to get me better? Oh and I am sorry but please, nobody come at me with links to quack cures or websites of people who claim they can cure it with thinking therapies etc because they are bullsh*t, especially where an infection like LD is concerned! I am on relevant supplements, I do take painkillers only when necessary and I am grateful that I am not any worse than I am. So maybe we will just concentrate on making our home and lives as comfortable as possible if this is the way I am going to be left by the uncaring side of the NHS. I take magnesium mall ate, vits A, C, E and D, Selenium, Ubiquinol (which is high dose CO Q10), an aspirin once a day to thin my blood (which I know to be sticky) and codeine and paracetamol when the pains get really bad. Being ill is expensive!
Am still thinking about it though. Do I want to know I am positive and still get no help here? Do I want to know I am negative and have no explanation for these symptoms? people will say "Oh but you MUST try! Sell your house etc if you need to but try!" It's ok for them, they have not got it! Besides, going to and from Germany could set me back and put me in bed like other sufferers sometimes end up! No easy decisions I am afraid....