Hey all, sorry I somehow missed the last few replies and haven't had a chance to report back.
@justy I did manage to get the prescription fulfilled by the chemist in Manchester, so thank you for your help with that. Have been to the chemist near KDM today, what a difference to the UK! Much more helpful/knowledgeable.
@Jonathan Edwards Thanks for your input, your evaluation of the immunological advice given to me is worrying, but if that is the case there is a lot of unsound advice being given in the context of ME/CFS and Lyme treatment - not that this would come as much of a surprise. This is a difficult question because we cannot base our treatment decisions purely on clinical trial data as one would prefer to do, there are no clinical trials for the treatment of late-stage Lyme since it is either insufficiently understood or rejected as a notion entirely. I consider myself to be a skeptic, which makes it extremely difficult to navigate when being bombarded by dubious remedies and treatments from all angles, it has been and continues to be a great source of concern for me. I was (and still am to an extent) enormously doubtful about the possibility of having Lyme myself, and more widely about the Lyme/ME connection that has been hypothesised, but I have now had three separate positive tests (MELISA, Immunosciences Multi-Peptide ELISA, LTT Elispot) and a partially positive Igenex Western Blot, plus low CD57, albeit with negative serology. My decision to go ahead with treatment basically boils down to "if it walks like a duck...". I recently saw a talk by a prominent (and oft-reviled) NHS doctor in the UK, Dr Richard Dryden, where he spoke about unclassified strains of Borrelia being discovered in Hampshire (where we happen to live) and some novel testing techniques that they are currently developing, which perhaps slightly increases the plausibility of the diagnosis (I can probably dig this out if anyone is interested but do not have it to hand).
I am actually in Belgium right now and my sister and I had our second ceftriaxone infusions today. I am seeing KDM tomorrow, I really want to ask about the lack of a cyst buster - having been on Doxy for a month prior to this it does seem like a glaring oversight. It is difficult to know what to expect from this process, planning and executing everything has been like a military campaign. We are yet to notice any significant changes in symptoms, which doesn't exactly increase my confidence in this being the correct diagnosis.
The cynical side of me suspects that this is probably a waste of time and money (I've sure been down that road with this illness already), and that Himmunitas wouldn't survive two minutes in any country with proper regulations. On the other hand there are so few doctors with the expertise and willingness to help people in this situation, at least ones which are not manifestly in it to exploit desperately sick people.