Lyme – To go ‘private’ or not?

Many Lyme sufferers that are failed by the state system go to private clinics, mostly abroad although there is one in Hemel Hempstead that specialises in Lyme.  Common themes in the described treatments from these clinics are:-

  • A long period under treatment (many months or even years)
  • A ‘core’ of standard antibiotics
  • A huge range of supplemental “naturaceuticals”
  • Testing for so-called co-infections, like Babesia, Erlichia or Bartonella  (almost invariably positive)

All of these are, pretty much, unheard of in the NHS resonse to Lyme Disease.  I, naturally, want to get completely well; there are endless stories of relapse on the standard drugs alone so I wonder about taking supplements.  I’ve always been open to an holistic approach to illness, so I am not worried per se by the addition of enzymes, vitamins and herbal preparations, but I don’t know what they are supposed to do or how they might interact with the drugs I am taking and I lean toward minimal intervention.  Some common additional medications are antimalarials, for co-infections, but I have read that they are also immunosuppressants which is not a good idea – I’d want to be supporting my immune system.  Commonly added enzymes seem to be Nattokinase and Lumbrokinase (and I have been using Bromelain).  These are used to disrupt biofilms which ‘cloak’ borrelia colonies and I have no doubt that when taking Bromelain I have had herx-like reactions which, I think, indicates that the pathogen has been made ‘free swimming’ and available to be killed.  There is quite a lot of talk about the role of iron in sustaining infection and I have seen it claimed that ‘starving’ the infective agent of iron would be helpful.  However the body needs iron to function properly, and I have also seen it said that increasing iron inhibits infection, so I don’t know.

I have been tested for these co-infections on the NHS, and the results were negative, BUT I’ve also read that a lot of these NHS tests are insensitive, or even ineffective: many Lymies who go abroad end up with positive test results when they have been negative in the UK.  So I wonder if I should pay for testing in, say, America and risk putting myself outside the care of my wonderful GP, which is the sort of thing that routinely happens to others (NHS doctors refuse to accept the ‘foreign’ test results as correct and deny further treatment, sometimes for anything and everything!).  If I can’t get my GP to continue my treatment beyond 24 weeks (regarded by some as too short a course) should I try to source antibiotics abroad or on the internet, with all the risks of drug security that this implies?

It’s a quandary.