Here we go again – the legacy of Lyme

I am still not well and I ask myself “Is it back?”

There is no doubt that, for me at least, one of the most damaging aspects of Lyme Disease is the mental scar it leaves.  I can only speak with authority about my own experience but I would bet my mortgage on this being a typical experience.  The simple truth is that there is no test to establish ongoing / residual / active infection so if you continue to have, or develop, symptoms suggestive of active Lyme Disease you have to engage with the medics all over again as if it were a new, first, infection.

Readers of my previous posts on this topic will know what a disagreable prospect that is.  Had I still been in my previous, Scottish, home I would have confidence that my enlightened and experienced GP would assess my complaints differently than my new, English, GP will do.  I am older than I was, and borderline (maybe just over the border) Type 2 Diabetic.  So my new GP will now view my symptoms through that filter and, to be fair, many of the symptoms that have appeared (or failed to resolve 100%) could be caused by, or exacerbated by, Diabetes.

For myself, as I have said in previous posts, I am very reluctant to believe that I still have Lyme Disease after a prolonged and intensive multi-antibiotic therapy, on the NHS, which most ‘Lymies’ can only dream about.  And yet the drift of research and clinical evidence suggests that Lyme may, indeed, survive such an onslaught.  A Scottish Lymie acquaintance of mine, Nicola Seal, has a blog    that records her own journey through initial infection, treatment, wellness, relapse and, hopefully, now recovery.  She had more treatment than I have, and still relapsed and, if you read her blog, you would see that she carries the same mental scars: no matter how much treatment, or how well she feels, there is that nagging uncertainty about the reality of that recovery.

So, here I am; I’ve been to the Doctor and she listened.  I suggested we reconsider a new round of triple antibiotic therapy, on the basis that if there is no improvement we stop, but she proposes to refer my resurgent symptoms to her “Lyme expert” while testing my glucose intolerance.  My anticipaton was that this “expert” would say that, after all that treatment, I can’t possibly have Lyme and bounce it back to my GP.  This turned out to be largely true, although she (the ‘expert’) did say there were uncertainties.  I got the usual “it might be PTLS, Post Lyme Treatment Syndrome, or any number of other things.  I got the “some people benefit from another round of Doxycycline, but that’s likely the anti-inflammatory effect of the drug which goes away if you stop”.  I’d heard that one before, from an Infectious Diseases Consultant in Inverness, so didn’t feel reassured.  It was also suggested that I might be referred to an neurologist in Bristol who, amongst other neurological condtions, would look for MS.  All of this response is of course clearly predicated on both the consultant and my GP believing  that Lyme Disease is not resistant to treatment and cannot recur without reinfection.  So, my waxing and waning, relatively mild, migratory symptoms: itching and tingling, joint pain, pain in the soles of my feet, muscle pain, muscle weakness, twitching, tendonitis, insomnia, fatigue / lack of stamina, temperature variations, cramp and word searching, are caused by something else!  First we have to eliminate Diabetes as a cause, despite the fact that I had all these symptoms years before Diabetes was even suspected and, more to the point, completely disappeared for months.  Not surprisingly I’m thinking of restarting my daily symptom diary, moribund for a year.  Here we go again.  Or not.