Lyme – Persistent Infection requires Persistent Treatment

TickBombThat’s the end of week 20 of my ‘triple’ antibiotics programme; I had a blood test last week to check that my organs were not being damaged by the heavy drugs, and all was fine so I am free to continue to week 24.  I have to acknowledge that I appear to have had a relatively easy ride with these drugs so far; my GP recently said he was amazed at how resilient my systems were in the face of the battering.  Some sufferers can’t tolerate even low doses of drugs like Doxycycline, whereas I had that one for weeks, at very high doses (400mg/day), and suffered no ill effects other than photosensitivity – I got sunburned.  I have been careful to support my gut with high quality ProBiotic supplements and yogurt, and my diet is alcohol free.

The biggest challenge, frankly, has been remembering what pills to take, and when, and what food or drink to avoid with each.  For a long time I used a 14 compartment pill box, available on the ‘net’ for less than £5, but when I started the ‘triple’ programme I bought a bigger 21 compartment one.   I’ve started to reintroduce the pineapple enzyme, Bromelain: it seemed to cause problems because, apparently, it increased the uptake of Amoxycillin.  I’ve reintroduced it, at one (500mg) tablet a day, on the Tinidazole-only days.  This week I took one alongside the midday Amoxycillin, on one day only, so we’ll see how that goes until next week.

Meanwhile, how am I feeling?  Well, I think I continue to improve, slowly.  I can’t expect anything rapid as this disease is incredibly persistent, and many of the changes are quite subtle.  I think I have fewer episodes of cramp or cramp-like nerve pains in my feet.  My brain is generally quite clear, and any lack of concentration or ‘fuzziness’ is more related to lack of adequate sleep.  I still have muscle and joint pain but mostly fleeting; the most difficult to deal with is the pain and loss of strength in my hands and arms (especially elbows).  I get periodic oedema (swelling) of my ankles and legs, sometimes with pitting and this seems to be on a 4 week cycle.

I’m planning to start weight-loss dieting soon, and I don’t know what effect that might have – either on the effect of the drugs or on the pathogen: do the spirochetes hide/live in fat cells?  My lovely GP will see me again in 4 weeks, at which time I expect him to stop treatment: we embarked on this protocol under guidance from an english GP who had taken the same, when she got Lyme herself, and was apparently well.  The original suggestion was that I ought to be symptom free for at least a month before stopping, so we’ll see if there is any will (on my GP’s part) to go beyond 24 weeks if I am still symptomatic then.  Lyme is a cyclical, relapsing / remitting, disease with a tendency to ‘flare up’ roughly every 4/5 weeks so I feel I should go at least one cycle without symptoms.

I’ve been dipping in and out of the EuroLyme website (members only, and hosted on Yahoo!).  I feel very sorry for the many who still cannot get ANY treatment from a doctor.  GPs are still threatening patients with being cut off from ALL support, for ANY illness, if they insist on taking medication for Lyme that they themselves refuse to prescribe and which other GPs (like mine) do.  It is nothing short of scandalous, and maybe even criminal, but it certainly is unprofessional. The arrogance is breathtaking but, hopefully, there is a light at the end of the tunnel: apparently the Health Protection Agency, in consultation with Lyme Disease Action, is about to revise its guidance.

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