My existing stock of antibiotics runs out on 19th June, the day after I get back from a trip to Devon, so I have to think about making an appointment with my prescribing GP now, before I go. By then I will have been on this ‘triple’ drug regime for 30 weeks and there is no doubt in my mind, and confirmed by my wife’s observations, that I am improved and still improving. I am not asymptomatic but those symptoms that remain are less in frequency, amplitude and duration, but the trip will involve two flights, some train travel, a good bit of driving, sleeping in a strange bed and a lot more general ‘activity’: it is going to be tiring as well as stimulating. It is for these reasons that I have been prompted to review the last 28 weeks and set them against what I see happening with others on the same or similar treatment, and on other treatments, as reported on various patient groups.
It is clear that we, the patients, all start from a different place: we are different gender, different ages, different genetic make-up, presumably different health baseline before getting Lyme. Some of us have been bitten once, some many times, some of us were diagnosed relatively quickly, but may have been asymptomatic for a long time, some remain undiagnosed and self treat, some are on relatively uncomplicated treatment for short periods, while others (like me) are taking lots of stuff for a long time, some are repeatedly treated with varied drugs. Very, very few are brave enough to declare themselves fully cured or even largely recovered – especially in the long term. I have friends who are in periodic relapse, even after long (years) of treatment, and know others who are improving only very slowly and inconsistently on the same drugs that I take.
So, in thinking about what I should do after week 30, I have nothing much to measure against: should I just keep on doing the same (assuming, and it is a big assumption, that my GP will continue to prescribe), should I stop for a while and see what happens, should I try a different approach? In the last month I have added a couple of herbal supplements to my pharmaceutical drugs: I was already taking an enzyme, Bromelain, as a biofilm disruptor. Bacteria like to ‘cloak’ themselves in biofilms which drugs find hard to penerate. Now I also take Astragalus and Ashwagandha because they both stimulate the immune system and are anti-inflammatory. My memory is vastly better; I am able to hold a multi-threaded conversation, recall names and numbers, in short I can think straight again. I have hardly any muscle spasm, cramp or joint pain. I still have poor stamina, but then I am unfit and overweight, and effort does tend to take a couple of days to recover from.
I have come to the conclusion that we, patients, orthodox medics, so-called Lyme Literate doctors (LLMDs), all are scrabbling around in the dark experimenting: nobody really knows what is going on, if we did we would all be following a well defined and proven protocol from diagnosis to cure. In short I think one of the main obstacles to finding a reliable, effective, treatment is the deluded belief that there is one answer, indeed any answer. All we can do is try to be consistent in what ever treatment we decide to follow, to record what we do and what are the consequences, and keep an open mind. It is understandable that pain and decline lead to desperation and panic but I believe that it is very counter-productive to our individual and collective well-being to ‘cherry-pick’, and skip from one treatment to another but it’s easy for me to say, from a perspective of relative good health, that we would all benefit from being less frantic. It may only take one significant relapse for me to change my mind.