This is about research in the USA, but an article to be published in The New Scientist this week extends the warnings to Europe too. Be aware. Be warned. Be careful ‘out there’.
In the UK, thanks to dogged persistence from the likes of UK charity Lyme Disease Action, some progress has been made. Establishment medics and scientists in the UK are more inclined to admit (at least in private) that there are grey areas in the diagnosis and treatment of Lyme Disease. Behind ‘closed doors’ they are more inclined to engage in discussion and joint research. In public, regrettably, their attitudes and pronouncements remain, like their career prospects, guarded. This linked article, from Huffington Post, describes how the battle lines remain starkly drawn in the USA. Be in no doubt that, despite the progress I mentioned above, these attitudes remain in the UK too.
As someone who fell into a Lyme diagnostic ‘gap’, and have suffered as a result, I recognise the issues only too well. My previous posts on Lyme Disease set out in detail how I fell ill in 2011. They describe how I was diagnosed and treated in the UK for Lyme Disease. My reason for adding this post now is that, three years after completing one of the longest and most aggressive (oral) antibiotic treatment courses I’ve heard of, I am again unwell. According to the established doctrine I cannot possibly still have active infection, so it’s a measure of how much attitudes have changed in the UK that I’m now awaiting the results of another blood test from the Rare and Imported Pathogens Laboratory (RIPL) at Porton Down. A test carried out in November 2016 was assessed to be “borderline / equivocal”. I was able to ‘leverage’ the tests because I have a history of tick bite and Lyme Disease, and I’m very knowledgeable about the disease.
The ‘Huff Post’ article talks about the need for new and more accurate tests. There is general agreement that a patient presenting with a clear Erythema Migrans (so-called ‘bullseye) rash should get treated without the need for confirming blood tests (though not all do). Therefore the improved tests are for those who are suspected of having Lyme Disease, or for whom treatment appears to have failed. Leaving aside the added challenges of recognising and testing for co-infection with other pathogens delivered with the same tick bite, the very difficult initial challenge is to heighten clinicians’ alertness. How do we raise in GPs the thought that a patient, who in a 10 minute consultation presents with symptoms that are ‘odd’, transient, and may be caused by 100 different things, might have Lyme Disease? Only after suspicion comes the testing. We’ll also leave aside, for now, the problems with efficacy of the standard treatment options.
Other diagnostic problems are what happens to those victims whose disease follows an atypical course because a) they have no rash (like me), or b) the rash is simply not recognised by a doctor, or c) the patients themselves simply shrug off the early symptoms, which often briefly resolve, until they are overwhelmed ? For these patients the very real risk exists that, by the time a Lyme Disease diagnosis has been made, the pathogen has disseminated throughout the tissues and central nervous system and will be difficult, if not impossible, to eradicate. And if they “fail” or, as Huff Post puts it “flunk”, the test – what then?
After two short-lived, but intensely painful, cramps (adductors) I went to my GP who referred me to a neurologist. The intention was to assess and perhaps investigate whether there was any permanent damage to nerves caused by the Lyme. Between my appointment with the GP and actually getting to see the neurologist I must say I seemed to improve, both specifically and generally, so it was a bit of a non-event, although he did appear to listen and he offered a lumbar puncture, and/or repeat serology. Now, I know that both of these would be unlikely to do other than show I had, at one time or another, been infected by borrelia burgdorferi (Lyme Disease) and, in the case of the lumbar puncture, are not risk free procedures, so I declined.
I asked him about the occasional twitching of my abdomen, not unlike a 6 month old foetus kicking: “I think it is most likely referred or actual pulsing of your abdominal aorta”. I couldn’t be bothered to argue about this, but the plain fact is that I twitch elsewhere from time to time and none of it is synchronous with my cardiac pulsing.
In the end we decided to watch and wait, and do a full blood screen for ‘everything including a malfunctioning thyroid’. This is highly likely to identify borderline (one side of the border or the other) Type 2 Diabetes! Q.E.D you don’t have chronic Lyme Mr Gold. The official line is intact, Public Health England can rest easy.
The blood test results showed absolutely…nothing; my GP is so reassured she hasn’t even ‘phoned for a follow-up consultation.
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 http://lymeywifey.blogspot.co.uk/2012/09/introducting-lymey-wifey.html 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.
I stopped taking massive doses of oral antibiotics, after 9 straight months, in mid-August. For a while, despite the physical and emotional stress of moving house, and country, everything was going well. Then, towards the end of September, I picked up a virus – that awful coughing thing that lasts for weeks, which developed into a chest infection. Having a stash of ’emergency’ antibiotics, for Lyme Disease, I put myself on a 7 day course of Amoxycillin, and that seemed to knock it out nicely. I began to have the odd Lyme-like symptom but ignored them: as those who have Lyme will recognise, it is all too easy to see Lyme at the root of every ache and pain. Then it was time to register with a new GP and have a through check-up. I need to lose weight and my blood pressure (exacerbated by ‘white coat syndrome’) was a bit high but otherwise OK. Come back in 6 months. Then I had a few more symptoms, nothing heavy, but more things, followed by the flu-prevention injection in mid-October. I thought it was time to check this possible resurgence of Lyme and put myself on the full-blown triple antibiotic therapy for 9 days. It was only 9 days because I stopped with an unfortunate reaction (odd, given I had never had a stomach problem at all in the 9 months of treatment). At about the same time a number of the symptoms got noticeably worse: muscle twitches and cramps are back (mild but there), my legs seem weak, poor sleep again,joint pain, more noticeable tinitus. I’m off to the osteopath today because my back is playing up (I think this is unrelated). So the $64,000 questions are:
1) after 9 months of treatment, did the Lyme come back?
2) or did the virus just knock me back (my immune system still being ‘flat’)?
3) or did the 7 days of Amoxycillin I took for the chest infection have some other effect (like attack some remaining Lyme)
4) or did the flu jab, which is supposed to be an inert vaccine, provoke something?
5) or did the 9 day ‘triple’ antibiotics actually provoke a Herxheimer reaction because there was some residual Lyme Disease?
I confess I don’t have a clue, although I definitely don’t feel as well as I did 2 months ago, Any ideas?
After 40 straight weeks of the triple-antibiotic therapy, and on the very day I moved into a new home and a new country, I stopped treatment. Now, six weeks on, I think it is time for a review. The first thing to say, as a headline, is that I am improved and I think I continue to improve. It hasn’t been all plain sailing though: I’ve had two periods of ill health since then, one of which resulted in me self-medicating with Amoxycillin (antibiotic) for a week. I got a respiratory virus which ultimately morphed into a chest infection. After another two weeks I’m more or less clear of that.
A much more interesting episode occured about a week, to ten days, after stopping the medication which I think may have been my immune system somehow ‘resetting’ or my body ‘clearing out’ after the medication. I suddenly developed a temperature which waxed and waned for 3 days, bouncing between normal and 102 deg. I was sweating profusely, even when my temperature was ‘normal’, sometimes in the day and sometimes at night. It was sufficiently worrying to cause me to register with a doctor who took blood and sent me off for a chest x-ray (for possible TB!!) – all of which came back unremarkable, except for a borderline result for a diabetes marker.
Meanwhile I have been able to walk further, and more regularly, and generally have suffered less muscle pain, fewer episodes of cramp-type feeling. For the most part I am sleeping better and thinking more clearly . During this period I have been coming to grips with a new home / location, doing more driving, helping look after my step-granddaughter on a regular basis. I think all of this is really positive, but I still have 7 weeks-worth of the triple antibiotics in a drawer in case. I’m monitoring my health and recording anything that might be Lyme rrelated on my spreadsheet. Next week I’m off to London for three days, one of which will be spent at a Lyme conference sponsored by Public Health England.
Well, my GP prescribed more drugs; what a star! That’s me well beyond the edge of what others have had, and particularly the English doctor whose article in the British Medical Journal started it off. She went 24 weeks on this combination. It was, probably, influenced by the news that I will be out of his care by mid-August as we have finally found a buyer for our house. The stress of organising a house move in a short time, to rented accommodation 700 miles away (and yet to be identified), will probably have some impact on my recovery, but hey-ho.
So I’m trying to decide now whether to stop taking medication when my present stash runs out at the end of this week (32 weeks) and hold the new prescription, of 8 weeks worth, in reserve for any major relapse. When we get to Devon I’m going to have to find a new GP, preferably one with an open mind (experience of treating Lyme would be too much to expect) but that will take time and, with ‘no fixed abode’, we will probably be treated as temporary residents. The NHS is a national resource, but Scotland has devolved health care so my GP is writing a “to whom it may concern” letter, to help introductions to new doctors. He’s also getting my blood test records to take away: I asked for the full record, that is not just “Positive” or “Negative” but exactly the type of test, where it was done and the detailed results (in medic speak).
Meanwhile I’ve had a mini-relapse: some tingling (including a new one on my face, like shingles), ankle swelling, tiredness, muscle pains and spasms. This has prompted me to wonder if, after all, there is some grain of truth in the orthodox medical position that after appropriate treatment there is such a thing as “post-treatment syndrome”. I don’t want to believe that after 31 straight weeks of aggressive treatment the Lyme has had a resurgence. Perhaps it’s the first impact of house-moving stress?
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.
It was great! My day started at 04.00; by the way, how/why is it that you always wake up before the alarm? Out of the door at 04.45 and there was only light icing to scrape from the car (after all it is only 10th MAY!) so the drive to Inverness airport at that time of the morning was quick and uneventful. The 07.00 flight was also unremarkable apart from being allocated a seat next to a terrified young woman with halitosis (why me, God?) and we were in a wet and windy Gatwick by 08.40. I had taken the precaution of buying my train ticket on-line, so that would speed up my transit through a busy airport. Silly me. I had an ‘off peak’ ticket which meant I couldn’t arrive in London before 09.50. Can you wait on the platform? No, said dragon lady, in case you are tempted by evil and try for an earlier train. So it was a mad dash through the gate to the train; thank goodness I had only a small rucsack, people encumbered by giant suitcaes, push chairs and flight-tired children had no chance. Into London Bridge at 10.15 I met a dear friend, who lives and works near there, for coffee and brioche in a very trendy coffee house in Borough Market. Then it was on the tube to Westminster, where I had arranged to meet my brother. Thankfully the rain had eased off and by 12 noon, the appointed hour, we were at the site of the demonstration – the Department of Health at 79 Whitehall. For those of you who don’t know, Whitehall is at the very centre of, and synonymous with, the UK government: a four lane road but wide enough to land a ‘plane on (except for the lamposts). The green flags and bunting of the Lyme protest were, from a distance, somewhat overshadowed by an adjacent demonstration on behalf of Professor Davinderpal Singh Bhullar – a sikh held in solitary confinement under sentence of death in India. Both demonstrations were oddly silent and polite, but physically penned behind barriers. Perhaps this was because they were literally opposite the entrance to the gates of Downing Street. God forbid that a handful of sick and desparate people be allowed to threaten to safety of Dave or Nick. Actually Dave was in Russia, meeting Poot-in, and who gives a toss where Nick was (or is, come to that)? There were one or two journos there, but more interested in the London Lyme threat than the story per se . One notable ‘meeja’ personality was there in a private capacity: a man who presents a weekly TV show on the BBC was there in support of his sister – a Lyme sufferer. It’s funny how you recognise a face (I watch the show every week) but, out of context, can’t put a name to it. Anyhoo, I introduced myself just as his sister, with whom I e-correspond, gave me a big hug – so that made me persona grata rather than just another gushing, “I just love your show” fan. He was charming.
The gang had made loads of flags with personal stories, hanging them on the barriers, and made placards and signs. I had designed some self adhesive, vinyl, signs which looked great stuck to street furniture and caused some positive comment. I’ll post a couple of images from the day. At some point the 5000 signature petition was handed in, but I missed that as I had decided to try to ‘engage’ passers-by who showed interest. Any negative observation seems churlish: it was a spectacular effort, brilliantly executed, and certainly got the attention of the broadcast media. Nevertheless I did think we were too introverted: being a small community, whose relationships are mostly conducted over the internet, we spent a lot of time looking inwards, literally in our pen, exchanging experiences and information instead of facing outwards to the public. I met a man who was infected by a tick he got from a dog grooming business in Chelsea and many fellow Lymies who are, or have been, much sicker than I and who have had limited or no treatment. Of course we mustn’t forget the many who were there ‘in spirit’ but too ill to travel. I still feel relatively lucky, but I’m only too aware that this is a long fight and it may never be fully won.
Trying to grab the attention of Londoners on a major tourist route, and on a Friday afternoon, will always be a challenge (even if your message might be a life-saver) but Londoners have perfected the art of ‘ignoring’ as they move about the city. Consequently almost everyone I spoke, or handed leaflets, to was a foreign visitor. I did accost a teacher shepherding her class across the road: “I don’t want your money, but please read these leaflets – you might save their lives”. Sounds pretty pompous now. I’m glad I took my folding tripod stool as there was no way I could have stood for 4 hours. My brother stayed for two hours, good on him, but I forgot to eat lunch, and only had one drink (tea) all day, so I was absolutely shattered by the time I got back to Gatwick and my feet were ‘fizzing’. Well done Nicola (UK event organiser). WELL DONE EVERYONE!! Hugs and love all around, including Judy who, in the run-up, put up with an even more Lyme-distracted husband than usual.