I thought I’d have a go at making placards for the protest next Friday. What do you think of this one – it’s being screen printed on self-adhesive vinyl at A1 size?
On these two days, around the world, Lyme Disease sufferers, their friends and families, from 29 countries will protest about the poor response of their political and medical systems to Lyme Disease. I will be going to London, flying 700 miles, to take part in our event at the Department of Health in Whitehall. Awful though the disease is, it’s good for us in the UK to hear that we are not alone in having to fight for timely and correct diagnosis, and recognition of the disability the disease can bring. It has struck me, just this morning, that although many of these countries have quite different medical systems, and they operate in different political contexts, the controversies are the same. So I wondered what they do in China, where both medical and political contexts are about as far from ours as can be imagined.
Web browsing for the official Chinese position on Lyme I stumbled on this from a USA Congressman’s (Virgina) site. It’s just over a year old and refers to the outdated IDSA guidance having been reinstated without revision. http://wolf.house.gov/index.cfm?sectionid=34&itemid=1861 and I wrote to the 3 named Congressmen to congratulate them and find out how it has progressed since then. Anyhow, it seems the Chinese have isolated about 9 different strains of borrelia but the majority are afzelii and garinii, the most common in Europe. While I was in the writing frame of mind I dropped a line to my old mucker Charles Kennedy (MP), and HRH Prince of Wales for good measure, as well as helping NS (a.k.a. ‘Limeywifey’ – look for her blog) send press releases to news outlets.
The other BIG news of the day was that my dear, wonderful, funny GP agreed to extend my antibiotics for a further 8 weeks! What a star!! Given that many people can’t get past 14 days of Doxycycline it’s nothing short of miraculous that he would let me go 32 weeks of the triple drugs. Of course I had more blood tests to do, to make sure my liver is coping. I have been wondering about why, if I started treatment within 5 months of a known bite, the Lyme is so entrenched with me and came up with a theory: I’ve had it a lot longer. I’ve been bitten by ticks pretty much every year, sometimes more than once, since we moved here in 1998. In 2003 (I checked my records) I went to the doctor with a curious set of neurological symptoms that obviously resolved. With the benefit of my pseudo-expert hindsight these symptoms look pretty much like Lyme. It’s a ratbag of a disease: it can lie dormant for week, months, years – maybe kept in check by a strong immune system – only to emerge when you are down for some reason.
Do you do the Lottery? You have a greater chance of getting Lyme Disease.
The odds against winning a life-changing jackpot in the UK lottery are roughly 45,000,000 to 1. Forty five million to one, and yet you think it’s worth a gamble.
However, and based on official (underestimated) statistics, your chances of getting Lyme Disease, also life changing, in England or Wales are 60,000 to 1, in Scotland about 17000 to 1. How do you like those odds?
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:-
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.
Yesterday, April 1st, Channel 4 TV aired a piece on Lyme Disease, as part of its series “Embarrassing Bodies”. I’m not clear about why a feature on Lyme Disease would feature on a largely voyeuristic (if fascinating) programme on embarrassing conditions. Any coverage on Lyme Disease is to be generally welcomed. Short slots on programmes are, by definition, not able to cover a subject in depth so whatever they do say needs to be 100% accurate.
It was good to see that they estimated the number of cases at 3000 a year, and to state that it is becoming more common, but the programme makers stated that the most common symptom of Lyme Disease is a “bullseye” shaped rash at the bite site. This is incorrect, as Channel 4’s own website for this programme, states – as few as 30% may present with a rash. As any sufferer would know, the range of symptoms is wide, and often baffling to GPs, and it would have been more helpful to show how, taken together in the absence of the classic rash, they can nevertheless lead to an accurate diagnosis and, critically, early treatment. It was good to see that they at least featured a sufferer who has been paralysed by the disease, but perpetuated the myth that you have to be walking in forested undergrowth to be at risk. You could get Lyme Disease in your garden, and the sooner the population wakes up to that the better.
THEN, the very next day, another edition of the same programme said that you are more likely to get Lyme in the eastern USA than anywhere else, and that you are especially at risk paddling in fresh water!! There was no mention of the large chunk of northern europe where you are equally at risk – especially if, in these straightened times, you holiday closer to home.
It turned out that this episode predated the 1 April edition but it is inexcusable to rebroadcast information that has previously been shown to be inaccurate and misleading (apparently it was widely flagged up to Channel 4 at the original airing). The very least they could do is broadcast a correction.
That’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.
Well, that’s a relief! I had my ultrasound scan and got the all clear. Immediately after I had a follow-up with my super GP, and we discussed the interaction of Bromelain and other drugs. I decided, against his advice, to resume the Bromelain – but only one a day (500mg) and only on the days I am not taking Amoxycillin. I had been suffering quite a lot with joint pain in my hands, wrists, and elbows but this suddenly eased after I started the Bromelain again – probably a complete coincidence. I had also been getting a persistent swollen ankle and that cleared over the same time so I have been ruminating about this and my recent flare up of plantar fasciitis and imagined the following:
Bb is transmitted into the blood stream. It illicits an immune response but, in many individuals, manages to survive without doing that, so the host may not know they are ill until it is ‘everywhere’. It has a slow reproductive cycle so I presume it prefers to stay in the blood where it ‘learns’ how to evade / protect itself against our natural autoimmune defence processes (using biofilms and cysts). If we know we are infected we take the antibiotics (if we are lucky) but the bug does its escape and evasion thing so we take more / different ones that can get round the bug’s defences.
Now, I know the infective agent doesn’t ‘think’, but it helps to imagine that it does. What does it do next? Does it retreat to where there is little, or no, blood supply: joints, tendons, ligaments, scar tissue – anywhere it can hunker down and wait for the environment to be less hostile and, maybe, adapt to the antibiotics because the exposure is limited? So, what does it need to survive the wait? Nutrients? Oxygen? What? How long can it wait before it has to come out for supplies – or die? A fellow Lymie suggested that she has more trouble with sites of former injury – Lyme related swelling, for example, in a formerly broken ankle.
I was thinking that the sudden appearance of multiple joint pain, after many months of progressively more intense treatment, may be evidence that the infection has retreated to sites where it is least exposed to the ABs, but inflammation at joints might be damage to tendons caused by the ABx: tendon rupture is a known side effect of some ABx, though not as far as I know of Amoxycillin, Azithromycin or Tinidazole, but in combination?
If the infection has localised in joints and tendons, how do I get it out of there and back into the blood? One way would be to stop medication for a while. Is there a way of getting antibiotics to ‘bind’ to medication that targets joints, tendons and bone (like Chondroitin and Glucosamine)? Another might be to introduce an antibiotic ‘wash’ directly into the joints. I don’t know if this is possible or could be effective (I’m sure it would hurt!). My swollen ankle might be evidence of an overloaded lymphatic system trying to process infection, or the debris of infection. It might also be an autoimmune response to accumulating debris rather than active infection. Does anyone know if Bb can pass through into Lymph? Could Bb be ‘screened’ out of blood, by a process like dialysis, for very sick patients?
Is there anyone ‘out there’ who has answers to these questions?
I’ve been having a tough time lately: lots of leg pain and the sudden appearance of cripling painful plantar fasciitis. As well as my antibiotics I had been taking an enzyme supplement, made from pineapple, called Bromelain. Bromelain is quite effective in reducing clotting time and I was taking it because about 18 months ago (the same week I was diagnosed with Lyme) I was found to have two clots in a leg – DVT. Lyme can cause hypercoagulation, indeed it might have been that which caused my DVT. I still wear compression stockings (normal for two years after diagnosis for a DVT) but as I’d been quite inactive lately (and taken a 90 minutes flight) I thought it wouldn’t hurt to ‘self thin’. This may have been a mistake. I realised that my increased pain coincided with starting the Bromelain, so I Googled interactions with drugs and found Bromelain is known to enhance the uptake of certain drugs – including Amoxycillin! I stopped the Bromelain and in 24 hours I was a lot better. Doh.
However, you may have noticed I said the Bromelain may have been a mistake. Two weeks ago, at my review with my GP, I told him about some of my leg pain being reminiscent of DVT. He examined my legs (one of which is slightly swollen) but thought it was more likely to have been the Lyme. Yesterday I was still concerned enough that I went to the surgery and asked directly for a scan, but the doctor I saw preferred to do a risk analysis and take a blood test. Today the test came back – marginal – so now I’m booked in for a scan on Monday. The doctor still thinks there’s a good chance this is something else, but I may have a DVT after all which would complicate, if not completely stop, my treatment for Lyme. Boo. Fingers crossed.
Well, glory be, I’ve had my first Herx. To those not in the ‘Lyme Club’, that’s short for Jarisch-Herxheimer reaction. In the early 1900s these two described a severe worsening of symptoms in Syphillis sufferers, when under treatment, caused by the toxic product of the ‘die off’ off bacteria. With all the drugs I have had in the last 18 months it’s a surprise to me that I’d never ‘herxed’ before, but I guess it says something about the effectiveness of the treatment I’m on now compared with all that went before. I’m in week 11 now and will revisit my GP in week 13 when I will just have run out of pills. Onwards and upwards (and, occasionally, sideways)!
Happy New Year to you, my reader.
Sorry I’ve been off line for a while – staying away from home in a place without internet access. I just wanted to post a progress report on my treatment, which has now been going for 6 full weeks (week 7 starts tomorrow). I’m on the ‘triple ABx’ protocol: Azithromycin and Amoxycillin 4 days a week and Tinidazole on the other three. My doctor consulted with a doctor in England and the suggestion was that I stick with this for 8 weeks and, if without symptoms by then, to end after 12. The side effects have been (so far, touch wood) very mild: I’ve not had much ‘herxing’ nor upset tummy. The most persistent has been occasional bouts of oral candidiasis, but even that hasn’t been unmanageable. I’m much improved and feel like I’m getting my life back at last. Many symptoms have reduced to ‘not bothersome’, while others have stopped. With only 2 weeks to go (to the 8 week threshold) I suspect I’ll be going beyond 12, but maybe not as long as the 24 weeks endured by the doctor in England.
I found my GP open to reading papers, including another doctor’s piece in the BMJ last year, so keep the faith if you are having trouble with your GP.