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.

Universal Credit – they just don’t geddit!

Calling this bunch of idealogues a government is increasingly absurd, so I’m calling them “The Management” from now on.  While any multi-trillion value commercial business would be managed by professionals – our management learn on the job.  Every 5 years (if you don’t count interim reshuffles) they start all over again.  Of course we have the civil service (and other) advisers, but they evaluate policy ideas from the management, they don’t develop policy.

So the latest nonsense is the plan to “simplify” (a.k.a cut) the benefits system by introducing something called “Universal Credit”.  That doesn’t mean the Zorgons can get pensions or housing benefit in the Gamma Quadrant, though it means ordinary Earthlings have about as much chance of surviving on them as flying to Mars in a Nissan Micra.  You have to have a bank account, be computer literate, and be able to manage your finances month-to-month.  Only a totally out of touch, upper-middle class, public school educated rich boy would think that was remotely fit for purpose or appropriate.  Oh, by the way, the whole thing is underpinned by a new, Management inspired, “real time” IT system.  Remember the shambles when the tax system got “upgraded”?

I know this is a huge generalisation but doesn’t anyone in the Management understand that people who really depend on state benefits are, almost by definition, likely to be less able with IT, or have limited acccess?  It’s just assumed that you’ll have a computer, a broadband account and a telephone line – after all, doesn’t everyone?  You are less likely to have an operating bank account, more likely to be in debt and living day-to-day, to have pay day loans, be more likely to be in housing stress and fuel poverty?  At the moment you can have your state pension paid weekly; is that to be paid monthly too?  Those in receipt of housing benefit will have it paid to them, rather than direct to the landlord.  The predictable consequence of that is increasing rent arrears, more evictions, and private landlords pulling out of the market leading to a further depressed property market (buy-to-let having been about the only property transaction growth area in recent years).  I can’t believe that, somewhere, someone has done a risk analysis of these changes, so I can only assume the intent is politically motivated, which is where this post started.  GRR.

2013 Budget, the Bedroom tax, Cyprus and the Ruskies, Energy prices

At what point will our inglorious chancellor finally take responsibility for his decisions and their consequences, rather than continually blame the last government for “getting us into this mess”?  3 years and four budgets into their term of office it is all getting a bit thin.  Who created the global financial meltdown – the Labour party?  Who destroyed our industrial base and decided the UK should, henceforth, be a service driven economy?  Margaret Thatcher et al.  How could anyone in their right minds think an economy based on servicing ever increasing consumption was a good idea?  Look at the countries around the world not (much) affected by the omnishambles.  Mostly they have economies with manufacturing and mineral resources.  Didn’t anyone see that killing off steel, coal, shipbuilding and heavy engineering, and relying on service jobs was flawed?  Didn’t anyone see that service jobs are easily transferred abroad to countries where labour is cheap, where regulaton is non-existant and, frankly, where the populations are more interested in actually providing a service?  Jeez.

Now we, the tax payers, will fund a state underpinning of the mortgage market to “kick start” the housing market.  Doh!  Isn’t over-reliance on a property growth based economy how we got into this in the first place?  Doesn’t anyone remember anything?  A budget for “an aspiration nation” – the admen are at it again.  We want to encourage people into work – where are the f***ing jobs!?  By the way if you rent a house and have a ‘spare’ room you can’t keep it, but the government will help lend you the money to build a spare house if you like.  Presumably the cynical thinking behind that little nutmeg is that if you give people in rented social housing a financial break they will only spend the money on feckless things like food and heat, whereas second home owners will strip the shelves at B&Q, IKEA and Homebase  (on credit) to furnish their aspirational lifestyle.  The government of this pathetic country has lost all moral credibility (oh, sorry, it can’t lose what it never had).

Now, what’s going on in Cyprus (the Greek part)?  The EU tried to bully the Cypriots into plundering the savings of their citizens as a prerequisite to getting a bail out bung.  The Cypriots say “Upas Yourus” and cosy up to the Russians.  Now Cyprus (the Greek part) is already, apparently, heaving with Ruskies.  What do they possibly want that Cyprus has?  Certainly not souvlaki and yogurt.  Well, apart from sunshine, and being a great place to launder money (allegedly), it is strategically placed in the Eastern Mediterranean  – nicely near Israel, Turkey (on the southern flank of NATO), Syria and the Suez canal.  It’s all like poker.  The Cypriots know that Russia doesn’t have a naval base in the area…..and we are pulling our troops back from Akrotiri etc.  Nice big air base going spare?  Conspiracy theorist, moi?

Apparently the energy companies are only making obscene profits because the weather has been bad.  Thats alright then. Lying B***tards.  Throw another manifesto on the fire, that will keep you warm.  Anyhow, the government is now considering scrapping the winter fuel payment to pensioners; no doubt they will target “better off” pensioners first, but that’s the thin edge of the proverbial wedge.  How’s this for an idea: since the energy companies make even more obscene windfall profits in bad weather, why not tax that (levy the windfall) and give that to the pensioners?  Why not make the winter fuel bills discounted for pensioners (a paper exercise) and why not take VAT off domestic energy altogether?





Freedom of the press

Amazing.  Leveson is not to be implemented IN FULL, at least there seems to be an element of press voluntary involvement.  The three main political parties are each crowing about how they have won….even though what each wanted was different.  So it looks like the Press barons will get what they want and it will be a commercial decision as to whether they lie, or infringe someone’s privacy: if the legal costs are worth the boost in circulation, what the heck.  It makes you wonder what they have on these politicians in their collective files to wield such power.  Conspiracy theorist, moi?

Phew – not a DVT!

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?

Learning lessons the hard way

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.