13. Day Forty-two
You haven’t heard from me for a while, not since day twenty-seven and today is already day forty-two of this Lyme Diary. I’ve been concentrating very hard on two things: planning for next year and what I want to do when I’m healthy again (that’s real proactive positive thinking, or what we used to just cheerfully call “optimism”). And secondly, I’ve been working on my treatment.
I started a new antibiotic on day thirty-five. We Lymers call it Clary. All the antibiotics have nicknames, like old friends: Doxy, Metro, Tetra and so on. And then I had four days of “herxing” – that means Herxheimer reaction, the pain you suffer from bacterial die-off. Not nice, but necessary, unfortunately. So on day thirty-eight (that was Friday), I decided to try out the sauna and swimming pool right next door. It was heavenly. I’m going to go there again today, just as soon as I’ve finished writing this, and spend three hours sinking into a state of utter relaxation. I can see you all going green from here.
I’ll probably take the book with me that has kept me spellbound for the past week or so: “Cure Unknown” by Pamela Weintraub. The story is too complex for me to summarise here, but it takes you through the history of the discovery of Lyme disease in a place called – you guessed it – Lyme and what the medical and scientific community then did with it. It is not nice reading. It is a story of treatment denial and patient belittlement. And the worst of it is, it doesn’t seem to have got any better in the meantime. In fact, most doctors have been scared off treating chronic Lyme disease in the US at all. Actually, chronic Lyme disease doesn’t even exist. It has been renamed “post-Lyme disease syndrome”.
That word syndrome kills me. It always crops up when noone knows what else to call a disease where the cause is a subject of intense debate and no agreement has been reached on how best to treat it. Chronic fatigue syndrome, Gulf War syndrome, Chernobyl syndrome. Look it up in the OED, it says: 1. a group of concurrent symptoms of a disease. 2. a characteristic combination of opinions, emotions, behaviour, etc. Take your pick.
I could rant on for hours about Lyme disease, but I guess you don’t read this really to find out more about my complaint, even if it is shared by hundreds of thousands of people around the world. And the point of writing this therapeutic blog was to explore the connection between my chronic illness and the pitiful state of the world. In other words, why did I get sick in the first place?
One of the points made in the book is that not everyone gets sick, even if they are infected with Borrelia Burgdorferi. And the other point worth mentioning is that I was not sick all of the time in the last nine years either, only some of the time. Obviously, this has to do with the state of the immune system. The results of the test I had back in October showed that my CD57 rate was 47.9. This number indicates the level that the immune system is working at. A normal immune system should have a number between 60 and 360. Ergo, I have a suppressed immune system. This is a sign of an active, chronic infection and should disappear when treatment is successful.
But according to Weintraub’s book there are some questions about how much of the disease is caused simply by the bacteria and their toxins and how much is an immunity problem or even an autoimmune reaction. This is what the big fight is about. It could be, however, that it is a combination of both factors and not just one or the other.
So what gives us a strong immune system, other than eating endless quantities of fruit and vegetables like Mum told us to? That’s where the psychosomatic reality kicks in. An immune system is like a firewall. It keeps the pathogens out. But what happens when you are always worried about all the bad things going on in the world? What happens when you feel responsible for them because of your colour, your country’s history or even your own family history? What happens when although you work your socks off to change the world to be a better place and it just doesn’t happen?
I read Michael Moore’s letter to Obama today. I just adored his naivety. I hate resignation and people who say it isn’t worth bothering. It is worth bothering, because it is easier to live with yourself if you bothered and did something. But there is always the stupid, nagging question behind it all that says: but will it work? I know that as I read his letter I was thinking at the same time that Obama won’t change his mind and suddenly say, “Okay, I read Michael’s letter and decided to withdraw the troops from Afghanistan after all. Thanks for the tip, Michael!” I feel so sorry for everyone that hoped it might be different after all, that Obama would change more and the terrible disappointment they must feel. And I hate reading the e-mail messages that say “I told you so”. Yes, we did read the speeches before he got elected and we knew he had a bad policy on Afghanistan. But sometimes people are ostriches. Even me.
While the Empire of the United States is busy digging its own grave, the German government is giving the fox the run of the nuclear hen-house. Having handed over the regulation of nuclear power plants to a guy that was working for the nuclear industry, they have also just privatised the biggest nuclear dump in the country. Not enough to have Asse leaking radioactive sludge into the drinking water, let’s take the controls away from the next mega-dump. Gerald Hennenhöfer was the guy who – it was discovered back in 1998 – tried to cover up the radioactive contamination of Castor containers that Merkel had to take the rap for because she was Minister of the Environment. Obviously, she has since forgiven him.
And since I am on a roll with my complaining, I’ll just add the Swiss to my list of totally unbelievable idiots. Well, 57.5% of the ones that voted in the referendum anyway. Need I even mention why? Okay, the clue is “tower on mosque” and the answer has seven letters beginning with M. Can’t wait for that one to go before the European Court of Human Rights.
So what am I doing wrong? Caring too much? Probably. But how much is too much?
The moment where it all became more than just being active because of political awareness was when I became a mother, corny though it sounds. You can worry all you want about climate change but in the end its not going to be my funeral. But when you have a child you suddenly become acutely aware of the world you are passing on to the next generation and your responsibility for that. When I was childless, I used to ridicule those people who said in their speeches “for our children and our children’s children”. I said, “why not do it for ourselves?” I still think, academically, that we should care more about ourselves and not martyr ourselves for our children (especially our sleep!) But the real world is different. A child opens up a whole new panorama of fear. Sometimes I dream that I am witnessing some incredible violence and then I suddenly realise that Jaime is right beside me and he is seeing it too. It was bad enough when I was alone, but with him there it reaches a level of agony that is unbearable. I feel like I have failed to protect him. And I know, when I wake up, that that is the truth. I cannot protect him from this world, this brutal and polluted world. All I can do is show him the lovely things and share my sense of humour.
X-FACTORED 
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