I’m slowly introducing the full BCA drug cocktail to my dysfunctional body. It’s a bit like introducing a hungry tiger in confinement to a small blind vole. You think for a while that there might be an outside chance the vole will somehow manage to hide, or be rescued. But really you know that it’s only a matter of time before the tiger will rip it’s little body to shreds, leaving only the bones and maybe the eyeballs – because even tigers have standards, right?
Well I’ve definitely felt the wrath of the tiger. For a start I’ve had some pretty major brain fog and memory lapses, the most notable of which ended up in my partner and I drinking water that had been in a rubber hot water bottle for a week. HOW do you end up in such a pickle I hear you ask? Well, it’s easy when you have the memory of a lobotomised goldfish. I’d emptied the contents of a previously filled hot water bottle into the kettle to make a new one. I boiled it but then wandered off and forgot what I was doing. A few hours later partner came home and asked if I’d like a cup of tea, yes please, I said, (because only fools turn down tea) and she re-boiled the kettle. The kettle that had rubber hot water bottle water inside it. It was only when I had drunk half the cup that I pinpointed what the funny flavour was and how it got there. FREAK OUT ENSUED.
Memory lapses aside, I was particularly worried about starting rifampicin as it has a reputation for giving people the crazies. About half of the people I know to have tried it have quit within the first few weeks because of the mental health side effects. Whether they’re side effects of the drug itself or a consequence of bartonella (the main mental illness producing co infection) being hammered over the head, who knows. But the stories of people finding themselves hanging over the wrong side of the handrail above railway tracks at 3am didn’t inspire confidence in me when I already have a history of bipolar style rapid cycling mood swings when herxing.
My mood swings were quite something, by the way. I could go from the pits of misery with full on waterworks feeling like there was no hope in anything, wanting to quit treatment and just go and die in a hole, to being off my head hyperactive thinking I have superpowers like flying or being able to knit rugs with my feet. One time I spent 2 hours changing the lyrics to well known songs to include as many types of cheese as possible. I’ve tried to pour boiling water from the kettle with only my little finger and text my partner at work at 3am asking her to buy a tricycle.
2 days into rifampicin I thought it was going swimmingly and I wasn’t being affected at all. (Apart from the lobotomised goldfish bit.) I did however, completely ‘coincidentally’ have a bone crushing headache and a sudden extreme germ phobia. I’m talking about going from being careful about germs, because of being immuno suppressed, to having a complete meltdown because I touched a public door handle and having to wash my hands ASAP. All in the course of, well, about 2 days actually. When I got back home my mind was racing about all the things I’d touched, checking to make sure I’d washed my hands after each of them. Then I remembered that I’d slept in the same PJ bottoms in my bed at home right after sleeping in them in a hotel bed when we went up north to visit W’s parents at the weekend. BEDBUGS I thought. I was then convinced I brought home bedbugs, despite there being no evidence to support the hypothesis.
By this point I was crying. The fear was taking over. It was like sitting on the edge of an airplane’s open door waiting to be pushed out, combined with the sheer horror you felt when you realised for the first time that your parents have had sex. That’s the level of terror and alarm I’m talking about.
I know, I thought. I’ll ask the support group about it. They’ll give me logical reassurance that I’m A) not going crazy and B) not going to die of bubonic plague from touching a door handle. Some bright spark (I’m looking at you Sophie) said that it was an irrational fear because there are far more germs in the air than on any door handle. So then I was terrified of BREATHING as well as touching anything, thanks Sophie!
It was then that I had my realisation that maybe, just maybe, the sudden onset of paralytic irrational fear and bone crushing headache meant that I was reacting to the rifampicin after all? The shame. Even after being on the treatment merry go round for a year, it took me all that time, and embarrassing myself in front of the entire support group, to realise I was having the crazies from a drug that’s infamous for giving people the crazies. And the ‘D’uh of the year’ award goes to….
The thing is, I just wasn’t expecting anxiety. I was expecting mood swings, I had carefully prepared myself for mood swings, I HAD A PLAN for how to deal with them dammit. But no, that’s not how lyme treatment works. It likes to come up behind you and give you a wedgie when you’re least expecting it.
Neurological lyme disease herxing is a bit like being tied to a chair and being forced to endure a 20 course taster menu of mental illness. And that’s just the crazies, You also simultaneously work your way through the 20 course taster menu of physical illness too. It’s like every symptom you’ve ever had coming back for a quick kick in the balls one after the other. I’ve been very lucky that the depression side of things hasn’t been worse, or that I don’t have a permanent mental illness as a result of everything. But it really is amazing how a rational, healthy fear of things that do actually cause you harm, can so rapidly turn into a massive ball of debilitating fear and anxiety, all because of minute changes in brain chemistry from pathogens or drugs.
Luckily I’ve been around long enough to know what to do – drop the dose, up the detox, and today I’m feeling a lot more sane as a result. I’m only at half the recommended dose, so the next few weeks will be a barrel of germ infested laughs, I’m sure.