Annoying, frustrating, predictable, useful, curious- why does Lyme do this four-weekly flare up thing?
This post may be rather incoherent and short as I am having a four weekly flare up right now. Bleugh. For the last week, I'd been walking normally and had virtually no symptoms. Done loads, felt great. Then, on cue, it's back. Walking like a jellyfish on stilts, brain power of a demented sea slug, dizzy, insomnia (yet shattered), twitching muscles, nausea, random pains, weakness, typing like my dad, fainting when I stand up, palpitations, swollen glands, feel like I have bin juice coursing through my veins instead of blood.
I'm used to this phenomenon, but when I first had Lyme in 2008/2009 I was continually disappointed at the arrival of my 4 weekly flare up. It only really appeared after the treatment started to work, I was just ill all the time before that. This time, I've had it from the start- I've even put green Lyme lines on the calendar to show when I expect my spiros to start having a party. Useful, since I don't schedule anything taxing that week and try to have any doctors appointments when I have my flare so they can see what I'm like. I also think it's a good sign that I am good inbetween.
Why do these flare cycles happen? As far as I can make out (and with today's brain smog, this is kind of like my toddler reading Chaucer) there isn't really any research done on that. There are theories- and (again, I could be wrong), which seem to suggest it may be due to periodic changes in the surface proteins of Borrelia, or it may be correlated with the menstrual cycle, or, it may reflect the growth cycle of the bacteria, which is intermittent- it is having a sudden burst of reproduction and activity every 4 weeks or so. Tick-borne relapsing fever (also caused by Borrelia species) is named after it's characteristic relapsing remitting pattern.
This is probably quite a useful link (Thanks Joanne Drayson!)
Whatever their cause, they are really interesting to me, and really characteristic of Lyme. Not everyone seems to have them, from what I can tell speaking with other sufferers, the sicker patients tend not to notice these monthly flares, they emerge in the less ill or the patient undergoing treatment.
What I find quite amazing is that normal doctors seem baffled/not interested by this. They are surely familiar with the periodicity exhibited by malaria- yet when I mention this regular flaring (always preceded by a good week), they look blankly at me as if I am speaking in tongues or something. I think it is rarely/not mentioned in the ISDA/BIA/EFNS guidelines or other articles they may have read on Lyme, so they're probably thinking I'm nuts. I would have thought a patient describing such a relapsing-remitting disease is very far from nuts and is offering a very useful diagnostic pointer.
I would be really interesting to know how many Lyme patients notice this cycle, and if as many men as women experience it.
Dr Marie Kroun notes that spirochetes can be seen in wet blood smears during these flares,
so I am off to sit at my newly-borrowed microscope to see if I can see mine. I saw them back in 2008 (see video below) - apologies for the poor quality, I was literally just holding a compact camera to the microscope lens. We saw other, better spiros (including one entering a white blood cell), but the camera batteries ran out at the critical moment!
.. having just watched those back, I realise you can't actually make out the spiros in the uploaded version- you can in my version-honestly! if anyone wants the original files, I can send them on to you. Doh!