Monday, 17 September 2012

The four week flare-up and spirochete video

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!)

http://lookingatlyme.blogspot.co.uk/2010/01/symptom-flares.html

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,

http://lymerick.net/newsite/viewpage.php?page_id=3 

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!

5 comments:

  1. Thanks for re posting this information. When I was first ill I noticed that I had three weeks really bad and one week not quite so bad after many months of treatment( it took 7 months to get off steroids and give immune system a fighting chance too) I began to realise that I was having three better weeks and one really bad week.

    I stopped antibiotics over a year ago and noticed I still had these four weekly flares - I hadn't realised that we notice these whether we are on antibiotics or not and my guess is, it is a good indicator to add to the list that we are struggling with a Lyme infection. One has to question how many patients with relapsing illnesses or illnesses that flare in this cyclical manner, may well have an underlying condition of Lyme Disease, guess most have never even considered that.http://lookingatlyme.blogspot.co.uk/2012/09/relapsing-illness.html

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  2. Hi there, I was wondering how you went about looking for the bacteria in a blood smear? Required magnification, any reagants required etc. I have access to microscopes at work so would be interested to have a wee look at my blood as I don't believe my negative ELISA tests either, but don't want to spend thousands on private diagnosis if it's all in my head. Thanks!

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  3. I flare in 4-5 week cycles. I freak out each time it happens because I've only been treated for 5 months and keep thinking I'm just decompensating. I've been off abx for 5 weeks and am having a flare now. I've been searching on the interwebs to see if it's a common occurance and I'm glad to see I'm not the only one.

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  4. Hi there...
    I'm not sure how old this thread is or of anyone will see my comment but I figured I would go out on a very achy limb and try! I can totally relate to these flare cycles! Mine come about every 4 to 6 weeks and I hadn't thought about it before but maybe there is some correlation between the two, I thought I would share my symptoms to see if anyone can relate, this is usually how the cycle starts

    Digestive issues, chronic heartburn and constipation
    Skin crawling (like there are bugs underneath my skin and cobwebs on my nose and cheeks)
    My skin (mostly on my face) feels extremely sunburnt like I have been sitting in the sun for days without any sunscreen.
    The inside of my nose gets inflamed and sores form, like little blisters
    Rash on both of my cheeks that is very itchy, blisters form and then eventually burst making my face extremely painful!
    I usually get one of these blisters on my arm somewhere, bigger than the facial ones that are fill of a clear substance that looks like water, they are incredibly painful until they burst
    Flu like body aches and pains everywhere
    Disabling fatigue.
    Usually this whole cycle can last anywhere from one to two weeks, the only thing that seems to help is Azithromyacin (probably spelt wrong sorry) but I have such a hard time getting it, there are literally no LL doctors here on the island of Oahu (Hawaii) There is one doctor on the big island Sam Ruben who is a specialist in the field of Lyme but he isn't taking patients yet as he is still training. I am very dubious about paying for the Lyme testing as it's around $600 and Dr Ruben says that not everyone with Lyme tests positive which to me seems like a waste of money! I have been symptomatic for the past 6 years since I was involved in an accident in which I broke my back and suffered a TBI (traumatic brain injury) Dr Ruben believes that the trauma of the accident woke up the previously comatosed Spirochetes and it has been a full blown party ever since! I believe I contracted Lyme back in 86 after a friend's tick infested dog jumped on my healing appendectomy stitches causing a massive infection, I now looking back believe that the dog was probably infected with Lyme itself and passed it on to me. This just seems to be the most likely time although I have been bit by ticks on two other occasions during my life time. It now seems to be affecting my menstrual cycle as well, my usually regular as clockwork period is now 16 days late, 3 pregnancy tests all of which are negative. I have been reading that a lot of people with Lyme have also experienced issues with their menstrual cycle too. These little b@$#ards seem hell bent on completely initiating my body! It's so frustrating! Especially when there are no LL doctors here that can help me. It's quite literally like sitting in a waiting room waiting to die, it sucks!!
    Boo xx

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  5. Inialating* Sorry brain damage affects my spelling!

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