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[ailbhe]

In one month Emer will be two years old.

In one hour I will be at the doctor's to argue for a blood test for Lyme disease.

This evening we have more floor to lay and skirting board to remove and also some skirting to reattach. Later I shall dig out plaster and mix it up but thankfully the bit we're reattaching today has some fairly decent plaster to stick to.

I've emptied and refilled the hoover already. And we bought lunch out because the house is full of dust and empty of food.

Comments

[hopeforyou.livejournal.com]

In one hour I will be at the doctor's to argue for a blood test for Lyme disease.

Good lord, not you, too? What happened?

[ailbhe]

(a) He agreed ot the test immediately and gave me a two-week course of antibiotics.

(b) While we were on Aran with my mum we all got loads and loads and loads of tick bites. One of mine itched A BAZILLION times more than the others and I scratched it bloody while trying to convince myself I was worrying needlessly (which is why I didn't ask anyone to look at the mark for a trace of a bullseye rash, which was, in hindsight, foolish). The day we left Aran I started to feel queasy and the following day I had flu-like symptoms to the nth degree.

So I'm taking precautions, because Aran is where Mum's tick came from. She's practically well now, as it happens, though has been advised to get a personal trainer and go on a careful course of exercise, as her chronic fatigue is self-perpetuating. I haven't told her I'm on drugz as the limelight is on my sister's baby and I want it to stay there.

[hopeforyou.livejournal.com]

Two weeks, and you're that symptomatic?

Please go here: http://ilads.org/
And in particular, here: http://ilads.org/basic.html and read pages 1 and 2 there.

If they gave you an ELISA test, note that it's not that accurate and can give you a false negative. Also note that 2 weeks of abx is usually not enough... even the IDSA recommends 21 days. And HIGH doses are needed, not what's the usual for UTIs and URIs.

Also note that you might have coinfections, which are other illnesses that ticks can carry in addition to Lyme Disease, and they can prevent Lyme from being treated adequately.

I am sorry. This doesn't sound good. I am hoping that since you are catching this early that you will be okay and not get the chronic form, but this only works if you get HIGH doses of the right antibiotics early on (high = 2 g total of 2 diff antibiotics together (1 g each) daily) and do it for longer than you've been prescribed.

[ailbhe]

I don't know what test I am getting - he knows it's not reliable, whatever it is. My blood form, to take to the path people, says under "any other tests": "IgM - suspected Lyme Disease" so that's what he's asked for.

I appear to have Doxycycline 100mg 2xdaily for 14 days. I've been advised to wait 4-6 weeks from the suspected time of infection to get the bloodtest taken, and it will take at least a week to get the results.

I intend to start taking what I've got and try to contact the UK's Lyme people to get more ammo. Most of what I've found so far is the stuff we read on the GP's own computer screen. But this page http://www.hopkins-arthritis.org/arthritis-news/2001/doxycycline.html is encouraging - "Conclusion: The data from these two studies indicate: 1) patients with chronic musculoskeletal pain and or neurocognitive symptoms that persist after antibiotic treatment for Lyme disease do not improve with a prolonged course of antibiotics (either IV or oral); 2) early treatment (within 72 hours of tick bite) with a single dose of 200 mg doxycycline is effective in preventing Lyme disease." Also http://www.hopkins-arthritis.org/arthritis-info/lyme-disease/treatment.html - "In general, early Lyme disease in adults is treated with doxycycline 100 mg orally twice daily or amoxicillin 500 mg orally three times daily for 20 to 30 days."

So it does look like I need a further week of treatment, even if the dose is right, but I have enough to start with - I won't take a double dose today, or anything.

At this stage I am between one and two weeks from the first infection (I can't tell when now, it was a tiring "holiday") and 5 days since the onset of symptoms (currently asymptomatic).

[hopeforyou.livejournal.com]

I know about the hopkins study and other studies which state that antibiotics don't help with chronic Lyme symptoms. But those aren't the only studies... I can dig up more that prove there is still an active infection in one's body even after the typical course of antibiotics... It can often take 3 *months* on antibiotics for people with the chronic form to experience any shift in symptoms because the Lyme bacteria is cyclic in nature and goes into a dormant blastocyst phase just like syphillis does... Basically, it has active and dormant cycles, and the antibiotics only work to kill them when they're active.

I had the 200 mg of doxycycline within 72 hours, and I still got Lyme Disease. I also did not experience symptom improvement until I'd been on antibiotics for at least 2 months, and it was a gradual and shifting improvement of symptoms over time.

I would talk to the UK Lyme people, if you're talking about a support group of local patients... There are a lot of uninformed GPs out there who are undermedicating patients with antibiotics, and while I am all for stamping out antibiotic resistance, like malaria and tuberculosis, a lot of evidence points to longer term treatment being the way to go for this specific infection.

Going now... sorry i might not be able to comment for a while because my computer's HD may be failing.