Waiting

I'm sick of waiting to start things!  I saw my LLMD on June 1st, a full week ago.  Without any supporting test results, she deemed that I have chronic lyme disease. However, she does want some back up on paper (and it would ease my mind a little too).  So she ordered a urine test in addition to a panel for the common lyme co-infections.  She also believes I have Babesia and possibly Bartonella.

Why am I waiting?  Because I needed to order a special kit to collect the samples.  And then they need to be sent to the lab with the correct timing so that they don't arrive on a weekend.  And the whole test is coordinated with a run of antibiotics.

It has been found that Borrelia burgdorferi (the spirochete that causes lyme) often hangs out in the bladder. Therefore, bits of dead Borrelia and its DNA can often be found in the urine.  Supposedly, when the host (that'd be me) takes a big bunch of antibiotics, more bacteria swarm to the bladder (could it be that the antibiotics aren't as strong there and its the safest place for them?), and higher amounts of DNA can be found. 

There are specific protocols for this.  I decided to follow one that doesn't involve injections (cuz there's just as many oral meds to take with that too, so it wouldn't be saving any hassle), and one that doesn't have cephalosporins, as I am allergic to cephalexin.

I will be taking 2 500mg pills of amoxicillin and 500 mg of probenecid (which raises the concentration of amoxicillin in your blood) 3 times a day for 5 days.  On top of this, I will be taking 250mg of azithromycin twice a day.  This I will continue until I see my doc again in a month.  On days 4, 5, and 6, I will be collecting samples from my first pee of the day.  Then I'll send it all in to be tested.  Starting on Wednesday enables me to send in the samples on Monday.

Why not do a simple blood test, you ask?  I've done several of those already.  Right now my body isn't making antibodies to Borrelia.  So doing another one would kind of be a waste.  There are tests that test for antibodies, what our immune system produces in defense of foreign invaders.  There are also antigen tests.  Antigens are the foreign invaders themselves.  One would think that just doing an antigen test for Lyme would be sufficient, right?  Well, its not that simple.

Borrelia burgdorferi is a sneaky crafty little bugger.  It changes form and likes to lie low when things get dangerous for it.  It can live in your blood, spinal fluid, joint capsule fluid, and even in your tissues.  So if you do a blood antigen test and it comes back negative, all it means is that they're not in your blood when you were tested.

Antibody tests aren't fool proof either.  When first infected, it takes a couple of weeks for your body's immune system to produce the antibodies.  Later in infection, Borrelia do things to your immune system to weaken it.  I am not entirely clear on how this works yet.  Its been confusing to me whenever I try to read about it.  Whatever the mechanism, the immune system is disabled so that it can't produce the antibodies.  Also, Borrelia coat themselves with protein that looks like the host.  In other words, it puts on a disguise, so that the host immune system doesn't see them as a threat.

As of now, I am seronegative.  That is, they haven't found sufficient antibodies against Borrelia to confirm a positive diagnosis.  Also, Borrelia DNA hasn't been found in my blood yet.  So rather than repeat the same things and expect to get a different answer, we're going to try something different.  The urine test.

So I've been not so patiently waiting to start.  I've been plotting and planning and worrying.  With lyme treatment, patients will get sicker before they get better.  And I'm already pretty sick.  I'm worried that I may become bedbound if I get much more ill.  And how is someone supposed to take care of a toddler when they're too sick to get out of bed?!  So I've been trying to think of options.  I'm also trying to balance being prepared without focusing on the worst case scenario.  I'm trying to be optimistic, but its tough.

I don't know how my stomach is going to respond to all those antibiotics.  I don't know how my body will react to the Borrelia dying off.  Rest is super important as well.  Jared, my husband, is trying to help me switch to convalescent mode instead of fighting to get ahead with the things that need to be done around the house. 

Its really tough to have a cluttered house and not have the energy to pick things up and put them away.  And to know that you really shouldn't push yourself to do it either.  Its tough to keep up with an active 3 year old. 

So I've been anxious and antsy.  I don't know what my physical response will be to the antibiotics.  I'm also nervous about the test results.  As important as it is to get confirmation that yes, this IS lyme disease, its also rather scary.  I pray for strength, patience, optimism and grace.