May 21, 2010
BARTONELLA, A BLESSING IN DISGUISE
at our appt with DR D at the beginning of this month (which i'm now just getting around to blog about) we learned some difficult news. (which is why i'm now just getting around to blogging about it)
first, it was confirmed that taylor does indeed need to start on aggressive abx treatment. this means that he too must now start seeing DR H for treatment.
second, DR D made it clear that his plans for the (foreseeable) future -as in leaving for boot camp in june - must be delayed for at least a minimum of a year.
this was all difficult to hear but not entirely surprising as we had pretty much expected it - in fact, prior to this appt, we had already scheduled a tentative in-office appt with DR H for the end of may.)
what we didn't expect to hear and were totally unprepared to hear was to have her clinically diagnose taylor with a co-infection of lyme. we thought we had ruled out the co-infection issue with him
so we were pretty much shell shocked to have her diagnose him with bartonella.
no no no
how can this be?
he was supposed to just have straight lyme
which simplifies treatment and recovery (if anything in regards to lyme can ever be referred to as 'simple')
i was crushed
this isn't supposed to be!
how can it be?
the whole stupid congenital lyme thing is hard enough to swallow
now there is more
when will it end?
forget end - when does it just stop getting worse?
we arrived home from our appointment
the following morning the phone rang
it was taylor's canadian GP on the phone
she was calling to inform us that taylor's canadian blood test for bartonella had come back positive
and this news instantly transported us
had us high five-ing each other
how is it that a dx that devastates one minute can become good news less than 24 hours later?
welcome to the twisted road of lyme we travel!
first it backs up his american diagnosis. i was hopeful it would earn our american docs some credibility with the medical system here. and even though, it doesn't change the fact that he will still need to undergo treatment under DR H's care, it at least gave us the hope that we may be able to get some treatment for him here in canada.
the fight to obtain canadian treatment for first myself and now parker has taken every ounce of our strength and has drained us physically and emotionally. after our last appt for parker with an ID doc, where we spent 2.5 hours heatedly advocating and begging this ID doc to prescribe DR H's treatment plan, we made the decision that we would no longer put ourselves or him through that kind of torment anymore. so we certainly were not planning on even treading that path with taylor. while it is important to advocate for our boys to get the treatment they deserve, our primary priority is to protect them. continuing to expose them to these heated discussions and the resulting attitudes of either blatant hostility or indifference is not in their best interests. in fact, it is detrimental to their and our emotional health and well being.
for these reasons, we accepted that probably parker's and most definitely taylor's treatment would be based soley in the US. no matter what the cost. and in the grand scheme of all things financial, the cost of their meds is minor related to the immense cost the whole of their US treatment costs.
and then along came the bartonella dx
followed by the canadian serological evidence of it
which set in motion the canadian bartonella treatment roller coaster we have been riding for the past 3 weeks
we made an appt with the GP who had the blood test results
taylor's bartonella titre came back very high (meaning it is a raging infection)
however, his GP would not touch him with a ten foot pole
as i started to ask her to prescribe doxycyline (an abx) for the bartonella, she cut me off mid sentence and with finger wagging in my face, she agitatedly shrieked,
"how many times do i have to tell you people, i will not treat you. i don't want to have anything to do with this. why don't you just take him to 'your guy' in california and get him to do something about it."
so much for hoping the Canadian evidence would validate our american doctors in the eyes of the medical profession here. and i want to point out that the doxy prescription he requires to treat his bartonella is not unconventional or dangerous. in fact, it is the same abx at the exact same dose that she would prescribe long term if taylor had acne.
taylor calmly replied,
"i have a canadian positive for a disease i contracted in canada that is fully treatable in canada."
then it was his turn to be the recipient of her finger wagging and irritation.
"how many times do i have to tell you people, i will not treat you." she looked him dead in the eye and said, "i've told you i'm not getting involved. sorry about that but i won't do it. and besides i don't know anything about it."
taylor courageously suggested she do a little reading and learn about it.
by then she was near the erupting state, she stomped her foot and as she opened the door to storm out of the office, she irately added,
"i'm not interested in learning anything to do with this."
am i shocked? no.
just sad and mad. this woman has been - was - my doctor for the past 20 years. she delivered all 3 of my kids. i trusted her to do right by them. i trusted her with their lives.
we left her office with a referral to an infectious disease doctor. i had to ask for and insist on even getting that.
once again, i felt beaten down.
back to being mad and sad about the whole stupid bartonella dx
upset that the stupid serological evidence of it had now thrown us back in the line of fire in the medical system here.
i could not understand why this, why now, why require us to fight for treatment...after all, isn't it enough that we've got one hek of fight on our hands just to get our son's healthy?
i came home from that appt with our GP and posted on my FB status that i am, "too tired, too sick, too overwhelmed, too frustrated, too angry, and too trampled over to care anymore."
i truly felt it but of course, i care...and so we prepared for our appt with the ID doc
thankfully, our appts with the ID doc have been a pleasant albeit totally peculiar experience. while the ID doc will not acknowledge that bartonella can be a tick borne infection, he has at least been kind, respectful and praise the Lord, he has prescribed a 4 week course of treatment. while it doesn't come close to the amount of treatment taylor will require, at least it is something. it is a blessing in disguise that taylor's antibody titre came back so high. fortunately, it was too high for the ID doc to ignore. that, coupled with the fact that taylor has lost 15lbs in short order and his symptoms of nausea, bone pain, fatigue and headaches have profoundly affected his quality of life to the point that he can no longer attend school certainly made for a good case for the necessity of treatment.
what has been peculiar is the fact that anything tick related has been the blatantly ignored pink elephant in the room.
bartonella is a tick borne infection however it can also be contracted from a cat bite or scratch. we were very clear with the doctor in insisting that taylor has no exposure to cats...with the exception of one friend who owns a cat. no one in that home is or has been sick. and from what i've heard, they have been scratched and bitten by their cat. while i've heard that taylor likes to torture this cat (i think it's name is boofy) by belching in it's face, it has never bitten or scratched him. (probably because it passes out every time taylor comes near it) so no, there is no way that boofy or any other cat gave taylor bartonella. however, when i demurely and "naively" asked the doc if there was another mode of transmission, he just silently sat there. so i prompted a response by saying i had heard that bartonella could be contracted through the bite of a tick. the doc shuffled his pen and then nervously replied,
" ummm, well, that is how cats get it."
he then went on to acknowledge that taylor's symptoms are not in keeping with the type of cat contracted bartonella.
i made 2 more generalized statements about ticks.
both of these were ignored.
i decided to leave well enough alone. after all, i suspect, the thought is that it would be more likely to come across a pink elephant in canada than it would be to bump into an infected tick.
and besides, the doc did prescribe an initial 2 weeks of doxy for taylor.
he asked us to come back at the end of that for a follow up
so last week we had our follow up appointment
since starting doxy, taylor's headaches have gotten more manageable and his nausea has greatly improved. when the doc weighed him, we were all pleased to find that he had gained 3lbs. we are grateful the doc acknowledged that this was significant.
after taylor's weigh in, the doc weighed in on what he thought should be the next course of action. given that there has been some improvement, he was willing to prescribe an additional 2 weeks of doxy. i asked him if he would prescribe an additional abx called rifampin. the combination of doxy and rifampin is the standard treatment protocol that a lyme literate/ tick borne disease specialist uses to treat bart and both DR H and DR D have recommended that taylor be treated with this combination. given the pink elephant lolling away in the corner, i didn't come right out and say exactly that. i just suggested that i had been doing some research and had talked to a doctor friend who had suggested that this would be advisable.
this was followed by what i can only describe as peculiar side stepping on his part. i can't figure this guy out. either he has been forewarned about us 'lyme people' by our GP or he wants to help but is nervous that if lyme is brought up and has to be recorded in his notes than that could pose a dilemma for him. at any rate, it is just very peculiar.
but hey, i'll take peculiar over outright hostility any day of the week.
we left his office with another 2 weeks of doxy AND 2 weeks of rifampin.
we'll be following up with him again in 2 weeks.
one step at a time.
in a previous post i alluded to having been living with some massive ups and downs. the bartonella roller coaster, among other things yet to be blogged about, has certainly taken us through some pretty major highs and lows. the bartonella dx is a major downer yet it has helped us obtain some covered medical treatment for taylor. i guess i can consider bartonella a blessing in disguise. and really, it is nothing short of a miracle that taylor was even tested for it - let alone for the results to come back positive. you see, i don't even remember requesting he be tested for it. DR D had requested that we get some basic labs done (blood counts and liver function panels) on taylor and bring the results to our appt with her. the week before our appt with her, i took him to our GP in order to get the lab req. apparently i must have requested she add a bartonella test to the work up. however, i don't remember doing that. not only that, but tick borne co-infections were not even on ours or DR D's radar. so i cannot explain why in the world i would have asked that he be tested for it. all i can say is that it was a total God thing.
there is no doubt about it that the bartonella dx is a tough pill to swallow and in the days that followed it, i questioned just how he could have gotten it. after all, he has been dx with congenital lyme. there are clinical studies and scientific evidence that support that both lyme and babesia are congenitally transmitted. but what about bart? how does it fit in to this twisted picture? i didn't know. i wondered how to make sense or peace with that.
and then, a few days after getting the dx, came this press release from north carolina state university...
BARTONELLA TRANSMITTED IN UTERO
how amazing to have my question so profoundly answered.
another bartonella blessing in disguise.