the road i have travelled thus far on this journey has required me to take a crash course in hands on medical care. whether it is navigating the medical system or learning the ludicrous terminology associated with pharmaceuticals; learning to reconstitute and administer IV meds or self inject; learning to know whether or not the symptoms you are experiencing warrant a trip to the ER or learning the difference between faux herx or real herx; yup, you name it, i've either been there, done that or at the very least i've obsessively read about it.
to be frank, for all that, i think i deserve a title! nothing major. just a few initials to punctuate the end of my name with. for all the medical lingo and care i've had to take on over the past 3 years, not to mention the fact that the word herx aka jarisch herxiemer is even in my vocab, i figure i've quite easily earned, at the very least, an honory RN after my name.
and as easily as i've earned an honorary RN after my name, my dear husband surely has earned the title of PI. Yup for all the sleuthing it takes him to track down my various medications, supplements and IV supplies he most deservedly could add "Private Investigator" to his resume.
par for the course when your medical care is coming from a different country than the one you reside in. more often than not, it not only takes countless hours but even days or weeks to finally get suppliers nailed down and prescriptions filled.
alinia has been the latest mystery drug we've had to track down.
when i saw DR H in january he attributed my low scoring neurological assessments along with my blurred vision, shortness of breath episodes and a sudden increase in migraines to a raging relapse of babs. his clinical evaluation of me, made it clear the babs infection is deeply entrenched in my brain and building strength and resistence to treatment. So, in addition to the IV Rocephin i am on to fight my lyme, DR H immediately started me on the IV form of zithromax and prescribed the Alinia.
(Lyme is a bacterial infection whereas Babesia is a protozoanal infection. my babs infection attacks my eye sight, lungs and hearing in addition to being the causative of my neuropathies, mood swings, headaches, chills and nite sweats. learn more about babesia here- http://en.wikipedia.org/wiki/Babesia)
Bottom line, we have to gain control of the babs. Babs can be fatal. It is do or die.
upon our return from seeing DR H in SF in January, i immediately met with my Canadian doctor, DR A, to get DR H's American prescription for the alinia 'converted' to a Canadian prescription. Doing this allows me to fill my prescriptions in Canada which in turn means that they are then (generally speaking) covered by insurance. DR A was in agreement with the DR H's latest treatment plan however he was pretty sure that Alinia is not a drug available in Canada. Nonetheless, and hoping for the best, he still wrote the prescription and off I went to the pharmacy to fill it.
dead end. alinia is not available in canada
which leaves me with 2 options
either find a suitable alternative or fill the prescription in the USA and pay out of pocket for it.
we've run into this problem before and DR H has often been able to prescribe an adequate or close to equal alternative. No such luck with Alinia. There is no 'Canadian' alternative or option left for me.
the first line of defense against babs is an oral course of mepron (an antiprotozonal drug aka atovaquone) and the oral form of zithromax (an antibiotic). these meds are available in Canada. however, i've already done this combo. i did make great progress while on this combo but it did not eradicate the infection. therefore, the use of alinia is warranted and necessary. And DR H is adamant that I need to be on this drug.
so we've had to go with option 2. fill prescription in the USA and pay out of pocket for it.
to the tune of $1500 per month. duration unknown. gulp.
the clincher is that alinia is made in canada...add insult to injury it is manufatured in a lab that is located in a suburb of the very city we live in!
what to do?
laugh or cry
then bite the bullet
hope the mastercard is not declined
trust God for His provision
we did try submitting our receipts to insurance. we were hoping they would cover the alinia because i had a canadian prescription for it. however, we recieved word this week that our claim had been denied. not sure how we are going to float this. we're pretty much financially maxed out. for the time being, in order to make wiggle room, we have had to cut back on some other aspects of my treatment. namely my detox regime.
i'm trying hard to remain upbeat, keep trusting God for his provision and not be completely overwhelmed. after all, God is in control. and, you know, things could be worse. i have a lot to be grateful for.
and there is always something to laugh about.
this 'saying' was on the packing slip that accompanied my first shipment of alinia....
"Your prescription has been taken from our prescription shelves with sterilized contamination-free gloves and placed onto a satin pillow. A team of 50 employees inspected your prescription and polished it to make sure it was i the best possible condition beforemailing. Our packing specialist from Japan lit a candle and a hush fell over the crowd as she put your prescription into the finest lined box that money can buy we all had a wonderful celebration afterwards and the whole party marched down the street to the post office where we all waved 'Bon Voyage! to your package. Thank you for your order."
Seriously. No joke. That little note came with my multi-million dollar bottle of Alinia.
If I didn't know better I'd think my husband worked for this pharmacy.