March 26, 2009

TRACKING DOWN ALINIA


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
do both
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.


10 comments:

Renee said...

Oh, I enjoy your posting so much...I laugh, I cry, and I learn...alot!
I too and fighting babs and on Mepron and Zithromax for now..my liver, gallbladder and stomach rebelled and I had to go off Doxy and lower doses with the others for now, but I sure related to the symptoms you mentioned here...It seems the drug combo I am on also is killing Barts..I have not heard of the med you mentioned but will look it up. Out of pocket is difficult enough without the high cost of drugs too!
Your deep trust in the midst of such a fierce battle gives me strength for my own.
Bless you.
renee

Renee said...

PS: Have you ever taken Metagenics Ultra Clear Plus and Advaclear to help the liver ~ castor oil packs over my liver and stomach area.

s. said...

yup, oil up before bed each nite...so lovely!

thx for the supplement info...i'm not on metagenics per say but dr h has me on a ton of stuff for liver/organ support - looks like it's pretty much the equivalent - just a different brand

Renee, how are you finding the herxing on mepron/zith combo? mine were incredibly powerful and horrible to endure HOWEVER totally worth it b/c this combo resolved a lot of my symptoms - hope you are hanging in - you are in my thoughts and prayers

s.

PJ said...

You also seem to articulate something exactly like i'm feeling it - sometimes even before I know I'm feeling it!

Renee said...

Hi
I fogot to come back and check your comments here....
I do find the mepron and Zithro combo tough to endure with alot of pain, muscle cramps, wild dreams, and more that I cannot think of right now. I am only taking it 2 weeks of 4 now due to stomach and liver issues, BUT this week I will up the dose to 1/2 tsp. Mepron with 1/2 zithro pill 2x a day. I am sure symptoms will increase. The pain makes me weaker and that is hard, BUT still I felt a sense of more body strength that I knew was different? Does that make sense? Something is changing and for the better and I am all for that.

Michael said...

Hi.

I'm not sure this can help you, but i bought my Alinia through a reputable canadian pharmacy online. I received it from them (to the US) via their supplier in India.

It was significantly cheaper.

(I see Dr. H as well)

s. said...

Hi Michael
thx so much for the info - i am using an online pharmacy too...is it the non-generic of alinia (called nizonide) that you are getting for cheaper?

s.
here's my email if you prefer - sngoertzen@shaw.ca

Ticked in Manitoba said...

Hi Enjoyed your blog...I feel your pain AND frustration. I have just endured the whole Aliniaand Ivermectin 'Dog and Pony' show. The drugs are distributed from langley B.C. here in Canada, but Health Canada doesn't accept us using them here. I got some sent to a U.S. address and after about 1-1/2 months of said drugs travelling around he world, they arrived in the U.S. I picked them up and brought them home and am having good success on them!! I go them at a reasonable price, but again, took a long time. It seems like our own Gov't is trying to hamper, rather than help us??? Keep on posting!!! Wayne

Holly Ward said...

I am so happy that I found your website! I got diagnosed with babs/Lyme from a tick bite in northern cali this April 1. Hit my neurological system super hard. Had seizures in front of my students and rapidly started losing speech, hearing, organ function, motor control. My husband's great aunt in n. Alberta remembered a family friend who happens to live ten miles from us in Bay Area sent me to pacific med(is that your Dr H?.). I amabsolutely convinced they saved my life. They discontinued my doxy from family MD, started me on Zithromax, omnicef, and mepron($2000 out of pocket after insurance, thankfully, on my third script and insurance has finally kicked in). I responded immediately bt crashed three days later from neurotoxin buildup. Loaded up on binders(first psyllium husks, immediately helped and started to regain health swiftly). Started Alinia two weeks ago. Within one hour of taking, started losing speech and brain slowed down. Scared our whole clan. The next day got a little better and so on. Drs increased binders which I know have helped, activated charcoal and intestinal drawing formula( I'm tolerating well). The worst that I am seeing is some herxs(thanks for the note reminding me that's progress), and lymph node buildup. Drs have me doing skin brushing at night and I think that's super helpful(thank God for my dd who volunteers every night!). Next phases to lean out scar tissue in body to get rid go lyme/babs buildup. Quick question, have you heard of transmitting babs to your kids? I have five children and that is a real concern. Dr hasn't mentioned it and it just occurred to me. Great luck with your meds and I'll send prayers your way!

Holly Ward said...

I am so happy that I found your website! I got diagnosed with babs/Lyme from a tick bite in northern cali this April 1. Hit my neurological system super hard. Had seizures in front of my students and rapidly started losing speech, hearing, organ function, motor control. My husband's great aunt in n. Alberta remembered a family friend who happens to live ten miles from us in Bay Area sent me to pacific med(is that your Dr H?.). I amabsolutely convinced they saved my life. They discontinued my doxy from family MD, started me on Zithromax, omnicef, and mepron($2000 out of pocket after insurance, thankfully, on my third script and insurance has finally kicked in). I responded immediately bt crashed three days later from neurotoxin buildup. Loaded up on binders(first psyllium husks, immediately helped and started to regain health swiftly). Started Alinia two weeks ago. Within one hour of taking, started losing speech and brain slowed down. Scared our whole clan. The next day got a little better and so on. Drs increased binders which I know have helped, activated charcoal and intestinal drawing formula( I'm tolerating well). The worst that I am seeing is some herxs(thanks for the note reminding me that's progress), and lymph node buildup. Drs have me doing skin brushing at night and I think that's super helpful(thank God for my dd who volunteers every night!). Next phases to lean out scar tissue in body to get rid go lyme/babs buildup. Quick question, have you heard of transmitting babs to your kids? I have five children and that is a real concern. Dr hasn't mentioned it and it just occurred to me. Great luck with your meds and I'll send prayers your way!