Sunday, June 12, 2016

From Lyme to Emerald

I want to give you a glimpse into the financial crush of treating Lyme and its Co-infections (Anaplasmosis, Bartonella, Babesia.) A good writer shows, not tells. 

The figure below shows the cost of the loathed anti-viral Mepron, you know, the one I complain about all the time- the foamy yellow liquid that comes up as often as it goes down.  I go through a 750 ml bottle about every 1.5 months. The bottle costs around $3,000, which means every time I throw up a teaspoon, it costs me around $100. That's some serious incentive to swallow. 

Insurance has paid a good portion of this medication until now. It's arbitrarily decided it is done with the Mepron. Oh, Blue Cross Blue Shield of North Carolina, I wish I was done with it, too. 

I would like everyone who has donated to my medical expenses or shared my blog online (a huge help) to see a concrete example of what Lyme patients are up against, and how you are helping to afford the treatment that is saving my life. Yes, Lyme does kill people. It works its way into the heart and it kills. I have a tendency to be hyperbolic but when I say that you're saving my life, I mean it. And many of you have never met me outside of the internet : I think you are especially astounding. 

Here is something I wanted to share today. My hometown of Woodstock, Vermont, led by an incredible woman named Leanne Velky who went to elementary school with me, has created a raffle (and created that lovely event banner) to help me afford the exorbitant cost of treatment. You can check out the items and buy tickets here. 

The enormous, life-altering swell of gratitude that I feel towards everyone involved: Leanne, Woodstock, Simon Pearce Glass, the massage therapists, the creator of those beautiful sea glass and pearl pendants and everyone who has donated to help me fight this monster of an illness....that is a different post for a different day. Some of it is private and belongs only inside the thank you cards that I am writing out every single day. 

I don't want to be an astronaut on the moon anymore. I want to go home and not feel sick all the time. I want my eyes to clear up and my hands to stop shaking and my pulse to stop bounding and this fever to be gone. I want to wake up and not be scared. I want to give David a break from this because he needs one. I want to be healthy enough to have a baby one day, and not be wracked with fear that she will be born with Borrellia already drilling holes inside of her. 

For now, I am going to swallow my morning's worth of the killing regiment: Mepron, Omnicef, Septra, Enula, Lactofernin, Artimisinin and Xylitol, and keep hoping. 


Leanne Velky said...

OMG you're so sweet. I'm honored to have even the smallest piece in your recovery. We got some truly awesome gifts and everyone was SO willing to help out!! Also - that pricing chart is absolutely INSANE. You're right - serious incentive to swallow! As always, sending you love and hugs and strength, my dear. xoxo

Ashley @westiswild said...

How can these drug companies justify these prices? Makes me sick. My son is on a med, for most of his young life, that costs up to $40,000 a year. It's on the "most expensive drugs" lists. Our government (military) insurance covers it for $20 copay, while other families we know of pay thousands a month, and every time I get s delivery, I feel so very guilty. How is it than in such a country, insurance determines the haves/have nots? Does Mepron have a discount program?

SkittleSkattle said...

Move to France! The healthcare is so much better and so much less expensive! You can just pay out of pocket and it is so much cheaper! My son cut his head one day in France - he was transported by ambulance, was attended to in the ER, was given 3 stitches and medicine and it cost 36EURO! For the whole entire thing! That's like $20! It sucks here for healthcare. I'm so sorry for you.

Caitlin said...

mepron has a discount program if you can qualify. i find it easier to get meds without insurance and ins doesn't cover llmd either. i have mission charity care for everything else. anyway, the program is called bridges to access. there are manufacturer's discounts depending on proving low income. you can do this for the others too. i think we may have the same doctor as i am on ur protocol. i think it's actually better not to have insurance or get medicaid because then you actually pay more. this is such a mess... thanks for raising awareness <3 healing vibes