The Cost of Getting Welling Well: One Year In

With a long term illness, there are so many mile markers. At the end of January, I passed the one year mark of being treated by an LLMD (Lyme Literate Medical Doctor).  I’ve now been debilitated by Lyme Disease for 17 months. The four month gap of September 2014 through January 2015 was spent “waiting to get better,” as advised by an ignorant Infectious Disease doctor. At the end of January 2015, I sought out an LLMD, knowing that it could be a very expensive undertaking, even with insurance, but understanding that it was what I would need to do in order to have any chance of getting my health, and therefore my life back.

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My Facebook post from the end of January 2015, after my first appointment with my LLMD. Little did I know…

When I last wrote here about the cost of getting well, I was only two months into my treatment, but was already learning how devastating the cost can be. As of that post, I had spent $800 out of pocket on my care. $400/month for medical treatment, when one has good medical insurance isn’t a joy, but it certainly isn’t the worst case scenario. After a year of treatment, during which I have felt that our money has been flying out the window faster than I could watch it go, it’s time to tally up the damage and share what Lyme care with insurance really looks like.

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Grand total for out of pocket cost of one year of Lyme Disease treatment WITH good health insurance

$8,200 for one year of treatment. That averages out to about $680/month. My doctor’s visits are covered by insurance, and I am only responsible for antibiotic co-pays. This is IV nutrient treatments (which have run from $100-200 each, depending on where we were at with my treatment), probiotics to keep from becoming a walking yeast infection, vitamins that my body is very deficient of, supplements that keep some of my debilitating symptoms at bay, the acupuncture that I did for several months at the beginning of my illness to help ease some symptoms, prescription co-pays, taxi fare to appointments that I wasn’t well enough to drive to when my wife couldn’t take me, blood tests that were not covered by insurance – you get the idea.

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Receipt from yesterday’s doctor visit: co-pay, supplements, uncovered labs

I would also like to reiterate that while I have added the expense of nearly $700/month for my medical care, I have also been too ill to work, so I have LOST A YEAR’S WORTH OF INCOME.

The financial aspect of Lyme is a huge stressor, and we have absolutely no idea when or if it will ever end.

Still, I am fortunate. My family has a roof over our heads, and food on our table. We have good insurance which covers most of my care. With less comprehensive insurance, or if I had gone to an LLMD that does not accept insurance, as many do not, the total would easily be two to three times as much.

This is the financial reality for chronic Lyme patients. Many patients have to halt their treatment altogether due to inability to pay. Even as a fortunate person who is not going bankrupt from medical bills, I have had to say to my doctor more than once, “I can’t [fill in the blank]. We just can’t afford it.” My IV treatments, which are supportive for my struggling immune system, are now $200/each. It would be very beneficial to my recovery to have these weekly. I did get them weekly for a time, while I was getting the antibiotic Butt Injections of Doom, but I don’t have the funds to continue that pace indefinitely.

After some very disappointing blood work results, showing my immune system and overall health to be really struggling, my doctor and I are now working on a plan to pick and choose the most beneficial components of the IVs, so that I can get them biweekly for a little less cost. I’ll resume vitamin B injections at home, as the cost of those is minimal. We are switching up some supplements to try and replenish my reserves. Today, I’m going to sit with a calculator and figure out with the amount of pills in each different bottle, and the number I take each day, how much it will cost per month for me to continue each supplement, so that we can figure out which are most important, and which will fit the budget.

At this point, my doctor has stopped offering hypothetical timelines for my recovery. This is indefinite. This is life with Lyme.

 

My herx will go on…and on…

Another update from the trenches! I swear, I do have somewhat cheerier posts in the works that I’d very much like to share here, but lately the most negative bits of life with Lyme have been running the show.

Since resuming oral antibiotics a few weeks ago, I have been on a roller coaster of flaring symptoms. First came that all too familiar ice pick headache and the usual fatigue. Next, another blast from my Lyme past – flu-like full body aches! These were a staple of my early Lyme days, but I’d been without them for months. I am now on my 20th consecutive day of aching all over. These aches gradually increase in intensity throughout the day, until I feel I can hardly move at night. My new vitamin regimen, which helped assuage my neuropathy (nerve pain) in the right side of my body, evidently holds no candle to the mayhem-wreaking power of antibiotics. The familiar buzzing pain throughout my right side as returned with a vengeance. Joint pain in my wrist – now making even adult coloring books too strenuous. An anxiety flare that kept me in bed for an entire day, feeling like my heart would burst from chest, and unable to keep from sobbing until I wore myself out and fell asleep? CHECK. Returning brain fog, robbing my ability for small talk, leaving me staring blankly at people talking to me? Check. Fatigue that makes naps once again a daily necessity? Check.

So, yeah, it’s been real. To be fair, there have been one or two days that I’ve felt okayish-good.

In the midst of this shitshow of horribleness, I contacted just my doctor, just to say, “Hey, I know I’m not dying, but is sure feels like I am! FYI! Have a nice day!” She was kind enough to call me up for a chat and review all the gory details of what I was in the throes of. She said, “Okay, this sounds like CLASSIC bartonella. Are you okay now? Good. Because it sounds like these meds are really doing something for you, and that’s good.”

I know that may not sound very helpful. But I always suspected from the beginning of this whole Lyme mess that one of the co-infections I had was bartonella, simply based on its most common symptoms. The available blood tests for co-infections are basically garbage, so in many cases, patients don’t find out which co’s they have until a treatment that is often used for a particular co-infection seems to help them. It’s more of the usual trial and error Lyme treatment game. So honestly, just the glimmer of possibility that I am on a good combo of drugs that are killing something awful that’s still alive in me is pretty comforting.

Oh but wait – I entitled this post about herxing. So basically, I’ve been on a long and winding herxheimer reaction since starting these drugs. That’s what everything above boils down to. And it’s still happening. Everything hurts all of the time, and hopefully soon it won’t. It’s making me kind of crazy, but I am hanging in. The end.