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.

FB Jan302015

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.


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.


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.



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