Lets talk money-why lyme patients fundraise

First, know this, in the Lyme world patients don't go to the doctor and then get billed like when you go to the emergency room.  Lymies can't make payments, can't save the bills for later, can't ignore the bills are there.  These things are only possible when visiting medical professionals in the regular world.  In Lyme World we don't get seen, don't get tests done, don't get medicine without cash up front.

The first few visits to a Lyme Literate Doctor are the most expensive.  The appointments are longer and you have to pay for testing.  Not only this, most of us have to pay to travel.

My first visit, not including costs of travel, $750.
My testing, $1100
My second visit, $500

Then like other Lymies, it's time to begin treatment.
Monthly appointments, $250
Monthly medicine copays, $200
Probiotics and other supplements, $200

Let me add that up for you, $650 a month.  That's only as long as I have insurance.  I won't even begin to discuss medicine costs not covered by insurance.  Ok, maybe I will.  The two meds pictured below are $4000 total if I didn't have insurance.

That's not all.  Lymies often are unable to work.  The most important part to healing is resting and reducing stress.  Physical exertion, stress, and over stimulation can cause worsening symptoms.  Along with this treatment doesn't take months, it takes YEARS!

If that's not enough, very often lyme is found in more then one family member.  Although I am trying to focus on me when I blog, I've warned my family that I will be mentioning them at times.  It is so important for our society to understand the struggles of this disease!

Lyme can be passed on through pregnancy and nursing.  Both of my daughters have multiple symptoms that they have had their entire lives and that are clear indicators of them catching lyme as fetuses. I have spent my years mothering teaching them pain and discomfort is normal and it was their jobs to learn to function despite it.  How would I know any different?  I have been suffering from symptoms my whole life.  They would complain of the same symptoms I had.  I thought everyone felt this way and that we just had to toughen up.  Sad, Sad, Sad, it is inexcusable that they suffer even a little.  I've done a good job, a lot of you have no idea that these beautiful ladies have issues with pain, fatigue, and other symptoms associated with lyme.  So, let's talk the cost of that.  We won't include costs of traveling. 

Initial visit with pediatric lyme litterate doctor, $950x2

Testing:$1000x2

Follow up visits every other month:,$350x2

We will underestimate copays on meds, they aren't as sick as I am, $75x2 

Probiotics and Supplements: $200x2

Feeling overwhelmed yet?  I'm still not done.  The verdict is out as to whether or not lyme is an STD, BUT there is evidence pointing in that direction and some lyme docs will tell you it is.  Either way, the process of searching out a diagnosis for me led to us looking at my husband and many of the symptoms he is plagued with.  His list is ALMOST as long as mine.  In fact, he is where I was at five years ago when looking at symptoms.  We lucked out and found a llmd close to home who takes insurance.  I'm not seeing this doctor because he is unable to treat as aggressively as I need.  He needs to tote the line because he bills insurance and we live in a state that doesn't protect lyme literate doctors from having insurance companies bring them before the medical review board.   We are hoping that we have caught things early enough that a less aggressive approach will be effective.  

So, we will estimate copays for meds and doctors appointments at $100 a month.  

Testing was $250 (we did just the basic lyme test. Any co-infections will be treated based on symptoms)

Probiotics and supplements, $200

Ok, it's time to add it up.  The cost of our family to get life saving treatment is, $1,850 a month.  That is after a down payment (testing and initial appointments) of: $6,400!

This isn't just my family.  This is many families in our community.  So many parents are selling of possessions, downsizing their homes, working multiple jobs, just to keep their children and spouses ALIVE.

This is why we fund-raise.  

Every year our taekwondo studio raises money for a cause.  I bet you can guess what we are raising money for this year!  Not just for my family, but we will help a couple of other families in our community who have multiple family members fighting lyme.  We will do this not just this year, BUT EVERY YEAR!  There are so many great causes, but for me this is personal.  Our government can pay for so many things: welfare, foodstanps, housing, insurance, drug treatment, therapy....I'm not knocking this.  I won't lie, I will be utilizing some of these resources.  My issue is I am guessing many of our society members who are to sick to work for various reasons , have lyme.  Our government is denying chronic lyme exists and states lyme is easy to diagnosis and easy to treat.  I'm living proof of the opposite.  I have been told multiple times in the past twenty years that I don't have lyme.  After shelling out tons of cash I finally get a test back that says I unequivocally have lyme AND coinfections.  There are hundreds of thousands of individuals who know differently then what our government wants us to believe.

So, when you see posts and blogs and fliers concerning lyme fundraisers, give a few dollars.

  The last great thing I want to share with you about lymies is that we ALWAYS GIVE BACK.  We don't just take and take, we turn around and help each other because we are the only ones who have each others back.  Support us, because you may very well find yourself in our shoes some day in the future.  I promise, we will help you.