Hi my name is Carrie and I have chronic Lyme disease-and I'm pissed off about it. Not at being sick per say-but the fact that I, like so many other people who suffer from this disease, have been denied adequate treatment.
Why I'm fundraising
I am about to start my third course of treatment for Lyme disease-yes you read that correctly. I have done 2 courses of treatment previously, and in my mind have been severely undertreated. I now have an appointment to see a specialist, or what we refer to in the Lyme community as a Lyme Literate MD and I'm overjoyed at the prospect of FINALLY getting proper treatment! There's one tiny problem however, and that is LLMD's aren't currently taking insurance. Why you ask? It's because these doctors have chosen to treat outside the current guidelines which state that Lyme disease has no chronic form and is easily treatable with a few weeks of antibiotics. Clearly in my experience-along with countless others-this is not the case. Luckily, there are compassionate doctors out there who've seen the light; unluckily, their recognition and treatment of chronic Lyme disease has cost them their relationship with health insurance companies. The result of this split is that it's expensive, and I mean really expensive, to see a LLMD-and this financial burden falls entirely on the patient-who is required to pay for treatment out of pocket.
I have done my research and made an appointment with a doctor I believe I can put full confidence in. However, my initial treatment bill will look as follows:
Cost of initial visit: $700
First visit lab tests: $1,200 give or take
Montly follow-up visits: $250
Meds & Supplements: Depend on diagnosis, etc, etc
I do have something called out of network benefits built into my insurance plan and thus can get partial reimbursements for my expenses. My hope is to raise enough money to get over the initial financial hurdle, begin treatment as soon as possible, then continue to recycle the money that I'm reimbursed and use it for further medical expenses. If you're doing the calculations and $2,500 seems a bit high, that's because when this course of treatment is all said and done, I'd like to donate whatever money is left over to a worthy Lyme disease organization. In short, any and all money donated to this campaign will go to Lyme disease.
The Impact
Unfortunately Lyme disease is growing at exponential rates-with the number of new cases reported getting higher each year. In my area of the US you can't even utter the words Lyme disease without hearing about how someone's cousin, neighbor, sister-in-law have it. This disease isn't going away-in fact it's growing and continuing to affect more people each year.
It is crucial that the medical community change their stance on treatment practices and policies regarding Lyme disease. This disease is treatable if addressed early and aggressively enough. However, people continue to go misdiagnosed and/or as in my case, undertreated. I do think that eventually things will change and as more people are sick and finding it hard to get proper treatment that the infectious disease powers at be will have to listen. For them to listen however, we first have to make some noise!
