*Originally published 8/15/18*
$7,298.66. This is (about) the amount that my family and I have spent for my treatment so far THIS year-this is over 3 times my college tuition at the moment. This is nothing compared to the $63,000 we had to spend in just one year on my second PICC line. We have been doing this for over 6 years now. Just think about that. And we are some of the lucky ones. I know Lymies who have lost their homes, cars and other possessions just to afford their treatment.
Just think about all the things this money could have gone to: schooling, food, trips. But no. This money is now gone, spent on countless doctor visits, pills and any other medical costs that we might have had in order to make our lives tolerable.
No one should have to go bankrupt for just trying to save their life, but with Chronic Lyme Disease, that is often the case. Most Lyme doctors do not take insurance. First appointments can range anywhere from $500-$1500. I have had 5 “first appointments,” having had to switch doctors several times. Then after that blow to the credit card, each follow up is normally over $250; with most LLMD’s you have follow-ups every few weeks for months, or even years. That all adds up.
Then, add on the medicines, and your s*** out of luck. At one point, I was taking over 60 pills a day, and each prescription ranges from $10-$30. Then you have the herbals. Now, herbals are not covered by insurance in any way. You can have herbals that are $10, but you can also have the ones that are $90. And if you are taking an extensive amount (like most Lyme patients have to) you will have to get more every two weeks. Can you imagine paying for that? I can’t, and we’ve been doing it for years.
Right now, I am starting a new protocol with my doctor since my paralysis has come back. This treatment requires me to go in once a week for the next 5 weeks, then once a month for the next 3 months. Each appointment is going to be a minimum of $240. That is $1200 in 5 weeks. You may be thinking “well, why the heck would you do that?” and my answer is simple: I am all out of options.
As I lay here barely able to keep my eyes open, shaking uncontrollably I think “is this working?” “is this just a herx reaction, or am I getting worse?” With Lyme, you never know. You can spend thousands and thousands of dollars on something that may not do a gosh darn thing to help you, but you didn’t really have a choice. There is no cure. There is no mapped out treatment plan. No one knows what will work, and what won’t. Your whole existence is just a trial and error basically. Can you imagine that? You’re just a test animal getting poked and prodded. You get pills shoveled into your system and you just have to sit there and wait it out and hope this attempt is successful. But unlike test animals, you have to pay a pretty sum for this treatment.
I am desperate to get better, and so are many of my lymie brothers and sisters. We do not enjoy going to the doctors all the time. We do not enjoy taking pills all day every day. And we certainly do not enjoy the financial burden that this disease puts on our lives. But it is what we are forced to do. Is it right? No. should it be this way? Heck no. But unfortunately, until some major legislative changes are made, this is the sick (literally) world we have to live in.
We have been doing this for over 6 years now. Just think about that. And we are some of the lucky ones. I know Lymies who have lost their homes, cars and other possessions just to afford their treatment.
Just think about all the things this money could have gone to: schooling, food, trips. But no. this money is now gone, spent on countless doctor visits, pills and any other medical costs that we might be faced with in order to make our lives tolerable.
No one should have to go bankrupt for just trying to save their life, but with Chronic Lyme Disease, that is often the case. Most Lyme doctors do not take insurance. First appointments can range anywhere from $500-$1500. I have had 4 “first appointments,” having had to switch doctors several times. Then after that blow to the credit card, each follow up is normally over $250; with most LLMD’s you have follow-ups every few weeks for months, or even years. That all adds up.
Then, add on the medicines, and your s*** out of luck. At one point, I was taking over 60 pills a day, and each prescription ranges from $10-$30. Then you have the herbals. Now, herbals are not covered by insurance in any way. You can have herbals that are $10, but you can also have the ones that are $90. And if you are taking an extensive amount (like most Lyme patients have to) you will have to get more every two weeks. Can you imagine paying for that? I can’t, and we’ve been doing it for years.
Right now, I am starting a new protocol with my doctor since my paralysis has come back. This treatment requires me to go in once a week for the next 5 weeks, then once a month for the next 3 months. Each appointment is going to be a minimum of $240. That is $1200 in 5 weeks. You may be thinking “well, why the heck would you do that?” and my answer is simple: I am all out of options.
As I lay here barely able to keep my eyes open, shaking uncontrollably I think “is this working?” “is this just a herx reaction, or am I getting worse?” With Lyme, you never know. You can spend thousands and thousands of dollars on something that may not do a gosh darn thing to help you, but you didn’t really have a choice. There is no cure. There is no mapped out treatment plan. No one knows what will work, and what won’t. Your whole existence is just a trial and error basically. Can you imagine that? You’re just a test animal getting poked and prodded. You get pills shoveled into your system and you just have to sit there and wait it out and hope this attempt is successful. But unlike test animals, you have to pay a pretty sum for this treatment.
I am desperate to get better, and so are many of my lymie brothers and sisters. We do not enjoy going to the doctors all the time. We do not enjoy taking pills all day every day. And we certainly do not enjoy the financial burden that this disease puts on our lives. But it is what we are forced to do. Is it right? No. should it be this way? Heck no. But unfortunately, until some major legislative changes are made, this is the sick (literally) world we have to live in.
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