The thing you aren’t suppose to talk about : money.
I hate to bring this issue up because I feel that talking about money is rude, but I want everyone to read this post and what the costs are, other than the dehabilating health issues I have faced. These costs can be avoided to you if you are aware of Lyme disease, know how to prevent it, know what to look for in symptoms and most importantly find a doctor that is LYME LITERATE.
As I have mentioned in a previous post, many Dr’s will only give you either a single high dose of doxycycline, or a months worth, which is not enough, especially if you are not sure when you were bit. Going to a Dr. that is lyme literate is worth it. Spending the few extra hundred dollars it might be out of pocket and 3 months of oral antibiotics (doxy runs around 30-40$ a month without insurance) if you catch it early enough is much better than what it has cost myself and my family, out of pocket.
I am so fortunate to have help from my parents, as I would be absolutely screwed without them. I hate myself for having to take money from them, as I am 26 years old, but the costs have been completely overwhelming, and Dave and I “get by” on what we do make every week.
My Mother just turned 60, but has not worked in about 12 or 13 years due to her mental illness. My Father makes a decent living, but he is also almost 60, so I feel terrible and feel like I am leeching away their savings and my Dad won’t have a chance to retire when he wants to because I cost them so much money.
I feel horrible for all the sick people out there that do not have the support that I do and can’t get the help they need to get better, and there are a lot of people like that out there.
Lyme disease is not covered past 30 days of treatment. I highly recommend that everyone watches the film, “Under our Skin”, a movie about lyme disease, (free on Hulu) as it will explain all the politics and reasoning as to why treatment is not covered. I will explain further in another future post, but I recommend watching the film either way, as it really brings awareness to Lyme disease.
It makes me sick and makes me so angry that the insurance companies will not pay. Thank you politics and the CDC for not being willing to acknowledge this illness, although they technically do, they just don’t want to pay. When I first got sick, I did not have health insurance and went to a local insurance place to figure out what I could do to get health insurance, as I knew it would be better to have as I knew although it wouldn’t cover actual antibiotics, it would cover expensive bloodwork, tests, etc.
Two of the major insurance companies in NH, I won’t use names… one company wanted to charge me just over 600$ a month (this is just me, NOT including my husband). Who the heck can afford that? The other major company, I got a denial letter in the mail with big lettering that said “Reasoning : LYME DISEASE”. Hmmm… they DO know that treatment often requires longer than 30 days and this disease can affect every single system in your body. They know it will likely be expensive. As you can tell my writing, I have an angry tone as I think it is ridiculous and one day I can only hope that everyone will be on the same page.
Fortunately, the gentleman at the insurance place found a state program that I fell into, because I was denied by that other carrier. It was still 300$ a month for just myself, but it has definately has helped tremendously, as it covered a lot of my testing, bloodwork, PICC dressing changes, (weird, they cover dressing changes but won’t pay for lyme antibiotics… go figure), and helped out with a lot of my prescriptions that are not antibiotics. Since then, I have just had to switch insurances, this time to a federal insurance company, which happened to be a little cheaper, for people with pre-existing conditions. Since according to the government Lyme is not a long term disease, I could use my other laundry list of ailments and was able to qualify.
To break it down for you what I mean by overwhelming costs, and this WAS NOT COVERED BY INSURANCE!
– In 2012, my first 4 months of treatment, from September through December, my parents forked out exactly $7,481. This included my visits to Dr. S, Dr. N, my antibiotics, supplements, and other necessary treatments such as lymphatic drainage for detox and circulation massages. By the way, these are not fun spa-style massages, they are therapeutic and most of the time hurt like a bitch.
– I have paid out of pocket just over $2,000 ( I know I sound like a piece of shit for paying way less, but I only work 25 hours a week tops, and obviously at 26 years old didn’t have a giant “oh shit” fund kicking around)
– So far this year, my parents and Dave’s parents have paid just over $13,000 for my treatments. And I have not even begun treatment in DC yet.
– I owe the hospital, which I am making monthly payments on, just over $3,600. This might end up being over $11,000, as my old insurance company approved several tests supposidly but the hospital keeps sending me letters that they have not paid them, making me responsible . Let’s hope this isn’t the case!
The woman from the clinic called and told me a little bit about their IV treatments and also told me that I would be getting a letter for advanced notice of IV treatment fees and I would have to sign and mail or fax back. Already going through some of this before, I already knew it was going to cost a shit-ton of money, but they probably have had any people get PICCS and chest ports then not have a clue as to how much it was going to cost and get angry so this saved them from it as it was advanced notice. It stated that monthly IV treatments could cost approximately $3,200 to $6,890, and a 7 to 9 month course estimated out of pocket costs can be approximately $40,000. Yowza!
My future supplements and medications (a portion is paid by insurance but most is not) that I know I will be on for the course of IV treatment: my B12 shots, neurotropics, and array of other supplements and vitamins, costs me roughly $488 a month. A say roughly because a few of them last me just over a month, or two months, so this is an average monthly breakdown of these items.
This brings me up to a whopping $69,585 of out of pocket costs, not including travel expenses associated with traveling to DC every month and I will likely be on some sort of regimen after my new IV treatments are completed. They aren’t just going to take the line out, take my money, and tell me to take hike. There will be maintenance. My insurance has paid since I received it in October $49,127.05 so far, and I know they will pay thousands more as they will continue to cover my future bloodwork, dressing changes, among other things.
A grand total of $119,112.05. Not including whatever is in my future after DC. Not including my traveling expenses to see a Dr. that can do what I need to get better, my expensive insurance that doesn’t include my husband, and the thousands my insurance will pay for. Still think lyme disease is a joke?