My LLMD thinks it may be time to start IV antibiotics.
My biggest fear, other than a PICC line of course is that I literally won't be able to afford it!
My LLMD says that she would trial me on IV for a few weeks in the office, which I guess involves going in about 3x per week for infusions.
Then if we were seeing progress we would do the PICC line.
I am waiting for the office to send over the costs and information, but my head is spinning, I wasn't prepared to face all of the costs and logistics of IV treatment yet.
For those of you who are on or have had IV treatment, what is the general cost? I know there will be a cost for every time I need to go into the office for the infusions, and then an entire separate set of costs associated with a PICC line.
I know there are many factors, such as which types of drugs are being used, how many times per week, etc...but in your experiences, what had IV treatment costed you? and has insurance covered anything?
What if I literally can't afford it!? Just suffer forever!?
Posted by droid1226 (Member # 34930) on :
So a picc line is around 1000 bucks if you're insurance won't cover it. Supplies through infuserve are 200/300 month. And antibiotics have a massive range from 5 bucks a vile to hundreds. Maybe rocephin is the way to go. That's 4 to 5 bucks a pop. You might need 4 a day though.
I paid my nurse 50.00 a week until I just started doing it on my own. That was without insurance.
Your biggest cost is going to be the antibiotics themselves. So it depends on what your dr wants to do. I chose to treat IV without a Dr after I learned how to do it all. It's very easy. I did make a video on it a while ago if interested. https://www.youtube.com/watch?v=NVhiu81vsCE
Let me know if I can help in any way. I still have boxes and boxes of unopened supplies that I don't need.
Hopefully none of this matters and your insurance covers it all. I had United & they denied it all from the start.
Posted by droid1226 (Member # 34930) on :
One more thing. If you do treat yourself, alldaychemist.com & some other places have cheap antibiotics.
Posted by Green_Where_You_Water (Member # 46647) on :
I have United as well they have not even been covering any of the office visits to my LLMD despite the fact that I have out of network coverage.
honestly, thats not quite as horrible as I thought... although I think the initial office visits for infusions may end up costing quit a bit.
I was wondering about doing all of this myself and what that might entail. I would just need to be confident with which meds to use before trying it.
Your video will be really helpful if I go for the IV and get to that step so thanks!
Posted by dbpei (Member # 33574) on :
My insurance covered the picc line insertion, all the meds (IV Rocephin), supplies and most of the home care during the first month. But after 30 days, I was on my own.
If I had continued with the same home care agency and they supplied the meds, my costs would have been around $2600 per month. More than I can afford!
But I was able to get the cost down to around $800 per month by using a reputable mail order pharmacy plus the cost of weekly dressing changes if you can find a nurse equipped to do those. That $790 included the cost of dressing change kits and supplies necessary for care of my PICC line.
I found it difficult to find a visiting nurse agency willing or competent to do infusion nursing. Eventually I found a retired infusion nurse who was also a victim of Lyme herself who was happy to help me out. But it was scary not having a whole team available to help me if something were to ever go wrong.
Please feel free to PM me for more info as it is all quite overwhelming when you are going through this for the first time.
Posted by droid1226 (Member # 34930) on :
Completely agree Dbpei.
Shop around. Prices vary. Something could be 4 bucks one place and a thousand at another.
I also wanted to say that with United, they actually covered the first week until my LLMD wrote "lyme" on the diagnosis.
I later found out that if he had checked "metabolism disorder" or "blood infection" or "encephalitis", they would have paid. So that may be useful to you.
I wish someone had guided me through it as far as mixing the meds and/or the basics of it all at the beginning so I would ask for help from one of us. It's worth it to not screw it up or get it infected. Good luck. Posted by poppy (Member # 5355) on :
Has your doc considered IM bicillin? Those are shots so they don't require a PICC or port. I hate needles and don't have anyone to help with it, so I never did it myself, but some people with lyme do this.
Posted by Green_Where_You_Water (Member # 46647) on :
Poppy, yeah she hasn't mentioned the Bacillin but Im going to ask about it and try to go that route first.
I don't love needles either, and would prob rather just have a PICC then constantly getting pricked...
But Ill do whats needed. Ill deff give that a try first to save expenses.
Droid, I just watched your video. Its so helpful to see how other people treat and what it was like for them.
You definitely got me wanting to treat this myself, which I was kinda already planning on anyway, but my biggest concern is knowing what meds to use without an LLMD
Did your LLMD just prescribe the Rocephin and it just seemed to be what worked? Or did you experiment on yourself along the way?
Posted by dbpei (Member # 33574) on :
You need a prescription from a doctor to get the antibiotics, as far as I know. I would never do this without a doctor overseeing. Too many risks of infection and more...
Posted by Tincup (Member # 5829) on :
DB said... "Maybe rocephin is the way to go. That's 4 to 5 bucks a pop. You might need 4 a day though. "
WOW! Holy Cow! Hard to believe that price now.
Between 1987 and 1990 (approx dates) just for the Rocephin- no supplies, no office visits, no picc line, and no home nurse, etc. and all out of pocket....
It was $2,000 a day for 1 gram, and the second time I did IV Rocephin it was 2 grams a day, making it $4,000 a day.
As a comparison, minimum wage was about $3.25 an hour back then, my van cost about $3,800 new, and the home I'd bought a few years earlier cost $6,000 (which included the price paid for a brand new furnace).
The third time- I believe it had dropped to right around $1,800 per gram for just the Rocephin, or $3,600 per day.
I was suppose to do 90 days that last time, but became allergic (or was it a herx- we didn't know about herxes back then). Of course it was already paid for and the pharmacy would not take it back so I got stuck with it.
Not having the heart to toss it out, I was finally able to find a doctor headed south so he took the meds and supplies to help the victims of Hurricane Andrew in FL.
The news media and team of emergency medical workers I'd worked with reported being low on all kinds of medical supplies at the time, especially antibiotics, so thankfully it was put to good use. Can you tell I am still not happy having spent all that money on meds that didn't work?
Thinking about it now, at those prices back then I'd have rather just donated an organ. ~smile~
Posted by Tincup (Member # 5829) on :
Hey Green, sorry I got way side-tracked there, still fuming over it actually.
Here is a link to "Help For You". Maybe something there can help you? There is a link on this page to check for 'Free and Reduced Priced Meds' also.
But even Infuserve, it's only 6 bucks, but they get you with the Saline bags. Saline is much cheaper if you buy it somewhere else.
To be clear, I'm in no way supporting anyone doing treatment on his/her own.
I did my own IV Levaquin to save my life. Sometimes you cannot wait for the 6 mnths or finances do not allow it & you need to do what you have to. :/ So please anyone, use a Dr at all costs.
I sometimes post non script meds for the desperate only & cause I've used the sites & know many others that do, including my current llmd.
Posted by bluelyme (Member # 47170) on :
can i get iv supplies for cheap without a script? Ie huber needles ,saline ,heparin .alcohol caps and microbial discs. And covers etc etc...
Posted by dbpei (Member # 33574) on :
You can order many of the supplies online through a very reputable pharmacy in Florida that also sells IV meds with a script from your doctor.
There is a Facebook group for people with PICC lines and PORTS with a some nurses as administrators and sometimes members of this group try to sell new supplies they purchased but can no longer use. Please send PM for more specific info on both.
![[Frown]](frown.gif)
they have not even been covering any of the office visits to my LLMD despite the fact that I have out of network coverage. ![[Smile]](smile.gif)