So, I was diagnosed 6months ago and have been on oral treamtents since then with no improvements. My doctor wants me to do 8 weeks of IV treatments at a cost of $14,000. Was wondering if this is an average cost. Or does anyone have any other suggestions?
Posted by momlyme (Member # 27775) on :
Do you have to do the IV in his office?
Sounds very high.
I was paying approx. $700 for 28 day supply, that included abx, iv supplies, dressing changes - everything except the nursing visits.
Putting the picc line in was covered by insurance except for the $100 deductable... so I don't know what this cost.
Posted by Camp Other (Member # 29797) on :
That sounds incredibly high to me.
I'd seen research done on this in other forums, and turned this up, which I wrote about in my blog:
quote:After surveying Lyme patients discussing what they pay for intravenous antibiotics, it is possible to get a month of IV Rocephin for $700 including supplies, and a month's worth of IV Zithromax for around $450 if taken every other day. A low of $300-400. a month was cited if patients are willing to mix and prepare all their Rocephin themselves. If the IV is fully prepared in advance, it's possible to pay closer to $2,000 for that Rocephin, too, depending on the supplier. Nine weeks of IV Rocephin and of Vancomycin can cost around $9000. when given in the hospital, and that is only that high if insurance does not cover any of it.
Posted by missing (Member # 22437) on :
I am on oral antibiotics!
Really cheap!
slowly worked my way up to the high doses over a 4 month period
I am very happy about this decision,
my LLMD is more focused on targeting the co-infections which , in my opinion, can cause much greater harm and destruction to our body and brain.
So, I have taken meds for Bartonella, which is cheap,
and now I have been taking meds for Babesia for over 8 months,,it is a little more expensive,
my daughter is also getting treated,
I stopped the treatment for one month, due to a misunderstanding, and my health went into a serious decline, so I was quickly put back onto the Babesia meds.
The same thing happened to my daughter, and she only stopped for two weeks, and she got a fever, and was very ill until she started back on the Babesia meds.
Borrelia Burgdefori, which I have had since I was 12, does cause problems, it gave me pains, arthritis, fatigue, and memory problems.
but when I was re-infected 3 years ago, it was the co-infections that really nearly destroyed my entire life, and has caused such extreme nerve pain that has had me screaming and crying almost every day!
I have finally found a med. to help deal with the pain in the meantime, until I am cured , or somewhat cured, from Babesia
I am more afraid of Babesia and Bartonella and all the other co-infections
In general, this is costing me $1500 per month, including appt's , lab work, and meds. (that's just for me, and it's the same cost for my daughter)
Posted by Camp Other (Member # 29797) on :
Yes, orals are so much cheaper. Though Mepron is pretty pricey unless you can get your insurance to cover it, and I was luckily able to. =)
If you don't have insurance, though? Orals can get pricey depending on what they are. Omnicef and Clarithromycin together ran me over $500 a month when with insurance they are now a $25 copay. HUGE difference.
Posted by llaw2 (Member # 26528) on :
To be honest, I wouldn't know how to go about doing all of this myself. If the orals were working, then I would stay on them, but they aren't. I keep reading about patients doing their own IV treatment but this scares the crap out of me. Where do I begin to know what I would need and how to do it? I'm a mother of 5 with a husband who, although he loves me, is not treating this as the serious issue that it is. I haven't even told most people what I'm going through because I don't want to be the one "looking" for sympathy. Have told my inlaws but their response to me was - "well, we knew a couple who had lyme and they were completely disabled". Wow, sorry for the pity party. Just feeling a little helpless today.
Posted by momlyme (Member # 27775) on :
Believe me, I am no nurse, have no medical training and I did it for my son. If I had to do it for myself, I would get the chest port so I had two hands to work with. The picc in the arm would be hard to do for yourself -- it would be difficult to screw on and screw off.
When this whole thing started with my son getting sick, my husband and I thought 3 weeks of antibiotics and he will be all better.
When we saw him getting worse, very quickly and sliding down a slippery, scary slope, we learned together. Or, should I say, I learned, he listened.
My son's LLMD loaned me Under Our Skin ( http://underourskin.com ) and we watched it together (without kids around). This was enough to educate both of us about the seriousness of this disease.
Just last week we watched "Under the Eightball"
There is no doubt in this house of the need to do whatever it takes to get well.
Has your husband seen "Under Our Skin" or "Under the Eightball"? This disease is difficult to get rid of and can be VERY serious if gone untreated.
If your LLMD believes IV is the answer for you, and you agree with him, do it. I don't think the $14,000 you mentioned is a fair price!
Posted by TF (Member # 14183) on :
Having a picc in the arm does not make it difficult for you to do your own IV infusions. They give you enough of an extension that you can use both hands to do the job. So, take the picc in the arm.
The insertion of a picc is quick and easy. Not so with the port.
You are not on your own when you are on IV. You have an infusion company to help you.
Here is a recent thread that explains how it works:
Too tired to give a big explanation, but picc is not hard. My husband put an extension on at night so I could do it myself in the morning. A piece of cake!
And that price is way high!
Posted by Camp Other (Member # 29797) on :
From people here and elsewhere, I've been told you can learn how to deal with a PICC line. All it takes is some practice and patience, and you'll get it.
I know someone who had her husband do it first, then she learned how to do it herself. And someone else had a family friend who was a nurse (lucky friend!) who taught her so she got the hang of it.