How, exactly does IV antibiotics work?

[Ephedra]

Just thinking ahead.  If I had to go to IV antibiotics, how does all this work?  

I know that I would need to travel a distance to get the PICC inserted.  Do they do the first infusion at that time?  I would need to be capable of driving myself home is why I ask.  It wouldn't be so powerful to initiate some sort of massive herx, would it?  I wouldn't be to sick to drive home would I?  And I am assuming that, from there forward I would do my own infusions - right?  Anyone have any experience with IV antibiotics?  I am clueless!  But I just want to be more prepared if it comes down to it.

Thanks!

[Ricobord]

You'll have to go with whatever Medicare requires for the month that they'll pay for it. Most of the time, he who pays the bills sets the rules. He who carries liability also sets the rules.  That's why some infusion pharmacies require an infusion nurse.  I encourage you to welcome having a skilled nurse do the dressing change. You don't want to risk sepsis as it can literally kill you.

If you do go on IV meds, you'll need to decide quickly if you want to continue out of pocket after that, as you'll want to keep the PICC line in and continue your treatment.  I know one person who kept her PICC line in during a break in Rocephin treatment and was able to fend off her insurance company's demands to remove it by getting Vit C infusions through the line during that break.

There are other meds you can get via IV, but insurance doesn't always pay for them unless there's definitive proof you cannot take the oral version.  Getting meds via IV can sometimes avoid the GI tract issues from the orals.

Since you say you've been sick for years, I highly doubt you'll be cured in a month. If you stop, you could possibly lose what gains you got from the month of infusions. If you do start Rocephin and can afford it, I encourage you to continue with it as long as your doctor recommends it.

[cave76]

Since you have Medicaid, which I wasn't aware of or had forgotten, that opens a whole 'nuither can of worms! And a big one.

I've never been on Medicaid but I knew a woman who was and also had IV for Lyme. It was a long time ago and what little I remember was that she had to go to an infusion center each day for the med. If that's standard for every state I don't know.

[Ephedra]

Thanks Ricobord!

I have medicaid and I am not sure what I can expect from them.  I know they would pay to have the PICC inserted and one months worth of IV abx.  And I know they don't pay for IM at all.

Thanks to you too cave!

1  Yes, I know that I would need to have the PICC inserted at a hospital - if you read the original post.  I just don't want some nurse coming by my house every week.  I just want to be left alone!  I look horrible, I'd say worse than the typical Lymie.  My circadian rhythm is way off, so I sleep all day and am up all night.  And I doubt they'd come by at 2 or 3 in the morning.  Who picks the time for this?  Do they just stop by whenever??  

2.  I could only imagine having a PICC inserted would be expensive.  Most things involving any hospital procedure typically are.  But I never thought much about it.  I have no clue exactly how expensive.  As I said above, insurance would pay to have it put in.  I am just not sure if I had it taken out after a month and decided to go IV later, if they would pay to have it inserted again.  I doubt it!

3.  Yes, I am aware that I would need a doctors order.  That is not a problem.  The problem would be driving the 60 miles to the hospital and back.

I have medical sense and I think the doctor knows that.  I also have a computer, which is how I figured out I had Lyme in the first place.  And so if anything went wrong or whatever, I could look it up.  I couldn't imagine how hard it must be to change the dressing.  I can take my own blood pressure and temperature, ect.  I know the signs of an infection, but me getting a fever - not likely to happen.  I don't think I have ever had a fever in all my adult years.  But I understand the other indications of infection.  We'll just have to see how things are done.  I think it's up the doctor more than it is anyone.    

Yuck, I certainly wouldn't go swimming in any river - ever.  I don't even go swimming in public pools, only my own.    

[cave76]

It would be great if Ephedra would clarify a few things for me? Perhaps I'm not reading/understanding your posts correctly.

You said:
"What if I pay for this and no insurance company will be involved?  Not going to want to be bothered by some nurse."

I'm not exactly sure what you mean by that.

1. You do know, I'm sure, that you have to have the PICC line inserted at a hospital or infusing agency, right?

2. You also know that inserting a PICC line is very expensive, right?

3. You also know that the only way you will be able to get a PICC line inserted is if a doctor orders it, right?

Those facts are not dependent on having your insurance involved at all. If you have the money to do that------then it's do-able.

But once your doctor orders a PICC then things go ahead in a certain way and because of all the liabilities inherent with a PICC then there's no way that I could imagine that the doctor OR the hospital OR infusing agency is going to turn patients loose to take care of their own PICC lines/dressing changes/monitoring yada yada!

I heard of one Lyme patient with a PICC line who went swimming in a river that was known to have some 'pollution' problems (like raw sewage)!!!  

And I can't imagine a person even wanting to go without monitoring. Although thousands of people have PICCs with absolutely no problems----- that lack of problems is BECAUSE of having a home health nurse  look in on the patient!

Please clarify my questions, if you will. Thank you.

[Ricobord]

I believe the shots are cheaper than the IV, but I'm not positive. If you're going out of pocket after a month, then you have to find the best cost supplier. But then maybe your insurance company will surprise you and pay for extended treatment!  Some actually do.

Many pharmacies will charge the full retail price, which is usually more than insurance companies pay.  For example, the pharmacy that supplied my Bicillin charged over $650/mo for 10 shots, but my insurance company authorized only about half that.  I had to pay 20% of that, a bargain for me at about 70 bucks a month. If I was paying out of pocket, I'd have had to pay the full $650.

My Rocephin is more than that (20+/mo, Lidocain, and the syringes and needles to buy). Insurance companies vary greatly in their coverage, as do pharmacies in their pricing.  (Mail order pharmacies can be surprisingly better at pricing than some others.)

I have heard of people going with Bicillin over Rocephin because of cost, but ultimately, it comes down to which one works for you.

I've shared everything I know about PICC lines based on all the questions I asked before making a decision for shots.  For actual experience, Cave76 and others who've been through it are a much better source.

I encourage you not to be afraid of trying IV meds. For many people (not all) with entrenched Lyme infections, it's how they get their best results.

Happy Holidays!

[cave76]

Oh, yes you did thank me! I appreciate all thanks.
And thank you for thanking me. (grin)