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!

[Ephedra]

Thanks again!  You two are very helpful :)

I'll just have to wait and see how the "rules" are in this particular state.  Because I have no clue.  And I know the "rules" can vary quite a bit from state to state.  A months worth they will cover, I know.  I guess it would be interesting to see what sort of reaction I may get, since I have not been very responsive to orals.  But other than that, it's just a tease!  I may just refuse if the IV antibiotics are out of my price range.  I am hoping that they are not ridiculously high but I have an application for assistance, if it comes down to it.  Not real sure how all that works either.

Yes Ricobord, I agree that every three months is a long time span between appointments.  But it's not like there is no communication between appointments.  I am not sure if I should ask for a closer time frame or not.  That would just cost me more money, and I am not sure if there would be any benefit.  It seems like there may be.  I don't know.

[cave76]

Here is what Ricobord said and it bears repeating when a person is trying to 'figure the system':

" Most of the time, he who pays the bills sets the rules. He who carries liability also sets the rules. "

Cui bono.

And Medicaid is a harsh mistress! Although it can be a life-saver for some, it also has a lot of restrictions that I'm not familiar with.

[cave76]

You said:only
"I am concerned about having a catheter hanging out of my arm or taped to my arm or whatever.  I could only imagine how restricted that must feel."

Absolutely no feeling of resrtiction. You forget about it after a couple of days.

Here is a picture of the tubing I used to secure the catheter tubing to my arm. (Obviously that placement wouldn't be where a PICC would be inserted.) There is nothing 'hanging out'. The tubing comes in all sizes, from finger to chest.  I liked it because it allowed air to the area more than a tube sock, which some people use, and was cooler in the summer. More air, less chance of sweating.

http://www.healthykin.com/p-3326-medi-pak-performance-tubular-elastic-net-dressing-retainer.aspx

A 3/4 sleeve on blouse would hide it all. But I never tried to hide it. At times someone would come up to me asking what that was for----- and I got a chance to give a small speech on the dangers of Lyme disease. (grin)

You also said:
" Because I am sure not going to feel like hanging out at an infusion center, whether my life depends on it or not! "

You might feel differently about that when your life MIGHT depend on it. LOL

It may seem as if I'm trying to talk you into getting a PICC. Not at all!

You must do what you must do and that's your decision only. There are many lurkers that receive a lot of information while not participating in a thread. That's the main reason I offer this information.

The second reason is you seem to be laboring under a lot of mis-information about PICCs and I'm trying to clear them up--- for you and any lurkers.

Another funny thing------ I just googled catheter pictures and most of the pictures where of people who looked about ready to die and in a hospital bed!!! That certainly isn't what I and many others looked like----- we went about our normal business (as much as Lyme would let us) of  taking care of home/family/children/working/ourselves.

[Ricobord]

Yup. I mistyped. I meant Medicaid and typed Medicare. I've had Medicare on the brain as a relative of mine just went on it and I'm learning more about it. I hope that Medicaid covers however much Rocephin you need!  That would be wonderful!

Every 3 months seems like a very long interval for appointments. You could lose time on a protocol that needs to be changed.  I still go every 6-7 weeks and I've been in treatment for 2 years.

[Ephedra]

Well thanks you two!  

Yes, I have medicaid not medicare.  Therefore it probably does vary by state.  I just thought it was mainly doctors orders.  Whatever the doctor orders that is covered, that is.  And however the doctor orders it.  Because I am sure not going to feel like hanging out at an infusion center, whether my life depends on it or not!  

I was sort of wanting glutathione injections, but of course that would be another out of pocket expense.  So I am not sure.  My doctor appointments are short and done every 3 months, so I hardly have time to prepare or think.  I'll probably be informed of what to expect at my next appointment.  I'm just not sure if I am going to need to have an upfront answer after I was just told how the process works.  Understand what I am saying?  Need time to process information and think.  But I am not going to need three months!  Once I come up with an decision, I would want it to move quicker than that!

I am concerned about having a catheter hanging out of my arm or taped to my arm or whatever.  I could only imagine how restricted that must feel.

[cave76]

Unless Ephedra mis-keyed or I mis-read or you mis-keyed,  I believe she said she has Medicaid not Medicare.

[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)

[Ephedra]

Did I not already thank you too for your help, cave?  You and Ricobord are both are very helpful!!  But unfortunately I cannot choose two best answers.  

I'll just have to wait and see how things are done around here as far as the ability to do it myself or not.  But I think I got the main idea.  Anything else you want to add would be great!

Thanks again!

[cave76]

"I'm glad I may have the option of doing it myself if it comes down to it. "

I hope Ricobord will clear up any confusion you have about PICC lines.

[Ephedra]

Haha cave.  I'm glad you do :)

I wouldn't know where to look for providers that would go beyond a months worth of IV abx.  I would be considered to have a preexisting condition, so I am sure the rates would be through the roof.

"a couple thousand a month" are you serious Ricobord?  I was under the impression that it was $600 a month, which is not impossible.  A couple thousand a month, not able to happen.  Could it vary by state?  I still couldn't imagine it being that much of a difference.

I'm glad I may have the option of doing it myself if it comes down to it.  I am not sure who picks the time for some nurse to come out.  Do they pick the time or am I the one?  Or do they just stop by whenever?  I sleep a lot, unfortunately.  Don't feel well as you can imagine, and my circadian rhythm is way off.

Not a big fan of sleeves, which is why I was concerned about the visibility.
I'd sort of rather have a chest port than a PICC hanging out of my arm.  But I'd imagine that it would be harder to do myself due to the location.

Thanks a lot Ricobord!

[cave76]

"I have really got to quit putting so much personality into my post!!!"  

I find them enlightening.

[Ricobord]

If your insurance will pay for any of it, you'll definitely want that.  The cost adds up fast.  You'd could easily incur a couple thousand a month.  If you're looking at a year or more of treatment, the numbers get scary. There are a lot of people out there emptying retirement accounts, selling stuff, etc. to pay for Lyme treatment.  You don't need to refuse coverage just for control over treatment. You just need to find the right providers who'll work with you.

There are a lot of people out there who do their own infusions, but only after they've been trained on how to do it properly.  I'm a 'do-it-yourself' type also so I can relate, but it's still important to know what you're doing so you don't unnecessarily risk your own health.

My shots are an intra muscular injection in the rear. It starts out with a sting and ends feeling like a charlie horse. I usually have to split it in two locations. Some barely hurt at all and some are intolerable. It seems like it's random, but it's probably based on how close to a nerve or blood vessel I get. I usually feel like I have a couple marbles under the skin on each side in addition to various size bruises. It's not pretty.

I'm not sore as long as I use the hot pack afterwards. But I still prefer it to a line hanging out of my arm. I can actually do the shot myself, although it's awkward and I don't like to. It's not for the faint of heart. (Sorry if I'm repeating myself here...)

But even if you get the PICC line, the line is taped down to your upper arm. With sleeves on, it's unlikely others will notice, especially in winter with sweaters and jackets.

Just plan on not doing much of anything the first week.  At the very least, you'll feel more fatigued than usual. And it's very important that you do ask the doctor all your questions.  They're not idiotic when you have no experience with IV meds.  Few people do, so they expect you to have lots of questions.  

I've never had a nurse treat me like an invalid, so hopefully you won't experience that. I have experienced the opposite, with many of them not appreciating how sick I really was. It's a common story with late stage Lyme that the patients feel worse than they look.

The whole thing is less complicated than I worried it was. Once you get the hang of the process, it becomes routine.

[Ephedra]

I have really got to quit putting so much personality into my post!!!  

Thanks for your comments everyone!!  It helps a lot!

[cave76]

Oh my!

[Ephedra]

No I am not joking!!  LOL!  I am not going to be treated like an invalid by some nurse!  Not going to put anyone in charge of MY health.  And I think I may have that option.  If anything would happen, infection or whatever the blame would be on them.  And they don't care anyhow!  It's their job and they're getting paid, so why would they care if I got some sort of massive infection and died??  Not likely to happen, but just saying.    

[cave76]

"What if I pay for this and no insurance company will be involved?"

Whoa!!! LOL If you're serious, I can list a dozens hurdles for that path.
I just wrote some out, but deleted them after I thought perhaps you're just joking.

[Ephedra]

Thanks Jackie!  I am a little apprehensive but I try to not be too apprehensive.  I need to be prepared as I am fully aware that my thought process is not very good and quick.  I don't want to be faced with a split second decision and make the wrong choice.  And I don't want to sound like a delirious fool either by asking the doctor idiotic questions.  LOL!  

Thanks a lot cave!  What if I pay for this and no insurance company will be involved?  Not going to want to be bothered by some nurse.  I look horrible and probably feel worse than I look, which is bad.  When I don't feel well, I just want to be left alone.  So I am hoping I have that option.  I can do all of that stuff myself.    

Much thanks Ricobord!  What kind of Rocephin shots do you get?  You mentioned not having a PICC.  Certainly not going to want a catheter hanging from my arm.  Don't want anyone to know I am sick.  I don't want to be questioned and babied or bothered, I know some people do but I am not one of them.  

[Ricobord]

I do the Rocephin shots 4 days in a row, then take 3 days off.  It's a little over 5ml, which is a lot of volume. Most of the time, it requires two injections.  It's a caustic medication, so it's mixed with lidocain for a shot. Sometimes, by the 4th day in a week, it's hard to find a good spot. I'm always relieved to have 3 days off, but by the next week, I can tell I need the next dose.

It's definitely a trade off for a PICC line, and from what I understand, most people prefer the PICC line.  I think the Bicillin shots were easier to tolerate, but I think the Rocephin is working well for me now, so I'm going to stick with it.

When I did Bicillin shots I didn't feel I could give them to myself. The needle was longer than the one for Rocephin. (The Bicillin is done as a "deep IM" injection.)  A nurse friend of mine would come over and do them for me when my husband was out of town. She had done IM injections in the past and was good at it. A handful of times, I went to my doctor's office where a nurse did it.  (None of them were very good at it. I had to explain to them to go slow, etc.)  I can do the Rocephin shots myself, but it's awkward and no fun.

The shots are not a time saver as I have to ice up first, then more ice for a few minutes after, then a hot pack for a while to restore circulation to help absorb the medication and avoid soreness.  

Plus, I have to prep the Rocephin injection, which takes about 10 minutes. I had to get trained on that at my doc's office. It's a little tedious, but certainly do-able.   (The Bicillin was easier. I got prefilled syringes that were stored in the fridge and we only had to warm them up.)

There are a couple other options... the chest port (not very popular) and another kind of line in the arm that stays under the skin so there's no line hanging out. That one has to be swapped out every week, so it has its downside, too.

The great part about all of this intimidating medical-ese is that most people feel better on IV meds or shots.  Sometimes, a patient who can't tolerate them early in treatment, can successfully take them later after orals have knocked down the infection somewhat.  You and your doctor work together to figure out what's best for you.  

I asked for IV meds early on as I knew I'd need them given my hefty neuro symptoms. I'm really glad I'm on them again now, as orals had stopped working.

[cave76]

Short version:

1. You get the catheter placed in your arm. Usually just above the elbow.
2. That is usually done at a hospital or an infusion site (which is often, but not always, at a hospital)
3. The placement of the catheter is then checked via a fluoroscope/xray. (Always insist that is done. No short cuts, no matter how experienced the nurse!)
4. Then your first infusion of Rocephin or whatever is done at the hospital usually via an IV drip. This might take from 30 minutes to 1 hour. The longer the better.
5. After it's obvious that no severe reaction to the med will occur (sometimes you're asked to stay about another hour) then you're sent home. It's advised that someone drive you.
6. The next day a Home Health Nurse will come to your home to inspect the insertion site, perhaps change the dressing and give you instructions.
7. Your insertion site will be sore and probably have a reddish appearance around it. That's normal BUT at ANY time if red lines appear radiating out from the site------ call the Home Health Agency right away! That could be a sign of infection (and bad luck). Rarely is there a problem like that.

[When your doctor orders IV that always comes with a Home Health Agency included or (rarely) instructions for a person to appear at the infusion department daily. I don't know who makes the decision to have you do a 'push' or 'drip' infusion. My doctor decided a push was best and I totally agree! It allows for more freedom for the patient. An agency nurse will be assigned to you. She will be visiting you or calling you daily at first in order to check for possible infection and dressing changes. You can 'fire' that nurse if you feel she isn't following sterile technique. I had to do  that at least once.

Assuming a ''push" is the method, each week a refrigerated box of 7 large syringes filled with Rocephin (assuming a daily infusion) will be delivered to you. Those need to be kept refrigerated but at least an hour or two before doing the push they need to be taken from the fridge. You then hook that syringe up to the end of your catheter that's protruding from your arm. (Details later) You then 'push' a small amount into your arm SLOWLY (details later), wait a couple minutes then another 'push' until the contents of the large syringe are gone. Should take about 40 minutes. I never rushed that process! Too fast and too much will be dumped near your heart.]

8. The nurse will visit you once a week after the first few days. (She might even be the one bringing the pre-filled syringes.) She will change your dressings, take blood pressure and other 'housekeeping' activities.

So all you have to do is infuse once a day, have the nurse visit you once a week. You can always call the agency if you have a question. Once, in the beginning, I panicked because I couldn't get the med to go in! Because my insertion site was nearer the elbow than ordinary I was crimping my line and blocking the med! They un-confused me over the telephone. LOL

Ephedra, you did mention having a nurse friend help you. Ain't gonna happen. LOL The agency is in charge and they and your doctor and insurance company are in full command of your health. If she wants to help in other ways, that's great.

Oh and the most important thing?

AT ALL TIMES, WITHOUT FAIL, STERILE TECHNIQUE HAS TO BE FOLLOWED