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Who 'owns' my picc line?

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Posted 12/2/2014 12:54 AM (GMT 0)
Who 'owns' my line?

I have had my picc line in for two months and had daily 2g of Rocephin (ceftriaxone).
IV ceftriaxone has been my greatest weapon against lyme (have been fighting for over a year and a half with multiple oral abx).
The rheumatologist that put the line in wants to pull it b/c he feels I have had two courses of 28 days of abx, so I should be done. Yeah, right....
However, I am still improving while on this medicine & don't want my line pulled.

I am seeing my LLMD on Wednesday so that the IV meds will be continued.
Can my LLMD legally take over responsibility for my line?

Meanwhile, the daily nurse called me today to come and pull my line & I told her that I am still waiting to hear from the doctor.
How do I continue to hold her off ?

I spoke with the rheum's office today and asked them to contact him ( he is training residents) and tell him that I am continuing to improve, but I'm not better yet, so please continue my IV meds.
It's becoming quite difficult now to have them keep my iv meds coming w/out constant calls in to their office. It isn't an llmd office, but he is referred to as the lyme specialist in the area, though not ILADS at all & no one working in his office is truly informed.

I want my LLMD to continue the meds, and he most likely will, but:

Which brings me to the question: Who owns my line?

Post Edited (Usedtogarden) : 12/1/2014 10:42:52 PM (GMT-7)

Posted 12/2/2014 1:30 AM (GMT 0)
It's your body... If you ask me, you can do what you want. Your line, your life, your choice. Know, there are risks for infections. But if you ask me, do what you want, and what you feel will help you. Don't take out, and then re-put in. You don't have to listen, just because he is a dr. and ordered it.
Posted 12/2/2014 1:31 AM (GMT 0)
Didn't you..or your insurance pay for the PICC line?!? Trust me, your doc., didn't pay any of the bills...which means...you own it...in my opinion.
Posted 12/2/2014 1:49 AM (GMT 0)
I was wondering about liability, or if
the rheum could give my lyme doc a hard time in any way...

Thanks. I really needed to be reminded of the points that you made!
I fell that way, too.

Still wondering about the legal/liability issues, if any?

Post Edited (Usedtogarden) : 12/1/2014 7:08:59 PM (GMT-7)

Posted 12/2/2014 2:31 AM (GMT 0)
Hi garden,

I think you hit the nail on the head. My guess is that it is a liability issue for the doctor. See what your llmd says but try not to take what the rheumy says personally. My lyme dr was sued ONLY by insurance companies and as a result no longer takes it.

If you feel comfortable just mention to your rheumy that you want to release him from liability with the picc line if that will help and that the llmd wants to continue treatment with it.

Sorry, thats a tough road, but I'm very happy to hear you are improving! Yay for that!
Posted 12/2/2014 3:19 AM (GMT 0)
I totally agree w/ opugirl. I just got my IV port installed at the beginning of the month and had to think through several scenarios in response to finding out the day after it was installed, that I no longer have my insurance plan.

YOU own the PICC. Infusions and de-activation are separate actions from installation, as far as your insurance company is concerned. Your insurance company is either going to cover or deny continued Rx, regardless of who prescribes it.

I like the idea of requesting for a releases for your Rheumy—but I really think you're better off saying goodbye to him, thank him for STARTING your treatment and let him know, explicitly, that you will by moving on to the care of an LLMD for the remainder of your treatment (and remind him that continuing abx for at least 2 months beyond cessation of sx is standard protocol). Give him a couple freebies—won't hurt him to learn a little.

And then your LLMD—or anyone else, for that matter, can continue Rx for the Rocephin. If you have trouble getting insurance to cover it, you can buy the Rx online - several sources, although it is expensive.

Hope you can transition smoothly! Please let us know how it goes.

-p
Posted 12/2/2014 4:24 AM (GMT 0)
Can you recommend any infusion pharmacies that accept many insurance types OR that are cost effective?
I've used Infuserve for glutathione, but they didn't take my insurance for that, so I am not certain they accept my insurance at all.

Great advice opu & p! The release of liability may be the key, here.
Thank you for your help on this.

My LLMD doesn't take insurance, either.
I need the rheum to treat my osteoarthritis issues & other possible autoimmune issues resulting from the lyme. He is a talented & caring doctor in that respect & I will always be grateful that he believed me that I still had lyme & put my line in, but my LLMD needs to take over for the lyme. It would have been quite difficult and much more costly to have my LLMD put my line in out-of-state.

Oh, p-, no insurance coverage- that stinks! I will hope my insurance will pay for the rx, but if not, I will have no other choice but to pay it. I cannot go backwards now that I am getting too close to knowing how great 'normal' feels, again!

I am so grateful for your support!

Post Edited (Usedtogarden) : 12/1/2014 10:46:51 PM (GMT-7)

Posted 12/2/2014 5:29 AM (GMT 0)
Usedtogarden
I am in the same boat! After exactly 1 month of IV Rocephin, the "lyme doc" who ordered it ordered it pulled. His office called the homecare agency who then called me to set up the removal. I simply said "no thank you, my primary care doc will take over". Because I declined, the lyme doc (can you believe he refers to himself as that) sent me a certified letter stating he was releasing me from his care.

I then spoke with my nurse from the agency and she kindly connected me with a wonderful nurse who does private homecare visits on the side. I buy all of my IV supplies and meds (rocephin and glutathione) from Infuserv. I pay for everything cause insurance only covered 30 days. I get bloodwork done every 2 weeks at my PCPs office. I have a new Lyme doc overseeing my case, but I run everthing through my wonderful PCP.

I am just now starting to see an improvement, and I don't want to give up! I'm hoping this PICC will hold out long enough for me to improve! It's gotten a bit sluggish at times, but we put a little heparin in periodically and it's helped :-).
Good luck with yours! Don't hesitate to email me if you run into a hitch- I learned a lot of ins and outs and am happy to share wink wink
Posted 12/2/2014 1:14 PM (GMT 0)
I am learning so much from this thread! I don't have a PICC yet. But may need one at some point due to my advanced case of Neurolyme. I've been on oral abx for 2 months with no improvement at all!

Usedtogarden- would you be willing to share more of your story? Symptoms? Abx that helped? Your timeline of healing?

I'm glad to see that the IV helped! I am seriously considering it even though it freaks me out. Lol.
Posted 12/2/2014 5:41 PM (GMT 0)
Quickly: June 2013 active acute lyme infection. CDC +.
Very severe acute infection- had West Nile or Powassan Encephalitis at the same time- organs failing, blood clot, meningo-encephalitis, anorexia, etc: undiagnosed for 2 months.
Wheelchair & bed bound.
Almost died. Doxy for 3 weeks. Still in wheelchair.
Doxy until October 2013. Slight improvement by September, then by the end of the month, went downhill & became severely anemic, trouble breathing.
November- 2nd LLMD in the picture: added Coartem, Tindamax (still on doxy).Major Tindamax herxing- killed my head.
Dec 2013- added Rifampin and began Buhner protocol. LLMD did not do herbals, so I started them all myself. In March 2014, I got an herbalist.
Basically, multiple abx, antiparasitics & herbal tinctures until 2 months ago (about 1 1/2 years on orals)

Oct2014- IV Rocephin (ceftriaxone) & still on herbals: hallelujah! Best healing yet!

I have an LLMD & an herbalist- Buhner's cohort.

Danna- I sent two emails to you. Utah- I will get to adding some info about myself shortly, you & I are the same age;)

Post Edited (Usedtogarden) : 12/4/2014 2:59:43 PM (GMT-7)

Posted 12/2/2014 8:14 PM (GMT 0)
I am also using infuserve. They say on their website that they don't take any insurance. i don't think you could beat their price anyway. I'm paying $360 for two weeks supply of rocephin and supplies. That comes out to $26 a day. I spoke with another infusion company that wanted $70/day. You might be able to submit their bills for your out of pocket insurance co-pay. i know I will try, expecting it to be turned down.
Posted 12/2/2014 8:38 PM (GMT 0)
Dax- what would it cost if you just bought the rocephin, only?
Also, why isn't your insurance footing the bill for your meds?

Post Edited (Usedtogarden) : 12/2/2014 2:44:39 PM (GMT-7)

Posted 12/4/2014 2:30 AM (GMT 0)
usedtogarden
I just responded to your email- hopefully it went through!

The rocephin that I order comes in a two week kit including supplies, but you can order separately if you have leftover supplies from the agency you were using. The kit is a very good deal though!

good luck ;-)
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