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Aug 20, 2008 - 10 comments







IV meds

I found out late last week that the insurance company is canceling my Rocephin (IV antibiotic) and home care (picc maintenance) as of the 23rd.  That's THIS SATURDAY, folks!  If I don't find some way to get them to change their minds by then, I have to have the picc pulled.  If I have it pulled any later than the 23rd, I have to do it at my own expense.

I was originally approved for 4 months of treatment, with a review of my case every 28 days.  Now they're saying 28 days is enough.  Something ain't right!

So anyway, the dr's office called and said the doc wants me to continue on the IV treatment if I can afford to pay for it out of pocket, otherwise I should have the picc pulled.  HELL NO!  I don't know anyone who can afford to pay $1200-1400 a week, plus supplies and nursing costs.

Talked with the insurance company yesterday.  The reason for the denial was the diagnosis the doc's office sent doesn't meet the insurance company's criteria for coverage (which makes me wonder why they approved it in the first place, but that's another wasp nest I'm not going to kick right now).  The ins co has authorized a peer-to-peer review of my case which means either the doc or the PA has to call them and justify further treatment.

Since the doc says he wants me to continue treatment out-of-pocket, he can sure as blazes find some kind of justification to present to the insurance company.

Rocephin is the only antibiotic I've been on so far that's done anything for me.   When I was on oral antibiotics, my symptoms were getting substantially worse.  That's why I'm fighting so hard to stay on this treatment.

I tried calling the dr's office on Friday with the info and, guess what?  They were closed already!  15 minutes early!  So, their current hours are 9am to 4pm, with an hour and a half for lunch.  And then they're late turning on the phones in the morning and after lunch and they turn them off early.  Must be nice.  There's no answering machine or service for leaving messages after hours.  Just a pager number to contact whoever's on call in case of emergency.  Called them again yesterday and left a message asking them to call me, no matter if they're going to help me fight this or not.  No return call so far.

In the meantime, just in case, I'm arranging to have the picc pulled on Friday afternoon after my last dose of meds.  I'm so hoping someone pulls a miracle out of their butt and it doesn't come to this.

I'm freaking out!  A decision has to be made by this Friday or the picc comes out and I'm forever done with IV meds.  Suck!

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by peggy64, Aug 20, 2008
IS there any way you can just GO up to the drs office and get them to take action? Sometimes it is more difficult to say no face to face.

You might not be physically able. I sure hope this works out for you. I know you don't need the added stress that this is bringing.....

by Nyxie63, Aug 21, 2008
Unfortunately, the dr's office is 4 hours away.... each way.  And with the picc in my arm, I can't drive for more than an hour at a time.  If it weren't for the distance, I'd have been camping on their doorstep yesterday morning.

So here it is, Thursday - one day to go, and I still haven't heard from the dr's office.  I'm going to be sending them a nastygram today.  This is rediculous!  THIS IS MY LIFE WE'RE TALKING ABOUT HERE!!!!

There is a small glimmer of hope through all this, although in another direction.  I found out about a local doc who treats lyme.  He's supposed to be pretty good, seems to care about his patients, and returns phone calls.  His office even has an hour in the mornings for Q&A time where you can call in with quick questions and get answers right away.  Sounds like what I've been looking for.  He's reasonably priced too, even though he doesn't take insurance (none of the lyme docs do).  

Even if he only gives *half* a rat's patootie about his patients, it's a darn sight better than what I'm currently dealing with.

by peggy64, Aug 21, 2008
well that is great...some positive news!! I hope it turns out to be just what the dr ordered....pun intended.

by Nyxie63, Aug 21, 2008
Thanks!  I've got my fingers crossed. :)

by laura1967, Aug 21, 2008
Nyxie63- I am so sorry to hear you have fallen victim to !@XX!@ insurance company trying to be your dr and telling you how you can be treated. Unfortunately this is very common with lymes and ins companies. They do not like to give IV antibiotic treatment past the 30 day mark....a lot of docs and ins companies do not believe in chronic lymes or the long term residual problems. They do not have any understanding of the disease or the stages of lymes. If they did they would view it as the parasite it is....the cystic stages, etc. It takes a LLLLOOOOONNNNGGGG time of treatment for some that have gone untreated or are chronic. I have done extensive research on lymes and have been there myself. I ended up finding a holistic doc and going on Una de Gato (medical grade) and some other stuff for a long time. Do you have any of the co infections? If you are interested in hearing how I overcame it just send me a message.

by Nyxie63, Aug 22, 2008
I ended up sending a fax to the dr's office yesterday since I still hadn't heard from them.  Apparently the fax worked to light a fire under the doc's be-hind.

I didn't exactly get a miracle - more like a stay of execution.

Very long, convoluted, story made short: The order to pull the picc has been cancelled for now and a claim has been submitted to the ins co for picc maintenance while they're coming to a decision regarding the meds. The doc called for the peer-to-peer review and I can call the ins co in a couple of days to get their decision.


by peggy64, Aug 22, 2008
Praise God from whom all blessings flow!!   YIPPEE!!!!

Now just focus on getting better!!

by Nyxie63, Aug 22, 2008
Yep, I'm seeing an LLMD - supposedly one of the best in the country.  Dr H in NY.  While he's very good with treatment, either the office is simply overwhelmed with the number of patients OR he's gotten full of himself and just doesn't give a rat's patoot about his patients anymore.  Their communication is almost nonexistant and I found out he wasnt going to fight for me - at all!  Up until he got the fax, that is.  *insert evil laugh here*

I have chronic lyme.  The doc figures I was first infected 30 years ago.  Fortunately, I have one heckuva immune system and it didn't start seriously manifesting until 3 years ago when, after numerous reinfections from multiple tick bites, I finally started showing symptoms.  At this point, we're not looking for a cure - it's more a quality of life issue.

I've tested negative for co-infections, but have clinical dx's for both babs and bart.  I also have elevated titres for EBV and HHV-6.

Will send you a msg later today.  Thanks for the offer! :)

by Nyxie63, Aug 22, 2008
Indeed!  I'm thanking every single higher power at this point.  Would do a happy dance if I could. ;)

Thanks again for all your well-wishes and prayers!

by Nyxie63, Aug 23, 2008
Well that didn't last long.

The insurance company declined to cover picc maintenance while we're waiting out the appeals process.  So the picc's being pulled on Tuesday.

I've been trying to focus on the positives of this, considering I'm fully aware of all the negatives.

1.  I'll be able to lift stuff again.

2.  It'll make Hubby very happy to have someone else clean the cat boxes.

3.  Depending on what meds I'm on, I might be able to drink again (and I'm seriously thinking about getting drunk soon at some point).

4.  No more paranoia about every little pain in my left arm or chest.

5.  More room in the fridge and on the counter once the supplies are gone (going to be donating the supplies to those who need them).

6.  Will be spending 1/2 hour less a day, plus over an hour a week, on health/medical stuff.

7.  No more weekly blood tests!

8.  Won't have to wrap my arm up like a saran wrap burrito before taking a shower.

9.  I can use all the socks with holes in the toes for house cleaning instead of covering the picc.

10.  I'll have to take fewer meds and supplements to counteract the side effects of the IV meds.

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