Tried to search the questions for the below but didn't find anything. I know all cases are different I'm just looking for any experiences.
1. If you're only approved for 28 days of IV can you choose to keep the PICC line and pay for IV medicine yourself? If so, how does that work with nursing care, etc?
2. I'm waiting for approval for IV Zithromax, I haven't been able to find any sites that show prices, I mostly find posts on rocephin.
3. Is there any possible way insurance will ever pay for more than 28 days?
Thanks in advance for any info!
Posts: 28 | From New Jersey | Registered: Mar 2014
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Have you contacted support groups in your state? They will be able to give you more targeted info.
On your first question: Yes, you can keep the PICC line and pay for IV yourself. Many of us have done this. There are pharmacies that will sell you the meds and supplies that you need cheaper than an infusion service will that comes to your house. You still need an RX for this. Various places to get these things.
Your doctor can also write an Rx for health care nurse, if you have one now, to teach you how to do this yourself--infuse and change dressing. The only tricky thing about PICC lines is that it is hard to do the whole thing without another person. One handed doesn't work to change statlock or other securing device.
For prices on meds for comparison services, you can contact an infusion pharmacy and ask, such as Infuserve America, or others. Are you looking for the med price alone, unmixed? Keep in mind that supplies can add quite a bit to the total cost.
Don't know about ever getting ins to pay. Some activists in various states are trying to get laws. Some people have appealed the ins rejection, can go on for quite a while, take a lot of energy.
Posts: 2888 | From USA | Registered: Mar 2004
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Agree with Poppy.
Mixing the roceph yourself, and flushing lines is easy, after a couple times.
It is considerably cheaper also.
A good nurse or even your doc or your doc's nurse can show you how safely.
Your support group may even have how-to videos or know of nurses in your area to help get you started.
Also, only a certain lyme-friendly pharmacy carried Rocephin vials in my city. Support group and my doc told me which pharmacy.
Good luck.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I was blessed that my insurance covered I.V. antibiotics for the 6 months that I tried them. When the picc line broke, I did not have another put in.
I ended up ordering my meds from a place from Florida with all the I.V. supplies. I cannot remember the name of the place as it was so long ago and the LLMD who recommended it has since quit.
I had a nurse come for the first week and then I was on my own. I even went to work with the picc line and did the I.V.'s before and after teaching.
I was lucky that either the school nurse or a friend would change my dressing etc. after I taught them.
By the way I found that buying long veterinary gloves to wear over the picc line arm in the shower really worked well. I got them at Farm 'N Fleet or Tractor Supply.
I cut off clean socks to make an armband over the picc line. Kids thought I was some sort of hip weirdo at my teaching job---LOL.
Best wishes.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8905 | From Illinois | Registered: Aug 2004
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posted
Insurance only paid for 30 days of medicine for me unfortunately. I did appeal which took me months of work, and still lost.
I used a home health company - I paid out of pocket for the medicine, but my insurance paid for the line maintenance - supplies, and nursing visit once a week to change my dressing.
The meds were given to me at a discounted rate by the home infusion company as I was paying out of pocket. This made it as cheap as Infuserve America for me.
Posts: 187 | From Connecticut | Registered: Jun 2013
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posted
Thank you everyone. I, finding I don't know nearly as much as I thought I did about this but will need all the info I can get to make this decision,
I don't actually belong to any support groups but I will try and find one in my area and get info there.
I was told a nurse would come once a week to change dressing - from what I gather here this isn't necessary if I choose to continue myself?
Does anyone have any idea of the approx cost of upkeep all in if I did choose to continue? From everything I've read a month may not do anything and I would likely need longer. Is it even worn it to just do a month?
Posts: 28 | From New Jersey | Registered: Mar 2014
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posted
Sorry for all spelling errors,
Posts: 28 | From New Jersey | Registered: Mar 2014
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
All lyme people need to be part of a network, whether an online forum that they read consistently or a local/state group. This is not just because they can get help for their own situation but because activism is needed so that all of us will not have such a horrible time getting treatment and getting it paid for.
The situation you face, butterfly, is a very common one in lyme.
Posts: 2888 | From USA | Registered: Mar 2004
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When you say that you paid out of pocket for the medicine but your insurance paid for the line maintenance (supplies, nursing visit once a week, etc), how did that happen?
Did the insurance company just submit the bill for the supplies and maintenance and you paid for the drug?
Or did they submit for everything and only reimbursed you for that? Did the line maintenance require a prior authorization?
I was recently denied for IV rocephin (they said not medically necessary). Do you think there's still hope for me to get supplies covered if I've already received a denial on appeal of the IV rocephin?
The supplies are really as expensive as the medicine... Knowing exactly what steps you took to get the supplies covered would be really helpful.
Posts: 11 | From Northern California | Registered: Jul 2016
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Old thread ..citrus .. Pharmacy in florida has given me good rates on meds and supplies
it is still out of pocket ..they will submit to insuranve but unless the dx is other than ..are you positive for bartonella or other systemic infections .?.is your doc saavy on dx
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
There is a awesome lady over on healing well that explains the whole ordeal in great detail...hope to help, it is a steep curve but can be done ..we have ports though..
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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