posted
I apologize for all the questions lately, it just seems ike one thing is piling onto another.
Got a call from my infusion company today (which I expected) to tell me that my 28 days is up soon and my doctor will be writing a letter for extension of IV medication. They reminded me to flush my line every day, etc. (I have meds to last me till sunday)
They also said the nurse would be coming once a week to change the dressing even when I am not on meds but didn't mention whether or not that was still covered. Makes no damn sense to me.
I am 100% *NOT* comfortable with stopping my IV meds for any period of time more than 2 days. Of course it is Friday and I will not be able to get any answers till Monday. The office told me I could get a call back today about what I can do, but if course -- nothing.
I am willing to pay for the medication, even though I can not afford it.
How long is okay to be off the rocephin before things start to get really bad again. I don't want to relapse.
Should I do my meds every other day? I can't take orals to hold me over, so that's not really an option.
I am upset because if the insurance company DOESN'T cover these meds for longer than the 28 day period, it just will be DUMB. They paid to get a PICC put in me....4 DAYS AGO.
Not sure what to do.
I am confused and I am scared. Everything seems like it's not going to work out.
Does anyone have experience with Lapse in rocephin treatment? Did anything bad happen? Did you have to start all over? Did you pay for your meds out of pocket? What does it cost?
EVERYONE kept telling me -- cross that bridge when it comes -- but now I am at the bridge, and I have no idea what to do. I am mad that no one helped me plan for this, I am mad that everyone says to just not worry about it till its a problem. Well now its a problem and I'm screwed.
Rocephin / Zithromax / Supps Posts: 107 | From Plainview, New York | Registered: Sep 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I don't think a lapse is going to be a biggie. I have had a week in between my Rocephin protocol without meds and did not lose ground......
course I hadn't gained much noticible ground either So I may not be the best example for you.
Rocephin is generic now and not nearly as expensive as it was in the past. For this reason alone, chances are your ins. will approve a longer treatment.
I have not had any problem with my ins. and approval either time. I have BC/BS. I think you will be fine.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
The good thing is you still have your line in. That's always a big hurdle. Keep plugging away at insurance but meanwhile try to find a way to finance generic Rocephin.
Posts: 984 | From San Diego | Registered: Nov 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Well then look into INFUSERVE if your ins. denies further treatment. Infuserve has the best pharmacy and supply prices.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Also, you or someone else in your family can learn to change the bandage. Have the nurses show you how. One less thing for you to have to pay for.
Posts: 984 | From San Diego | Registered: Nov 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I was on IM rocephin and didn't start slipping back for a few months. Lyme is a slow growing bacteria.
If you start to get symptoms back right away then it is likely a co-infection. If that happens, call your LLMD and ask for orals to cover you until you can get more rocephin.
Don't you love the insurance companies? My doctor has had to jump through hoops all week to get an anti-fungal approved for me.
Today they told me they would only cover 14 days and my doctor will have to jump through more hoops to get more. I told them that if they hadn't delayed, I probably wouldn't need it for so long but now my mouth feels much worse than when we started.
Dig your heels in and fight. Start preparing now with information to fight. These are links that I've been gathering for my coming battle for IV rocephin. I plan to cull out the important points and write a letter to support my claim.
You may need to be prepared to go through a hearing.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
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