Can anyone give us a FAQ on out of pocket IV ABX??

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 12/4/2008 7:05 AM (GMT -7)   
Hi everyone,
 
I am preparing to start IV ABX and I have read from time to time some members having to pay and prepare their own ABX after their insurance companies stopped paying for them.  Can anyone give us a "how to" on this route?  I have read that it can run up to $3000 a month if you don't know the ins and outs of how to obtain IV ABX on one's own, and that some have gotten the cost down to $700 a month doing it themselves.  Thanks for any help!
 
Chris
 
PS.  I'm not being lazy, I did a search in the last year and didn't find any detailed info.  smilewinkgrin

judy3
Veteran Member


Date Joined Nov 2006
Total Posts : 667
   Posted 12/4/2008 8:30 AM (GMT -7)   
I did IV Rocephin out of pocket, first you need to shop around for the 2 gm vials, try all the pharmacies in your area, I paid about $400.00 for a 30 day supply, than you need to purchase, IV tubing, IV Pole , IV bags ( I did 100ml bags with 50ml fill) saline and heprin flush and you need dressing change kits, it costed us about $500.00 per month, found the dressing change kits on ebay, the Salin and Heprin you should only purchase from a reputable source, dont get it over the internet, the biggest problem if you dont go with a home care agency is who will place the line and who will change the dressings

sickof lyme
Regular Member


Date Joined Aug 2008
Total Posts : 110
   Posted 12/4/2008 9:11 AM (GMT -7)   
IV's are just expemsive there is not much way around it!! My LLMD has a choice of using HOme Health or getting all the supplies from his office and doing the changes at home. My husband does the weekly dressing change, they train you on how to do everything on your own.Not sure how many other LLMDs do that! But it is around 1200.00 a week for all the supplies and meds! I do Merrem and Clindamycin right now he also gives IV fluid bags to do 4 times a week to help with herxing and those are extra! So yeah Im going in debt like crazy but what else can I do ,I have no other hope! Hope things go well with you!

Dan's Mother
Regular Member


Date Joined Feb 2007
Total Posts : 189
   Posted 12/4/2008 10:14 AM (GMT -7)   

We get the Rocephin and all the supplies from a company called Community Surgical in Toms River, NJ, for about $600.00 a month.  We mix the powdered rocephin with a vial of sterile water and inject it directly into my son's PICC line.  It is not at all difficult.  The only drawback is that they do not have home care nurses.  We have to go to Dan's PCP for dressing changes and blood draws. 

When I was researching prices for all of this, the cheapest I found was thru Sam's Club for about $400. a month, but then you would have to find places to get the supplies.  For me it was worth the difference in price to be able to get everything from one place.  Good Luck

Karen


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/4/2008 12:51 PM (GMT -7)   
This is my latest:

My current LLDr. is the best in FL. I think I pay from $50 to $150 a visit. My insurance has always covered my visits. Now I have Medicare primary and then Cigna. My latest round of IV abxs cost:

New Patient: $106.47 (only paid this once)
IV Rocephin: $192.00 (per day, 4x per week)
Office service: $213.42 (per day, 4x per week)

So after my "new patient" visit, my IV abx cost $405.42 a day x 4 days = $1,622.00 each week x 10 weeks = 16,220.00.

So far it appears Medicare is covering the "New Patient" fee, my Cigna should cover the abx's (since they basically only cover my prescriptions).... and I don't know yet about the daily "Office service" fee.

This was the 3rd time in 8+ years that I have had IV abxs. The rest of the time I have been on oral abxs.
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 12/4/2008 4:02 PM (GMT -7)   
Jelaine: I see that you have done abx-IV many times, what are the doctors telling you about why you are not getting well? For all of us newbies, I think we are expecting to "recover" in fact a freind of mine was just told by her LLMD that she should be CURED in 6 months. Why do you think some of us recover and some do not?? Thanks  D

lillimul
Regular Member


Date Joined Jul 2008
Total Posts : 104
   Posted 12/4/2008 6:30 PM (GMT -7)   
we pay $600 a month out of pocket now for rocephin and all the supplies through infuserve. I think length of illness has a lot to do with how long it takes to recover. i know someone well who is going into month 9 of rocephin and doing very well but it took 4-5 months of IV before she started having a lot of good days.... it seems for those very ill for a long time, long term tx is needed and if not treated long enough, there is more regression?....

Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 12/5/2008 4:31 AM (GMT -7)   
Thanks everyone...this is GREAT info!!!!  turn

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/5/2008 9:01 AM (GMT -7)   
Dowa said...
Jelaine: I see that you have done abx-IV many times, what are the doctors telling you about why you are not getting well? For all of us newbies, I think we are expecting to "recover" in fact a freind of mine was just told by her LLMD that she should be CURED in 6 months. Why do you think some of us recover and some do not?? Thanks  D
I truly believe that if the Lyme disease is caught early and treated early, that most people will recover.  I guess "early" might be actually seeing or remembering the tick bite and then receiving abx tx within 1 day to maybe 2 months (I am completely guessing on this). 
The only tick bite I remember is from when I was around 8 years old... although that doesn't mean I wasn't bitten again and I just didn't see the tick.  When I did get ill in June of 2000, I was told it was "all in my head" until my first LD test came back positive... this was in August 2001.  It took me 4 more mos. to find a doctor to treat me, and then it was 4-6 weeks of oral doxcycline.  So I was sick for 17 mos. before I received any kind of treatment.  I returned to work until 10/2002, when I had a complete relapse of all symptoms.  I tested positive for Lyme disease again.... and the doctor asked me if I had gotten bitten again (umm NO - NO friggin' way - I inspect dirt). 
So my belief is that I have chronic Lyme disease or as the IDSA likes to call it "In many patients, posttreatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection."  and then the guidelines go on to say we have chronic fatigue syndrome and/or fibromyalgia, etc. etc.  I don't care what they call it, if these are the aches and pains of daily living, the suicide rate in this country alone would be around 50%.

We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 12/5/2008 10:56 AM (GMT -7)   
JELAINEP said...
I don't care what they call it, if these are the aches and pains of daily living, the suicide rate in this country alone would be around 50%.

 Truer words have never been spoken!
 

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 12/5/2008 11:05 AM (GMT -7)   
I think I have had LD for many years and dont know if abx would help or hurt at this point. Thanks, sorry you are hurting...D
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, November 20, 2017 12:49 AM (GMT -7)
There are a total of 2,895,636 posts in 317,819 threads.
View Active Threads


Who's Online
This forum has 157428 registered members. Please welcome our newest member, Roberto Kiehn.
244 Guest(s), 6 Registered Member(s) are currently online.  Details
Tim G, Claira14, martha123!, Girlie, Sheeks175, testuser1234


About Us | Advertise | Donate
Newsletter | Privacy Policy & Disclaimer
Follow HealingWell.com on Facebook Follow HealingWell.com on Twitter Follow HealingWell.com on Pinterest
©1996-2017 HealingWell.com LLC  All Rights Reserved.