posted
I have the same question. I'm finishing my first week of iv and if I need to extend it past my four weeks I need to find the cheapest possible sources for supplies and generic rocephin.
If I can't get the price down low enough I'll just have to figure something that will fit the budget.
Hope all works out for you too mmcmann. It took me a good year before I noticed a difference when I took orals.
Now with iv, I'm trying to get what lyme is in the brain, that orals didn't touch.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
Yeah, that is my biggest concern, too - the brain.
I had a SPECT scan done which showed inflammation in the cortex which of course explains what we already knew
good luck to you, too. Hopefully, there will be someone on the board who can provide some insight.
Posts: 104 | From No. VA | Registered: Aug 2009
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posted
We got a couple of months approved based on the Lyme diagnosis, but then we were cut off of home IVs by the insurance company.
Instead, we are getting the vials of powdered rocephin through our pharmacy and amazingly, the prescription plan paid for it. we've only done it once for 7 days, but we'll try again next week.
We bring the vials to our LLMD's office where they do IV's and they mix up a week of IV bags for us. We take them home to put in the refrigerator. My son does the IV's every evening at home.
Once a week, the nurses at the LLMD's office change the dressing and check the PICC site and send us home with all the supplies we need. So last week I spent a total of $175 including the $10 co-pay on the drug at the pharmacy. I'm going to submit the dressing change/supplies to my insurance and maybe we'll get lucky.
Some people buy all the supplies and rocephin from
I think there's a company called Creative Compounding, or something like that. They only have a license to serve certain states.
I can't remember where I learned about this... it may have been on Lymenet but I can't remember.
Maybe somebody else knows more..
Mary
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
I am working on this too. I been on orals with LLMD for 2 years. He wanted me on IV 2 years ago but because of no coverage and MI economy - I couldn't do it. I am trying again - my insurance covers if I go to hospital daily which I could not get out 2 years ago. Now I can but how long will they cover? A month will not do it. So I am thinking a month daily at hosspital than home plan. My husband found a 25.00/mth option at infuserve america where you slowly push rochephin into picc line but must do it slowly - 1/2 hour. They have easier programs but more like 40/mth. I am also considering buying powder at costco and figuring it out on my own.
Posts: 128 | From MICHIGAN | Registered: May 2008
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posted
My husband found 25.00/day vs 40/day at infuserve but different infusion method. I said month up above - if it was monthly cost it would be a no brainer . marypart - can you break down 175 cost for me so I understand it as this would be another option. There is an LLMD (not mine) about 30 mins away that may do this for me. I would also need weekly blood draws and picc maintenance.
Posts: 128 | From MICHIGAN | Registered: May 2008
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posted
Good info here... but having hard time understanding
many questions...
Does anyone mix themselves... meaning the powder rocephin and fluids? Is this something I could do?
Currently I push in a large syringe 2mg over 5 minutes according to my In home nurse service. Is this the same if I mix the powder? or is it administered differently?
Whats the current cheapest price people are paying per day or per week for generic rocephin and supplies.?
Wiggy found $25 day? Is this correct?
Mary got $175 wk but paid $10 for co-pay on powder form with Insurance. Correct?
Sorry about the questions, so confused with numbers
Thanks bunches
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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still will need weekly picc maintenance and blood draws.
Posts: 128 | From MICHIGAN | Registered: May 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Please listen to my story.
My insurance initially agreed to cover my IV infusions. After 3mo of therapy I realized that they were not paying the home health company. I was not receiving nursing care, only medication and supplies shipped weekly to my house.
Anyways, my insurance paid for 4wks of treatments and left me with the bill for 7wks through the home health company. The home health company charged an outrageous amount of $2,750 per WEEK for IV Ceftriaxone (generic Rocephin).
Had I known that the cost would be so outrageous through the home health company I would not have used them. My copays cost more than my out of pocket cost through Infuserve! (I didn't know about Infuserve when I started IV's.)
I since have been paying out of pocket for my IV meds since May 09 while appealing my insurance's decision to deny payment. The appeal process has taken 16months.
I received the final determination just a couple days ago. The review was done by an "independent external review organization". Sadly they agreed with my insurer that treatment was not medically necessary and upheld the denial.
They sent me a copy of my "Confidential Ohio State Appeal Determination". One of the main conclusions made by the expert review was this:
" There is no objective evidence that the patient has Lyme Disease. The member had both a positive Western Blot IgG and IgM. Usually this pattern would indicate a nonspecific reaction, since by this time in her course there should be only IgG positivity in the Western blot".
Can you believe that? He said I couldn't have Lyme because I tested positive for both IgG and IgM antibodies. How ridiculous! He also said that I had been "significantly over treated for Lyme Disease". There was much more but I don't want to hijack your thread here.
So, now I'm stuck with a very large bill because I believed that my insurance company would pay for treatments that they said they would. Lesson learned.
I wish that I had payed out of pocket from the very beginning of my IV therapy. It would have saved me an unbelievable amount of time, frustration, tears, and money.
I now use Infuserve for all of my medications and supplies. They are the cheapest, most honest, and reliable company that I have found.
If you purchase the medication and supplies from them they will prepare your RX (ceftriaxone, clindamycin, etc...) for free! All you have to do is put the drug in your fridge when it arrives and pull it out when it's time to infuse. Simple as that.
Their pharmacists are great resources. I've called and talked with them many times. Same for the rest of the staff, always helpful.
If you are considering IV treatment, call them up and ask for an estimate. They will tell you how much the med and supplies will cost per day, week, and month.
Remember, if you do have to go the IV route, you will need to learn to care for the PICC line yourself (flush, infuse, dressing changes, watch for s/s of problems, etc...). Make sure that you or your loved on is ready for this.
Good luck. Pay out of pocket. Let Infuserve submit your receipts for reimbursement (yes they will do the work for you!). Don't get stuck with outrageous bills like I did.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Thank You Sammy. I'm sorry you have that stress to deal with.
I had a simular thing happen with bicillin IM's.
Ins. Pd one month telling me they were covered. Then without telling me after I paid out of pocket for the next 2 months found out Insurance won't be reimbursing us.
My hubby wrote the appeal cuz I mentally couldn't and they denied us. Over 1000 bucks gone!
So.... you do all dsg changes yourself?
Does your line need heparin? My PICC is a PASV and supposidly does not need heparin to keep line clear. But the nurse insists that I use the heparin.
Not needing the heparin would help with keeping my cost down as well.
Counting my pennies....
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
For about 6 wks my insurance paid for home care that included a nurse visiting to pay the dressings, delivery of the IV medication mixed up in bags that I had to refrigerate, and all the necessary supplies.
Now, for just one week, I have filled an Rx for the vial of powdered rocephin. I don't know if they will do it again. I'm hoping. So I paid $10 copay for 7 vials.
I paid $160 to my doctors office for mixing the powder into IV bags, giving us all necessary supplies, and doing a dressing change/check. I will have to do this on a weekly basis. The breakdown was: $60 for Irrigation impl. ven. acc. and $100 for IV supplies, mainte. per wk.
Hope that helps.
Mary
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
Contract pharmacy in Colorado Springs will ship IV meds, tubing, flushes, and all dressing change supplies. They offer a cash discount and take insurance too I think. I found them to be well priced and great service. Not sure how they compare to others, but I am happy.
Posts: 747 | From Utah | Registered: Apr 2010
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posted
Ihope this helps someone out there with memory loss from Lyme disease-I had my benicar medication for hbp increased a few months ago and have improved memory so much more so that I can actually remember where I've left things or remember what I've read. I had no idea what caused my improved memory because my reasoning for the benicar increase was my blood pressure seemed too high. Then I was reading the book "The Top 10 Lyme Disease Treatments" by Bryan Rosner and read that taking benicar did just that. A miracle! That book is full of info! Hope this helps...
Judy(erythmiat)
Posts: 8 | From central new york | Registered: Aug 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
TS96, my mom does the dressing changes for my PICC line. I watch and guide her (because I'm kinda OCD perfectionist when it comes to sterile technique and nursing skills).
I do all of the daily care, flushes, mixing meds when necessary, infusions, etc...
My PICC line (Bard Groshong NXT PICC) does not require heparin flushes. I don't feel comfortable with the idea of not using heparin. Even though it would save me money I want to do everything that I can to keep my PICC functioning like new with no complications. So, I use the standard saline, antibiotic, saline, heparin protocol.
For those of you with PICCs or thinking of getting one soon. Be sure to use a Biopatch with every dressing change. It has been proven to reduce catheter related blood stream infections. Check it out here: http://www.ethicon360.com/products/biopatch-protective-disk-chg Some home health companys skimp and don't include these in with the dressing change kits. You have to request them separately. It is a must.
If you happen to be one of the unlucky few that are allergic to chloraprep there is an alternative to the Biopatch. It uses silver ions to kill infectious organisms, very effective. It is a little cheaper than Biopatch. I did alot of research and asked Infuserve to carry this product. It is called "Silverlon Lifesaver IV Catheter Dressing". Works as well as Biopatch when applied dry. If you moisten it as directed before application it is even more effective! You can read more here: http://www.silverlon.com/iv_catheter_dressing.html
Take care all. Try your best to save money but don't skimp on the essentials.
Posts: 5237 | From here | Registered: Nov 2007
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posted
It seemed dependent on the treatment, for ours. We have HealthAmerica insurance.
They covered 4 months of IV Rocephin the first time I was sick. They covered 3 months this last time, but I wasn't seeing improvement on it like I had before (which apparently isn't uncommon).
So my doctor wanted to switch me to Vancomycin. They were willing to cover that, but I had a bad reaction to it and couldn't take it.
So he wanted to try Zithromax. They declined coverage because it is "not approved for the treatment of Lyme's [sic] disease"
Honestly, if you're going to tell my doctor how to treat my illness, you could at least spell it right.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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