thanks everyone.... :)
Gary that's great that the Ceftin is helping!! I'm SO happy for you!!
I was on a similar oral abx, Omnicef, for a few weeks, but couldn't take the gastric side effects....sorry for the TMI, but I was in the bathroom 24/7. Does Ceftin cause problems with "D"? Well, I suppose any antibiotic can do that!
bucci, IV Rocephin is supposedly the antibiotic that can best penetrate the blood-brain barrier, so it's recommended if you have Lyme spirochetes in the brain (which I do apparently). As to how long I should take it, I think they would leave me on it for a few more months if my funds were unlimited. They told me at the beginning they thought I would need to be on it for at least 9 months to a year, maybe longer, based on the severity of my neuro symptoms.
I thought I could handle it financially since we gave up our home (short sale) and started renting to save money but SDI just threw me a curve ball and stopped my disability checks, which was a significant portion of my income...I was on partial state disability. I think I can get SDI going again, but until I do, I can't afford the Rocephin at all. :(
Rich, there may be a way I can get the IV Rocephin less expensively....I've been getting it fully mixed and ready to go, plus paying for a home nurse to come in once a week, and I've read online that you can get it in other, cheaper forms, for example, one type has to be mixed with sterile water.
Actually, here is the text of a post from another Lyme forum about
that topic, it may be helpful to someone else!Places to get IV Rocephin, other IV drugs, supplies, etc.
These three are my favorites:
San Ramon Custom Care Pharmacy (Formerly Medicine Shoppe)
They have the lowest price I could find for Zithromax, Avelox, Clindamycin and a very competitive price for Rocephin. They have great customer service too. If you're not picky about how many vials you receive in each package, they'll go looking for the cheepest supplier per vial for you. Ask to speak to the owners if you have a really complicated order.
Creative Compounds (503) 685-6111
The last time I called them they had the best price for IV Rocephin, 2g/day =$300/month. They were still working on getting permission to ship to CA, but I bet they have it by now.
ARC Infusion (Formerly ValueMed)
This is where I get my IV supplies (Saline bags, Saline and Heparin flushes, Huber needles, IV tubing). They are good at working with insurance companies to get this stuff paid for. They also have good prices on IV drugs.
Some other good places to try:
Costco Pharmacy (Best out of pocket price on Invanz)
You don't need to have one of these stores in your area to order from them, they should all be able to ship to you from their closest store. Costco pharmacy is open to non-members.
Infuserv America (800) 886-9222
This is a specialty pharmacy just for Lyme patients. They compound all the
medications and ship the bags to you pre-filled with the drugs, and you keep them in the fridge until you use them. I never went here because I managed to get most of my IV supplies paid for even when I had to buy the drugs out of pocket, so I only wanted the drugs themselves, and they don't sell them alone. Lots of other people use them though. They have special pressurized bags that you can put in your pocket and walk around with instead of needing an IV stand.
HomeCare Solutions (888) 273-9820
Another Lyme specialty pharmacy. I forget if they are any good or not.
Two last tips:
1. Always check the formulary for your pharmacy coverage before giving up on getting insurance to pay for your IV drugs. Most infusion companies pass a big bill to your medical insurance that includes everything - IV supplies, IV drugs and weekly PICC / Port care at home. This almost always has to go through prior authorization and is usually denied outright or approved for only one month. However, if any of the IV antibiotics your doctor prescribes are on the formulary for your drug coverage, you should be able to get the IV drugs from a pharmacy with no problems. Your insurance carrier may force you to get it from their specialty pharmacy, or they may let you get it from one of the pharmacies listed above. (Don't bother using Medco's mail-order pharmacy though, they've begun taking the IDSA stance. Just go a specialty pharmacy listed above if you
have Medco, they can't stop you then.)
You may find you can get certain IV supplies through your drug coverage as
well, like the Saline bags, Saline flushes and Heparin flushes. Check your
2. If either you've tried billing your medical insurance for everything all together and been denied, or if you've managed to get your IV drugs paid for with your pharmacy coverage, but not any of the IV supplies, try billing just the IV supplies (without the drugs and PICC / Port care) to the medical insurance. You may find the medical insurance is willing to cover those for you once you take the expensive IV drugs and nursing care off the bill. ARC Infusion above can do this for you. Getting a little paid is better than nothing!
You should be able to get your weekly Port / PICC care done at a local hospital instead of homecare. As a hosptial bill it almost never needs prior authorization the way at home care does.
I will DEFINITELY be looking into a way to get back on the Rocephin as soon as I get SDI straightened out!
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