How things are going with IV Rocephin

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nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 7/31/2010 11:53 AM (GMT -6)   
I've been on IV Rocephin for more than 6 weeks now, and until today, I wasn't certain that it was really doing anything.

For the first 6 weeks I was on 2 gms once per day. Then my LLMD told me to change to a "pulsed" regimen: 2 gms TWICE a day for 4 days, then 3 days off. Today is day 4 of the double dose....this morning I woke up with a clearer head than I've had in FOREVER! I see indications and symptoms of the normal "me" that I haven't experienced in more than two years!

That's the good news....the bad news is that I'm out of money and this will be my last week of IV Rocephin. At least for a while. I'm paying for it out of my own pocket and can no longer afford to do so.

I'm continuing with my other abx (zithromax, Alinia, Mepron), praying that I don't slip back down the slope into the neuroLyme swamp....

JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 7/31/2010 2:45 PM (GMT -6)   
Hi JoAnn,

Glad to hear that you are finally noticing some improvements with the IV-Rocephin. I am currently taking Ceftin which I understand is the oral equivalent of Rocephin and have been noticing some improvements. I have been on it for two months now and am now experiencing less intense numbness. Most of my brain fog is almost gone entirely and my outlook is much improved. I will see the neurologist on Monday to review the results of my recent brain MRI and EEG. Hope that you continue to see improvements in your symptoms.

Gary
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin, Ceftin.
 
 

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 7/31/2010 3:39 PM (GMT -6)   
Wow!!
Congrats to both of you on seeing some improvements!!! That's always encouraging!!
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 7/31/2010 3:57 PM (GMT -6)   
well you just made my day, Nasa Girl!!!
did they say which infection the reciphrin is for and how much longer they want you to take it if you had $$

and how expensive is that?

congratulations!!!!
hep c , lyme
Dad has lyme

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 7/31/2010 4:03 PM (GMT -6)   
It's great that you're seeing improvements. I think Rocephin is injectable? So maybe IM injections might work and be much less expensive cause it avoids all the expense associated with the IV? There is a generic for rocephin now if you're not already using it.

Would sure like to see you continue to make progress.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 7/31/2010 4:48 PM (GMT -6)   
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)
(925) 830-0555

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)
(714) 772-0026
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)
Target Pharmacy
WalMart Pharmacy
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
formulary!

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!

(((((((((hugs)))))))))))
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 5771
   Posted 12/9/2014 4:39 PM (GMT -6)   
Found this thread as I was searching for info. A few days ago I noticed someone asking for help w/ insurance coverage for her PICC—hoping the info here helps?

-p
Chronic late-stage lyme—likely infected in 2000; Clinically dx 3/2014 w/ Babesia, tested positive for Bartonella, CDC-positive for Borellia. Multiple viruses and GI/immune treated first; started AL-Complex in May; started A-Bart and A-Bab in July; have IV port installed and started on Rosephin.
Detox: Pinella, Burbur, Parsley, Milk thistle seed, Burdock root tinctures; japanese knotwee
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