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Still undecided about the rocephin IV--not sure what to do; there are other options!

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Posted 10/22/2010 10:50 PM (GMT 0)
Ok, I got the answer about my out of pocket expense, and it will be over $4000 !  So, I started to search for other options, as that is a lot of $$ that I would have to charge on the CC.  So I found this:

http://www.northdrugstore.com/buy-Rocephin.html

If the doc will give me a prescription--I know some drs will do this, I would rather get it from there and if he lets me, I can inject it myself.  My mom is a RN, although she is no longer practicing, but she tought all of us (3 girls) to do injections and we have done them many times before.  My sister will become a RN next year and she treated my grandfather while he had cancer and needed morphine injections (my sister also has a nursing degree but it is from a different country, so she had to go back to school here).   Injecting grandfather with morphine was very rough on her (because she knew the effects of it on his body), but it needed to be done, he was in a lot of pain, so she had to do it.

So, I am thinking my sis is coming during Christmas vacation here to stay with me and help me for a few weeks.  Why can't she do it for me? 

IS THERE A BENEFIT TO HAVE IV rocephin VS INJECTIONS rocephin? 

Maybe Caldonia will see this and help me out based on her experience.  Any of you have any advise or have you done IV or injections and did they help?  My worst symptoms are numb face, hot spots on my head, numb arm (left), and sore feet.  I am doing pretty well with pain, meaning I can take it bec it comes and goes, I still talk funny stuff sometimes that does not make any sense and makes my kids laugh bec they realize I did not want to say that etc  My brain fog decreased and some days it is completely gone.  BUT what worries me is that after 2 mo the neurological symptoms are not going away or even remotely decrease.  Could it be that I may have a co-infection?  WOuld Bartonella or Enriliciosis (Sp?) cause these same symptoms?  MY LLMD thinks I have Bartonella, but I tested neg for co infections.
Thanks!

Thanks!

Post Edited (Simela) : 10/23/2010 6:57:48 AM (GMT-6)

Posted 10/22/2010 11:23 PM (GMT 0)
I also found a few interesting discutions: http://www.mdjunction.com/forums/lyme-disease-support-forums/medicine-treatments/1503816-average-cost-of-iv-rocephin-and-flagylongoing

another place to buy it:
http://www.epharmacies.com/buy-compare.asp?low-cost=Rocephin 2g

Here is a list of prices for rocephin:

http://www.medscape.com/druginfo/pricebrandimage?cid=med&drugid=7013&drugname=Ceftriaxone+Inj&monotype=pricebrandimage
Not sure why this link does not work, I copied and pasted it, but if you do a search on
rocephin price, it is the 4th link that comes up.  It is on the medscape.com site.

also here:
http://www.pharmacyescrow.com/s46640-s-ROCEPHIN.aspx

Post Edited (Simela) : 10/22/2010 9:03:08 PM (GMT-6)

Posted 10/25/2010 3:21 PM (GMT 0)
On top of the $4000, there will be $8600 for the cost of the PICC line to be put in--just found this out today from the hospital. I have to make a decission by the 28th. My insurance MAY pay up to 45-50% of the $8600, I'll have to call later today, but I will have to pay out of pocket for the radiologist myself, insurance won't cover it because my PCP won't give me a referal. Appearently, the only things ins. will cover is the actual home infusion visits, not the drug, not the radiologist, and maybe they will cover a portion of the Picc line cost.

Not sure what to do--I read a lot about thesse on other boards, and it seems that a lot of the people that were on ROcephin for 6 mo or even more were not cured and are still struggling...  Not sure if it is worth it to spend this kind of $$ (that I don't have) WHAT WOULD YOU DO?  ANY OPPINIONS OR IDEAS?  I am looking at about $10,000 or even more, if ins. won't cover at least part of the cost for the PICC line.  Thanks!

Post Edited (Simela) : 10/25/2010 9:31:32 AM (GMT-6)

Posted 10/25/2010 5:09 PM (GMT 0)
Hi Simela, I did rocephin at my doc's office, one iv treatment at a time. There was no PICC line, so I did not incur any of the expenses you mention. The rocephin was $125 for two grams, which is the amount I got at each treatment, two times a week. Expensive, yes, but not nearly what you are looking at.

Doc never mentioned injections with rocephin, but some people do get bacillin injections along with oral abx.

The rocephin treatments did help me with the neuro symptoms.
Posted 10/25/2010 7:30 PM (GMT 0)
Thanks, Caldonia. This is a little more than I can take, actually, a lot more! I don't work, I stay home with my kids, so this kind of $$ is a huge issue.

Yes, most of my problems are neuro, except for my back pain, which I am not sure what it is... I was diagnosted with disk disease after the car accident last year, while I was in the hospital. Not sure how one can have disk disease and not know it, so I am not sure if it is Lyme connected or not, but radicular pain is the worst for me right now, worse than the neuro symptoms that are Lyme related.
Posted 10/25/2010 9:29 PM (GMT 0)
Personally, it all seems to be quite expensive to only have a chance that it might help - but that is just my own personal opinion.
Posted 10/26/2010 12:30 AM (GMT 0)
My wife and I walso did Rocephin IV and our Doctors office. They were $100.00 for two grams and we did them twice weekly. I offered to pay in full up front and he gave us a 15% discount. So, I guess in the scope of things it wasn't too bad. We feel that the Rocephin was helpful in treatment. Good luck with your decision.
Posted 10/26/2010 1:14 AM (GMT 0)
Personally, I wouldn't. I could not justify spending that kind of money unless I was SURE it would work. Like, 100% sure. I do not know if you have tried *everything else* and that is why you are at the iv abx point? (not trying to offend, I truly don't remember what I read of your story...I'm sorry!) Perhaps there are other things you could try? I am a sahm as well and I understand trying to get well on limited funds.
Posted 10/26/2010 2:31 AM (GMT 0)
Before I did all that I would try Bicillin and orals abx.

Bicillin pretty much got rid of my neuro symptoms. The cons to Bicillin is that it is a painful serious injection. It can be costly, It is also a slow treatment. You have to be patient. You wont see progress for months. They say that Bicillin is just about as good as IV.

I did 2.4 mu 3x a week for 14 months with orals too. My bum was sore and lumpy but my brain is a lot better.
Posted 10/26/2010 3:45 AM (GMT 0)
IV rocephin was GREAT. I loved it. I got on it after a very hard relapse.....I was in horrible pain prior to the IV. I responded very quickly to the rocephin. Unfortunately, it didn't last. Several days after coming off the IV I got sick again. Although, I didn't see any sustained results it stopped my downward progression. If I had the money I would be on it now. Unfortunately I don't.

It's a tough call. It is pretty difficult to justify spending that amount of money (with the very low possibility that it will provide lasting results). However, when I'm in chronic, severe pain money doesn't seem that important. Then again I don't have any. HAHA.

Just my 2 cents. Good luck.
Posted 10/26/2010 4:33 AM (GMT 0)
merrygirl: I'm trying to convince my doctor to do the bicillin injections, however, he's not listening at this point. He has mentioned flagyl and I think I need something more systemic. Did you take orals at the same time? If so, which ones? Thank you for your post....sorry about the sore bum!!!
Posted 10/26/2010 4:36 AM (GMT 0)
Whew! Simela, I got sticker shock just reading your post.... It's also worrisome to me that insurance companies are denying reimbursement for things they've historically paid for.... Since I'm hoping to have coverage at the end of next month, that didn't sound like good news.
Posted 10/26/2010 1:46 PM (GMT 0)
Lets see............. I dont recall exactly my oral meds were. ut basically you want to treat all forms of Lyme at the same time. I also treated coinfections at the same time. I was taking quite a bit of medicine. I will try to remember and post later.
Posted 10/26/2010 2:42 PM (GMT 0)
THanks for your replies.  It seems it is soooooooooooo hard for me to make a decission on my own these days.  I kept asking my husband what to do about something else, not lyme related, and he said to me, what happened to you?  Why do you need me in order to make a decission, you were not like this when I've met you.  Yup, he is right, I was always on the go and making my own decissions and very quickly, as well!

In regargs to the ins companies paying, I think they found another "angle" to slap us in the face with:  It goes like this:
Do you want ROcephin?  Sure, we wil PRE-APPROVE YOU (lets not forget I did get preaproved for it)
We'll pay for the home infussion (which constitutes of a nurse coming to my house a few times, 1-2 times a week for 4 weeks) and you (I) would have to pick up the tap for the rest (MOST OF THE COST)!  They consider this preapproval!  What a joke!  My guess is, they want to avoid paying, but also want to avoid bad press, so they came up with this alternative!

Post Edited (Simela) : 10/26/2010 9:11:23 AM (GMT-6)

Posted 10/26/2010 3:01 PM (GMT 0)
So are you still BFing, Simela? If you have already stopped that in anticipation, that alone would "open up the playing field" as far as abx treatment goes. There could be a lot of abx combos that could help you.

I was once the one who could make decisions *on my own* all day long as well! I believe this is part of the personality change that is talked about with TBI's. Decision making has been sooo overwhelming for me for about the last 3 years!!! I am getting better though!! Just before I had to come off the road with hubby 3 years ago, he asked me to get the oil changed in the car before I left to go home & it was the straw that broke the proverbial camels' back!!! I just crumpled into a heap on the floor, crying my eyeballs out!!! Shocked hubby pretty good, as I had been able to fake it for quite a while.

Although, like I said, I am doing a lot better now!!! :) Yippee skip!!
Posted 10/26/2010 3:28 PM (GMT 0)
Yes, Trav. But I could stop now, baby will be 1 yr old on 22nd of Nov. I am glad that I stretched it this far. You are lucky that you have some support from your husband, even if he took him a while to come around. I MUST keep going bec I HAVE TO take care of the little ones. Baby is the hardest at this point. Husband is still in denial, bec I am on my 2 feet every day, except for the times that I am really really sick and I lay down on the couch or on the floor. It is strange, because at times I feel soooooooooooo sick, but it lasts up to an hour now. I don't panic, I stay calm, bec based on the experience (so far) I know it will go away.

Yes, maybe if I fake it or I let show how badly I feel sometimes, he'd realize how serious this is.  BUT I HIDE IT as best as I can.  when my fingers curl up, I walk away and uncurl them, or I turn my back towards him and the kids and hold them straight until the pain goes away.  I did ask him what would it take for him to realize what I am going through and he just looked at me.  I gave him the answer: ONLY when I will lay down on the couch doing nothing, you will believe me!  He is not used to me being this way--I am THE strongest and healthiest woman I have known except (NOW) for lyme.  You would not believe the things I used to do!  Things that usually only men would do--including demolition.

He said to me (a few times), he is going to laugh so hard if I don't have LD. I just walked away, bec I got so mad with him one of these few times, and did not want to tell him what I thought of him at that moment, LOL

BTW, he has been coughing for 2 mo and abx did not help, so I think he either has a virus or Lyme. He has been tired, he sleeps more than I do. He lays down on the couch like he is about to die. What's wrong with men? I thought they are suppossed to be strong!

Post Edited (Simela) : 10/26/2010 9:34:44 AM (GMT-6)

Posted 10/26/2010 4:02 PM (GMT 0)
Oh Simela!!!
I am soo sorry you have been mislead!!! **Giggle!!** Men are not generally strong in the way women think of strength!! But that's probably a conversation you & I should continue in private!!! wink

I used to hide how bad I was feeling & found that it did me no favors! I don't believe it is helpful for any Lymie to hide their illness from any one. I don't complain much more, but don't hesitate to say things like, "Man!!, my legs & feet are killing me!! I have got to sit down!!" or " I need to go sit down, my legs are really hurting me bad, could you please _________?" (fill in the blank).

It really did take quite a while for hubby to come around, he was in denial as well for a long time. I had a complete working farm - my kids & I raised or made almost every single thing that we used - really!! I was the only adult working it when hubby & I got together, so he was used to seeing me being extremely active taking care of the farm & animals & bill paying, & home schooling my kids all the way through to college level. Next thing I knew I was on my rump with no way of functioning!!

I'll say a prayer that your hubby doesn't have LD - you don't need another one to take care of!!!!
Posted 10/26/2010 5:57 PM (GMT 0)
Amazing how much we can hide. Mandy in the DVD, Under Our Skin, talks about how she had been hiding various symptoms for ten years, etc. I'm sure we're all guilty....or maybe not 'guilty' but doing it out of necessity and survival. My daughter just visited from Florida and I made her watch the DVD. I told her I didn't want her watching it so much for my benefit, but since she now has a baby of her own, she needed the information. I think she was shocked at how bad this disease can get.

Ok, so Trav you did have some traditional meds to bring down the critter population....wanted to know that. Actually was hoping to get a little stronger then go after the mercury simultaneously. I have your information on the adrenal support you use (Natro-Bio or spelling close to that????) but haven't ordered any. I checked with Vitamin Shoppe and they carry the brand but not the adrenal....geesh.

Simela, I'm afraid if my husband ever expressed any doubt whatsoever about my having lyme, I'd simply have to kill him. He knows better....he watched me go downhill FAST under the stress of trying to keep HIS business afloat!! We're to the point that if I told him I had grown a third arm, he'd better go along with it..... Can't remember--did you get the Under Our Skin DVD for him to watch?

Yet again I have to say thanks to everybody for all you've taught me.....
Posted 10/26/2010 6:36 PM (GMT 0)
"did you get the Under Our Skin DVD for him to watch?"

Yes, he did watch it. After he saw it, the only comment he had was: "Oh, now I feel I have LD"
Don't get me wrong,  he knows better not to upset me with other things, but he did not really come to terms with LD. 
I tried very hard not to slap him accross his face when he said that LOL

Trav:
I know that now, a bit too late! LOL I think the opposite now, I think most men are actually very weak and selfish!  I think the only way we get an emotion out of them is if we "play" weak and helpless!  That is not my style!
Look, now we match: We are both veteran members!

Post Edited (Simela) : 10/26/2010 1:04:37 PM (GMT-6)

Posted 10/26/2010 7:40 PM (GMT 0)
Boooyyyyyyy, now they had better watch out!!! smhair

Wait until we get Mamyou up there!!! shocked Will we ever get anything done????

There are a few guys out there that are good. I have one of them. He was in denial simply because he was watching me going down hill & it scared him. During that time there seemed to be an abundance of "mystery disease" programs on during that time & that made things worse as he was beginning to wonder if I was going to make it.

Once I convinced him that I was not going to end up in the hospital for a very long time, he learned very quickly to help me as my cognitive symptoms got bad. He can actually usually guess what word I am searching for, or what I was in the middle of saying when I would loose my place in a conversation, remind me of things that I needed to do that day, etc., etc., etc. But...still.... every once in a while he still has to be "a guy"!!

Mamyou,
"Iherb" carries it for a good price - www.iherb.com/NatraBio#p=1&sr=0
I don't know how good the company is, as I just saw it referred to on here one day & thought I would check it out.

I too owe many thanks to past & present members for teaching me & leading me in the right direction to learn the things I now know about tick-borne diseases!!
Posted 10/27/2010 1:27 AM (GMT 0)
Trav:
I am not saying my husband is bad--I am saying he seems to leave on a different planet than me right now, bec he does not see what is going on. THe reason he can't see, is bec he is not looking! Otherwise, I could not hide my symptoms from him! He is just not looking! And he is sold on modern medicine, so it is hard to make him believe there is a big conspiracy when it comes to lyme or any other disease!

He had laser surgery for his eyes and his vision is much better than mine--he still can't see what is happening with me!
Posted 10/27/2010 3:00 PM (GMT 0)
Oh, Simela!! I hope you don't believe that I was saying that your hubby is 'bad'!! That is not at all what I was trying to say!!!

I actually think it's very difficult for someone who has not experienced this to understand what we are going through.

LOL!! Did like the part about the laser surgery!!!
Posted 10/27/2010 3:37 PM (GMT 0)
I didn't assume that, but I just wanted to clarify. Yes, he did the laser surgery and can work (on the computer) and drive and swim without glasses. He could not do this before. He has been losing some of his perfect vision, the surgery was done before the kids were born and before we got married. If you ask me, it was a waste of money, since he still can't see what matters LOL

Since we weren't married at the time, I could not tell him what to do with his $$. But I am better at measurements than he will ever be! When we do a project around the house, he asks me to measure and mark where to cut eg a piece of wood. He always cuts things too short! I don't get that! He uses levels and all kinds of things, and he is still getting it wrong! I only rely on my eyes, which are bad, I wear glasses all the time, and I could get it right 90% of the time--with or without glasses.
Posted 10/27/2010 5:33 PM (GMT 0)
That sounds awfully high for PICC insertion, I'd check around to see if you can get it cheaper. I think the retail price charged at my local hospital was closer to $2500, and insurance covered most of it.

Rocephin IV 2g (meds and supplies) can be as low as $25/dose if you do IV push, or around $30-$35/dose if you do IV drip. This is for home infusion, and includes everything that you need (meds, saline, tubing, bandage change kit, saline and heparin flush, etc). Drip is really better than push or the infusion balls, others are reporting bad results from those.

The nurse will only help with bandage changes, which you can do on your own once you're shown how, not with the daily infusions. So maybe two nursing visits, one to show you how to do the infusion, one to show you how to do the weekly bandage change.

Infusion pharmacies with the lower prices include InfuServe, InfuSource, ARC Infusion. All ship to your doorstep.
Posted 10/27/2010 9:38 PM (GMT 0)
Lindaca:
I have heard similar quotes that you gave me, I don't know what's up with my local hospital. I will wait to talk to my dr and look into other treatement options. The ins could actually not tell me how much they will pay out of the $8600 without a code from my dr. But since my PCP won't give me a referal bec I am not seing a specialist, My LLMD is a regular PCP that does not accept my insurance, they cover up to 50%--I know this from other times I needed to go without a referal or out of cap. Yes, I also think is very high, but hospitals are jacking up the prices bec some people use the ER for no reason (If they don't have a reg dr) and then they don't pay. We are paying for everybody that does not pay. I am so sick of being taken for a ride, even more now, when I need treatement, and I still have to pay outrages amounts!

I will look into the companies you gave me and see what they say. I also found them on line, but without a prescription, I am sure I can't do anything right now. I will see my dr on Tues, Nov 2nd and talk to him about all this. May I ask when you had this done? Things have changed quite a bit and ins companies are erasing the name of the expensive drugs off their lists that they previously covered. I looked into prices but so far, the best I found on line was #39 and it was for the generic, I think is called Ceftiaxone or something like that. My insurance said that my copay is $100 per injection--maybe they are actually making me pay for the difference for the nurse and they actually cover nothing. The infussion company that my dr or the ins (not sure who) set this up with, said $90/day+$40 for suplies/day. This does not make any sense. I feel everyone is overcharging me and taking me for a ride!
Thanks!
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