Since medical is down thought I would post here. Got my picc line in yesterday and am waiting now for my nurse to come and give my my first dose of Rocephin (? - dont know if I am spelling it right.) Anyway, thought I would see if anyone has any words of wisdom on this?

I tried to post in medical to see if this is what others have experienced, but it is still down!

As far as the actual treatment with Rocephin, I had no problems other than 2 significant herxes. I was doing better by the end of the 56 days, but unfortunately, symptoms returned quickly after picc line was pulled.

Hopefully, you have a much better LLMD and he will treat you for cyst formation and do appropriate follow up with orals.

I hope everything goes smoothly for you. I really had no problems tolerating the meds other than they make you feel very tired.

Good luck!

It's also important to have ultrasounds done every month or two to just make sure nothing's forming. I developed a lot of stones and lost my gallbladder after four months of Rocephin. I'm on it again now, two years later, and I suspect that I may have sludge or stones in my bile duct (just had a CAT scan, haven't gotten the results yet) so even if you don't have a gallbladder, you can still have problems like this from Rocephin.

I don't mean to scare you but it's a very real complication.

Other than that, I can advise you to take it easy, don't try to push yourself when you're first on it especially. Take it easy, give yourself time to heal. If you herx, don't push yourself through it without talking to your doctor. The cyst aspect is also something to keep in mind and Flagyl should be added at some point but, in my opinion, not at the beginning. Wait and see how it goes at first. If the herx is really bad, don't add Flagyl right away, wait it out and add it when the herxing lets up a little bit.

That's it. I probably have some other advice but can't think of it right now. Good luck!

--Annie

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``The best way out is always through.'' -Robert Frost

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quote:

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Originally posted by Pitnum:
Sit down when you eventually get the bill!!!
It will blow mind! I finished 56 days of IV rocephin which I infused myself with a portable pump. The bill from the LLMD was $30,000.00!!!!

I tried to post in medical to see if this is what others have experienced, but it is still down!

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I do believe that price, 30K for 56 days, is escessive.

I did Rocephin (before seeing an LLMD) for 4.5 months. The weekly cost for the actual drug and the IV supplies was $918.00 per week.

From what I've read the majority of LLMDs just hold their heads above water and don't take that sorta advantage of their patients.

Is your's really an LLMD?

Chip, my husband, infused me and changed my dressing after a couple of visits from Home Health. We just could not afford the nurse to come out every day to infuse me when the process is so simple. We didnt' have insurance then and only Medicare now.

Words of wisdom, be prepared to be on Rocephin, well, basically forever, for no matter how long you are on it, when it is taken away, the majority of folks relapse. The ole feel good while on but, not when off syndrome.

As someone above said, watch out for you gallbladder and liver, for Rocephin is very hard on those two organs in particular.

As you can see, I am not a big fan of Rocephin for when I kept searching for the reason that I am not well today, despite, 4.5 months of IV Rocephin and then the next 18 months of more different antibiotics.

Then I found that Rocephin sends the bacteria into the cyst form where they will just hang out and not cause you nearly as many problems as they were causing while in the spirochete form, only to come back out a play hard on anything or part of your body after Rocephin is removed. This is putting a relapse simply.

But, some do swear by Rocephin, I sincerely hope that it works well for you. I know how you'll feel while on it, but, do come back after you've been off of it a month or two and tell us how you feel then, ok?

For many of the posts here with positive things to say about Rocephin, are written while the poster is still on Rocephin thus reporting the I'm better theme.

Pittnum, your statement, I was doing better by the end of the 56 days, but unfortunately, symptoms returned quickly after picc line was pulled. I see repeated over and over. Glad you are doing followup orals. I assume that is what you were saying.

Have a nice day...

Rosemary

Herx are very common but dont give up and do think your getting worse or the meds arent working. Because if they werent you wouldnt feel worse.

They say you get worse before you get better.

I think both myself and the insurance company have to seriously persue this issue. Is it normal for the LLMD to charge $5000.00 for a week of infusion when I did it myself?

I would not go back to this doctor if he was the last LLMD on earth. Not sure where I'll go from here, but at least I won't be adding another 30 grand to my debt!

Thanks for your responses and for letting me blow off some BIG time frustration. I hate to be scammed! We shouldn't have to worry about that from supposed LLMD's!

Something is surely amiss hear as compared to my cost I posted above.

Yup, that's what it costs.

I was on amoxy for 6 months and it worked FAST and wonderful. When pulled, I relapsed and it took me a year and two LLMD's later to go "DUH, this is why". In my case, it pushed the lyme into my TISSUES and I needed a TISSUE concentration abx to pull myself out of the hole I was in. ( and it worked, and all was good, and on the 7th day)

oh.. got carried away.

So the advice? GET ON FLAGYL, TINDAZOLE OR PLAQUENIL NOW. Some of those kill the cystic form, some prevent it from occuring.

Yeah its true, dang right true, rocephin causes cystic formation.

What doesnt? Anyone at the end of therapy should be on cyst buster, unless they like relapses.

Uh, by the way, if my posts posts three times, its because Lymenet is telling me "we have flood control activated, you cannot post within 60 seconds, even though this is my first post in oh say 3 days?

"GET ON FLAGYL, TINDAZOLE OR PLAQUENIL NOW. Some of those kill the cystic form, some prevent it from occuring. Anyone at the end of therapy should be on cyst buster, unless they like relapses."

Would you advocate that if a person is on Plaquenil prior to Rocephin IV treatments that they should stop the Plaquenil when they switch from oral antibiotics to Rocephin IV? Then restart the plaquenil towards the end of their Rocephin IV treatments or wait to restart the plaquenil once the Rocephin IV is completed and oral antibiobics are restarted? Another question I have is if the plaquenil is used from the start of Rocephin IV thereapy, does this make the hexring too severe.

Before we bite the hand that feeds us...

Let's look at a few facts first.

Back in the mid-1980's I was prescribed 1 gram of Rocephin a day. I had a home health care nurse.. and all the IV supplies were sent to me by the company.

I did the IV's myself.. but the nurse came several times a week to change the infusion site... check my vitals, etc.

I used the premixed stuff which was shipped directly to me... didn't know I had a choice.. IF I did... back then.

I used a simple heparin lock.. and an IV drip pole.

The Rocephin alone .. without ANYTHING ELSE... JUST the medicine itself... was a whopping...

$2,000.00 per DAY!

That also didn't include the weekly visits to the docs office.. the blood work galore.. the supplies to infuse.. the nurses aid who had to help me bathe, wash my hair, fix me food, and clean my house.. or the registered nurse.

Or... the other meds I was on... the physical therapy.. braces for my arms and legs... etc.

Adding in everything... I estimated the total cost for ONE month to be approximately..

$83,700.00 per month for IV Rocephin and treatment for Lyme disease.

And I had a DUCK doing my treatment.

Later on.. when I was prescribed IV meds the second or third time.. can't remember which time...

They hooked up a pump because it had to be infused 4 times a day. That jacked up the cost BIG time.. and the next time I wasn't allowed that luxury by the insurance company.

One time I had IV meds that came in a small bottle that looked like a baby bottle and it was pressure-fed to my line. It was small enough to fit in my robe pocket.. much nicer than dragging around an IV pole.

The cost of that went thru the roof.. according to my insurance people.... and soon I was forced to go back to my old IV pole and drip method.

Rosesisland has spent hours.. probably longer.. looking for bargins.. which is wonderful. Her prices would be MUCH cheaper than what most of us are charged if we have insurance. I am thrilled for her.. and hope more folks take her advise on saving dollars.

Anyhow...

If the treatment cost me that much back then...

What you were charged does NOT sound out of line.

Just thought you should know before anyone hits the war path.

Thanks for all of the great information I really appreciate it.

As it stands now a nurse came to my house last week and put in the picc, went to the hosp for the chest x-ray and we started the rocephin on Friday. Insurance agreed to 6 weeks...(we'll see how that goes).

For the time being I am infusing myself and the nurse will come once a week to change dressings and do draws for labs.

Felt absolutely AWFUL on Saturday, little better Sunday and yesterday - today is the best it's been in about 6 weeks.

As the cyst busters go we have determined I can't handle Flagyl but the LLMD wants to try me on another - starts with a T? (sorry can't remember the name)but is holding off to make sure the Ro is having a possitive effect first.

Saw my PCP for the first time in a year last week and she is prepared to go along with the diagnoses for now - but (surprise,surprise) wants another WB from Igenex because my first was

IGG - Negative (band 41 and 30 possitive/ 23-25,39,41,45,58,66 all equiv)

IGM - Equivocal (23-25, 45, 66 possitive/ 30,39,41,93 equiv)

Any opinions? Curious what anyone else thinks on those results.

Have an "up" day!