posted
I would like to hear from people who had rocephin I.V or even I.M - I'm in Maine, but willing to drive to peru or London to have Rocephin prescriptions. Lyme is taking our life away. Any information about cost - good doctors - if it work ?? I would appreciate.
Chris
Posts: 4 | From maine | Registered: Dec 2007
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posted
I.V Rocephin I think literally saved my life. By the time I was finally diagnosed with Lyme I was so sick that oral abxs didn't seem to touch it. With in three weeks of being on I.V Rocephin I came roaring back to life. It was a miraculous turnaround but unfortunetly short lived. My doctor at that time made two mistakes. The first one was after 60 days even though I was still having symptoms, much much less severe than in the beginning but symptoms still the same; he stopped the treatment. The second mistake was he did not give a cyst buster at the same time as the Rocephin. Some research shows Rocephin drives the spirochetes into cyst form and a cyst buster is needed, which I did not know at the time. The result was I slid into a total relapse over a 4 month period.
From my experiance I would say definitely do the Rochephin but be sure its for a long enough period and that you use a cyst buster at the same time. One other note of caution is Rocephin is very very hard on your gall bladder. Many people including me have lost theirs due to the Rocephin. I had to have mine removed after undergoing a second round of the Rochephin following the relapse but it was worth the price to feel so much better.
Patrick
Posts: 142 | From Florida | Registered: Oct 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I am like Patrick- orals didn't work for me anymore and IV Rocephin saved my life!!! ALWAYS transition from Rocephin to orals and then don't go off until 3 months symptom free, that's the general rule... IV Rocephin was wonderful to me.
But IM is safer. IV should only be if you can't do anything else!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
My stomach couldn't handle the orals so I believe IV Rocephin saved my life, too.
Just keep up the probiotics to keep away raging Candida...but any experienced LLMD will let you know that to be the case.
Blue Cross covered my picc line but I do not think Medicare does.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I was on 9 months IV Rocephin and have kept my gains for 7+ years now-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
iv'e been on rocephin, on and off, for 2 years. it has been the one med that i instantly notice a better feeling from.
i started losing my direction while driving places i go every day. suddenly they became foreign to me. rocephin, within 2 weeks, changed all that into alittle better, for me.
typing, and thinking becomes better also, after being on Rocephin.
i started with 5 times a week, 2 days off.
\then i graduated to 2 times per day, 4 days per week in a row, 3 days off. that was a doosy on my behind!!! very difficult because it hurts like crazy.
i would completely have to go someplace else in my head, put on a good "shot song" ... loud... remember to breath, and trust the person who gave the shot! (very iMportant)
i dont have insurance, or i would go on I.V.
THE CHEAPEST... place i have found is Walmart... but here is the catch.
You must locate the walmart in the poorest neighborhood (i dont know any better way to say that) and then those prices on meds including rochephin, will be cheapest!
I googled the different walmarts in my northern cal. areas. then i called and asked for the prices on the generic form.. CEFTRIAXONE each walmart, depending on the zipcodes, had a different price! low and behold, the cheapest one was only 5 miles from my apartment. so all this time, i was spending 1050. per 30 vials from a place in los angelos
right down the street from me, i found it for 427. per 30 vials... IT GETS BETTER... I have triple AAA car insurance, and you must ask them for the aaa discount, and with it, i pay... 331. per 30 vials!!! this is a god send!
i nearly kissed the pharmacy dude when he said the price! (not that crazy though) I did, however, do a jig in the isle when taking out all the cash i had to my name, simply knowing how it would make me feel after that soooo painful shot!
even at that low price, i cannot afford to always get it... but the overall feeling is so much better.
I lost my gallbladder, but as many say, i dont miss it.
Honestly, i dont know if i lost my gallbader to the rochephin because i had only had maybe 5 shots before my first gall attack..'
Q.-does anyone know how much Rochephin it takes to ruin a gallbladder?
5 shots seems to little.?
...and oddly, i had a husband sprinkling rat poison on my food at the time!!!(yes, i doesn't get any better then that, huh!)
so who knows... either way, rochephin works for me.
-------------------- well i know a disease that these doctors can't treat, you contract on the day you accept all you see... Posts: 97 | From nor cal | Registered: Oct 2006
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I took the Rocephin the first time for 60 days at 2mg a day 7 days a week and as I said it did wonders but was stopped to soon. I was still experiancing symptoms, much milder but still there when the doc said no more. I slide four four months and then bam!
I found another doc and he put me back on the IV Rocephin 4mg a day 5 days a week for another sixty days. This time though he had me on a cyst buster, Tindamax; and followed up with oral abx's. It was during this second treatment my gallbladder gave out and had to go but as I said it was worth the price.
Like californialyme I have kept my gains this time from the Rocephin but with the Lyme knocked down two co-infections popped up which I've had to treat for this past year. The first co-infection sprang up about four months after the last Rocephin treatment and the other showed up a few months after treating the first one. They were Brucella and as Dr. B calls it BLO. I hope this helps.
Patrick
Posts: 142 | From Florida | Registered: Oct 2005
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posted
Rocephin has defintely helped me regain my life. I was on orals for one year and six months ago went on Rocephin IV. I was at 90% of being back to how I felt prelyme diagnosis until I had gallbladder surgery one week ago.
The Rocephin just helped me turn another corner in this battle. It is not the magic bullet as I think it always takes a combination of antibiotics to get the remission we all are looking for.
I have a friend who took it for six full months and she completely relapsed. I do know that she took it alone and from what I hear and read it should always be taken with a combo of other antibiotics.
I did however have gallbladder surgery a week ago which has brought me down to about 60 or 70%. I expect that I'll make up the difference in a few months. I honestly didn't feel a huge difference on the Rocephin till around the fifth month. And a real difference at the sixth month.
My goal is for a year barring any complications. Having done the orals and the IV and the shots I'd say the IV is a piece of cake. It takes one hr a day to do it and then you're done.
I would also shop around. Go to your pharmacy and shop other pharmacys. I started out paying 1300 a month for it and then did some shopping around and found Walgreens covered me under my insurance plan. My co pay was 256 a month.
Good luck.
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
LymeToo, reread my comment, of course I transitioned to orals, everyone should!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Duh me. I think I left my brain out in a field in Texas!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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jamescase20
Unregistered
posted
When I caught appr. bart speices 1, I think rocep saved my life in acute phase. But it didnt kill it...and I went on chronic for 6 years afterwards.
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