How effective have you found rocephin to be?

He also said he is unsure if I have lyme, but I definitely have autoimmune problems.

My symptoms are mainly nuerological--jello legs, off balance, myoclonus, some vertigo. No pain or cognitive problems.

I have tried amoxocillin, biaxin, zithro, flagyl, tindamax, and minocycline. I felt tired on zithro and flagyl, upset stomach on all of them, and dizzy on minocyline. Don't know if these qualify as herxes or not.

Thanks for our replies and advice. hiker
 

Do you have Lyme-specific bands on the Western Blot?
 

Lost my gallbladder less than a month after stopping the IV.

For me, the results of the Rocephin were not long lasting and today I am fighting with ketek and cedax.
 

I would infer from the protocol that your doing that the idea is:

First crack open the cystic forms with the flagyl, and tinidazole for the purpose of exposing smaller-sized spirochetal forms to the immune system, AND the subsequently given rocephin.

Secondly one or more of the tetracycline class of antibiotics are supposed prevent cyst formation. I don't know which, if not all of them.

So, it seems like the concurrent intake of minocycline and rocephin are to prevent, cystic formation thereby keeping them in sprochetal and forms,for attack by the rocephin.

This seems to be the doctor's strategy, which seems to me to be a pretty sound one.

I'm not a healthcare person, but this sounds good.

So, I sure hope it helps! I would think he knows what he's talking about....

Tina
 

I did hit a plateau though...didn't get as well as my doc wanted...so he tested me with a brand new test (new that month several years ago) for babesia WA1...I was off the charts positive for babesia WA1. All of my babesia microti tests were negative.

The belief is that babesia must be treated before treating lyme...This is a general belief, there are exceptions...like when a person is so sick that IV is clearly the first choice...

But one tends not to get as well on IV if there is an underlying babesia infection.

Now my doc treats babesia if there are babesia-like symptoms...He believes that there are strains out there for which there are no tests yet. He has treated lyme patients who would only get so "well", then he would treat for babesia even if blood work was negative, and they would finally improve.

So it's a dance, a judgement call, as to when to treat what, based on patient response and symptoms more than just bloodwork.
 

quote:

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Originally posted by breathwork:
...He believes that there are strains out there for which there are no tests yet. He has treated lyme patients who would only get so "well", then he would treat for babesia even if blood work was negative, and they would finally improve.

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Right.

pq....Hiker's talking about two different drs here.

My concern on the Rocephin is the relapsing I hear about all the time. It must be followed with flagyl and I think some drs treat with flagyl at the same time as the Roc.

I've had good experiences with rocephin, and heard good recovery stories from others. Because I had co-infections, though, it never completely worked, I always relapsed.

So if you have not checked this out yet, make sure you've gotten rid of anything else that might interfere with your rocephin treatment.

As you have surely read by now, there's an advanced version of zith on the market called ketek. Enough people have responded well to it that it seems okay to recommend. Although it might be too strong to take with minocycline.

A disclaimer here: my current maintenance treatment is omnicef/ketek/flagyl, so of course I love it and go on about it. But I'd go on rocephin right away if I was sure my babs was gone.

I did almost lose my gallbladder because of rocephin, though. And with your current drug regimen--especially flagyl--you've really got to hit the yeast. Also, someone recently wrote about staph infections getting out of control when you take heavy abx. These are all problems you may want to hit before shelling out the money for rocephin, and putting in the time and effort it will take.
 

Went back on Rocephin + Mepron and Zith and regained my life. It was a turning point for me, until my vein gave out & I had to stop.

Now that I think we have nailed the Babesiosis, I would do Rocephin again, if needed. My Dr. does not want me on IV though.

Bc
 

one month doxy for erichlia.

one month levaquin for bartonella.

4-6 months minimum of mepron, biaxin and artemesia.

iv rocephin can be started during the time of babesia treatment.

rocephin is usually followed by either bicillin shots or ketek, either one with flagyl.

i did 10 weeks rocephin when first diagnosed a year ago. did great. but relapsed (and subsequently got worse). treating for co-infections and back on rocephin now.
 

Rocephin really beat the crap outa the lyme and sent me into the hospital during my first and ONLY herx. a month after 2 months of rocephin, almost lost my gallbladder too.

I thought there was a better IV med now that doesnt crystalize in the gallbladder?

Then my symptoms got better for 4 years. Relapsed recently. Probably becasue of Babs and other co-infections. Wish we knew that then. Also perhaps it turned into the cystic form? I couldnt take Flagyl....interesting thing happened to me...I actually DEVELOPED a cyst in a not so good area. I didnt understand the cyst-lyme thing then...I wonder if there is any connection there?
my 2 cents. Good luck! Trails
 

How did you prevent loss? What symptoms did you notice, and did your doc then take you off of rocephin till those resolved, and then put you back on?

My LLMD wants me to go on IV Rocephin, and I'm so scared. I don't want to lose my gallbladder due to rocephin, only to have a relapse a few weeks later.

I've been on orals since Oct 2003 -- amoxy, biaxin, mino, ceftin, flagyl, cipro, & now zithro. I'm 80% improved from when I started and got back to work full-time this year. Do you think the possibility of another 10% improvement is worth the risk of loss of gallbladder, especially when so many relapse anyway after rocephin? Or are there other orals you would try first?

I am feeling terribly stressed about this decision -- I have a 10-week window that would be a good time to try it if I'm going to. But I've got to decide this week.

What would you do?
 

Would you risk it again, if you already were 80% better and back to work on orals?
 

It saved my gallbladder last year. I was just on orals, but had been for 4 yrs. I didn't have any problems on the drug as far as side effects either.

I was scheduled for surgery and then TXLymeMom here on Lymenet suggested trying the Actigall. The rest is history.

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oops!
Lymetutu