Topic: IV Rocephin - other IV - how to stop a relapse?
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Hi everyone,
I have been on orals for 10 months now, without stopping them, and LLMD wants me to try for IV.
I had been on orals in the past, but stopped treatment after 7 months both times, and relapsed months later.
SO, what I am trying to find out, for myself, but it may help others is this...
HOW do you prevent a relapse from happening while on IV?
I read that one must be on FLAGYL while on IV Rocephin to prevent a relapse, has anyone been on flagyl and IV Rocpehin and still relapsed?
WHAT is making some relapse, and some not?
IS is that some are not using flagyl along with IV Rocephin? Do you use Flagyl if you use other IV drugs if you are allergic to Rocephin?
I am allergic to Penicillin, also had a reaction to Ceftin, so I could very well be allergic to Rocephin? any comments?
Maybe some are relapsing because coinfections have not been treated, or they just needed longer treatment.
I am looking out for myself right now, VERY much right now, if I get IV, I want it to be
WORTH it.
Any comments greatly appreciated. I am in Canada. Here in Canada, you have to get IV from an INfectious Disease Dr, and am not sure if I can work with my LLMD and INfectious Disease Dr at same time, this way LLMD can give me flagyl or recommend it to ID DR.
thanks,
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi Health,
Sorry to hear you have suffered the relapses. Ugh!
I am not a dr., but it seems to me that the only way to prevent a relapse is to kill enough keets to get your germ load down. and get the immune system functioning for you.
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Rocephin is somewhat notorious for causing Bb to go into cyst form. The flagyl would bust open these cysts for the rocephin to take it out. Many have great success with it.
Relapses are often attributable to co-infections or not eradicting the cyst form of Bb.
In my expereince and just a personal theory but I believe Bb when it crosses the blood brain barrier hides out and it can take some time for abx to cross the BBB. People may treat until their lower extremities and torso are free of atrophy and pain. However, the treatment time may not be adequate to cross the BBB and it then reinfects other bodily systems.
My eveidence for this is my son who had lesions in his white focal matter at the onset of disease, 6 months into treatment and was only eradicated after a year. This was all documented via MRI.
Char, I tried to PM you but your inbox is full.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I started treatment with just orals also...relapsed big time...
All the reasons given you about why we relapse are possible...
Not enough research as to a definite answer...
I think flagyl is a necessary abx to use for cyst busting...
Personally I might try clyndamicin before rocephin to try and clear out a coinfection or two before hitting the BB...
Just an opinion...but any IV would definitely be worth the effort...It has been for me.
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
I relapsed within 2 weeks of completing IV Rocephin. I was on it for 56 days.....no other meds and no oral follow-up.
Also, I am allergic to penicillin. I went through a desensitization for 10 days (in the dr's office). It worked.....I had no reaction other than a herx.
The Rocephin worked while I was on it. It took a while but I was feeling better towards the end of the 56 days! Just wish I could have stayed on it because now I am back at square one.
Posts: 195 | From NJ | Registered: Nov 2003
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
thanks everyone,
Pitnum, how were you desensitized? Was it through a ND, or MD?
Was it injections?
thanks,
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I was desensitized by the NP (the doctor was in the office) every day for 10 days. I had the Picc line in and each day they doubled the dose.
I had to stay in the office for an hour or 2 to make sure there was no reaction. The med was in a syringe that was injected into the picc line. I worked my way up to the normal size IV bag.
Hope this helps explain things. I'd be glad to answer any questions that I can.
Posts: 195 | From NJ | Registered: Nov 2003
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
how allergic are you to Penicillin?
That sounds very risky if you are very allergic to penicillin dont you think?
My throat swells, eyes swell, from Penicillin, I am not sure if I would take the chance with this with my severe reaction to Penicillin.
I know about desensitising with a ND/NP, I had it done to the oral antibiotics I was doing a few times, I was reacting to them, but not in a life threatening manor.
I felt better after they were desensitized, but I did not have breathing problems with the antibiotics before they were desensitzied, only felt sicky from them.
The machine he used, the ND was called a Mora Therapy machine, was this what your ND used?
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I just got a picc in and had second dose of rocephin yesterday. I had been on 8 months of orals.
I am extremely concerned about trying to make this therapy count and not relapse. (IV is so difficult and if there is something else I can do I want to!!)
My ID doc hasn't mentioned flagyl concomitant to the IV but if I could hear a few stories I would push it with him.
Thanks
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