posted
I've been on about 6 weeks and want to extend my IV Rocephin. The doctor originally said 8 weeks was the maximum time.
[ 31. December 2005, 09:33 AM: Message edited by: coach ]
Posts: 146 | From New Jersey | Registered: Jun 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Coach, are you improving on it ? My son did 12 weeks of rocephin IV and another 10 weeks of IV zithromax. The zith worked great, much better than the rocephin.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Its week 13 for me and i am improving very slowly.Im hoping for at least 6 months.Ive seen three LLMDs and they all said at least 4 months for me but Im in bad neuro shape.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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breathwork
Frequent Contributor (1K+ posts)
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posted
I had nine months of IV Rocephin with oral zithromax added. It saved my life but didn't bring me all the way back....Then we realized that I had a new version of babesia...the WA1 variant...This was years ago.
I stopped IV and treated the babs for nine months, almost completely well, then bitten again, and again....
Now on orals and don't expect IV again. My neuro symptoms are nothing like they were when we began IV. I took IV meds as long as I was improving, until I plateaued....then we looked for other reasons why I wasn't improving.
Posts: 1062 | From CA USA | Registered: Jan 2001
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I'm finishing week 18 tomorrow. Two weeks left on present prescription with refills.
I've been making slow progress, but it's the first real progress I've made. Did orals for months, Babs Tx, Bart Tx, etc..
I'm also hoping to stay on it like Chainsaw Joe. I've had severe debilitating neuro symptoms for over three years. I believe it depends on your symptoms, progress, etc..
For me, I feel like I just got to that "hump". Now I just have to get over it.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
I've been on iv rocephen since April 21. I've also taken orals: doxy, zithromax, biaxin, ketek. No orals right now, but dr. is waiting until after the holidays for the one where you can't have any alcohol while you're taking it. I don't remember the name of it. I've made significant progress on the iv. I think he might end it next week and then try another iv antibiotic. I have had more headaches since discontinuing the ketek, though.
-------------------- "I can see clearly now" Posts: 22 | From midwest | Registered: Dec 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I was on IV rocephin for 6 1/2 months...then the picc line was pulled due to a positive fungal growth on a routine blood draw from the picc.
I made significant improvement on the IV...but that was after 4 1/2 months of it!
Not sure what is next in store for me, but I'm glad to have come this far!
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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david1097
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Member # 3662
posted
A lot of people with uncomplicated Lyme get etter with 8 weeks of IV after which they may switch to orals and taper off from there. Your Dtr knows your case and 8 weeks is more than is "recommended " by "stadard( and out of date) treatment guideline" so he must know what he is doing. If you go off the IV just be on the watch for clear signs of relapse. If these show up you will know it and must do something about. Relapse is clear if there is a clear systematic worsening of symptoms. I you interceot a replase early enought it is not to bad, however it if go4es to far it is extremely diffivult to dig out from it ( This I know from experience)
If you have other infections along with Lyme it may be a much different situation but the only sure fire way to see if you have any thing else is to interupt your current treatmetn and see what happens.
Another interesting note is that after treatment stops it does take some but there is recovery for many months. I have no idea why but I have seen it in some others as well as my self (unfortuately I had multiple - then undetected co-infections - and relapsed very badly with the co-infection coming back in force followed by re-emergence of Lyme.)
Make sure to keep accurate records of your progress so that you have objective signs of relapse (ie going backwards). This is crucial to being able to get insurance coverage for more IV. Even the CDC says retreatment is indicated in case of relapse so no one can argue the point if you have positive and objective proof.
Good luck
Posts: 1184 | From north america | Registered: Feb 2003
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posted
I was on it a year and a half, my son for 2 years.
Like Breathwork, we saw allot of improvement neurologically ..but it did not bring us 'all the way back'.
There is so much more that is essential to rebalance in the body as a result of the infections, the treatments, and whatever imbalances you had before getting sick.
However, yes, many do make gains with extended IV ab's worked into the recovery process... many do well with certain oral ab combos.
Basically, if you are responding to this med via IV, I would talk to Doc about staying on while you still see response... or, perhaps..ince this Doc sounds less literate than ILADS MD's.. maybe you would do better to switch to an experienced LL who will assist you in either staying on or transitioning off the IV ab's. Very important to transition well, or you could have a nasty relapse.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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