SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I am interested in understanding more of people's experiences on IV Rocephin. If you could answer the following, I would appreciate it.
1) How long did you do IV Rocephin? 2) Did you do any other IV treatments? 3) What % improvement did you have while on IV Rocephin? 4) Did you relapse after stopping? 5) If you relapsed, to what point did you relapse?
a) Back to where I started IV b) Worse than when I started IV c) Some, but still was better after IV
6) How long have you maintained any gains from IV therapy? 7) Did you do 2g x 7d or 2g BID x 4d a week? 8) Would you do it again if you knew then what you know now?
Thanks in advance for your comments.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
1. IV Rocephin for 30 days. 2 grams daily, 7x/week. 2. Did not appreciably help that I could tell. 3. I had (unknown) babesia WA-1 which may be why. 4. Would I do it again? In a heartbeat.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
1) How long did you do IV Rocephin?
9 months.
2) Did you do any other IV treatments?
no.
3) What % improvement did you have while on IV Rocephin?
from bedbound with gross neurologic Lyme & incipient dementia to almost normal- -10 to 95% add in Babesiosis tx, which like Michelle M had not been done before IV, and I went to 99%.
4) Did you relapse after stopping?
No, I transitioned to orals.
5) If you relapsed, to what point did you relapse?
Have kept all gains for 8 years now.
6) How long have you maintained any gains from IV therapy?
Have kept all gains for 8 years now.
7) Did you do 2g x 7d or 2g BID x 4d a week?
2 grams once a day for 7 days for 9 months.
8) Would you do it again if you knew then what you know now?
Yes, absolutely. It saved my life.
-------------------- 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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No but I am going to inquire about Magnesium IV and Levaquin IV.
3) What % improvement did you have while on IV Rocephin? Saw no significant improvement till December of this year which would put me at five months into Rocephin IV treatment.
4) Did you relapse after stopping?
I have not stopped yet and expect to continue for nine to twelve months.
5) If you relapsed, to what point did you relapse?
I just had gallbladder surgery 10 days ago and felt a slight relapse from the surgery. I feel however I'm making those gains back. I'm back on my elliptical doing 30 minutes daily.
6) How long have you maintained any gains from IV therapy?
Prior to gallbladder surgery I felt I was 90% back to where I was prelyme diagnosis in June of 06.
7) Did you do 2g x 7d or 2g BID x 4d a week? 8) Would you do it again if you knew then what you know now?
I am currently doing 2grams every single day, seven days a week.
I also am at Tindamax 1000mg since early October. I would absolutely do it again even after losing my gallbladder.
Scott,
I did one year of orals and six full months of bicillin at 4.8 million units a week prior to starting Rocephin on July 1st. I believe I was already at 70% before starting the Rocephin IV. From what I've heard and read, the Rocephin IV turn the corner moment comes around the 4th-6th month. In my case it took that long but the improvement was dramatic and noticeable.
Barb in San Francisco
Posts: 281 | From san francisco | Registered: Jun 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
1. 30 days 2. No 3. 25% 4. Some, but still was better after IV 5. started to feel worse after stopping the Rocephin 6. I think I would be a lot more ill if I hadnt had rocepin
Yes, 2 months after Rocephin, started IV Vitamin C, magnesium, B5, B6, B12, glutathione. Once per week, still getting them.
3) What % improvement did you have while on IV Rocephin?
Neuro - 75% improvement
4) Did you relapse after stopping?
I backslid some, but not alot
5) If you relapsed, to what point did you relapse?
c) Some, but gained back that ground already
6) How long have you maintained any gains from IV therapy?
So far, since Sept. 07 - 4 months
7) Did you do 2g x 7d or 2g BID x 4d a week?
2g X 7d
8) Would you do it again if you knew then what you know now?
Yes
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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WildCondor
Unregistered
posted
quote:Originally posted by SForsgren: I am interested in understanding more of people's experiences on IV Rocephin. If you could answer the following, I would appreciate it.
1) How long did you do IV Rocephin?
3 months
2) Did you do any other IV treatments?
not at the same time, but afterwards, multiple combinations
3) What % improvement did you have while on IV Rocephin?
HUGE...about 75%
4) Did you relapse after stopping?
No, because I started IV Zithromax afterwards plus other orals with it.
5) If you relapsed, to what point did you relapse?
a) Back to where I started IV b) Worse than when I started IV c) Some, but still was better after IV
6) How long have you maintained any gains from IV therapy?
Yes, going on 6 years.
7) Did you do 2g x 7d or 2g BID x 4d a week?
Stared with 2g/daily, then 4 g daily...then added IV Zithromax
8) Would you do it again if you knew then what you know now? Of course, but I believe combinations are essential. Must treat co-infections. I do not believe that one single antibiotic at a time is the answer, it has to be combinations and for extended periods.
This is an interestting poll I'm very curious to see what others have experianced. Thank you for starting it.
1. 70 Days First Time 2005 60 Days Second Time 2006 2. No 3. First Round 80% Improvement Second Round 50% Improvment 4. Yes - Big Relapse After First Round Found Co-Infection After Second Round 5. Better Than Before Starting IV. Relapse Brought On Different Symptoms I Had Not Had Before IV. 6. First Round 3 to 4 Months Second Round 6 Months 7. First Round 2g 7 Days A Week Second Round 4g 5 Days A Week 8. Even Though It Cost Me My Gall Bladder The Over All Gain I Got From Rocpehin Was So Enormous I would Not Hesitate To Do It Again.
Patrick
Posts: 142 | From Florida | Registered: Oct 2005
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After Rocephin IV Claforan with no results and presently on IV Doxy
3) What % improvement did you have while on IV Rocephin?
slow but steady, memory, brain fog, etc. improved. IV Doxy is showing a faster response.
4) Did you relapse after stopping?
Stayed the same when on Claforan.
5) If you relapsed, to what point did you relapse?
a) Back to where I started IV b) Worse than when I started IV c) Some, but still was better after IV
6) How long have you maintained any gains from IV therapy?
Still on it. 7) Did you do 2g x 7d or 2g BID x 4d a week?
2g once a day
8) Would you do it again if you knew then what you know now? YES!! Taking oral abx at the same time as IV
Posts: 488 | From NY | Registered: Oct 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
1) How long did you do IV Rocephin?
One month first time
Three weeks second time- became allergic to it.
2) Did you do any other IV treatments?
Yes. Penicillin 2 times.
3) What % improvement did you have while on IV Rocephin?
Zero.
4) Did you relapse after stopping?
Yes.
5) If you relapsed, to what point did you relapse?
Worse than when I started IV
6) How long have you maintained any gains from IV therapy?
2 months max.
7) Did you do 2g x 7d or 2g BID x 4d a week?
1 gram 1X day for one month. Doctor then realized he messed up the dose and re-treated with 2 grams a day for three weeks until the allergic reaction hit.
8) Would you do it again if you knew then what you know now?
posted
1) How long did you do IV Rocephin? 6 months, pulsed 4 days on, 3 off. 1 gram infused twice a day.
2) Did you do any other IV treatments? No.
3) What % improvement did you have while on IV Rocephin? About 50%
4) Did you relapse after stopping? No, I went immediatly to 10 months of LA Bicillin shots in the butt and orals.
5) If you relapsed, to what point did you relapse? N/A
a) Back to where I started IV b) Worse than when I started IV c) Some, but still was better after IV
6) How long have you maintained any gains from IV therapy? A year and a half and still on antibiotics.
7) Did you do 2g x 7d or 2g BID x 4d a week? 2g BID x 4d a week.
8) Would you do it again if you knew then what you know now? In a heartbeat. I am grateful I got my meds paid for! I am now 75% better overall and fatigue has improved 80%. I look to get even better, now with bart treatment and possible babs treatment in the future.
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