I'm on my 4th week of IV Rocephin (4 grams a day, tuesday-friday, started with 2 grams the first week). Im feeling horrible with muscle twitches, heartpounding when I lay down, major fatigue, dizziness and increased derealization. All bloodtests and EKG are all fine.
Im also supposed to do Zithromax and Minocycline, but feel like my body is getting enough abx already.
Is this sideeffects? Herx? Both? Can I expect a turn soon?
Can any1 please write their experience with this med? Has any1 been on 4 g a day? Seems like every1 gets 2...
Thanks!
Posts: 39 | From Denmark | Registered: Mar 2009
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MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
hi muperson, I was on 1 gram. The only side effect I had was very low B/P. I liked Rocephin.
It made me feel like me again. Good luck. I'm
sure someone will be here soon.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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posted
I've been doing 2 gr a day since last Aug with 1 month break. No side effects that you mention.
A few months back I did 2 gr 2x a day, 4 days on 3 off. Plus rifampin, mino, and malarone 2x a day. That was the month from hell for me.
Had D like crazy,no appetite at all, and couldn't remember anything. Did alot of walking in circles.
Not that it's been a whole lot, but I have had more improvement from rocephin than any of the orals. Don't forget, everyone is different.
Posts: 847 | From upstateNY | Registered: Dec 2007
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djf2005
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posted
detox?
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
months of 4g of rocephin helped me a lot! wanna try it again soon.
Posts: 226 | From earth | Registered: Sep 2007
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Haley
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My 4th week was the worst. Then I started to feel better.
Posts: 2232 | From USA | Registered: Aug 2009
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canefan17
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Anybody go into remission from IV therapy?
I've heard from alot of people who do rocephin for 14 weeks and are "all done."
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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lightfoot
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posted
IV Rocephin gave me back my life.....4 grams per day for a very very very long time. Also tolerated some orals at the same time...Zith and plaquinel.
It took about three months before I started to get better. It was easy and painless regarding herxes.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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canefan17
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I wonder why the herxs are typically non-existant with IV Rocephin.
Does it drive the sketes into cyst that fast.
Either way... I've heard a lot of people having success with IV therapy.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
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posted
This is my 4th time on iv rocephin. The depersonalization is unreal. The three times I
got back to my life - started on 1/5 this time around and its not doing it as quickly as the
other 2 times. The first time it took nearly 6 mos. Joint pain, heart pound issues, also on
zithro and doxi, but the mind stuff is the worst
symptom for me. Good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
This is my 4th time on iv rocephin. The depersonalization is unreal. The three times I
got back to my life - started on 1/5 this time around and its not doing it as quickly as the
other 2 times. The first time it took nearly 6 mos. Joint pain, heart pound issues, also on
zithro and doxi, but the mind stuff is the worst
symptom for me. Good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Putnam - If this is your 4th time on Rocephin, do you think it will stick this time?
I have been off and on Rocephin. I felt better on it but I began to develop systemic yeast and I was worried about gall stones.
I also thought that if the infection comes back every time I stop the drug it wasn't making much sense to stay on it. I didn't know if the bug had become resistent to the Rocephin.
What is the usual time frame that people stay on it to get well?
Posts: 86 | From California | Registered: Oct 2009
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
FWIW I would personally not invest the time, risk, $$ again in IV rocephin.
My oldest was on it for 5+ months and improvement finally came in month 3 (12+weeks) which was great.
But once she was off it, she slid right back down to square one. I know everyone is different and IV rocephin could be the catalyst for health for some but I just don't think it's the end-all, be-all.
The protocol that finally pushed my dd towards wellness was Schardt--diflucan/penicillin rotations. But we know this isn't the end-all, be-all either. It just happens to be working for her at least for now which is good enough for us.
Some normalcy has returned to her life after years of sickness.
Everyone is different and there are so many other things to take into account.
As a mom I feel for all parents of sick kids. There is nothing worse than seeing your child/children suffer.
muperson I am sorry that I veered off-topic here. 4gms rocephin seems like a lot to me but I am not a doctor.
Please get yourself evaluated for coinfections.
Best of luck to you.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
I'm pretty sure I did 4g too, but after 2 weks my llmd discontinued the med due to new DX of gallstones. I developed major GI symptoms. I just had my gallbladder out this past July. I doubt I will ever want to try rocephin again.
-------------------- Bullsye rash: 1994, tx w/ ABT, Symptomatic:1999 Hospitalization: 2004 Equivocol results (specialy lab) resulting in chronic use of ABT, herbs, etc ever since. Severity of symptoms continue to worsen intermittingly. Posts: 140 | From maryland | Registered: Oct 2006
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posted
9 1/2 months, and when I stopped I took a nosedive. The fatigue was overwhelming.
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
I am on my second round of IV rocephin. The first was 4 weeks rocehin 2gm a day with nothing else...no cyst busters. Relapse shortly after stopping.
Now I am on IV rocephin, 4 gm 4 days a week, zith 500mg/day and pulsing flagyl every weekend. I am having MAJOR full body muscle twitches and heart palps.
For those of you that have done rocephin and relapsed...did you just do rocephin or did you also use a cyst buster? When you came off rocephin, did you follow it up with high dose orals or anything? I feel like rocephin is a great lyme drug, but should not be used alone. It will encourage lyme to go into cyst or L-forms; therefore it is recommended to use rocephin in a combination antibiotic protocal.
I am not expecting a cure on this protocal, (altough it would be nice). My expectation is to lower the pathogen load and then switch to orals or IM. I am in no hurry to come off IV.
Posts: 747 | From Utah | Registered: Apr 2010
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posted
Kimmie you are taking the right protocoll just use ursodill to protect you gallbladder and yes Diflucan to controll yeast. Just Rocephin alone for 2 months 2 gr everyday put me in remision but relapsed shortly after.
Posts: 482 | From Nebraska | Registered: Feb 2010
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posted
Maradona, thanks for the encouraging words. Funny thing is, I felt so good on just 2gm rocephin daily, 90% better. Than by upping the rocephin dose and adding in all the others, I feel worse. (still better than before treatment thank God). I have been terrible with my diet...that is changing today and I am adding in GSE. Thanks again
Posts: 747 | From Utah | Registered: Apr 2010
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