LymeNet Flash: HELP!! Afraid of new ROCEPHIN dose???????

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»	LymeNet Flash » Questions and Discussion » Medical Questions » HELP!! Afraid of new ROCEPHIN dose???????

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Topic: HELP!! Afraid of new ROCEPHIN dose???????

clueless
Member
Member # 30019

posted

Seeking all Roc Recipients???

Can anybody respond?? Somebody????

Has anyone been on more than 4 grams of Roc per shot?? Am now at 5 grams.... and worried about it.

Only did one Roc IV of 6 weeks before , this is the second round.

I posted this question a week ago and ONE person responded, kind of disheartening!!!

Thanks someone!!

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Change is inevitable

Posts: 77 | From France | Registered: Jan 2011 | IP: Logged |

triathletelymie
LymeNet Contributor
Member # 26456

posted

Sorry, clueless, that you only got one response.

I did 10 weeks of IV Rocephin...I was only at 2 grams once a day though. Your dose does seem high...even Dr. B's Guidelines say 4 grams...

~Tri

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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 | IP: Logged |

clueless
Member
Member # 30019

posted

Thanks Tri.....

that's kind of what I thought too....

currently trying to sift through other research where higher doses were used- haven't found much yet.

Our LLMD said as my husband did very well maxing out at 4- he felt comfortable taking him to 5 grs- with plaq continuing.

Thanks atleast for being that one to respond- maybe people from Pa are just nicer!?? I was born there! ;-)

good luck to you!

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Change is inevitable

Posts: 77 | From France | Registered: Jan 2011 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

I hope he's on high quality probiotics!!! [Smile]

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--Lymetutu--
Opinions, not medical advice!

Posts: 96223 | From Texas | Registered: Feb 2001 | IP: Logged |

sammy
Frequent Contributor (5K+ posts)
Member # 13952

posted

Looks like no one around here has gone over 4grams. 5grams is higher than what is generally recommended but you might as well give it a try. Your doctor must be prescribing it with good reason.

Good luck. I hope that you see some positive results with your dose increase [Smile]

Posts: 5237 | From here | Registered: Nov 2007 | IP: Logged |

clueless
Member
Member # 30019

posted

You are all officially on my Christmas Card List-gluten and sugar free fruit cake to boot!

Thanks!!!

I think our doc here is also responding to initial MRI results-which were clinically significant, active lesions and some other not so great things with a MS dx and ...

POS WB IgG- P41++, OspC (5)- B.Afzelli +,B. Garinii+, B. spielmanii+/ AND IgM- also P41+, P18+++ and also 4 more positive OspC bands listed above which are "European strands" and Bb s. Stricto- "American Lyme".

It's all Greek to me, or French rather. I have to find some more English references in order to understand it better. They also use a point system and give a total number "score"?? Do we (U.S.)do that??

ANYWAY, I am assuming he is hitting it hard for those reasons, only doing plaq and no other co-infection tx at this point. He also had neurolyme sypmtoms really fast.. (or were they ms?)

The more I read it seems like everyone- sorry- many treat a lot of stuff at the same time?? [confused]

dunno?? seems already like a bull's dose...

Lymetutu- we are def upping his probiotics for week 3!!

Thanks again ALL, two fuitcakes for you Sammy!

Best,

Clueless

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Change is inevitable

Posts: 77 | From France | Registered: Jan 2011 | IP: Logged |

sammy
Frequent Contributor (5K+ posts)
Member # 13952

posted

Clueless, you made me smile today [Smile]

I've tried to find a reference for you but have not found any guidelines that recommend more than 4grams of Rocephin daily. What that means is if a doctor uses a higher dose it will be considered an "off label" use. That's not a bad thing, it's just different. The doctor is prescribing what he thinks will best for the patient.

You also asked about coinfections. I have observed that many people do treat for coinfections along with Lyme. You may want to discuss this with your husbands doctor to find out what he is thinking and planning on doing next.

Take care

Posts: 5237 | From here | Registered: Nov 2007 | IP: Logged |

lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561

posted

Most I did was 4 grams of rocephin, my doc double dripped me doing Iv zither the same day. If you do 5, remember your gallbladder. Drip slow so you don't get gallstones. I lost my gallbladder. Good luck.

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He took u to it, He'll you through

Posts: 2837 | From NE. | Registered: Apr 2007 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Good point about the gallbladder. I don't see why the need for 5 grams. Sounds like overkill.

Gluten free fruitcake, huh?? allright! [Big Grin]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96223 | From Texas | Registered: Feb 2001 | IP: Logged |

clueless
Member
Member # 30019

posted

Maybe Gluten Free Fruitcake could be a hot-selling item this year!!!!! yeah, new project!!

Sammy- as I said I think he's (doc) reacting to
MRI results, zapping it into l'enfer. This doc also has a ton of patients with a pos MS dx as well, so maybe that's part of his reasoning.
We are also waiting for Myco, CPN, Erich and some other bloodwork to come back....yeeeehaaaaaaa!

Thanks all- Lyme in Putnam- He's dripping for about one hour each dose.... we could always back it down?
Were you on actigal?

Yes, I know the gallbladder... he's on Delursan-US equivalent of Actigal and I hope as effective! Any other homeopathic or natural stuff he could be taking/drinking? herbal teas? any ideas to maybe ensure that he will have a gallbladder in a few weeks?????? Three more weeks and we are done with Roc- no more I hope!

We are doing a lot of bloodwork every ten days to look at toleration- so far so good, but I think the gallbladder can be tricky. I gotta do some more research on this....

THAT is in between fuitcake trial and error! I think those nasty little dried cherry things are going to be quite a challenge!

Thanks again Lymekids!

;-)

Clueless

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Change is inevitable

Posts: 77 | From France | Registered: Jan 2011 | IP: Logged |

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