I'm back here after a two year reprieve. I had severe neuro lyme in 2006 and treated for one year with orals, one full year IV Rocephin.
All of my symptoms disappeared.
It appears my lyme may be back. I have some old symptoms (myoclonus, tremors) but a new symptom is making me think it might not be lyme.
I have severe nerve pain bodywide. During my first bout I had bodywide twitching for one year, I did not have any nerve pain.
Now my nerves are involved and it feels like I'm being stabbed all day long. I also have deep boring pain in my feet and hands and thighs.
The good news is I'm still able to sleep all night with 5mg flexeril.
I'm curious to hear from people who did long term Rocephin. I was on it for one year. If the lyme came back how did you treat second time around???? Orals or IV again???
Also if you have the name of a LLMD in the Philadelphia area please p.m. me name and number.
Thanks,
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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posted
I did Rocephin for 4 months, that was 8 yrs ago.
I ended up allergic to it, and had drug allergy testing to confirm it.
I was great for 8 yrs. Now back in treatment for over the last yr.
I'm treating it with Zith and malarone. First started with Biaxin and plaquenel. I'm doing ok really.... and I won't let my body go 8 yrs between treatments again.
I really feel it's not the lyme that came back, I feel it's the bab's that reared it's ugly head this time.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
Thanks hadlyme, appreciate your input. I too think that just going off the antibiotics for a two year period did me in.
I never really treated for bart and always tested negative for it. The problem is I have all the bart symptoms, myoclonus, etc.,
Posts: 281 | From san francisco | Registered: Jun 2006
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posted
Rocephin relapses are very common. I'm wondering where all the "relapsers" are today?
But like you said, maybe it's just that you've been off abx for so long.
I think one problem they used to have is they would give patients Roc and then not follow up with orals or other meds... instant relapse.
Does sound like you need to treat the bart.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Worked twice, the third time, relapsed so bad, never went back on antibiotics. Was in remission for about 8 mos each time. Have bart too. Good look and feel better.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Chiming in!
I was on Rocephin via a regular ID doc who actually stated "I don't believe in coinfections".
Athough the Rochephin did help me a lot with CNS issues, esp headaches, I did relapse and went back on orals, plus found out via an LLMD once I became more educated, that I am CDC+ for Babs WA-1 (duncani). I think that there needs to be a lot of awareness raised on using a combination of ABX (like cyst-buster + macrolide) while on Rocephin. I wish I had known.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
Did 9 1/2 mos IV Rocephin. Got worse when I stopped.
Posts: 847 | From upstateNY | Registered: Dec 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
In Pam Weintraub's book "Cure Unknown" she mentions that she and Dr. B got well doing IV (I'm pretty sure but not positive it was rocephin). They both went into remission, then came off IV and let themselves get really sick and then back on IV 3x's and then no more relapses.
I hope I have all the details right but that is my recollection. It has been discussed here at lymenet several times.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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While on rocephin I was always on other antibiotics as well. I was on flagyl, azith, biaxin, mepron. I also did six full months of bicillin shots at a dose of 4.8 a week.
I definitely hit my lyme hard but am not sure why I'm relapsing. I'm trying to rule all other things out by having my primary do a ton of tests for this sudden nerve pain.
I never ever had nerve pain and that's why I'm hesitant to say it's lyme. Reading up today on lyme more and more it's all over that it causes nerve pain/damage. It's even listed on the National Institute of Healths web site as a symptom.
I am however seeing some of my old symptoms of lyme with shoulder shrugging and stomach myoclonus. That's why I'm thinking, it's creeping back and the nerve pain is just a new symptom.
Thank you all for your responses, it's much appreciated. I spent a lot of time here a few years back. Learned tons on this forum and looks like I"m back in the thick of things right now.
Thanks again,
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Barb, have you had your cd57 measured? That may give you more information as to the potential that this is a relapse. Not the be all/end all. just another piece of data that might be helpful taken with all of your other data.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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quote:Originally posted by TerryK: In Pam Weintraub's book "Cure Unknown" she mentions that she and Dr. B got well doing IV (I'm pretty sure but not positive it was rocephin). They both went into remission, then came off IV and let themselves get really sick and then back on IV 3x's and then no more relapses.
I hope I have all the details right but that is my recollection. It has been discussed here at lymenet several times.
Terry
Terry, that's exactly what they did -- but I'm pretty sure it was the oral ceftin that they used.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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lymeboy
Unregistered
posted
I treated with IV rocephin for 3.5 months with no cyst buster and I did next to nothing.....
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I was on 2GM of Rocephin for 56 days straight. It was really helping me but this doctor had a rigid protocol. 56 days was it. Pulled the line when I was at about 60%.
Completely relapsed within 5 days. $14K down the drain.
The big mistake was not following it with orals.
I now see a better LLMD and am actually close to or at remission with orals.
Posts: 699 | From confusion | Registered: Jan 2011
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
stillwater: what is your oral regimen?
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
I think you can have a relapse after any kind of antibiotic treatment. This is not strictly a flaw of rocephin.
This germ hides and becomes inactive. It can re-emerge quickly or years later after you have stopped treatment and thought you were cured. That is why remission is a better term for what happens when the symptoms disappear after treatment. It can be short or long remission.
And if ceftin cured everyone, like it apparently helped Pam and Dr. B, then I would be cured too.
There is no magic drug that works for everyone.
Posts: 8430 | From Not available | Registered: Oct 2000
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just started IV ROC- first 6 weeks/2nd round into week 3 at 5 grams a shot, yes-5 grams
really new at this Lymestuff, was wondering, always wondering!!
STILL- what type of orals should be done with Roc? we/my husband is also on Plaq- we haven't yet got any co-infection results.... so currently just on Roc, plaq and a slew of supplements/probiotics etc...
What other types of orals can the body tolerate while it's trying to deal with 5grams of Roc to boot???
Thanks Rocepin friends!!!
-------------------- Change is inevitable Posts: 77 | From France | Registered: Jan 2011
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posted
Big dose. You should watch out for gallbladder sludging.
Many people combine a macrolide with rocephin (biaxin, zithromax), plus a cyst buster (but maybe this is why you are taking plaquenil).
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Nerve pain was one of my biggest symptoms with lyme and babs. Lyme attacks the brain and the nervous system, and when inflammation happens in the brain, it can set off a triggered response of body nerve pain that is unbearable.
I describe it like waking up during open chest surgery. It hurt so bad I couldn't talk.
Now, after 2 1/2 yrs, I'm pain free! Antibiotics the entire time, but now I pulse.
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