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» LymeNet Flash » Questions and Discussion » Medical Questions » what causes a relapse off rocephin?

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Author Topic: what causes a relapse off rocephin?
Nicole2011
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I see ppl always say thy relapse when they get off rocephin... Could it be because thats how they end their treatment without taking anythin after?.. in my case im doing Rocephin & following up with rocephin.. Is there a difference?

--------------------
Neuro-Lyme (possible bart)
Symptoms started Jan 2011::Diagnosed Feb 11th,2011::
*Anything is possible thru God who strengthens me*

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Lymetoo
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??
If you're following up with Rocephin, then you're not really OFF Rocephin, right?

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

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Nicole2011
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im getting off may 13th & following up with orals

--------------------
Neuro-Lyme (possible bart)
Symptoms started Jan 2011::Diagnosed Feb 11th,2011::
*Anything is possible thru God who strengthens me*

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Shahbah
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I think it's msotly because Rocephin has very high anti inflammatory properties, so when they stop it, inflammation comes back which feels like a relapse...
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Lymetoo
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Which med??

I think people have relapses because they do not take a cyst buster with the Rocephin... or even after having taken the Roc.

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

Posts: 95821 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
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onbam .. but Rocephin is notorious for its relapses.

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

Posts: 95821 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
map1131
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Rocephin isn't a lyme disease cure. Well, let me say it this way. My insurance paid for 6 weeks of this abx. I think back and I feel bad because it was waste of money for insurance company.

Don't get me wrong I've paid more out of pocket for this illness the last 12 yrs than primary health insurance and Medicare put together.

So believe me I'm not high maintence($$$)for them. But even after 6 wks of IV, they could offered to pay me to take that and I would of refused.

It wasn't my cure and it didn't take long for me to realize it was waste for me. Some takes it for months and some are even "cured" from it.

To anyone cured, I'm elated for you. If I had it 3 yrs before all the orals I did, who knows? But I doubt it.

I did cyst busters after IV and again it wasn't the answer. I don't like to talk negative about lyme potential treatments. That's all we have and some get better with tx.

Just like cancer and chemo or radiation...some people are "cured", some families find it was wasted money and time and maybe more harmful. Some go into remission and live much longer.

So Nicole, this is the problem with IV Rocephin.

Pam

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"Never, never, never, never, never give up" Winston Churchill

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lululymemom
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I believe if you read the Progress Success stories in the General forum, you will see that there have been several that had success with Rocephin. Since you started treating early you have a better chance of remission. Just be diligent with immune support and after care with orals.

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

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seibertneurolyme
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Nicole, another frequent reason for relapse after IV Rocephin is untreated or undertreated bartonella or BLO. Rocepin is bacteriostatic for bartonella but is not bactericidal for that coinfection.

Bea Seibert

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Lymetoo
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quote:
Originally posted by Carol in PA:

p.s. Another thing....someone tell her about probiotics.

-
Surely she knows by now.

Excellent probiotics:

VSL#3
http://www.vsl3.com/order.asp

Theralac
www.theralac.com

Whatever you take, take at least 100 CFU's per day. Wish someone had told me that 10 yrs ago!

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

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Nicole2011
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Yes i know about actigall & i take probiotics, im going to add a cyst buster the last week of the iv rocephin treatment, this monday

--------------------
Neuro-Lyme (possible bart)
Symptoms started Jan 2011::Diagnosed Feb 11th,2011::
*Anything is possible thru God who strengthens me*

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lymetwister
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Rocephin doesn't kill off too much Lyme in my personal opinion. It pushes Lyme into Cyst form, where it isn't causing problems.

As long as you keep the Rocephin going, Cyst form is where it stays. This is why good LLMD's hit it with a Cyst Buster after a while, then you get major Herx's.

It's all about mutation if you ask me. If you don't treat it in the right order, you don't kill it, instead it becomes a game of "hide and seek". When you pull out Rocephin, the Lyme comes out of Cyst form and it picks up where it left off.

I have seen this brought up time and time again. My problem was that Cyst busting drugs like Flagyl would throw me for Brain Herx's that I could not tolerate, otherwise, I think I would have killed this off by now.

It's all about the order and sequencing of drugs if you ask me.

Just my thoughts...

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Lymetoo
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Which med are you taking after going off Rocephin, Nicole? You said oral Rocephin, but it doesn't come in oral form.

Ceftin?

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

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desertlily
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lymetwister - thanks so much for posting - I relate so much to what you're saying! I've been on Rocephin for forever, but every time I try to go on Flagyl or Tindamax or even grapefruit seed extract, I have terrible neuro herxes, and I take small doses of the meds.

It's so frustrating, because I know I won't be able to progress just staying on the Rocephin, that's not the answer. I herx terrible on Zith as well. The only one that I've been able to tolerate very well, for some reason is doxy.

Well, the plan is to address the Bart, now, maybe after that, I'll do better with the cyst busters?? Here's hoping and praying! [Smile]

--------------------
Susan

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