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» LymeNet Flash » Questions and Discussion » Medical Questions » Where to go after IV Rocephin with peripheral

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Author Topic: Where to go after IV Rocephin with peripheral
joahsark
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I've been on IV Rocephin for quite awhile along with oral zith. Recently taken a severe turn for the worse (pretty suddenly, after having quite awhile of baseline "functionality"} with horrible neuro symptoms (horrible encephalopathy, severe neck pain, no balance, twitching) as well as body wide pain. It has obviously run it's course.

My doc has prescribed a switch to IV zith beginning next week but just now reading that without a central line, that is not recommended due to it's caustic nature.

I have a peripheral line placed weekly. Any suggestions as to what IV drug I can move on to? Or will I need to hit Bart with orals for awhile and possibly go back to the Rocephin later?

Completely back to housebound, almost bedbound and desperate after four solid weeks of barely hanging on.

Thank you for any ideas or input.

Posts: 219 | From pacific nw | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
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Hubby did IV Zithromax with a PICC line and had no problems. I would check with a pharmacist - maybe you could mix the solution weaker and still use that med? 250 cc instead of 100 cc for example.

Bea Seibert

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GretaM
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When you mean peripheral, you mean in your arms somewhere, right? Like the same vein they put anestethic in etc?

It is my understanding that some abx need to go into a larger vein via a PICC or portacath.

I've only had peripheral also.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
joahsark
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Yes, peripheral like you have placed in the hospital. I have one place every week alternating locations in either forearm. I tried to have a picc placed once and it was unsuccessful and now no longer have access to an MD to order another to try again. My doc is an LLND.

I just spoke with the pharmacist at Infuserve and he assured me that they send it with enough dilution of saline that it shouldn't be a problem. No other choice but to trust him.

Posts: 219 | From pacific nw | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
still winning
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Bicillin-LA is a great substitute. You do have to make sure it does not go into a vein. Should do at least 3.6 million units a week. Better to do 4.8 million units. These are shots.

(The shots come either as 1.2 million units or as 2.4 million units. The 2.4 million units are huge. Better to get the 1.2 million unit shots and do 3-4 a week

I am curious how long you have been on Rocephin and whether it was switched to the generic (cephtriaxone).

On Rocephin I did great. Then insurance company switched me to cephtriaxone. Started off great then at some point started getting shipments which made me feel worse. Same thing happened with my Bicillin-LA shots. Felt as if the Lyme vaccine was being mixed with my shots (The shots were from specialty pharmacies destined only for me). My career, advocacy for Lyme, since 1995, and other factors, make me a nice target.

A good oral combination is omniceff and Tindamax (watch for those headaches).

Still Winning

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joahsark
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Hi Still Willing, I've done the Bicillin thing, no noticeable results. I've always had the Ceftriaxone, did it for over a year building up the dose slowly. Had some pretty good time.

My doc just two days ago came back from a lyme conference and learned that emerging evidence is showing Bart is not responding well at all long term to any IV med, and that it must be addressed first before Lyme can be dealt with.

So I'm off IV for a bit and starting an aggressive Bart oral protocol. Starting Biaxin today. Thank you for your reply! Hope you are doing well.

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S13
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Are you only doing biaxin for bart?
You need at least 2 intracellular antibiotics for bart. Some even need 3.
Combine your biaxin with high dose rifampin and you have a great bart combo. See this thread also:
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/129710?

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joahsark
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Yep, I will definitely be on a cocktail of three or four. My brain herxes are so severe that I have to start out slowly with one and add on as I recover each time. Thank you for the link!!
Posts: 219 | From pacific nw | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
still winning
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joahsark,

Hope it works and you start feeling better. We’ve all been there.
What a drag (I’m being whatever to masquerade the you know what that we’ve all been through and continue to go through).

So first thing is, hope you feel better and keep us posted.

But I am wondering about something you mentioned since I have been through this phenomenon (sp?) both with cephtriaxone and Bicillin-LA. I have done wonderful and then abruptly get batches which make me feel worse.

When that happened with cephtriaxone, I had some vials left over from a shipment I knew was good. The vials were the same shape but the labels changed slightly. So I did my own double blind study. I carefully took the labels off some of the good and bad batches. I put the labels from the good and bad batches and put them in respective boxes with the good and bad cephtriaxone.

I mixed the boxes around so I did not know from which box I was getting the cephtriaxone. Then I injected. I put the vial back in the box from where it came so I would later be able to tell from which box I was injecting, the good or bad cephtriaxone. I knew immediately from which box I had taken the vial, without having to check the box. Of course I did check the box and I was right.

OK, what I am getting at has probably been lost. What I am trying to say is that there was a difference-a stark difference between the good and bad batches which I proved with my double blind study.

But it’s not just that the bad batches were ineffective, they actually made me feel worse, as if the Lyme was being accentuated. Sort of like what I believe you were experiencing, I think.

I think something was going on. I had to stop what formerly were extremely effective antibiotics, because they abruptly made me feel worse, as if they were giving me Lyme symptoms.

I don’t think antibiotics just stop working or make us feel worse.
I am interested in your thoughts but understand if you don’t have the energy, or for whatever reason don’t feel like delving into this topic now.

As I said, my main concern is for you to feel and get better.

Still Winning

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LymeMom Kellye
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Hi my friend. I just want to offer support and encouragement. You can do this. IV Zith was tough for nausea. We did it at bedtime, or after sleep. I would set my alarm for the middle of the night and infuse. Otherwise it was too much to tolerate. It did wonders though.

Hang in there. Know that I am here for you. Prayers!

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LymeMom Kellye
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Hi my friend. I just want to offer support and encouragement. You can do this. IV Zith was tough for nausea. We did it at bedtime, or after sleep. I would set my alarm for the middle of the night and infuse. Otherwise it was too much to tolerate. It did wonders though.

Hang in there. Know that I am here for you. Prayers!

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joahsark
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Hi Kellye! So good to hear from you. Doc just came back from a conference and pulled me off all IV, says she learned that Bart isn't responding well long term to any IV drug and that if it's not dealt with first you can't hit Lyme well. I guess that's why I took such a horrible turn for the worse all of a sudden in August.

Starting back on aggressive Bart oral combo, right now Biaxin 2x day, OMG, I feel like death itself, completely non-functional, exactly like I did in the beginning with Dr. M. Ridiculous.

Hoping this finds you guys doing well!! Talk to you soon.

Posts: 219 | From pacific nw | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
Razzle
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I'm wondering if the reason IV only fails for Bart. is because the bug has an affinity for the GI tract (& mucus membranes)? I don't think IV versions of the abx are all that effective in the gut vs. orals (this is just my opinion, I am not a doctor).

Just speculating...

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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joahsark
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I was so hopeful the IV would do some serious butt kicking in my brain, and it did give me "functional" time, but that has all ended.

Body wide pain is bad, not being able to walk is bad but brain swelling, head pain, seizure, dizziness and everything nuero are horrific. Thankfully not too much GI, although my 13 year old who contracted congenitally has GI very severe.

Pushing on with the orals.

Thank you everyone for your insight and suggestions.

Much Peace to you all.

Posts: 219 | From pacific nw | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
   

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