Risk vs. Reward Cipro

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 1/24/2018 5:45 PM (GMT -6)   
My LLMD prescribed Minocyline plus Cipro. I didn't realize that is one of those black box meds. I just looked up some threads and saw people recommending nobody touch these with a 10 ft pole...

I am trying to figure out if the risk is worth the reward.

I have done well with other meds. I feel like I am about 80-90% recovered.

Does anybody know what the odds of getting floxed are? Like 1 in 10, 1 in 100, or like 1 in 10,000?

Thanks all!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33967
   Posted 1/24/2018 5:50 PM (GMT -6)   
Have you done Rifabutin? You could always try that first for the Bart infection.


Cipro isn't one I'm willing to take with the risks.
We do have a forum member who was floxed.

And you're 80-90% recovered...I would definitely try Rifabutin instead first.


I don't know what the odds are....but if you look up floxing or floxie ...there's a website dedicated to stories of people who were floxed.

If you've made up your mind to take them...you may not want to visit the site.

The problem is - the symptoms of floxing are also symptoms of bart/lyme infections.
So, if your neuropathy worsened - how would you know if it was from the infection...or from the medication/floxing.
And, the other one is tendon rupture....could also be confused with worsening of muscle pain.

Having said all that - the fluoroquinolones are very effective against bart.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 1/24/2018 6:01 PM (GMT -6)   
Thx Girlie you da best!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33967
   Posted 1/24/2018 6:08 PM (GMT -6)   
Missouri said...
Thx Girlie you da best!


You're welcome.

I'm most likely going to be prescribed that when I see the NP at Dr. J's clinic.

...and I'm going to have to decline it...but it's the one bart treatment that can be taken concurrently with Mepron (I think?)
Rifampin/Rifabutin isn't.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 1/24/2018 7:09 PM (GMT -6)   
I read a few articles on it. I am not going to take the risk. It is not worth it at this point. I could always take it later if I am desperate or crash or whatever.

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2925
   Posted 1/24/2018 8:26 PM (GMT -6)   
Not as well known but Alinia hits Bartonella pretty hard as well most people just think its for parasites.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33967
   Posted 1/24/2018 8:32 PM (GMT -6)   
Rikky1 said...
Not as well known but Alinia hits Bartonella pretty hard as well most people just think its for parasites.


Is Alinia hard on the liver?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1664
   Posted 1/25/2018 7:25 AM (GMT -6)   
As always Girlie makes some good points. I got floxed with Levaquin after only 19 days. It took almost year for my Achilles tendon to heal. But 7 months later I added Cipro to my combo ABX protocol for another 10 months with no issues and some improvements. Everything we take has some risks. I would take rat poison if it would help end this disease.

I've been struggling with the last 20% of healing for the past four years after starting treatment way back in March 2010. My current combo of Tetra, Alinia, Diflucan pulsed 2 weeks on and 3 weeks off, and Hout with JP plus daily has got me to 90 to 95%. Maybe this is as good as it gets for an old fart.
I'll need to cut Alinia soon due to cost, and then see what I need for lifetime maintenance.

When my liver goes, so be it... Everything has an expiration date.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 1/25/2018 9:30 AM (GMT -6)   
Thanks for the input tb666! Yeah I definitely understand why people do take quinolones even with the risks.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33967
   Posted 1/25/2018 1:52 PM (GMT -6)   
I also get why people will take those meds with the risks.

It's a hellish life living with these symptoms.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4917
   Posted 1/26/2018 7:14 PM (GMT -6)   
Could happen any time any reason. ..it has flouride molecule that alters dna ...i counldnt risk the tendonitis more ...i was gunna seek out gentymcin if riffyzith didnt do it but hh2 and allicin and bvt was just as strong . Some get quik with low dose im gent while monitoring kidneys ....rocephin and rife seemed to hit my bacciliformis

Alinia may hit some too ...i have been pulsing it now for over a year ...girlie if anything its a little hard on kidneys and i dont drink enough water ...pee glows iridescent yellow right away ...not sure halflife ?

Post Edited (bluelyme) : 1/26/2018 8:01:03 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33967
   Posted 1/26/2018 7:34 PM (GMT -6)   
Thanks. blue.

I will most likely be prescribed Alinia - I know Dr. J. does have it in his protocols.

Well, i've got burnt orange pee now...


One more week...and I'm off on my adventure - hope the plane doesn't crash.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

JustPiccd
Regular Member


Date Joined Dec 2017
Total Posts : 84
   Posted 1/27/2018 8:49 AM (GMT -6)   
I managed to stay on Cipro for about 7 weeks and it was the very first thing to really hit my bart when it was most severe. It really helped me turn a corner and did far more in those 7 weeks than Rifampin has done now in years. But a few weeks in, my tendons did begin to hurt and the pain grew EXCRUCIATING to the point I really couldn't put any weight on my legs and I'm pretty sure I came stupidly close to rupturing my tendons.

What helped me reverse this, however, were a) daily magnesium shots to really get magnesium into the tissue and b) high doses of alpha lipoic acid. These did effectively reverse the symptoms. If you do choose to go on the Cipro despite the risks, you might try doing these measures too at least a couple of hrs apart from the meds so you're still getting the full dose (though check with doctor to make sure you're not inadvertently just reducing your dose with this, since I did both after stopping, actually). I can say though this really did seem extremely protective of/healing of my tendons when I had such a bad reaction.

There's really no question now those drugs are dangerous. So you really do have to think sincerely about risk versus reward and frankly, if you have an LLMD who didn't mention the black box warning, that would give me pause about your doctor too, as you should be able to openly discuss all of this and make a clear choice.
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, August 21, 2018 9:26 PM (GMT -6)
There are a total of 2,995,334 posts in 328,257 threads.
View Active Threads


Who's Online
This forum has 161325 registered members. Please welcome our newest member, OP_princess.
271 Guest(s), 14 Registered Member(s) are currently online.  Details
borrelioburgdorferii, Nick_69, trekkar, Honeybus, oceanfisher58, cashlessclay, Hoagie, hogo2000, Hummingbird22, Pratoman, Chutz, T.S. Eliot, fjdrill, borborygmi