Rifampin, Azithromycin, Plaquenil Experiences

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Babyfacedrey
New Member


Date Joined Nov 2016
Total Posts : 17
   Posted 3/16/2018 10:41 PM (GMT -6)   
I have just been prescribed a Rifampin, Azithromycin, Plaquenil Regimen for Lyme and Bartonella.
This combination reads like it could have potentially serious to fatal side effects.
Anyone on this regimen? How did you feel?
Any tips?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 3/17/2018 12:52 AM (GMT -6)   
Are you referring to the risk of long qt syndrome that comes with both Azithromycin and Plaquenil?

I’m not sure I’d want to take two meds with that risk at the same time.
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

Babyfacedrey
New Member


Date Joined Nov 2016
Total Posts : 17
   Posted 3/17/2018 1:02 AM (GMT -6)   
Yes that's exactly the risk that concerns me. My heart will be closely monitored but the risk of cardiac death is worrisome to me.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 3/17/2018 2:08 AM (GMT -6)   
Babyfacedrey said...
Yes that's exactly the risk that concerns me. My heart will be closely monitored but the risk of cardiac death is worrisome to me.


Why not drop Azithromycin and replace with something else?
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

RedLabel
Regular Member


Date Joined Feb 2017
Total Posts : 216
   Posted 3/17/2018 8:59 AM (GMT -6)   
I'm taking both and have been for about 3 months. No issues yet
Lyme, CPN, Yersinia, Coxsackie, CMV and Bartonella after LLMD visit.
CD57 0, 2, 0, 3

Started treatment in May 2017
Currently on Azithromycin, Doxycycline, Plaquenil, Rifampicin, Delimmun

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 175
   Posted 3/17/2018 9:12 AM (GMT -6)   
I've done azithromycin and plaquenil without issue.

Babyfacedrey
New Member


Date Joined Nov 2016
Total Posts : 17
   Posted 3/17/2018 10:02 AM (GMT -6)   
Thank you RedLabel and acarined that is very hopeful to hear!! My pharmacist says my risk is low it's just scary to start something that has chemotherapeutic symptoms and such scary listed side effects. Happy to hear that this combo can be well tolerated.
Girlie unfortunately I go into Anyphylaxis from the other major antibiotic class that could be used. :/

RedLabel
Regular Member


Date Joined Feb 2017
Total Posts : 216
   Posted 3/17/2018 10:54 AM (GMT -6)   
It's also a combo that Horowitz use according to his book
Lyme, CPN, Yersinia, Coxsackie, CMV and Bartonella after LLMD visit.
CD57 0, 2, 0, 3

Started treatment in May 2017
Currently on Azithromycin, Doxycycline, Plaquenil, Rifampicin, Delimmun

Babyfacedrey
New Member


Date Joined Nov 2016
Total Posts : 17
   Posted 3/17/2018 10:56 AM (GMT -6)   
Yes I read extensively on it and the results are very promising. I just couldn't find anything on what people experienced symptom wise and if they had any heart irregularities. This Infectious Disease journey is one heck of a crazy one.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 3/17/2018 11:18 AM (GMT -6)   
Babyfacedrey said...
Thank you RedLabel and acarined that is very hopeful to hear!! My pharmacist says my risk is low it's just scary to start something that has chemotherapeutic symptoms and such scary listed side effects. Happy to hear that this combo can be well tolerated.
Girlie unfortunately I go into Anyphylaxis from the other major antibiotic class that could be used. :/


Oh I see - we’ll you definitely don’t want that to happen

That includes minocycline, doxy, Ceftin?
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

Babyfacedrey
New Member


Date Joined Nov 2016
Total Posts : 17
   Posted 3/17/2018 11:22 AM (GMT -6)   
Hi Girlie, was on Doxy and made moderate gains. It took me far but I plateaud. Specialist believes that this combo is the next phase to get me to the next level of meaningful recovery.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 3/17/2018 11:57 AM (GMT -6)   
Babyfacedrey said...
Hi Girlie, was on Doxy and made moderate gains. It took me far but I plateaud. Specialist believes that this combo is the next phase to get me to the next level of meaningful recovery.


But did you try doxy with Rifampin or rifabutin and Azithromycin?




Only you can decide if the possible benefits outweigh the risks.

Eg. the fluoroquinolones are likely to be the best treatment for Bart but I’m not willing to take the risk of the side effects - maybe once I’ve exhausted the others’ with less serious effects I will.



It may be that the long qt syndrome risk is very minimal even with both those drugs combined.

My concern is that when I read about it - it can be there without symptoms so you may not realize it’s affecting you.

How often will you be having an EKG? Or is there another test as well?
Good to hear your Dr will be monitoring you while on it.
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

Babyfacedrey
New Member


Date Joined Nov 2016
Total Posts : 17
   Posted 3/17/2018 1:57 PM (GMT -6)   
They will be doing an EKG one month in when it reaches therapeutic levels. It is a rare side effect but a scary one. Fluroquinolones left me in ICU so I think I just have to bite the bullet. It is scary to think Long QT is symptomless. At least I'm being monitored. I'm curious how many others have been on this combo without issue. smile

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 3/17/2018 2:06 PM (GMT -6)   
Babyfacedrey said...
It is scary to think Long QT is symptomless. . smile


CAN be symptomless - not is - could be that it’s rare to happen without symptoms.
It was a few years ago when I read about it.

/www.mayoclinic.org/diseases-conditions/long-qt-syndrome/symptoms-causes/syc-20352518
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

insomniaaa
Regular Member


Date Joined Apr 2017
Total Posts : 149
   Posted 3/17/2018 4:05 PM (GMT -6)   
You need to do long term ECG's to actually see the arrhythmias.

You can try taking one azithromycin tablet and see how your heart handles it.
If you experience multiple arrhythmias you should probably stop taking it.

Perhaps bactrim could be an alternative.

Post Edited (insomniaaa) : 3/17/2018 4:08:19 PM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 3/17/2018 4:15 PM (GMT -6)   
Babyfacedrey said...
They will be doing an EKG one month in when it reaches therapeutic levels. It is a rare side effect but a scary one. Fluroquinolones left me in ICU so I think I just have to bite the bullet. It is scary to think Long QT is symptomless. At least I'm being monitored. I'm curious how many others have been on this combo without issue. smile



The rifampin is instead of the fluoroquinolones

You could just change the Azithromycin so that you're just on one med that causes long qt (Plaquenil)

Mino is good with riffy...maybe ok with the Plaquenil
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

Inspiredby3
Regular Member


Date Joined Jul 2013
Total Posts : 359
   Posted 3/17/2018 5:51 PM (GMT -6)   
I didn’t have any side effects at all. The only thing was that Rifampin metabolized my pain meds, so was constantly in pain and had to stop Rifampin due to that. Otherwise no problem with the others.
Found tick and oval rash March 2012
Got sick 2.5 months later.
Tested negative for Lyme and coinfections. Treatment started Dec. 2012. In 2014 tested positive for Bartonella. Clinically diagnosed with a Babesia in 2015. Taking - Minocycline, clindamycin and Plaquenil. Buhner and Cowden herbs. MTHFR mutation

Babyfacedrey
New Member


Date Joined Nov 2016
Total Posts : 17
   Posted 3/17/2018 8:26 PM (GMT -6)   
Thank you so much everyone for kindly giving me your thoughts. So comforting to see so many have taken this combo with no issues. smile

insomniaaa
Regular Member


Date Joined Apr 2017
Total Posts : 149
   Posted 3/18/2018 4:31 PM (GMT -6)   
Girlie said...

You could just change the Azithromycin so that you're just on one med that causes long qt (Plaquenil)


I totally agree with Girlie on this one.

You should probably not mix Azithromycin with Plaquenil as they both mess with the heart.
It could be too much for your heart to handle. Try either one but not both simultaneously.

And don't forget to supplement potassium and sodium when taking these cardiotoxic drugs.

Post Edited (insomniaaa) : 3/18/2018 4:36:53 PM (GMT-6)


Babyfacedrey
New Member


Date Joined Nov 2016
Total Posts : 17
   Posted 3/22/2018 10:04 PM (GMT -6)   
An update... turns out I'm very allergic to Azythromycin. Within ten minutes of taking it I was having difficulty breathing and severe wheezing. I was able to stop anaphylaxis fortunately.

Now it's Plaquenil and Rifampin which I seem to handle really well. Awaiting to see what the doctor wants to replace Azythro with. I guess the positive is no longer having to worry about that interaction.

Thanks everyone for your input.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 3/22/2018 11:56 PM (GMT -6)   
maybe minocycline?
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
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