Bartonella Treatment - Feeling Terrible

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NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 622
   Posted 3/17/2018 3:20 PM (GMT -6)   
Hey everyone!

I started bartonella treatment two nights ago with Rifampin 300mg once a day (doing this for a week then increasing to twice a day) and Zithromax.

I have only taken this Thursday night and Friday night but today I feel horrible..

My shoulder blade pain is bad in my left shoulder blade, my head is killing me (ice pick headache), I feel very weak and lots of dizziness and brain fog. I also feel really down..

Last night I woke up in the middle of the night with a drenching night sweat which concerned me because this usually is connected to babesia, but could this be bart too?

Does this sound pretty typical for a bartonella herx? How long does it last usually? I am so sick of feeling sick and I just really want this to work for me and resolve my symptoms. I can't even enjoy life..

dbwilco
Regular Member


Date Joined Mar 2016
Total Posts : 263
   Posted 3/17/2018 3:38 PM (GMT -6)   
my llmd feels that alot of sweating can be bart....in fact he feels most of lingering symptoms are bart

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 3/17/2018 3:58 PM (GMT -6)   
When I started rifampin I bought empty capsules and filled them with half of a 300 mg riffy.
I had heard warnings of riffy being a tough med.

I think I did that for 5 days...maybe a week.

Then I did 300 mg for a couple (maybe even three/four) weeks per my LLND.

Then 300 twice daily.


Maybe taking 150 per day for a week or two might be an option.

Were you already taking zith for awhile before adding in riffy?
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

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2501
   Posted 3/17/2018 4:01 PM (GMT -6)   
I have occasional night sweats. They started in college so has to be bart or myco. Over the years would go through spurts of having them. Now, when I start certain abx I get them for about a week (mino, doxy, azith).

I had no sweats with rifampin, bactrim, ceftin, omnicef or malarone.

NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 622
   Posted 3/17/2018 4:27 PM (GMT -6)   
Yeah I’ve been taking Zithromax for awhile now because I wasn’t combining it with the mepron for babesia. Now I’m also having burning and numbness in my stomach on the left side.. so weird.. sad
Very sick starting around 07/2016
Started treatment 03/2017
Bixain & Cefdinir - 3 months - plateaued
Then Biaxin & Minocycline - 3 months - did not improve
Tinidazole - 500MG 2x a day - 2 weeks
Now taking:
Mepron 5mL 2x a day
Zithromax
Nystatin
Cats Claw - 30 drops 2x a day
Gou Teng - 30 drops 2x a day
CSA - 40 drops 2x a day
Japanese Knotweed - 40 drops 2x a day

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 138
   Posted 3/17/2018 5:15 PM (GMT -6)   
NicHostetler said...
Yeah I’ve been taking Zithromax for awhile now because I wasn’t combining it with the mepron for babesia. Now I’m also having burning and numbness in my stomach on the left side.. so weird.. sad


Hey Nic, sorry to hear you are feeling so terrible. When did you stop your last round of Mepron/Babs treatment? It took me almost 3 weeks after stopping Mepron to feel better. Were you unable to switch to another Bab med to get the recommended 4 months of treatment in? I started taking NAC as a supplement and that has really helped.

NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 622
   Posted 3/17/2018 7:09 PM (GMT -6)   
I stopped it Thursday morning. So you think I could still be feeling side effects from the mepron? I thought the Rifampin lowers the effectiveness of that so I figured it kind of cleared by now.

I am going to take artemisinin and CSA to help keep treating babesia while treating bartonella.



Does anyone know what this burning sensation could be? Its terrible.. Its on my stomach.. kind of feels like a sunburn with numbness.
Very sick starting around 07/2016
Started treatment 03/2017
Bixain & Cefdinir - 3 months - plateaued
Then Biaxin & Minocycline - 3 months - did not improve
Tinidazole - 500MG 2x a day - 2 weeks
Now taking:
Mepron 5mL 2x a day
Zithromax
Nystatin
Cats Claw - 30 drops 2x a day
Gou Teng - 30 drops 2x a day
CSA - 40 drops 2x a day
Japanese Knotweed - 40 drops 2x a day

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 3/17/2018 7:25 PM (GMT -6)   
NicHostetler said...
I stopped it Thursday morning. So you think I could still be feeling side effects from the mepron? I thought the Rifampin lowers the effectiveness of that so I figured it kind of cleared by now.

I am going to take artemisinin and CSA to help keep treating babesia while treating bartonella.



Does anyone know what this burning sensation could be? Its terrible.. Its on my stomach.. kind of feels like a sunburn with numbness.



Mepron half life - 2-3 days , so stays in your system for a long time especially if you took it daily, how long were you 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

NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 622
   Posted 3/17/2018 7:42 PM (GMT -6)   
I was on it from November to the middle of February and then from the middle of February to the middle of march.

Hopefully then after the mepron is out of my system I start feeling better.
Very sick starting around 07/2016
Started treatment 03/2017
Bixain & Cefdinir - 3 months - plateaued
Then Biaxin & Minocycline - 3 months - did not improve
Tinidazole - 500MG 2x a day - 2 weeks
Now taking:
Mepron 5mL 2x a day
Zithromax
Nystatin
Cats Claw - 30 drops 2x a day
Gou Teng - 30 drops 2x a day
CSA - 40 drops 2x a day
Japanese Knotweed - 40 drops 2x a day

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 3/17/2018 7:56 PM (GMT -6)   
NicHostetler said...
I was on it from November to the middle of February and then from the middle of February to the middle of march.

Hopefully then after the mepron is out of my system I start feeling better.


I haven't done the math, but I would think it could be in your system for several weeks...but the good news?
It's gradually lessening everyday...


Hang in there...
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

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 138
   Posted 3/18/2018 2:28 PM (GMT -6)   
NicHostetler said...
I stopped it Thursday morning. So you think I could still be feeling side effects from the mepron? I thought the Rifampin lowers the effectiveness of that so I figured it kind of cleared by now.

I am going to take artemisinin and CSA to help keep treating babesia while treating bartonella.



Does anyone know what this burning sensation could be? Its terrible.. Its on my stomach.. kind of feels like a sunburn with numbness.



Definitely could be the Mepron. With a half life of 2-3 days, 4 half lives could mean anywhere from 8-12 days before it’s out of your system, and then you may need even longer after that for the toxins it creates to clear. I have no experience with the stomach symptoms you mention, do you have acid issues? Does Alka seltzer or tums help?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 3/18/2018 3:13 PM (GMT -6)   
Solaris719 said...
NicHostetler said...
I stopped it Thursday morning. So you think I could still be feeling side effects from the mepron? I thought the Rifampin lowers the effectiveness of that so I figured it kind of cleared by now.

I am going to take artemisinin and CSA to help keep treating babesia while treating bartonella.



Does anyone know what this burning sensation could be? Its terrible.. Its on my stomach.. kind of feels like a sunburn with numbness.



Definitely could be the Mepron. With a half life of 2-3 days, 4 half lives could mean anywhere from 8-12 days before it’s out of your system, and then you may need even longer after that for the toxins it creates to clear. I have no experience with the stomach symptoms you mention, do you have acid issues? Does Alka seltzer or tums help?


I think it would be more than 8-12 days...since the amount is building while on it?

I'd have to do it on paper...
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

NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 622
   Posted 3/18/2018 3:51 PM (GMT -6)   
Solaris719 said...
NicHostetler said...
I stopped it Thursday morning. So you think I could still be feeling side effects from the mepron? I thought the Rifampin lowers the effectiveness of that so I figured it kind of cleared by now.

I am going to take artemisinin and CSA to help keep treating babesia while treating bartonella.



Does anyone know what this burning sensation could be? Its terrible.. Its on my stomach.. kind of feels like a sunburn with numbness.



Definitely could be the Mepron. With a half life of 2-3 days, 4 half lives could mean anywhere from 8-12 days before it’s out of your system, and then you may need even longer after that for the toxins it creates to clear. I have no experience with the stomach symptoms you mention, do you have acid issues? Does Alka seltzer or tums help?


I do have acid issues but alka seltzer doesn't help this numbness.

So is this likely side effects from the mepron? Or a babesia herx from die off? If it's a babesia herx maybe I shouldn't be switching to Bartonella quite yet?

It's just strange because it didn't start up until after I took Rifampin Thursday night.


Girlie and Solaris - Is there a formula I could use to calculate how long it will be in my system? I am not exactly sure how half lives work with meds.

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 138
   Posted 3/18/2018 4:29 PM (GMT -6)   
It takes about 4-5 half lives before the drug is considered clinically eliminated from your system. I am not sure if the cumulative effect of building the drug up in your system factors into it, BUT, at a bare minimum you are looking at the very last dose of Mepron being in your system for a while. RxList has Mepron half life at 62 hours plus or minus 30 hours (meaning for some folks the half life is closer to 90 hours, or as little as 32 hours). Take 62 hours, multiply that by 5 (for 5 half lives to eliminate) and you get 310 hours, then divided by 24 hours, you get 12.9 days on average. That’s just the Mepron, the eliminate the toxins created and detox can be days or weeks beyond that. It took me at least 3 weeks to recover from the 1 month on Mepron, and I tell everyone that those were the worst 3 weeks of my life. I won’t be touching Mepron again unless my life depends on it (finishing week 3 of Coartem now, much more tolerable at this point, will prob go to malarone after that).

As far as the Bart treatment, I suppose it’s up to you if you can handle recovering from babs rx and starting Bart rx. Listen to your body, consult with your LLMD if necessary, and go from there. Detox as best as you can.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 3/18/2018 4:34 PM (GMT -6)   
I don’t know if theres a formula - I would think there is -

I just did it once on paper

Sunday 750 + 750 is 1500
Monday 1500 + 1500 (sundays) is 3000
Tuesday 1500 + 1500 (Monday’s) + 750 (half of Sunday’s) is 3750
Wed 1500 + 1500 (Tuesday’s ) + 750 (Monday’s) plus 750 (half of Sunday’s) is 4500


There’s gotta be an easier way!! I may not have this right!
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

NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 622
   Posted 3/18/2018 5:40 PM (GMT -6)   
So do both of you think I should probably stop Rifampin for a few days at least and focus on detoxing my liver and then start it back up when some of the mepron has cleared?

Just not really sure what to do at this point...
Very sick starting around 07/2016
Started treatment 03/2017
Bixain & Cefdinir - 3 months - plateaued
Then Biaxin & Minocycline - 3 months - did not improve
Tinidazole - 500MG 2x a day - 2 weeks
Now taking:
Mepron 5mL 2x a day
Zithromax
Nystatin
Cats Claw - 30 drops 2x a day
Gou Teng - 30 drops 2x a day
CSA - 40 drops 2x a day
Japanese Knotweed - 40 drops 2x a day

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 138
   Posted 3/18/2018 7:21 PM (GMT -6)   
NicHostetler said...
So do both of you think I should probably stop Rifampin for a few days at least and focus on detoxing my liver and then start it back up when some of the mepron has cleared?

Just not really sure what to do at this point...



I would talk to your LLMD. It all depends on how you feel, if your body is completely overwhelmed and you can’t function I would definitely take a few days off. If you feel like it’s tolerable you can try and keep going. Or you could find a happy medium and maybe pulse your rifampin or take a lower dose to ease into it.

For me, I had to stop because I was basically non functional, my CNS needed to be detoxed in addition to my liver (enzymes were elevated). My brain felt like it was on fire and I think I would have ended up in the hospital if I took any more Mepron or ABX. Adding NAC and circumin to my existing regimen helped a lot.
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