Bartonella pulsing protocol

Well, Dr. J pulses all his protocols...BUT he won't just prescribe 2 at a time...there's always three +

Sometimes it's two weeks on, one week off. Or two weeks on, two off.

Except when you do the full Babesia or the Persister/Bart protocol (which I'm on) - then it's 5 days in a row first week, then a couple days off...and then week 2 is 3 days on...followed by two weeks off.

I took Rifampin plus minocycline for well over a year with my previous Lyme Doc. I plateaued.
I'm now on Rifabutin...and I have had distinct herxes....didn't realize they were herxes because they were so bad...but each cycle...they're getting less strong. I never herxed like that on Rifampin.

Maybe discuss switching to Rifabutin.

summer16 said...
Thanks, Girlie. Did you take the Rifampin once a day or twice a day? Could you explain your “bad” herxes so I can compare.

One of my symptoms is shortness of breath while moving about. There are days that it is barely noticeable. Doc feels it is related to Bartonella. I have not been treated for the Babesia strain. Wouldn’t my RBC bloodwork be out of whack?

At first I took 300 mg twice daily - but after a year or so (can't remember exactly), I did try the 600 mg once daily dosing.

My symptoms have always flared on their own...regardless of whether I'm 'on' or 'off' the antibiotics.
Sure, sometimes while on, it would be increased...but no significant patterns.


So, the bad herxes on the persister/bart protocol happened on Cycle 2 , and 5 and then on a cycle without the Dapsone/dararprim.

The worst one was Cycle 2, lesser on 5 and even lesser on the cycle without the D and D.

I'll describe the first one (Cycle 2)
I had taken the Dapsone/Darprim for 5 days and Rifabutin/Ceftin/Mino on the M/W/F.

Going on memory now.....Friday night - I think around 10:00 p,m. I was watching tv and my arms started to shake/jerk (not internal tremors...but actually jerking). If I concentrated on it, I could stop it temporarily...but then it would just start again. My heart was racing (can't remember but over 100 bpm), and I had a high fever. I've not ONCE in the past 4 + years had a fever during treatment (or otherwise). I also had full body pain, including my head and bad pressure behind my eyes.
I went to bed, thinking I could sleep it off...but of course with a racing heart I couldn't sleep.
I stayed up the entire night suffering and early a.m. when my husband woke up I asked him to stay home from work...that I may need to go to the hospital ER.
At about 8:00 a.m. (all symptoms still full on except the jerking of my arms) I had an epsom salt bath and went to bed...it took awhile, but I managed to fall asleep.

It was late that afternoon before my heart rate dropped a some and my fever started to drop.

By that evening, heart rate and temperature were normal. But, I had horrible all-over body pain. My head hurt to touch.

The next week I was supposed to take three days of abx...but I didn't. I couldn't...I was still feeling crappy...stayed home that entire week...in my pajamas...crying....lol.
My mind was going to really dark places....as I googled my medication side effects....etc.

Then on cycle 3 and 4 I only took the D and D on M/W/F with the other abx.

I had my appt. and Dr. j felt it wasn't the D and D, but Rifabutin herx. I didn't think so...lol.
He wanted me to do two more cycles and take the D and D for 5 days again (with the other abx)

Cycle 5 - I had a similar herx on the Friday of Week 1 again. Just not quite as severe. High heart rate, temperature and body pain...but it was pretty much gone by the morning...no jerking of my arms.

So,at this point - I'm still thinking Dr. J is wrong and it IS the D and D.

Instead of doing Cycle 6 ( the last one), I decided to do my next protocol he prescribed which doesn't have D and D in it...just Rifabutin, minocycline and ceftin. (it's my Maintenance protocol)
I did this for other reasons (won't confuse things and elaborate)

I took the three abx on M/W/F and Friday night, fever, high heart rate, body pain
(Not as bad though as the previous one)

Dr. J. is right - it's got to be the Rifabutin...and it's a herx. (I've been on ceftin and minocycline a lot before and never had this reaction)

Never herxed like that on Rifampin either.

Sorry - this is probably confusing to read.

Oh, my gosh, Girlie. Such a thorough reply. Sorry for all of us that endure this madness. The reason I asked about the bad herx is I am the caretaker of my wonderful hubby who is battling dementia. I need to have some sort of physical and mental faculties to provide what right now is the barest necessities of care. Such is life!

Blessings to all my fellow Lymies..

Patty

Post Edited (summer16) : 2/21/2019 2:49:37 PM (GMT-7)

Solaris719 said...
FYI, Rifampin is not a medication that can be pulsed.

Are you talking just about Rifampin (not Rifabutin)?


And are you referring to some cases of acute kidney failure when people went off it and restarted?

I take Rifampin everyday and Azithromycin every other day. My LLMD and I believe bart is the cause of my remaining problems, though, so we don't have a third antibiotic in there (although I do take some cats claw and japanese knotweed for the Lyme just in case).

Noah2112 said...
I take Rifampin everyday and Azithromycin every other day. My LLMD and I believe bart is the cause of my remaining problems, though, so we don't have a third antibiotic in there (although I do take some cats claw and japanese knotweed for the Lyme just in case).

Rifampin never did anything for my bartonella infection. I suspect I got antibiotic-resistant bartonella. It was susceptible to minocycline though.

Bartonella tends to die pretty quickly when exposed to an antibiotic that it is vulnerable to, and it smells really bad when it dies. I'd think you'd know if the antibiotics were working against bartonella.

Quin, what do you mean bartonella smells bad when dying?

I didn’t have a smell when I treated Bartonella.