For Girlie (Biaxin pulsing question.)

Hi Girlie, Merry christmas! I hope you're well!

I've been treating with the herbs and progress has been a bit hit and miss. The possibility of antibiotics is back on the table. I was wondering, what dose did you pulse of the biaxin when you were treating your bartonella?

I was taking biaxin with rifampin when I was treating with a LLND (prior to Dr. J)

He initially had me on mino with the riffy....and after a few months on it, I asked to switch to biaxin.

I started with daily dosing....and then switched to pulsing - I believe for about 6 months.

I didn't have the usually described herxes until I signed up at the J Clinic. I had never had a fever and the herxes weren't always identifiable - as I always had a worsening of my pain symptoms late afternoon/early evening - even prior to treatment.
When I was on Dr. J's persister/bart protocol...which was a 4 week cycle of pulsed abx, I would herx on the friday of the week 1. I would get a fever Friday evening...and head pain - my head hurt to touch it. The herx after my first cycle - almost sent me to the Emergency. Besides the fever and sore head, my arms started jerking uncontrollably. My week 1 consisted of Ceftin and Rifabutin taken M/W/F
and...Dapsone, and Pyrimethamine taken M/T/W/Th/F

After the first two cycles - (I called the office...and asked if I could take the Dapsone and daraprim just M/W/F because of my horrible herxing.) They agreed.

Also took Diflucan and Flagyl (or substituted Tinidazole) on Th/F.

My week 2 :
Mino, Rifabutin, Clindamycin taken M/T/W

During week 3 and 4 I took Alinia for 5 days straight. (my choice which 5 days)


I believe I was on it for 7 months. (August/18 to Feb/19)



Re: improvements. I have never had any "wow" moments. My individual symptoms gradually, slowly....lessened over time....so very hard to track. I started with over 30 symptoms...Yes, I lost some prior to the persister's protocol with Dr. J....and also after.

Sorry, not too clear - to help you!!!

I have been on Maintenance now - and I only take my abx (Ceftin,Mino, Rifabutin) M/W/F and I do feel lousy on the friday. In fact a few cycles ago, I had a fever...and thought I might be turned away at my Residential Care job...but the fever had abated just prior to starting my shift....

Cignet said...
Well I have been learning from a bartonella suffer called "Bartonella Babe" on youtube. Apparently, Dr M sees a lot of people suffer from uveitis when using clarithromycin and rifabutin.

Apparently it's between 8-36% of people who use the combo. He also hypothesises that it's an eye herx. I just wondered if Dr J mentioned it, I tried the rifabutin earlier this week and was worried about it so I just decided to wait until I get the prednisolone eye drops on the off chance that I do develop it. I doubt I will though, given that it's pulsed therapy.

Yikes 8-36% - possibly 1/3!

I will make a note to ask Dr J about it at my next appt.

Can I get prednisolone eye drops at the pharmacy without a prescription?

Hopefully the pulsed protocol will work to ward it off - I would think so.

Please keep us updated re:Uvelitis

Hope it clears up!!

Yes, there was always weeks off (if that’s what you mean by drug holidays)
- starting with my first protocol with the J clinic.
Drug holidays are generally a couple weeks off (not months)

I have also read online (not the forum) that Rifampin is sometimes pulsed for tuberculosis.

Sorry - haven’t gone thru my stack of papers to check what my previous LLND schedule was -
I just finished my 4 days in a row work and now have 6 days off..
yee -haw!!

So with my previous LLND - when he prescribed it - it was daily Rifampin with mino.

After a long while treating bart (like over a year ) I started taking a week break after two weeks on... but the two weeks on I was taking it daily.

With Dr J - it’s not daily plus there’s two weeks off the Rifabutin (after two weeks on)
(Although on week two - Rifabutin was taken M/T/W after taking it M/W/F the first week.

Thanks for all that you do Girlie

I am suffering still, I am treating again as I had issues with my gallbladder and it was removed.

I am on disulfiram and intend to go for 8 weeks at this dose. Previously I tolerated full dose rather well. I don't react to alcohol or anything either, shockingly.

I am also going to do Dr Mozayeni's Protocol of Rifabutin and Clarithromycin as well.

The thinking is that my vagus nerve is dysfunctional due to bart and that's why my gallbladder stopped working along with my stomach. May be doing a gastric emptying study soon. Did SIBO tests and nothing came up. Treated with anti SIBO and SIFO herbs but not much so gonna treat bart.

Also think that the air hunger was attritbuted to babs when it was likely to be gastroparesis leaving me short of breath, which is probably caused by bart, given my lack of reaction to antimalarials.

Cignet said...
How about yourself how are you doing? How are things with the hubby is he alright still? You've both gotten through COVID and all the struggles you faced?

I’m doing well! I am back to work after being off for over 6 years!
Hubby is good. Life is good.
He got a promotion at his job and I work in an elderly care home - in the kitchen as a Cook’s assistant.

Not only did we both get Covid - but a few months prior to that - we had the RSV.