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Herxing after 20 minutes on minocycline.

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Posted 2/4/2019 8:46 PM (GMT -5)

Girlie said...
Where are you getting your protocols/information from?

I'm not following any specific protocol because there isn't one. Various in vitro studies have found that bartonella can be resistant to antibiotics, but no one seems to have any idea what to do if you actually get infected with antibiotic-resistant bartonella. My doctor never considered the possibility that the bartonella infection would be resistant to so many antibiotics. I'm taking minocycline because it caused a herxheimer reaction which the other antibiotics did not. It's very frustrating because there's no good information available about how to treat something like this.
Posted 2/4/2019 10:57 PM (GMT -5)
That’s too bad that you’re having problems with bart being resistant to so many abx.

Dr J’s protocols are designed to prevent resistance to the abx - that’s why he has us taking at least 3 at the same time.

The Rifabutin is definitely “stronger” than Rifampin. and it doesn’t seem to be staining like the Rifampin does.
My pee doesn’t have the same intense colour that it had on Rifampin.

You could try the Persister meds Dapsone and/or Daraprim. Have you considered that?
Posted 2/5/2019 12:42 AM (GMT -5)

Girlie said...
That’s too bad that you’re having problems with bart being resistant to so many abx.

Dr J’s protocols are designed to prevent resistance to the abx - that’s why he has us taking at least 3 at the same time.

Unfortunately this bart infection seemed to be antibiotic-resistant from the start. I got it from a cat that was wandering around the neighborhood. The cat could have been on antibiotics already.

Girlie said...
You could try the Persister meds Dapsone and/or Daraprim. Have you considered that?

I considered that but after reading what you wrote about kidney damage it seemed safer to keep taking valproate as long as it was working. The side effects of valproate are annoying, but didn't cause any serious damage. The worst thing valproate did was brought out the dormant bartonella but didn't kill it.
Posted 2/5/2019 12:51 AM (GMT -5)
I don’t know yet if it’s the dapsone, daraprim or Rifabutin causing the kidney issues.

I’ll find out in a few days when I do the lab work.

I’m thinking now it’s likely the Rifabutin.

And even if it is one of the D’s - it doesn’t mean you’ll have the same reaction - I don’t know anyone else who is or had been been on these meds with lowering of kidney function.
Posted 2/5/2019 8:39 AM (GMT -5)
You're right Girlie.

For example minocycline seems to be a 'benign' drug but some people have died after taking just one pill... Others take levaquin without any problem and others die after one pill....

For me the most dangerous drugs independent of the subject are fluoroquinolones (everyone will be affected at different degrees even without noticing it) and antimalarias like mefloquine, chloroquine etc...

I don't think rifamycins drugs and dapsone are considered dangerous, but caution is mandatory when taking it, like you did, to detect what's causing your kidney issues.
Posted 2/5/2019 8:41 AM (GMT -5)
My worst fear is DRESS syndrome induced by minocycline (drug reaction with eosinophilia) that can be fatal and kill you fast.... in fact the three persons that dies it was the cause.
Posted 2/5/2019 8:44 AM (GMT -5)
https://shop.getmyid.com/blogs/myid-ms-community/personal-stories-hannah-was-here
Posted 2/5/2019 9:28 AM (GMT -5)
I have one doubt... If a person have to different bartonella species on the body like henslae and Quintana... They can transfer genes and multiply between henslae and quintana? I say it because my marks were dissapearing so fast the first 4 days and now it has stopped... and rashes remain here. Maybe two diferent bartonella in the same strech mark?
Posted 2/5/2019 9:31 AM (GMT -5)
The are other interrogants like when i was taking clarithromycin my rashes started to heal without herx... but on rifampin i have severe pannick atacks, anxiety etc... but my rashes doesn't heal as fast as i was on biaxin.
Posted 2/5/2019 9:37 AM (GMT -5)
Anyway i've been reading about interactions and the combination that use mozayeni doesn't seem to be "intelligent" because in a lot of scientist studies rifampin decrease up to 50% or more the concentrations of clari... so if a person is taking 1000mg day and 600 rifampin , it would be less than 500 biaxin per day... It's below the MIC of Bartonella... It means it's ineffective and if the people heal on that combo it's because rifampin works, i think. I've been talking with a veterinary that works together with mozayeni and he told me that people experience the best recovery when mozayeni increase rifampin at 1200mg per day (with an initial detroration and severe deep joint pain due to collagen destruction)

Another thing that i noticed is that i've been one month or two at past using rifampin at 300 twice day and nothing happen but when i say nothing is nothing... Now 11 days at 900 mg rifampin at once and rashes have dissapeared at 60% but it doesn't heal more now, maybe i have to wait. So it make me think that maybe a high peak blood level is more important than substained low blood levels... (Sorry if i don't say it correct, my inglish is not so good)

Post Edited (OriolCarol) : 2/5/2019 7:42:48 AM (GMT-7)

Posted 2/5/2019 10:54 AM (GMT -5)

OriolCarol said...
My worst fear is DRESS syndrome induced by minocycline (drug reaction with eosinophilia) that can be fatal and kill you fast.... in fact the three persons that dies it was the cause.

OriolCarol - I have read about DRESS syndrome (and SJ Syndrome) with Bactrim...but not with mino.
If it's with mino - it must be rare? Its' not usually mentioned.

So many people take minocycline just for acne and they take it for years. I've not heard of one person having a bad reaction from mino. Unless you consider blue teeth serious.
Posted 2/5/2019 10:59 AM (GMT -5)
Tes girlie. It's listed like a medication that can cause it but rare. Maybe 1 person every 5000/10000.
Posted 2/5/2019 10:59 AM (GMT -5)

OriolCarol said...
Anyway i've been reading about interactions and the combination that use mozayeni doesn't seem to be "intelligent" because in a lot of scientist studies rifampin decrease up to 50% or more the concentrations of clari... so if a person is taking 1000mg day and 600 rifampin , it would be less than 500 biaxin per day... It's below the MIC of Bartonella... It means it's ineffective and if the people heal on that combo it's because rifampin works, i think. I've been talking with a veterinary that works together with mozayeni and he told me that people experience the best recovery when mozayeni increase rifampin at 1200mg per day (with an initial detroration and severe deep joint pain due to collagen destruction)

Another thing that i noticed is that i've been one month or two at past using rifampin at 300 twice day and nothing happen but when i say nothing is nothing... Now 11 days at 900 mg rifampin at once and rashes have dissapeared at 60% but it doesn't heal more now, maybe i have to wait. So it make me think that maybe a high peak blood level is more important than substained low blood levels... (Sorry if i don't say it correct, my inglish is not so good)

Yes, it's known that biaxin and rifampin interact and each could be lowered (according to the drug interaction checker I use).
But doxy does that to some meds, too and it's still considered a good one to use. Not all LLMD's will use minocycline...even though it doesn't have that interaction.

The benefits must outweigh the negatives.
i listened to Dr. M's webinar a few times...and he increases - to double doses compared to what other LLMD's use.
He also will go to Rifabutin as well.
Posted 2/5/2019 11:06 AM (GMT -5)

Quin said...

Girlie said...
Where are you getting your protocols/information from?

I'm not following any specific protocol because there isn't one. Various in vitro studies have found that bartonella can be resistant to antibiotics, but no one seems to have any idea what to do if you actually get infected with antibiotic-resistant bartonella. My doctor never considered the possibility that the bartonella infection would be resistant to so many antibiotics. I'm taking minocycline because it caused a herxheimer reaction which the other antibiotics did not. It's very frustrating because there's no good information available about how to treat something like this.



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There are protocols that LLMD's prescribe that do work. That is their specialty.
The one thing that almost - if not all of the experienced LLMD's agree on is monotherapy isn't recommended.

Dr. J is an infectious Disease Dr. and has been treating lyme for many years....with success.
Posted Yesterday 7:07 PM (GMT -5)
Mino hits me hard too. My first year of treatment I tried a lot of drugs. Mino was the only one I couldn't tolerate. So a month or two ago I found my big bottle of Mino and tried it again after doing herbs only for about six months. It was intense! Major herx! But I stuck with it for about three weeks. The herx got easier, and when I was done with the bottle of Mino I noticed definite improvements compared to before I took it.
I haven't seen a doc in about a year because I was giving the buhner herbs a try. Now I think I'm going to find a doc to prescribe me more Mino. Amoxi, doxy, biaxin,flagyle,clindamycin, zithro, and all the other drugs I've been on didn't make me herx like Mino. Cats claw, Knotweed, cryptolepis, and the other herbs I've tried don't make me herx much anymore either. I can take the herbs at two droppers, three times a day and not herx much. So if herx is good, I think Mino might be the one for me
Posted Today 3:31 AM (GMT -5)

Girlie said...
I don’t know yet if it’s the dapsone, daraprim or Rifabutin causing the kidney issues.

I’ll find out in a few days when I do the lab work.

I’m thinking now it’s likely the Rifabutin.

And even if it is one of the D’s - it doesn’t mean you’ll have the same reaction - I don’t know anyone else who is or had been been on these meds with lowering of kidney function.


Apparently it's not rifabutin

https://www.healingwell.com/community/default.aspx?f=30&m=4104588
Posted Today 3:50 AM (GMT -5)
Yup - not Rifabutin... I’m ecstatic .

I just have to decide if I’m going to do the last cycle of persisters -
Posted Today 4:12 AM (GMT -5)

Girlie said...
I just have to decide if I’m going to do the last cycle of persisters -

Meaning you would take daraprim and dapsone despite the risk of kidney problems?
Posted Today 5:09 AM (GMT -5)

Quin said...

Girlie said...
I just have to decide if I’m going to do the last cycle of persisters -

Meaning you would take daraprim and dapsone despite the risk of kidney problems?

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I think I’ll call the clinic and ask the triage nurse about it.

I may - it is the last cycle - my kidney function bounces back each time. I was more concerned about it being from Rifabutin because it’s been prescribed as part of my maintenance protocol.

But the D and D - only one more cycle of 5 days and that’s it.

Still a concern though ...
Posted Today 3:00 PM (GMT -5)
Quin, before taking minocin did you had fever? Did you correlate the intake of minocin with the initiation of fever? I'm having fever and malaise on minocin.... Side effects, herx? Combination? mmm..
Posted Today 5:08 PM (GMT -5)
I was taking clarithromycin, amoxicillin, and valproate for Lyme disease. This caused a Herxheimer reaction, but it was mostly aching muscles and joints, in different spots, wherever the bacteria were dying that week. Unfortunately the bartonella was resistant to the antibiotics, and I kept getting bartonella relapses. The bartonella caused fever, an itchy rash, and hemolytic anemia. Once I started taking minocycline, it killed the bartonella and caused a Herxheimer reaction, with a fever, runny nose, and aching all over.
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