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Question for Girlie about Dr J pulsing Rifampin

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Posted 7/28/2020 11:12 AM (GMT 0)
Hey Girlie,

I've been trying to look through the forums to find out how you got on pulsing rifampin. I think I'm going to have to take it so I was just wondering how things went with you pulsing it?

What was your protocol with Dr J pulsing? I have seen other's state that they pulsed but they claim to have signed "non disclosures" about the medicines that they took. I know rifampin is one of them and I think that I'll be able to tolerate rifampin if I'm taking it on a pulsed schedule. I just want to gain some ground, this whole year has been hell.

I might be getting some clarithromycin too, which might be elpful as I've heard it's one of the heavy hitters for bart as well (decreases in concentration when used with rif though.)

I have an appointment with an LLMD in 6 months or so, which is a long way away and a long time to wait in so much pain... I also have an offer of IV ceftriaxone for one month but it's also going to cost several thousand for the month... Trying to figure out my best options here.

I am definitely not trying disulfiram again as it seems to have worsened symptoms and this points to bartonella more so than anything else I think. Anyone seeing this please do not recommend it as I have nearly seriously hurt myself on even the lower doses and I am sure that I can get better without it, after all, plenty of people have reached remission/cured themselves without it. Not to trash anyone elses hopes.
Posted 7/28/2020 1:51 PM (GMT 0)
not to derail your thread - but I read that Rifampicin should not be pulsed as there is an increased risk of allergic reactions to it if pulsed. seems to be a known issue with Rifampicin - but not something that happens often with most antibiotics.

I think this was covered by Dr Horowitz in his book or online videos. i don't have the reference for it but remembered as I have been taking it in the last 6 months
Posted 7/28/2020 3:13 PM (GMT 0)
“ not to derail your thread - but I read that Rifampicin should not be pulsed as there is an increased risk of allergic reactions to it if pulsed. seems to be a known issue with Rifampicin - but not something that happens often with most antibiotics.“

I have never heard about pulsing causing an allergic reaction.
I have heard people mention that you can’t pulse any meds for Bart because it will become resistant.

But I trust Dr J. He is one of the most experienced and knowledgeable llmd’s and has success. He also happens to be an Infectious Disease Dr.
Posted 7/28/2020 3:17 PM (GMT 0)
Dr J prescribes Rifabutin (same class as Rifampin.)
I don’t know if he also prescribes Rifampin.

I take it with minocycline and Ceftin.
Also take either Flagyl or Tinidazole .

Do you want to email me and I can give you more info?
Posted 7/28/2020 4:35 PM (GMT 0)
Hey guys,
Yes Dr. J prescribe Rifampin, and pulse it like other antibiotics.
(that's my protocol right now)
Posted 7/28/2020 5:15 PM (GMT 0)

Alxander said...
Hey guys,
Yes Dr. J prescribe Rifampin, and pulse it like other antibiotics.
(that's my protocol right now)

Did he say why he didn’t prescribe Rifabutin instead of Rifampin?
Posted 7/28/2020 5:32 PM (GMT 0)
No, but I'll ask him at my next appointment! smile
Posted 7/28/2020 5:36 PM (GMT 0)

Alxander said...
No, but I'll ask him at my next appointment! smile

Thanks - I am curious - I find Rifabutin to be stronger - ie have had some bad herxes on it.

I had taken Rifampin with my previous LLND.
Posted 7/28/2020 6:25 PM (GMT 0)
Rifampin have been a walk in the park for me.
Actually most of Dr. J protocol has been so far,
Hence why I think of asking him for a bit of Disulfiram in addition to the rest in my next appointment.
Wondering if everything is hiding in biofilm...
Posted 7/28/2020 6:51 PM (GMT 0)

Alxander said...
Rifampin have been a walk in the park for me.
Actually most of Dr. J protocol has been so far,
Hence why I think of asking him for a bit of Disulfiram in addition to the rest in my next appointment.
Wondering if everything is hiding in biofilm...

But, you should be taking the biofilm busters - xylitol and lactoferrin.

So no herxing? Maybe ask him for the Rifabutin.

Did you do the dapsone and daraprim when you were on the Rifampin?
Posted 7/28/2020 7:22 PM (GMT 0)
I do the xylitol and lactoferrin smile
I had 2 days of light vertigo when I initially added those 2 to my protocol, but after that, nothing impressive.

The reason I'm talking about disulfiram is because how lots of folks seems to think it the best biofilm breaker. I think that's Dr.H. opinion too.

I didn't do the Dapsome daraprim yet.

With Rifampin, I take mino, bactrim, and 1 week out of 4, Pyrmethamine+Leucovorin.

So far my journey was:
Stabilization protocol: 3 months
Babesia protocol: 6 months
Bart protocol: close to 3 months
Posted 7/28/2020 7:28 PM (GMT 0)

Alxander said...
I do the xylitol and lactoferrin smile
I had 2 days of light vertigo when I initially added those 2 to my protocol, but after that, nothing impressive.

The reason I'm talking about disulfiram is because how lots of folks seems to think it the best biofilm breaker. I think that's Dr.H. opinion too.

I didn't do the Dapsome daraprim yet.

With Rifampin, I take mino, bactrim, and 1 week out of 4, Pyrmethamine+Leucovorin.

You do the Rifampin/mino/bactrim for 1 week, as well, right?

So far my journey was:
Stabilization protocol: 3 months
Babesia protocol: 6 months
Bart protocol: close to 3 months

Posted 7/28/2020 8:23 PM (GMT 0)
Girlie - I think you forgot your replie! ;-)
Posted 7/29/2020 12:12 AM (GMT 0)

Alxander said...
Girlie - I think you forgot your replie! ;-)

Lol - I got interrupted by an important phone call - must have hit send

Now to remember what I wanted to say......
Posted 7/29/2020 10:05 AM (GMT 0)

Girlie said...
I have never heard about pulsing causing an allergic reaction.
I have heard people mention that you can’t pulse any meds for Bart because it will become resistant.

The problem that I had was that antibiotic treatment can disturb dormant bartonella. If I stopped the antibiotics, it only took a few days for bartonella to become active again. Sometimes I would do a pulsed protocol where I would stop all the other antibiotics but take a small dose of minocycline after a few days just to deal with the bartonella. The minocycline would cause an obvious bart herx (dark urine and ammonia smell).

I guess that the tendency of certain antibiotics to make bart flare is a resistance mechanism, so maybe it is the same thing. ie, when bart is stressed with abx, it becomes metabolically active and produces enzymes or efflux pumps or whatever other mechanism it uses to eliminate antibiotics. I don't know if this has been verified in vitro.
Posted 8/6/2020 10:40 AM (GMT 0)

Girlie said...
“ not to derail your thread - but I read that Rifampicin should not be pulsed as there is an increased risk of allergic reactions to it if pulsed. seems to be a known issue with Rifampicin - but not something that happens often with most antibiotics.“

I have never heard about pulsing causing an allergic reaction.
I have heard people mention that you can’t pulse any meds for Bart because it will become resistant.

But I trust Dr J. He is one of the most experienced and knowledgeable llmd’s and has success. He also happens to be an Infectious Disease Dr.

I understand
in the end, there are no risk-free treatment options so we each have to make our own assessments.

here I am just sharing what I read when I did my own research into which antibiotics are safest for me.

I think the concern is based around articles like this one that highlight elevated risk of the allergic response to rifampicin if it is used intermittently
https://journals.sagepub.com/doi/abs/10.1177/0049475517724689?journalCode=tdoa

I also found articles stating that the allergic reactions became much more severe on the re-introduction of rifampicin in those that are affected, increasing the risk of serious or life-threatening effects. That is a well-documented chartateristic of other medicine induced allergy responses.

with herx symptoms being so varied and hard to tell apart from disease progression and other side effects, based on this information I decided to use it continuously or not at all.
Posted 8/6/2020 2:52 PM (GMT 0)
I didn’t look at the link - is that about kidney failure?
Posted 8/7/2020 3:07 AM (GMT 0)
Sorry - I worked today and haven’t read my emails yet.

Might not get to them until tomorrow. Hope that’s ok ?

Finally working after 6 years off !!
Posted 8/7/2020 9:46 AM (GMT 0)

Girlie said...
I didn’t look at the link - is that about kidney failure?

nope

Intro reads as follows:

"Introduction
An immuno-allergic reaction is an uncommon but
severe adverse reaction following intermittent rifampin
administration. The clinical features of such a reaction
consist of disseminated intravascular coagulation
including fever, hypotension, abdominal pain and
vomiting within hours of ingestion. Future rifampin
administration may subsequently be life-threatening
and hence is contraindicated. We describe a patient
with borderline tuberculoid Hansen’s disease who presented with disseminated intravascular coagulation
after ingestion of rifampicin"

I found several papers much like this one when I was doing my research.
as I said i am just sharing my findings - not trying to tell anyone else what they should or should not do.
Posted 8/7/2020 3:36 PM (GMT 0)
Just Rifampin or does it include Rifabutin?

(Same class but different drug)

Rifabutin is dr J’s preference over Rifampin.

If we’re talking about allergic reaction - that can happen with many drugs - lyme and CO’s abx included.

You have to weigh the risks of each med and decide.
I do that with all the abx.

I don’t want to take bactrim or the fluoroquinolones because of their risks... etc.

But I have taken Azithromycin even though there is risk of Long QT
Posted 8/7/2020 5:24 PM (GMT 0)

Girlie said...
I don’t want to take bactrim or the fluoroquinolones because of their risks... etc.

But I have taken Azithromycin even though there is risk of Long QT

Hi Girlie can you please tell me why you are reluctant to take bactrim? Does it have a black box warning? Thanks.
Posted 8/7/2020 6:28 PM (GMT 0)
It can cause Steven Johnson syndrome.
When I googled SJS it freaked me out.

There’s a website dedicated to bactrim damages - I think the UK has restrictions on prescribing it.

https:// https://briandeer.com/bactrim-septra.htm

We all know that all medications (not just abx) come with side effects/risks and potential for allergic reactions - and we have to decide if we are willing to take those risks.

https:// https://www.mayoclinic.org/diseases-conditions/stevens-johnson-syndrome/symptoms-causes/syc-20355936

Interestingly Advil is on the list.
Posted 8/7/2020 6:35 PM (GMT 0)
Dr J prescribe bactrim when I first went there and I did reluctantly take it for a few days and I developed some lesions - maybe three and I took a photo - sent it to the J clinic and they said it didn’t look like SJS lesions - but I was already freaking out and decided to dump it.
Posted 8/7/2020 9:43 PM (GMT 0)
I also was prescribed that junk. I looked up some evidence, statistics, etc. There is no way to know if some will have bad side effects, so i choosed not to play the russian roullete with so many alternatives available, better safe than sorry.
Posted 8/7/2020 10:46 PM (GMT 0)

isitlyme said...
I also was prescribed that junk. I looked up some evidence, statistics, etc. There is no way to know if some will have bad side effects, so i choosed not to play the russian roullete with so many alternatives available, better safe than sorry.

Are you referring to Bactrim?
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