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Bartonella GI symptoms, Quin or others

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Posted 2/18/2023 12:19 PM (GMT 0)
Good morning.

I have been sick since August 2021 with bartonella and lyme. I have had a lot of gi symptoms pretty consistently and I believe they are bart related.

I am currently on bactrim, rifampin, liposomal cinnamon clove and oregano oil, and am titrating up on methylene blue.

To be honest, the methylene blue seems to hit it harder than anything else. Or perhaps it in combo with the other things.

The purpose of this post is to say that as I try to increase the methylene blue, my gi symptoms are also increasing and it is hard for me to tell is this a gut herx? I tend to panic then skip a day of meds to let it settle down when I guess my question is: is this a necessary part of getting it out of my gut and I need to just proceed? I'm taking tons and tons of probiotics.

Has anyone else had major gi involvement with bart? Do I just push through it? Any help would be appreciated.

Thank you!!!
Posted 2/18/2023 12:53 PM (GMT 0)
my partner and i both had a lot of gut issues with bart and lyme

for both of us the single biggest thing we did that helped my gut was changing to a ketogenic diet ( actually this helped the systemic symptoms more than anything else i did also)

in terms of why this helps - its clear these conditions cause hyperpermeable gut membrane ( leaky gut) - so unwelcome food molecules - and fragments of even normal commensal gut bacteria are passed into the blood stream and drive inflammation - and that causes reactivity to foods and an inability to to tolerate anything that feeds the gut bacteria / kills gut bacteria - as this leads to more bacterial by products in the blood.
even probiotics can drive more of this not less

a ketogenic diet restricts carbohydrates - which is what the majority of gut bacteria eat - and so this leads to less gut bacteria and less fermentation in teh small intestine - which is easier for your system to manage - less bloating - less reactivity to foods etc - and less by products in your blood.
so basically it takes a load off your immune system so it is better able to focus on what its supposed to be doing - ie fighting off infections

its well worth a try if you haven't done so already

i also think bart just causes inflammation whenever you kill it - as a herx reaction. its known to infect the lining of the gut - and so when you kill it there you often have increases in the usual symptoms of gut discomfort / reactivity - constipation/diarrhoea etc etc for a time

many many people with bart seem to be stuck with this kind of treatment dilemma - where we have to treat to get better - but whenever we treat we are limited in how much we can go after it because the herx like treatment reactions are too much to tolerate

it may be that we just have to do what we can to offset the inflammation as much as we can before and during treatment
or just go v slow and low to keep the herx like reactions to manageable levels ( i know that's hard with pharma drugs as they tend to come in standard doses )

there can be some connection between what we experience as herx and mast cell reactions - in that sometimes mast cell stabilisers like quercetin, and sometimes anti-histamines etc can have a calming effect on the herx symptoms - this seems highly variable from one person to the next - but could be worth experimenting with.

could also be worth experimenting with trials without the probiotics also - as these can often make sensitive guts worse - not better
Posted 2/19/2023 11:42 AM (GMT 0)
That seems pretty typical. Bartonella herx caused me a lot of GI issues. Once I got rid of the bartonella it resolved.

Often I found that it was better to eat something just so I could poop it out. I would then get diarrhea and it smelled awful, but this would help get some of the toxins out.

If you need to skip a day of antibiotics that's okay. I kinda doubt you could absorb much of an oral antibiotic when you're detoxing like that and your gut is dumping everything out. I don't think probiotics would help much either, since it's all gonna come out anyway.
Posted 2/20/2023 7:14 PM (GMT 0)
Dear Quin and Garzie,

Thank you both so much for writing back!

I guess I will just need to accept that this is a part of getting better is getting it out of my gut and it will be uncomfortable. It does seem to be a clear cause and effect situation - increase MB, increase in GI symptoms.

Quin, I know you said Minocycline helped you target bartonella right? I am adding that to my protocol next.

Best
Katie
Posted 2/20/2023 8:48 PM (GMT 0)
I did have success with minocycline, yes. Minocycline tends to be one of the few antibiotics that bartonella does not easily develop resistance to. Bactrim was also effective, but I found that bactrim messed with my kidney and adrenal function too much.

The downside of minocycline is it is anti-inflammatory and suppresses the immune response. I often had to take a day or two off the minocycline just to let my immune system recover and clear out the dead bacteria.

If you are getting an increase in symptoms, you want to be sure the bacteria are actually dead. Some antibiotics can disturb the dormant bartonella without completely killing it, and this just spreads it around and potentially makes it worse. I didn't have that problem with minocycline though.
Posted 3/23/2023 11:18 AM (GMT 0)
Hi Quin, Good morning. I added minocycline to my protocol a week ago. I'm now on 100mg twice a day. My stomach is a mess. Could be herxing I guess. I'm on my usual tons and tons of probiotics. How long did this all last for you before noticing improvement?
Posted 3/24/2023 10:50 PM (GMT 0)
Minocycline would give me diarrhea no matter what. It seems to last longer than most other antibiotics. Even if I waited 12 hours before eating and took probiotics, I would still get diarrhea.

The difference was that when I herxed from bartonella it would smell real bad. It was also a lot more painful in my stomach, and I would get dark urine (bilirubin). This went on for several months. Now when I take minocycline, I still get diarrhea but it does not smell so much. I've mostly stopped the minocycline now, but have taken some from time to time just to make sure the bartonella is really gone, and so far, so good. I get some muscle aches from borrelia die off, but no signs of bartonella.

If you can't tolerate minocycline, you could try an antibiotic with a short half-life like clarithromycin. The problem is that bartonella is usually resistant to clarithromycin and it just won't work well enough. I found that combining clarithromycin with atovaquone (mepron) would overcome bartonella's resistance to it. Another forum member reported success combining clarithromycin with black walnut:

https://www.healingwell.com/community/default.aspx?f=30&m=4308409
Posted 3/25/2023 2:48 PM (GMT 0)
Good morning everyone,
Question:
I am on my bartonella protocol since January: Bactrim, rifampin 600mg a day, MB 100 mg a day, liposomal cinnamon clove oregano oil.
I felt like I was making progress. I added boluoke into the protocol at one per day for both biofilms and also because my legs were tingling a lot and I wondered if it might be vascular rather than CNS related.
I took boluoke for 8 of 10 days (skipped two random days). By day 10, all of my bart symptoms went wild (this started to be noticed on more like day 6 but I thought it was manageable). By day 10, my feet were killing, my legs were killing, just all symptoms were much worse. I thought it could possibly be herxing. I stopped the boluoke to calm things down while obviously staying on my protocol. That was 2 weeks ago today. I have only slipped further down the proverbial ladder. I am having more leg pain, more foot pain, more ice pick headaches, insomnia - my bart symptoms. I am trying to figure out what happened. Did I basically reinfect myself? Did I release more than this protocol can handle? Does my protocol need an upgrade?
I see my dr Tuesday and am thinking of asking to increase dosages of things (perhaps take rifampin from 600 mg per day to 1200 per day OR switch to rifabutin, and/or increase MB.
Does anyone have any thoughts? I definitely feel my bart infection is worse now and almost as if I hadn't treated at all. So, something isn't working here....
I appreciate input. PS, I do NOT have MCAS. Just for informational purposes.
Katie smile
Posted 3/25/2023 4:05 PM (GMT 0)
Hi Katie

i have bart and lyme - and when treating bart my symptoms often flare for up to 2 weeks whenever i step up my treatment protocol
whether by adding more antimicrobials or even just adding more Enzymes like bromelain - or especially Lumbrokinase - i had to stop that after a few days of that as i just couldn't handle the herx like reaction

my best guess is you have just done a bit too much too soon and its taking a while for it to calm down.
in my experience the bigger the flare the longer it takes to cam down, and you still have a lot of antimicrobials going in - of different types so i very much doubt the bart infection is actually getting worse - more likely the herx reaction is just a long and hard one

its always worrying when you have a flare of symptoms - but it should calm down in another week or so
Posted 3/25/2023 4:13 PM (GMT 0)
My Bartonella/Persisters protocol was very intense.

Dr J had me on Rifabutin, Ceftin, minocycline, Dapsone, Daraprim, Tinidazole.

I herxed badly on it but it got me to remission
Posted 3/26/2023 9:15 AM (GMT 0)
Certain things will cause dormant bartonella to wake up, and this can cause a flaring of symptoms, but can be necessary to get the bacteria into a state where they are more vulnerable to killing with antibiotics. You may need to back off a bit if it's too much.

Bartonella herx can be quite intense. I did it with fewer different drugs than Girlie, but you don't want to use just one because bartonella easily becomes resistant to a lot of things. I was able to narrow it down to 3 or 4 different meds, which helped to reduce the side effects. Of course, the die-off is still a problem that's hard to avoid.
Posted 3/26/2023 4:31 PM (GMT 0)
Anyone here ever herx from digestive enzymes? I have tested positive for bartonella and also have ulcerative colitis, so hard to know if the bartonella is causing the colitis, but possible.

Anyway, just started taking digestive enzymes again recently and although it's been helping my digestion, I've been getting headaches ever since starting the enzymes. Wonder if the enzymes are breaking something down and causing it to spill out and causing a herx...
Posted 3/26/2023 4:48 PM (GMT 0)

NorthCountry said...
Anyone here ever herx from digestive enzymes? I have tested positive for bartonella and also have ulcerative colitis, so hard to know if the bartonella is causing the colitis, but possible.

Anyway, just started taking digestive enzymes again recently and although it's been helping my digestion, I've been getting headaches ever since starting the enzymes. Wonder if the enzymes are breaking something down and causing it to spill out and causing a herx...

there are papers in the scientific literature documenting bartonella causing colitis in humans

sometimes associated with an auto-immune biliary tract disease

4 weeks of vancomycin (and ABX that stays largely in the gut when taken orally) was found to be effective in treating it.

ref enzymes - man of us with bartonella are treating with fibrinolytic enzymes ( enzymes that disolve fibrin in the blood) alongside antimicrobials - as bart tends to cause massive excessive fibrin deposits that hinders treatment

i mention this because many digestive enzyme supplements also contain enzymes designed to help digestion of proteins in food - but which may also, as a by product, dissolve the fibrin ( a protein) in the blood.

its very common for those of us with bartonella to get increased symptoms from herx like reactions when we take such enzymes - headache being a typical one, sleep disturbance, fatigue and body aches being other typical ones for me - i have had to build up the dosage of these enzymes very slowly due to this
Posted 3/26/2023 9:16 PM (GMT 0)
Many digestive enzyme brands are derived from Aspergillis molds. I have mold illness and felt worse taking those (Enzymetica brand). My mold doc put me Orthomolecular brand Digestzymes instead, which are not derived from mold. I did well on those and have taken them for years.
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