Bartonella progress question

Hi everyone. So I have been treating Bartonella with a pretty bare-bones protocol (just JK and Houtt) for the past 8-9 months now and have made a ton of progress. Late this summer, about six months in, I had somewhat of a "breakthrough" where it seemed that my energy level, clarity of thought, etc. had greatly improved and stabilized - basically, for the first time I started to feel like I was winning the battle.

In the months since, I can't really tell if I'm making more progress, but I definitely flare/herx with each and every dose of the herbs, 3 times a day like clockwork. My main symptoms are pressure in chest, pressure/burning in face (especially upper cheeks, close to sides of nose), brain fog, random pains/twitches in body and extremities. This usually comes on within an hour of the dose, and then starts to wear off in 3-4 hours. I usually feel pretty good after, but continue to experience "echoes" of these symptoms until the next dose and the cycle starts again.

My question is, is it possible that the flares/herxes are no longer Bart but just a reaction to the herbs or something else? I am trying to figure out if it even makes sense that I would have had an overall improvement in baseline, energy, clarity, etc. while continuing to have extreme "outposts" of Bartonella that react dramatically to herbs. Is Bartonella something that usually heals body-wide all at once, or can it go section-by-section in that infection in one tissue is independent of another?

I know there may not be a way to know for sure but I'm terrified of stopping early and relapsing if there's something there. Also, some of my pains are occasionally in typical "Bartonella" places like shins or heels which also make me wary.

Any thoughts/insights on this would be appreciated, especially if there is anyone out there who has healed from Bart and had a similar experience...

I wonder if you’re having an MCAS reaction. That doesn’t sound like a herx/flare. Did you have those exact symptoms before starting any kind of treatment?

What symptoms have gone away or improved with treatment?

Thanks all for the responses. All very helpful to consider.

dbwilco/potsnpans - Interesting you both had increased sensitivity after using herbs long-term. Does that mean the symptoms improved after you stopped? Do you consider the herbs to have gotten you to a cure/remission, or did you have to find other treatments after?

WalkingbyFaith - It's hard to remember exactly which symptoms have fallen off now but I definitely am experiencing less fatigue, better mood, and it's been a few months since I experienced a good old fashioned white-hot Bart rage haha. It's hard to gauge whether the aches/pains and twitches I have now are different or less prominent than what I had before. I did have many of my current symptoms (face/chest pressure, brain fog, pains/twitches) before treatment and/or on different treatments that were less targeted to Bart but may have still been hitting it.

Also, the MCAS topic has come up a lot on here and I think some of you have suggested it to me before. I guess my confusion is, would the MCAS be related to the herbs themselves, then? I had thought that it was supposed to be a byproduct of infection? Is the goal of the mast cell stabilizers (circumin, quercetin, etc.) to support continuing treatment? Or does it make more sense just to try quitting the herbs if they seem to be a problem?

Bart is the other one i often seen connected with mcas

as for me, i used cannabis for awhile to continue treatment (it is mast cell stabilizer),and it worked kinda, but i too became allergic to it...and stubbornly kept using it for over a year until i admitted it was making me worse (it still has benefits, and gave me a quality of life in the hours it wasnt flaring me)...

right now im off any treatment, and just trying to get the mcas under control...my biggest symptoms were mcas and pots which are both central nervous system...im not well...but currently im not making it worse, because after 5 years of treating i just got worse....my llmd says that mcas should resolve when the offending pathogen is gone, however i think at times the herbs or abx(maybe) become the very thing thats keeping the central nervous system jacked up...dnrs, meditation is helping me some...i will prob go back to abx if that doesnt get me to 75% or whatever

i have used herbs extensively to treat bart

around 30% of the herbs i use will produce some kind of herx - or increase in symptoms

however, this is usually a slow-building up type thing - ie build up over days or weeks from adding a herb - may be within a day if i take a lot - eg full dose of something i have not tried before or increasing a dose dramatically
eg when stepping up houttuynia from 1.5ml 4x to 3ml 4x it lasted 3weeks or more

only one or two give an immediate response - but this is usually mild - eg a tingling in my feet and quite tolerable from Red Sage root tincture - and fades after around 1hrs or less

it does sound like what you are experiencing is something else -
i don't think you would do much harm by stopping for a few days to see what happens and if you do feel it's worse - you can always go back on.

WalkingbyFaith said...
Mold is big factor in causing MCAS. Everything converges from all directions. If I am exposed to mold, I will have more MCAS symptoms triggered by food and treatments. When I am toxic, anything can trigger MCAS. When I am less toxic and in a clean environment, I can tolerate treatments and everything else better.

You had suggested I test for mold a few times I have been treating 2 yrs with severe neuro symptoms, mainly balance, cooridination, slurred speech and lightheadedness. I just got my Great Plains Mycotoxin results 10 minutes ago and you and also Traveler can both hopefully give me some understanding of it, the main concern I have is it shows:

Gilotoxin (Aspergillus) is 643.20 - s/b normal range less than 200
Ochratoxin A is 9.19 - s/b normal range less than 7.5
Citrinin (Dihydroctrinone DHC) 46.98 s/b normal range less than 25

Any information would help. Hope this explains why I have not recovered and in fact got worse.

Post Edited (sdarrah) : 12/4/2020 9:56:48 AM (GMT-7)

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Has anyone had this experience with herbals working in such an extended timeline?
//

1yrinVA:

I'm dealing with a similar timeline. This July will be 2 years of treating Lyme and Bart for me. I have only done LDN and herbs (JK Plus, CSA, Houttuynia, then dropping to just Japanese Knotweed for a while), though lately I am trying new things like some Microbe Formulas products. I have taken breaks from herbs and gone from 60 drops a day down to 1-5 drops because it seems the LDN has brought my immune system back online so I need less herbs. This whole time I have still been killing Lyme and Bart, it's been A LOT of ups and downs, and I am always questioning -- am I still healing?

But I believe I still am. Similar things happen to me with herbs, 1-2 hours after taking them I will herx (I used to herx in 30 minutes. I think I was that toxic). My herxes are MUCH milder now, thank god, and I can go days without having to take epsom salt baths -- I used to have to take them almost daily. That tells me I'm getting better. I'm also walking more, in heat and on hills, so my exercise tolerance and energy levels are better.

A couple weeks ago I was having horrible brain fog and fatigue and thought I was dying or getting worse -- well no, I was still herxing. It lifted and I feel better than before.

This has all been a very slow process, and if you told me in July 2019 that this was going to take 2 years I would have said that's insane. But it is going to take at least 2 years it seems, maybe more. Also, the longer you've been sick the longer it takes. I've figured out by now that my body can heal, but time is a huge part of the process -- I can't rush my body, it has its own schedule, and there is a lot of clean-up for the body to do.

I don't understand why people think herbs can't make you herx within 1-2 hours. If you can take Burbur Pinella every 20 minutes (which I do) and feel effects from it then the same is true of other herbs. The body reacts that quickly. I will take Burbur Pinella and 15min later be sweating, smell, and have to pee a ton. That is not MCAS, that is the herbs detoxing me.