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bartonella....rifampin or...? houttunia...? does anything kill it, that doesnt kill us?

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Posted 9/14/2018 12:07 PM (GMT 0)
ok, i assume my lingering issues are bart

gastritis, neuro brain fog, nerve aches in leg and down spine, tingling...

my llmd SP in Ct does a series of lesser rounds before he uses bigger drugs- for all his knowledge he is very different from Dr J in that he is cautious and takes his time as he factors in risk....but he also has had over 20,000 patients so he clearly knows his stuff

usually starts w tetra, diflucan and oil of oregano (diflucan for lyme, and also bc it slows liver down and increases the effectiveness of other drugs), then will move onto his "triple threat", which adds mepron (he feels that mepron hits things beyond just babs- i actually got swollen lymphs during that, which he says is bart)...then did some liposomal art w tetra and got bart streaks on arm (liposomal from hopkinton drug hits alot harder that normal art im told)

still not getting better after a yr, but he mentioned rifampin last meeting, but wants me to do galaxy test for bart too, bc of side effects of drug...he suspects i have it, and he is actively working with Dr M and Breitschhwermer (sp) to find a drug cure for bart right now...says probably couple yrs away from human testing, but so far he is very hopeful that what they have found will be better than anything available "by a mile...will have no blebbing" (microbial dandruff that bugs leave when being killed/pissed off that cause our immune system to go haywire and causes our symptoms- what most of us call herxing, but he says herxing is only when clearly better after the downturn)

so anyways, right now im doing herbals for bart....im hesitating to do abx that can bring out new symptoms and potential side effects...plus i dont think anything kills bart right now...if i do rifampin, ill be too sick to work, lose insurance/$ and wont be able to pay for treatment...i missed alot of work just on what ive taken so far as i have mcas and my herxes included severe Pots and other scary things...

just realized im rambling, so my question....is there anything that you think actually gets rid of it? im not doing cipro or levoquin
Posted 9/14/2018 12:32 PM (GMT 0)
I would not pay for more testing since you have the Bart symptoms and rash. Its clear you have Bart.

What herbals are you using for Bart currently?


Houttuynia is a must.


So I have Bart also. When I took malarone for 5 months(similar to Mepron) my Bart came out very intense since malarone knocked back Babesia.


After one year of ABX I changed to doing Buhner Bart protocol for over a year now. No abx. While I have made some improvements and had 3 to 4 days no symptoms I still have Bart symptoms with flares or when I add anything new in(herx). Also when I use armetisian or Bidens.


I was under the understanding That Dr P is a Bart specialist and they treat with ABX and just a few herbals., is that not true?

Do you know if they use dapsone at all?
Posted 9/14/2018 1:20 PM (GMT 0)
I've been treating Bart relapse for a long time. Currently on Rif, Clarithromycin, Nystatin, and Alinia, along with Isatis, Hout, Alchorina blend and JK plus both form WE. Before this protocol I was on the Tetra, Diflucan, Alinia and OoO 2 week pulse protocol. My LLMD consults with Dr P and Dr H often. I have even tried Levaquin (and was Floxed) and then Cipro fully aware of the risks.

Bart is a b*tch to get rid of and whenever I wean off abx and stay on the herbs for maintenance it has always came back.

I'm open to a Dapsone combo and will discuss with LLMD next appointment.
Posted 9/14/2018 1:25 PM (GMT 0)
Bart is horrible for me too. I just stopped 6 months of rifampin with biaxin/zithromax (switched back and forth). I stopped last thursday to start focusing on my gut and all my bart symptoms seem to be coming back full force.

Foot pain is terrible in the morning which is the indicator I use to determine how well or not well my treatment is working.
Posted 9/14/2018 2:16 PM (GMT 0)
I'm wondering if it's better to make sure you get all the other co-infections first. I have no idea really. I had a pretty bad case of bartonella. I think the A-bart drops and boneset did the most for me. In the process of treating all different herbs, I've got to where I'm feeling pretty good, but I still have a pretty big bartonella rash. I still get a lot of intestinal cramps sometimes, though.
Posted 9/14/2018 2:31 PM (GMT 0)
Sida acuta and houttynia are the main Buhner herbs for bart. Sida hits me harder but houtty helps symptoms more for me. Sida is for babesia also, so you get 2 for 1.
Posted 9/14/2018 2:37 PM (GMT 0)

dbwilco said...

my llmd SP in Ct does a series of lesser rounds before he uses bigger drugs- for all his knowledge he is very different from Dr J in that he is cautious and takes his time as he factors in risk....but he also has had over 20,000 patients so he clearly knows his stuff

usually starts w tetra, diflucan and oil of oregano (diflucan for lyme, and also bc it slows liver down and increases the effectiveness of other drugs), then will move onto his "triple threat", which adds mepron (he feels that mepron hits things beyond just babs- i actually got swollen lymphs during that, which he says is bart)...then did some liposomal art w tetra and got bart streaks on arm (liposomal from hopkinton drug hits alot harder that normal art im told)

. . . he is actively working with Dr M and Breitschhwermer (sp) to find a drug cure for bart right now...says probably couple yrs away from human testing, but so far he is very hopeful that what they have found will be better than anything available "by a mile...will have no blebbing" (microbial dandruff that bugs leave when being killed/pissed off that cause our immune system to go haywire and causes our symptoms- what most of us call herxing, but he says herxing is only when clearly better after the downturn)

Thanks for sharing all that. I hope it won't be a sulfa or quinoline drug and hope it will work much faster and not have to take it forever and a day or in combination with a bunch of other stuff. That' one I'd be willing to take if it wouldn't kill me. I can't tolerate much either. That's why I do herbs, and it's not helping me much anymore.
Posted 9/14/2018 2:46 PM (GMT 0)
i jump back and forth between my llmd and a naturopath....right now i am about to see my naturopath who will give me a mix of different herbs that i "test for" using electro-acupuncture or something like it....ill get a mix of diff herbs from buhner,cowden,byron white etc.... i just dont want to keep doin abx for bart if it isnt gonna get me well, as at least with herbs im not messing up microbiome and having side efffects (not to mention the cost of an appt vs insurance covered NP)....IF there was a abx that worked and cured it, id suffer through the herx, but i dont see the point right now with available options...ive been told levaquin works but im not willing to take that risk...

dr p is a bart expert, but dont believe he uses dapsone...as i said he is working with the galaxy guys along with johns hopkins (zhang), duke (spector) and tulane (embers) coming up with a drug on their own...a true dream team that i hope makes this post moot in a couple yrs...the question is what to do til then...im hoping herbals and rife can keep it at bay i guess

Post Edited (dbwilco) : 9/14/2018 8:49:27 AM (GMT-6)

Posted 9/14/2018 3:05 PM (GMT 0)
So were you treating Babesia with Mepron for the past year?

... and you didn’t have any symptoms resolve or improve?


I don’t find Rifampin to be that bad - Mepron was worse for me.
Posted 9/14/2018 3:31 PM (GMT 0)
Sp doesnt believe in months of babs treatment ( we discussed his differing view from dr j)...i did 2 21 days of mepron-zith and another 21 days of mepron-tetra-diflucan-ooo...have also done liposomal art, and crypto
Posted 9/14/2018 3:36 PM (GMT 0)

dbwilco said...
Sp doesnt believe in months of babs treatment ( we discussed his differing view from dr j)...i did 2 21 days of mepron-zith and another 21 days of mepron-tetra-diflucan-ooo...have also done liposomal art, and crypto

Interesting.

Most llmd’s will treat Babs for at least 4 months because of the parasite residing in red blood cells - and the life span of the rbc..
Posted 9/14/2018 3:41 PM (GMT 0)
yep, we talked about this...he is an outlier in that regard...he believes most babs reported symptoms are in fact bart....he eventually adds other things like alinia and other anti parasites abx...not that it matters, but i tested quest positive for babs igg, and igm...after 2 21 days, no longer igm positive...like testing matters

Post Edited (dbwilco) : 9/14/2018 9:46:12 AM (GMT-6)

Posted 9/14/2018 4:50 PM (GMT 0)
i guess the overall question is has anyone ever cured bart, and if so, how??
Posted 9/14/2018 5:11 PM (GMT 0)

dbwilco said...
i guess the overall question is has anyone ever cured bart, and if so, how??

I don't know if I still have bart....I think that's what my remaining symptoms are.
i had tested positive - via pcr (an unknown lab) after over a year of bart treatment...(still had several symptoms )


I do know someone - that I email with and she is in remission - had bart.
Treated for 2 1/2 years (lyme and bart) and has been in remission for a couple years now.

Edit: Another person I talked to in my area had lyme and suspected Bart... but caught it after several months (not years) and she treated without rifampin - treated for months (not years) and has been in remission for over 4 years now.
Posted 9/14/2018 5:23 PM (GMT 0)
based on our shared internal chills/tingling i think we both either have bart and/or nerve damage....was hoping that maybe the nerve damage would improve (as idsa drs talk about w post lyme syndrome nonsense). hasnt happened
Posted 9/14/2018 5:32 PM (GMT 0)

dbwilco said...
based on our shared internal chills/tingling i think we both either have bart and/or nerve damage....was hoping that maybe the nerve damage would improve (as idsa drs talk about w post lyme syndrome nonsense). hasnt happened

thing is - I wish I had been given babesia treatment in 2016.....but my LLND never prescribed it...come to find out that he can't prescribe mepron or malarone...so I now wonder if he was 'dodging' babs treatment..but he could have given me clindamycine and quinine...but I think the quinine is harsh.

I did 'react' to the mepron...not sure how much was side effects vs herxing.

But, getting it out of the way relieves some of my anxiety/concern that I wasn't addressing one of the infections.
Sometimes babesia can be asymptomatic (Horowitz has talked about it) - but I did have some symptoms that could be attributed to babs: the pulsatile tinnitus, sweating, some head pressure)


FYI - I haven't posted about this yet...but the past two mornings I have not had the shivering when I wake up in the morning.
And...the weather has started to turn...not as warm in our house...maybe speaking too soon...but I was expecting it to ramp up those shivers I get.
Also the anxiety hasn't happened these past two mornings either.

Well...now I've jinxed it.....lol.
Posted 9/14/2018 5:32 PM (GMT 0)

dbwilco said...
i guess the overall question is has anyone ever cured bart, and if so, how??

Riffy zith was rough ....but 9 months zhangs hh2 and allicin with bvt and daily rife left no quarter for bart to hide. I still have bart but its not damaging nerves
Posted 9/14/2018 5:34 PM (GMT 0)

bluelyme said...

dbwilco said...
i guess the overall question is has anyone ever cured bart, and if so, how??

Riffy zith was rough ....but 9 months zhangs hh2 and allicin with bvt and daily rife left no quarter for bart to hide. I still have bart but its not damaging nerves

blue - you still have bart? What symptoms are left?

Are you hoping the bvt will get rid of it?
Posted 9/14/2018 6:09 PM (GMT 0)

dbwilco said...
yep, we talked about this...he is an outlier in that regard...he believes most babs reported symptoms are in fact bart....he eventually adds other things like alinia and other anti parasites abx...not that it matters, but i tested quest positive for babs igg, and igm...after 2 21 days, no longer igm positive...like testing matters

Again, thanks for sharing. I'm always interested in what the experts think and say, as I can't afford to see one.

"he believes most babs reported symptoms are in fact bart"
- I've often wondered if this is the case.
Posted 9/14/2018 6:16 PM (GMT 0)
Girlie, I sure hope your shrivers are gone and stay away, that would mean the dapsone is helping right/

Praying for you. Take care.
Posted 9/14/2018 7:03 PM (GMT 0)
just for clarification, he believes that babs causes symptoms but doesnt think it lingers after treatment...talks about malaria in one of his videos, and how there is no herx to it....i dont really know if hes right.... i dont get sweats since i treated for babs for just 2 months but i do get chills...asked him, and he said bart causes chills....he was one of, if not the first ilads president....you can find papers that he co-authored w/ horowitz, burrascano and the others on babs back in the late 90s....he and dana parish are writing a book by the way...he really feels bart is behind alot...and it is unknown outside of llmds really...cdc types still havent admitted it can be spread by ticks....the thing is both dr j and Sp have been at this longer than anyone i think, and they both get ppl well, so...
Posted 9/14/2018 7:06 PM (GMT 0)

goshawk said...
Girlie, I sure hope your shrivers are gone and stay away, that would mean the dapsone is helping right/

Praying for you. Take care.

Thanks <3

Well I think it’s one of five things:

1) dapsone/pyramethamine is working

2) the Alinia is working

3).The Rifabutin is working on bart bcuz I got rid of Babesia.

4) The Babs treatment I finished in July is working

5) My nerves are finally healing

Lol
Posted 9/14/2018 7:18 PM (GMT 0)
From what I know of bart, it's an opportunistic infection. Your immune system should take care of it. Unfortunately, with all these other infections, bar is left to wreak havoc. I believe babs should be addressed first, then lyme, and once those have been addressed properly, strengthen immune system, and bart should be suppressed.
Posted 9/14/2018 8:02 PM (GMT 0)

Hoagie said...
From what I know of bart, it's an opportunistic infection. Your immune system should take care of it. Unfortunately, with all these other infections, bar is left to wreak havoc. I believe babs should be addressed first, then lyme, and once those have been addressed properly, strengthen immune system, and bart should be suppressed.

Yes Bart is self limiting in healthy people.

I’m not sure that once you treat Babs and lyme that you’ll be able to suppress bart at that point - after its had all that time to run amok and cause degradation in our body.
Posted 9/14/2018 8:59 PM (GMT 0)

dbwilco said...
just for clarification, he believes that babs causes symptoms but doesnt think it lingers after treatment...talks about malaria in one of his videos, and how there is no herx to it....i dont really know if hes right.... i dont get sweats since i treated for babs for just 2 months but i do get chills...asked him, and he said bart causes chills....he was one of, if not the first ilads president....you can find papers that he co-authored w/ horowitz, burrascano and the others on babs back in the late 90s....he and dana parish are writing a book by the way...he really feels bart is behind alot...and it is unknown outside of llmds really...cdc types still havent admitted it can be spread by ticks....the thing is both dr j and Sp have been at this longer than anyone i think, and they both get ppl well, so...

I'm thinking Dr. J has been treating lyme for about 15 years or so? (He was treating HIV/Aids prior to lyme and reports to have diagnosed one of the first HIV/Aids case in North Carolina in 1983.}

I would think Dr. H has treated close to that, too?
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