Bartonella

Hi , my name is jami , I am being treated for Lyme and bartonella , and I am thinking I am having a herx . I have a lot of questions and I am scared to death . I see a np who is specialized in Lyme and co infections and very knowledgeable, and she practiced under dr Horowitz . I had Lyme 19 years ago . And I was misdiagnosed back then as well as this time again . I found a llmd 19 years ago and treated me for a year . After 3 years of hell and research and bedbound and literally was so so sick . Then better . Hardly any symptoms . For many many years . Then in 2019 . I had a trauma accur . And I was feeling very sick again , fyi I rescued a feral cat and she bit me and scratched me a lot . And she was so sick I had to put her down 😢. I had never had a cat before . And had no idea . She was so so sick . Until. The end . I had a pjs like blister next to the bite but I didn’t think about bartinella ? I continued to be sick . And I was put on ssri and benzos for anxiety , multiple hospital visits and er again . Like years ago . And I had to go through horrific. Withdrawels from all the meds they put me on saying I had anxiety and it was in my head . I had to withdraw and eveyone was saying it’s just medication wds ! Well my tests were negative . My reg western blots and my reg bartinella . So I didn’t know ? So I checked w igenex a few months ago and it said possitive for Bart . A fish test . And I only had one igm band 23 . Nothing else ? So now I am on Prozac still and want off but have to taper so so slow . So I can’t take charcoal binders because it pulls the ssri out of me ? I am taking now 3 days so far . Biaxin , and nyastatin , chlorriela , burber panella , core dandi blend . I can’t take tox ease , so I am going in my sauna , ? Then next week rifampin , added . And she wanted to start meth blue but because of this ssri I can’t take it due to seratonin syndrome .😢. Then some kind of halluila herb . I am having burning , and anxiety , and aches and pains and crying a lot . And I have sweats and head pain , and nerve pain in my teeth that I have had for so long . And nerve pain joints and something called Pgad ? Has anyone had any kind of nerve issues in there genitals ? It’s tingly and throbbing . The nerves . I’m very scared any help and support I would be so grateful. I am 46 , always was active . No health issues before and now been bed bound mostly home bound . From coming off meds and having these infections . Thank you 🙏

Hey Jami,

Welcome to the forum. Don't worry about the polls, it's no problem 🙂. For next time, you can uncheck the "Post a poll with your forum post" option, if it's ever selected by accident

I'm sorry to hear about your herx. Please know, there is no need to be scared, but I do understand how you feel.

It sounds like you're seeing a great LLMD! I would advice you to continue seeing her and to follow her advice. A lot of people don't know about cats and bartonella, so please don't beat yourself up over it.

In regards to the charcoal binders, they are indeed known to pull other medications out of your body. Some doctors will recommend to take it at a different time of the day, as far away from your other medication as possible.

When you write "halluila", I think you're referring to houttuynia. It's a great herb for Bartonella! Are you currently taking it?

I'm also sorry to hear that you're crying a lot, this disease can be very overwhelming indeed. Try your best to stay calm and please know that this disease can be overcome.

I did a quick search for "Pgad" is this persistent genital arousal disorder by any chance?

A lot of us are home bound so please know that you're not alone.
Stay strong my friend!

And thank you again . My mom is sick to death of hearing me cry and it’s been a long road here . And having a sister who got stage 4 cancer . Years ago . Mom is besides herself . But so supportive . Be well also . Is it ok if I have questions through out this process to ask . Is this a support forum for advice and help .? I need it 🙏❤️‍🩹

Jamistarr, welcome to the forum! This absolutely is a good place to ask questions.

A good LLMD should be able to treat you and keep you on your SSRI if it's providing benefit for you. There are plenty of things to take that don't interfere with SSRIs. You mention frequent crying, trauma, and stressful things going on, so weaning off of an antidepressant right now might be destabilizing. If you don't want to take it anymore, then I understand, but I wanted to reassure you that you can treat infections and recover successfully while still taking an SSRI. Some people even get better more quickly that way.

As other have said, your increased symptoms while starting new hard-hitting antimicrobials is to be expected. That said, if your symptoms are intolerable, then you should let your LLMD know that you need to slow down and reduce dosages. You are the boss here. This is a slow and steady process, and there is zero benefit to rushing and pushing through herxes that are miserable when you are already bedbound. Starting with subclinical dosing, and even just one drop of an herb, is absolutely a valid way to begin. Many of us have had to do that.

Please be assured that this uptick in symptoms is temporary, and hang in there! Some days can be so, so hard, and some symptoms can be so unnerving! But you will find a path through this again.

Sorry , have another question . Lol , I just read that u take meth blue . And other things for ure thyroid . My thyroid ana says I have hashimotos. But 4 diff endo drs said my levels are all fine . So does that mean no treatment ? That’s what they say … can Lyme and co infevtions make thyroid bad ? Also my np wasn’t to put me on ldn , but I was afraid because what if I need a pain med? Or soenthing . U can’t take anything off on that ? And is there withdrawels from that . I am hoping I can take meth blue on a few months when off the Prozac . Do u know anyone that takes meth blue that’s on an sssri ? Thank you

Hi Jamistarr,

“Benzos and then gabbapentin and the phyc dr put me on Prozac and zyprexa caiuse they didn’t believe me I was so sick . I’m sure so many have had the same traumatic experience. They all blamed it all on long term withdrawals.”

I’m so sorry to hear that you’re going through such a rough time…And I know that you’re probably figuring out that some of these pharmaceutical drugs are causing some of your problems.

In particular just look at the drug Gabapentin and it’s side effects…my father was on that drug after he suffered a stroke and he had such bad dementia we thought we were going to have to put him in a nursing home….And then when taken off of that drug he got so much better. It was like night and day. A nurse told us that she sees a lot of bad side effects from that drug.

I’m praying for wisdom for you and your dr…And for you to feel better soon and that you get past these terrible symptoms.❤️🙏🏻

Ok . Thank you for the info ? So question . If all my t3 t4 and free t3 and all the tests I had all show normal levels . How does a person know if they need treatment for it ? Because all the drs won’t treat me for thyrod cause I don’t have abnormal numbers ? It’s scaring me that I feel that drs don’t know how to test things ? And how does one know what to do ? Do u think I would require meds for hashi , if I don’t have abnormal numbers ? So confused . Thank u 🙏

I have a question , so how will I know if I need treatment for thyroid if can’t base in tests ? It’s so scary to me that seems as if nothing is diagnosed properly. ? Most have abnormal numbers ? High or low . So it’s very confusing having bartinella and not knowing what’s what . I do belive that I am suffering long term affects to having to come of many meds , due to misdiagnosis of my tick born illness . So symtoms tend to over lap . It’s very frustrating. Thanks for ure comments . And responding to me .
Best ,
Jami

Jamistarr said...
Hello Bartinella warriors,
Can someone please help me . I’m scared . I’m rocking in my bed . I took the biaxin and the rifampin about 4 hours ago or more and I am all of a sudden having really scary symptoms. I am having severe muscle aches and tightness in my whole body and my throat tight . The muscle in my throat . Are so tight it’s hard to swallow . And my ears are ringing and I have migraine and nausea. And sweats and chills . I don’t know if this is a herx . I have been having the Pgad symtoms for so long . That’s the genital thing . But I think that’s from coming off phyc meds that I never should have been on and the brain and cns trying to balance while I have this infection in my body . The fish test for Bart the igenex test is shows active infection . Is that really the way this works w this test . Not antibodies. But active when the fish is possitive : I have had this for almost 4 years . But I tried w one dr llmd to treat all but I had to stop because of the bind withdrawal from those meds and not knowing what was what . And I’m 10 months off benzos and I am 6 months off zyprexa . Yes . These crazy drs put me on these meds for anxiety when I never had anxiety before my cat bite . And scratched . And she was feral I rescued . So stupid but my heart was in the right place . And eveyone tells me my cns is messed up from meds . So that’s prob what it is . But now that I’m treating this I am getting so much worse again . I have to go in my sauna cause I can’t take binders . Taking burber p , and houtunnya and a few o thee things . Does this sound like a herx . I’m afraid I been reading some people have to be treated for many years and o don’t know if I can hold on much longer w this . Please any advice would help . 🙏

Yes, it does sound like a herx.
Don’t hesitate to go to the emergency room at the hospital… and they can monitor you there.

Does a Bartonella die-off generate a herx effect?? I've read numerous articles stating that this does not happen, unlike Bb. Any insight ?

RobWireGuy said...
Does a Bartonella die-off generate a herx effect?? I've read numerous articles stating that this does not happen, unlike Bb. Any insight ?

hi Rob,
i have looked into this a little in the past and will share what i found

my understanding is that the research in this area is incomplete - and gaps in our understanding may have been filled by assumptions - and then the resulting theories reported as fact

firstly the actual cause of herx reactions - especially the ones that chronic lyme sufferers experience lasting from several days to a week or more are not well understood

they differ from the typical herx reaction originally characterised from treating syphilis patients - which occur within hours of initiating antimicrobial treatment and resolve within 24hrs - often much sooner - just a few hours.

in general herx reactions are often assumed to be caused by exposure of lipopolysaccharide from the dead bodies of killed gram negative bacteria triggering an inflammatory immune response -
i think LPS was singled out as its the best known highly immunogenetic compound shared by many bacteria

i think Buhner may have written in his bartonella book that bartonella does not produce Lipopolysaccharide or very little - and therefore if a person is "herxing" - it cannot be due to bartonella die off

in fact there is research which shows bartonella does indeed produce lipopolysaccharide

but the research indicates that bartonella LPS actually blocks normal inflammatory responses ( this is likely an evolutionary adaptation to allow the bacteria to survive in the blood of its host long term - as any bacterial infection in the blood is normally associated with very high fevers - something bartonella especially chronic bartonella is not known for)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2044526/

however - research is incomplete

there are many potential substances and mechanisms inside bacteria that can trigger an immune response - not only LPS

borrelia for instance have lipoproteins that make up their outer membrane and these have been found to be 50x more inflammatory than typical LPS

it may not even be the the LPS or Lipoproteins from dead bacteria that drive the main herx response

in fact
some later research shows that white blood cells that engulf damaged and dying bacteria caused by antibiotics - can go on to produce extremely high levels of inflammatory compounds for days after ingesting the live bacteria - and this is a good candidate for long lasting herx reactions

thus
bartonella may indeed drive powerful herx reactions by some of these other mechanisms

certainly - we often see severe herx reactions reported in people with bartonella in their system
but its also true that most people who become chronically ill seem to have more than a single infection
so it may be difficult to isolate which infection is driving which reaction

i hope its of some help

MyJourney101 said...
Hi Jamistarr,

“Benzos and then gabbapentin and the phyc dr put me on Prozac and zyprexa caiuse they didn’t believe me I was so sick . I’m sure so many have had the same traumatic experience. They all blamed it all on long term withdrawals.”
Hi . My journey101 . Could I be having withdrawels from gabbapentin after taking it for 3 weeks . Started on 300 and then tapered down to 100 mlg . And stopped 4 days ago . And not sure if I’m herxing or if the gabbap can do this ? It’s so hard to tell . But I’m rocking and crawling out of my skin and burning . And anxiety . And it happened 4 days after I stopped this med . 😢sorry I know this isn’t a med group . I’m just so confused here .
I’m so sorry to hear that you’re going through such a rough time…And I know that you’re probably figuring out that some of these pharmaceutical drugs are causing some of your problems.

In particular just look at the drug Gabapentin and it’s side effects…my father was on that drug after he suffered a stroke and he had such bad dementia we thought we were going to have to put him in a nursing home….And then when taken off of that drug he got so much better. It was like night and day. A nurse told us that she sees a lot of bad side effects from that drug.

I’m praying for wisdom for you and your dr…And for you to feel better soon and that you get past these terrible symptoms.❤️🙏🏻

Thank u . For responding to me . It did start when I stared the rifampin . 4 days ago . I added it to my biaxin . W some herbs . And I stopped the gabbap at same time was so stupid . But I took it for 3 weeks . Cause I had this nerve issue vaginally . Still don’t know if that’s from having bartinella ? But withdrawels mimic the disease . But I don’t want to stop taking the antibiotics. And start all over again . Can this herx subside soon ? Or will it last for so long ? It’s so scary . I was having a bit of herx when started the biaxin and now this w the rifampin . Feels like u can’t catch breath and so achy and anxious. And buzzing and insomnia . This is awful . Will I get better . I don’t know how much of this I can take : 😢it was 4 years undiagnosed properly and now I’m scared it’s too late ? I’m trying to be possitive but it’s so hard when these symtoms get like this and never know why . I guess if it’s Bart . Then it has to pass . If it’s wd then has to pass anyway . But I did have these symtoms before the gabbapentin . And before I had started w any of these medications . I had no business being on phyc meds . Never had a phyc issue in my life other then this . And 19 years ago having Lyme . And same thing happened to me . Back then . Ok . This is awful . I appreciate u 🙏❤️‍🩹