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People's experiences of Bartonella

Discussion in 'Lyme Disease and Co-Infections' started by sianrecovery, May 24, 2016.

  1. sianrecovery

    sianrecovery Senior Member

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    Hi guys

    Hope you are all OK. I've been treating babesia duncani and microti (Ingenx test)with atovoquone and azith and artemisin for the past seven months. My LLMD suggested I now do the Galaxy bart test, as so many of her patients are turning it up. I cant afford it. She suggests treating it on the basis of my clinical history, with clarithromycin and rifampin. I was negative for it on the Ingenx test, but she considers that pretty uninformative in terms of bart.

    Does anyone have any useful experience on this one?

    Thanks in advance for your responses,

    Sian
     
  2. Valentijn

    Valentijn Senior Member

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    Did you get the funny bartonella markings on your skin? Or other symptoms?

    Conventional bartonella testing has an 80% false negative rate. So if you are infected, you'd need to be tested an average of 5 times for a test to show that. So she's right that a negative result doesn't mean anything.
     
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  3. sianrecovery

    sianrecovery Senior Member

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    I have some striations, and on examination, she though enough to be significant. To me, they just look like stretch marks. I guess I should have just found the money for the Galaxy test. Thanks for your response Valentjin, hope you are OK.
     
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  4. duncan

    duncan Senior Member

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    I have tested positive for Bart for about two years. I think I had the marks, but kinda hard to tell. I have feet pain, but I had a podiatrist diagnose that as plantar faciitis - the podiatrist had never heard of Bartonella. :)

    Sooooo, most other symptoms parallel Lyme symptoms. I think many doctors hope to kill two birds with one stone wen they treat for Lyme. But that would not apply to you, as your treatment was for babs.

    Anyway, I was treated for Bart for two months recently with doxy and rifampin.

    It didn't help me. Then again, maybe my positive was from an old infection, and my symptoms are ME/CFS, so may not be applicable to your situation, @sianrecovery .

    Bart has a reputation in some circles of chronicity. I went off rifampin and doxy to start an IV Roceph regimen for Bb, or else I'd still be taking at least the rifampin. Come to think of it, I'm wondering if I shouldn't insist on the rifampin anyways considering I just tested positive AGAIN for Bart last month...

    I hope this helps you somehow.
     
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  5. sianrecovery

    sianrecovery Senior Member

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    thanks Duncan, your insights always help me. If you test positive for Bart, I guess that really DOES mean something, as so few people manage to. I've had flea bites, cat scratches, lived with cats etc. Sound like yet another swamp to navigate.
     
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  6. duncan

    duncan Senior Member

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    There is merit to treating symptoms, since testing is reputed to be so bad.

    Works both ways, too. I test positive off and on for Babs, but am not symptomatic for it, so my treating doctor advises to just let sleeping dogs lie and not to treat, and I have agreed.

    So, perhaps you consider trying Barts treatment and seeing if some symptoms abate?
     
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  7. sianrecovery

    sianrecovery Senior Member

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    I think I would find it hard to know if my symptoms are bart or not - I don't have the classic burning feet thing - I just feel exhausted, malaised and poisoned. I do have sensitivity to sound, light and smell - but then, autonomic over-arousal is not uncommon among us...
    The LLMD says nearly all of her patients have ultimately proved to improve with or test positive for bart - she sees it as ubiquitous. I am positive for borrelia on ingenx.
    Maybe a trial to see if the symptoms improve. She says the first six months can be pretty tough. I didn't enjoy the atovoquone/azith journey too much either. Feel like I'm punching in the dark.
     
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  8. duncan

    duncan Senior Member

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    Yes, the poisoned feeling. I'm sorry, I hate to say this, but I am always brightened a bit when I talk to someone who shares that sensation. How do you explain it to someone who has never experienced it without sounding just a little daft? I have it a lot. A lot.

    Symptoms are a moving target, and they shift and change. New ones, old ones. It's a script that is always in re-write.

    Punching in the dark is what we do.
     
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  9. sianrecovery

    sianrecovery Senior Member

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    Eloquently put! yes, the poisoned symptom has provoked a raised eyebrow in many doctors over the years. I'm not glad at all that you experience it, but I am very glad for your identification.

    Thanks for response - you've a bit of fight back in me. Hope you have a good day ahead of you xx
     
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  10. aquariusgirl

    aquariusgirl Senior Member

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    Sian : do you feel any better for your treatment?
     
  11. Sushi

    Sushi Moderation Resource Albuquerque

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    I tested positive for Bart by PCR and took rifampin for many months. I didn't feel better and one of its side effects is lowering cortisol--which it did--way too low. But that is just my story.
     
  12. justy

    justy Donate Advocate Demonstrate

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    Hi, Sian - I tested low positive for Bart, which my Dr took as a positive. I don't remember any significant marks, but I have stretch marks, but then I have had 4 children...anyway I have the heel/foot pain, not necessarily burning, but pain. I also have had a lot of psychiatric symptoms in the past - anxiety, agoraphobia, OCD, and borderline psychosis a couple of times.

    I know the psych symptoms can be quite prominent with Bart. I also (Hello @duncan ) have the poisoned feeling a lot very strongly.

    I tried Rifampicin and went totally nuts - off my head mental. My husband said I was saying I wanted to kill myself but I don't remember that. I just remember that the first day I was OK, but by the second/third I couldn't deal with reality at all. After 5 days I had to stop because my GP felt I was at risk and I agreed. When I stopped the psych symptoms went away and I was OK again.

    This is quite a common experience among people I have spoken to in a Lyme FB group I belong to. Some people find it a really crazy ride. In a way I wish I had carried on - but I was so sick the extra mental stuff was making me so vulnerable I had to stop.

    I was around cats and fleas a lot as a child/teen. We used to get cat fleas in the bed a lot and I would sometimes get up in the night, pull the covers back and try and catch the bastards with a bar of soap because I couldn't sleep. If that didn't work I would get out the flea spray - spray my bed and then get in it it!!! Oh my god, the 70's! no wonder I don't feel well now.
     
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  13. sarah darwins

    sarah darwins I told you I was ill

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    Weird that this should come up now because I've just started wondering if I'm another bart victim. I've had a lot of weird rashes for years but just lately I've noticed some really pronounced, scratch-like marks on my legs. They're easiest to see after a bath when they become quite vivid. They look for all the world like cat scratches but definitely aren't. We do have cats, and I've always been around them, and like Justy I've been a bit of a flea magnet all my life (as well as anything else that bites). I've also had some of the psych symptoms Justy mentions.

    I was recently on clindamycin for something else and I'm wondering if this could have woken up a bart infection. I tested negative for it last year but I hadn't realised the false negative rate was so high. I'll be mentioning it to my doc when I see him soon.
     
    Last edited: May 24, 2016
  14. duncan

    duncan Senior Member

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    Some people believe Bartonella is a much larger problem - both in terms of prevalence and chronic nature - than is generally thought.

    I figured my "cat scratches" might be Bart because they weren't scabbed. They do look like colored stretch marks.

    Anyway, I was under the impression that treatment for Bart was a slam-dunk, but as with Lyme, my research and experience is suggesting maybe not so much.
     
  15. sarah darwins

    sarah darwins I told you I was ill

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    I was doing a bit of Googling on bartonella and the most commonly mentioned antibiotic is doxycycline. Is there a reason for using rifampin instead of this?
     
  16. duncan

    duncan Senior Member

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    @sarah darwins , I am sure there is a reason for rifampin's popularity for Bart, but I do not remember it. I usually see it offered for Bart in conjunction with another abx. I wanted mino and rifampin, but I got doxy and rifampin instead.

    Lyme stuff I remember. Bart and babs - forget about it.

    But I DO seem to remember rifampin is a go-to for Bartonella for many LLMDs. I just cannot recall why....

    So please do your due diligence and not take my word for it. Besides, rifampin and doxy didn't help me.
     
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  17. duncan

    duncan Senior Member

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    I am trying to track down all of my Bartonella research. Easier said than done. Lot's of it deals with diagnostics. Not a whole lot about treatment.

    Supposedly, according to my notes, doxy and rifampin are recommended for those in whom Bartonella is suspected of having infected the central nervous system; but I'm having trouble sourcing that. For those immunocompromised, treatment may be indefinite, but most people with normal immune situations are supposed to respond well.( A problem is so many of us get Barts WITH something else, like Lyme. Another is many of these researchers still think you can't get Bart from ticks, so what do they know...) Treatment challenges may arise because Bartonella can be intracellular and it has an affinity for endothelial cells. But I don't trust my notes. I'm going to track down my IDSA Guidelines (if I can) to verify.

    The link below discusses treatment possibilities for Bartonella. Rifampin is discussed in a couple of places.

    http://aac.asm.org/content/48/6/1921


    Another link:
    https://www.lymedisease.org/bartonella/

    It may be worthwhile checking out Burrascano's Guidelines as well. Also, check out the forum Lymenet Flash - it deals a lot with treatments, many of which are alternative, but most ILADS-compliant, I think. FYI, Lymenet Flash is pretty anti-IDSA.

    ETA: The IDSA Lyme Guidelines apparently don't address Bartonella since the IDSA, I guess, still doesn't acknowledge ticks as being a Bart vector.
     
    Last edited: May 24, 2016
  18. sianrecovery

    sianrecovery Senior Member

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    Thank you so much for your responses guys, uber helpful. I'm feeling pretty cautious about an antibiotic that might lower my cortisol or provoke psychosis. I do have a high level of ambient anxiety etc - part of the profile that makes her suggest treating it.

    I did a year on doxy with Dr Fry for his 'protomxzoa' - I saw substantial improvements on it, but they were not sustained.

    There are a number of antibiotics that I can reliably predict will make me feel worse, then transiently much better - one of the reasons I have been pursuing the infectious disease angle.

    I feel no better for my time on mepron/azithromycin - I feel worse.
     
    Last edited: May 24, 2016
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  19. sarah darwins

    sarah darwins I told you I was ill

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    Do you mean you did better while on it then fell back when you stopped, Sian? @sianrecovery Is it possible you just needed more even more time on it?
     
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  20. sarah darwins

    sarah darwins I told you I was ill

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    @duncan - Thank you! Lots of reading to do .....
     
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