People's experiences of Bartonella

Erica.N

Erica.N

Messages
8
@xrunner
Hello How is your treatment for bartonella with dr kaufman? I have consultation with him in April 2017, I have many neurological symptoms, many body aches, burns etc. I wonder if you're enjoying treating Dr. Kaufmam? I'm traveling from another country to see it and I'm going to do several tests to investigate what I have. My question is... should I look for an LLMD or if Dr Kaufmam can help. what do you think?
 
C

ChrisD

Senior Member
Messages
491
Location
East Sussex
Hi @xrunner , I started feeling ill after a trip in North Spain - had lots of psychological issues like Insomnia/depression/anxiety in 2014 before noticing a striation/stretch mark rash in late summer 2015 but ignoring it as I thought it could genuinely be stretch marks around my hips. In December 2015 I was stressed annd my immunity was low and I contracted what I thought was a common cold (but it could have been anything), suddenly I had reactive arthritis which evolved into Fibro, I have had Costochondritis, Plantar fascilitis, TMJ, Trigeminal neuralgia, hair loss.

My doctor diagnosed me with ME/CFS, but I have recently had a Lyme test (results not back yet annd only ELISA), but I have a strong suspicion now that I have a BArtonella co-infection due to the way my symptoms present compared to the people in my CFS group. I do have quite debilitating fatigue now but also a lot more pain and bbizarre muscle issues like cracking and popping etc. and the above symptoms.

Anyway, I don't have the first clue about how to get a Bart test so any info would be much appreciated...
 
X

xrunner

Senior Member
Messages
843
Location
Surrey
Hi @ChrisD,
For testing I'd go to a specialist with cinical experience in treating Lyme. There's a huge difference between a doctor who treats say two cases a year vs. two per week. If you live in the UK that means going private.
However, at present, I don't know of any UK Lyme specialist I could recommend, also the past few years I've been well enough not to bother keeping up to date with Lyme-related information, doctors, forums etc.
From memory may be you could ask @Valentijn or @justy or @Sushi they should be much more up to date with info regarding Lyme testing etc
The only thing I'd say is that I'd not restrict testing to Bartonella but to all possible bacteria connected to Lyme disease.
Sorry if this is not very helpful.
 
justy

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
@ChrisD you can get Bart testing through Arminlabs in Germany from the UK. I agree with x runner tht a general Lyme and co infections panel might be a good idea. Bart is notoriously hard to test for, you may need to repeat the test a number of times. There is a great video on bart by a top Vet who talks about Bart in humans - its posted in the lyme and co infections forum somewhere and he discusses testing issues- its well worth a look
 
CedarHome

CedarHome

Senior Member
Messages
131
deleder2k said:
Has anyone seen this? Claims to have a 100% specificity. "References available upon request". What is this? BS?

http://www.galaxydx.com/web/pdfs/HHTestPerformance.pdf


Here is the "team" at Galaxy: http://www.galaxydx.com/web/our-team/

Seems like the Chief Scientific Officer has a few articles published:

https://cvm.ncsu.edu/directory/breitschwerdt-ed/

But is this just a big scam?
Click to expand...

Don't know but I just got 2 positive results back from them (after prior negatives other places).
 
CedarHome

CedarHome

Senior Member
Messages
131
I have the same symptoms, but can't tell which are Bartonella, which are Borrelia, which are chlamydia pneumonia and which are EBV or maybe HHV-6
;):confused:
But the burning soles of feet in the morning when I was acutely ill let me to suspect Bartonella. Nice to have confirmation, I guess.
 
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duncan

Senior Member
Messages
2,240
CedarHome said:
I have the same symptoms, but can't tell which are Bartonella, which are Borrelia, which are chlamydia pneumonia and which are EBV or maybe HHV-6
;):confused:
But the burning soles of feet in the morning when I was acutely ill let me to suspect Bartonella. Nice to have confirmation, I guess.
Click to expand...

I am in most respects a treatment failure. But one of my symptoms that I attributed to Bartonella (I have tested positive to Bartonella antibodies a few times) was bad feet pain. This pain was worst in the morning, but it was problematic throughout the day. I had a podiatrist who said it was plantar faciitis; he was not familiar with Bartonella. I knew the sole pain could be characteristic of Bart, but I did not know who was right.

I went on a treatment protocol for Bartonella, and after a few months I got rid of the foot pain. I had other symptoms that persist, but my feet improved. My sister, who has a history of tick bites yet refuses to be tested, also has bad sole pain, and also has been diagnosed with plantar faciiitis. She never went on a Bartonella protocol, and she still struggles with her foot pain; she has had that pain for years.

So, eh, correlation does not equal causation, but I never let her forget that I am the one that right now can stand in the morning without crying out.
 
TrialAndError

TrialAndError

Messages
47
sianrecovery said:
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.
Click to expand...

In the latest news or science in lymedisease.org (an org that censors comments and posts that are apprently not pro-pharma, imo) Bartonella is said to be more prevalent than any of the Lyme and its co-infections.
 
TrialAndError

TrialAndError

Messages
47
sianrecovery said:
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.
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A year of Doxy? Wow, there's lots of bad side effects with Doxy.

Also, look up the correct dosing, per Will Wiegmann PhD and the Johns Hopkins Lyme site -- it differs vastly from the standard 200 mg /daily.
 
TrialAndError

TrialAndError

Messages
47
sarah darwins said:
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?
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I did the googling, too, and concluded that Doxy doesn't work. Look up the in vitro work, the latest. Doxy by itself won't even kill Lyme.

Bart hides inside the blood cells and is 1/300 the size iirc of the Lyme pathogen.

Let's all try to search for The Cure for Bart. Here's a typical search term:

https://ca.search.yahoo.com/yhs/sea...ca.search&hspart=mozilla&hsimp=yhs-001&csel=1
 
TrialAndError

TrialAndError

Messages
47
sarah darwins said:
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.
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Have you read that most cats have Bart? Read somewhere to NEVER have a cat on your head.

Fleas and other anthropods, even insects, can transfer Lyme and co-infections to humans.

Cat saliva has Bart. Transferable, apparently.
 
TrialAndError

TrialAndError

Messages
47
duncan said:
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.
Click to expand...


Imo IDSA isn't science-based. Lookup Wormser, he was "run out of town" .. latest news, LymeDisease.org
 
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