People's experiences of Bartonella

[Vitalic]

I've been noticing scratch marks and rashes for a while now (usually a blotchy red bloodshot looking pattern over entire chest area). Do excuse the neck beard hadn't shaved in a couple of days but this is the kind of thing I get, usually on the chest, upper arms or back. No idea what is causing it since I was negative for Bartonella both on serology/PCR, I wonder if there is a more conventional explanation for this phenomenon? Perhaps it could be some allergy related thing.

 

[sianrecovery]

@Sarah Dawkins

I felt better on doxy, lost the improvement when I stopped. Dr Fry hadn't said doxy alone would work - but when I tried adding plaquenil as per instructions I ended up in the emergency room, severe inflammatory response.

I wonder about people's scratch-type marks - mine are silvery, but the LLMD said they could be either silvery or red. Is not the Bart serology/PCR the test people are saying is largely useless?

 

[sianrecovery]

Spent a night reading through what research I could find online. Oh dear. Another disease with no real evidence base apart from anecdotal and clinical perspectives - makes a change. Not.

 

[sarah darwins]

@Sarah Dawkins

I felt better on doxy, lost the improvement when I stopped. Dr Fry hadn't said doxy alone would work - but when I tried adding plaquenil as per instructions I ended up in the emergency room, severe inflammatory response.

I wonder about people's scratch-type marks - mine are silvery, but the LLMD said they could be either silvery or red. Is not the Bart serology/PCR the test people are saying is largely useless?

I'm not a Dawkins, so I think you just tagged another Sarah!

Eek to the plaquenil response. Glad you survived.

And yes, it's depressing when you're pretty sure you have an illness which is not yet at all well researched. We have to take a lot on trust from the doctors willing to treat us, but I suppose we're here because we feel that's better than the alternative. I'm not prepared to just lie around waiting for someone to figure this stuff out.

 

[sianrecovery]

Yes, totally, never been a fan of leaving it to chance. Infectious disease is an area of activity for me, so will be continuing to deal with my mould issues, and I guess in the end I'll work my way back round to heavy metals. Whatever helps support the 'terrain', along with reducing the numbers of hostile microbes. But not incautiously - experts fall in love with their chosen method, and stop seeing the flaws or costs.
My LLMD says her bart patients often have issues with nerve pain, especially after dental work - I have a big problem with facial nerve pain, after a bone infection in my jaw, and its a deeply life-sapping experience. I may try the antibiotic regime she suggests to see if it reduces the amount of pain I'm in.

 

[Hutan]

I found this very interesting, a vet's view of Bartonella. The presenter was invited out from North Carolina to speak at the University of Sydney (Australia). (The introduction runs through to the 6 minute mark).

Published on Sep 10, 2014
Ian Beveridge Memorial Lecture 2014 by Professor Ed Breitschwerdt, DVM, is Professor of Medicine and Infectious Diseases at the Center for Comparative Medicine and Translational Research, College of Veterinary Medicine North Carolina State University Raleigh, North Carolina, USA.

 

[xrunner]

Does anyone have any useful experience on this one?

Hi @sianrecovery
I treated mine following a positive but dodgy serological test. Never had any red rashes, main symptoms were CNS-related i.e. feeling wired and nerves kind of vibrating esp. through my legs and feet.
Initially, my consultant recommended a course of Levofloxacin but my GP said he could only precribe Ciprofloxacin (cheaper but less effective) so that's how I started.

Cipro started to have a strong positive impact but I had to give up eight nine days into treatment due to sore tendons.
Subsequently I was prescribed a combination of Azthromycin (500mg) Minocycline (100mg bid) and Rifadin (300mg bid), a combination that would also target Borrelia at the same time, according to my consultant.
I got better within a few weeks with CNS symptoms resolving and improving in stamina as well.

If Bartonella is a problem for you, you should be able to see improvements in symptoms fairly rapidly and resolve within four five weeks max.
Best wishes

ps: from experience I'm not sure clarithromycin is a good abx for Lyme.

 

[IreneF]

I've been noticing scratch marks and rashes for a while now (usually a blotchy red bloodshot looking pattern over entire chest area). Do excuse the neck beard hadn't shaved in a couple of days but this is the kind of thing I get, usually on the chest, upper arms or back. No idea what is causing it since I was negative for Bartonella both on serology/PCR, I wonder if there is a more conventional explanation for this phenomenon? Perhaps it could be some allergy related thing.

Maybe you scratch yourself in your sleep? I know I sometimes scratch my leg without being totally conscious of it.

 

[justy]

I found this very interesting, a vet's view of Bartonella. The presenter was invited out from North Carolina to speak at the University of Sydney (Australia). (The introduction runs through to the 6 minute mark).

Published on Sep 10, 2014
Ian Beveridge Memorial Lecture 2014 by Professor Ed Breitschwerdt, DVM, is Professor of Medicine and Infectious Diseases at the Center for Comparative Medicine and Translational Research, College of Veterinary Medicine North Carolina State University Raleigh, North Carolina, USA.

This is a very excellent presentation and has its won thread somewhere..

@sianrecovery - have you watched this - it think this would count as real evidence

 

[Vitalic]

Maybe you scratch yourself in your sleep? I know I sometimes scratch my leg without being totally conscious of it.

That is exactly what I assumed was happening, it was only recently I decided to have a closer look and noticed there was no breach of the skin surface, the redness appears to come from what looks like clusters of inflamed capillaries under the skin, not only that but it seems to be very transient and can fade away within a few hours, also becoming more apparent after being exposed to heat. There are often other smaller patches of the same kind of rash that are not uniform in shape, so I have some doubt that it is self-inflicted although I can't exactly rule it out.

 

[soxfan]

I have been dealing with Bartonella for 9 years now. It even attacked my vocal cord and paralyzed it for two months. The ENT had no idea what was wrong so I finally went to see my Lyme Doctor. He said right away it was Bart and put me on Rifampin and Minoxycline. Within four days I was starting to me able to talk again.

I did test positive through Igenex back in 2007. I was bit again in 2012 and ended up with Lyme again and Bartonella. I was treated but can't get rid of Bart this time. I have been on many combinations so finally decided to try Bryon Whites A-Bart. I had a huge flare up after my second dose.

My symptoms consist of heel pain...cat scratches all over my back....which are red and then scab over....it literally looks like a cat used my back as a scratching post. My husband has taken lots of pictures over the years and my doctor says definitely Bart.

Other symptoms are chronic nerve pain in my calf and foot...burning pain in eyes..chronic tiredness...horrible sleep quality...

If you look online at pictures of Bart rashes there are many different types..they don't necessarily have to look like a stretch mark.

I am done with antibiotics as they never seemed to help much except for the vocal cord....gonna go the herbal route for a bit and see how it works out.

I want to add that unless you have pointed sharp fingernails there is no way you are making those scratch marks on yourself...try to replicate them yourself and it can't be done.

 

[msf]

Wow, Soxfan, how did you manage to convince yourself you have the tell-tale signs of Bartonella, and that you have had a positive test result for it?*

* Sarcasm

Really sorry to hear how horrible it is, I didn´t realise it could cause paralysis-like symptoms.

 

[tinacarroll27]

I am beginning to wonder if I have bartonella. I grew up around cats and we regularly got flees in the house and I was always getting bitten by flees. Also I shared a house with a girls who had a cat and her cat was always getting flees and the last time I was bitten was 2012 and not longer after that I had a relapse of ME. I need to get tested I think!!

 

[soxfan]

@msf.....Bartonella sucks....I managed to get rid of Lyme with IV Rocephin but just can't seem to rid myself of Bart. I can keep the symptoms under control somewhat if I keep myself unstressed but that is impossible since I have moved three times in less than three years.

Yeah Bart can cause all kinds of weird stuff...my vocal cord started out as sudden hoarseness and progressed to total paralyzation. It was pretty hard trying to communicate with customers during those seven weeks.

I even had an MRI with contrast and that's how they discovered it was paralyzed.

 

[valentinelynx]

If Bartonella is a problem for you, you should be able to see improvements in symptoms fairly rapidly and resolve within four five weeks max.

Where do you get this from? I'm just starting IV antibiotic (ceftriaxone to start) treatment for Bartonella, having been on orals (minocycline and metronidazole for 2+ years, and rifampin for 3 months. Got a + IFA for Bartonella finally in June (after a negative titer in January) from Galaxy Diagnostics (Dr Breitschwerdt helped set up this lab, which focuses on testing for Bartonella. I am being treated by Dr Kaufman at the Open Medicine Institute. He was of the opinion that treatment might take months, not weeks. Of course, I have been sick for over 20 years, and my immune system has been compromised (low IgG, low B cells, low NK cells and NK function).

 

[xrunner]

Hi @valentinelynx
Have a look at Dr Burrascano's guidelines.
The rheumatologist who diagnosed and treated me used to follow Dr B and ILADS protocols.
For me it worked out just as explained in those guidelines. Bartonella resolved relatively quickly, Borrelia took much longer.

 

[valentinelynx]

Hi @valentinelynx
Have a look at Dr Burrascano's guidelines.
The rheumatologist who diagnosed and treated me used to follow Dr B and ILADS protocols.
For me it worked out just as explained in those guidelines. Bartonella resolved relatively quickly, Borrelia took much longer.

Thanks. yes, I've seen Burrascano's guidelines. Sorry too wiped now to dig up references, but I've seen a variety of recommendations depending on the species, site of infection, etc. Also, relapse seems to be extremely high after treatment cessation. Also, Dr Kaufman (my treating MD) has been accumulating a lot of experience treating Bartonella, so I am tending to trust his judgment in this area.

 

[acer2000]

I had a positive Bart test at Galaxy and was treated for approximately 9 months with Rifampin and Azithromycin. I don't think it helped my symptoms but my test did go negative. I'm not sure if I was just inadequately treated or if Bart wasn't a factor in my illness.

 

[Vitalic]

I had a positive Bart test at Galaxy and was treated for approximately 9 months with Rifampin and Azithromycin. I don't think it helped my symptoms but my test did go negative. I'm not sure if I was just inadequately treated or if Bart wasn't a factor in my illness.

That's the problem, without any evidence of causation you are always hitting something that might be having a negligible influence, that the immune system would deal with if it were not impacted by the actual disease mechanism, whatever it is. I imagine that people in 50 years time will look back with pity at our situation of blindness.

Anyway just to update what I posted above, my rashes are not Bartonella related according to KDM, most likely a histamine reaction. I also get these spider veins all over my chest which looks very weird for a 30yo, but the search for answers goes on.

 

[Biarritz13]

WB positive, negative for barto but a doc think I have it. Foot pain and especially because of a rib pain near the spleen, anyone with that?