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Positive for Bartonella...and I have so many questions!

Firefly_

Senior Member
Messages
235
Location
Oklahoma, USA
Yeah, I'm going to query dr Kaufman about the dx, and if that would change it and also if this could just be another thing caused by my immune deficiencies like the viral reactivations or what. It's all so damned confusing to me, the whole chicken or egg conundrum. Have all of these different problems and dx but what's the root of it all.
 

Firefly_

Senior Member
Messages
235
Location
Oklahoma, USA
@valentinelynx @Strawberry just want to see how ya'll are doing and if you are still on abx?

I was started on valcyte clarithromycin and the rifampin a couple of months ago but Dr K just took me off of rifampin because it ate my lunch (the valcyte is no picnic either!) and my functional medicine dr is having kittens because of the abx and candida overgrowth that I already had and now that's getting worse. He's wanting me off of it all and frankly I feel so crappy that it's super tempting but I'm so conflicted. I want to feel better without causing any irreparable harm and there are studies linking candida with crohns and ulcerative colitis.

So any input from anyone regarding this would be great as I'm just a dog chasing my own tail at the moment and I feel like shite and I have to fly to California in a couple of weeks to attend my dying fathers birthday party which will be a special kind of hell if I can't even sit up for an hour. Sigh.
 

Strawberry

Senior Member
Messages
2,109
Location
Seattle, WA USA
@Firefly_ I haven't been on any bart. medications for a few months. I felt no better or no worse on the meds, so he felt that it wasn't working on the bacteria. Voner is right, if you are feeling bad you need to figure out if it is herx or not. I don't know anything at all about candida, but I would suspect that needs to be dealt with before the bart, but that is my inner gut feeling. Yah, pun intended.

I hope you are able to enjoy your trip with your dad. Don't be too harsh on yourself if you have to lay down, at least you are there with him!
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
@Firefly_. sigh. No simple answers! I was definitely getting better on the ceftriaxone back in September. Then, after a pause of about a month (messing around with my PICC line and other issues), I had lost the gains I'd made. Then, I started back on the ceftriaxone with added rifampin. This time, I haven't seen improvement. Which might be because of the rifampin making me feel crappy? Not sure. But, this year's insurance (had to switch as only one company is offering ACA plans in my county this year, gah!) won't pay for the rifampin, so I guess I'll see what happens without it soon.

Dr K switched me to "pulsing": 4 days on antibiotics, 3 days off a few weeks ago. Right now I can't tell the difference, but all kinds of other things are going on in my life, so it's hard to say what's what.

Well, on reflection there are some good signs. I haven't had any fevers for a few months. My bladder works much better than before. My mind may be sharper. But the stiffness in joints and muscles is back (it really had gotten so much better in my first 2 months on ceftriaxone!) and that's a major drag.

I'm taking Florastor and VSL3 and soil based probiotics to keep the bowels as happy as possible. Actually, they are doing remarkably well considering!

Is there any reason you can't take anti-fungals for the candida @Firefly_? Perhaps even herbal anti fungal medication that your functional medicine dr might approve of?

Good luck on your trip. Travel is hard, but I tend to enjoy it anyway (I get tired of seeing the same walls day in and day out), even though I hate packing: just organizing my medications for travel takes hours...:p
 

Firefly_

Senior Member
Messages
235
Location
Oklahoma, USA
@Firefly_, do you feel like crap from a herx reaction or do you have new symptoms with the addition of abx?[/QUOTE
I'm not sure if it was herx or what as I was feeling a lot of nausea and just ill but I suspect it was also making my Dexamethasone ineffective as I got a crushing fatigue about a week into the rifampin that was similar to the time I ran out of my steroid.

@Firefly_ I haven't been on any bart. medications for a few months. I felt no better or no worse on the meds, so he felt that it wasn't working on the bacteria. Voner is right, if you are feeling bad you need to figure out if it is herx or not. I don't know anything at all about candida, but I would suspect that needs to be dealt with before the bart, but that is my inner gut feeling. Yah, pun intended.

I hope you are able to enjoy your trip with your dad. Don't be too harsh on yourself if you have to lay down, at least you are there with him!

I think I'm right there about treating the candida first and yeah, they are very understanding about my illness and urge me often to lie down so that's not the problem, it's the flight and the packing and as valentinelynx said, getting all of the meds together lol. I really think I'm just going to lay off of it all for the time being and get some other things sorted out first.

Thanks guys
 

renski

Senior Member
Messages
338
Location
Honolulu
Seems anyone with these infections needs to work on drainage, extracellular matrix, lymphatic, detox, gut issues, etc.
 

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
I'm just wondering if anyone has any sort of info or insight as far as treatment efficacy, and does this change my dx from CFS to maybe Lyme disease? Are they the same thing, or is Lyme a completely different diagnosis? I'm afraid that I'm getting my hopes up for some sort of cure. Any info would be much appreciated!

That depends on your total viral load and what viruses are present. You can have bartonella plus chronic viruses, get rid of the bartonella and still have ME. Definitely worth treating and I hope that's all you have.
 

Prefect

Senior Member
Messages
307
Location
Canada
There is a doctor in Canada treating Lyme patients with Disulfiram which is a drug against alcohol abuse but seems to be very effective against Lyme. I vaguely remember seeing somewhere that it’s also effective against Bartonella. I have also tested positive for Bartonella and don’t know what to do with this information.
 

Garz

Senior Member
Messages
355
Post-exertional malaise. In my experience, non-ME patients with Lyme are completely clueless that such a thing even exists.

i am a member of several lyme forums and i can tell you that PEM is very common in people with confirmed lyme disease - myself included

many of those people - a high proportion of the hard to treat cases have bartonella as well

it is also a hallmark symptom of babesia - where the sequestering of organisms, infected erythrocytes and fibrin deposits in the capillaries cause blood flow issues in all organs and tissues - resulting in PEM

ME/CFS is so far just a cluster of symptoms - so i don't think its possible to differentiate it from other conditions as a separate entity

people can have symptoms of ME/CFS due to lyme or other vector born illnesses - or from other causes.
just like they can have a headache from vector borne illnesses - or many other things.
 

Garz

Senior Member
Messages
355
just to add to this post that:
  • the video above "understanding bartonella" is the best starting point to understand bartonella
  • its an emerging zoonotic infection - until the 1980's there were only 2 or 3 known species
  • now there are many different species and strains ( around 30 at last count - with more found each year and more than half have been found to cause illness in humans).
  • it is transmitted by many more arthropods than lyme - not just ticks - but fleas, biting flies - even spiders are documented in the scientific literature.
  • the text books are all hopelessly out of date - they state its a self resolving febrile illness - its not
  • disease severity is highly variable - depends on 2 things - severity of infection - which is driven by virulence - but mostly by something called variable host response - so how each individuals immune system reacts
  • as a result the symptom picture varies dramatically from person to person
  • standard diagnostic tests are very poor indeed - most are well below 50% sensitivity - probably 20% ish
  • that means they miss up to 80% of infections
  • the best tests are by specialist labs - eg Galaxy - who did the video above
  • there is no established "standard of care" and because testing is so poor - end points are guess work
  • typical treatment regimes are 2-3 antibiotics combinations for 1-4 years -
  • treatment in many is characterised as very slow response - often getting worse initially
  • many LLMD's are finding benefits using fibrinolytic agents to help dissolve the fibrin deposits the disease causes and that protects infected cells from clearance by the immune system.
i have bartonella confirmed by microscopy
lyme via positive serology
i had profound fatigue and PEM - and hardly left the house for 4 years

i am now around 60% recovered - able to workout 30 mins 3-4 x per week and walk 3miles each day at a fast pace and continue to improve gradually with bartonella focussed treatment

treatment has been a long road - and multifaceted
i had a v slow response and partial response to antibiotics
but further improvement with fibrinolytic enzymes and antimicrobial herbs demonstrated as effective for bartonella by researchers at Johns Hopkins

its such a difficult infection to treat - there are no simple ABX regimes that just work for everyone
the role the immune system plays in fighting and clearing the infection is critical
i have had to overhaul my lifestyle completely to make progress

i think this makes many people feel it must not be the thing that's making them ill - and therefore conclude its something else - but bartonella and several other vector borne illnesses are just like this

for instance babesia is very similar in that respect - just continuous herxhiemer reactions until you find an effective treatment. ( btw babesia shares many similarities with the closely related chronic malaria infections seen in a high proportion of school aged children in some African states ) - so this chronic fatiguing, hard to detect and hard to treat model is well established in other vector born illnesses.
 
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Garz

Senior Member
Messages
355
bartonella slides from GP letter.JPG
 

Garz

Senior Member
Messages
355
Which lab test produced these amazing microscopy images?

I have IGG and T-cell positivity for Bartonella, but I've learned to be wary of cross-reactivity and functional medicine diagnoses based on alternative labs.
the images on the left hand side are from confirmed chronic Bartonellosis patient from a lab called T-Labs that has been set up by specialists in bartonella research
they specialise in microscopy based testing of tick born illnesses
the chief medical officer is Robert Mozeyani MD - a Yale educated conventional MD who specialises in treating Bartonellosis
https://www.tlabdx.com/tlab-home-page-original

the images on the right hand side are my own images of my own blood taken with a 1970's compound microscope i rescued from a garage sale and restored to working condition - then taught myself how to use.

both are thin blood smears with Giemsa stain at 1000x under oil - a common WHO approved method for the detection of blood born parasites.

i have written about my findings here in this forum - as i was originally diagnosed with CFS and my symptoms match those of the surveys on this forum completely. i suspect many others have an undiagnosed infection causing their symptoms - so i try to raise awareness and provide resources.

i documented my journey into microscopy in this thread on another forum
https://www.healingwell.com/communi...babesia-microscopy-bart-content-topic4268122/
( the forum has been down for maintenance and is a bit slow / glitchy right now but should be back to full function soon)
 
Messages
21
That's kind of crazy. I've asked physicians at top hospitals to refer me to a pathology lab that can do basic pathogen discovery, to no avail. You did it in your garage.

I'm interested in this T Lab and will do more research. I'm really trying to hang on to my faith in institutional medicine, but the FDA is a stick in the mud, actively disinterested in infectious disease research and treatment, Showing Igenex, Galaxy and Infectolab results to hospital based doctors is like kryptonite to the conversation. It seems like the door is slammed shut on alternative labs, casting them to the realm of fringe medicine and quackery with no path to legitimacy. Can their results and interpretations be trusted? Who knows - the FDA apparently doesn't want the question answered.

From T Lab's website:
"These tests have been developed and their performance has been determined by T Lab Inc. They have not been cleared or approved by the U.S. Food and Drug Administration. The FDA has determined that such clearance or approval is not necessary. "​
Partially for this reason, I'm unwilling to conclusively say I have bartonella until it's caught red-handed. Plus, functional docs want make a diagnosis for everything that produces a single IGG antibody. including any food or mold toxin, which doesn't help their credibility. Lastly, I have an RPR antibody - normally a syphilis screen, although thankfully I am specifically negative for that disease - which tracks the severity of my symptoms. I can't find anything that says bartonella produces a positive RPR titer, so I'm left searching for more answers.
 

Garz

Senior Member
Messages
355
That's kind of crazy. I've asked physicians at top hospitals to refer me to a pathology lab that can do basic pathogen discovery, to no avail. You did it in your garage.
you cannot teach people something that they believe they already know
fortunately, there is not much you cannot teach yourself these days, and it need not be that expensive if you are willing to do the work
in my case it would have been easier if i had simply purchased a new microscope for around £300- as at least the equipment would have worked out of the box - but i would still have had a steep learning curve in working out how to use it and developing the skills and knowledge to know what i was looking at ( many people believe everything they see are bacteria etc)

I'm interested in this T Lab and will do more research. I'm really trying to hang on to my faith in institutional medicine, but the FDA is a stick in the mud, actively disinterested in infectious disease research and treatment, Showing Igenex, Galaxy and Infectolab results to hospital based doctors is like kryptonite to the conversation. It seems like the door is slammed shut on alternative labs, casting them to the realm of fringe medicine and quackery with no path to legitimacy. Can their results and interpretations be trusted? Who knows - the FDA apparently doesn't want the question answered.

there is a huge amount of ignorance around in conventional medicine circles when it comes to chronic infections. they have simply not read or learned from the mainstream published peer reviewed research done over the last 40 years on these conditions - this is critical as these are all emerging human pathogens so 90% of what is useful has been learned in the last few decades -
but clinical practice is typically 30 years behind the research - and this is the major reason for the schism in beliefs between lyme literate doctors who treat these conditions and do keep breast of the research - and the other infectious disease doctors on the other side of the argument.

this ignorant defence of the status quo has always been there - they called Louis Pasteur insane and locked him up for talking about microscopic organisms that made people sick - but he was also right all along.

of course there is also over diagnosis on the part of some functional/alternative medicine providers - and some unscrupulous companies specifically target the chronically ill with "miracle cures" or at least unproven treatments . the world has always been thus.

on top of this there are interest groups with huge financial interests lobbying institutions like the FDA to make dictates and policy in their favour - so we have considerable muddying of the waters.
i would simply ignore what the FDA say on this topic and instead rely on the published research.

the way to look at tests - is not so much by the lab that did them - eg Igenex or Infectolabs - as most of these use recognised test kits manufactured by established manufacturers - but by the test technology itself - and thereby understand the story of each individual test in terms of its strengths and weaknesses, sensitivity, specificity - and thereby its overall diagnostic value in your particular case - most of this is documented - if its not - i would say either use a different test that is, or contact the lab to get answers to the questions. each test type has very different limitations

Partially for this reason, I'm unwilling to conclusively say I have bartonella until it's caught red-handed. Plus, functional docs want make a diagnosis for everything that produces a single IGG antibody. including any food or mold toxin, which doesn't help their credibility. Lastly, I have an RPR antibody - normally a syphilis screen, although thankfully I am specifically negative for that disease - which tracks the severity of my symptoms. I can't find anything that says bartonella produces a positive RPR titer, so I'm left searching for more answers.

serology _ tests that detect antibodies to pathogens - are known to be severely flawed in chronic bacterial infections -
chronic bacterial infections dysregulate the immune response in at least 2 different ways
  1. the infection itself interferers with the hosts ability to make the expected antibodies - by suppressing certain immune functions, as part of a survival mechanism - or
  2. alternately in its efforts to clear an infection the host may make many different antibodies causing false positive results to other infections- related to the actual organism present - or others that app[ear totally unrelated. or antibodies to host tissues leading to auto-immunity.
this makes serology highly unreliable and likely as you say to create many false negatives and false positives and as a result interpretation becomes difficult

there are better tests out there - each with their pro's and cons but serology is the lowest rung on the ladder - its cheap - that's why its still used - and the people that do not believe in chronic infections see no need to anything better, due to their circular reasoning and so the cycle continues

galaxy diagnostics has the best published validation study for any bartonella blood test yet documented
its called "Bartonella triple draw culture and Digital Droplet ePCR"
this is your best bet at a commercial test to detect it

after that there is a bartonella multispecies immunoblot from igenex ( still serology - but many more antigens so much better diagnostic value )

Tlabs is good also - but i think can only be accessed by your practitioner / not sure - best to check access

i do not have a practitioner - and j have tested negative for bartonella via serology and LTT tests - so elected to do the work myself

ref RPR antibodies -
bartonella is very closely related to rickettsia so i would not be at all surprised if it can cause RPR antibodies

see below

"What might affect my test results?

Your test results may be false-positive for many reasons. These include pregnancy, IV drug use, tuberculosis, chronic liver disease, recent vaccines, or inflammation of the heart lining or valves (endocarditis). You may also have a false-positive result if you have one of a number of infections. These include rickettsial infections such as typhus or Rocky Mountain spotted fever."
https://www.urmc.rochester.edu/ency...id=167&contentid=rapid_plasma_reagin_syphilis


however Lyme disease is closely related to syphilis and some sources state that it may cause RPR antibodies also

"Some potential infections that could cause a false positive include:
https://www.medicalnewstoday.com/articles/322204#results

(i just grabbed some quick links )

in general in the chronic Lyme doctor community - the best respected doctors - the ones that have been practicing for 20 or 30 years like Horowitz and Jemsek - believe most cases are in fact polymicrobial infections consisting a number of pathogens usually including Lyme disease, bartonella and babesia as the main driving infections - but other smaller players often being present making the patient more ill and harder to treat. treatments targeting these three are the most successful in chronic cases.

this may simply be because if you treat for spirochetes, small intracellular bacteria ( bartonella) and single celled parasites - then you cover most basses and the patient gets better

in my case it has helped me considerably to know what i was dealing with
Lyme with a high degree of confidence, Bartonella definitively,

i am making progress by treating focussed on lyme and bartonella - but its a long treatment course with gradual slow improvement - not a few weeks or even months. so again its helpful to know with certainty what you are facing as otherwise one might be tempted to give up or simply conclude it cannot be that.
 
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Messages
21
Institutional dismissal of the alternative labs seems to be based on their interpretation of results, not their actual methods, antibody titers, etc. If the labs didn't issue diagnostic opinions and instead just published raw data for clinicians to interpret, maybe there would be no basis to dismiss their results.

I'm not saying I agree with the alternative diagnoses, it's just a frustrating logical fallacy in a deadlocked debate that needs to make progress.
 

Garz

Senior Member
Messages
355
Institutional dismissal of the alternative labs seems to be based on their interpretation of results, not their actual methods, antibody titers, etc. If the labs didn't issue diagnostic opinions and instead just published raw data for clinicians to interpret, maybe there would be no basis to dismiss their results.

I'm not saying I agree with the alternative diagnoses, it's just a frustrating logical fallacy in a deadlocked debate that needs to make progress.
the whole discussion about interpretation of serological tests in an illness driven by a pathogen which is demonstrated to disrupt the host antibody response ( ie the very thing you are measuring) - is pretty much a waste of time. do not get side tracked with it.

further - if a society believes that the incidence of an infection is low - and then it finds high prevalence of antibodies to it in the population - they typically just keep moving the threshold of what constitutes a positive test further and further up the scale until they satisfy themselves they are getting an expected test result.

the old paradigm of - infected equals ill with recognisable symptoms - breaks down with these slow growing organisms that have evolved to infect the host long term without killing it (in order to give chance for them to be transmitted to new host via relatively rare events - like tick bites).

as test methods improve we will come to realise that many many people are infected - but living normal lives - completely unaware - or only having mild odd symptoms.

then when an event occurs to suppress the immune system - which could be a viral infection, prolonged stress, trauma, overwork, a surgery etc - the infection can get the upper hand and now they become ill
with a mystery disease - but this could be years after the initial infection event.

in terms of antibodies present - there may be no difference between the group above who seems well - and this group who are sick

its an old debate - but serology / western blots are not the only test method out there -
there are tests for borrelia that use the European strains ( most commercial tests use American strains rarely found in European patients ) and there are better test methods arriving now that do not rely on host immune response.

the prevalence issue is an interesting one
there is a published study based on phage technology developed at the university of Leicester that shows 50% of healthy controls have borrelia inside them - and studies of older people in Germany 50%-60% of whom test positive for borrelia antibodies.
there are also good evidence from mapping the complete DNA of borrelia from couples - where the exact same strain was found in both sexual partners - which could not happen by random tick bite - providing good evidence that the organism can be spread sexually - not only via tick bites or in-eutero. this is also not very surprising as syphilis a related spirochete is sexually transmitted - and lyme spirochetes have been found in genital tissues and genital secretions of infected people.

perhaps this high prevalence should be no surprise. after all borrelia have been on this planet for many millions of years humans have hunted animals that carry ticks, and carried them back to their camp, foraged in the undergrowth and forests where ticks quest and slept with their tick infested animals for millennia - so its likely just a normal part of our environment that we will have been exposed to as a matter of course.

usually such diseases mainly afflict the weak and help evolution along.
these days so many people are living so far from our evolutionary template - our diets, lifestyles, sleep habits( or lack there of) stress levels and chemical exposures may simply be weakening us to the point where many more of us are becoming ill with things we would once have been able to fight off.