bartonella

vision blue

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Just thinking out loud since not sure if i should purse this lead or not. In 2107 unexpectedly a ubiome test i did for fun on 5 sites, turned up bartonalla on 3 sites. i repeated it in 2018 or was that 2019, on just my skin (on a lesion) the following year, and again found bartonella, this time in higher quantity. but Ubiome has been contradictory on the issue of how commonly this is found in their comparison samples no matter how much i try to get them to clarify.

last year , i did test for igg and igm antibodies to the 2 most common types at a conventional mainstream lab (becasue of the ubiome bartonella result) . they were both negtive, but i've hard if you really do have a bartonella infeciton, this is common to have such false negtives.

so i dont' know how far to take this. On the one hand, it would fit my symptoms extermely well, right down to some oddities (like some retina and eye thngs), as well as being in a very heavy lyme endemic area at just the suspect time with dogs and fleas and the whole bit. On the other hand, its not the first time things seems to fit all my symptoms (like mast cell overreaction) and uBiome i don't think can be trusted.

i know about igenex and galaxy labs, and i can get the tests ordred. but the time and effort and expense, i just don't know if this is a worthile basket for the few eggs i've got left. Oh, a real expert in the area thinks bartonella on skin and nose and mouth (also found for me) would indicate active infection- if you can trust the lab, but i don't think ubiome can be trusted even before the news on the company as of late.
 
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I too suspect the involvement of Bartonella in my illness. Like you because of the symptom match and also the environmental factors I was exposed to at the time of becoming ill. I also have experience of Ubiome - in my case, I did only stool samples and there was no mention of Bartonella in that sample ( though I am not sure if they would report it in the gut profile if it were, as I doubt its one of the target species).
You may wish to read my previous post on Ubiome on here - as there were gross discrepancies between the Ubiome test results and other DNA sequence-based tests done at a different leading lab in the same time period on both my partner and myself in teh same time period. the only logical explanation is that one or both of those labs produce results that are complete fiction. I suspect the technology is just not developed sufficiently in either for enough accuracy to be useful.

Which lesion were you referring to - as far as I recall - there has been little success detecting Bartonella from teh classic striae lesions that appear on some patients skin with the disease ( this could be out of date now )
https://www.google.com/url?sa=i&sou...aw12ZBkZ71dJW4ZwECP3zFlt&ust=1567248834409933

but much better success via culture of swollen lymph nodes ( a classic symptom) and initial bite lesion.

I was tested for Bartonella via Armin Labs Germany - but this was via Elispot ( lymphocyte transformation test) and was negative - but there are numerous difficulties with all indirect tests for Bartonella - including ELISA. IFT and LTT - and my Natural Killer cell count was around 1/10th of the average normal range - and LTT are thought to be prone to false negatives in this case.
That said - Bartonella has been shown to reside in the skin long term in the chronically infected and so the samples you have had sequenced could have contained it - in fact, standard PCR is more likely to pick it up there as Bartonella is not in the bloodstream in any appreciable amount most of the time. Instead, it lives mainly in endothelial cells lining the blood vessels out of reach of most of the human immune system defenses and only releases into the bloodstream periodically (This can be linked to periodic fluctuations in illness symptoms). I believe it has also been found protected inside keratocytes in the skin and been shown to resist even combination therapy with multiple antibiotics there. eg fever/sweats, malaise, hemolytic anemia. This periodicity may vary with species or strain).
I have read extensively into the science-based literature on Bartonella - its a deloping field with new variants being discovered all the time and still plenty of vagueries and mysteries.
About the most knowledgeable I have found is a vet called Edward Breischwerdt - he had been at the forefront of research for some years now and had identified several new strains, characterized the diseases they cause and treated animals and humans. I think he may be linked to Galaxy diagnostic - as they use the enhanced BAPM cultured PCR test for it. that would be the lab I would use if I were to pay for more testing.

if you can point to another expert I would be keen to research them also.

Richard Horowitz MD has recently written in published papers and his latest book "how can I get better" that most of his hardest to treat chronic Lyme patients are infected with Lyme and either Bartonella or Babesia. Several recent papers from around the world have found that both the worst effected Lyme patients and supposed Post Treatment Lyme Syndrome patients are in fact infected with multiple co-infections - from memory over 70% of the chronic lyme patients had co-infections as well as Lyme. So since you are in a Lyme endemic area ( actually that can be anywhere in the world) it may be worth considering more than one infection - and/or Lyme as a primary part of the picture.
Lyme testing is notoriously grey also - so if you have been tested for that and found negative - its is likely worth retesting via an alternate tests. as its now established that 20% of chronic lyme patients never deelop detectable antibodies at all and also that the supposedly reliable surface protein antigens that are supposed to be expressed by all lyme species and strains - eg C6 Elisa and many used in western blots - simply are not. Borreliia Garinii prevalent in Europe, for instance, simply does not express the C6 protien so is v unlikely to be detected with that test - yet is present in around 40% of infected ticks in europe. Other strains around the world are likely similar in terms of thier variable surface protiens vs the standard lab strains on which the widely used imunological tests are based.
I had 3 negative lyme tests via C6 Elisa and Western Blot before being found positive via a different ELISA test using the whole body lysate of all 3 major species (Burgdoferi, Alfzelii and Garinii) made by Ticplex Finland . Note: there is an increased chance of false positive results with whole lysates - but thsi result -the v low CD57+ count and the symptom pattern are compelling in my case)
Don't hang me on the specifics - the above is all from memory - but should be easy enough to find.
 

vision blue

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@Garz Thanks for the post and good to hear from someone who has read the literature. So far, have only read 7 papers. Five from the vet Breischwerdt, who i've interacted with, one on macular holes in bartonella - can't remember the 7th. Breischwerdt said that he would think that positive results for the bartonella dna on skin, nose, and mouth suggest active infection- assuming one believes the lab. And the last is a big assuming.

so back to ubiome, i did read your post on the discrpeant results. there are many such stories on web- but actually those don't bother me. Probelm is the gut harbors so many bacteria, the shot gun approach is pretty random as to what will get detected, and they can indeed be wildly different. But i also do not put any stock in the repeated testing etc that of course ubiom pushes for- and for the same reason. If there was such a big discrepency on sites where there is fewer diversity of bugs- e.g. the same place in oral mouth (e.g. buccal region), then that would be more of a problem.

but yes, the techonology is limited and one of the reasons i question bartonella result - one big problem is that the reads are of short length. this means you can get a pretty close match of the same found (short) sequence to different bugs so it depends how the software is calling these things. (not that there is a good calling solution to this problem but does mean there will be false positives).

another reason why i suspect false positive is that as i started to describe, the amount of bartonella found in skin at ubiome is just too high. The average of everyone, all skin samples, is that people have, on average 0.41 percent bartonella. that may seem like a small amount and ubiome is under the impression its a small amount (at least the high school students that email with the customers) but that's actually quite big. To get that high to be an avarge number, there are a few different scenarios, but am suspicious of all of them. it may means alot of people in the database have detected bartonella- but ubiome won't tell me how many. In one place they say less than 5 percent, but that was changed and it vanished off my "elusive" less than 5 percent list, yet when emailing with them, a second person still thinks its on the elusive list.

Shouldn't be found in the gut though, so that makes sense at least. Has not been found in any of my gut samples either - maybe 5 of them. . And so far, 2 out of 2 skin samples, 1 out of 2 mouth samples, and 1 out of 2 nose samples, 0 out of 2 genital samples..

on skin sample, by lesion what i meant - have had a crusty growth on nipple itermittant flareups. antibiotic cream does not fix it and scraping sent to pathology turned up nothing- but i'm guessing they only looked for cancer cells. On my second skin sample, got curious, and used that nipple during a "flare" as site of sample. That turned up 0.81 percent bartonella, the most i've had. The one the previous year was the standard behind ear sample, and it was a very small amount detected. But as i've said, i just dont know if this is a false positive, and ubiomes complete lack of disclosure of comparison info, and their continuing to contradict themselves leaves me just not knowing. So its one reason i'm looking for others who have tested skin at ubiome- need to see for myself if people have bartonella detected, since ubiome does not provide useful info.

that's intersting on your NK cells. I'm not sure mine has been tested, but do find i'm not a big antibody producer and my test results are never impressive.

for lyme, i think i mentioned, westen blot at both IgeneX and a local lab turned up with same reaction to just one band, one that is non-specific and does not point to lyme (to the flagella. i guess tons of organisms have tails). ELisa spots always negative, but of course those are useless. won't go into the story again on how the lab now refusing to do the western blot, even when doc orders it, w/o first showing a positive elisa. I have no particlar reason for suspecting its a false negative. And if one goes the routes you metion, i do think false postivies are a big prlbem. so bottom line is i'm back to being nowhere.

going back to the vet (oh, the 7th article i read was on breast cyst and bartonall), he does seem smart, and his research into vector borne illnesses in animals i assume predated his financial conflict of interst with Galaxy lab (i think, haven't yet checked), but nonehteless, those ties still a bit troubling.

Anyway, haven't a clue yet on what to do- maybe i'll eventually try a very small amount of a non big pharma approach to bartonella, but am rather cautious for good reasons so not sure. I suspect for me there's no way i will be able to address it. may need to instead find a way for my body to live with the infection and it sounds like a lot of healthy people must be living with it.

p.s. one thing i can try, but not sure worth the effort, is i could try again at ubiome but at the same time i collect the skin sample, collect two samples,one in the spare tube. send one to ubiome. if it turns up bartonall aagain, then send the second tube to a real lab to get a PCR for bartonella. Tried to get the vet interested in me as a case study, but so far , he's not biting. But maybe i'd trust more anyway just an ordinary lab that does pcrs. if ubiome can detect it, then a targeted pcr should be able to amplify it too - i'l check the minium copy number for a pcr - maybe its like 100 copies? am pretty sure ubiome found more than that, but will check that too (easy).
 

vision blue

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p..s. Looks like the count is 483, if i can take that column ("count") at face value. That should be enuf for a PCR to amplify it - assuming my next test would also have those numbers again. (on the previous year, skin behind ear only picked up 14 copies, which would not be enugh for standard PCR I don't think, unless one used the vets special patented growth medium which i don't know if i can trust).
 
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ref a way forward - I will pass on my own feelings based on my fiance's and my own personal experience over the past 5 years and the now dozen or so books and hundreds of papers by all the renowned researchers, clinicians and even herbalists (the scientific ones) I have digested in my own quest for a diagnosis.

-arthropod-borne chronic illnesses are a very complex area of medicine - especially in terms of diagnosis and treatment.
-the interplay between differences in individual genetics, environmental factors, immune system, and typically multiple (arthropod bourne or community-acquired) infectious agents infecting each patient cause an extraordinarily wide array of symptoms.
-Most of the clinicians that are successful in this field use a wide net of possible differential diagnoses for each major symptom and a v large number of tests to try to build the case for and against each of those - whilst understanding many "diseases" may be concurrent and many individual tests are not reliable. So the task becomes to build a probabilistic pattern of likelihood for each potential root cause based on the patient history, clinical symptom pattern and many test results ( often several tests looking at the same thing from different mechanisms in order to build a more reliable picture).
-There are no deterministic, black and white answers in a situation where the knowledge is so incomplete, the tests so variable in performance and the conditions so complex.
- relying on unpicking this complexity with a single test is just not likely to yield an optimum way forward. ( based on the Ubiome company ethics, the early stage of the technology and the disparity of results I an others have found - I would put that one down as a 50/50 and look for other tests to build a case for/against Bartonella as a causative element in your illness)
- we have to be wary that we have all absorbed and subconsciously operate to some degree with the current mainstream medical paradigm - that all illnesses have one root cause and one treatment. Whilst this model is attractive, is simple to action and maybe sufficient for most acute illness, the evidence over the last 10-20 years regarding chronic illness absolutely contradicts this. So it is wise to expect multiple causes/infections.
-treatment of multiple root causes is often required simultaneously for people to get better.

As potential ways forward I would suggest the books of Richard Horowitz who has treated around 13,000 patients with tick-borne diseases and is one of the most respected Lyme literate doctors around. His last book "How can I get better" seems to be a little more practical in terms of step by step approach.

It includes a tick-borne disease questionnaire that has been demonstrated as useful in distinguishing tick-borne diseases from other illness in a published large scale study. If you have had all the usual standard medical tests without answers, and you came out with a high score in that - eg well into the probable tick-borne illness zone, this might help build confidence on going further down this track

Some of the specific things that come to mind for Bartonella differential are - its symptom pattern usually includes some form of angiogenesis (increased blood vessel formation) this can be in the form of lumps/ growths / benign tumors), forms of vasculitis, or small vessel abnormalities.

Tests for VEGF ( vascular endothelial growth factor), which drive this, are often elevated in chronic Bartonella infection - and if present would give you an indication from an entirely independent direction to support pursuing Bartonella infection as a potential co-diagnosis.

There is also a skin biopsy test looking for small vessel anomalies and nerve damage directly via microscopy - but I cannot recall who does this - probably also linked to Breischwerdt.

If you do commit to pursuing the tick-borne illness route - I would also support testing Via Armin labs.
but would advocate testing for multiple organisms and via multiple tests for each.

As an example - In My case, I was C6 negative, Western Blot Negative ( UK NHS) but Positive via the Tick plex test fom Finland via Armin on both IgG and IgM antibodies. Negative by Lyme Elispot (an LTT) and very low CD57+ count (a specific type of natural killer cell )

Interpretation is therefore tricky.

However, the tick plex test was the only one that includes antigens from Borrelia Garinii - which is present in around 40% of Lyme infected ticks in the UK (based on a couple of studies)
Further research showed that the surface proteins of B. Garinii do not contain recognizable C6 protein or the proteins used by the NHS for western blot. Which would explain negative results on those.
Armin has informed me that the sensitivity of the Elispot tests is also much reduced when the degree of immune suppression is high - my CD57+ count was around 10% of the mean for healthy controls - so this could explain why the Elispot was negative - not only for Lyme for all other organisms tested.

I have then researched the tick plex test extensively including discussions with the authors of the published study and found its false positive rate to be small.

In fact if you look at the calculation method used by that study on the tick plex test - it will always over-report the false positive rate as the CDC criteria is being used as the reference - and this has an interesting effect on the numbers ( essentially any time the tick plex test finds a positive, that the CDC criteria did not, it will cause it to be recorded as a false positive - when in fact its entirely possible that person was infected all along - as the CDC criteria are known to be less than 100% sensitive for all the reasons discussed here and many other places - eg its now known that 20% of infected persons never make detectable antibodies at all)

Added to this our symptom pattern is a very good match for Lyme/coinfections in general and the strong neurological symptoms typically caused by B Garinii in particular.
We both also score well up there in the high probability zone for tick-borne illnesses on the Horowitz questionnaire.

Further, I have been tested for a vast array of autoimmune disorders, genetic mutations, routine blood etc and seem experts from up and down the UK with no diagnosis or explanation for why my partner and I could become ill at the same time with the same symptoms. So many other differential diagnoses have been ruled out.

So on the basis of all of this and responses to various treatments, we have come to the conclusion that there is a high probability we have a Lyme disease infection - most likely B. Garinii - possibly with co-infections.

So you can see it is not black and white - but on a balance of probabilities approach you can come to a point where you are confident enough to move forward.


By the way: I have read there is a general feeling that Armin Labs may have high false-positive rates - but I am not sure what exactly it is based on. Would be interested in your view.

I wish you all possible good luck and continued determination in your journey
 
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vision blue

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@Garz

There are a couple of differences between us that make your suspicion of bartonalla more compelling to act on than mine:
you test negative for AI disease and your partner got the same thing around the same time.

in my case, I also have sjogrens and some argue all these symptoms can be from that, even though others (including myself) do not think so. And i don't have the very helpful clue that another unrelated person got it which in your case suggest an infectious or at least envtl agent.

so that makes a huge difference on willingness to act in the case of questionable test results that we both have.

We are in agreement that parsimony (one root case) is overated amd falsely overued in clinical medicine. It's indeed the opposite. I may write a paper about that one day.

As I mentioned, the lack of agreement between ubiome and other places on gut samples is not a problem, but do agree for other reasons, its about a 50 50.

i like the vascular growth factor idea - but then again, if i'm positive, i'm guessing someone can argue its from sjogren's. and yes, i do have evidence of blood vessel and endothelial issues and small vessel disease- sudden very high blood pressures, a liver hemangioma (that i was not born with), loads of hot flashes that I do not believe are hormonal, 90 percent body hair loss, some intermittant neuropathy.
REcurrent herpes virus remains in the suspect list as well (herpetic type rash)

also like the cd57 test idea. i believe i am immunosupressed (or depleted) and its affecting test resutls

so for me, i don't think they can be easily teased apart, and likely will not be.

only thing i would be persuaded by is: i retake nipple swabs using 2 swabs, and send one to ubiome. if a repeat ubiome test turned up more than 100 copies of bartonella, i then send the other swab to a normal PCR lab (not Galaxy, not enhanced with growth medium, not other places with false positives) and if that's positive i have (one of my) smoking gun and if not, i dismiss the ubiome fueled idea as false and ignore the whole idea (incless something else happens to put it on radar). But i thin i'm unlikelyto go thru the effort of this - too much going on.

or if 100 other ubiome skin samples, preferably some from same batch as mine, were to show up at my doorstep i would for sure analyze carefully. if i'm the only one with bart, then i'd count that as evidence. If 50 percent have bart, i'd count that as counterevidence.

so i'm nowhere. we will see...Thanks for the thoughts.

@gbells Yes Galaxy lab goes with the vet we were talking about. He developed the culture enriced testing and uses the 3 day draw as further way to increase sensitivity. Not sure (for me anyway), this is the right way to proceed. NOt sure I would believe a positive in their lab.
 

gbells

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Vision,

Bartonella is distinct from CFS. It's great to be found with Bartonella because it means after antibiotics you are cured. CFS/SEIDs unfortunately doesn't have a cure as of yet.
 
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@Vision

I hear you, and I do sympathize with the difficulty in getting to the bottom of these things.

I follow your reasoning with perhaps only one exception

If I were in your shoes I would still seek out a number of other discrete factual data points that could contribute to the picture and enable you to build a better picture ( one that did not rely on a single test house or technology ). even if each of them individually were not 100% diagnostic.

The symptoms on their own are a bit like observational studies in the scientific literature - they can provide clues to pursue further, but they can never prove causality - too many overlapping pathways to each symptom, So, we need more data points to draw useful probabilistic conclusions.
( I have been there and I know how it feels to look at the same data points over and over from every possible angle without getting anywhere, I have also done that to perhaps the greatest degree possible for a long time )

The veracity of Ubiome concerns me after what I have seen in my own results and i don't feel confident their methods are even valid and repeatable - or the quality control is there - too many question marks exist.

I note elevated VEGF is indeed associated with auto-immune disease - but then the types of auto-immune disease it is associated with ( MS, Rheumatoid arthritis, Systemic lupus )are themselves associated with infections with one or more of the intracellular pathogens in scope for these type of symptoms picture. eg Lyme, bartonella, mycoplasma, chlamydia etc.

I am actually in the same boat to some degree - in that, I have Hashimoto's and positive ANA in rheumatology tests - but in my case, I do believe these are caused by the underlying infectious agent.

I held off doing more testing for a long time as I had one supposedly reliable test in hand that said negative and the idealist in me was loathe to spend money on something I could not have 100% confidence in.

But as time went by I realized, science is not perfect or clear cut, my life is passing me by while I am ill and the financial justification was, in fact, an easy one in the end - as I am losing several thousand pounds a month in income - so if I can shorten illness duration by even a few months - or improve function a few % it will pay for itself several times over (even if individual tests are themselves imperfect)

so I would do something like
VEGF
CD57
a range of infection serology tests (probably through Armin)
eg. maybe thier full Tickplex panel
perhaps add elispots or ELISA's for any organism you feel are a good fit
( BTW - Armin do a questionnaire to help patients select which tests may be worth testing for on their site )

Good luck again - I hope you find a way to move forward.
 
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