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aperiomics

Messages
80
I'm thinking about getting this test but I'm wondering if, for suspected chronic bacterial infection (like Lyme, Bartonella, mycoplasma, etc), there might be a better sample than blood ? Blood is not great for this test since it's usually sterile and these types of chronic infections persist with low levels of bacteria.

A skin sample (punch biopsy) perhaps ?
 
Messages
85
I'm thinking about getting this test but I'm wondering if, for suspected chronic bacterial infection (like Lyme, Bartonella, mycoplasma, etc), there might be a better sample than blood ? Blood is not great for this test since it's usually sterile and these types of chronic infections persist with low levels of bacteria.

A skin sample (punch biopsy) perhaps ?
I don’t think it’s a good idea. Not sure in skin there is a higher level of pathogen. An idea this test - to determine the presence of DNA, I believe that there should be traces in the blood, despite a low level of pathogen load. It’s still systemic and not local infections. Its my thought about
 
Messages
80
I don’t think it’s a good idea. Not sure in skin there is a higher level of pathogen. An idea this test - to determine the presence of DNA, I believe that there should be traces in the blood, despite a low level of pathogen load. It’s still systemic and not local infections. Its my thought about

My thought was that these type of pathogens are found in skin, muscles, connective tissue and aren't found much in the blood. Maybe I'll have to roll the dice and see if I get lucky..
 

Garz

Senior Member
Messages
363
for those interested in using PCR methods for lyme and co-infections - there are some provisos

latest research shows that bartonella in particular is rarely detected by PCR of the blood

the best test out there at the moment for bartonella uses 3 separate blood draws to try to catch a sample with some bacteria in it - but pcr of that is still unreliable so - it is then cultured in a special media ( based on insect lymph fluid) - to try to increase bacterial dna content and then finally PCR is done on the resulting culture. this is the most sensitive bartonella blood test available worldwide at present - but even with these steps the lab is only able to claim a 49% sensitivity ( see galaxy diagnostics website ) https://www.galaxydx.com/

the reason is that bartonella when in the blood is not mixed uniformly in the blood but exists in clumps - its pot luck whether you get some in the sample.

bartonella is found reliably in the skin of patients with chronic bartonella infections via immunofluorescent staining and confocal laser microscopy - it is found at site of lesions - and in normal looking skin
there is a research lab that some physicians can access called Tlabs that does this test on skin punch biopsies.
https://www.tlabdx.com/

PCR of blood for lyme disease has similar issues - fares a little better - something around 50% sensitivity on a single draw - non cultured sample. skin samples, lesions scrapings, synovial fluid etc can yield better results

there are still issues with testing for all of these organisms - but both of these labs were founded by respected world leading clinicians and researchers in the field
 

vision blue

Senior Member
Messages
1,891
I had bartonella turn up on my skin when doing a microbiome of skin. Waa an i incidental finding but made sense. Also turned up i think in my nose- have to check. Sometimes i think thats significant, other times i think it ljust points to the prevelence of bartonella everywhere which is becoming more and more recognized

I just sent some urine in forregular pcr but dont have much hope will turn up
positive. Having q lbout of new onset strange shin rashes and odd symptoms that even had an ordinary MD suspect lyme. If i do i wonder if entirely new or a flareup of old too .
 

Garz

Senior Member
Messages
363
I had bartonella turn up on my skin when doing a microbiome of skin. Waa an i incidental finding but made sense. Also turned up i think in my nose- have to check. Sometimes i think thats significant, other times i think it ljust points to the prevelence of bartonella everywhere which is becoming more and more recognized

I just sent some urine in forregular pcr but dont have much hope will turn up
positive. Having q lbout of new onset strange shin rashes and odd symptoms that even had an ordinary MD suspect lyme. If i do i wonder if entirely new or a flareup of old too .

bartonella goes wherever lyme goes - and more places besides - ticks, fleas, lice, biting flies, spiders etc

as detailed above there are real problems with sensitivity in all forms of testing for bartonella

however bartonella can be detected in blood via microscopy with Giemsa stain at 1000x under oil with a regular bright field biological microscope - a $300usd swift or similar microscope from amazon will be good enough with some practice - or an old lab microscope from the 60's 70's or 80's from ebay

it does take a good deal of patience though as due to the clumping effect ( bartonella is not mixed homogenously in the blood) - so you may need to inspect several slides before you find clear cut cases of bartonella infected cells
the good news is that nothing else known creates the distinctive pattern in red blood cells that bartonella causes
i have documented my experiments and findings in this thread
https://www.healingwell.com/community/default.aspx?f=30&m=4268122

the best general resource for information on bartonella is this presentation by the foremost researcher in bartonella for the last 40 years Ed Breitschwerdt and the foremost clinician Robert Mozeyani MD

note the identical presentation in my slides as in Dr Mozeyani's presentation
 

vision blue

Senior Member
Messages
1,891
@Garz That's a great resource. thanks. and look forward to reading your post.

Does that mean test i was about to do is useless? i was going to have a go next week with IgeneX test for bartonella immunoblot IgM and IgG

editied to add: also was planning on doing the lyme immunoblot igm, igg also at same time.

edited again to add: just read your post on th elnk page 1 of the replies. Def great that you did that. I asuume when "normals" test their blood, they don't get all the odd stuff that you guys are getting? i have thought many times of doing the microscop thing- was hoping someting i could attach to compuite rand view images that way rather than having to look thru a microscope- but dropped it as coudn't get enough magnfication on something small footprint and light weight etc.

if you know anyone in the states wholse willing to look at other peoples blood smears...

now i have to go back thru your posts to see if you are making progress wioth treatment

symptomwise, i have symptoms both of bartonella and the one you mention babeseia that i had never even considered until reading your posts.

my urine antigen tests are ready- but havn'et read them yet. i'm expecting all will be negative which will dash my hopes of a quick detection...
 
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Garz

Senior Member
Messages
363
the igenex bartonella multispecies immunoblot is one of the better serological tests out there - and since it looks for antibodies to many more antigens from different bartonella species than a single antigen test it is probably worth the money

but - all of these stealth pathogens - just due to the fact that they need to survive in the host long term / become chronic - by definition also mess with the bodies ability to make antibodies and so there are always issues with sensitivity on serological tests

Roberto Maggi - one of the world leading researchers ( he works with Breitschwerdt) gave a presentation showing that due to genetic variability in bartonella species he thinks that you would need to look for antibodies to around 45 different antigens to reliably detect it with serology.

but i think igenex are using the top 8 or so - and so has reasonable coverage - its a cost vs performance thing
=galaxy triple Draw digital PCR is teh best but around $1600usd
=T-labs confocal imunohistology and laser microscopy - is the next best - and around 1000usd i think
( but access only via Dr M or doctors consulting him i believe )
=igenex bartonella multispecies immunoblot the next best and cheaper - $600ish i seem to recall
sensitivity probably around 50%
= all the other single antigen serological bartonella tests (IFA, ELISA etc ) have v low sensitivity - probably under 25% - so i personally would not bother with these

ref microscopy - a little portable cheap usb thing will not do it - no matter what it says in the advert

you need a reasonable machine - lab spec biological - so either a proper one from the 60's or 70's second hand ( which is what i used and it cost only a few dollars and a bit of time to fettle )
or one of the cheap but useable india /chinese made Swift or Amscope type biological compound microscopes
these can be purchased with USB camera attachments to view via a monitor
these can be purchased for less than the cost of any of the above single tests and can be used over and over and sold again after for much of the original asking price

you need at least a 100x objective and 10x eyepiece for 1000x total
the objective must be oil immersion type for this magnification
the camera needs to be at least 5mp
you will also need Giemsa stain and a little practice - but its very rewarding

ref lyme immuno blot - the issues with serology for lyme are very well documented - that said the immunoblot gives more chances to find antibodies than a standard elisa - and Igenex are one of the better labs - so its not so much that its a waste of time - but more that you need to understand the limitations of the test to interpret it correctly -
-ignore the CDC criteria - even the CDC clarify this was never intended for clinical use
-be aware that false negatives are 5-8x more common than false positives when evaluating your results
-if you have been ill for years do not expect to light up all the bands - that can happen but seems to be rare

i am making progress - am now able to get a lot more done in the day - am sleeping better - my brain works much more like it used to and have been able to start working out - but i am also sensitive to treatment which typically causes symptom flares so its a slow process where i have to go very gradually with any treatment protocol and manage the herx type reactions / flares of symptoms.
this is a very common issue with bartonella patients.
 
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vision blue

Senior Member
Messages
1,891
@Garz Thanks much for reply. Will go ahead with both immunoblots assuming the doc doesn't balk at the script i asked him to write. I had read a bunch that made me think those from igenex would be my best bet given i can't take them all. I had seen galaxy but the process is harder- iGenex makes it easy i can just get a script and me or the doc can fax it in- so keepis it simple for the doc too and he'll write a script before thinking too much about it.

read my antigen reports.. iknow i was expecvting nothing, but still disappointeed every last thing was negative. scrolled thru it slowly negative negative negative held my breath when i got to bartonella wishing for a postiive...Anyway, the test i took i mentioned was the urine antigen. one i know is sort of a crappy option but went for it anyway- the old Lyme Dot Blot that got a lot of bad press early on. Did times 2 (2 day seample) rather than 3. Plus did the PCR for antigen that looks at 7 different tick borune diseases (including lyme and bartonlla) and comprises 14 sepearte things they try to amplify with pcr). No fun to read 14 negatives. would have made my life easier if were postiitve.

microscope is just beyond what i can set up right now. They are undoubtedly heavy in weight as well and just can't manage. Would love to hae that as part of a home lab. I also thought about getting my own genetic sequencer- they cost at most 1 thousand - they are even portable. would llove love love that. But the reagents and stuff get pricey and also figured with my MCAS, i'm not sure i can manage the chemcials anyway. So i remain at the mercy of others.

cool that you were able to do it.

if i were guessing, i have a long standing tick bourne illness but it is not the cause of my chronic disease. i think it flares occasionally and contributes to the body burden. Also got someething new recently though suppose could be a flare fup that produced large circular rash (fisrt one, then two, then faded two reappeared a few times) and a long red welt like but thin rash. my first guess had been shingles given that herpes viruses seem to be the bane of my existence now but after the circular one as well as some other input, i figured i better check out this stuff

once before i had some blood drawn and sent it to igenex and asked for a western blot. I knew not to believe the CDC critieria on the large number of bands that need be present based on reading back then. Anyway, test came back as only one or two bands positive and even by igenex criteria, since the bands were not specific for lyme, it was called as a negative test. I say one or two becasue i remember that one of them had me luaghing, so i've hung on the memory- it was to the flagella - the tail -so somewhere aong the way i had some motile beast....and developed antibodies to its tail...cool...ONe other cool think is I had previously had a western blot for lyme done by a local lab at some point prior; never was sure if i should trust that - or trust igenex - but the igenex test turned out to have the identical bands show up, so that validated both labs and gave me trust in ignex.

back then, docs were allowed to override the crap 2 tier recommendation by cdc and ask for the western blot regardless. and ID doc did that. but now, when i ask my docs to do that, and they comply, the lab refuses to run the WB once the ELISA comes back negative! Had that happen before, so stopped testing, but now given the new rashes, i figured i'd have a go at it again since i always wanted to have igenex test bartonella. I did get a doc to order a local bartonella antibody test when i had found the bartonella on my skin but they only test for the bartonell H. one- and figured based on eveything i read it certainly wasn't that.

when i got the bartonella on skin and elsewhere i had consulted with a couple of experts via email. One said that undoubtedly means you do hae a bartonalla infection but the other was not convinced and i tended to think the latter is right. I will look up that result again and see exactly where was found and how often. Not sure i trust the company that did it though- that was uBiome - that went out of business because they got greedy and tried to bill peoples insurance for many thousands for tests they were charging consumers under a 100 for. They always refused to answer my questions on clarfications on data which raised a red flag for me. A similar red flag went off when i had been looking into Theranos and was on phone with them severl times trying to get basic questions answered and could not - and we all know what happened with theranos.

Glad you're making some progress - that the trajectory seems in the right direction. If you were closer, i'd probably try to convince you was worthwhile to look at mine too...both for comparison, adn perhaps we could favor trade...

anyway, thanks for your comments.
 

vision blue

Senior Member
Messages
1,891
@Garz and others...

finally got the result of my IgeneX Lyme and Bartonella immunoblot results. Took 3 weeks.
For bartonella, everything was negative, igg and igm
For lyme, all igM was negative

For Lyme IgG, it's mostly negative but....leaves one head scratching.

Band 41 is positive. Two more of the lyme specific antibodies are "IND" meaning indeterminate. Eveything else negative. asked igenex what that meant thinking that meant they couldn't see those regions for some reason, but i was surprised when they said it meant they do see a response at that location but that it wasn't enough of one to call it as a positive. But now knowing what IND means, i understand why on some Lyme forum they said that a positive 41 along with another lyme specific band that's ID greatly increases the odds that it really is lyme.

i had alos looked up some people saying that band 41 can be positive just from dental infections, specifically, spirochetes that are found in gum disease. I was thinking that makes sense since have had so much major issues with dental visits including fever spikes and major MCAS reasctions that caused my CFS and AI illnesses. Also read those spirochetes are stealth bacteria ans was getting all set to look into that...

but now am confused as to whether lyme or not. perhaps a very old infection? or perhaps a new infection with no time to form IgG antibodies? but igm was negative too...

to remind, i saw no tick but had been in tall grasse lots of small animals, plus had circular rash on chest/abdomen (not bullseye but first one circular rash, then two circular rashes. they came and went about 3 time and then wetn, They were preceded by a very large line that made me think i was getting shingles but a doc thought it was an arc - ie.. a big circle whre only one part is visible. Also had some bizarre symptoms 2 days before the rash including insomnia that put my usual insomnia to shame. so there was no sleep not sleepy not pain until 5 am when slept for one hour. And now i have a numb face.

probably lyme not major problem or even cause of the numb face but really i would like it if these chains were just a little easier to unravel. Give my mind and body a rest

anyway, anyone familar with interpreting immunoblot please feel free to chime in. They still hae a bit of my blood left; if i act really fast i may be able to have one of the igenex tests added - they have serum i should say, no whole blood. (note that pcr in urine 2 weeks prior was negative for lyme and for bartonella and the whole panel of tick borne stuff they look for.) If there's some other test i can add ASAP, please let me know that sooner rather than later before my serum is treated like the garbage it is.... thanks much.

i need a discussion forum for blood vessels pushing on nerves but alas these PR forums are really unique...
 

Garz

Senior Member
Messages
363
lyme can cause circular rashes that are not typical banded bulls-eye rash - or rashes at sites other than the bite location - and multiple round rashes on different parts of the body - see the various websites that list typical and atypical rashes.

the IgG being past infection and IgM recent - does not hold well for lyme disease either - for reasons to do with the biology of the spirochetes ( they change their outer surface proteins routinely)

from my reading antibodies typically take 4-6 weeks to reach detectable levels via ELISA / Immunoblot - so negative results inside this time are pretty meaningless and positive results unlikely.

ultimately no one knows the answer as to whether immunoblot is accurate in your case. overall the sensitivity and specificity leaves a lot to be desired - and there seems to be a huge gap between what the test manufacturers claim and what independent studies find - so something is defo off there.

if it were me
the symptoms, the circular rashes, and the suggestive indeterminate bands would raise my index of suspicion considerably.

i would probably move to treatment and see how i respond as another data point.
 
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frozenborderline

Senior Member
Messages
4,405
finally got the result of my IgeneX Lyme and Bartonella immunoblot results. Took 3 weeks.
For bartonella, everything was negative, igg and igm
For lyme, all igM was negative
Lyme is serious stuff but igenex is total bs. I'm really not trying to start any major argument here but just look up fallons research on it. He found high false positive rates and they aren't very transparent. I think it's a scam taking advantage of people with a disease doctors don't understand or treat well.
And this is coming from someone who has had Lyme and knows its devastating.
 

vision blue

Senior Member
Messages
1,891
@frozenborderline @hapl808

When i first heard of igenex years ago, those were exactly my concerns. I figured everyome would cone back positive cause it was what people eanted to hear etc

So i had a western blot done there a little but after doing one at a local lab.

The result cane back negative, just like the local lab, and the results were identical to the local lab western blot- babd 41 positive, nothing else

That greatly increased my opinion of them.

I now instead think the way they gouge people and make money is not by fake result reporting or improper use of cutoffs but instead spouting “new innovation” test after test. Get a negative reault? Well maybe you should test for antigen. Still negative? Well maybe test urine. Still negative? Try the 3 times urine collection. And on and on it goes.

But thats a different issue. Ditto the gouging on prices with very high markups.

So if used sensibly, i i find they are of value and have every reason to believe the data themselves are sound.

Interestingly, im still positive on babd 41 all this time later.

One thing that led me is to discussiobs that dental spirochetes can give band 41 positive. At first i tbought inwas on to something especially given dental reaction caused phase 1 of my illness - but then saw most of the “work” on the evils of dental spirochetes, some of which made news, was from one dentist who has already lost three malpractice suits. Talk about being suspicious...another blind alley. (One down a thousand more to go)
 
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frozenborderline

Senior Member
Messages
4,405
@frozenborderline

When i first heard of igenex years ago, those were exactly my concerns. I figured everyome would cone back positive cause it was what people eanted to hear etc

So i had a western blot done there a little but after doing one at a local lab.

The result cane back negative, just like the local lab, and the results were identical to the local lab western blot- babd 41 positive, nothing else

That greatly increased my opinion of them.

I now instead think the way they gouge people and make money is not by fake result reporting or improper use of cutoffs but instead spouting “new innovation” test after test. Get a negative reault? Well maybe you should test for antigen. Still negative? Well maybe test urine. Still negative? Try the 3 times urine collection. And on and on it goes.

But thats a different issue. Ditto the gouging on prices with very high markups.

So if used sensibly, i i find they are of value and have every reason to believe the data themselves are sound.

Interestingly, im still positive on babd 41 all this time later.

One thing that led me is to discussiobs that dental spirochetes can give band 41 positive. At first i tbought inwas on to something especially given dental reaction caused phase 1 of my illness - but then saw most of the “work” on the evils of dental spirochetes, some of which made news, was from one dentist who has already lost three malpractice suits. Talk about being suspicious...another blind alley. (One down a thousand more to go)
I don't see how one case can disprove a larger study , even if that is interesting. The larger study did tbe same thing but with more than one test. They found a significant false positive rate but it wasn't 100 percent, so having some people get correct test results doesn't prove that wrong. This is the Fallon study.

But I really can't be bothered to try and convince someone of that with very much effort. It's simple. They have the burden of proof that their tests are validated and they don't show that. The one study I know of shows they have High false positives. Maybe none of this is definitive but with that balance , I don't know why anyone would trust them.
 

vision blue

Senior Member
Messages
1,891
@frozenborderline
I will take a look at the study if i get a chance. Sometimes studies rebuking labs can be a hatchet job as they too have their odd motivations and conflict of interest.

Also, even accepted labs like labcorp may fail under the same scrutiny when given igenex . Read a study once that i believe is quest repeats trsting like in a chem panel because they will often get wildly different results, so sometime they will average , other times shrug abd pick one.

Also ever notice how labs play with cutoffs for normal results? OSo in a physicians office, they set the cutoffs low to intentionally ave more out of range tests whereas universityhospitals set them very high to have fewer out of range trsts. Lab corp and quest are in between.

Point is its not like everyone else is precise, a curate, and legit and igenex is the odd man out villain Instead, its much murkier. Labs have their strong points and their weak points. You can do one study on any of them and find some kind of inaccurate results

So for me one study is not automatic reason for crossing someone off the list even if impeccable study (which they rarely are) as then id have to cross off all labs. Instead, i try to find strengths and use tools as needed.

A high rate of false positives can be useful like if even igenex says i dont have lyme....
 
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frozenborderline

Senior Member
Messages
4,405
@frozenborderline
I will take a look at the study if i get a chance. Sometimes studies rebuking labs can be a hatchet job as they too have their odd motivations and conflict of interest.

Also, even accepted labs like labcorp may fail under the same scrutiny when given igenex . Read a study once that i believe is quest repeats trsting like in a chem panel because they will often get wildly different results, so sometime they will average , other times shrug abd pick one.

Also ever notice how labs play with cutoffs for normal results? OSo in a physicians office, they set the cutoffs low to intentionally ave more out of range tests whereas universityhospitals set them very high to have fewer out of range trsts. Lab corp and quest are in between.

Point is its not like everyone else is precise, a curate, and legit and igenex is the odd man out villain Instead, its much murkier. Labs have their strong points and their weak points. You can do one study on any of them and find some kind of inaccurate results

So for me one study is not automatic reason for crossing someone off the list even if impeccable study (which they rarely are) as then id have to cross off all labs. Instead, i try to find strengths and use tools as needed.
Here's the study https://pubmed.ncbi.nlm.nih.gov/25182244/

I don't really feel like any of the points you are making would personally make me comfortable with using igenex. Just bc other labs aren't perfect doesn't make their blatant fraud acceptable. But the study is there, and it's your choice. I want people to be informed on this. Maybe it won't be you. Maybe it will be someone else reading this thread that is considering igenex. I'm very skeptical of the mainstream narratives about lyme and have published lots of things with an open mind on the controversy since I'm affected by it , but there are a ton of predators and quacks in the field and it's not justified just bc there is a general lack of good treatments.
 
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