What test next?

So Im thinking of having one more set of tests done since Ive had opposing test results come back. Not sure whats false negative or false positive at this point, or if this truly is Lyme. Want to go thru Igenex this time. I see they have 3 or 4 different tests for each coinfection wondering which one you might suggest is my best option?

Thru my GP Ive had an ELISA come back negative.
Bartonella come back Negative

WB testing thru a Lyme doc had a few bands come up positive for Lyme IgG (MDL Labs) negative for IgM
Real Time PCR tests all negative Lyme & coinfections (MDL Labs)

Negative test results from DNA Connexions

What Igenex test would you suggest I do at this point?

I suggest the IGX Spot and the Immunoblot both for Lyme.

As far as coinfections - not sure of which ones to suggest.

Girlie said...
I suggest the IGX Spot and the Immunoblot both for Lyme.

As far as coinfections - not sure of which ones to suggest.

Thanks Girlie. I will opt for this one more test before facing the music. Also going to discuss the WB results further with my alternative doc. He left it as a possibility that these symptoms are Lyme, but because I was responding to the MTHFR treatment to continue that for another few weeks and see how I feel.

they key thing to consider in lyme testing is the generally poor sensitivity / but high specificity

this means you cannot / should not weigh a negative test and a positive test the same way
ie "I have a positive test and a negative test so now there is no clarity on if i have Lyme or not "

in lyme the chances of false negatives are very high ( in most diseases diagnostic testing its very low - less than 10 % - but in Lyme its more like 50-80% deepening on exactly what paper you reference
so in Lyme testing) - so lots of false negatives are the norm -

on the other hand in lyme false positives - are rare - more like 10%
so a positive result - is v unlikely to be a false positive

because of this 5:1 or even 8:1 ratio of false negatives to false positives - any positive result is highly suggestive of lyme no matter what other negative tests you have - yet i see thsi same type of confusion a lot.

a good LLMD should be able to interpret this without any difficulty - its just basic test performance - or "diagnostic value" calculations - lyme testing 101

sensitivity or serological testing for chronic bartonella is typically something like 25% - even the best published test out there - digital droplet qPCR with culture from galaxy only claims 49% - so chances of a positive test in chronically infected patients is small and negatives tests even more meaningless in terms of diagnostic value than Lyme tests

I appreciate this informative reply. My next question would be do you think that having antibodies (positive IgG) automatically means a current infection? I am responding well to treating a (recently diagnosed) MTHFR thing with methylated B vitamins. So I am basically trying to treat one thing before another. Symptoms arent gone 100% by any means, but some have subsided completely at the same time.

Also the ECG test today was no fun. The doctor doing the test has to send a report to my neurologist but did say that things looked fine from her perspective too. Tested both sides, arms and legs.

Garzie said...
they key thing to consider in lyme testing is the generally poor sensitivity / but high specificity

this means you cannot / should not weigh a negative test and a positive test the same way
ie "I have a positive test and a negative test so now there is no clarity on if i have Lyme or not "

in lyme the chances of false negatives are very high ( in most diseases diagnostic testing its very low - less than 10 % - but in Lyme its more like 50-80% deepening on exactly what paper you reference
so in Lyme testing) - so lots of false negatives are the norm -

on the other hand in lyme false positives - are rare - more like 10%
so a positive result - is v unlikely to be a false positive

because of this 5:1 or even 8:1 ratio of false negatives to false positives - any positive result is highly suggestive of lyme no matter what other negative tests you have - yet i see thsi same type of confusion a lot.

a good LLMD should be able to interpret this without any difficulty - its just basic test performance - or "diagnostic value" calculations - lyme testing 101

sensitivity or serological testing for chronic bartonella is typically something like 25% - even the best published test out there - digital droplet qPCR with culture from galaxy only claims 49% - so chances of a positive test in chronically infected patients is small and negatives tests even more meaningless in terms of diagnostic value than Lyme tests

one of the main problems with serology based tests for lyme - is that you are measuring a secondary effect - ie "how is the patients immune system behaving"

not a direct test "can we see the bacteria"

in lyme - there are countless studies showing that the very thing you are measuring ( how the patients immune system is responding) is itself disrupted by the lyme infection - and as a result it no longer functions the way its expected to - and does not produce the pattern of IgG or IgM antibodies that are expected in most* other infections.

in all other disciplines this would be classed as crazy logic and thrown out the window
in lyme testing there are few alternatives - and so we are kinda stuck with it - even though it is flawed.

for example - there are papers finding that around 20% of patients with confirmed lyme infection by culture ( gold standard test method but rarely used) NEVER produce ANY detectable anti-lyme antibodies at all. so this makes it clear that lyme interferes with normal expected antibody production.

more often with lyme disease - and what you will often see if you read other peoples accounts here
- is there is general poor sensitivity of basic C6 ELISA tests ( this is the general first line test used in many countries - and looks for only one antibody) - so often just a negative result
- and on western blots - some kind of random selection of a few IgG and IgM antibodies or a few indeterminate - rarely the full suite.

the main reason for this is the immune disruption mentioned above

however, borrelia also have a key feature v few other microbes have - in that they change the proteins expressed on their outer surface regularly - it is these outer surface proteins that the immune system reacts to and makes antibodies to - so this means the immune system has to keep relearning how to recognise them and then make new antibodies to the latest outer surface protein - this is the explanation for reoccurring IgM antibodies in chronic lyme infection

there is ongoing confusion where people, including doctors, apply general rules of thumb learned from testing other simpler organisms to borrelia - which have altogether different biology and so those explanations do not fit borrelial infections well at all.

*I say most - as in many chronic bacterial infections - especially those in the co-infection group - expected antibodies are often not present after 6 months - the mechanisms for this are also not clear but likely due to some immune evasion or immune suppressive effects the organisms have developed over the millennia to aid their chronic infection survival strategy - ie killing the host is no good for survival - and getting mopped up by the host immune system is no good either - so they have to find something in between. that in between way involves some manipulation of the immune system by the microbe.

Thanks for your response.

I took Doxy for about 10 days before finding out about this MTHFR gene thing I have and so started treating that with Methylated B vitamins. I saw improvement in my symptoms and learned that since antibiotics can ruin the gut, it could be causing even further issues taking Doxy and trying to get Bs in my system. So I stopped the Doxy about a month ago (after 10 days) and have been improving on most original symptoms since then. But last 2 weeks or so noticed some new issues as well. Mostly rash/hives that come and go. Im treating them successfully with Zyrtec (ive had these on and off for 2 years but now they are back). A newer symptom is arthritis feeling in my hands mostly in the morning, and lastly an on/off tinnitus in my ears with a buzz/low hum as well (also have had this symptom for about a year on and off).

But now last 2 nights I started having sleep issues again. Sleeping thru mostly ok but waking up in a panic again not knowing where I am for a second or two. Ive had this randomly for several years as well, but not as often as Ive had these last few months.

So other than some methylated B supplements and C vitamin with Quercetin Im currently taking nothing else.

orbitingaround said...
Rider400:

I only have IgG bands on my Western Blot (no IgM), 2 are Lyme specific, and I very obviously have an active infection. I herx like mad with Lyme and Bartonella specific herbs. I also tested positive for Lyme and Bart through Armin.

But yes, it is possible to have only IgG bands and have an active infection. This is why LLMD's diagnose based on symptoms and health history. Do you know what bands you have?

Are you taking any herbs or antibiotics? That can help get a correct test result.