Blood VEGF Testing

What kinds of results have members had when being tested for VEGF levels? I usually test out-of-range low. I'm curious about others. Obviously if you've bart you may test elevated.

Do you test in range?
Out of range high?
Out of range low?
Never been VEGF tested?

High vs low values suggest different potential implications.

Thanks in advance.

Post Edited (duncan) : 2/22/2023 7:31:58 AM (GMT-8)

Oh, what a cool thought. That' you know this is very cool.

I worry about low VEGF values because of the correlation with neurodegeneration.

My thought was perhaps low VEGF levels could be a marker of sorts for "brain fog" that we face and people with LC or ME/CFS etc. I don't like to write "brain fog" because I think it doesn't do justice to what we experience, but we all know what it means so excuse my short cut.

But I am only n=1..

Incidentally, I used to test positive for bart but haven't in several years. I'd be willing to bet that while I was testing bart positive, my infectious disease guy did not look at VEGF.

Post Edited (duncan) : 2/22/2023 8:03:48 AM (GMT-8)

Not to be overly pessimistic but I think if you've any combination of the three B's, there is no easy fix. I know my symptoms could be attributed to babs or bart or Lyme, or any combination..

The thing about VEGF is that it may speak to cognitive decline when low, at least according to some papers. We are what we think. Effect what we think and we as individuals may be redefined. Mostly to measure cognition we use psych test that involve cognition, but those cognitive tests e.g. IQ etc, are blunt instruments and not as overt as I'd prefer - overt as in a biomarker.

I don't think we are checking VEGF in our communities as much as perhaps it is warranted. This is worrisome to me.

Post Edited (duncan) : 2/22/2023 8:43:53 AM (GMT-8)

"....reduced VEGF levels cause neurodegeneration in part by impairing neural tissue perfusion..." This from a study entitled "VEGF; a critical player in neural degeneration" in The Journal of Critical Investigation in 2004.

So you're spot on Garzie. And we've clues dating back two decades or so..

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC300888/

I hear you about bart. A tropism for brain tissue is shared by a few TBD's. I wished they'd parse down to parts of the brain. I fear it's indiscriminate, though, and more or less serendipity.

My infectious disease doctor checks my VEGF values at least once a year because he is wary about conventional bart testing. His logic, as well as others like him, is that high VEGF may be suggestive of persistent bart infection despite antibiotics.

Hey, I see you were C6 positive. I always tested C6 positive. Was very surprised when they suspended marketing.

Duncani positive, too. I am B . microtoi positive via antibody testing, i.e., reactivated.

I'd be interested in what your VEGF values would be now, years later.

We are acute-centric as a society. It's shameful that we remain so considering the chronicity that is evident if we just open our eyes.

So let them get off their backsides and take another long hard look ar IgG values, and do some serious recalibrating.

Thing is, not only are we battling state agencies and insurance concerns, but patents and medical legacy.

ETA: Rickettsia? Including Helvetica?

Post Edited (duncan) : 2/22/2023 12:33:49 PM (GMT-8)

duncan said...
My infectious disease doctor checks my VEGF values at least once a year because he is wary about conventional bart testing. His logic, as well as others like him, is that high VEGF may be suggestive of persistent bart infection despite antibiotics.

Hey, I see you were C6 positive. I always tested C6 positive. Was very surprised when they suspended marketing.

Duncani positive, too. I am B . microtoi positive via antibody testing, i.e., reactivated.

I'd be interested in what your VEGF values would be now, years later.

Yeah c6 igenix is the only one that’s ever caught it for me. MDL’s c6 did not.

Yes a duncani positive on the eastern side of US. Explain that CDC lol

loski01, The C6 peptide test should have worked (or not) regardless of where you got it. I wonder if Immunetics made IGenex's for them? I cannot recall. But it's kinda like getting a B31 kit - same logic regardless of source. You may just not have tested positive on a given day. And yes, duncani has been in Eastern US for a while. I hope even the CDC would admit to that. Pretty sure it's in a couple NIH studies....

Garzie, I bet the EIS had all kinds of meltdowns over at least a third babs species. I suspect it's only a function of time - and attention paid - before more pop up.

I am confused. The C6 comes from VlsE, It's just that peptide from that broader protein. Right? So now, for example, the MTTT players are in part looking at entire VlsE vs just the C6 snippet, like before circa 2020.

Bad brain day, I'm sorry. Can't figure out how you'd get two different responses on same day, unless a shipping snafu and delay in processing one. Or maybe you're right and the two C6's were different.

Who actually made C6's besides immunteics? I;m sorry I cannot recall..

Garzie, didn't it used to be in the UK that the NHS only tested with the C6? Do you recall who made it? Am I right in assuming the NHS no longer uses the C6?

Post Edited (duncan) : 2/23/2023 11:29:29 AM (GMT-8)

duncan said...
I am confused. The C6 comes from VlsE, It's just that peptide from that broader protein. Right? So now, for example, the MTTT players are in part looking at entire VlsE vs just the C6 snippet, like before circa 2020.

Bad brain day, I'm sorry. Can't figure out how you'd get two different responses on same day, unless a shipping snafu and delay in processing one. Or maybe you're right and the two C6's were different.

Who actually made C6's besides immunteics? I;m sorry I cannot recall..

Garzie, didn't it used to be in the UK that the NHS only tested with the C6? Do you recall who made it? Am I right in assuming the NHS no longer uses the C6?

I’m not familiar with the specifics behind this test or why it happened. Just that it did.

nope - to my knowledge they still use the C6 here

they didn't use the westernblot / immunoblot unless the C6 was positive

backwards logic as we all know - as the WB is the more sensitive test - so should have been the first stage of any 2 tier test schedule

looks like they are still using C6 at local hospitals - then doing some form of MTTT at the RIPL

see here https://www.gov.uk/guidance/lyme-borreliosis-service#:~:text=diagnostic%20services,-first%20line%20laboratory&text=lyme%20disease%20is%20usually%20diagnosed,burgdorferi%20antigens%20%e2%80%93%20vlse1%20and%20pepc10.
(not sure if this link will work - sometimes the forum software scrambles links with lots of "%20" in them)

i tested negative for the NHS C6 and western blot
positive for B.Garinii via arminlabs

something like 40% of ticks tested in Europe have B. Garinii - 30% B. Alfzelii and 30% Burgdorferi

i did a deep dive into the papers on the surface antigens of these other species - and it was clear that most of the European strains don't have the same protein sequences as Burgdorferi in its surface proteins where it has the C6 region

so we in Europe use a test based on the B31 strain - (that was from a tick found on island off the USA that had never infected a human)- even though 70% of ticks in Europe have borrelia that will not produce the protein it looks for - its Genius!

its almost as if the test regime was designed to find as little lyme a possible

really i think they just copy the CDC - as they are Gov employees - and the default behaviour is to do what is most easily justifiable for them - rather than what is right
"we did it this way because that's what the CDC says" is the easiest course of action to defend

the test that i did test positive with used whole lysate of B. Garinii

tickplex from Finland developed by one of the universities there with funding from the Finnish government who seem to be little more independent thinking

looks a bit mixed up to me

like they have just let the local GP's carry on and order C6 ELISA from their local hospitals ( this is how it used to work) and then if that was positive - they would send blood to the central specialist diseases lab at RIPL for Western Blot

but now it seems RIPL do instead some other MTTT

honestly over here they all have their head in the sand

i had a long conversation with my GP about Lyme - and how most people him included thinks that it is only prevalent in Scotland and the Lake District ( an area up north with lots of hills and deer)
but it turns out a third of all positive cases (official cases on the NHS - public health England ) were in his area in the south west of England - he did not know and did not seem to believe it.

or how can it be that he UK has 1/10th of the incidence for the rest of Europe when we share flora and fauna and even migrating birds that carry infected ticks with them to and from Europe....

or even that one of the universities found 7% of all ticks collected in the park in the centre of our nearest town were infected with Lyme

none of it went in - they are indoctrinated into thinking is a very rare disease and nothing will shift them from that view

in any case - he said there is no one in the NHS he can refer me to who can help

even the good ones here just want you out of the office ASAP as you are a problem for them as they do not know what to do with - and they fear recriminations if they treat you - and also if they dont treat you

basically - its a shambles

Garzie, I sympathize with you. I've encountered that odd UK.....hmmm, what's the right words...arrogant ignorance? resentment? hostility??.... toward Lyme. I believe it's rooted back in the early 90's when the CDC purportedly was exercising a sort of pre-emptive influence anywhere it could outside the US.

It's certainly alive and well in the US. It's even where I live, where about 50% of ticks carry Bb, and close to half of those carry multiple pathogens. Yet pick a GP here and not only will they likely be ignorant, but there's a thinly veiled resentment or distrust of you if you volunteer you've persistent Lyme. Forget about bart or babs.

This drifting of testing protocols is worrisome. You know they don't want the Western Blot; too much insight to be had. The MTTT options...if you've the inclination, check out their pedigrees, how much they've been proven - or not.

Bailey, so what are your next steps? For me, it seems obvious to take my VEGF results to a neuro, but in an era when "functional" this or that is willfully embraced by neurologists, I am highly distrustful of that discipline.

Post Edited (duncan) : 2/24/2023 2:55:16 AM (GMT-8)