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rickettsia helvetica testing? "bitten" - Kris Newby

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Posted 1/17/2022 1:07 PM (GMT -5)
I just finished the book "bitten" by Kris Newby.

Has anyone here journeyed down this rabbit hole much? It seems the testing developed by Willy Burgdorfer largely exists only in europe? Fry labs might be the only option?

Great read by the way to anyone who hasn't checked it out..

Post Edited (loski01) : 1/17/2022 11:13:44 AM (GMT-7)

Posted 1/17/2022 1:59 PM (GMT -5)
From the way my NHS tests read - i think Helvetica may show up on general spotted fever group IFA antibody tests - as it seems this is a broad test

Rickettsia Results
Spotted Fever Group IgM (IFA) NOT detected
Spotted Fever Group IgG (IFA) NOT detected
Epidemic Typhus Group IgM (IFA) NOT detected
Epidemic Typhus Group IgG (IFA) NOT detected
O.tsutsugamushi IgG (EIA) NOT TESTED
O.tsutsugamushi IgM (EIA) Negative
Comment
No serological evidence of a Rickettsial (Spotted Fever or Epidemic
Typhus group) infection.
A number of variables including antibiotic treatment may affect the
detection of Rickettsial antibody during the first two weeks after the
onset of symptoms and an initial negative antibody titre should not be
used to exclude the diagnosis of Rickettsial disease. A second serum
should be obtained 1 to 2 weeks later to establish the diagnosis in
such cases.

these were done at the rare and imported pathogens lab in Portland Down UK - which is where all GP's in England send tests for anything unusual.

i have extensive travel history to far flung places so they were persuaded to run a bunch of tests for rickettsia, q-fever etc - no testing available for bartonella as far as i know though
Posted 1/17/2022 2:21 PM (GMT -5)
If it was an isolated infection perhaps that could be useful.

However the book lays out government research around compounding multiple infections in tics and Willy himself said they would combine a virus (I’m blanking at the moment which one) with other bacteria (I.E. one I mentioned) to block the antigen. The idea was you could infect an enemy population and make them severely sick, no one would know why. No antigen no positive test. I think he used some sort of fluorescence(I think that’s the name?) test during the early Lyme research in 1979.

Here’s an interesting article that summarizes the gist of what the book was about https://www.statnews.com/2016/10/12/swiss-agent-lyme-disease-mystery/

I will say from reading both.. the article attempts to play both sides with the mainstream doctor perspective as well and lapses in knowledge around chronic infections that current thought leaders are putting out.
Posted 1/17/2022 8:34 PM (GMT -5)
loski is this the part of the book you're referring too? Because that's very interesting indeed.

----------------------------------

I had no idea how to interpret that answer, so I continued, “What else?”

“Colorado tick fever virus, a mild disease. They found it produces a mild infection.”

If this virus was being developed as a bioweapon, it couldn’t have been harmless. Its initial symptoms included fever, chills, headache, pain behind the eyes, light sensitivity, muscle pain, generalized malaise, abdominal pain, hepatosplenomegaly (swollen liver and spleen), nausea and vomiting, and a flat or pimply rash. Complications could include meningitis, encephalitis, and hemorrhagic fever, but these were rare. Still, it didn’t sound “mild” to me.

I then asked him what the goal of these tests was.

“The virus lowers the antigen.”

Antigens are molecules on the outer surface of an invading microbe that the body recognizes as foreign, providing a signal that an invasion is under way. Theoretically, if a virulent bacteria’s genetic code were mixed with a virus that causes a mild infection, or if both microbes were loaded into a single tick, physicians wouldn’t recognize the physical symptoms of this novel infection, and it might not show up on standard antibody-based screening tests.

I checked with Willy to see if my theory was correct: “The virus lowers the antigen, so you can’t test for it?”

“That is it,” he said.

“So, are you saying, if you infected an enemy population, they wouldn’t be able to figure out what was wrong?”

“Yeah.”

----------------------------------
Posted 1/17/2022 9:57 PM (GMT -5)
RainyCloud - Yeah that was a lot of what I was mentioning! If you’re not going to get to the book at least read the above article, it encompasses some of the core focuses of the book as it was incorporated with it.

I couldn’t put the thing down though honestly. There’s a lot of unknown still around why these things suddenly became such a large problem and the evidence/questions laid out really could answer a lot of it.. or at least get us to a better place of understanding.
Posted 1/17/2022 9:59 PM (GMT -5)
Thanks Loski, I actually have the book but am too fatigued to read it. Maybe one day when I have some relief from this fatigue. I've read parts though and I agree it's so hard to put away once you start reading.
Posted 1/18/2022 5:35 AM (GMT -5)
I read this book awhile back, it is "understandably murky" if that makes sense with this day and age we live in.

It seems urgent that a doctor should understand a standard blood test doesn't always reveal the extent of chronic disease, and all made worse if these were genetically-engineered to be stealthy and virulent in the first place. So now literally almost every first-line standard test LabCorp/Quest and similar (whenever a patient says to most doctors "I think I have Lyme Disease" will be a waste of money) so many will not even let the patient explain why the test will almost always be negative, and rarely ever get diagnosis or treatment...it's beyond frustrating.

It is a scary thought. And not all doctors would believe you, as their livelihoods depend on maintaining the status quo regardless of this fact...

And about testing for Rickettsia and the dozens (hundreds?) of other tick-borne/vector borne illness... I still don't know what the best/top labs are now to at least narrow down the co-infections or try to anyway...when I was cobbling together for the IgeneX test (thanks to a non-profit's help) I looked at MDLabs and considered StonyBrook, and there's Armin Labs and Galaxy. I like to know what the Cadillac of choices are, even if I couldn't afford them.
Posted 1/18/2022 6:16 AM (GMT -5)
thanks for the extra input - i was aware of a lot of cross reactivity going on between members of the proteobacteria group and each other - and lyme and EBV - but hadn't come across this masking effect

ref Cadillac of labs
i have done quite a bit of research into all the available labs for lyme and co-infections
the bottom line is the test technology itself is not yet on a par with things like HIV testing anywhere yet - so there is no such thing as a really good test for lyme or most of the co-infections yet

the picture varies by pathogen also
for lyme

the following are about as good as it gets
-Igenx ( many many LLMD's use them)
-Stony brook ( some top LLMD's use and vouch for them)
-Armin ( the best in Europe in my research )
i would still use multiple tests for lyme with each lab as sensitivity is poor - and include an immunoblot/western blot and broader interpretation to help with the sensitivity issue

there are a bunch of other labs that use technology that is not proven and is likley more of a random number generator - or giving LLMD's the answer they are looking for based on clinic symptoms ( confirmation bias at work ) so we defo need to be wary.

for co-infections is still far from clear:

Babesia - testing in general is far from ideal - again sensitivity issues - and species specificity issues remain unaddressed by most / all labs
i just noticed T-Labs have a fluorescent probe for Babesia now so i would be interested in the specificity for that as there are literally hundreds of Babesia strains out there and most labs only test for 2.
direct microscopy is broad specificity - but the scientific references show that in chronic infections it may be only 1 cell per 1000 that contains a Babesia organism - so that would take some incredible dedication along with a bit of luck to spot. i doubt many lab technicians will be up to it.

bartonella testing is a large topic in itself
the short version is galaxy is run by the best researcher ( ed Breischwerds) and lab guru ( Maggi ) and bart clinician ( Robert Mozayeni ) in the business - don't shoot me for my spelling - so i would rate them above all other offerings
the only issue is price - their triple draw digital droplet ePCR is 1600usd per run - but they tell me they are spearheading technology at the moment and it is their intention and expectation that prices will come down as the technology matures
t-labs is also very good - different technology - specificity ( broad detection of all species ) looks good but is not yet proven - but price is similar

next best is the multi-species bart western blot from igenx - decent value - on the plus side it is multi-species - but would expect less sensitivity than either of the above based on published research that show 50% of chronic bart patients are seronegative via conventional serology ( immuno-suppressive effects of bart infection ) - which is likely only partially offset by the fact that it uses multiple antigens

the rest of co-infection testing is mainly standard serology - which is very limited
or simple PCR - which is also problematic

in general just be aware that its the wild west out there - as the current laws in most countries and certainly in the USA - allow tests to be marketed by anyone who wishes after only internal evaluations by the labs themselves done with contrived samples.
no real world double blind testing on patients - or third party validation is required.
as a result patients and their LLMD's have no way of knowing if it does what it says on the tin.
clearly this is a situation of "buyer beware".
Posted 1/18/2022 11:09 AM (GMT -5)
Rainy - Hey one page today is closer than you were yesterday! I know the feeling though. I’ve been feeling really decent if I’m not pushing myself much. I actually knocked this thing out in two days, which in hindsight I couldn’t even remember a book two years ago if I found the energy to read it!

Borrelio- Exactly. A scientific discovery like lyme shouldn’t have so much mystery surrounding it. That’s why I got so caught on it. Like how did all of this just happen.. I believe the house snuck in funding within the last year or so to look into pentagon activity around this. Unsure where that sits. I had been tested for RMSF on MDL. Neg igg and igm.

Garzie- I see Dr. A.C. in a couple days. I’ll get her input in report back. I’ve certainly been through my fair share of labs. I’ve long considered getting a microscope to do my own blood analysis but learned that Rickettsia is often too small to see.. I’m going to find again how Willy did it and see how hard it would be to do on myself.
Posted 1/18/2022 11:35 AM (GMT -5)
worth a go with a microscope Loski

i was also told bart is too small to see also - but what i found was while individually that may well be the case - that's not really how they often manifest and so that this is not the whole story - and i am finding microscopy useful and relatively inexpensive vs independent lab testing.

i am pretty sure the rickettsia can be stained also - probably silver based stains - maybe giemsa
if they are like Bart ( they are related) they may multiply inside vacuoles inside cells which are much larger than the organism itself and so much easier to spot

hardest part is teaching yourself how to interpret the images
Posted 1/18/2022 4:37 PM (GMT -5)
Garzie I’ve done a live analysis with an ND early on so I have some fundamental knowledge of basic analysis. Staining is intimidating to me but it’s probably the lack of knowledge not that it’s insanely difficult.. edit - evidently it’s something called darkfield view that picks them up. Unsure if a staining is done prior to.. I don’t think it is.

What max magnification do you feel is adequate? I’m pricing some with ranges
between 1000-1500x. It seems anything over 1500 is overkill. Could probably get away with 1000x max range?

Have you been using it to assess treatment efficacy?

I was thinking about doing the fry labs test but I agree in terms of cost saving. I could probably learn to do this myself for less than the cost of the test. And then I’d actually have the skills to help others in the future 🤔

Post Edited (loski01) : 1/18/2022 2:50:58 PM (GMT-7)

Posted 1/18/2022 5:01 PM (GMT -5)

loski01 said...
Rainy - Hey one page today is closer than you were yesterday!

Thank you for this loski!
Posted 1/19/2022 6:39 AM (GMT -5)
loski
1000x is sufficient and in any case the 1500 and 2000x are done with higher power eyepieces and do not bring any better resolution - issue being that at 1000x the wavelength of light is the limitation rather than the magnification number

the quality of lenses makes a difference - people do have success with the relatively inexpensive Amscope microscopes and similar brands - so you do not need Nikon, Leica or Zeiss

bright field is used with staining rather than darkfield

darkfield usually used for live blood work looking for live spirochetes as a way of increasing contrast with very small diameter objects that would otherwise be hard to spot via brightfield ( its a technique that uses the refractive index of the long thin spirochete to scatter light and therefore show up in oblique lighting - when it would be next to invisible if lit purely from below ) - live spirochete swim with a rapid corkscrew action making them pulse in the light - and hence easy to spot this way - i don't see how it would be of use for rickettsia though

staining is not daunting - just some prep and then follow some simple steps - if you can cook you can do it

learning to interpret the slides is much more of an undertaking, no matter what technique you are doing
most people seem to fall down here - either assuming everything they see are microbes - or not being able to make sense of anything and giving up. its a learning curve as is anything else - but with patience and practice you should be able to do better than the average lab tech - simply becuase you are motivated and have more time than they do for each slide. You can do 10 slides - not 1 or 2 - and spend 30mins on each - no 5-10 as a commercial lab might do.

ref equipment - and training - the babesia thread has all the things you need to get started

i plan to use it to track progress - as i hope it will provide one of the few concrete measurables i have been able to find with this illness - eg amount of biofilm in my bloods( was shocked at how much was there on my initial trials)

I wanted to give the treatment trial with proteolytic enzymes around 1 month before testing again to ensure it had long enough to have some effect - and i have not been able to increase dose as quickly as i had wanted due to herx like symptoms occurring as i stepped up to even 1 capsule per day pf bromelain ( one of the milder proteolytics )
Posted 1/19/2022 3:57 PM (GMT -5)
Garzie - I referenced the book today, Willy would stain and also use a dark field view concurrently to find Rickettsia helvetica. Under high magnification he found they existed in two forms ("two cells fused together as well as a sausage rod like form). He found this particular Rickettsia differed from the rest because it didn't exist in their own "species free niches within a tick" that happens over evolution.. but they were everywhere, in all parts of the tic (reproductive organs and all) meaning it displaced the thinking that only one type of a bacteria could survive in a particular part of a tic and that it had a higher likelihood of being spread more rapidly in the ecosytem through tic eggs. (earlier parts of the book detail gov research for increasing the spread of a pathogen like this).

This was discovered in Dec of 1978.... coincidence?

He also developed a fluorescent antibody test to use following this. He then identified the antigen it had (antigen C9P9) and mass produced it in a flask with growth medium. He smeared the antigen onto a slide and then added a drop of blood from tic/animal/person being studied. "If the animal had recently been exposed to the germ, there would be antibodies that recognized C9P9 as an invader, and the dyed antibodies attached to the C9P9 antigens as an invader, and the dyed antibodies attached to the C9P9 antigens would glow like little neon lights under the ultraviolet illumination" indicating a positive result.

"On 4/12/1979 he quietly began testing the early lyme patients in Connecticut(two years pre discovery of "lyme"). The blood samples reacted strongly to only the swiss agent antigen (early name for Rickettsia helvetica)"

In march of 1980 will wrote to his colleagues helping with the investigation that "most specimens, with a few exceptions, reacted only against the antigens prepared from the Swiss agent". He was preparing a scientific publication on this. In April something changed, and the swiss agent was never spoke of again. In the midst of this breakout on the east coast the NIH sent him on a paid lengthy trip to Switzerland to continue unrelated studies there, he was our top tick scientist in the midst of a tick disease outbreak and they just took him off the case..! Only to have him come back and say he discovered this new borrelia as the cause in 81-82.. with no mention or continuation around this Rickettsia.. Which upon dna analysis it was found to contain genetics from an "old world" rickettsia as well as a newer species, both of which didn't exist around each other in known history.. "it's a near impossibility" that it could've been formed naturally..

Crazy huh?

If you're interested.. I'd love to work together around finding how we can run these test ourselves and see what results we find.

"I wondered why somebody didn't do something. Then I realized that I am somebody" - Will Burgforfer note on scientific documents found following his passing

Post Edited (loski01) : 1/19/2022 3:45:23 PM (GMT-7)

Posted 1/20/2022 1:11 PM (GMT -5)
happy to collaborate Loski - but immunofluorescent dyes seem to be several steps past what can be achieved in a back bedroom at home.

as far as i understand it they first prepare some kind of designer molecule that binds to the DNA of the target organism - so they need to find a region of its DNA that is common to all strains - and yet different to all other organisms including the host - and then attach a fluorescent marker to the end of that molecule so that when introduced to a medium with the target organism in it the molecule will attach to only its target DNA and then when the correct wavelength of light is applied this will fluoresce revealing the location of the organisms - so that needs special microscopes with the ability to control the wavelength of light being applied while also illuminating the object in the visible spectrum - ie multiple light sources.

I'm not saying it cannot be done - just that its several orders of greater complexity beyond staining slides and looking at them with conventional microscopy - which is already at a level where many people struggle at home.

if you make any progress in that direction of find DIY methods of immunofluorescence staining i would be interested to hear about it.

ref willy B - its a long time ago - nearly 40 years - and in the meantime there has been so much misinformation and conspiracy theories that i am not sure how much faith we can put in anything that is written on the subject.
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