ID appt. for B. Duncani

Decided to follow up on my IGG + from the Fall and found a doc who would see me.

She ordered another smear with staining (last was neg) and a B. Duncani PCR through UPMC (didn't know this existed through a major network). Also added that she wasn't very confident this was going to come back + but did note my IGG was up from 2021 @ 160 to 254 in 2023.

Was told to schedule in 2 weeks to review labs. She gave me the option to still do a two week trial treatment regardless of results if I chose to - but warned of side effects from RX. She also added if this is what's causing my remaining symptoms I should start to feel better within that 2 week trial (being atovaquone and Azithromycin or Clindamycin and Quinine).

Thoughts?

i think Rainy's point is fair

but i would also say that i think a 2 weeks trial is a bit optimistic for seeing significant changes - if a person has been sick for many years

some people may be lucky enough to respond is some obvious way in 2 weeks - but i am not sure we could expect the majority to do so -

for example - in my own trials often result in only 1-2% improvement in a month - even if i am on the right track
and to detect even that 1-2% reliably i have to go to some lengths to do rigorous symptom and metrics tracking

other thoughs
PCR if it comes back positive really should be better than 99% specific - ie they would have to mix up your sample with someone else for it to be positive when you are not actually infected.
so if that does come back positive you can effectively rule out a false positive and focus on treatment

treatment options are varied
i believe Babesia can be very difficult to treat if present - especially if the hosts immune system is compromised by other infections or co-morbidities
there seems to be some variability in the ease of treatment based on species
Duncani is in the harder to treat group
but we don't know to what degree other species are triggering the Duncani test
it seems to be more the case that the test is designed for Duncani - but other species can trigger it on occasion then which patients get positive results depends on which species they have and what antibodies they make ( hosts make many antibodies to each pathogen and some cross react over species boundaries )
hopefully the PCR - if positive will give species information

if it is positive and treatment is then designed to be targeted at it longer term - i would certainly look to add lumbrokinase as an important anti-fibrin element - and other antimalaria alongside the standard malaria protocol of atovaquone and an antibiotic as it seems once these difficult to treat versions are chronic its necessary to hit them with multiple agents to lower the microbial load - Coartem, other forms of artemisinin - cryptolepis etc are all possible elements

Tafenoquine is also showing promise

i hope its of some help

Dr Lindner addressed ILADS on the use of Tafenoquine for babesia last year i think

more info here

https://www.hormonerestoration.com/chronic-babesiosis.html

i think the logic is sound Loski

i believe cryptolepis is pretty potent - based on my own experience - probably the most potent herb i have tried
( i have tried many)
its hard to know if the herbs alone - even in combination - would be enough - but definitely a worthwhile weapon in the arsenal

i agree on the issue with ID doctors - typically very blinkered when it comes to stealth infections - the test is reliable and a quick course is all you need - and if that doesn't fix it - then they often become reluctant - a positive PCR should help

the PCR technology itself should have a low false negative rate - but it will depend on sampling issues - for instance - is there any actual babesia DNA in the 0.5ml sample put in the machine - so while the machine can in theory reliably multiply up and count any babesia dna put into it - if none is put in - no amount of multiplying and counting will be of any use.

its easy to assume that if we are infected - then there will be organisms in the blood - but in chronic infections this is often not the case
for example PCR tests of blood are positive only around 50% of the time in people infected with lyme - proven by culture - this is because the spirochete prefers to be in the tissues - not the blood.

bartonella is similar - in fact people with high antibodies are usually negative via PCR tests - so the results are essentially the opposite of what we would otherwise expect - the explanation seems to be that the antibodies effectively clean the blood - meaning no bart in the sample and a negative PCR - but bart in the endothelial cells and liver, other tissues - again something like 50-70% of the time PCR will be negative in chronic bart infections
this is why Galaxy had to develop a culture plus PCR test with 3 separate blood draws to try to reliably collect a sample with bart in it in most patients.

similarly babesia - at least duncani and the others in its group - is believed to sequester - in micro vessels and capillaries - not flow round in general circulation most of the time.
in this way it doesn't get cleaned out by the spleen. (people without spleens can get crazy high parasitaemia for this reason)
of course not every single organism is perfectly sequestered all of the time - so some will always be in circulation - but enough to reliably be detected by PCR? - again its not certain
PCR is good at detecting very low levels of things - but i wouldn't like to place a number on it
maybe 50% sensitivity is a ball park
ultimately i dont think a negative result should be fully relied on

there is also some detailed stuff about exactly what kind of PCR test do they do - what target marker sequence do they use - is that exact sequence definitely shared with all of the species of interest - i believe there are gaps in our knowledge here.

so ultimately - i would say safer to assume -
specificity ( probability positive test result is true positive ) 99%
but
sensitivity ( probability a negative test is a true negative ) more like very rough numbers 50%

unfortunately this is means a negative result doesn't actually have any diagnostic value - though i doubt the average ID doc will see it that way

i hope its of some help

all the best

I had no clue Dr. Lindner’s daughter had died. That’s rough stuff..

So he’s saying from PA tick lab research 20% on average of ticks have B. Odocoilei? And if you get Lyme there’s a 1/3 chance you were also exposed. But we have no reliable method to look for it? I’m in PA so this hits home for me. I checked PA tick lab research but no publicly available data to confirm this that I saw. Any way to double check this?

I did find this study on wild elk in PA which is rather disturbing. 19% were PCR positive for Odocoilei (with no other babesia species found). None of these elk showed outward signs of sickness. All blood smears were negative. But again 98-100% DNA match for Odocoilei on the PCR. Smoking gun for persisting low level Parasitemia that can’t be seen on a smear but is definitively there. Study also mentions 100% positive rate on a 32 elk sample size in NH.

This is baffling..

https://www.researchgate.net/publication/351999419_Surveillance_for_Babesia_odocoilei_in_Hunter-Harvested_Wild-Elk_Cervus_elaphus_canadensis_from_Pennsylvania_USA_2016-2017/fulltext/60b4e220299bf1f6d58aef82/Surveillance-for-Babesia-odocoilei-in-Hunter-Harvested-Wild-Elk-Cervus-elaphus-canadensis-from-Pennsylvania-USA-2016-2017.pdf?origin=publication_detail&_tp=eyJjb250ZXh0Ijp7ImZpcnN0UGFnZSI6InB1YmxpY2F0aW9uIiwicGFnZSI6InB1YmxpY2F0aW9uRG93bmxvYWQiLCJwcmV2aW91c1BhZ2UiOiJwdWJsaWNhdGlvbiJ9fQ

I had emailed with PA Tick Research lab today and they said "unfortunately, at this time we do not have available data to share" when asked about % rates of infections per ticks tested. They do have data on their website showing % of ticks with 1-5 infections but they don't specify which infections. The doctor mentioned by Dr. Lindner has held the relevant position there. Anywhere else with data available around that besides the Elk study I mentioned?

This makes me upset, how can we ever begin to prevent the future generations from going through this all of this misery, if they won't even share the data on how many ticks there are currently infected with particular strains?

Anyway, I'll spare you guys a rant, I'm sure we're on the same page here already.

I did some digging though, it's not for PA, but just in case it is of any help:

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc7598643/

"For ticks at each site, the prevalence of B. odocoilei was 16.67% in Ontario and 8.89% and 5.26% in Québec. Of 31 live, engorged I. scapularis larvae and nymphs held to molt, 25 ticks completed the molt; five of these molted ticks were positive for B. odocoilei."

https://academic.oup.com/jme/article/58/6/2484/6262557?login=false

"The maximum likelihood estimation for overall larval infection prevalence was 7.8% "

https://www.sciencedirect.com/science/article/pii/s1877959x23001723 (United Kingdom)

"Of 3912 nymphs tested, Babesia spp. were detected in 15, giving an overall prevalence of 0.38% [95%CI: 0.21–0.63%]. A number of Babesia species were identified including B. venatorum (n = 9), B. divergens/capreoli (n = 5) and B. odocoilei-like species (n = 1). "

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3822370/

Three of these eight samples were successfully sequenced at the Yale Center for Genome Analysis and were confirmed positive for B. odocoilei DNA, but not for B. microti DNA. The BabMq18 qPCR assay was used to test all eight samples containing B. odocoilei and no DNA was amplified.

https://www.frontiersin.org/articles/10.3389/fpara.2023.1272790/full

Of 126 I. scapularis nymphs, five tested positive for B. odocoilei, with one nymph at Site 2, Site 10, and Site 11 and two nymphs at Site 13

[..]

Local infection prevalence in questing I. scapularis ranged from 0% to 14.3% for B. odocoilei

[..]

One larva at Site 11 was infected with B. odocoilei, but it was found feeding on a P. leucopus infected with B. microti.

[..]

Local infection prevalence of small mammal hosts ranged from 0% to 10% for B. odocoilei

https://bioone.org/journals/journal-of-medical-entomology/volume-58/issue-6/tjab074/evidence-for-vertical-transmission-of-babesia-odocoilei-piroplasmida--babesiidae/10.1093/jme/tjab074.short

To investigate these questions, 275 unfed larvae from two Wisconsin counties were tested for B. odocoilei genetic material. Sixteen of 29 pools were positive for the parasite. The maximum likelihood estimation for overall larval infection prevalence was 7.8% (95% confidence interval: 4.7–12).

https://bioone.org/journals/journal-of-wildlife-diseases/volume-55/issue-2/2018-06-147/molecular-detection-of-babesia-odocoilei-in-wild-farmed-and-zoo/10.7589/2018-06-147.short

We detected B. odocoilei in 1% (2/142) of farmed red deer (Cervus elaphus) as well as in 3% (1/29) of captive wapiti and 4% (3/68) of wild white-tailed deer.

Loski and check this out:

Check your test status at any time!
https://www.ticklab.org/my-test-status

So clearly they have the data in the system at any time, but they won't give it to us.
I thought there might be a small chance that they got rid of the data after processing it and sending it to the customer.
But they have it available at any time. I mean how hard is it to divide the infections by the amount of ticks they had.

thanks for keeping us posted

i didnt know Mayo did its own testing

for babesia there is some indication that because it sequesters in capillaries and may not be in blood drawn from a vein - capillary blood may yield a more sensitive test

i have not seen data on chromic Babesia PCR test sensitivity - at least not that wasn't provided by the test manufacturer - and test manufacturers rarely if ever market a test that claims less than 90% sensitivity and specificity ( as there would be little or no market for it) - but these figures almost never seems to be confirmed by actual independent researchers - so its very hard to know if its sensitive enough for chronic Babesia.

PCR tests of both of the two chronic infections we do have data for - lyme and bartonella - are known to be below 50% sensitive via PCR of circulating blood - so it would not surprise me if Babesia is in the same range when circulating blood is tested

whereas since it sequesters in the capillaries - getting blood from those via pin prick is likely somewhat better.
PCR machines only typically use a 0.5ml sample maximum - so in principle this looks workable

just a thought - in case it helps