Blazers results are Here!

Hey, my results are there so lets Roll for everyone interested:

Babesia, Bart and Borellia negative with LTT

however:
- CMV Virus highly positiv at 27 (ref <3 SI)
- Chlmydia Trach. Positive at 14 (ref 3)
- Gardia Lamblia positive 5
- VZV positive 5
- Chlam Pneu positive at 4

Didnt expect that! Guess ITS time for Virus Treatment...

if i am honest - i don't really know how to interpret the LTT tests Blazer

what we do know is that there is significant cross reactivity between members of the herpes family viruses and members of the proteobacteria class of bacterial infections in serologic testing - and in particular with some notable other stealth bacteria - eg Borrelia Burgdorferi
( basically seems to happen with bacteria known to cause chronic infections)

i don't know if this type of cross reactivity is well documented for LTT tests either way ( reliable data that it does happen - or reliable data that it doesn't)

on the one hand
- antibody's and lymphocytes are two different parts of the immune system
- makers claim LTT's specificity ( lack of cross reactivity ) are superior to antibodies based tests

on the other
- these two parts of the immune system do talk to each other and have some shared detection mechanisms - so it could be possible for lymphocyte type tests to also have cross reactivity (the LTT's are just recognising and remembering proteins on microbes - just as antibodies are).
- LTT's are v rarely used for infectious disease diagnostics in mainstream medicine ( i think only in Tuberculosis so far - which is problematic via serology - so they have few other options ) so we do not have as much data on cross reactivity or lack of it as we do with serology
- other than mainly the test makers produced data - i don't know if there is good independent studies to back up how specific they really are... (data is actually v sparse on this even for serology despite us having used it so extensively for 70 years or more )

overall my reason for caution is that its a known thing for people in the chronic illness community to have tests came back with v high markers for common viruses - like these

very often - as has happened for others here - PCR tests - that should be very clearly positive if there was enough virus around in the body to be triggering a strong antibody or LTT response - come back negative

this becomes hard to interpret
we all typically have these viruses inside us for life in small numbers - having caught them in our youth - so now the question is
is virus really present in sufficient numbers to make us sick - in which case why is it not showing up via PCR
or
is our body somehow pumping out immune markers to viruses that either do not exist - or exist in only normal numbers - as in other healthy people.

people in the CFS community have seen the same thing - crazy high numbers in blood tests - then negative PCR - and have been experimenting with antiviral drugs - there was a trial in Johns Hopkins i think with valcyte - but i understand it was discontinued due to lack of long term response

there are some threads about this on the phoenix rising CFS/ME website - some people report responding only to fall back a few months later

its a puzzle -
we do know that some viruses - like VZV can and do reactivate when the hosts immune system is suppressed - eg shingles in older persons
and some LLMD's will treat for reactivated viruses
but we also know some antivirals are active for Tick borne infections - like bartonella - so that is one idea

sorry its not more clear - and for another long post - v few things seem to be cut and dried with this illness

i think if it were me i would try PCR testing for the couple of viruses that came out highest to see if that gave another useful data point

Gonna deleted it thx

Hey, sad update. Have been to ER again. My Oxygen dropped to 66mmHg.

Even my LLMD thinks now I have a major Lung problem. Man I wish it could "JUST" have been Lyme.

My X-ray looks very likely for Pulmonary Hypertension and I have a appt at the pulmologist in 2 days. My Oxygen saturation dropped to 85%. It literally felt like my whole body was dying. My heart even stopped for a second. I might have been dead for 1 second this morning. Atleast I felt like it.

If I die i feel no regrets.
I accept Jesus as Lord, so If I go - I go.

Blazer hang in there buddy, we are all rooting for you, in fact:

BlazerGermany said...
I accept Jesus as Lord, so If I go - I go.

I just said a prayer for you and at least 2 other people said they will do the same.

Try to ask as many questions as you can in the ER and for a copy of your lab tests (if possible).

Did they check you for carditis and the different types of carditis?

Bless you my friend.

sorry to hear this Blazer

i have had some success in dealing with conventional medicine doctors but putting my concerns in writing

it seems when everything is verbal - they control the written record - and anything said verbally can be denied later or presented in a different light.

they are also highly risk averse as a profession - so tend to take anything in writing more seriously as they are worried about malpractice or professional oversight.

anything put in writing is best if kept to the facts
- test A showed XX
- i asked for YYY and was refused by Dr ZZZ on date BBB
- I was told i could not have test CCC because of DDDD
- I was told i could not have disease EEE because of FFF

that kind of thing - facts that can be cross checked against proper procedure

good luck

as Rainy says - we are all rooting for you !

I have Left before sleep apnea Testing. I was so angry i Just couldnt Take it anymore

I'm really sorry this happened to you, Blazer. Were they able to do any testing that you did find reassuring?

My DLco is Back to 86% and Nobody knows exactly why. This is so weird. My blood Oxygen is Back to 96 mmHg AS If NOTHING happened. What is going on...

again just putting this out there in case it could help lead to some explanation for the low oxygen saturation etc

the lungs work by gas exchange between the gases in the little pockets of air in the lungs called alveoli and the haemoglobin in the red blood cells in the capillaries in the lung.
To get from one to the other, the gasses have to pass through the one cell thick membrane of the capillaries lining the alveoli
https://www.ncbi.nlm.nih.gov/books/nbk534789/figure/article-24501.image.f2/?report=objectonly

fibrin build up in these capillaries - even a v thin layer - as seen elsewhere in the body with bartonella and Babesia infections - i known to impair exchanges of gasses - so could be one explanation for impaired gas transfer - and this could be a possible explanation for low oxygen saturation and DLoc numbers ( also measures gas exchange i believe).
excess fibrin ( stained red) lining capillaries in bartonella infection - slide from Breitschwerdt et al
VIEW IMAGE

again - we cannot diagnose over the message forum - so just offering potential ideas to be followed up with formal investigations to confirm or dismiss - to hopefully help find out what is going on

when my fibrin was ait its worst with bart - my ESR was less than 1mm
this is unexpected in inflammatory/infectious conditions - and likely caused by the excess fibrin causing clotting to be suspended in the blood column - rather than increased ( ESR measures how much clotting products settle to the bottom of a tube of blood in 1hrs )

i am guessing they have measured ESR a few times so could be a potential indicator if this was also v low - given the other issues you are having.

if this is what's going on its likely very treatable

Hang in there Blazer,

In regards to Nebivolol, I'm glad you mentioned that.

Please see:

https://pubmed.ncbi.nlm.nih.gov/23506636/

I'm not saying you have heart failure, I'm referring to the oxygen issues.

Please note how little difference there is to Nebivolol, carvedilol and bisoprolol in these findings. I would say it's safe to say it can also cause faster oxygen consumption and lower ventilation (during exercise) in the same way.

What kind of tests did they run on you? Also check the side effects on Nebivolol, it says:

- difficult or labored breathing
- shortness of breath
- slow or irregular heartbeat
- tightness in the chest
- chest pain or discomfort
- wheezing

etc.

did that paper show that Nebivolol lowers DLco ?

its clear that the side effects can include things like wheezing and shortness of breath in some people

but, DLco is a v specific measurement not necessarily present with shortness of breath.

I gave the paper a quick scan and it seemed to just be comparing the three drugs
findings were mainly that DLCO was lower on Carvedilol - compared to bisoprolol and Nebivolol

but there didn't seem to be any non-drug control group in that paper to use as reference - so i am not sure it shows whether all of them do in fact lower DLco to some degree or not?

just sanity checking as i see there are other papers that state Nebivolol actually increases exercise capacity
eg here https://onlinelibrary.wiley.com/doi/10.1111/j.1755-5922.2011.00306.x

I Just thought about it again.

In April when my results where so Bad i didnt Take Nebivolol at all.

Maybe Nebivolol increased my DLco.. guess we'll never know.

However: i have contacted a Special PAH clinic to rule it Out for Sure. Since normal doctors have 0 Idea.

After that is Ruled Out i have No choice in going back to the chronic infection area 😅