Help with Autonomic Function Testing

[Kafka82]

Last year an annoying doctor who referred me for this test but he didn't do much about to try to fix things or help me - referred me fot his test that I am attaching here. My main Symptoms are
- GI Issues/Digestion (SIBO)
- POTS
- Very bad exercise intolerance where I feel sick and very dizzy if I try to exercise
- I tend to go easily in alkalosis with reduced Potassium and tachycardia

I think all my issues where beautifully identified and then I lost a year because he said "we cant do much" so am still struggling . It's a bit techy but I highlighted in the doc main things

The key points are:

• reduced venous return
• borderline splanchnic sympathetic failure in the deep target organs
• normal resting cardiac vagal tone but it is associated with inappropriate resting bradycardia
• There was lower than normal cardiodepressor but normal vasodepressor effects of the carotid reflex
• state of hypercapnoea in peripheral tissues at rest in supine position
• derangement of the acid/base balance because of poor carbon dioxide washout during deep breathing

Conclusion
This is a patchy sympathetic dysautonomia affecting mainly the deep target-organs in the splanchnic vascular bed. The pattern is consistent with immune or systemic inflammatory disorders probably originating from the gut.

These symptoms are in the context of LongCovid/Vax Spike Injury I believe which caused some sort of vascular /endothelial disfunction with resulting microclots and systemic inflammation. I also believe of course there is an element of faulty immune resonse/auto immunity. Most auto autoantibodies for Sjorgen/RA/Lupus are negative. I am pending to check GPCRs/Alfa/Beta/Musk receptors auto antibodies. Negative sofar for Lyme and most coinfection. I have a gut parasite called Blastocystis Hominis and possibly dealing with a degree of candida/fungus in the gut am trying to clear.

I am particualrly warried about the acid/base de arrangement because basically I seem I struggle to exale enough CO2! Also the poo venous return ... is worrying and the funny pressure changes . All it seems apparently to originate from whatever is causing inflammation in my veins aorund my gut which seem are struggling to pump blood back ?

It would be great to know if there anything I could do even as a bandaid to try improve the blood venous return and CO2 washout.

 

[Garz]

there is still debate as to whether blasto is a pathogen or normal flora - differences of opinion exists between those microbiologists who have studied it the most

ref the endothelial cell driven inflammation and micro clotting in long Covid

if you have not already seen them - its worth reading the published papers by Pretorius and Kell - including their treatment trails with anticoagulants ad platelet activation inhibitors

of the lyme co-infections - the one that fits the symptoms pattern best is Bartonella - bartonella causes the body to produce excess fibrin in the circulatory system and this can interfere with gas transfer to and from tissues.

i have bartonella also
my symptoms were a perfect fit for typical CFS - and i was misdiagnosed with CFS for years - but am now improving with antimicrobial treatment targeted at bartonella

testing for this organism is very poor generally - very low sensitivity by all standard serologic tests - probably under 25% sensitivity
as a result the UK NHS has recently withdrawn serologic tests for bartonella all together last year i think and not replaced it with anything yet

Igenex has a multispecies bartonella western blot test which should be better - as it uses more antigens

Galaxy diagnostics has a blood culture plus digital droplet PCR which is the best so far published and claims a 49% sensitivity
i managed to find it in my own blood using Giemsa Stained thin blood films - but it is a lot of effort

 

[Kafka82]

Thanks for your input - tbh al these co infections business is so confusing in terms of specificity - when I did test for Bartonella at a private clinic in London I guess they used a poor essay but they gave me these kind of confusion report where apparently my titer was just at the threshold butg of course could corss reactivity with other bacteria I guess - I m attaching the report.

Yeah am well aware of the Pretorius & Kell reserach - I am indeed planning to go to Germany for a microclots test to assess the degree and then decide what to do. I am not super enthusiastic of their triple anti coagulants therapy - seems does very little to fibrin amyloids formation and seems perfect therapy to destroy your gut if longer term - also I know few who did it and actually didnt see much improvements in their microclots score or symptoms - it is one of those we are lucking sufficient RCTs data to say if worth it imo. I am more positive for doing a physical blood filtration through HELP and maybe a short course of anti coagulants cyclically for maintenance.

What type of microscope did you use to analyse your blood sample on Giemsa Stains? Are you combining abx and essential oil for your treatment?

 

[almost]

i managed to find it in my own blood using Giemsa Stained thin blood films - but it is a lot of effort

Would you share what exact stain you used? I have a high quality microscope and have used it some, and have been considering doing some work like this myself. Thanks in advance.

 

[ruben]

I live in Suffolk UK. Could someone tell me useful contact numbers/addresses for pursuing these type of investigations. Any info much appreciated.

 

[Garz]

Thanks for your input - tbh al these co infections business is so confusing in terms of specificity - when I did test for Bartonella at a private clinic in London I guess they used a poor essay but they gave me these kind of confusion report where apparently my titer was just at the threshold butg of course could corss reactivity with other bacteria I guess - I m attaching the report.

happy to help others where i can with what i have learned in my own journey out of this disease. bartonella is still considered a simple acute infection that self resolves by the vast majority of primary care doctors - despite the reams of evidence that has emerged over the last 2-3 decades that it is in fact often chronic in normal immunocompetent hosts. it often has long lasting and lifechanging effects to sufferers their careers, relationships and families. so i want to raise awareness where i can.

ref the test result - that snippet does not state what type of test the results are for - but i think its likely a IFA or ELISA if done in the UK - ie standard serologic test looking for antibodies - these are unfortunately the worst test type for bartonella in terms of sensitivity - specificity is generally better - so positive tests are more meaningful/ diagnostic than negative ones - so the titre being on the threshold for positive / negative lends weight to the possibility of bartonella infection and bears further investigations for bartonella in my view.

as a reference ( its in dogs but still relevant to show the relative performance of various test methods for bartonella )
https://www.ncbi.nlm.nih.gov/core/l...p=PMC3&id=8308881_pathogens-10-00794-g001.jpg

your lab mentions PCR of aspirate or biopsy of infected lymph nodes is a decent method for bartonella - and the paper above bears this out - unfortunately almost nowhere offers this test commercially

the two labs i mention above are the only reasonably sensitive options i know of at commercial labs - unfortunate they are very expensive - galaxy in the order of 1500usd last time i checked - and i think the igenex one around half that - but also less sensitive
everything else is a rather low odds of detecting it - and is like rolling the dice due to the v low sensitivity( high chance of false negative results) of the methods used

Yeah am well aware of the Pretorius & Kell reserach - I am indeed planning to go to Germany for a microclots test to assess the degree and then decide what to do. I am not super enthusiastic of their triple anti coagulants therapy - seems does very little to fibrin amyloids formation and seems perfect therapy to destroy your gut if longer term - also I know few who did it and actually didnt see much improvements in their microclots score or symptoms - it is one of those we are lucking sufficient RCTs data to say if worth it imo. I am more positive for doing a physical blood filtration through HELP and maybe a short course of anti coagulants cyclically for maintenance.

i tend to agree that their treatment is not ideal - but i think they have come closest to describing the mechanisms at work and current treatment trails are more a proof of concept type work to demonstrate they are somewhere near on the right track - so i see it more as an indication that there is hope of further developments in that direction

What type of microscope did you use to analyse your blood sample on Giemsa Stains?

i used a standard biological compound microscope (an old beat up Watson Microsystems 60 form the 1970s) - standard bright field illumination - 1000x magnification under oil.

the optics need to be in good condition - but otherwise nothing special is needed - just a lot of time and self education in microscopy, staining techniques and how to differentiate artefacts from microbes.
these days equivalent performing microscopes can be purchased from cheap Chinese made brands like Omax, swift, Amscope etc for approx. 300GBP
and fortunately bartonella has a completely unique presentation in stained red blood cells - no other organism does this - so it is definitive and diagnostic.

but be aware that because of the way bartonella infections work - infected red blood cells are not found uniformly distributed in the blood - but very infrequently in rare clumps of infected cells that tend to clump together with fibrin adhesions ( most infected cells stay stuck to your blood vessels and in venules etc - not free flowing in the sample - this also why PCR tests of blood fail at lest 50% of the time).
because of this you may have to search 10 or more slides thoroughly to find it - at 1000x a view field is a circle of diameter approx. 0.1mm - and as a result each slide is approx. 100fields by 100fields = 10,000 fields - hence the large mount of work involved. This is why no commercial labs offer this test. Its not economical for them and they prefer tests that can be automated.

Are you combining abx and essential oil for your treatment?

response to treatment varies considerably from individual to individual - some respond v quickly to antibiotics - but for many - and the majority who have been ill many years - recovery is often slow and may involve multiple modalities, correcting things like sleep or diet or deconditioning that may be holding them back.
ultimately the immune system has to be come competent again and keep these infections in check - antibiotics or antimicrobials of any sort - at least the ones we have today - can only do so much.

i was ill for over 5 years misdiagnosed with CFS and untreated - and i had become quite sick - almost housebound most of the time - severe PEM from any exertion
i also reacted quite strongly to any antimicrobial treatment's with worsening illness symptoms before improving. This strong treatment reactions are a common problem and barrier to successful treatment with Bartonella infections( not totally universal to all sufferers but certainly the majority).

so i have had to go carefully and systematically whilst doing all i can to help stabilise and improve immune function - which, for me, involves a comprehensive approach to optimising sleep, diet, exercise, stress reduction (its really not just a case of popping abx pills for a few months).
with all that in place i was able to start antimicrobial treatments and make significant progress

these have been based on the latest clinical and microbiology research on bartonella
main treatments that have helped most are
-antimicrobial herbs for bartonella ( ref Buhner)
-methylene blue for bartonella ( ref Zhang et at at Johns Hopkins )
-oregano essential oil ( carvacrol - ref Zhang and others )
-proteolytic enzymes - bromelain and lumbrokinase (for fibrin build up)

i am approx. 60% recovered now and still improving week by week

i hope its of some help

 

[Garz]

Would you share what exact stain you used? I have a high quality microscope and have used it some, and have been considering doing some work like this myself. Thanks in advance.

sure - its just standard Giemsa stain

i bought it in powder form and made the solution myself - its rather laborious - but i was doing it on a budget so went this way
the WHO describe how to make it
and how to use it
https://www.who.int/publications/i/item/HTM-GMP-MM-SOP-07a

its the same basic method used around the world to look for blood borne pathogens like malaria, toxoplasma etc

you may need to experiment with staining times - slide prep - and refine the method

darker staining makes it a bit easier to spot

i describe my learning curve and findings in this thread along with photos etc
https://www.healingwell.com/community/default.aspx?f=30&m=4268122&p=4

its a welcoming forum with many helpful and knowledgeable members including some who have successfully recovered from this disease

 

[Garz]

I live in Suffolk UK. Could someone tell me useful contact numbers/addresses for pursuing these type of investigations. Any info much appreciated.

in terms of commercially available tests - the two USA based labs i mentioned above are the only ones i could recommend for commercial testing for bartonella

general serology ( antibody tests) are probably around 25% sensitive
that means an infected person has a 1 in 4 chance of getting a positive test result
it could still be worth rolling the dice - as the tests are cheapish 100-250GBP - but if negative you have to consider the high false negative rate - and as such a negative result may be meaningless

for example- i had negative antibody tests for bartonella - only to find it 100% definitively via microscopy a couple of years later

i have considered setting up my own testing service offering this WHO Giemsa stained thin blood smear method for bartonella - as i am just getting to the stage of being able to work part time now and i would very much like to help others with this devastating illness.
the method has many advantages - i.e. its a definitive direct method that does not reply on the functioning of the hosts immune system - but is also labour intensive taking many hours per sample - so i am not sure that it would be economically viable to offer it at a price people will be happy to pay.

here you can see my slides showing infected red blood cells alongside reference images - as well as fibrin / amyloid deposits ( blue) and platelet aggregates in bartonella patients

 

[almost]

It would be great to know if there anything I could do even as a bandaid to try improve the blood venous return and CO2 washout.

I wish I could offer some useful help. I thank you, @Kafka82 , for posting this though, as I know I have venous return issues and CO2 discharge problems. This raises a new awareness for me. I haven't had the testing you have; didn't know there was such a thing (that's what is great about this forum). I hope you come across some answers.

 

[Garz]

It would be great to know if there anything I could do even as a bandaid to try improve the blood venous return and CO2 washout.

i had meant to add

it looks like there are a few possible mechanisms that could be involved
1, large obstructions in a blood vessel to or from the lung - bartonella does cause endothelial cells ( the cells that line blood vessels) to grow in places they shouldn't - is known for these angiomatous growths generally - and it does cause growths in blood vessels that cause blockages - but usually to smaller blood vessels - however growths in larger ones are also known to occur.

2, fibrin deposits in the blood vessels that line the lung and other tissues - everyone with bartonella infection has this to some degree - causes fatigue, brain circulation issues, joint issues, eye issues etc. you can also see extensive fibrin or amyloid deposits in my slides. these can be treated with fibrinolytic agents - like bromelain or the strongest one lumbrokinase - these have been found to be v safe even in high doses - but can certainly drive herx like reactions - esp it taken alongside antimicrobials - so go steadily.
my fibrin and amyloid deposits in my slides were approx 80% reduced after 6 weeks of bromelain at 2 x 1500gdu / day ( more info in the forum post i linked to above )

3, some kind of inflammatory changes in the cells that line the blood vessels in the lung and other organs - these are known to alter gas exchange characteristics in certain diseases of the lung.

of these, if it were me, i would try fibrinolytic enzymes - bromelain ( milder ) as a first and safest option- if you tolerate that then after a month or so - lumbrokinase next

1. seems likely to have been diagnosed already - if that were the issue ...?
3, much harder to figure out what exactly the pathway is - and therefore what to do to counteract it

there is a member of our forum called BlazerGermany who is having odd gas exchange issues linked to bartonella / lyme infection - in his case low DLco - and periodic low oxygen saturation - so there might be something of interest for you there also

again - hope its of some help

 

[Garz]

image of fibrin deposits(stained red) in a blood vessel of bartonella infected subject - even very thin deposits <1um thick dramatically hinder gas exchange

 

[kangaSue]

I'm in some facebook groups for gastroparesis and a small percent of new members in these have said their GI issues have only kicked off after getting COVID-19 so post-viral gastroparesis, but it's possible that it could be a microclotting issue affecting GI tract blood flow at the microvascular level too though.

Cytocam video microscopy is a a new method for visualising the sublingual microcirculation (in the mouth) using Incident Dark Field technology which lays claim to being able to detect microclotting features affecting other parts of the body.
https://pubmed.ncbi.nlm.nih.gov/26215807/

Do you have any issues of a connective tissue disorder nature though, Ehlers Danlos Syndrome maybe, or just hypermobile joints? There's a couple of physical vascular issues that can go with these and be involved with causing splanchnic blood pooling and slowed venous return to the heart - renal Nutcracker Syndrome (left renal vein compression) or May-Thurner Syndrome (iliac vein compression) which can be a cause of all of autonomic dysfunction, gastroparesis and POTS in some cases.

 

[ruben]

So, my question is then are there any known interventions/medications that can offset these symptoms to any degree.

 

[Garz]

So, my question is then are there any known interventions/medications that can offset these symptoms to any degree.

depends on what the cause is in each case

i had all of the listed symptoms above -
- GI Issues/Digestion (SIBO)
- POTS
- Very bad exercise intolerance
- reduced Potassium and tachycardia

in my case caused by a chronic infection - and all improved as i treated the infection
however, treating longstanding chronic infections can be a lengthy process with ups and downs along the way

often symptoms get worse before they get better - leading many people to conclude they must be doing something wrong or simply feel too sick and give up - but this is just the normal course of things.

 

[ruben]

Thanks for reply. Precisely then, what tests did you have to ascertain you had a chronic infection. Are you in the UK.

 

[Garz]

Thanks for reply. Precisely then, what tests did you have to ascertain you had a chronic infection. Are you in the UK.

see my post 8 posts above

infectious disease testing currently relies almost exclusively on serology.
however, its has been well known in microbiology for some years now that serology becomes unreliable in most chronic infectious diseases - even in common well known ones - like for example tuberculosis.

serology is still used because
1, its very cheap
2, it tends to work ok for acute infections
3, doctors are ignorant of chronic infections - or have been miseducated into thinking they do not exist -or are at least extremely rare - therefore they do not perceive a great need for better tests.

clinical medical practice is very gradually catching up with this misconception - for example: even the ultra conservative NHS has recently withdrawn serologic testing for bartonella - acknowledging its lack of diagnostic value (and not replaced it with anything else as yet).

I had serologic tests for bartonella - all negative - but as you can see from the above - i clearly have bartonella in my blood - when it is viewed using the WHO standard method for blood borne infections ( nothing else has this unique presentation inside red blood cells).

I am in the UK. I am just someone who has been surprised and disappointed by the lack of knowledge and rigor from most so called experts that i have seen in the medical community. And, having not been satisfied by the answers i have been given, i have educated myself from the freely available published scientific literature. The gap between what is well known and fully documented in research circles - and what is known in clinical practice ( eg your GP or Infectious Disease doctor) has truly shocked me. One might expect a few years gap in knowledge - but in reality its more like 20-30years!

 

[Bobbi007]

Last year an annoying doctor who referred me for this test but he didn't do much about to try to fix things or help me - referred me fot his test that I am attaching here. My main Symptoms are
- GI Issues/Digestion (SIBO)
- POTS
- Very bad exercise intolerance where I feel sick and very dizzy if I try to exercise
- I tend to go easily in alkalosis with reduced Potassium and tachycardia

I think all my issues where beautifully identified and then I lost a year because he said "we cant do much" so am still struggling . It's a bit techy but I highlighted in the doc main things

The key points are:

• reduced venous return
• borderline splanchnic sympathetic failure in the deep target organs
• normal resting cardiac vagal tone but it is associated with inappropriate resting bradycardia
• There was lower than normal cardiodepressor but normal vasodepressor effects of the carotid reflex
• state of hypercapnoea in peripheral tissues at rest in supine position
• derangement of the acid/base balance because of poor carbon dioxide washout during deep breathing

Conclusion
This is a patchy sympathetic dysautonomia affecting mainly the deep target-organs in the splanchnic vascular bed. The pattern is consistent with immune or systemic inflammatory disorders probably originating from the gut.

These symptoms are in the context of LongCovid/Vax Spike Injury I believe which caused some sort of vascular /endothelial disfunction with resulting microclots and systemic inflammation. I also believe of course there is an element of faulty immune resonse/auto immunity. Most auto autoantibodies for Sjorgen/RA/Lupus are negative. I am pending to check GPCRs/Alfa/Beta/Musk receptors auto antibodies. Negative sofar for Lyme and most coinfection. I have a gut parasite called Blastocystis Hominis and possibly dealing with a degree of candida/fungus in the gut am trying to clear.

I am particualrly warried about the acid/base de arrangement because basically I seem I struggle to exale enough CO2! Also the poo venous return ... is worrying and the funny pressure changes . All it seems apparently to originate from whatever is causing inflammation in my veins aorund my gut which seem are struggling to pump blood back ?

It would be great to know if there anything I could do even as a bandaid to try improve the blood venous return and CO2 washout.

Have you figured anything out? I have similar issues.

 

[Kafka82]

Would you share what exact stain you used? I have a high quality microscope and have used it some, and have been considering doing some work like this myself. Thanks in advance.

I was thinking to get a microscope myself - what type of kit would you suggest ? One with fluorescent condenser or dark field one ? Both ?

 

[Kafka82]

Have you figured anything out? I have similar issues.

Unfortunately not still trying to understand how to improve this . I noticed nicotine patches help a bit

 

[Rufous McKinney]

It would be great to know if there anything I could do even as a bandaid to try improve the blood venous return and CO2 washout.

I watched this video about the Sigh Effect- it's a simple breathing technique.

Might be at least worth trying. I need to "try more" of this breathing myself.

This is a researcher out of UCLA.