Question about Petechien

[SWAlexander]

I was just checking that ALL your incidences of sepsis were directly after a surgery.

I found this in my records:

 

[Garz]

not wishing to argue - but to explore the logic - as i think you have perhaps intended

would not the first diagnosis Arterial thromboembolism explain all the other symptoms in red - without the need for the further leap to CES?

 

[SWAlexander]

As life is not already complicated enough a 3th independent diagnosis arrived yesterday by mail.

Related to: https://forums.phoenixrising.me/threads/question-about-petechien.86983/post-2388630

According to the blood test, I have high platelet numbers and petechien. I know already that I have VWF V but he pointed out, especially Bernard-Soulier syndrome (BSS). This link was included for my information: https://www.hoacny.com/patient-reso...ed-intravascular-coagulation/how-disseminated
The question remains if these symptoms were triggered by Covid vaccine, which I had a month before.

First I was prescribed blood thinner, now I should not use any, not even Aspirin.
Sometimes I feel like giving up.

 

[SWAlexander]

Arterial thromboembolism explain all the other symptoms in red

(CES) is compression of the spinal nerves and in my case, 7 existing Tarlov Cysts could be one reason.
I would appreciate your view.
The question remains why my hematologist did not see the connection. I´m facing a cycle of confusion, as I stated in the following post (Bernard-Soulier syndrome (BSS) high platelet numbers.
In fact, I am bruising very extensively and a cut wound bleeds for at least 2 hours if not pressured.

 

[Garz]

(CES) is compression of the spinal nerves and in my case, 7 existing Tarlov Cysts could be one reason.
I would appreciate your view.
The question remains why my hematologist did not see the connection. I´m facing a cycle of confusion, as I stated in the following post (Bernard-Soulier syndrome (BSS) high platelet numbers.
In fact, I am bruising very extensively and a cut wound bleeds for at least 2 hours if not pressured.

I am a little confused ....

I am no expert - so i can only really help by checking the logic -

i thought i was confusing the acronyms - but your earlier post said

Cholesterol-embolization syndrome (CES) is a multisystemic disease with various clinical manifestations. CES is caused by embolization of cholesterol crystals (CCs) from atherosclerotic plaques located in the major arteries, and is induced mostly iatrogenically by interventional and surgical procedures; however, it may also occur spontaneously.

where as in post #64 you said

(CES) is compression of the spinal nerves and in my case, 7 existing Tarlov Cysts could be one reason.

so there seems to be an inconsistency there ....

in any case - my main point was that Cholesterol-embolization syndrome does not seem to fit well with either the material of the crystals or their location in your body - and is not needed to explain the vast majority of the symptoms you describe. whereas Arterial thromboembolism seems to be able to explain the vast majority of symptoms. thus i was questioning the logic of assuming or deducing that Cholesterol-embolization syndrome is present.

regarding what is going on overall - i suspect that becomes very complicated rather quickly - and may be beyond what is known today in terms of knowledge of the details of the immune systems response to insult or serial insults combined.

but in general terms you seem to be suffering long term immune dysregulation of some sort initially triggered by the polio virus - and evidenced by repeated bouts of sepsis - and which likely also has other contributing factors - such as environmental triggers, auto-immunity or additional infections - and which is exacerbated by the additional inflammatory and immune dysregulating effects of COVID/Vaccine.

we know the vaccines mainly focus on the spike protein portion of the SARS-Cov-2 virus and that this protein strongly binds to ACE2 receptors. ACE2 receptors are in turn heavily involved in the coagulation system, platelet activation, endothelial cell damage, fibrosis and cell death.
a quick google found the below diagram that details some of this - but the coagulation system in particular is very complex - and so this s just one example.

beyond this we are into realms of speculation and may be joining the dots inappropriately - but if i had to guess i would say the added immune insult of the vaccine - which replicates part of the spike protein - on top of an already dysregulated immune system may have resulted in some form of autoimmunity to some part of the system that the spike protein binds to ( or some downstream element from it ) - and that is the cause of ongoing symptoms.

often these type of reactions can calm down again in time - but its highly variable.
if it were me i would, i think, do what i could to Iive as clean and low inflammation lifestyle as possible
eg maximising clean low inflammatory food diet, maximising sleep, doing regular gentle exercise, do stress reduction, time in nature etc
basically everything i could do that is documented to lower inflammation and help resent the immune system.
there are no guarantees - but its what i would do.
there my be medical interventions possible also - but again i am no expert - and i do not know how there woud interact with your other conditions - whereas the above is safe and actionable.

hope its of some help

 

[SWAlexander]

hope its of some help

Yes it does. You make me rethink and reevaluate, even sometimes what "experts" come up with.

In short:
You say: hope it’s of some help and I am no expert. I truly appreciate your feedback.

I´m no expert either and rely heavily on publication, blood tests, MRI/CT and my remaining faculties (if there are any after covid left at all) when searching for answers.
About ACE2 receptors. I have read “Effects of COVID-19 and vaccination on the human immune system: cases of lymphopenia and autoimmunity” https://www.futuremedicine.com/doi/10.2217/fvl-2022-0218
And https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7778857/

The most interesting part is rheumatology stated VWF but NO APS in Jan 2021 after blood tests.
1st Covid vaccine (BioNTech) in April, and 2nd booster in May.
However, 8 months later, in August 2021 blood test showed APS. It is confusing and not only to me.

About Bernard-Soulier syndrome (BSS) See Word doc. I and my doctor´s main focus is to find the reason for high ANA and inflammatory conditions like autoimmune diseases. Certain infections show iron deficiency, and are common cause of a high platelet count. I, however, had until last month, high Ferritin, which presents another unsolved puzzle.

About Inflammation. Yes, there is existing inflammation since early childhood age 11 – psoriasis.
It is known that psoriasis causes systemic inflammation, which is an inflammation that is widespread across the body.

Where and when did all this start? Cross-reference leads me back to genetics and epigenetics.

However, as you may know, Polio has very poor research results/publication and after all these years no Genetic markers.

Your kind suggestion regarding a clean low inflammatory food diet, maximizing sleep, and stress reduction has already started last year, as I describe in post #3: https://forums.phoenixrising.me/threads/tachycardia-good-news.90392/#post-2438298

 

[Garz]

i am afraid i do not have much to add

except perhaps to say i would view all auto-immunity as downstream effects rather than causes.

immune dysregulation causes auto-immunity - the causes of immune dysregulation can be many:

• infection,
• toxins,
• environmental factors,
• disturbances in the gut lining permeability seem to be a prerequisite in the vast majority of cases according to the most recent research i have read on the topic

of course - once auto-immunity is activated - we know it adds more inflammation into the picture and so round and round the wheel can turn - which is one of the reasons why it can be so hard to turn off.

ref ferritin and infection - i would not say lack of low ferritin is a reliable marker for lack of infection.
as an example - i have a chronic bacterial infection which drives CFS like symptoms and is known to cause haemolytic anaemia - and indeed signs of that have been seen on blood smears - yet my ferritin has never been out of range on 20+ routine blood tests.

i think any chronic inflammatory disease can raise ferritin though - RH is known to - others too
so i think the high ferritin is just consistent with the auto-immune type stuff going on.

i am sorry i cannot be more help

some supplements thought to be able to help modulate the type of inflammation in various autoimmune conditions are: curcumin, omega 3 fatty acids and black seed oil,
it might be worth investigating these - to se if they are worth incorporating into your low inflammatory regime
but given your somewhat unstable condition i think if it were me would tread carefully when trying them out.
note - for me omega 3's and curcumin are very mild - but black seed oil is antimicrobial and causes me worsening of symptoms for a while - before gradual improvement later.

if you still find yourself in the same boat 6 months or a year down the line, with no answers - if it were me - i think i would investigate stealth infections as a possible underlying trigger for all the weird symptoms - that is after all what they do ( i know as i have had my fair share).

testing is unfortunately, generally poor and fraught with difficulties - but it can be navigated with care.

all the best

 

[SWAlexander]

chronic inflammatory disease

This is my major problem, confirmed herpes 1 and 2, rheumatoid arthritis, psoriatic arthritis, and lupus.
My secondary dilemma is the 2016 sepsis (very rare growth: bacteremia: Staph epidermidis and Peptostreptococcus, one colony Staph caprae, Corynebacterium species) and C-dif before.

The last year beginning of my recovery started with VEDICINALS® 9. https://www.vedicinals.com/product/vedicinals-9/
Active ingredients: Baicalin, Hesperidin, Luteolin, Quercetin, Rutin, Glycyrrhizin, Epigallocatechin gallate, Curcumin Piperine.

I love and eat a lot of salmon as it becomes available; otherwise, I supplement with omega 3.
Black seed oil, or in the form of capsules is a little problem for me. So I use black cumin seeds in salads.

I´ll never be completely healthy because of PPS muscle weakness and ankylosing spondylitis, but I´ll be satisfied if I can manage/control PEM and other lingering symptoms. Though I hope the Tarlov cysts will disappear. For sure I will not have another surgery.

I have buried the idea of moving back to the States or flying anywhere else because of thrombosis (VWF).

Thank you for your inspiring and confirming response.
While I´ll keep the door open for additional suggestions or advice, I wish you the best.

 

[SWAlexander]

Update on Fluoroquinolones

FDA Warning About Fluoroquinolones and Risk of Aortic Ruptures or Tears
https://www.acog.org/clinical/clini...inolones-and-risk-of-aortic-ruptures-or-tears​

 

[Garz]

regarding immune suppression - resulting in repeated septicaemia against a background of problems with prior infections and i think auto-immune disease

i came across this in some of my reading today and your case came to mind

it points to deficiencies in the human complement system - namely C4 - being a known driver for susceptibility to both septicaemia and auto-immune diseases

Complement C4 is involved in the activation of both classical and lectin complement pathways. The classical pathway of complement system is crucial for anti-microbial defense through anti-pathogen antibody, which recruits C1 complex and initiates a cleavage cascade involving C4, C2, C3, and C5 and accomplishing microbial clearance. In addition, lectin complement pathway is also involved in the anti-microbial defense. Recent study revealed that loss of classical pathway results in rapidly progressing septicemia and impaired macrophage activation,

and

A recent study by Liesmaa et al. demonstrated that homozygous C4A deficiency in patients was associated with the increased prevalence of lymphomas, celiac disease, and autoimmune disease SLE. In the same study, homozygous C4B deficiency in patients was documented to be linked with the drug intolerance and various post-infectious symptoms.

https://www.frontiersin.org/articles/10.3389/fimmu.2021.694928/full

it may not be the only potential cause - but it does seem to fit quite well with the issues you describe
the area of the human genome that controls the production of Complement is in the same locus as the human MHC and this area is known to be what's called "Hypervariable" - with a lot of variation from one individual to the next
so polymorphisms in this area are v common - so that's another possible reason to suspect some abnormally here
lack of complement also increases the hosts susceptibility to not only bacterial infection - but also viruses - eg Polio - and would contribute to issues clearing the virus

the good news is that C4, C4a and C4b levels are measurable via commercially available tests today - along with other complement pathway factors
if they did turn out to be low - there may well be known therapies to increase them.

again - your issue may be unrelated - but thought it worth passing on - in case it was the issue and could point you towards some treatment that could improve quality of life

good luck!

 

[SWAlexander]

regarding immune suppression - resulting in repeated septicaemia against a background of problems with prior infections and i think auto-immune disease

i came across this in some of my reading today and your case came to mind

it points to deficiencies in the human complement system - namely C4 - being a known driver for susceptibility to both septicaemia and auto-immune diseases

How thoughtful of you. Thank you.

Yes, I have been diagnosed with psoriatic arthritis with a skin rash at age 11 and was diagnosed 10 years ago with systemic lupus erythematosus (SLE), at the same time as ME/CFS.
Petechiae came after covid vaccination. I only found out in May that I´m highly allergic to Polyethylene Glycol (PEG) (preservative in all vaccination) after I had a tetanus shot.

You are absolutely right, as you can see in the screenshot, about C4A. Same results for C4B.
The question remains, what can I do?
I´ll pass this information on to my research friends.
Maybe anyone with ME/CFS has the same problem???

"Elevated C4A strongly correlates with fatigue due to mitochondrial or cell dysfunction" and "mycotoxins produced by mold can affect the body’s central nervous system as well. "
https://themoldguyinc.com/elevated-cf4-could-indicate-mold-exposure/
If this is the case it would mean - "gene methylation in chromosome 6".

Thank you so very much. I will read the link you posted.

 

[Garz]

i am happy to help

ref what to do about it - i am afraid i didn't go that far down the rabbit hole - but i would be surprised if there wasn't something that is known to increase it nutritionally or epigenetically - even if a person has the less effective allele.

ref the mold question - all of the text books say that C4a is triggered by infections - viral, bacterial etc - as part of the innate immune system and complement pathways - so i really do not think it is as simple as high C4a means Mold

if i recall correctly - even Dr Richie Shoemaker who pretty much originated the condition had around 4 or more biomarkers he looked for to try to wheedle out of it was mold or something else causing a persons symptoms.

additionally - pretty much every person i have ever seen tests for who have had either Great Plains labs or the other main test house ( name escapes me right now ) for mold exposure seems to have positive results - so i am wary of whatever is going on there / or how they set the limits - something seems very much off.

 

[SWAlexander]

but i would be surprised if there wasn't something that is known to increase it nutritionally or epigenetically - even if a person has the less effective allele.

Very clearly, we must rule out or include all possibilities.
I have sent the link you provided, together with my genetic markers to 2 different researchers, one in India and another in Australia.
If you like, I will send you their answers, whenever they have one.

 

[SWAlexander]

I also have hemophilia, a defective factor VIII, (X-linked C3b in the alternative pathway) that explains the diagnosed Factor 8.
Looks like I can´t win.
Thank you Mother and maternal grandmother "von Thumm".