SWAlexander
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Finally!!! Lab results indicate "Calcinosis", a skin /subcutaneous tissue deposit. Not clear yet what type.
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Question about Petechien
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that sounds like a bit of a wild ride
what was the source of the sepsis on the previous occasions - also surgery ?
if not a clearly idenified external wound/infection - when these are not present the gut microbiota is the most likely source - i think the species concerned also fit this explanation
if C-diff predated the sepsis - its possible / likely that this damaged the integrity of the gut barrier - allowing gut bacteria into the blood stream ( this is well known to occur in even mild gut infections).
that is however a pretty common occurrence - even after respirator viruses for instance - like Flu or COVID - so something likely supressed the immune system to allow sepsis to escalate - rather than the escaped bacteria simply getting mopped up by the immune system - as its is supposed to do.
could also be related to unusual reactions to COVID later
i have this to some extent by the way - i have had only mild COVID the last 2 times - but extended periods of gut upset afterwards - discomfort, altered bowel habit, bloating, disturbed sleep, additional fatigue. there are papers showing blooms of certain gut bacteria during / after COVID leading to SIBO, gut symptoms and changes in gut barrier permeability.
SWAlexander
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Yes.
A PET scan revealed undoubtedly that the hardware was contaminated.
In a second surgery, 3 weeks later, the wound and hardware was swabbed, tested and wound-washed out. Meanwhile, the bacteria were not only in the CSF but also in the bloodstream.
See pictures.
Attachments
SWAlexander
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Yes. All with different bacteria except C-Diff. C-Diff came from a contaminated well water.
Wow, i must know 10 people who have had various surgical implants - knee joints, hip joints, titanium rods from knee to ankle, vertebra fusion with screws after trauma, rebuilt femur with titanium tube etc.
None have had sepsis afterward.
Seems like you have either been incredibly unlucky - or something v unusual is going on.
Perhaps its a clue of sorts
None have had sepsis afterward.
Seems like you have either been incredibly unlucky - or something v unusual is going on.
Perhaps its a clue of sorts
SWAlexander
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a clue of sorts
SWAlexander
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This is a Twitter posting from Journal of Brown Hospital Medicine
16, y female p/w left cervical lymphadenopathy x 2 months & receives a DX of TB lymphadenitis.
She doesn't respond to ATT & is Rx as drug-resistant TB for 6 months.
A wise guy decides to biopsy the node and sees this:
Epstein-Barr Virus, Infectious Mononucleosis
16, y female p/w left cervical lymphadenopathy x 2 months & receives a DX of TB lymphadenitis.
She doesn't respond to ATT & is Rx as drug-resistant TB for 6 months.
A wise guy decides to biopsy the node and sees this:
Epstein-Barr Virus, Infectious Mononucleosis
seems a bit of an odd first diagnosis ...
but then TB and drug resistant TB is more of a common issue in India so perhaps they can be forgiven
but EBV and associated lymph gland swelling is common. and at 16 this is likely that persons first infection with it - so it makes sense.
i still think there are such things as latent re-activated viruses - i.e. in people who had it as teenagers like most people do- but generally in these later cases that something else is underlying messing up the immune system in most of those cases. as otherwise the immune system would be doing what it is evolved to do and keeping the viruses we all get as adolescents well under control.
SWAlexander
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The first was after a hysterectomy. Undetected internal bleeding for one month turned into gangrene.
The second was a compound fracture and five bones in the foot broken, needed two screws and the last was back surgery L 4 and 5.
Maybe I was unlucky and had careless surgeons.
BTW I have PPS (polio at age 6)
sorry to hear that - another poorly understood condition
seems unlikely given how many others seem to have these surgeries without sepsis - vs - seems like you get it almost every time ...
makes me wonder if you have some kind of immune suppression going on
i notice that they say PPS itself does not cause immune suppression
but that some studies suggest the condition may be caused by ongoing viral persistence in those affected( i think the studies showed high anti-polio virus antibodies and polio virus RNA in the CSF 15 years after initial infection).
which itself might suggest some kind of immune suppression or at least immune dysregulation.
i think if it were me i would be looking for things that can cause immune suppression/immune dysregulation as a potential upstream cause of multiple issues in your medical history.
chronic stealth bacterial infections could be one potential explanation. but i am sure there are others
good luck
SWAlexander
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Besides Herpes at age 5, Polio at 6. I have had psoriasis since the age of 11 (3rd generation Psoriasis). shingles in 2005, Lupus, permanent low cortisol diagnosed in 2007, and elevated phytanic acid (VLCFA) test positive in 2018.
I think that counts for, immune compromise.
However, I´m still alive in spite of ME/CFS, APS, VWF, Covid in Jan 2020, RSV in Nov. 2022 and all other medical problems (7 Tarlov cysts, stenosis and spondylitis).
There is one more genetic marker, I have also blood tested for celiac disease.
In my lab results you may have seen Folsäure (Folic acid) 3.5- is way too low.
This should be for many ME/CSF patients a warning sign.
"A deficiency in B12 or folate may take months or years to become evident, and may lead to symptoms such as fatigue, muscle weakness, diarrhea, difficulty concentrating, forgetfulness, sleeplessness, irritability, and mood swings."
"Vitamin B12 or B9 (commonly called folate) deficiency anaemia occurs when a lack of vitamin B12 or folate causes the body to produce abnormally large red blood cells that can't function properly. Red blood cells carry oxygen around the body using a substance called haemoglobin."
Does folic acid make you tired?
"Yes, folic acid will make you sleepy. Folic acid supplementation helps an individual to get vitamin B9 in the body. Vitamin B is associated with insomnia. Supplementation of vitamin B will help patients to attain a good quality of sleep."
I wish you will be successful in fighting Bartonellosis.
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SWAlexander
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Garz.
“Let the Cat Out of the Heart”: Clinical Characteristics of Patients Presenting with Blood Culture-negative Endocarditis due to Bartonella speciesAbstract
Patients with blood culture-negative endocarditis due to Bartonella infection frequently had prosthetic cardiac valves, and presented with fever, cytopenias, and kidney failure associated with ANCA PR3 positivity. Patients had a wide range of Bartonella IgG titers and commonly underwent surgery. The mortality was low and not directly related to bartonellosis.
https://academic.oup.com/ofid/advance-article/doi/10.1093/ofid/ofad293/7185605?login=false
yep -
interesting that many of the cohrt had had a valve replacement already - before the bartonella dagnosis and further endocarditis
i wonder whether they had had bartonella all along that caused the initial heart valve growths in the first place
or perhaps the immunosuppressant drugs given to all transplant patients ( these days the valves are usually from pigs ) allowed bartonella infection to take hold after surgery ......
i noticed also "no correlation between PCR positive and positive serology" and culture of blood was negative in all
interestingly my mother had a valve replacement a few years ago - the surgeon said the rest of her arteries were "like a new born babies"- v unusual - no cause was identified - but i don't think they did any pathology on the growth as standard - she had had a slight murmur for years but she is otherwise well.
i had not come across ANCA PR3 before - i know people with Bartonellosis and kidney failure - thanks for the link
interesting that many of the cohrt had had a valve replacement already - before the bartonella dagnosis and further endocarditis
i wonder whether they had had bartonella all along that caused the initial heart valve growths in the first place
or perhaps the immunosuppressant drugs given to all transplant patients ( these days the valves are usually from pigs ) allowed bartonella infection to take hold after surgery ......
i noticed also "no correlation between PCR positive and positive serology" and culture of blood was negative in all
interestingly my mother had a valve replacement a few years ago - the surgeon said the rest of her arteries were "like a new born babies"- v unusual - no cause was identified - but i don't think they did any pathology on the growth as standard - she had had a slight murmur for years but she is otherwise well.
i had not come across ANCA PR3 before - i know people with Bartonellosis and kidney failure - thanks for the link
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SWAlexander
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Update on crystals. "Electrolyte Abnormality" after Covid.
A second opinion resulted in "Calcium oxalate crystals; 2° to Hypercalcemia."
Dermatitis was caused specifically by calcium oxalate raphides,
A second opinion resulted in "Calcium oxalate crystals; 2° to Hypercalcemia."
Dermatitis was caused specifically by calcium oxalate raphides,
its crazy how many odd things COVID seems to be able to cause
well done for getting a definitive analysis
SWAlexander
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The latest info on Crystals:
Abstract:
Cholesterol-embolization syndrome (CES)
is a systemic disease caused by showering of atherosclerotic plaque materials, such as cholesterol crystals (CCs), from the aorta and its major branches to distal circulation, leading to ischemic and inflammatory damage to multiple organs.
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. Embolized CCs lead to both ischemic and inflammatory damage to the target organ. Therefore, anti-inflammatory agents, such as corticosteroids and cyclophosphamide, have been investigated as treatment for CES in several studies, with conflicting results. Recent research has revealed that CES is actually a kind of autoinflammatory disease in which inflammasome pathways, such as NLRP3 and IL1, are induced by CCs. These recent findings may have clinical implications such that colchicine and IL1 inhibitors, namely canakinumab, may be beneficial in the early stages of CES.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6626893/
Picture credit to: https://www.the-scientist.com/image-of-the-day/image-of-the-day-cholesterol-crystals-38583
Abstract:
Cholesterol-embolization syndrome (CES)
is a systemic disease caused by showering of atherosclerotic plaque materials, such as cholesterol crystals (CCs), from the aorta and its major branches to distal circulation, leading to ischemic and inflammatory damage to multiple organs.
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. Embolized CCs lead to both ischemic and inflammatory damage to the target organ. Therefore, anti-inflammatory agents, such as corticosteroids and cyclophosphamide, have been investigated as treatment for CES in several studies, with conflicting results. Recent research has revealed that CES is actually a kind of autoinflammatory disease in which inflammasome pathways, such as NLRP3 and IL1, are induced by CCs. These recent findings may have clinical implications such that colchicine and IL1 inhibitors, namely canakinumab, may be beneficial in the early stages of CES.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6626893/
Picture credit to: https://www.the-scientist.com/image-of-the-day/image-of-the-day-cholesterol-crystals-38583
That sounds like a different condition to me.
Dislodged artery plaques will travel in the circulatory system until they lodge in major organs - typically lungs, liver, kidney, potentially brain. etc where they will cause localised damage as the abstract describes.
They will have great difficulty making it into the very fine capillaries to reach the skins upper areas.
Different materials also.
Calcium oxalate vs cholesterol
No?
Dislodged artery plaques will travel in the circulatory system until they lodge in major organs - typically lungs, liver, kidney, potentially brain. etc where they will cause localised damage as the abstract describes.
They will have great difficulty making it into the very fine capillaries to reach the skins upper areas.
Different materials also.
Calcium oxalate vs cholesterol
No?
SWAlexander
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At first, I thought so too until I read this.
My symptoms and confirmed diagnosis are in red.
Related condition:
Arterial thromboembolism
Contrast-induced acute kidney injury
Ischemic acute tubular necrosis
Drug-induced interstitial nephritis
Endocarditis
Aortic dissection
Left atrial myxoma: An atrial myxoma is a noncancerous tumor in the upper left or right side of the heart. It most often grows on the wall that separates the two sides of the heart. This wall is called the atrial septum. https://www.mountsinai.org/health-library/diseases-conditions/atrial-myxoma
Symptoms of a myxoma may include
Breathing difficulty when lying flat or on one side or the other.
Breathing difficulty when asleep.
Chest pain or tightness.
Dizziness.
Fainting.
Sensation of feeling your heart beat (palpitations)
Shortness of breath with activity.
Symptoms due to embolism of tumor material.
Lymphoma
Tuberculosis
Secondary syphilis
Pheochromocytoma
Raynaud’s phenomenon
Vasculitis (polyarteritis nodosa, rheumatoid arthritis, systemic lupus erythematosus, dermatomyositis, thromboangiitis obliterans)
Cryoglobulinemia
Antiphospholipid syndrome
Polycythemia vera
Thrombotic thrombocytopenic purpura