It is a chain link reaction.

SWAlexander

SWAlexander

Senior Member
Messages
1,455
This is what scientists do. Each lab is looking for a different “culprit” and compares its findings with other experts. But, where is the beginning of the chain for so much pain?
So far, I have not found any research publication, regarding oxidant-deprived muscle weakness in combination with Spherocytosis and ME/CFS. Yes, there is mention of sickle cell disease but no details yet. Please let me know if you have knowledge about such research.

Since this team (https://sciencenorway.no/chronic-fa...failure-in-energy-supply-to-the-cells/1907778) comes close to what I experience, I send a Twitter message asking if Spherocytosis could be the reason why muscles are not getting oxidant.
 
Last edited:
Martin aka paused||M.E.

Martin aka paused||M.E.

Senior Member
Messages
2,291
I’ve recently seen blood smears from ME patients and they look very different. You can see crowning and clotting of red blood cells here:
72E4183A-56CB-4ABC-8929-1168A0FEE69B.jpeg
97AB3DDE-F969-46BD-8006-D9B08CEE79AB.jpeg
 
SWAlexander

SWAlexander

Senior Member
Messages
1,455
Thanks. Would you have a link to these findings? I know because I have thrombosis, but labs don´t know how to test for Spherocytosis. If it is not TB, cystic fibrosis that stops oxidant it could only mean the blood cells are deformed. This is how Spherocytosis looks. little round balls, unable to care oxidant. These cells die earlier than normal blood cells.
1631274897619.png

or blood if the fuel we cannot live without. if there is damage and the possibility is big and often overlooked,

example
1631275226193.png
 
Last edited:
Martin aka paused||M.E.

Martin aka paused||M.E.

Senior Member
Messages
2,291
SWAlexander said:
Thanks. Would you have a link to these findings? I know because I have thrombosis, but labs don´t know how to test for Spherocytosis. If it is not TB, cystic fibrosis that stops oxidant it could only mean the blood cells are deformed. This is how Spherocytosis looks. little round balls, unable to care oxidant. These cells die earlier than normal blood cells.
View attachment 44670
or blood if the fuel we cannot live without. if there is damage and the possibility is big and often overlooked,

example
View attachment 44671
Click to expand...
I got them privately so I can’t provide any link I’m sorry.
 
SWAlexander

SWAlexander

Senior Member
Messages
1,455
Thanks anyway. I have seen many online, but this looks very little different - it´s a wash of many different kinds. Do some look like sickle cell disease?
 
SWAlexander

SWAlexander

Senior Member
Messages
1,455
Martin aka paused||M.E. said:
I was also surprised to see these... But maybe it doesn't look the same for every patient
Click to expand...

Of course, it is not the same for every patient.
A spinal tap (CSF bone marrow) could bring a answer. The same for Spherocytosis. These cells have, compared to the healty ones, a short life.
The question is how fast we can reproduce new ones to maintain oxidant supply?
 
Last edited:
percyval577

percyval577

nucleus caudatus et al
Messages
1,301
Location
Ik waak up
SWAlexander said:
This is how Spherocytosis looks. little round balls, unable to care oxidant. These cells die earlier than normal blood cells.
Click to expand...
This or something like this my uncle had. My aunt told me that his red blood cells would not take up oxygen that well, according to some lab. In my view, regarding his general appearance, he could be recognized as somewhat pre-ME. I also think - just my opinion - that it's a downstream effect.
 
SWAlexander

SWAlexander

Senior Member
Messages
1,455
Hereditary spherocytosis is a condition characterized by hemolytic anemia (when red blood cells are destroyed earlier than normal). Signs and symptoms can range from mild to severe and may include pale skin, fatigue, anemia , jaundice , gallstones, and/or enlargement of the spleen.

Fatigue may be a symptom of hereditary spherocytosis (HS) and is often associated with anemia in affected people. There is no cure for HS, but it can be treated.

Open Medicine Foundation (OMF): https://www.omf.ngo/red-blood-cell-deformability-in-me-cfs/

Many people I know show symptoms mentioned in this link but never were tested for these different kinds of blood conditions: https://www.healthline.com/health/congenital-spherocytic-anemia#symptoms

It also can lead to: "Blueberry Muffin Rash Secondary to Hereditary Spherocytosis" https://www.mdedge.com/dermatology/...uffin-rash-secondary-hereditary-spherocytosis
 
Last edited:
SWAlexander

SWAlexander

Senior Member
Messages
1,455
Yehhhhh.
I found the reason for my thrombosis.
Absolutely great. Thank you Lancet.
This could be the reason for my Thrombosis. Have F5 and X-cromo PIGA gene.

"Chronic Budd–Chiari syndrome in paroxysmal nocturnal haemoglobinuria"

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01542-7/fulltext

Laboratory investigations showed elevated liver enzymes: aspartate aminotransferase 164 U/L (normal 13–35), alanine aminotransferase 116 U/L (normal 7–38), total bilirubin concentration 2·9 mg/dL (normal 0·2–1·3). D-dimer concentration was raised at 11 420 ng/mL (normal <500), lactate dehydrogenase was 1 111 U/L (normal 135–214), and her haemoglobin concentration was low at 9·2 g/dL (normal 11·5–15·5).

A CT scan and MRI of the patient's abdomen showed splenomegaly with a heterogeneous appearance of the liver with hypointensity along the vascular territory, tapering occlusion of the hepatic veins, and focal narrowing at the level of the confluence (figure): findings consistent with chronic Budd–Chiari syndrome.

Now all I have to do is find a doctor who understands the treatment instruction.
 
Reading_Steiner

Reading_Steiner

Senior Member
Messages
245
I have enlargement of the spleen confirmed by CT Scan. They won't refer me to heamotology until I did more blood test to look for viruses, I haven't found the motivation to do that yet though, as i've done many blood tests in the past and got the hepatitis test last year.
 
SWAlexander

SWAlexander

Senior Member
Messages
1,455
Reading_Steiner said:
I have enlargement of the spleen confirmed by CT Scan. They won't refer me to heamotology until I did more blood test to look for viruses, I haven't found the motivation to do that yet though, as i've done many blood tests in the past and got the hepatitis test last year.
Click to expand...

Maybe more tests could reveal a secondary reason for an enlarged spleen. It does not always need to come to a splenectomy.
 
SWAlexander

SWAlexander

Senior Member
Messages
1,455
Reading_Steiner said:
I have enlargement of the spleen confirmed by CT Scan. They won't refer me to heamotology until I did more blood test to look for viruses, I haven't found the motivation to do that yet though, as i've done many blood tests in the past and got the hepatitis test last year.
Click to expand...

Found some reference regarding enlarged spleen. It could be "Hemoglobin C disease"
What is the link between the β globin gene and red blood cells?

The beta globin protein is one of the subunits of hemoglobin, a protein necessary for the oxygen-carrying function of red blood cells. People with the sickle cell mutation in both copies of the HBB gene produce proteins that clump together and lead to changes in the shape and behavior of red blood cells.
more at: https://medlineplus.gov/genetics/gene/hbb/
 
SWAlexander

SWAlexander

Senior Member
Messages
1,455
When I posted my suspicion (Sep 10, 2021) the first time about blood platelets deformation, I had no idea that I have in fact antiphospholipid syndrome (APS) and thrombosis.
Ever since I learn how many organs are affected, especially related to Covid and ME/CFS. According to several patients, doctors refuse to test because they don´t know how to deal with the lab results or treat the illness and appointments with a hematologist are weeks away.
 
You must log in or register to reply here.