• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Anyone here have lupus or Type 1 diabetes?

sometexan84

Senior Member
Messages
1,235
Was just curious why I don't see many people on here w/ Lupus (SLE) or Type 1 Diabetes. Then I thought maybe more have it than I realized?

I'm of the opinion that Enterovirus is the cause of a large portion of those w/ ME/CFS. And that Enterovirus is the primary cause of lupus and Type 1 diabetes as well. And chronic fatigue is huge in T1D and Lupus. So I thought, well if that is true, then why don't more people here on PR forum have Lupus (SLE) and T1D?

I was thinking maybe those diagnosed w/ T1D or Lupus might be less likely to find and join this forum because, well, they already know what's causing they're illness. Thoughts?

Just curious and hoping to gain further insight.
 

sometexan84

Senior Member
Messages
1,235
When I had my HLA disease risk alleles tested, so I could find what diseases I'm genetically high risk for, I found that they were mostly Enterovirus related diseases (eg rheumatoid arthritis, lupus, T1D, etc)

I came to the conclusion that I must have a genetic tendency towards allowing Enterovirus (or similar) to form a constant presence in my body. So perhaps I have IFN signaling genes that are faulty or something along those lines
 

Seadragon

Senior Member
Messages
804
Location
UK
Not Lupus as tested negative for the specific antibody but I have low positive ANA, high positive RF and low positive ASMA and intermittent positive Sed Rate as well as significantly raised Calprotectin.

Never found out what is at the bottom of all this, just keep getting the ME diagnosis. I do have significant exhaustion and PEM (though in my case it is instant not next day) but believe there is more to my illness than that as I have many symptoms that cannot be attributed to ME alone.

Tested negative for enteroviruses many years ago though...
 

Violeta

Senior Member
Messages
2,956
When I had my HLA disease risk alleles tested, so I could find what diseases I'm genetically high risk for, I found that they were mostly Enterovirus related diseases (eg rheumatoid arthritis, lupus, T1D, etc)

I came to the conclusion that I must have a genetic tendency towards allowing Enterovirus (or similar) to form a constant presence in my body. So perhaps I have IFN signaling genes that are faulty or something along those lines
I realize you probably don't have Hep C, but this might extrapolate to other IFN issues.

https://pubmed.ncbi.nlm.nih.gov/27716962/
 

L'engle

moogle
Messages
3,229
Location
Canada
A lupus diagnosis requires several tests to be positive. If you only have some autoimmune tests, you get... no diagnosis. It is all or nothing and I suspect leaves out a certain number of people who have autoimmunity but not enough to trigger all the tests.