Well, when I finally get my autoantibody results back, I'll probably be positive for antibodies against 1 or more of the following:
ganglionic acetylcholine receptor (alpha 3), beta 1 or 2 adrenergic receptor, muscarinic acetylcholine receptors 2-4, alpha 1 adrenergic receptor, voltage gated calcium channel, voltage gated potassium channel, and NMDA receptor.
I'm guessing when that happens, they'll prob start me off on IVIG, and go from there.
The immune system is going to have a hard time getting control over EBV reactivation, or taking care of Enterovirus if you have major autonomic dysfunction. So we have to fix those autoantibodies. Then fix what caused them, the infections.
And you have to fix other autoimmune conditions to stabilize the immune system. EVB caused my TPO antibodies for Hashimoto's for example. And now I have Saccharomyces cerevisiae antibodies. That plus my GI symptoms, plus other things suggest I now likely have Crohn's disease, or something similar. So that has to be taken care of too.
The term ME/CFS is going to disappear. ME/CFS means "we don't know why you're tired". In a few yrs, ME/CFS will have been split out into a lot of specific diseases, most of which will be autoimmune. They're still discovering new auto-antibodies, and then labeling with a specific condition, a new name to say this is the illness you have. This is what's going to be happening.
Like HSP-60 (Heat Shock Protein 60). There is literally no commercial test available for this. It's only for research at this point. 1 or 2 yrs from now, there might be a name for those with auto-antibodies to HSP60. You'll be able to test for it at Quest and LabCorp. If you're positive, then you have HSP Encephalitis, or something like that.
Post-exertional malaise is not unique to ME/CFS. Nothing is. They can't find consistent overlapping symptoms or infections. It's because ME/CFS is not really a thing.
We're just a bunch of people with undiagnosed Lyme, Sjögren's syndrome, autonomic neuropathies, hypothyroidism, POTS, cancer, anemia, lambert-eaton myasthenic syndrome, antiphospholipid syndrome or thrombocytopenia, pure autonomic failure and orthostatic hypotension, multiple system atrophy, amyloidosis, small fiber polyneuropathy, multiple sclerosis, diabetes, celiac, lupus, arthritis, and a bunch of "syndromes" that don't exist yet on paper. Most of which are auto-immune related.
I guarantee you, if everyone on this forum went and got 30 or 40 auto-antibody tests, 75%+ would be abnormally positive for something significant.
The symptoms we have are not from infections. They're from the autoimmune conditions caused by the infections. And likely, we all have genetic autoimmune susceptibilities. That's why everyone should go get their HLA risk alleles tested.
Here are mine. Or rather, the notes I've made on my HLA Alleles....
My Individual Alleles
A*32:01:01
B*08:01:01
Non-Paraneoplastic Lambert-Eaton myasthenic syndrome LEMS (NP-LEMS) - 69% of non-paraneoplastic LEMS vs. 23% of the control group (p < 0.001), and 12% of paraneoplastic LEMS
https://pubmed.ncbi.nlm.nih.gov/21243240/
Early-onset myasthenia gravis (EOMG) – 33% vs 13% in HC
https://autoimmunhighlights.biomedcentral.com/articles/10.1186/s13317-019-0124-6
Polymyositis and anti-Jo-1 autoantibody-positive myositis
https://www.nature.com/articles/gene201528.pdf?origin=ppub
Asymmetric Sacroiliitis
https://acrabstracts.org/abstract/h...llow-up-study-examining-clinical-and-genetic/
Collagenous colitis (CC)
https://mayoclinic.pure.elsevier.co...is-associated-with-hla-signature-and-shares-g
Grave’s disease – 8.8% vs 2.5%
https://pubmed.ncbi.nlm.nih.gov/28919585/
B*15:01:01
C*03:03:01
[Protective] Graves’ disease - OR = 0.54
https://pubmed.ncbi.nlm.nih.gov/17597093/
C*07:01:01
Graves’ disease - OR = 1.63
https://pubmed.ncbi.nlm.nih.gov/17597093/
DPA1*01:03:01
DPB1*04:01:01
DPB1*04:02:01
DPB1*105:01:01
DPB1*126:01:01
DQA1*03:01:01
Parkinson’s disease
https://www.medrxiv.org/content/10.1101/2020.10.29.20217059v1.full
DQA1*04:01:01
DQB1*03:02:01
Parkinson’s disease
https://www.medrxiv.org/content/10.1101/2020.10.29.20217059v1.full
Celiac disease
https://www.nature.com/articles/pr2017307
DQB1*04:02:01
DRB1*04:01:01
Multiple sclerosis
Rheumatoid arthritis
Type 1 diabetes
Lyme disease induced arthritis
https://en.wikipedia.org/wiki/HLA-DR4
Parkinson’s disease
https://www.medrxiv.org/content/10.1101/2020.10.29.20217059v1.full
Anticentromere autoantibody (ACA) in Scleroderma
https://www.nature.com/articles/6363734.pdf?origin=ppub
DRB1*08:01:01
Primary biliary cirrhosis
https://en.wikipedia.org/wiki/HLA-DR8
Anticentromere autoantibody (ACA) in Scleroderma
https://www.nature.com/articles/6363734.pdf?origin=ppub
DRB4*01:03:01
Erythema multiforme
Crohn's disease
Myasthenia gravis
Rheumatoid arthritis
Hashimoto's thyroiditis
Vitiligo
Primary biliary cirrhosis
Vogt-Koyanagi-Harada disease
https://en.wikipedia.org/wiki/HLA-DR53
My Serotypes/Haplotypes
DQ8 (DQA1*03:01 - DQB1*03:02) Freq: 9.62% in Caucasian Americans
Type 1 Diabetes
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6678473/
Celiac disease
https://www.verywellhealth.com/hla-dq8-one-of-the-main-celiac-disease-genes-562571
DQ4.4 (
DQA1*04:01 - DQB1*04:02) Freq: 2.26% in Caucasian Americans
DQ4.3 (DQA1*03:01 - DQB1*04:02) Freq: 0.03% in Caucasian Americans
DR4 (DRB1*04:01)
Rheumatoid arthritis
Pemphigus foliaceus
Obstructive hypertrophic cardiomyopathy
IgA nephropathy -
P=0.005
'shared syndrome'-systemic sclerosis/rheumatoid arthritis
Polymyalgia rheumatica
https://en.wikipedia.org/wiki/HLA-DR4
Hashimoto’s - OR=1.98
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2647156/
DR4-DQ8 (DRB1*04:01 - DQA1*03:01 - DQB1*03:02)
Juvenile diabetes
Coeliac disease
Rheumatoid arthritis
https://en.wikipedia.org/wiki/HLA-DR4
DQ4-DR8 (DRB1*04 - DRB1*08)
Papillary thyroid carcinoma - DQ4 12.8% vs. 3.5%, DR8 10.9% vs. 4.3%
https://pubmed.ncbi.nlm.nih.gov/16430717/
DR8 (DRB1*08:01)
Systemic lupus erythematosus
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2647156/
Graves’ disease - P = 0.001
https://pubmed.ncbi.nlm.nih.gov/10487684/
DR53 (DRB4*01:03)
A32 (A*32:01)
B8 (B*08:01)
B15 (B*15:01)
Cw7 (C*07:01
Cw9 (C*03:03