How many of you have not found signs of persistent infection?

ChookityPop

Senior Member
Messages
527
Likes
686
Would be interesting to know how many find evidence of persistent infection vs those who dont.

The method to dicipher persistent infection in ME/CFS is different from healthy people. So if you consider yourself free of persistent infection I would appreciate if you could add that you would be considered positive for persistent infection by a ME specialist like HIP writes in the ME road map. https://mecfsroadmap.altervista.org/

The generel rule for persistent enteroviruses by Dr Chia is igg titers 16 times higher than the referance threshold. Though that number is not set in stone it could be used as an educated guess based on Dr Chia's calibration of the ARUP Lab coxsackievirus B and echovirus tests.

« But to an ME/CFS specialist, low IgM with chronically high IgG signifies there may be ongoing active infection in the tissues — not a normal active infection which produces lots of viral particles, but a chronic active infection in the form of a non-cytolytic enterovirus infection, an abortive herpesvirus infection, or a partial reactivation of a virus.»

Extra Rule for Interpreting Antibody Levels in ME/CFS:
IgM: Low
IgG: High


Interpretation:
Chronic low-level active infection in the tissues.
This fourth rule is a controversial though, as some researchers believe the high IgG antibody levels in ME/CFS are of no significance, and do not believe ME/CFS is caused by ongoing infection. However in the case of enterovirus ME/CFS, there is considerable evidence
for chronic active low-level infection in the tissues, which are the likely cause of these chronically high IgG.»
 
Last edited:

nerd

Senior Member
Messages
863
Likes
2,532
I have persistent antiviral immune activation with low NK cell count. My immune system tries to fight something. I'm also strongly positive for EBI-2 which is relatively specific for EBV and EBV-associated autoimmune diseases. I can imagine that other gamma-herpes viruses might also be responsible. Markers for acute EBV have always turned out negative (IgM) but my IgGs have gradually increased ever since. Lymphocyte transformation tests (LTTs) indicate that there's no T cell activation against EBV, CMV, HPV, or Borreliosis. Borreliosis wasn't conclusive though.

Either my immune system is infiltrated by a pathogen so that the LTTs are false-negative or it's borreliosis and EBV is just opportunistically co-activated. I'm genetically predisposed for "antibiotics-resistant rheumatic borreliosis" as they call it. Lymphocyte count profiles sometimes also spike in the direction of bacterial infection and not necessarily viral infection but this might be just due to my persistent ear infection, still TBD.

Epstein-Barr Virus Induced Gene-2 Upregulation Identifies a Particular Subtype of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (2019) [10.3389/fped.2019.00059]
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a chronic multisystem disease characterized by a variety of symptoms, and exhibits various features of an autoimmune-like disease. Subtypes are well recognized but to date are difficult to identify objectively. The disease may be triggered by infection with a variety of micro-organisms, including Epstein-Barr virus (EBV). A subset of CFS/ME patients exhibit up regulation of EBV virus induced gene 2 (EBI2) mRNA in peripheral blood mononuclear cells (PBMC), and these patients appear to have a more severe disease phenotype and lower levels of EBNA1 IgG. EBI2 is induced by EBV infection and has been found to be upregulated in a variety of autoimmune diseases. EBI2 is a critical gene in immunity and central nervous system function; it is a negative regulator of the innate immune response in monocytes. Its heterogeneous expression in CFS/ME could explain the variable occurrence of a variety of immune and neurological abnormalities which are encountered in patients with CFS/ME. The EBI2 subtype occurred in 38–55% CFS/ME patients in our studies. Further work is required to confirm the role of EBV and of EBI2 and its oxysterol ligands in CFS/ME, and to identify the most practical means to identify patients of the EBI subtype. There are two EBI2 antagonists currently in development, and these may hold promise in the treatment of CFS/ME patients of the EBI subtype.
 
Last edited:

seamyb

Senior Member
Messages
560
Likes
1,312
Putting biofilm busters up my nose causes me to crash so I think that's evidence of persistent infection.

Honestly, unless you're somehow genetically screwed, I can't see how a person can go from healthy to CFS without an active, chronic infection. Loops, traps, feedback mechanisms, I just don't buy it. Every chance I'm wrong, but what it feels like to me is that there is something signalling to our immune systems, not to mention whatever toxins your infection of choice unleashes.
 

Wishful

Senior Member
Messages
4,537
Likes
8,271
Location
Alberta
I have no evidence of persistent infection either. I've only had a couple of viral infections since 2001, and they made my ME symptoms worse, but those returned to 'normal' after the virus passed.

I'm definitely on the side of locked in feedback loops. From an engineering perspective, it's amazing that we don't suffer more of them.
 

ChookityPop

Senior Member
Messages
527
Likes
686
I have no evidence of persistent infection.
Can I ask if you have any high igg titers and low/negative igm in any of the usual suspects like CMV, HHV6, enterovirus (coxsackie virus and echovirus), VZV etc?

And if you would maybe be considered positive for persistent infection by a ME specialist explained in the road map: https://mecfsroadmap.altervista.org/notes.html#viral-testing-notes


Just adding that enteroviruses has to be tested with a neutralization test since ELISA etc is not sensitive enough.
 

ChookityPop

Senior Member
Messages
527
Likes
686
I have no evidence of persistent infection either. I've only had a couple of viral infections since 2001, and they made my ME symptoms worse, but those returned to 'normal' after the virus passed.

I'm definitely on the side of locked in feedback loops. From an engineering perspective, it's amazing that we don't suffer more of them.
Can I ask if you have any high igg titers and low/negative igm in any of the usual suspects like CMV, HHV6, enterovirus (coxsackie virus and echovirus), VZV etc?

And if you would maybe be considered positive for persistent infection by a ME specialist explained in the road map: https://mecfsroadmap.altervista.org/notes.html#viral-testing-notes

Just adding that enteroviruses has to be tested with a neutralization test since ELISA etc is not sensitive enough.
 

heapsreal

iherb 10% discount code OPA989,
Messages
9,699
Likes
9,850
Location
australia (brisbane)
Reoccurring shingles, a significant rash to a line of red spots along the side of my head.
Consistently elevated T cell subsets since i started testing them in approx 2007 to 2015(cfs onset 2002), mostly normal since 2015 from memory.
Low nk function.
Chronically Low neutrophils.
 
Messages
2,284
Likes
7,541
Yep.
I have first very high titers for VZV (2018, when I became bedridden above 2000 now above 1200, so I think of a reactivation), and inconsistent findings around EBV and HHV-6 which i still investigate.

But the most obvious is Coxsackie B4 1:640 and related Interferon activity (look at my interferons and gene expression of interferons at Chia's presentation at IACFS/ME).

Furthermore very high titers for some mycotoxins and a bacterial overgrowth in kidneys or bladder, don’t know yet.
A830FD32-4AB2-42E9-9A04-FF60AC0C9306.jpeg
753EA981-FBFE-40A8-846A-9EC86D36EDD7.jpeg
 

heapsreal

iherb 10% discount code OPA989,
Messages
9,699
Likes
9,850
Location
australia (brisbane)
Can I ask if you have any high igg titers and low/negative igm in any of the usual suspects like CMV, HHV6, enterovirus (coxsackie virus and echovirus), VZV etc?

And if you would maybe be considered positive for persistent infection by a ME specialist explained in the road map: https://mecfsroadmap.altervista.org/notes.html#viral-testing-notes

Just adding that enteroviruses has to be tested with a neutralization test since ELISA etc is not sensitive enough.
Ebv was one of 3 viral infection during cfs onset. In 2002 had igm and igg positive antibodies to ebv. About 5 yrs later seeing another dr with more of an interest in cfs, he retested all the common cfs viruses. Ebv igg negative, supposedly life long antibodies. Sorry no titre levels given in Australia.
 

Learner1

Senior Member
Messages
6,262
Likes
11,601
Location
Pacific Northwest
Ebv was one of 3 viral infection during cfs onset. In 2002 had igm and igg positive antibodies to ebv. About 5 yrs later seeing another dr with more of an interest in cfs, he retested all the common cfs viruses. Ebv igg negative, supposedly life long antibodies. Sorry no titre levels given in Australia.
I had negative EBV EA and EBNA antibodies but positive PCR and VCA IgG. Treatment with Valcyte was a game changer.
 

seamyb

Senior Member
Messages
560
Likes
1,312
I'd be interested to hear about people's symptoms.

I feel as if I'm being poisoned. I do have generalised fatigue also, but my main symptom is a real sick, poisoned feeling which can really be overwhelming.

Do the non-infection folks have this symptom? If so, do they believe the immune system can cause it? I'm not talking about fever etc, it's like I had novichok for breakfast.