How likely is the presence of enterovirus without GI symptoms?

[Shanti1]

I believe my ME/CFS was triggered by mono and I have improved with valacyclovir, I was negative for high titers to HHV-6, Parvovirus, and CMV.

I am thinking about pursuing enterovirus testing through ARUP. For those of you who tested positive for enteroviruses, did you have GI symptoms that you associate with the virus? I do not have GI symptoms.

 

[Martin aka paused||M.E.]

I believe my ME/CFS was triggered by mono and I have improved with valacyclovir, I was negative for high titers to HHV-6, Parvovirus, and CMV.

I am thinking about pursuing enterovirus testing through ARUP. For those of you who tested positive for enteroviruses, did you have GI symptoms that you associate with the virus? I do not have GI symptoms.

Sometimes yes, sometime no. But I'm positive for CB4.

 

[sometexan84]

I believe my ME/CFS was triggered by mono and I have improved with valacyclovir, I was negative for high titers to HHV-6, Parvovirus, and CMV.

I am thinking about pursuing enterovirus testing through ARUP. For those of you who tested positive for enteroviruses, did you have GI symptoms that you associate with the virus? I do not have GI symptoms.

That's a great question.

I'm positive for CVB2, 3, 4, and Echo 11.

I honestly did not have noticeable GI symptoms for like 1-2 yrs. I never even had pain symptoms. I only got GI, pain, and LOT more autonomic symptoms in 2021... most of this started after my experiment where I stopped all my meds and supplements.

But almost everyone with long-time ME/CFS well tell you of GI symptoms. Even in Long Covid, some of them didn't have GI symptoms.

Likelihood of Enterovirus w/out GI symptoms in first few years: Somewhat likely

Likelihood of Enterovirus w/out GI symptoms after 10+ yrs of ME/CFS: Very unlikely

 

[Hip]

did you have GI symptoms that you associate with the virus?

I had severe IBS-D many years prior to catching the CVB4 virus which triggered my ME/CFS.

I have very high antibody titers to CVB4, but this virus caused no additional intestinal symptoms, apart from some chronic odorless flatulence (which it also caused in others who caught the same virus from me), and in the early years, some very mild recurrent stomach aches.

However:

Dr Chia says that a fairly reliable sign of chronic enterovirus infection of the abdomen in ME/CFS patients is abdominal tenderness or pain in the epigastric area, in the right lower quadrant, and in the left lower quadrant (see the three X's in the abdomen picture).

Epigastric pain or tenderness indicates enterovirus infection of the stomach. Right lower quadrant pain or tenderness suggests enterovirus infection of the terminal ileum. Left lower quadrant pain or tenderness suggests enterovirus infection in the small bowel or colon.

Source: here

 

[Shanti1]

@Hip @sometexan84 @Martin aka paused||M.E. Thank you all for your helpful responses. ME/CFS has been creeping up on me for decades, but it is only the last 2.5 years that I've developed true PEM and other full symptoms. I'll be seeing Dr. Bested at the Institute for NeuroImmune Medicine in Florida in Oct and will see if she will order the testing for me.

 

[Hip]

ME/CFS has been creeping up on me for decades, but it is only the last 2.5 years that I've developed true PEM and other full symptoms.

Have you been checked for other diseases which could cause ME/CFS-like symptoms (like hypothyroid, anemia, celiac disease, etc). A good doctor can do this. It's not that often that you see an ME/CFS patient say that their illness to decades to appear, so it may be worth checking that you do not have some other condition which is very slowly manifesting.

In some cases, ME/CFS appears within days after a viral infection (rapid onset). In other cases, it may appear months or years after an infection.

You could have ME/CFS, but it's worth checking for other conditions, as these are usually much more treatable than ME/CFS.

 

[Shanti1]

Have you been checked for other diseases which could cause ME/CFS-like symptoms (like hypothyroid, anemia, celiac disease, etc). A good doctor can do this. It's not that often that you see an ME/CFS patient say that their illness to decades to appear, so it may be worth checking that you do not have some other condition which is very slowly manifesting.

Thanks for checking Hip, always good to ask. Yes, I have been checked for anemia, vit deficiencies, celiac, adrenal function, thyroid (full panel), lyme (IGENX), lots of autoimmune tests, methylation snps, metabolic disorders, Biotoxic mold panels (Shoemaker), comprehensive stool analysis, steroid hormones, IGF-1, cytokine panels, multiple food sensitivity panels, HHV6, parvo, CMV....... you name it, I have probably had it tested!

According to my labs, I am a picture of health! Only abnormalities are above the detection limit EBV titers, below the detection limit ADH, and high urinary lactate.

I did have slow onset, but there were also distinct stress events, each of which brought me to a new plateau of symptoms from which I didn't recover. Main symptoms are profound fatigue, lymphadenopathy (resolved with valacyclovir), low-grade fever, PEM, brain-fog, and upper back/shoulder pain.

Thank you.

 

[Shanti1]

@Hip BTW, thank you for putting together the roadmap, I found it extremely useful to orient me as I've started on this journey. Also, thanks for your service on this forum and sharing of knowledge collected over the years. I'm so thankful for you and all the members here.

 

[Hip]

@Hip BTW, thank you for putting together the roadmap, I found it extremely useful to orient me as I've started on this journey. Also, thanks for your service on this forum and sharing of knowledge collected over the years. I'm so thankful for you and all the members here.

Glad you found the roadmap useful.

Yes, Phoenix Rising is a great resource for help and information, isn't it.

 

[Shanti1]

Yes, Phoenix Rising is a great resource for help and information, isn't it.

Honestly, it brings tears to my eyes to see all of the people here for whom the medical world has thrown up their hands, helping each other to put together the pieces of this extraordinarily complex and debilitating condition.

 

[SWAlexander]

Thanks for checking Hip, always good to ask. Yes, I have been checked for anemia, vit deficiencies, celiac, adrenal function, thyroid (full panel), lyme (IGENX), lots of autoimmune tests, methylation snps, metabolic disorders, Biotoxic mold panels (Shoemaker), comprehensive stool analysis, steroid hormones, IGF-1, cytokine panels, multiple food sensitivity panels, HHV6, parvo, CMV....... you name it, I have probably had it tested!

According to my labs, I am a picture of health! Only abnormalities are above the detection limit EBV titers, below the detection limit ADH, and high urinary lactate.

I did have slow onset, but there were also distinct stress events, each of which brought me to a new plateau of symptoms from which I didn't recover. Main symptoms are profound fatigue, lymphadenopathy (resolved with valacyclovir), low-grade fever, PEM, brain-fog, and upper back/shoulder pain.

Thank you.

"and upper back/shoulder pain." Any pain when you reach up (combing hair or lifting something above your head)? Are you have muscles popping out from under the shoulder?

 

[Shanti1]

"and upper back/shoulder pain." Any pain when you reach up (combing hair or lifting something above your head)? Are you have muscles popping out from under the shoulder?

It is a more recent symptom, just a constant feeling, not associated with any particular movement, no popping. At this point, I would rate it as noticeably present and disconcerting, but not hugely impactful to my quality of life. Going to try some magnesium oil on it.

 

[SWAlexander]

It is a more recent symptom, just a constant feeling, not associated with any particular movement, no popping. At this point, I would rate it as noticeably present and disconcerting, but not hugely impactful to my quality of life. Going to try some magnesium oil on it.

same here. It was not too bad in the beginning but it got worse, just because I ignored it. It is called "scapula syndrome" and can sometimes take 3 to 6 months. In my case, it escalated to: "snapping scapula syndrome"

Relieving the Pain Under Your Shoulder Blade

1. Rest your upper back from activity. If your pain worsens when you do certain movements or physical activities, such as household chores or exercise, rest for a day or two. ...
2. Apply ice and/or heat. ...
3. Take over-the-counter (OTC) medication. ...
4. Massage it out. ...

 

[Shanti1]

@SWAlexander thank you, I will consider this. I agree, addressing things early is very important.

 

[Shanti1]

I was able to ask my question in the chat at the IACFS/ME conference today:

Question:
Do ME/CFS patients with EV as an underlying etiology have a history of or current presentation of GI issues or is it possible to have persistent EV without any GI involvement?

Dr. Chia's Answer:
Most patients would have GI symptoms or abdominal tenderness over stomach, lower abdomen (R or L), but some only have upper or lower respiratory symptoms. Rarely, no GI or resp. symptoms or findings.

 

[hapl808]

Do ME/CFS patients with EV as an underlying etiology have a history of or current presentation of GI issues or is it possible to have persistent EV without any GI involvement?

My ME/CFS started with GI symptoms and worsened over the years into other stuff. So conversely, would that likely indicate EV involvement (and to try antiviral medications)? The only 'antiviral' stuff I've used is like andrographis, artemesinin, allicin, etc. I've considered oxymatrine, equilibriant, or other rx antivirals. Unfortunately I can't tolerate blood work anymore, so looking for something I can do relatively safely without checking liver enzymes, etc.

 

[hapl808]

Also one thing that I've never been clear about: I don't get cold sores (exterior), but any time I bite my lip or cheek it will turn into a painful canker sore that takes weeks to heal. Is that diagnostic in any way? Makes me think my oral microbiome is disturbed in some way, but as I recall when I looked it up there was nothing conclusive. Just an "Oh yeah, that can happen" type response.

 

[Shanti1]

My ME/CFS started with GI symptoms and worsened over the years into other stuff.

Chia seemed to indicate that some diffuse GI tenderness or respiratory symptoms would persist. Both Coxsackie B and echovirus (the two most commonly implicated) can cause diarrhea as an initial acute infection, but I do not know if all EV induced ME/CFS has an identifiable acute "stomach flu" associated with onset.

EV is hard to test for. In the talk today Dr. Chia said he rarely does stomach biopsy or even ARUP lab antibodies. His lab is now testing for viral protein inside specific WBC subtypes, testing which is not commercially available.

Dr. Chia today said about 30-40% of people respond to equilibrant (oxymatrine), so that might be worth trying. I believe it helped me with EBV. Hip's road map gives a nice summary of the other antivirals to consider.

In his talk today Dr. Chia expressed interest in remdesivir due to two reports of temporary ME/CFS remissions when remdesivir was given for COVID. He hopes there will eventually be a more accessible oral version that could be trialed.

Also one thing that I've never been clear about: I don't get cold sores (exterior), but any time I bite my lip or cheek it will turn into a painful canker sore that takes weeks to heal. Is that diagnostic in any way? Makes me think my oral microbiome is disturbed in some way, but as I recall when I looked it up there was nothing conclusive.

No pathogen has, to date, been found to be associated with cold sores, but I agree they are a sign of some sort of immune dysfunction. My husband, who has ulcerative colitis, but who is in remission, will get them if his GI starts to act up. They also seem to happen when people are under stress or the immune system is "low".

 

[CSMLSM]

No pathogen has, to date, been found to be associated with cold sores, but I agree they are a sign of some sort of immune dysfunction. My husband, who has ulcerative colitis, but who is in remission, will get them if his GI starts to act up. They also seem to happen when people are under stress or the immune system is "low".

Off the top of my head I believe many pathogens respond to the detection of cortisol as a marker for when it is a good time to replicate. Old faint memories of HIV being one for sure but many I believe have this adaptation of being able to detect cortisol.

The effect of the stress hormone cortisol on the metatranscriptome of the oral microbiome | npj Biofilms and Microbiomes (nature.com)
Abstract
Imbalances of the microbiome, also referred to as microbial dysbiosis, could lead to a series of different diseases. One factor that has been shown to lead to dysbiosis of the microbiome is exposure to psychological stressors. Throughout evolution microorganisms of the human microbiome have developed systems for sensing host-associated signals such as hormones associated with those stressors, enabling them to recognize essential changes in their environment, thus changing their expression gene profile to fit the needs of the new environment. The most widely accepted theory explaining the ability of hormones to affect the outcome of an infection involves the suppression of the immune system. Commensal microbiota is involved in stressor-induced immunomodulation, but other biological effects are not yet known. Here we present the impact that cortisol had on the community-wide transcriptome of the oral community. We used a metatranscriptomic approach to obtain first insights into the metabolic changes induced by this stress hormone as well as which members of the oral microbiome respond to the presence of cortisol in the environment. Our findings show that the stress hormone cortisol directly induces shifts in the gene expression profiles of the oral microbiome that reproduce results found in the profiles of expression of periodontal disease and its progression.