How likely is the presence of enterovirus without GI symptoms?

Shanti1

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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.
 
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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

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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

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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

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@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

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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

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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

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@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

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@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.
 

SWAlexander

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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

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"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

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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. ...