ME/CFS and the Change of Seasons: How Does This Affect You?
The advent of autumn can hit Jody Smith pretty hard. She's learned a few ways to lessen the damage every year. How do you handle the change of seasons?
Discuss the article on the Forums.

1:16 titer for Coxsackie B; should I be concerned?

Discussion in 'General ME/CFS Discussion' started by AlwaysTired, May 22, 2018.

  1. AlwaysTired

    AlwaysTired Senior Member

    Messages:
    174
    Likes:
    246
    Going on fourth year with CFS, but first time being tested for the Coxsackie viruses. Only B2 came up positive. Confused by result because the results sheet says that this ratio can indicate past infection or recent, but then says virus only detectable 3-4 months after infection.

    I did have stomach flu the week before my CFS started back in March of 2015, but haven't had it since. So i don't know how to interpret these results or even if the titer is enough for me to be concerned (particularly about endocarditis or getting more serious GI issues like leaky gut at some point)

    I am looking at it as a cause of fatigue though, especially since my EBV titers continue to say "no virus detected"
     
    Last edited: May 22, 2018
  2. Hip

    Hip Senior Member

    Messages:
    11,159
    Likes:
    18,758
    Which lab and which type of test was this?
     
    AlwaysTired likes this.
  3. AlwaysTired

    AlwaysTired Senior Member

    Messages:
    174
    Likes:
    246
    Quest labs. Not sure what you mean by type?
     
  4. Ema

    Ema Senior Member

    Messages:
    4,718
    Likes:
    6,923
    Midwest USA
    They need to go to ARUP in the US, http://ltd.aruplab.com/Tests/Pub/0060055.

    http://cfspatientadvocate.blogspot.com/2013/03/closing-loop_18.html
     
    adambeyoncelowe, AlwaysTired and Hip like this.
  5. Hip

    Hip Senior Member

    Messages:
    11,159
    Likes:
    18,758
    Antibody tests can be performed by different methods: neutralization is the gold standard and most sensitive method; but there is also ELISA, IFA and CFT, which are less sensitive methods. CFT is the least sensitive.

    Dr John Chia found that the micro-neutralization method used by ARUP Labs was able to reliably detect the chronic active enterovirus infections in ME/CFS patients, whereas the other antibody methods were not so reliable.

    If this Quest test was the one you took, then it looks like it is CFT (complement fixation test), which would not be sufficiently sensitive to detect the chronic enterovirus infection in ME/CFS.



    When I first developed ME/CFS and got a test for coxsackievirus B, I used CFT (as I did not know any better), and this was negative. But when I later learnt a bit more about testing in ME/CFS, and had an antibody neutralization test, I found high titers (1:1024) to coxsackievirus B4.

    So this just shows that you need to get the right test if you are going to detect chronic enterovirus in ME/CFS.
     
    Last edited: May 25, 2018
    AlwaysTired likes this.
  6. denlander

    denlander

    Messages:
    84
    Likes:
    207
    Past exposure of viruses are frequently seen in ME CFS. Most commonly the five viruses that have been studied in ME CFS are EBV, HHV6, CMV, Coxsackie B, and Parvo B19. Historically coxsackie virus was considered by Dr Melvin Ramsay as the possible cause of ME in 1955 when he used the term Post Viral Fatigue.
    The coxsackie virus is a past infection no anti viral treatment is required. It can perhaps have afflicted the immune system and created your symptoms.
    Derek Enlander MD
    New York
     
    AlwaysTired likes this.
  7. Hip

    Hip Senior Member

    Messages:
    11,159
    Likes:
    18,758
    Numerous studies in the UK in 1980s and 90s, as well as more recent studies by John Chia, indicate that coxsackievirus B and echovirus can exist as a chronic low-level active non-cytolytic infection in the muscle tissues, intestinal tissues and brain tissues of ME/CFS patients.

    If you perform enterovirus PCR testing on the blood, you often will get a negative result in ME/CFS; but if you perform PCR on infected tissues via biopsy (as the British researchers did), then it will often be positive. The high titers found on antibody neutralization tests are likely caused by these tissue infections.
     
    Last edited: Sep 28, 2018
  8. AlwaysTired

    AlwaysTired Senior Member

    Messages:
    174
    Likes:
    246
    So I just called my ID doctors office and asked for my enterovirus tests to be re ordered and sent to ARUP. They said they are only contracted with Sonora-quest and LabCorp, but they can mail the order to ARUP if I give an address but I would have to physically go there to have my blood drawn. My insurance (Medicaid) only covers me in Arizona, so that won't work. They also seemed to think that SQ and Labcorp results are accurate...

    Trying to see if either can do send out to ARUP.
     
    Last edited: May 24, 2018
  9. Hip

    Hip Senior Member

    Messages:
    11,159
    Likes:
    18,758
    If you go ahead with this, do triple check that Quest or LabCorp are actually sending you blood serum sample to ARUP. @Ema had the experience of ordering an ARUP test through Quest or LabCorp, but the test was not actually done at ARUP. Your test results page should mention that the test was done at ARUP.


    Are you sure you cannot just get blood drawn locally and courier you serum sample to ARUP? I believe provided the serum sample arrives at ARUP within 48 hours, it's fine.

    The two ARUP tests are here: coxsackievirus B and echovirus. CVB is more important than echovirus (because CVB is more commonly linked to ME/CFS than echovirus); but ideally you would want both tests done.

    Antibody titers of 1:320 and higher in these ARUP tests are good indicators of chronic active infection in the tissues, Dr Chia found. Ref: 1 In the specific case of coxsackievirus B4, Dr Chia uses titers of 1:640 and higher as the diagnostic threshold for active infection.
     
    Last edited: May 24, 2018
    AlwaysTired and Ema like this.
  10. Ema

    Ema Senior Member

    Messages:
    4,718
    Likes:
    6,923
    Midwest USA
    I would try calling ARUP directly to find out if they are contracted with Labcorp or Quest in your area. Then your doctor can write the order, specifying "Send to ARUP ONLY", and you can be covered by your insurance as long as your diagnosis codes provide coverage. You would just go to LabCorp or Quest for the draw as normal.

    I am very grateful to @Hip for noting on my lap results that they did not say ARUP, even though the order had specified it. Twice. It does seem to take some persistence.
     
    AlwaysTired and Hip like this.
  11. Ema

    Ema Senior Member

    Messages:
    4,718
    Likes:
    6,923
    Midwest USA
  12. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

    Messages:
    2,771
    Likes:
    4,066
    USA
    I was in the same boat, For me, I can tell is an active infection because I get very bad acid reflux and when it is REALLY bad I get bumps (very little ones) on the roof of my mouth. I did equilibrant and it took care of it (the labs will tell you when it goes back down). I have it on and off, but I don't test anymore, I can tell by my symptoms and increase equilibrant (supplement) until it goes away, I keep on 2 a day for maintenance.
     
    AlwaysTired likes this.
  13. AlwaysTired

    AlwaysTired Senior Member

    Messages:
    174
    Likes:
    246
    Sonora Quest will only send to ARUP if you have a kit. Called ARUP to see who they're contracted with here and turns out to be a hospital i went to see a rheumatologist at. Called to schedule appt with rheumatologist to ask for these tests (he's pretty nice so I think he'll do it). Lucked out and got an appointment for this afternoon (would be looking at July otherwise). Happen to feel well enough to leave house today, so I hope he'll order the tests since the hospital is contracted with ARUP
     
  14. AlwaysTired

    AlwaysTired Senior Member

    Messages:
    174
    Likes:
    246
    TBH I was surprised I tested positive at all. I don't have an symptoms like that, nothing really GI, and I don't have any cardiac issues or at least it doesn't seem like it. Brain fog, fatigue, OI, weakness and migraine are the only symptoms I deal with (unless you want to include anxiety, but that's been something I've had my entire life so I don't think it's being caused by whatever caused my CFS). I thought I might be hypoxic but my serum O2 always comes out between 98-100%.
    CBC always normal. MRI normal. Sleep study-normal. Trying to get tilt table test but I expect that too, will be normal.

    Getting so tired of having to justify to this ID doctor and her office why I want the tests I want. Tired of medicine lagging behind the reality of this disease as long time veterans and CFS specialists know it to be.
     
    Last edited: May 24, 2018
  15. halcyon

    halcyon Senior Member

    Messages:
    2,363
    Likes:
    5,546
    I’m glad you were able to figure this out, this is exactly what I would have recommended trying. I went the same route after discovering my local hospital lab uses ARUP, and had no issues getting them to do these tests.

    If you haven’t already gone, I recommend printing out both of the forms Hip linked below and giving them to the doctor and the lab with the blood draw requisition. You definitely need to get both. Your ID doctor is wrong, the Quest complement fixation test is not accurate. I have had both the Quest and ARUP tests, I was totally negative for echovirus on the Quest test, and highly positive three different times on the ARUP test. Not only that but one time I was given the Quest test for coxsackie B and it came back positive for a serotype that the ARUP test later proved I had never been exposed to. So the Quest test will miss chronic infections, and when it does get a positive, it often cross reacts and returns the wrong serotype.
     
    AlwaysTired and Hip like this.
  16. mariovitali

    mariovitali Senior Member

    Messages:
    1,053
    Likes:
    1,052
    @Hip @JaimeS

    Since no one mentioned it, Coxsackie B virus has (surprise-surprise) Liver involvement :


    I will add it to the List of "Liver stressors" which can be found on my signature.
     
    Last edited: May 24, 2018
  17. Hip

    Hip Senior Member

    Messages:
    11,159
    Likes:
    18,758
    I would not have thought that enterovirus (coxsackievirus B and echovirus) will be able to create chronic infections of the liver, because chronic non-cytolytic enterovirus infections only really form in non-dividing (quiescent) cells.

    It requires non-dividing cells for enterovirus infection to convert from the lytic to non-cytolytic form.

    Liver cells are rapidly-dividing cells (which is how the liver is able to regenerate so easily after toxic damage). So these cells cannot be host to non-cytolytic infection, as far as I am aware.

    I guess a non-cytolytic infection could exist in the endothelial cells of the blood vessels of the liver though.
     
  18. mariovitali

    mariovitali Senior Member

    Messages:
    1,053
    Likes:
    1,052
    Sorry, I do not quite understand what you are suggesting @Hip. Does the above mean that an infection still exists?

    The hypothesis i've been discussing is that a "liver stressor" disrupts even further a non-optimal Liver function. The Liver stressor may be something chronic (ie Chronic Hepatitis) but also an event such as DILI (Drug-Induced Liver Injury) or EBV that is non-Chronic but affects even briefly Liver function.

    From the latest Research i read, my understanding is that there is no virus lurking to our bodies.

    Is this assumption correct?
     
  19. Hip

    Hip Senior Member

    Messages:
    11,159
    Likes:
    18,758
    It's hard to explain unless you have some knowledge of non-cytolytic viral infections (also called defective virus infections). Non-cytolytic infections do not produce any new viral particles. These are the infections that some researchers think underpin ME/CFS.



    No, that is not actually correct. Numerous studies have found chronic enterovirus infection in the muscle tissues, stomach tissues and brain tissues of ME/CFS patients. This virus is not much found in the blood, but when you take tissue biopsies, that's when you find it.

    It's quite possible that this enterovirus infection is the singular cause of ME/CFS.
     
  20. mariovitali

    mariovitali Senior Member

    Messages:
    1,053
    Likes:
    1,052
    Thank you for your clarifications,just for the record i totally disagree on your last statement as Enterovirus being the "singular cause" of ME/CFS
     

See more popular forum discussions.

Share This Page