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Chronic Epstein Barr Virus - recurring positive IgM (I am not the patient)

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
As well as Valtrex, a more experimental option for treating EBV-associated ME/CFS is spironolactone.

One study found spironolactone 25 mg daily resulted in 31% of EBV ME/CFS patients achieving full remission, and 69% observing improvements in their ME/CFS symptoms. See this post.
Spirinolactone has some counterproductive side effects:

https://www.singlecare.com/blog/spironolactone-side-effects/

And, in your other thread, This was one of the responses, which seems to make sense:

This is an extremely poor quality study (if it can be called that as I believe it was just a poster for a conference).

There's no control group, no blinding, subjective outcome criteria and it doesn't even specify what diagnostic criteria were used. It also doesn't specify how 'remission' was defined.

This just demonstrates that most doctors have no idea on how to run proper clinical trials.

For what it's worth, I was prescribed spironolactone in the late 90s as a friend who was a doctor was a colleague of an endocrinologist who was experimenting with it with his ME/CFS patients. It did nothing for me. (I had an EBV onset.)

ETA: a number of people in a local support group have seen the first author who is a specialist at a Qld hospital and have been put on spironolactone. I imagine they would have reported any miraculous recoveries if they had occurred. The second author is apparently consulting at a 'regenerative' clinic.
I also spoke to my very experienced doctor about it and he didn't think much about it. He puts a lot more stock in using actual antivirals.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
It can also have certain benefits, like reducing androgenic hair loss, reducing undesirable body hair, treating acne and improving complexion, reducing high blood pressure, and boosting mood.
In that case, it would be wise to check ones hormone levels before embarking in treatment that can substantially alter testosterone levels and monitor while on it.

It also would be useful to be aware of one's electrolyte and renin and aldosterone levels before and during treatment as it competitively inhibits aldosterone dependant sodium potassium exchange channels in the kidneys, which leads to increased sodium and water excretion, but more potassium retention.

For many of us, the antiviral route would be safer, particularly as The quality of research on spironolactone and viruses is poor, and it is an off label use which many doctors would hesitate to prescribe for, particularly as it has the hormonal and electrolyte effects.
 
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7
Thank you all for your replies. Trying to digest all this...Can any of you decipher the info on this lab result? Frustrated that 2 other labs I got last week weren't able to run because they arrived at the Mayo lab too late.
 

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Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Thank you all for your replies. Trying to digest all this...Can any of you decipher the info on this lab result? Frustrated that 2 other labs I got last week weren't able to run because they arrived at the Mayo lab too late.
It says your Epstein Barr Early Antigen is negative. Usually, labs report a number, not positive or negative. I don't find labs that without information and don't allow the doctor to interpret what they measure to be helpful.

I posted the paper this comes from earlier - note the sections I've highlighted with bold and italics.

"Although not always present, EA(D) IgG increases during the first 3-4 wk and is no longer detectable after 3-4 mo (approximately 85% of the patients with acute infection are positive for up to 3 mo after symptom onset)[23,24], even though in some cases they can still be detected years after a primary infection[23]. Approximately, 20%-30% of healthy subjects who have previously been infected by EBV have EA (D) IgG[2,23,25]. High titers have also been seen during reactivation[26] and in patients with nasopharyngeal carcinoma[27], who also have high titers of VCA and EA IgA[28]. EA (R) IgG levels may remain high for up to 2 years and, in cases of protracted disease, can be detected after the disappearance of EA (D) IgG[29]. EA (R) IgG has been found in children aged less than 2 years with silent infection, in patients with Burkitt’s lymphoma, and also in the previously infected subjects at low levels[28]. High levels of EA (D) and/or EA (R) IgG can also be seen in cases of reactivation and in immunocompromised patients[29]."


"The detection of antibodies is less useful in immunocompromised patients because of their immune system dysfunctions, and the fact that the type of antibody and its maintenance may vary over time depending on the dynamics of the disease, thus leading to atypical profiles[44]. There is generally an increase in the titers of VCA IgG and EA (D) or EA (R) IgG, with a decrease in the titer or loss of EBNA-1 IgG; there may also be increases in other antibody classes such as EA IgA and, although less frequently, VCA IgM. The variability observed in different patients ... indicated that a search for EBV DNA by molecular biology methods is useful for the diagnosis and follow-up of patients at risk of developing EBV-related lymphoproliferative disorders[45]."


The papers I shared explain that diagnosing EBV using antibodies is usually preferred for most patients because it allows them to figure out where the patient is in the EBV infection process, e.g. do they have a first time, acute infection? Has it been there awhile? Is the first time infection over and this is just evidence of a previous infection? Is it reactivated? By looking at the combination of EBNA, EA, and VCA IgG and IgM, they usually can figure it out. Except in the cases on the charts I posted that says it's indeterminate and more testing us needed.

BUT, this all goes out the window if someone is immunocompromised OR at risk of developing an EBV lymphoproliferative disorder, like lymphomas and leukemias. In that case, DNA (PCR) testing is recommended.

It also says that EA may not be positive at all in some patients. This is exactly what happened in my case - my PCR was positive - I had an atypical profile to to immune system dysfunction.

Furthermore, EBV may be active and may not show up on a blood test - it may be quietly simmering away in the tissues causing mischief, and only occasionally releasing anything into the blood. Only a biopsy would find it. Autopsies of ME)CFS patients who tested negative for certain viruses were found to have viruses when various tissues were tested.

Wondering why a doctor who knows that you have twice had IgM positive results over 2 years apart, a history of cancer, and a leukemia scare is piddling around as if you were some 15 year old with suspected mono. EBV does cause cancer and autoimmunity and can, in some cases, lead to death.

If I were the patient, I would be asking at least for EBV PCR tests at 4-6 week intervals over 4-6 months to trap it when it comes out of hiding. Or, better yet, asking to trial an antiviral like valacyclovir, valganciclovir, or famciclovir. And a thorough investigation of my immune function - CD4, CD8, natural killer cell function and immunoglobulins (G, A, E, M) with subclasses. And, on my own, or with the help of a functional medicine doctor look into nutrients and botanicals to support immune function, like zinc, vitamins A and C, andrographis, and colostrum.

I don't know if you're seeing the people who didn't help the first time around, but you may find them reticent to help, either because they only do oncology not viruses, or, more nefariously because they don't want to be gone after for malpractice. Finding an independent thinker her might be useful.

Best wishes ...
 
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7
@Learner1 Thank you, that is really helpful. I think I am in pretty good hands with my immunologist - my oncologist was the one who failed to follow up on 2019 IgM+ test, and the immunologist was the one who saw it when reviewing my history. He has ordered PCR test, NK test, immunoglobulins, and I'm pretty sure all the other testing you requested (I copied stuff you'd posted previously and shared with him, and he agreed to testing, thank you!) I'm just waiting on results now. And need to go back for another draw since some of the tests weren't done because they got to Mayo too late. Still not sure how much of an out-of-the-box thinker he is, but I'm going to see what happens once more lab results are back. I really do appreciate your insight!
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@Learner1 Thank you, that is really helpful. I think I am in pretty good hands with my immunologist - my oncologist was the one who failed to follow up on 2019 IgM+ test, and the immunologist was the one who saw it when reviewing my history. He has ordered PCR test, NK test, immunoglobulins, and I'm pretty sure all the other testing you requested (I copied stuff you'd posted previously and shared with him, and he agreed to testing, thank you!) I'm just waiting on results now. And need to go back for another draw since some of the tests weren't done because they got to Mayo too late. Still not sure how much of an out-of-the-box thinker he is, but I'm going to see what happens once more lab results are back. I really do appreciate your insight!
Sounds good - hope you get some answers soon and start feeling better!
 

Marylib

Senior Member
Messages
1,161
I don't think I have run across this article before. From University of Utah

Spironolactone blocks Epstein–Barr virus production by inhibiting EBV SM protein function
https://www.pnas.org/doi/full/10.1073/pnas.1523686113

Sorry for the huge font - yes you do need to keep your kidney and liver function tests going - and not gorge on potassium rich foods, etc. I like spirinolactone. I feel better when I take it. But everyone is different. I don't have specialist care - so I can't access all the testing, antivirals, etc. Only your normal lab tests.
 
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