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My chronically elevated EBV antibodies

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by bspg, Jul 8, 2017.

  1. bspg

    bspg Plant Queen

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    I just got another EBV panel done and my antibodies are still elevated. They aren't much different than they were two years ago when I had the first panel done.

    Screenshot_20170708-141308~01~01.png

    I didn't expect them to be this elevated two years later. Is there any insight into what they mean? Does anyone else have the same chronically elevated antibodies?
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    I had insanely high EBV titers (including IgM and EA) for 3-4 yrs after severe mono in 2012 and then they finally went down and the IgM became negative. In my case it appears that all of the viral stuff shifted into autoimmunity. Not sure if this is common or the "normal" course for certain sub-groups?
     
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  3. bspg

    bspg Plant Queen

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    @Gingergrrl did you have any treatment for them initially? Or did they just go down when the autoimmune stuff happened?
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    I took Famvir (1500 mg per day) for approx 7-8 months starting in mid 2014. I briefly tried Valcyte after Famvir but ultimately could not tolerate even 1/64th of a pill and stopped. I never felt any benefit from Famvir but in looking back after reading your question, I am now re-evaluating this. Not because the IgM titer became negative after a couple years after Famvir but b/c in 2013, I often felt fatigue and a "sickly" feeling and this totally 100% disappeared.

    My autonomic dysfunction (POTS, tachycardia/hypotension, abnormal temperature regulation and sweat response, etc) plus shortness of breath and muscle weakness all worsened and by Oct 2014, I required a wheelchair. And then by March 2015, I developed severe MCAS that nearly killed me w/anaphylaxis reactions to food. But the fatigue/sickly feeling has never returned (to the point that I barely remember it) which is why I question if I have ME/CFS.

    In early to mid 2016, I learned that I have all of the autoantibodies and that the IgM EBV titer was finally negative. The IgG EBV titer was still positive but I was less concerned about IgG vs. IgM. So I really do not know if my body stopped trying to attack EBV after 3-4 yrs and started attacking itself and this shifted into autoimmunity, or if the autoimmunity would have occurred anyway, or if it is b/c I also had severe toxic mold exposure for 2-3 yrs, or some other reason?
     
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  5. ebethc

    ebethc Senior Member

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    can toxic mold exposure trigger AI disease? how do you know that you were exposed to toxic mold (eg, could you see it?)
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    From my own research and talking to doctors who are mold informed, it can trigger AI disease. As for the second question, we lived in a rental w/toxic black mold for approx 3 yrs. We had two failed remediations and by the end, our rental was air tested by our landlord, plus a private company that we hired, and later we hired a mold restoration company to swab test our furniture, clothing and electronics.

    All testing by all three companies showed 19 kinds of mold circulating through the a/c system including Stachybotrys (black mold) and the level of black mold was over 8.0 ppb (parts per billion) and positive was over 0.02 ppb. We were told by the testing companies, and by a mold doctor, that our belongings could not be salvaged and we lost everything we owned but kept our cars. I believe the mold was the final trigger that led to MCAS (allergic/anaphylactic reactions to all food) once my immune system could no longer fight it any more. (I am not a scientist and am explaining it as it was explained to me). Some consider mold controversial, I am really not sure why after living through it.

    Hoping this is helpful @bspg and I wanted to answer the question but not go off track!
     
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  7. bspg

    bspg Plant Queen

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    This sounds horrible @Gingergrrl! I'm sorry you had to deal with all of that. I hope the owner/landlord was held responsible!!!
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have read where if one has igg antibodies that just shows you have been exposed to the virus at some time. Small minority of drs think if the igg levels are above a certain level its a chronic infection. Also if igg antibodies increase over time, drs are more inclined to think the virus is chronic more so then just high titres. But you also have ongoing igm titres which majority of drs would say you had an active infection. Looks like you've got the lot.

    High total lymphocytes and or high or low neutrophils are seen as an active infection of some sort. High cd8 t lymphocytes are commonly seen in ebv and cmv infections.

    The average dr will tell you to take paracetamol or nurofen and you will feel better in a couple of months. That it has been going on for much longer, than you would be more likely to get a script for zoloft or prozac. If you saw a dr who regularly treats cfsme patients than they possibly would give you antivirals for a few months and see how you go.

    You should be investigated further for other immune defiencies or other possible infections.
     
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  9. bspg

    bspg Plant Queen

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    Strangely, my total lymphocyte and neutrophil counts are always right in the middle of the range. I haven't had a full lymphocyte subset panel yet (as someone ordered the wrong test), but I had my T cells checked recently. My absolute CD8 T cell count was 299 (range: 210 - 1200) and my % CD8 was 18% (range: 15% - 46%).

    I feel like those numbers are a bit low (especially with the high EBV antibodies) but I really don't know enough about the subject to say whether they're low or not. I do wonder if immune deficiency might be an issue for me but would an immune deficiency produce high antibody concentrations? It seems like it should be the opposite.

    FWIW, I will be seeing a CFS doc soon and hopefully getting some more tests. I'm just so curious about these antibodies because they've been the only abnormal finding for me so far.
     
    Last edited: Jul 9, 2017
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  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear bspg,
    All your tests look normal to me. EBV antibody levels rise after infection (the reference ranges are for people who have not yet had infection) to a variable extent and last for a variable period. You have immunity to EBV; that is all one can say. Blood lymphocyte levels also vary a lot and yours are normal.
     
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  11. TenuousGrip

    TenuousGrip Senior Member

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    I asked Stanford if they saw EBV (and other similar infection antibody) levels drop as patients started to feel better. They said they did not.

    In fact, as part of a system-wide cost-cutting effort, Montoya's clinic said they were willing to decrease the frequency with which they ran this sort of blood work on their patients since it didn't really tell them anything useful over the course of the treatment protocol.

    Which all sounds a bit weird, but ....
     
  12. Learner1

    Learner1 Professional Patient

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    This point kept me from getting care sooner. I had over 10 doctors dismiss my IgG antibodies, saying "all that shows is that you had them in the past." When I finally saw a top CFS specialist, he said "...that's what we were taught in med school, but when they're high, like yours, you have a chronic, recurrent infection."

    Interestingly, though I knew about 4 other infections, my EBV infection was difficult to find. All prior EBV tests had been negative before I finally had very high VCA and PCR tests, so your doc was wise to run the full panel of EBV tests.

    This, too can be misleading. I learned I have a seriously underactive immune system that's not reacting to my infections, so my lymphs, neutrophils, and CD8s are always normal, even with active CMV, EBV, and HHV6.

    Once my doctors finally figured out I had EBV, I was put on a high dose of valganciclovir and LDN and expect to be on them for many months, with liver monitoring. I'm also in the process of getting IVIG approved.

    This is important. Even though we knew I had infections and was doing a lot for them, my body wasn't responding as the load of infections I have is huge and my immune system was too weak to fight, even with lots of support.

    Getting all the immunoglobulins tested along with subclasses is important, along with CDs, NKs, etc.

    So, I wasted about a year not knowing the full scope of the problem I was tackling. I was staying functioning at a higher level than I would have otherwise, but the infections weren't going away.

    And different infections may require different treatments.

    The other thing that was helpful was being tested for adrenergic and muscarinic autoantibodies. Apparently, infections can keep stressing our systems and causing an autoimmune response. We'll watch them as I go through treatment and they may dictate the need for further treatment, like Rituximab.
     
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  13. ljimbo423

    ljimbo423 Senior Member

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    Hi bspg-

    Dr. Robert Naviaux, a cfs/me researcher who just recently put out a paper on cfs/me metabolomics, but also has a deep understanding of virology says this about viral reactivation and testing-

    *Underlining and bolding mine

    https://www.omf.ngo/2016/09/09/upda...-fatigue-syndrome-q-a-with-robert-naviaux-md/
     
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  14. Tammy

    Tammy Senior Member

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    Don't let the whole EBV testing issue trip you up. When I first got sick........my Dr. (immunologist) said my EBV titers were through the roof and that was the culprit behind my CFS. Later on down the road............tests showed only a PAST infection. My Dr's (immunologist not included) convinced me that the EBV was no longer an issue..............YET I was still horribly ill. Because the tests showed only past infection............Dr's will dismiss that this virus is causing any damage. I think this is a HUGE mistake. This virus can get deep into organs and CNS.

    I am finally getting better after realizing that EBV is in fact the culprit behind my CFS and using herbal anti-virals and other supps. to fight it. Hasn't been easy...........but I am slowly getting back to feeling better after 20 yrs of HELL.

    All I am saying is keep a door open to the possibility that EBV may in fact be playing a big factor.
     
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  15. ljimbo423

    ljimbo423 Senior Member

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    Hi @Tammy - Congrats on your improvement! It feels good to feel good! I think immune system dysfunction is a major cause of symptoms. Dr. Naviaux mentions immune system dysfunction above.

    Is it not possible that the herbs and supplements that you are taking, are helping to modulate an immune system imbalance, not related to EBV and therefore improving your health?
     
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  16. BFitz89

    BFitz89

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    Would you mind stating which herbal antivirals you're using?

    My CFS hit a couple months following mono so I think it's worth a shot trying herbal antivirals.
     
  17. Wonkmonk

    Wonkmonk Senior Member

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    Dr Lerner states that the absence of positive PCR DNA tests is because in CFS/ME there is nonlytic, nonpermissive replication that produces only early gene products. Therefore PCR and often IgM is negativ, but EBV-EA is positive. The virus doesn't replicate completely, instead it produces early gene products.

    If those infect cells, they don't lead to more virus replication and cell necrosis, instead they lead to cell apoptosis, i.e. self-destruction. According to that theory, prolonged symptoms of CFS/ME are the result of herpes virus non-lytic replication and the inability of the body to fight the virus back into latency.

    That would be a possible explanation for the observations of Dr. Naviaux.
     
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  18. ljimbo423

    ljimbo423 Senior Member

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    Hello Wonkmonk- This is from the CDC website regarding EBV-EA -

    LINK

    *bolding and underlining mine

    Dr. Navaiux addressed this above saying-
    Jim
     
  19. Wonkmonk

    Wonkmonk Senior Member

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    Thanks Jim, for pointing this out.

    Sorry, I didn't mention before, Dr Lerner refers to elevated EBV-EA antibodies, so as I take it there is no contradiction with the CDC. There may be some EA antibodies in healthy people, but if they are elevated (don't remember Dr Lerner's threshold sadly) and PCR tests detect no viral DNA and there is CFS-like disease, it could be a smoking gun.

    As I understand the CDC, 20% of healthy people continue to have detectable EA antibodies, but they may not necessarily elevated.

    It would also be interesting how many of these 20% "healthy patients" have some degree of CFS-like illness (we will never know of course). According to my doctors, I'm perfectly healthy *sigh*
     
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  20. Learner1

    Learner1 Professional Patient

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    I just went over all my infections with my doctor, none of which were IgM. Lots of high IgG, some PCR, etc.

    I have labs tracking all of them going back over 2 years, understand the concerns Drs. Naviaux and Davis have, and have read everything I can on it, so I've had questions about whether I actually have the infections, and concerns about damaging my mitochondria.

    My very experienced CFS doctor says I definitely have them and the bigger risk to my mitochondria is not treating them. The other issue he identified was my dysfunctional immune system which was not properly able to mount a response to register on some of the tests.

    So, I guess I have them after all... (This is after a dozen MDs dismissed the IgG results as "past" infections.)
     
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