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For Those on IVIG. Can you Keep using Antibody EBV tests to monitor progress? Or is it skewed ?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by SunMoonsStars, Nov 4, 2016.

  1. SunMoonsStars

    SunMoonsStars

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    For Those on IVIG. Can you Keep using Antibody EBV tests to monitor progress of EBV Levels over time while on IVIG? Or is it skewed ?
     
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear SunMoonStars,
    EBV antibody tests tell you nothing about EBV levels. The antibody test is a test of your immunity to the virus, not the presence of virus. Immunity is a good thing.
     
    Kati, hixxy, zzz and 1 other person like this.
  3. frederic83

    frederic83 Senior Member

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    Your purpose is to treat EBV with IVIG ? Or is it a treatment for something else ?
     
  4. Oberon

    Oberon Senior Member

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  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    As I understand it it can point towards recent infection if you are suspecting that an acute illness is primary infectious mononucleosis. But in a longer term situation with repeated assays I have not heard of it being an indicator of active replication. I don't think it has any value there. The website from Mayo I think just relates to diagnosing an acute illness as recent mono. There have been papers suggesting that even in this situation early antigen is pretty unreliable because some people go on making antibody to it for long periods so a recent illness may not have been their primary mono after all.
     
    edawg81 likes this.
  6. edawg81

    edawg81 Senior Member

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    @Jonathan Edwards, just a follow up question, What are your thoughts about EA that was initially negative on a test that turns positive within a week on a separate followup test? This is what happened to me just after a recent episode onset.
     
  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think a change from negative to positive on EA would only be relevant at the time of typical symptoms of glandular fever and no history of having had it before. If the standard EBV antibody test has been positive before then I doubt the EA means much. Antibody titres to all sorts of viruses can go up nonspecifically after any infection (due to something else) as part of what is called an anamnestic response.
     
    edawg81 likes this.
  8. SunMoonsStars

    SunMoonsStars

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    I disagree with some of the comments here on Titer tests. It may not give you the "load" amount but it sure tells you if your actively fighting or not. IGM positive and EA positive has been stuck this way for a couple years and symptoms to match.! I was diagnosed with Glandular EBV and also Neurological manifestation that is not common of Meningoencephalitis. I was put on IVIG which is working to suppress symptoms and will be testing again soon for titers to see how those tests go. All of my doctors agree to this test. My Neurologist, Hematologist, Immunologist, Microbiologist, Oncologist, Gynecologist, Functional MD for example. That is a long list so I think that agreement is huge. Also the treatment for my condition was agreed upon collaboratively.

    Yes it means your immunity is fighting which is good. But also it should calm down once the virus is suppressed. So that test is a great test and using all 4 titers shows where you are at. IGM will come down first and then EA and the VCA IGG and NA IGG we know will stay high forever. But those also reduce is total over time even if they do not get close to normal.
    Hope everyone is well.

    PS I had to switch to IVIG after growing tolerant to cimetidine which had the symptoms controlled too. It am diagnosed with immune deficiency now and am prescribed IVIG for life to control this virus and also to help all my chronic infections I have rotated over the years disabling me.
     
  9. josephine2

    josephine2

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    Um - jumping on this thread since I am on gammaglob IVIG. SOmething felt wrong this last time because I developed daily migraines since. RX unchanged. I tried to stay hydrated and once in awhile I'll get a headache the next day but this time was different. So doc says maybe aseptic meningitis since I a getting migraine daily now for six days following the last IVIG. Not sure if it is entirely due to IV since I was on amox at the time and the EBV symptoms were already kicked up due to sleep probs associated with tapering off Lunesta. http://emedicine.medscape.com/article/1169489-overview

    Unfortunately, Imitrex should not be used more than 10x a month and I will soon reach that threshold. Opiod is only other way according to doc. Anyone else get this? I can get saline added to next infusion and slow it down but if that doesn't work I have to try subcu. or stop altogether.
    BTW - my EBV titers always high on IVIG
    thnx
     
    Ruthie24 likes this.
  10. Gingergrrl

    Gingergrrl Senior Member

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    I do not get migraines but got severe headache after first IVIG (last July) and ended up in the ER.

    The ways to avoid this (even without taking a steroid as a post-IVIG headache preventative) are:

    1) Doing slowest infusion speed possible (mine is 7-8 hrs)

    2) Drinking lots of water the day before and day of IVIG

    3) Doing infusion in a split dose over several days (mine takes three days)

    4) Taking other pre-meds (for me Atarax, Tylenol & Pepcid) but for most its Benadryl, I just don't tolerate Benadryl well.

    Hope this helps!
     
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  11. josephine2

    josephine2

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    Yeah - I knew about the water day of - now day before good. For the future, doc thinking of Rxing saline first and then infusion. I'll ask for longer - like double it to 7 hours. Atarax looks promising since not a benzo.

    RIght now I'm in crisis of dealing with morning migraine which only dissipates with Imitrex. I'm afraid of circulatory probs from longterm use but nothing else works. Doc recommending Fiorcet or similar opiod (asking for one without caffeine) -- I am very depressed about using opiods since w/d is a drag even at low doses.

    Is there a reassurance thread for oldtimers like me? Jo
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    Do you have MCAS and have you ever had "third spacing" of fluid? I had flash pulmonary edema (just once but that was enough) from one liter of IV saline in 2014 that was infused over three hours. My MCAS doc said the minimum for a liter of saline for me is 8-10 hours. When I do IVIG, it is approx the size of a quarter of a liter bag (each day) so in total it is about 3/4 of a liter by the end. Each day the infusion is seven hours long b/c IVIG is so thick.

    If I were to do it in 3-4 hours (what it sounds like you are doing), I would not only be at risk for third spacing, but it increases the headache severity, the aseptic meningitis risk, the blood clot risk, etc. My MCAS doc told the infusion center that 40 ml/hr is my absolute maximum speed (and there are people who do 300 ml/hr). He told me NOT to do saline b/c this just adds even more fluid that I would have to absorb. But if you do not have MCAS and not at risk, you might be fine with adding saline.

    How many grams of IVIG are you doing in one sitting? The other thing to try besides lowering the infusion speed, is a split-dose. I do 27.3 grams per day which totals 82 grams by the end of the 3-day split dose. All of these things allow me to tolerate it and the only extra fluid is the D-5 dextrose used for the last 20 min to flush the remaining IVIG out of the line (so it is not wasted). The brand that I use is not supposed to be mixed w/saline b/c it can clump up and crystalize inside the line but other brands are okay w/saline (and I am not allergic to dextrose so not an issue for me).

    Atarax is a first generation anti-histamine like Benadryl but for whatever reason, for me, it has no side effects except making me very tired. Whereas Benadryl gave me respiratory depression and all kinds of horrible side effects, Atarax does not. I used to take it as a rescue med for MCAS but I no longer need it for this and only take it as a pre-med for IVIG. Do you take Tylenol or any pain killer as a pre-med? The other option is taking a VERY small dose of a steroid like Decadron as a pre or post-med headache preventative. I did not do well with Decadron but now have a compounded prescription for 0.5 mg if I need it at next cycle of IVIG but my choice if I take it or not.
     
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  13. boohealth

    boohealth Senior Member

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    Not sure if this will help or not but oxygen is used for refractory cluster headaches--it might help break your migraine. It's simple--just have doc Rx medical oxygen at home. Low flow, I don't recall the specific protocol, but it's widely known and covered by insurance if for the above dx.

    To minimize IVIG reactions:
    1) Use Gamunex--which is in glycine, the most physiologially tolerable, and not formulations in dextrose or with saline.
    2) Hydrate with dextrose or isotonic saline IV ahead of time (latter preferable unless salt sensitive)
    3) Drip ultra slow--so slow the bored nurses will be annoyed.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    @boohealth I use Gamunex b/c my MCAS doc felt this would be the one that I would tolerate the best and he was correct as usual! I did not know it was considered the most physiologically tolerable and thank you for that info.

    Also to @josephine2 There are several IVIG groups on FB that are very helpful and I can send you the info via PM if you are interested.
     
  15. josephine2

    josephine2

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    Thank you@boohealth and @Gingergrrl -- I am on one FB page but would like to find more.

    Is MCAS - macrophage chemotactic activity - sorry new here

    I use Baxter - Gammagard which is stabilized in glycine -- I can't find the order right now but I have not ever had a problem with IVIG until this last one. It may be because my sxs are all very kicked up with sore throat, glands, etc. too. These have been for 6 weeks - amox didn't work and low dose acycolvir wasn't working but need to try longer.

    I am comforted by Imitrex being less risky than I thought but am guessing it may not be the best drug for this kind of reaction headache. http://www.nyheadache.com/blog/daily-use-of-triptans/ Jo
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    Sorry for all the acronyms! It is "Mast cell activation syndrome".

    It is possible you might do better with Gamunex although I cannot say for sure. My doc said that Gamunex is actually cheaper for the insurance companies than Gammagard (not sure why) so they might approve the switch. But please ask your doctor first.

    I was told when I had the ten day very severe headache to first dose of IVIG, that only a steroid like Decadron would reduce the pressure at that point. It was not a migraine though and was not aseptic meningitis but the pain was unbearable. I still get the IVIG headache but never as bad as that first one. My first infusion was done in three hours against doctors orders but after that they were all done in seven hours and the infusion center now fully knows that I am not capable of increasing the speed (as much as they may want to)!

    Are you doing low dose or high dose IVIG? How many grams per infusion?
     
  17. josephine2

    josephine2

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    It must be high at only 3.5 hours - but I can't find RX last order - you'd think I'd remember - 10 grams?. I have a home nurse. There us also some sodium chorlide.

    I get the migraine in the middle of the night or am (hurts to even lift my head) and it diminishes with 20mg Imitrex nasal- if it continues beyond 10 days I'll will try opiod first since its the devil I know. Steroids I haven't used in over 20 years so. My physiology has changed alot since tapering off Lunesta so all meds are dicy and it may be this causing the reaction to the IVIG. My doc is Levine in NYC and, I'll ask if she has done bloods for MCAS . Jo
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    If your entire dose is only 10 grams and you don't have MCAS, then 3.5 is probably okay. But in general, slowing down the infusion speed reduces the headaches.

    I take a low dose of an opiate for several reasons (when needed) and it is very helpful for the IVIG headache. I did not do well at all with the steroid and I plan to avoid it unless absolutely necessary.

    Do you have allergic reactions or anaphylaxis to foods, food additives/dyes, strong smells, etc? Do you get angiodema or third spacing? I think you would probably know if you had it but it cannot hurt to ask.
     
  19. boohealth

    boohealth Senior Member

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    @josephine2 I really think you should ask Levine about the medical oxygen. Better to treat the swelling causing the headaches than the symptoms with heavy duty drugs like opioids. She ought to know about this for cluster headaches.,.its simple to do and rx.
     
    Ruthie24 likes this.
  20. boohealth

    boohealth Senior Member

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    @SunMoonsStars I was told a long time ago I couldn't get correct readings and interpretation of immune activity without going off ivig for several months. I don't know if that was accurate but I do know from the scientific literature that the passive antibodies (which are pooled from thousands of donors btw so will be fairly representative of a wide range of antibodies) last at least 3 weeks. Obviously those antibodies will skew any interpretation. Including for EBV.
     

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