CMV And EBV virus

My son is 13 years old. A year ago,he started having low iron without any symtoms (symptoms). Was treated with iron supplements. Then 6 months ago he started feeling tired, weak, headaches and we went for some blood work. Results wereEBV VCA igG 3.18 and CMV igM AB, EIA 1.78 and EBV VCA IgM 0.03. His doctor said he has both the CMV-Cytomegalovirus and EBV virus. From February, he wasn't able to attend school. Some days he went for 2-3 hours but mostly felt tired and stomach and head hurt him and just plain not well. End of June retook blood work-still wasn't feeling much better- in fact started to complain of not being able to concentrate. Like his brain was fuzzy! His result came back with CMV IgM AB, EIA 1.50-still high and his IgG 0.09. Can someone help me out there. The doctor said it could take 1-2 years until he feels better. He can't go to a camp because he can't keep up with any structured program. He keeps asking me, his mom to help him feel better. He was always a great student and a low maintenance child. Happy, self confident and never ill. He feel disappointed that he is not getting better. I tried all kinds of vitamins and alternative medicine, nothing is making him feel better. Should he just sleep and rest or should I push him to do activities? PLEASE HELP-does anything work? Does he need to go to a specialist?He is by the primary doctor who is a very good doctor. Also his Lymphocytes% has been going down from 47.3 in January until 43.4 in June. Any connection?  

[hpylilbukaroo]

I actually got it my first year of high school. I missed a lot of school because of it too. Don't push him, that would just make him feel worse when he can't keep up as it is. In home teacher might be better until he gets better. Might be able to keep up with classes better and at least feel better about himself in that way. Time is the only cure I'm aware of. I still show that I have an active case in my titers and its been over 15 years. I've experienced that fuzziness as well, try thinking of it like you live every moment of the day at 4 am without sleep. Its hard, more so for a kid. Good luck.

[hpylilbukaroo]

I actually got it my first year of high school. I missed a lot of school because of it too. Don't push him, that would just make him feel worse when he can't keep up as it is. In home teacher might be better until he gets better. Might be able to keep up with classes better and at least feel better about himself in that way. Time is the only cure I'm aware of. I still show that I have an active case in my titers and its been over 15 years. I've experienced that fuzziness as well, try thinking of it like you live every moment of the day at 4 am without sleep. Its hard, more so for a kid. Good luck.

[Ima10]

Thank you for your response. It was important that you wrote that your titers are still high, so I know what to expect. I guess time will be his only cure. Was there any vitamin or alternative medicine that gave you more energy or helped you at all?

[lvfrogs]

I agree with the above response. He probably will have to be home schooled until he starts feeling well enough to attend school all day. I wish I could tell you there is a majic cure or supplement, but if there is one, I haven't found it yet. I still have high titers and it's been about 6 years for me. The main advice I would give you, which I am sure you are doing, is be supportive. I wake up most days and all I want to do is go back to bed and not get up. It would be easy to look at a teenage boy as "faking that" but obviously, he wouldn't be. and remain vigilant about the rest of his health as I believe that EBV has caused a host of issues in my health.  I am sorry that both of you are going through this. Very hard for me to understand, can't imagine my son understanding. I wish you all the best.

[Ima10]

Today, I took him to some homeopathic person who happens to have a nursing degree. She did some tests on him and she told me that she feels he has a old strep virus in his body(maybe 3 years) and his thyroid is a little sluggish. She said his number is 15. Only at 50 does a doctor treat this and a blood test would not show it up. Anyway, she suggested to use some natural homeopathic things-she doesn't sell this or make any money from this suggestion- and once these two issues are cleared, she feels the CMV and EBV virus will start leaving his body. I am not sure what to make of this info. Yes, it is true that he had a couple of years high ASL titers that the doctor treated with antibiotics(a couple of rounds), and his leg muscles hurt. 2 years later everything came together and he was finally tested for the viruses and they were all active in his system. I'm thinking if I should go ahead and let him take this stuff or is this a bunch of nonsense. Did anyone have this experience or does anyone think this makes sense? Could this stuff do more harm than good? Any help would be very much appreciated. He keeps telling me I don not believe him because I am not helping him. I definitely believe him-and I do not know how to help him. He is FRUSTRATED! I just keep telling him , to relax and in time he will be completely well. Thanks for everyones help!

[9DodgeFan]

Hello, sorry to hear about what you (and your son) are going through!  Here's the way I see the natural/homeopathic stuff:  there are people who will say it works but honestly, if it did work, doctors would be advocating/supporting (more than just a few here/there).  Personally, I wouldn't put my money into that sort of thing; however, there's no harm in trying, so it's really up to you.  I can tell you this though:  Making sure he eats as healthy as possible (and consider taking vitamins, as well) will only help in the long run, and may help in the short-term as well.  Other than that, as lvfrogs said, there unfortunately is no cure for either EBV or CMV, other than lots and lots of rest.  And that's just when facing even 1 of those 2 viruses, so it's no surprise what a tough time your son is having dealing with both.  To put things into perspective, I was a healthy 23-year old male when I got mono; it took me well over a year until I felt I was over the sickness (then after that I was so out-of-shape it wasn't funny!).  Honestly, I still don't feel like I'm where I was stamina-wise before I got sick; unfortunately that's just what happens with some people.  I do feel very bad for your son for having to deal with both viruses at the same time, but I agree with the doctor that it could take 1-2 years to get over.  I hope this has helped, and I wish you both the best in dealing with this!

[lvfrogs]

Just wanted to jump in and say that I agree with 9DodgeFan.  I take vitamins and supplements but honestly, haven't even seen that much help from them. Rest is the best medicine and mild exercise for me. It's very hard for someone his age to understand and I am so sorry he (and you) are going through it. Let us know how he does and hopefully, he will get better. I am more than happy to email with him if you think that would help. You can send me a private message if he would like to do that. It's very hard and even at my age, I don't think that many people understand, so do your best to be patient and look up as much info as you can for him. Take care!

[Ima10]

Thanks to all for all the support. It definitely is making this whole business so much easier for us. My son is comforted when he reads all these comments and feels like there are people out there who understand what he is going through. I will give some vitamins and herbs a 1-2 month trial, and see if anything helps. At this point his stomach bothers him, so I am taking it easy on adding extra stress to his system. He is relaxing and reading and we're hoping he will start feeling better. His head hurts a lot now, it's kind of everything hurts. We'll keep you posted how he progresses. I am trying at this point in his virus( 8-9 months into it) to help him the most with his brain fuzz! That seems to bother him the most! Does anyone think that giving him omega 3 concentrate can do any harm? There are some good write-ups as how this vitamin can help with concentration.Any thoughts about this?

[lvfrogs]

I wish I could give you some hints on the brain fuzz. I need them myself. It's terrible. I hope someone else answers your post about Omega 3. I don't think it could hurt him but with him being younger, I would check with a doctor first. I have had no luck with supplements to be honest. I keep trying but no luck. I hope you get some responses. Good luck!

[Ima10]

Well, here we are in January of 2012 and my son has some interesting things happening with his CMV virus. He started feeling somewhat better for a couple of weeks. Basically, he would have a good week with one day of feeling sick. The doctor redid his blood work and he notices something strange. His CMV IGM started going down-1.25 and his IGG showed 0. He figured there must be a mistake in the blood work, since as soon as a person gets the virus his IGG will always show a high number. He did the blood work again 3 weeks later and I got the results yesterday. Now the doctor is concerned. His IGM level rose to 1.67 and his IGG is still at 0. He said that there is something that is not letting my son fight the infection. If I understand correctly, he has no anti bodies fighting this. He started about a month ago feeling awful again, with no good days. He wants me to go on to a specialist for this problem. He isn't sure where though! Does anyone out there understand what this might be or how we can get him better. Why would his IGG not show anything? He really needs to start feeling better. He is all but 13 1/2 and he feels like no one can help him. His frustration level is growing. Thank you for any help in this situation.

[9DodgeFan]

Wow, sorry to hear that!  That does seem VERY strange for the IGG to come up at 0, especially given that it's from multiple tests.  You definitely need to find an Infectious Disease Specialist to look at your son; maybe they've seen something like this before.  Even if not, chances are they'll be much better equipped to help your son in dealing with his sickness (although it sounds like your doctor actually knows what he's talking about, at least more than most).  The only other thing I would suggest trying is getting the same test from another lab/hospital, just in case there's something wrong with their equipment.  But I think that's kind of a long shot.  Wishing you the best, and please keep us updated with what you find out!

[Ima10]

He went to see an immunologist last week and he is running more sophisticated blood work. I don't have the results yet, it will take 2 weeks. I'll keep you posted. Thanks and if that doesn't help us, I will try an infectious disease specialist. Thanks for the advice.

[9DodgeFan]

Glad to hear they're running more tests, but I would still try to get in with an IDS as soon as possible; I wouldn't even wait for the lab results.  Show him/her what the results have been so far, and then when the new results come in, those can be added to the mix.  Obviously, the sooner someone can get this figured out, the better, which is why, if it was me, I would be trying to get in with the IDS right away.  Best wishes!