Anyone with any advice, experience, thoughts, any comments at all are greatly appreciated. Lupus? Cancer? EBV?
29 year old female in bed since the end of September and still undiagnosed. My symptoms include weight loss 8-15 lbs. (weight 103 lbs). I have been having GI problems for 4 years (& many other symptoms) off and on and not able to eat very many foods these days, no blood, but frequent diarrhea and food intolerances.I have seen a GI doctor who does not believe that I need scoping. I also have low blood pressure and tachycardia, which I won't go into much here, as well as numbness and tingling in my legs, arms and head. Headaches, as well and a host of other symptoms. This is what they have found so far: a solitary 3.4cm echogenic focus (liver) is noted in left lobe with appearances most likely representing a cavernous hemangioma. This "hemangioma" was not there last year when I had an abdominal ultrasound performed.
Blood work: • Hemoglobin: High 153 % reference range (115-150)
• Neutrophils: High 82.5 % (40.0-70.0)
• Lymphocytes: Low 12.2 % (15.0 -45.0)
• ABS. Neutrophils High 7.40 % (2.00-7.00)
• Bilirubin fluctuates between 24 - 33 High (0.0 -21.0). All other liver tests normal.
• Positive ANA test 1:160 w/ homogeneous & speckled patterns
• Reactive EBV & CMV (Mono test is neg.)
•Everything else is normal and most of the doctors that I've seen don't seem concerned with much aside form the ANA. I have noticed over the last week that I have 3-5 small painful lymph nodes in my groin and I'm having a hard time getting my mind off of the ultrasound in relation to that. I have an abdominal CT scheduled for December 9th, but am still worried. I am so fatigued I can't really do much at all. Thank you so much for taking the time to consider this post. I really need to get a diagnosis!
Obviously I can't say anything for sure, but a lot of your symptoms do correlate with EBV. For example, GI problems (although 4 years is a long time for that), blood pressure, tachycardia, numbness/tingling, and headaches have all been brought up by "chronic" EBV sufferers in this forum. Also, the lymph nodes and extreme fatigue are both typical symptoms of EBV. So I don't want to minimize the other things (And keep in mind I'm not a doctor!), but I'm hoping you'll understand that a lot of your symptoms are not out of line when considering EBV. For some reason, some people have a much more difficult time with the virus than other people do. I think it's good that you're getting the other testing done; hopefully that will give you some answers. Please don't hesitate to talk/ask anything else! God bless!
Thank you so much for this post. I am going to pursue things, of course, need to know because I'm suffering quite a lot. Your post is very kind and has helped put my mind at ease a little bit, thank you so much. Do you know what it means when you test positive for EBV, but you do not have a current mono infection? I guess it could mean a lot of things, but I've been sitting on this for two weeks without any answer about it from any doctor (how frustrating). Do you have EBV or have you had it? Do you know if you can test positive on an ANA test because of an EBV "reactivation"? I don't even know what that means (haha). This is what's worrying me. I am concerned, now that my more in-depth testing regarding autoimmune disease antibodies have come back negative (Lupus, Sjrogrens, etc), that the ANA could mean the big bad C word, especially because of the groin lymph nodes. If this is just EBV, wow! This is one monster virus! How long can this go on for? Is there no treatment at all?
A monospot test will only be positive during the acute (initial sickness) phase. The EBV titer test, on the other hand, will become positive at the same time, but will remain positive the rest of your life. However, it gets a little tricky; the best way to describe it is that the + EBV titers will transition from: initial ---> current ---> previous infection. So anyone who has or has had mono should test + for EBV titers in at least one of those phases. This is because once you have contracted the virus, it stays in your body for life, so your blood contains antibodies for it. So to answer your question, yes: I had EBV (active and re-active), and I do still have it (dormant). I don't know enough about the ANA test to say whether or not EBV could affect it. But, as you said, EBV can be a monster virus. In my case, it took a good 2 years to really get "over" it, but it's different for everyone. Some people in this forum have had chronic EBV where they just have to learn to live with it. Obviously I hope that's not the case for you, but you asked, so I'm telling! And aside from really trying to rest, there is no treatment for it; rest and try to take in healthy foods/vitamins if you can.
My EBV tests interpretation says: Compatible with EBV infection, possibly reactivation or past infection. My VCA IgG, EA IgG and EBNA IgG were all reactive. Do you know if this is normal with reactivation? Are there any other tests for EBV that I should be doing? Maybe viral load tests? I have been sick off and on for 4 years every fall/winter and now I'm wondering if it could be because of an EBV reactivation.I am so ill at points that it really does feel like it could be terminal at times. I can't imagine why there is no treatment for EBV. There are plenty of treatments for other viruses, sheesh. Hope you are doing well yourself and thank you for answering my questions. I have a doctors appointment tomorrow, where I hope to ask him more questions about this. No one has explained anything to me about this yet.
Those test results sound compatible with a reactivation. Unfortunately, there are no other tests for EBV; even if there were though, I don't think they would help any more than what you've already gotten. It could be possible that you have some outside factors (other viruses, stress, etc.) that are causing your EBV to reactivate; I know chronic EBV is very frustrating, especially when you're trying to find ways to defeat it, but if you can figure out how/why things are happening, it's much easier to deal with. I don't know anything about the viral load test, but maybe it would be worth a try. Hope things start going better for you!
Thanks! The specialist (GI/Internist) told me that the tests mean nothing and that the EBV is not reactivated. So I guess that's where it lies. In the meantime, I am starting to feel marginally better and between you and I (and another doctor that I might get down the road), I believe you and I also believe that the EBV definitely has something to do with the "flare" that I just experienced for 3 months. Thanks a lot for taking the time to answer my questions :)
Hi, I just wanted to add that the numbness and tingling you have should be checked out by a neurologist. I have CFS and EBV (active) and when I was tested by the neurologist, I found out I have peripheral neuropathy. Now, my ANA was also slighted elevated and no one knows why, I have no other autoimmune diseases supposedly. I do have Fibro though. Peripheral neuropathy can be caused by the EBV though and I am sure that is how I got mine. It causes several illnesses (that you may or may not get), so I would get that checked out. Hope that will help some. It's very hard with these illnesses. The doctors just aren't that sure about them.
Well, please remember I'm not a doctor! But what you've described is consistent with an EBV re-activation. If you can find an infectious disease specialist, that would definitely be the first route to go; from there though, you may want to check with a neurologist, as lvfrogs said. I don't know of any "official" findings linking EBV to CFS and fibro, but I've come across enough information/cases just here on medhelp that I think implies a relationship. Anyway, best wishes, and let us know of any updates you get!
Well, as I think I've already stated, the GI/internalist specialist does not think EBV is the issue and my primary care provider will not order anymore tests either. I did have my CT scan and now they no longer think the nodule in my liver is a hemangioma, but they are saying "probable focal fatty infiltration" follow up with MRI. So, they still don't know exactly what's going on there. I'm doing the best that I can to be on the doctors an outright suggestion that I think EBV might be a problem, but they just won't go there. The fatty liver thing (or whatever it is) is strange because I eat practical non-fat foods, have not had any alcoholic drinks in quite a while and weigh 104 lbs. I wonder if fatty infiltration is another possible sign of EBV.
Neuropathy has passed mostly, no (or few) issues with that for weeks now. But, I do have pressure in both of my ears (this has happened in the past w/ no infection), feel like I have water in there or am on a plane.
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