Common symptoms related to reactivated EBV?

[soxfan]

@SOC- I had the Tilt Test done 3 years ago and passed with flying colors. I also wore a Holter Monitor for a 24 hour period. Since I did so well the doctor ruled out dysautonomia even though sometimes I really think that is part of my problem.
I was on florinef for a short period of time and that only made me feel bloated.

I am really at my wits end trying to get a doctor to figure this out....feeling like this for 10 years without some sort of explanation is ridiculous. There HAS to be something as the cause of this chronic fatigue....

Is there any other testing for dysautonomia?

I am going to google it again and print out some information about it so I can really see if that could be an issue....the doctors don't seem to think so but then again they have given me no other explanations.....

 

[SOC]

@SOC- I had the Tilt Test done 3 years ago and passed with flying colors. I also wore a Holter Monitor for a 24 hour period. Since I did so well the doctor ruled out dysautonomia even though sometimes I really think that is part of my problem.
I was on florinef for a short period of time and that only made me feel bloated.

I am really at my wits end trying to get a doctor to figure this out....feeling like this for 10 years without some sort of explanation is ridiculous. There HAS to be something as the cause of this chronic fatigue....

Is there any other testing for dysautonomia?

I am going to google it again and print out some information about it so I can really see if that could be an issue....the doctors don't seem to think so but then again they have given me no other explanations.....

Of course, your doctor might have given you a perfectly accurate diagnosis (or non-diagnosis in this case), but sometimes doctors only do the simplest tests and miss the less well known or subtler forms of dysautonomia. Doing some reading is a good idea. If you haven't seen this article at PR about treating orthostatic intolerance, it might be a good place to start. You can try the Simple Test for Orthostatic Intolerance linked in that article.

If you think you might have some form of dysautonomia, you should go to a doctor who actually knows something about it, which most GPs and many cardiologists don't. There is a Physician's List at the Dysautonomia Information Network. There are 4 or 5 doctors on that list in Boston.

Oops! I just realized you're not in Boston, but in NC. Dr Laura Black, Dr Lapp's colleague at the Hunter-Hopkins Clinic in Charlotte is listed in the DINET Physician's List. I've seen both Dr Lapp and Dr Black and consider them kind and excellent doctors. While they wouldn't be my choice if I was considering AVs or abx, I think they are very good with other ME/CFS symptoms. They might be a perfect match for you since they know about both ME/CFS and dysautonomia.

 

[Gingergrrl]

@Gingergrrl43- I do believe the EBV is NOT active in me. There is zero indication that it was reactivated from all the testing I have had.

I know I must have some type of active infection which could be Lyme in order to make me so tried all the time. I have fatigue all day but work through it the best I can. Some times I crash where I am in bed completely but I am also always always wired and tired any time I try to rest...its impossible.

I wanted to add that my son had mono in 2003 and was so sick he had to come home from college to recover. That could be when I was exposed but I never actually had symptoms....

@soxfan, I agree, it doesn't sound like active EBV and if the testing did not show it, I would continue to pursue other avenues. Can you see a Lyme specialist to confirm or re-confirm if you have chronic or re-activated Lyme (I do not know too much about this issue but maybe post in the Lyme sub-forum on the board for advice.)

Also, if you had caught mono from your son as an adult you would know it and would be incredibly sick. I got severe mono at age 41 and it was the sickest I have ever been in my life.

Also, curious re: what @SOC posted below, have you been tested for autonomic issues? ETA: just saw that she gave you some info on that so it sounds like you have some possible leads.

 

[soxfan]

@ SOC- Thank you for the information. I am going up to NH to see my Lyme doctor in a few weeks and will discuss this with him. He is knowledgeable in CFS but it is not his primary practice. I have long wondered if my fatigue is the result of some type of autonomic dysfunction because I just can't fathom what else could be causing it. Especially where I don't have all that many symptoms otherwise.

It is mostly the fatigue and crashes that limit my life activities.

@ Gingergrrl43- I do remember how sick my son was. We weren't even sure if he was going to be able to return to college. He was also a football player and was not able to play his senior year because of what the mono did to him. I have never been that sick so I know for sure I never caught it from him but was definitely exposed because I was taking care of him. I almost think maybe I have recently been re infected....with lyme.

Hope you do well with your new treatment plan. Very excited for you!

 

[SSszonja]

Hello,

did you find any Answer to your probem?I am asking this because I have same symptoms.The most embarassing is the Burning eye.it comes and goes in hours but When it Burns its terrible.Not Burns because of driness its sure.and I have tinnitus also and I have many other symptoms but theese are the worst now.and insomnia.I Think it can be Lyme or bartonella,unless my Westen blot lyme test was negative.and I have an Elispot on the borderline..but it is said that old lyme infection doesnt show in test in most cases.....

I am really trying to figure out what my problem is. I have been tested over and over again for HHV6 and EBV and I have been told that neither are active infections but past...

My body is not right in the fact that I have chronic fatigue...peripheral neuropathy...crashes...burning eye pain...blurry vision...tinnitus...

I am seeing my doctor in a few weeks and need to decide if I should ask about an anti viral or revisit Lyme treatment again.

I have been sick for almost 10 years and I just can't believe that I am still dealing with the same symptoms over and over again. I know I most likely have severe adrenal dysfunction as well as I have tons of low cortisol symptoms.

I am just wondering if any of those symptoms are common to an EBV reactivation. I do not have sore throats...flu like symptoms...muscle aches...headaches...sore lymph nodes....
I only have the symptoms I have mentioned above.

I really don't want to continue on like this for the rest of my life and am very scared that this is what will happen. I also worry about how I will deal with this as I get older (I am in my late 50's) and just am feeling very hopeless. I am blessed I have a husband who is 100 percent supportive but we really don't have even close to a normal life.

I just want to go into the doctors office with a plan to talk with him about and get going on some type of treatment plan....

h

 

[soxfan]

I really haven't found any answers. I am in the middle of Lyme/Bartonella treatment again and four weeks after I started on abx the old lyme rash from 2012 broke out on my back. The doctor felt this was an indication that I still am infected and the medication is stirring up the bugs.
I stilll have many symptoms I feel are CFS related and that no amount of abx will help with those.....

I am going to give it until February and if I feel no better then I am done with treatments....

 

[SSszonja]

I have strange symptoms and I also suspect Lyme/Bartonella. All started with a strong face flush, my eyes and mouth was burning for several days. Then suddenly I had dry eye and mouth. I lost 8 kilos.Anxiety,panic attak, headaches,tinnitus,insomnia.Any of theese do you have? I was examined for autoimmun, nothing.Now the isomnia and the eye symtoms are the worst (very dry and burning but not always! it seems that once it burns my throat is OK, than burns my throat and my eyes are OK and then again! Its mad but I feel this.Like something would go inside my body from one place to another...