Common symptoms related to reactivated EBV?

[soxfan]

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....

 

[SOC]

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...

Who is telling you this? Most doctors go by a rule of thumb -- negative IgM, high IgG means past infection -- and ignore the caveat that this is only true if the patient had a recent infection, and is asymptomatic and immunocompetent. Since ME patients often had the first infection decades ago, and are symptomatic and immunodeficient, their assumptions fail the reality check, but that doesn't seem to bother them. They applied the rule of thumb, they're done. No thinking required.

I once had a doctor who told me my results only indicated a past infection and I shouldn't be on the AVs my specialist prescribed. I asked him what he would think about my lab results if I was immunocompromised -- an HIV patient or a transplant patient. His answer? "Well THEN these results would worry me, but you are not immunocompromised, now are you?"

If you really want to be adequately tested and have the labs correctly interpreted for an ME patient, I think you need to see an ME/CFS specialist who treats herpesviral infections and does immune testing. Local doctors -- even infectious disease specialists -- just don't get it.

 

[heapsreal]

Maybe sinusitis especially frontal sinusitis. Give it a Google. It can cause pain around the eyes forehead and face. Don't have to have a runny nose especially if it's really blocked up there. Symptoms are usually a lot worse when u wake up or the facial pain can wake you up. It's worth looking into as i think the fatigue part can be as bad as cfs but slightly different.

 

[Gingergrrl]

@soxfan I have chronic re-activated EBV and can tell you what my symptoms are but the problem is that each person is so different that it makes it so freaking complicated!

I would get the full EBV panel done if you want to confirm (IgG, IgM, early antigen, EBNA, and Viral Capsid Antigen.) I was high positive on all five but I don't think that needs to be the case for a confirmed positive.

My symptoms are severe fatigue (sometimes often as bad as the original mono), PEM after minimal exertion, and horrible autonomic dysfunction- inappropriate sinus tachycardia/POTS type stuff, OI, shortness of breath, etc. Nothing regulates any more so I have low blood pressure, low blood volume, low temperature and often just feel sick as if I have a fever and freezing cold yet my temp stays very low.

I had horrible nausea/GI problems but this has been significantly improved by working with my NP. Sometimes I get headaches and dizziness but this is not my main issue. I also get some muscle pain especially in my calves and arms and I frequently get unexplained bruises. I also have noise intolerance but this varies in severity. Not sure if this helps as I said two people can have the same virus and very different symptoms.

ETA: I also developed thyroid problems/Hashimoto's Disease after having mono and my doctors feel the EBV was an immune trigger of all the different dysfunctions.

 

[soxfan]

@SOC- I actually was a patient of Dr. Komaroff. He told me that my EBV was not an active infection. I would hope he did the correct testing and would know how to interpret my results. His exact words were "it could be somewhat active". What in the world would that mean....it either is or not. That statement tells me that he wasn't sure.

What exactly is immune testing? I have had a CD57 done and some other testing...I would have to look to see exactly what it was...lots of tests from My Lyme doctor as they took 14 vials of blood at the visit.

@Gingergrrl43- I had the complete EBV panel done and the only thing that was elevated was the antibodies to past infection. Everything else was considered negative.
I have never had mono in my life so I am guessing I was at some point exposed to the virus?

@heapsreal- The pain I have feels like my eyes are dry and it is a burning pain. I use drops all day long but it doesn't help. My vision is also incredibly blurry most of the past couple months. Went to the eye doctor and my eyes are not dry and she has no idea why my vision is suddenly so blurry. It comes and goes...

So I am definitely going to talk with my doctor. I can post all my test results if that would help anyone but like I said only the past IgG was elevated on both EBV and HHV6

Thanks everyone!.

 

[heapsreal]

@SOC- I actually was a patient of Dr. Komaroff. He told me that my EBV was not an active infection. I would hope he did the correct testing and would know how to interpret my results. His exact words were "it could be somewhat active". What in the world would that mean....it either is or not. That statement tells me that he wasn't sure.

What exactly is immune testing? I have had a CD57 done and some other testing...I would have to look to see exactly what it was...lots of tests from My Lyme doctor as they took 14 vials of blood at the visit.

@Gingergrrl43- I had the complete EBV panel done and the only thing that was elevated was the antibodies to past infection. Everything else was considered negative.
I have never had mono in my life so I am guessing I was at some point exposed to the virus?

@heapsreal- The pain I have feels like my eyes are dry and it is a burning pain. I use drops all day long but it doesn't help. My vision is also incredibly blurry most of the past couple months. Went to the eye doctor and my eyes are not dry and she has no idea why my vision is suddenly so blurry. It comes and goes...

So I am definitely going to talk with my doctor. I can post all my test results if that would help anyone but like I said only the past IgG was elevated on both EBV and HHV6

Thanks everyone!.

Dr Komaroff from what i have read about him just isnt much of a believer in antivirals. He sounds like a by the book guy using supportive treatment. Very knowledgable about the condition and very pro research. Just my opinion, i would have gone to one of the other gurus, peterson, klimas, kogelnek, chia.

 

[Mij]

@soxfan I was looking over my files from 12yrs ago and my EBV and HHV6 both showed positive IgM ("reactive"). This showed positve soon after I had a relapse from taking Imunovir. An immune shift? Normally I request copies for all my lab work but for some reason I did not get these. My doctor mentioned to me that they were positive but didn't feel the need to treat it(??). Possibly because I was so bad from the relapse.

I can't tell you what the common symptoms are for EBV because I think our whole immune system is unbalanced.. It's possible it may start to show positve once the immune system shifts?. I know dizziness is a big one for me, sore lymph nodes/ears, sore/stiff muscles in my arms and hamstrings. I hope you can find some answers.

 

[soxfan]

@heapsreal- you are right about Dr. Komaroff...he did not believe in anti virals and was definitely a by the book guy. He did have me try Nexavir which I am sure you have heard of but the injections were painful and I had no response to them.
I thought by going to Dr. Komaroff I was seeing one of the best. I had no idea what his views were on treatments or testing. I actually wrote him a personal letter in the hopes he would take me on and he did even though at the time he was not accepting patients. I was so hopeful....at the time.

At that point I had already spent a fortune on the big time Lyme docs and really couldn't afford to see someone else.


@Mij- I have been tested at least 4 or more times for these virus's and they always have the same result. I was on Valtrex long ago but not for a long period of time. I also tried Valcyte but had horrible side effects and couldn't tolerate it at all....I just pulled out all my test results and the Lyme docs tested for everything. I have pages and pages of results and they tested for all the different virus's and IgG subclasses so I think they covered a lot.

I am never ever sick and haven't been in 10 years...no sore throats...flu...colds...nothing at all. I seem to be totally immune to any illness. I even worked in a drug store where I was surrounded by sick customers....

 

[Mij]

@soxfan I was just like you with NO symptoms for 11yrs until I took immune modulator Imnovir. My immune system has shifted since then. Now I have viral symptoms 80% of the time. I don't "catch" anything like the regular flu either, just these persistant reactivating latent viruses.

Does Valcyte work the smae as Imunovir? Does it shift the immune sytem too?

 

[SOC]

@soxfan I was just like you with NO symptoms for 11yrs until I took immune modulator Imnovir. My immune system has shifted since then. Now I have viral symptoms 80% of the time. I don't "catch" anything like the regular flu either, just these persistant reactivating latent viruses.

Does Valcyte work the smae as Imunovir? Does it shift the immune sytem too?

You might want to read about IRIS. It may not be exactly what's happening when we take Imunovir or Valcyte, but the general mechanism may be playing a part. A weak immune system coming back online can make you feel pretty awful, apparently.

 

[Mij]

You might want to read about IRIS. It may not be exactly what's happening when we take Imunovir or Valcyte, but the general mechanism may be playing a part. I weak immune system coming back online can make you feel pretty awful, apparently.

Yikes! This could be it. You know, my CD4, CD8, ratios etc were normal when I became ill in '92. In 2002, 3 weeks after taking Imunovir I could no longer walk on a downtown street It was a major sudden reaction. My legs froze like ice- everything changed after that. When my CD4 ratios etc retested in 2002, they all dropped below normal and the ratio increased.

The link you posted says this, "Though these symptoms can be dangerous, they also indicate that the body may now have a better chance to defeat the infection." I dont' know about that

@soxfan I'm thinking it was a good idea that you stopped taking Valcyte with the bad reaction you had.

 

[Gingergrrl]

@Gingergrrl43- I had the complete EBV panel done and the only thing that was elevated was the antibodies to past infection. Everything else was considered negative. I have never had mono in my life so I am guessing I was at some point exposed to the virus?

@soxfan, It sounds like if you had the entire EBV panel and it was negative except IgG, and you did not have mono, then you probably do not have an active EBV infection- but this is just my opinion, so please verify with whichever new MD you end up seeing.

Dr Komaroff from what i have read about him just isnt much of a believer in antivirals. He sounds like a by the book guy using supportive treatment. Very knowledgable about the condition and very pro research. Just my opinion, i would have gone to one of the other gurus, peterson, klimas, kogelnek, chia.

Although I know it is an incredible amount of time, energy, money, etc, I still think it is worth it to go see one of the other "gurus" if you can. I am obviously biased toward OMI but I think any of them can help you and would base your choice on their availability and your ability to travel (I think Cheney is closest to you geographically but not sure if he is seeing new patients?)

Also, b/c you mentioned having Lyme, which I do not have, it is another confounding variable where not sure if straight anti-virals would work vs. antibiotics (others know much more on this topic than me.)

 

[SOC]

Yikes!
The link you posted says this, "Though these symptoms can be dangerous, they also indicate that the body may now have a better chance to defeat the infection." I dont' know about that

The point is that the treatment is improving your immune function so now your immune system can go after infections it wasn't dealing with adequately before treatment. This IS a good thing.

Of course you can't let the rxn get completely out of hand, but HIV and post-transplant docs recommend patients stick it out, up to a point. Yes, you feel like crap for a while because your immune system is now fighting again, but it's worth it to deal with the occult infections. The infections aren't good for you either, so better they're dealt with.

 

[Mij]

@SOC that is a scary thought for me- "stick it out". To what point though??

 

[SOC]

@SOC that is a scary thought for me- "stick it out". To what point though??

I really don't know. Doctors seem to recognize when a cytokine storm becomes dangerous, and apparently have ways of dealing with it. There's some info in the Wikipedia page on this and a lot more from more reliable sources, I'm sure.
Wikipedia IRIS article

Though these symptoms can be dangerous, they also indicate that the body may now have a better chance to defeat the infection. The best treatment for this condition is unknown. In paradoxical IRIS reactions, the events will usually spontaneously get better with time without any additional therapy. In unmasking IRIS, the most common treatment is to administer antibiotic or antiviral drugs against the infectious organism. In some severe cases anti-inflammatory medications, such ascorticosteroids are needed to suppress inflammation until the infection has been eliminated.

Notice that they are not recommending stopping the medication.

That isn't to say that any bad rxn to Valcyte, Imunovir, or any other medication should be ignored. Not at all! I'm just saying that it's important to be aware that difficult periods with some medications are not necessarily a bad sign. Following one's doctors guidance on these sorts of things is the best idea.

I had a rough 10 weeks on Valcyte. It was like a really bad crash plus shingles. NOT fun at all, but not unbearable either. I felt SO much better once it was over. Not better than before the rxn, better than I'd felt after years of ME. So for me, it was well worth it. I'd go through it again to get the same amount of improvement.

Now my uncle and my daughter, they had NO problems with Valcyte at all. But then, neither one was as sick as I was, so that may be a factor.

 

[Mij]

@SOC yes, following an experienced doctor's guidance is the key! It's certainly reassuring. I'm glad you improved on Valcyte


I would like to try Valcyte but only with an experienced doctor because if I got one weird symptoms I would stop in fear.

 

[SOC]

I would like to try Valcyte but only with an experienced doctor because if I got one weird symptoms I would stop in fear.

Absolutely!!!! Valcyte has too many potentially very serious side effects for anyone to self-treat with it, imo. The side effects are reversible if caught in time, which is why knowledgeable doctors do frequent testing of the relevant parameters to watch for any problems developing. I'd be very frightened for anyone taking Valcyte not under the care of an experienced doctor.

 

[Mij]

@SOC I thought I was under the care of an experienced doctor who did a study with Dr. Hyde on Imunovir with CFS pts. He didn't understand what happened to me. He said most of his pts felt less "fatigue" on Imunovir.

Valcyte is one drug that needs to be totally monitored for sure.

 

[soxfan]

@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. Of course when I first became sick the doctors didn't do any of the viral testing because basically they didn't believe anything was wrong with me....I only had the viral testing done years later but they were negative. I don't think I would get any doctor to give me anti/virals nor would I want to take them with these test results.

Valcyte just gave me really bad insomnia and sleep at the time was one of my worse problems so I stopped it. It didn't make me feel sick...just some side effects that the doctor had warned me about. I basically asked to try it since I wasn't feeling better. I am not sure he really wanted to put me on it at the time.

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 have so many symptoms on the Low Cortisol list but it doesn't help if I take cortef...only makes me sleepy so I am going to try and support the adrenals instead with supplements. They should be here on Monday.

In all honesty if I didn't have the chronic tiredness I could live pretty much a normal life. The neuropathy pain I can deal with and it doesn't stop me from doing anything. It is just annoying and at times really painful....

I wake up tired (have had 3 sleep studies)....tired the entire day....go to bed feeling a little less tired but then am wired and can't sleep....

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....

 

[SOC]

@soxfan,
I don't remember, have you been tested and/or treated for forms dysautonomia? That could be causing constant fatigue.