At least now I know...(long)

Reese777

Cathlete
Hi Guys,

I have logged in here and whined about how I'm tired and feel sick/lousy and have gained weight probably since fall of 2006. I used to run 5 miles a day several days a week and lift regularly and that slowly came to a stand still. About a week or two ago, I could barely climb a flight of stairs without feeling sick from exhaustion. Well, now I know why.

In 2007 I developed a rash that was very itchy on my neck and chest and a few weeks ago it was particularly flared so I started researching things. I thought it might be candida overgrowth, so I went to the doctor. They referred me to a specialist. This guy is an allergy/immunologist specialist. He ran allergy tests on me (the pin pricks on your back things)...and ironically, all I reacted to was mold and just a little...nothing major. So he had me get blood work. They tested for anything and every thing.

I went back this past tuesday, and he had the results. The first thing he said was I have an autoimmune thing going on where my body is beating up my thyroid, but thankfully, the hormones are okay for now. I also had a positive rheumatoid indicator, but not the arthritis. Then he said my vitamin D was very low, which could explain the skin issues. Normal range was something like 32 to maybe 1000 and I'm at 24.5. So now I have to take 50K of vitamin D a week for 8 weeks.

The most important thing he found was Epstein Barr. He said that it's measured in titers? (I won't do this justice I know...) he said there are four titers; the first two indicate accute infection of the virus and the last two indicate that you have had it and your body is getting it under control. Well, my test came back positive on ALL FOUR TITERS. So he said I'm sick. That's why I"ve been exhausted and feel so lousy. So, now I'm taking meds for that too. I'm hoping I'll feel better soon. I've only been on the meds for two days now, and I can't say I see a huge improvement. But, I'm trying to keep my hopes up!

I'm not happy to be sick, but I'm happy I finally know what the heck is wrong with me. I can't tell you how many times I've gone to someone telling them my symptoms and they want to toss me some antidepressants and all along I've been sick...so annoying!

So, at least now I know!
 
So you have Mono or some other kind of Epstein bar virus, not sure how that all works? Poor thing! It can be pretty miserable and EB affects everyone differently. My DH had it and barely noticed it. My mom had it and it kicked her butt, but only in the way of making her very tired all the time and running a low grade fever. When I got it, it manifested like the mother of all strep throat infections. It can really run you down especially if you do not know you have it and you are trying to just push through the exhaustion. I think there are connections between EB and Chronic Fatigue syndrome. Hope you are feeling better soon!
 
I had Mono in the Navy and I feel for you. It took them forever to diagnose it and it took forever to get over it. Hope you feel well soon. :)
 
Well I'm glad you found out. I know how crazy it can make you feel. You know something is wrong, . .but the Dr's can't just figure it out. You start to wonder if your a hypocondriac and if it really is just nothing and you start to give up and just live with the worst of the symptoms, . . . I've been there, . heck I'm still there. I just wanted to wish you a speedy recovery and hope you feel better.
 
"I'm tired and feel sick/lousy and have gained weight probably since fall of 2006"

I totally know how you feel, not knowing or having a diagnosis is so stressful and frustrating!! So glad you are finding out what is wrong...I hope things get better soon!! What you said above is textbook hypothyroid symptoms...

I have autoimmune thyroid disease (Hashimoto's) and just want you to know that MOST doctors disregard this as an issue if TSH and other thyroid labs are "normal," even if patients are symptomatic. There is severe under-treatment for thyroid disease in this country. Just wanted to let you know that just because they say it's fine doesn't mean it is. The thyroid plays a huge function in energy/fatigue, etc. If you have thyroid questions you can PM me, and also www.medhelp.org thyroid forum is great--they also have many other disease forums you might want to check out--very active support groups.

I posted an article on the forum--you can search for it called "autoimmunity a major women's health issue" that is very interesting.

Good luck to you and hugs,
 
Is your doc saying you've had mono since fall of '06, or you acutely have it now?? If the case is the former, that honestly makes no sense. And since EBV is viral it really does have to run its course except for taking some pain meds if your throat is really sore etc, sometimes people are put on steroids, other than that there are no real meds for it. Hope you're feeling better soon though, autoimmune things run in my family too and they're hard things to diagnosis and figure out!
 
Is your doc saying you've had mono since fall of '06, or you acutely have it now?? If the case is the former, that honestly makes no sense. And since EBV is viral it really does have to run its course except for taking some pain meds if your throat is really sore etc, sometimes people are put on steroids, other than that there are no real meds for it. Hope you're feeling better soon though, autoimmune things run in my family too and they're hard things to diagnosis and figure out!


Stacy - I kind of wondered the same thing. I've never heard of mono lasting 3 years. And there is no medication for it. All they could do for me was give me pain meds to deal with my throat issues. I have been told though that once you have had mono, you will always test positive for it. The EBV stays in your system basically forever. So it's possible that she had mono at some point, but not necessarily for all 3 years. I would still think there is something else at play, but I'm not a doctor.
 
Is your doc saying you've had mono since fall of '06, or you acutely have it now?? If the case is the former, that honestly makes no sense. And since EBV is viral it really does have to run its course except for taking some pain meds if your throat is really sore etc, sometimes people are put on steroids, other than that there are no real meds for it. Hope you're feeling better soon though, autoimmune things run in my family too and they're hard things to diagnosis and figure out!

Actually, that's not true. Mono is caused by the EBV - they aren't the same thing:

"Infectious mononucleosis, or "mono," is a contagious viral illness that initially attacks the lymph nodes in the neck and throat. When these tissues become less effective in fighting infection, sore throats, swelling of the nodes and fever may result.

Mono is caused by the Epstein-Barr virus, which is named after the scientists who first identified it in the mid-1960s. The virus enters the lymph nodes and attacks the lymphocytes (the white blood cells manufactured there). As the white blood cells come into contact with the virus, they change shape and multiply. At first, there are no symptoms because it takes several weeks before enough of the altered cells can accumulate to generate infection."

There are medications to treat EBV - namely acyclovir and Valtrex - in order to help your immune system get the infection under control; these are herpes medications. They are prescribed because EBV is in the herpes family.

The doctor did not say I have mono, he said I have a very acute case of EBV....
 
Stacy - I kind of wondered the same thing. I've never heard of mono lasting 3 years. And there is no medication for it. All they could do for me was give me pain meds to deal with my throat issues. I have been told though that once you have had mono, you will always test positive for it. The EBV stays in your system basically forever. So it's possible that she had mono at some point, but not necessarily for all 3 years. I would still think there is something else at play, but I'm not a doctor.

EBV and MONO are not the same thing - EBV causes MONO....see my response to Stacy.
 
EBV and MONO are not the same thing - EBV causes MONO....see my response to Stacy.

Yeah, that's why I asked in my original post if he said you had mono or some other EBV infection. I'd never heard of mono lasting that long, so I thought something else had to be at work there.
 
Yeah, that's why I asked in my original post if he said you had mono or some other EBV infection. I'd never heard of mono lasting that long, so I thought something else had to be at work there.

If you read my original post, it says nothing about Mono. I only mention EBV, which can be chronic.

I did have Mono in highschool - brutal. I lost 9 pounds in 3 weeks and missed three weeks of school. The EBV caused the Mono and EBV stays in your system forever; it stays dormant in your spine.

I think there is a common misconception that EBV and Mono are one in the same and they aren't....and you can have EBV and have no symptoms at all, which is probably why mine went so long without a diagnosis.
 
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The first line of my post. :) What does it matter anyways? Most people assume when they hear EB that you are referring to Mono. It was an honest mistake and you set it straight. It's not like anyone accused you of having leprosy or anything. :) We all hope you are feeling better soon! I'm sorry it went so long before being diagnosed. I know that must have been frustrating!
 
The first line of my post. :) What does it matter anyways? Most people assume when they hear EB that you are referring to Mono. It was an honest mistake and you set it straight. It's not like anyone accused you of having leprosy or anything. :) We all hope you are feeling better soon! I'm sorry it went so long before being diagnosed. I know that must have been frustrating!

Thank you so much Amber for your well wishes. From the bottom of my heart I appreciate them!
 
Hopefully the medicine will help give you some relief from your symptoms very soon! It took them forever to figure out I had Mono when I came down sick a few years ago. They thought it was strep at first, but of course the test came back negative. Then they put me on round after round of antibiotics which only made me sick. FINALLY, I went back for the 4th time and told them to FIGURE IT OUT! They did a blood test for mono (heaven knows why they didn't do that at first) and I finally had an answer. I wanted to kill the doctors and this only went on for several weeks so I can only imagine how it would feel to go on like that for 3 years!!!
 
I'm so glad they finally figured out what was wrong. I'm sorry you've been feeling so bad for so long but it's they finally did figure it out. I hope you get to feeling better soon. Just continue to take it one day at a time. Like everyone said the hardest part is not knowing & now that that hurdles been overcome hopefully you are well on your way to a speedy recovery. Sending you {{{hugs}}}} and positive thoughts.
 
It is almost unheard of to have the EBV show up as a past virus and a current virus at the same time because once you get it, you are not supposed to get it again - kind of like chicken pox. Or so they say......but it can happen. It happened to my son who had the same bloodwork results. We couldn't figure it out since we knew what he had the first time. But he just never fully bounced back and after about a 1 to 1 1/2 years his doctor sent him for a full workup of blood and the EBV showed up as a "past" and "current/accute" infection. Our pediatrician told us at the time, it is rare but it can happen.

Unfortunately, they can only treat your symptons since it is viral and not bacterial. Hopefully you can get some serious R & R and feel better soon.
 

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