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lalalisa

Epstein Barr/Mono and POTS anyone?

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I was diagnosed with POTS after having mono for about 3 months. I've had both now for 1 and 1/2 years. (I still have an active mono infection)

Does anyone else have both of these conditions? (I sleep constantly - actually more than I'm awake!!)

I've often wondered if my fatigue is mostly due to the mono or POTS. (I realize both cause fatigue but I can't stay awake!) What do you think?

I appreciate any input!!

Lisa

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I've had active mono twice, which is supposedly a difficult feat. The first time I got it, I was very ill and ended up in the hospital with an enlarged spleen and a secondary strep infection.

There are many folks with POTS or similar autonomic problems who report a sudden onset of major symptoms following a viral or bactirial infection. Not sure how much it helps to know you're not alone; I know how horrible you're feeling right now. I remember breaking a major sweat just making my walk to the bathroom!

Hang in there as best you can and feel free to use this place of vent and get support.

Nina :)

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Guest Julia

My mother in law had mono three times. She raised 8 kids mostly by herself. Her husband managed a bank by day---and was a musician by night.

She never had POTS---but had a terrible year with suspected CFS. This was following the passing of her husband. Lot of stress that year for her. She seems to be OK right now---but I was appalled at how this cardiologist treated her.

She was concerned about heart trouble at her age--70--so she had a medicated induced stress test. It was a terrible experience---then the Doc told to get more exercise in the rudest fashion. She walked three miles a day before she got sick. She took care of me---by taking me to my appointments while trying to find out what was wrong with me-----about threee months later I was diagnosed with POTs. I think she was sick and recovered just before I got real sick.

She had mono for a year in her 40s , and then another short month or two bout---not sure when. Then the last bout in her seventies which was the time before I got sick. Both my sister in laws are prone to mono also. One of them has had it twice so far.

I may have had it---but i'll never know because I was never taken seriously by anyone---so it would have been hard to find out. I didn't get proper medical treatment until I took matters into my own hands which was right around the time I was the worst I had ever been---bed ridden---30 pound weight loss---fever for four months---and so on. The muscle waste on my legs was frightning. I think that and the weight loss was what put the doctors into gear. Terrible isn't it----proof----they needed PROOF!

I know a lot of people have had both POTS and MONO---eaither the same time as POTS---or just before. A lot of people get it and never get POTS. I think POTS is connected with so many other factors that have not yet been discovered. I think environmental issues need to be looked at a little closer. It would be hard to tell where your fatigue is stemming from---the POTS or the Mono----because both cause fatigue. That is quite a dilemma--I wish I could help you. Some of the symptoms are the same.

Julie :0) :)

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I had POTS before the mono, looking back although my diagnosis came after :) The mono defiantly did make the POTS symptoms a lot worse. There is a link my doctor told me about mono and POTS but with my having had symptoms since I was in 6th grade mine started long before the mono?

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Nina, Julia, and Genie,

I appreciate all of your input! It is so encouraging to talk with others about this - it's so hard because I actually look really healthy (probably cause I sleep so much and drink lots of water =) )

Dr's don't know why my mono infection is lasting so long - it's a mystery to everyone! This is actually my 2nd time with mono and hopefully the last. Maybe I will set a record or something! =)

Thanks again for all of your responses, I am so glad that i found this forum.

Have a great day!

Lisa

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Hi Lisa,

Sorry I didn't respond sooner. I have high EBV titers but I can't ever remember having a formal mono diagnosis in my life. I am however very suseptible to strep throat or other throat bugs -- though it could be post nasal drip causing throat sensitivity in some cases.

In any event ... yes I have high EBV titers and POTS.

EM

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Doctors are finding more and more links between mono and other diseases. One day it may be linked to POTS...there are a lot who speculate that it is. Here is a link where you can read more about EBV and other diseases, but I must warn you that it isn't pleasant reading: Here is the link

Michelle

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Hi Michelle, I read through a few of the article. It figures that the fairly "rare" enlargement of the spleen is exactly what happened to me the first time around. Do you ever feel like a medical train wreck? Geez. If it's a wacky, rare thing, I've got it!

Nina

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Thanks for the warning Michelle, I'll have to read more when I am feeling REALLY REALLY good. :-)

The other "odd" thing I've noticed is the propensity for herpe strains ... like chickenpox or other viruses in that family. I can't remember now if EBV is in that family or not.

I had chickenpox as an adult about a dozen years ago. Some of these viruses just stay in our system and manifest in the least expected ways.

EM

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I was wondering how tired you guys are?

I think having mono is my obvious cause of fatigue - but I guess once I get over it I was wondering how tired POTS makes you.

Are you able to work, etc.? I am pretty much home-bound.

Thanks again for your input!

Lisa

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I am always tired; I hate waking up in the mornings. I feel like a truck has hit me and I have no energy. I basically pray my way out of bed and during the day. I am fighting this with everything I have.

Good Luck! :P

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lalalisa,

I am SO exhausted and am basically home-bound also. I only go out for medical appointments and I don't even do enough of that. B)

ling,

I hate having to get out of bed and face the day too, even though I don't have to go anywhere. :)

Patti

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I think with this ailment, you find out what you're really made of since doing everything is so much more difficult. It takes sheer will to get out of bed when you're body gives you no help at all. The good news for me is I'm quite motivated to get out of bed (I do have 5 animals that need me), so I use my willpower (and I pray a lot too). Then, when I want to do other "normal" activities, like going to a doctor, that takes strength of will as well, since I know I'll feel worse when I have to go and sit there waiting to be called. Most other normal activities take all my will as well, like going to church and sitting there (though, I want to do that as well), and exercising. When I still had my job, it took everything in me to get to work, stay there, and try to perform my duties. I thought I would crack up if I kept that up, so I'm trying to get disabiity now. I do not try to behave as if I'm normal anymore. I've adjusted to the fact that I'm not normal. It's just the way it is. So, I've decreased the demands on myself. I tried pushing it and pretending that nothing was wrong, and that sapped all the life out of me all together. So, what I'm saying is, I'm not working, I do what I can, and I've adjusted to my life with this infirmity. I can empathize with another when I hear the difficulties that they face. I mainly try to keep a positive outlook on everything and not let this "thing" ruin my spirit. That's the key, I think. Your body may not be working perfectly, but it doesn't have to ruin your spirit.

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Futurehope: Well said! It does take sure motivationto get out of bed. I like the days that I have to bring the kids to school, because it gets me up. Sometimes I go home and go right back to bed and their are times I get up. If I don't have anything to get up for I won't. However, I do need days were I sleep in or sleep the day away. I have no choice. My body will not allow anything else. I hate the fatique more than anything as far as my symptoms go.

Back to the Mono topic. My daughter who is being evaluated for POTS had a mono-

type virus. Her spleen was also enlarged. They could not give the virus a name.

Dawn

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It is also really hard for me to get up in the mornings!!

...are most of you unable to work? (I am unable)

I was surprised about how tired you guys are, interesting!

Thanks for your input!!!!!

Lisa

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My wife is unable to work. She tried really hard. She worked at a horse stable for a while. That was way too hard on her. She then shifted to a work at home thing, but still had a commitment to pick up stuff every day and get a certain amount of work done. Between being sick on many days and having total loss of concentration on others, she couldn't continue doing that either, so she quit. She has resigned herself to the fact that she will probably never be able to hold a regular job as there are days when she can't function (either physically or mentally). It is hard for her. Her doctors at Mayo, although familiar with POTS, don't seem to understand the severity of these symptoms. I can go into more detail, but I don't see how anybody with a moderate to bad case of POTS could possibly hold a job.

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Justme, What a relief to hear someone say what I think! The doctors know there is something wrong with me but are unwilling to write anything to Social Security relaying how the condition makes it impossible to work. They just don't know the impact. I suspect not enough studies have been done on the CUMULATIVE effects of activity on our stamina, as well as the cognitive effects of being overly tired. I imagine, in time, more will be understood about the effects of autonomic dysfunction. Until then, I UNDERSTAND, and I'm sure others in our shoes do as well. Thanks for sharing.

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High EBV positive titer here also but never diagnosed with mono.

I work currently as a medical transcriptionist from home which is really a blessing but honestly I can only type a couple hours a day since I got sick last summer...that and clean my house and take care of my pets and run errands on days I have to....it does affect how I think about myself so I have been avidly reading the Bible and a lot of Christian books to lift my spirits and help my spirit adjust to the changes in this physical shell that is seemingly falling apart.

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