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Old 04-13-2009, 07:58 AM   #1
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Mono....or something else?

I found out I have mono about a month and a half ago. However, the symptoms first appeared at the end of january (had no clue it could have been mono then), so I probably first got it then. However, I've had other strange test results.

I had pericarditis from the mono.

I lost a lot of weight due to mono.

Also, blood tests showed I had a very high level of calcium in my blood.
I had a positive ANA, but further testing showed nothing.

The worst of the mono is over. However, I still feel tired/exhausted if I do too much. I am back to work (full time job and part time job). My appetite hasn't returned to normal yet. I can eat, but I don't get that hungry feeling I used to. Just in the last two days, it has felt like my glands are swollen again. And I feel dizzy/lightheaded, exhausted. Just an overall crappy feeling.

Do you think the mono is one thing, but something else could also be wrong with me? My doctor wants to test my blood again in august to check the ANA levels. Because she thinks that might have been due to the mono. However, since I still feel crappy, I can't help but wonder if there is something else wrong?

I've had mono since january (my guess), does it really take this long or longer before you feel like your normal self again?

 
Old 04-13-2009, 03:39 PM   #2
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Re: Mono....or something else?

Hey pixie,

That is quite an unusual story! EBV is well known to be able to cause myopericarditis as well as the other systemic symptoms, but one thing that is NOT consistent with EBV infection is the high calcium. Do you know how high your calcium was? High calcium in the blood is NEVER normal and should always be investigated THOROUGHLY. Has it come back down to normal?

How old are you? Any family history of hyperparathyroidism? breast or colon cancer? lymphoma? Do you have any other medical history? Are you on any medications?

Last edited by harka; 04-13-2009 at 03:40 PM.

 
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Old 04-13-2009, 06:27 PM   #3
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Re: Mono....or something else?

I haven't had my blood re-checked yet. My doctor wanted to wait until august to re-check, you know give it some time.

I'm 28. There is a history of problems with the thyroid in my family, but not that specifically. My grandmother and sister both had goiters, but that was it. No breast or colon cancer and no lymphoma in my family.

I've always been super healthy -- no problems AT ALL until this year, when I got the mono. I'm not on any medications, I don't take anything, not even birth control.

My blood was checked last November (a CBC) and everything was normal then. So, these problems have to be associated with the mono right?

I don't know how high the calcium was.

Any ideas of what the problem could be?

 
Old 04-13-2009, 06:56 PM   #4
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Re: Mono....or something else?

It's hard to know pixie because I don't know the whole story of what happened to you. Mono is an interesting illness. It's almost always caused by either EBV (Epstein-Barr virus) or CMV (cytomegalovirus). Up to 80% of people by the age of 30 have been exposed to both viruses and it of no consequence because the immune system keeps it at bay. It doesn't become a problem unless the person becomes very ill and the virus can then reactivate. Most people when they are exposed to the virus, it is completely asymptomatic and the person is none the wiser. There are some people who develop a reaction when first exposed, and one of the syndromes possible is mononucleosis. In this syndrome, if you check the person's blood, there will be a huge amount of extra "mononuclear" cells floating around in the blood (hence mononucleosis) and there is a lot of fatigue. That is usually it for people with mono; however, the virus can infect many parts of the body and people can also get things like: viral meningitis, pericarditis, myocarditis, pleuritis, hepatitis etc. etc. In your case, the virus decided to attack your pericardium. There is no specific treatment for acute mono--you just watch the person and support them until the immune system takes over.

Now, all that is fine and dandy, but this calcium is worrisome. Obviously I don't know the full story, but a high calcium first of all does NOT go with mono, and it is NEVER normal. When someone has a high calcium it needs to be investigated right away. The fact that your doctor is waiting until August probably means that your calcium was only SLIGHTLY out of the normal range. So, for example, if the normal upper range of normal is 2.52 and your calcium is 2.54, it's not a big deal. If your calcium is 2.8 or 3.0 then that is a problem. The weight loss is also concerning--mono shouldn't really do that. The ongoing fatigue, however, is typical.

Are you having fevers at all? Do you ever have to change your clothes at night because of severe sweating? How much weight do you think you've lost? Where are your glands swollen?

Oh by the way, the positive ANA can definitely be from an acute viral infection--it will be good to repeat that in a few months, but I really hope that if your calcium was high your doctor is all over that.

Last edited by hb-mod; 04-29-2009 at 01:24 AM. Reason: Please don't "Quote Reply" an immediate prior post. Use "Quick Reply" instead. Thanks!

 
Old 04-13-2009, 07:10 PM   #5
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Re: Mono....or something else?

I will ask my doctor tomorrow what my calcium level was. I'm sure if it was really really high she would have been really concerned.

I don't have night sweats at all. I was feeling feverish during the worst stage of the mono. That ended when the worst feelings ended. However, just yesterday, I felt feverish. My glands felt swollen right on the sides of my neck. However, today the feverish feeling is gone and the glands don't feel swollen anymore.

I've lost 20 lbs. My appetite comes and goes. However, I have no nausea anymore or anything. I am eating...just not the same as I was before.

I don't know if this is important, but I was having lots of pain in my left lower side of my back and around to the side of my rib cage. I thought it could've possibly been my spleen or something enlarged. That waned to just a discomfort after about a month and now it feels normal again.

 
Old 04-13-2009, 07:20 PM   #6
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Re: Mono....or something else?

Hey pixie,

Yeah, it's probably a good idea to take these symptoms up with your doctor. Does your doctor know about this 20lb weight loss? If not, that should be the most important thing you tell her.

Last edited by hb-mod; 04-29-2009 at 01:25 AM. Reason: Please don't "Quote Reply" an immediate prior post. Use "Quick Reply" instead. Thanks!

 
Old 04-15-2009, 06:13 AM   #7
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Re: Mono....or something else?

Hello pixie,

As someone who was diagnosed with mono at an advanced age, , over 40, I take note when I see posts about mono as I'm interested in comparing my experience (I had serious complications) to others and to provide support when I can.

Over the past two years, I've read many posts that mention mono (or glandular fever as they call it in the UK)...and yours is similar to many/most. The high calcium is not a surprise as I've seen references to that before also. What is a surprise is that you are still posting here, on the Infectious Disease Boards, and not elsewhere!! Usually by the time I see the posts with the symptoms you mention, the symptoms have escalated and the mono is simply mentioned more or less as a part of the case history or the "beginning" of the downward spiral. Also, by that time other lab work is out of line in some minor, unexplainable way---anemia, low vitamin D levels, thyroid readings are just a few of the things that come to mind...but the doctors can't explain why, and the symptoms often get worse or change.

pericarditis
weight loss
high levels of calcium in blood
poor appetite
swollen glands
dizziness
feeling lightheaded,
exhaustion
a feeling of malaise
back pain
pain in rib area

All of the above symptoms could be from an undiagnosed bacterial infection (not mono)that few doctors know how to diagnose/treat. Sometimes the person has these symptoms before they get mono, sometimes after. Although this bacterial infection mimics many diseases (like fibromyalgia, lupus, or MS), I've never read that it mimics mono...but yet often both seemed to go hand in hand and I didn't understand why....UNTIL last night when I was reading a book titled Beating LYME in which Lesley Ann Fein, MD. MPH said that (board rules forbid quoting so these are my words), mono and Lyme disease like to live together...you can't kill one unless you kill the other. And although not all of the symptoms you are experiencing are that of mono, they can be of Lyme!

Unfortunately some doctors/scientists/businesses may have ulterior motives for limiting accurate knowledge of this disease...if you choose to explore this possibility, you'll need to do some serious reading to learn what is myth, what is propaganda, what is known, and what is to be learned.

Keep an open mind and you'll find answers.

Bethsheba

Last edited by bethsheba; 04-15-2009 at 06:15 AM.

 
Old 04-15-2009, 07:27 AM   #8
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Re: Mono....or something else?

Thanks so much for your input!! It really helps to hear what others think.

I missed my doctors appointment yesterday (flat tire!), I had to reschedule for tomorrow. I think I may ask her to run the blood tests again.

There are a couple of things I forgot to mention before. I've also had shortness of breath and heart palpitations. Those seemed to have went away also. Except for the last few days, I've been experiencing a little shortness of breath again. It seems like the shortness of breath and low energy levels go hand in hand, at least it feels that way to me.

Also, my first blood test in february showed I had an infection, so I took antibiotics for it. My doctor just assumed upper respiratory infection. *I* think it was an ear infection.

However, I do want to point out I am improving health-wise. Definitely way better than what I was a month/2 months ago! I felt like I was dying then!!! Now, I feel like I am getting better. I just want to be *sure* there isn't something wrong with me along with the mono.

I was researching different things on the internet (don't know if that is truly helpful), but I did come across lyme disease. However, I've had no exposure to ticks whatsoever...so I don't think that is a possibilty. However, I don't know if this could be related, but a bat found it's way into my apartment last November. The bat was sent to the CDC and was tested for rabies and it was negative.

Also, I've been a nut about eating healthy and making sure I get enough nutrients/vitamins/minerals. I've been keeping super-hydrated and making sure to get plenty Omega-3. I've totally cut out alcohol and candy/sweets. I actually think it's been helping a lot.

Bethsheba -- how long did it take you to fully recover from the mono? Did you find anything that helps speed up the recovery process? What kind of complications did you have?

 
Old 04-15-2009, 08:45 AM   #9
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Re: Mono....or something else?

Pixie,

Everything you've written on the post above suggest Lyme...your symptoms may have improved (temporarily??) because of antibiotic treatment...but shortness of breath, heart palpitations, low energy levels, ear infections (as well as chronic sinus, bladder, and yeast infections), are just a few of the symptoms that people with Lyme can experience.

Quote:
Originally Posted by pixie102 View Post
... I was researching different things on the internet ...but I did come across lyme disease. However, I've had no exposure to ticks whatsoever...so I don't think that is a possibilty...
Already you are buying into some of the myths out there...ticks are only one way this bacteria is transmitted. There is some evidence that mosquitoes, fleas, spiders, gnats, and flies may also transmit this disease...if bats and fieldmice can get into your house, they can bring in other things and those other things can infect you without your knowledge! And if you have bats, you have mosquitoes! (Oh the bats and rabies connection is another myth...at least in our state. Once these myths get started it is difficult to dispell them).
Quote:
Also, I've been a nut about eating healthy and making sure I get enough nutrients/vitamins/minerals. I've been keeping super-hydrated and making sure to get plenty Omega-3. I've totally cut out alcohol and candy/sweets.
If it's Lyme it may make a difference. Lyme and some of the coinfections "throw parties" when they can eat carbs, sugars, and alcohol....one symptom of Lyme is an unusual reaction to alcohol...and many Lymies find that carbs and sugars fuel uncontrolled yeast infections.

Pixie, I fought infections for over two years after having mono...the most significant one was a bacterial infection that was eating away at my hand (my doctors told me later I could have lost it). At first, I too, attributed these problems to mono (my doctors did say the hand infection was a result of prednisone suppressing my immune system)....years later I realized other problems may also have been due to the prednisone...and now, I can't help but wonder if Lyme was the real culprit.

Pixie, I never stop looking for answers...information can change on an hourly/daily/weekly/monthly basis...and as you're starting to find, the information is not always accurate or up to date! It is critical you do your own research as specialists tend to look only at their speciality when they really need to see then entire picture/health history to make a diagnosis.

Pixie, I can't diagnose you...I'm not a health care professional...but in my opinion, your health may change...an accident, stress, or an illness may throw your immune system out of whack big time...and if that happens you may spiral downward once again, so please, remember what I said about the Lyme.

Bethsheba

I also lost about 20 pounds despite being on medication that had "weight gain" as a side effect.

Last edited by bethsheba; 04-15-2009 at 05:27 PM.

 
Old 04-15-2009, 03:52 PM   #10
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Re: Mono....or something else?

Hey Pixie,

Yeah, so you're probably right that Lyme disease is very unlikely. It's good that you eat well and live a healthy life as that will help you get over the mono more quickly. It can take a few weeks to completely get over the mono, but people who have good baseline health prior to the bout of mono (which is usually the case because normally young people get it), so they get over it just as easily.

There is a broad differential diagnosis for hypercalcemia, and there is a relation with certain infections (and inflammatory conditions) which result in something called "granulomatous inflammation". The most "common" things that cause this type of inflammation include things like tuberculosis, fungal infections and some other weird things--in other words, not what you have. In a young woman, non-infectious things like hyperparathyroidism and hyperthyroidism need to be ruled out. There are a few other blood tests which need to be done as well.

One final thing: there was a list of symptoms you described which include things like feeling crappy, fatigue, muscle pains etc. etc. One misconception about medicine is that a diagnosis of a disease can be made by matching a list of symptoms--it just doesn't work that way. Sometimes you can do it with simple things: if you show up to the ER with crushing retrosternal chest pain and have a history of a previous heart attack, well, that is a fairly good story for a heart attack. Unfortunately, if it were that easy, doctors wouldn't require as much training as they do.

Symptoms such as fatigue, malaise, swollen glands, muscle pains, diffuse weakness, headaches WITHOUT red flags etc. are all what are called NON-SPECIFIC symptoms. Yes they can occur in mono, but they can occur in MANY MANY MANY other conditions which may be infectious or not. In other words, those symptoms are not SPECIFIC to mono. Certain symptoms are more specific than others. If someone turns yellow, or coughs up a large amount of blood, well, the list of possibilities becomes MUCH more limited. Turning yellow (or jaundice) is much more SPECIFIC for something like liver disease. To show you an example take the following:

Mono can present with: malaise, swollen glands muscle aches
Tuberculosis can present with: malaise, swollen glands, muscle aches
Adult Fanconi's syndrome can present with: malaise, swollen glands, muscle aches
Pneumonia can present with: malaise, swollen glands, muscle aches
Carbon monoxide poisoining can present with: malaise, swollen glands, muscle aches and so on.....

This is why the internet can be misleading for people with no medical training. You can put those three symptoms in to google and BLAM, come up with a diagnosis of cadmium poisoning, and then be convinced when you go to the doctor because "your symptoms are all the same". Hopefully though, I've explained to you why that doesn't hold true in most cases.

Anyway, I'm glad you feel better and I wish you a speedy full recovery.

Last edited by hb-mod; 04-29-2009 at 01:31 AM. Reason: Excessive use of "Quote Reply".

 
Old 04-17-2009, 07:01 AM   #11
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Re: Mono....or something else?

I went to the doctor yesterday. She is going to re-test my ANA and my calcium. I have yet to get the blood test, but at least I know I am getting re-tested. Their hours that they are open don't match up with my work schedule. So I have to wait until monday to get blood taken.

However, my appetite is back to normal completely. So, I take that as a good sign. I still have the exhaustion associated with the mono.

Also, I have results from a blood test from last november. AND, my calcium level was 10.10 then. So, it was high back then too. The highest of the normal range said 10.6. So...I'm not sure what to make of that. Maybe I just have high calcium? But as you've stated, that is not normal...so...??

 
Old 04-17-2009, 03:59 PM   #12
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Re: Mono....or something else?

Ohhhhhhhh, okay....so your calcium is only very slightly elevated. That's not a bad thing. By high, I thought you meant way out of the normal range. As long as you don't have symptoms of hypercalcemia, then you'll be fine--it's a good idea to get it checked out.

I'm glad you're feeling better.

Last edited by hb-mod; 04-29-2009 at 01:32 AM. Reason: Please don't "Quote Reply" an immediate prior post. Use "Quick Reply" instead. Thanks!

 
Old 04-21-2009, 09:27 AM   #13
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Re: Mono....or something else?

Well. I got my blood test results back. My calcium level is normal. And my white blood cell level is normal. Thank goodness.

However, the nurse said they are waiting for my other blood test results (ANA). Hopefully it didn't test positive again. Now that worries me. That means inflammation, right? I feel fine now though. My appetite is 100% back to normal now. And the tired/exhausted feeling is waning as the days go by. So...I hope the ANA isn't positive again.

Anyhow, I truly think that the virus has almost completely run it's course. And my improvement is due to my improved diet. I really do. Lots of water, Omega-3, antioxidants, fruit, veggies, protein, coconut water. No sugar or alcohol or junk food. I think it all really helps A LOT!!!

And bethsheba. I got your Private message, however, I couldn't reply to it.
Thanks for sharing your story with me! I hope things are okay with you now?

 
Old 04-21-2009, 06:33 PM   #14
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Re: Mono....or something else?

Hey pixie, we're all glad you're feeling better.

The ANA or anti-nuclear antibody is a very complex medical entity. In simple terms, it is a test which looks for antibodies in YOUR body which are directed against elements of your OWN nuclei. The ANA is positive in many autoimmune conditions such as lupus; however, no need to get alarmed because while it is positive in things like lupus, it is by no means specific for lupus. It can be weakly positive in many other conditions (including certain viral infections) and it doesn't mean a thing. In medicine we speak about "sensitivity" and "specificity" of different tests. It just goes to show you that testing is by no means perfect.

If a test is very SPECIFIC, that means if it's positive you can believe it, but if it's negative, that doesn't mean that you can rule out a disease.

IF a test is very SENSITIVE, that means if it's negative you can believe it, but if it's positive that doesn't necessarily mean you have the disease.

The ANA is a very SENSITIVE test. If it is negative, then the chances of someone having lupus are almost zero; however, if it is positive, it doesn't necessarily mean anything.

This concept is very important for doctors to explain to their patients because many people have the false view that medical tests are all created equally and can be relied upon in all settings. That's not to say there aren't tests that are BOTH sensitive and specific--you just have to know the characteristics of the tests ordered. Part of doctors' extensive training is learning about said test characteristics.

Last edited by hb-mod; 04-29-2009 at 01:33 AM. Reason: Please don't "Quote Reply" an immediate prior post. Use "Quick Reply" instead. Thanks!

 
Old 04-23-2009, 08:55 AM   #15
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Re: Mono....or something else?

Thanks for your explanation about the ANA test. I still have not heard back from my doctor about it.

I'm feeling not well today. I wonder if it's still the lingering mono? Just tired, lightheaded, head feels heavy, muscles ache. Just an overall sick feeling. Or maybe allergies? It's hard to tell these days.

However, I do have more good days than bad now.

 
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