Undiagnosed?

[Boss12345]

All, long story short I had a sore throat covered in pus for three weeks. Completely covered. Attempts to cure with antibiotics didn't work. At the third week I had a positive mono spot test.

I felt tired for a full year and am just now recovering. The strange part that makes me worry is that now I constantly have random body pains, flat bald spots on my tongue that heal in about a week, and painful mouth ulcers that last three weeks at a time on a near constant basis. I've always had mouth ulcers, but no so frequently. For the past year there might have been only two weeks ulcer free.

Naturally, the ulcers scare me. I read it could be a sign of HIV. I got tested four times with a rapid oral swab and once with a rapid test that used whole blood (insti). All were negative and the blood test was taken 10 months past exposure, but up to 3 years past a risky endeavor.

Could this all be residual from mono? Should I be worried about something else? Please help!

[RJSenses]

I have both mouth ulcers and geographic tongue. I also have numerous other symptoms but when I was younger I was right where you have been recently. I developed rectal/vaginal ulcers and doctors thought herpes however. Then rashes diagnosed as psoriasis but biopsy was negative. Oral ulcers were canker sores. Now fast-forward years and I now have doctors looking into Behcet's. Lupus and other autoimmune or autoinflammatory conditions cause these problems. Have your ANA tested first and know if it's negative you can still have many of these that either haven't produced a positive yet, are seronegative or belong to classes such as Behcet's which have no real lab markers. You could simply have negative effects from the mono though. I hear they can last for quite awhile. Report symptoms to your doctor even if you think they sound crazy. Some things with these group of diseases can get weird. ]

[mkh9]

Glad to help.

[Boss12345]

Thanks so much for your advice.

[mkh9]

Just confirm you had it since the mono spot test has false positives and negatives. If you want to know for sure you were exposed to it then you will know for sure. Otherwise, you don't have to since all your symptoms are typical.
mkh9

[Boss12345]

What can it tell me now? I feel a lot better, just the mouth problems.

[mkh9]

I think since you haven't had the antibody test done with one I mentioned above it would be good to get it done.
mkh9

[mkh9]

Well, then you fit the age group for mono too. Usually teenagers but you are young enough to not have been exposed before.
mkh9

[Boss12345]

I was 24 at the time

[mkh9]

Usually the WBC can drop with a viral infection but the Lymphocytes go up these are atypical looking to the technologist. That along with your symptoms sounds like mono. There are other strep that can cause a sore throat with pus, fever, and swollen lymph nodes but they usually don't last as long as yours. Or you would so sick if you had them that you would have gone in to the doctor right away. Oh, ok. I just saw your LY (lymphocytes) Leukocytes wouldn't be abreviated that way. It looks like mono overall. Maybe you just weren't exposed to it and you were at that point. May I ask your age?
mkh9

[Boss12345]

I looked again and the column titled LY and LY# were both high

[Boss12345]

I meant to say my WBC dropped. Are they the same thing?

[Boss12345]

The thing  is, my total lymphocyte levels dropped when I first got sick, then rebounded. Could it still be mono?

[Boss12345]

Thanks. We did a strep, it was negative. My symptoms were common mono symptoms, just not sure where I got it.

The HIV thing is very unlikely due to there not really being any risky exposures. My exposures multiplied times the accuracy of the tests I took puts me at about 1 in 2,000,000 chance.

It's just weird that all of this came down on me at one time. Now I want to know what it is, but the doctor seems confident it was mono

[mkh9]

The mono spot test is very inaccurate you can have a false positive for many reasons. Such as hepatitis, Rubella, Lupus and other autoimmune disease, Lyme, Toxoplasmosis. And, I'm sure there are others but these are the most common. They should have done a Strep test on you as well.

You should have the EBV serology test that has the antibody tests for immuoglobulins IgM and IgG. Now that you have had it you will only come up positive for IgG. To know if you have had past infection the tests has Viral Capsid antgen , Early antigen, and EBV nuclear antibodies. If you had a past infection the IgG for  EB Nuclear antibodies will be positive and the EB viral capsid IgG antibodies will be positive. Since most adults have been exposed to EBV, so you could have been exposed in the distant past or last year (when you had your symptoms). The usual symptoms are sore throat, swollen lymph nodes under the throat area, high fever, and around half have swollen spleen. Some have swollen liver as well.If you had a complete blood count as well there will be higher number than usual of lymphocytes and they will look atypical.

Here is a website from the CDC that talks about EBV and the testing.

http://www.cdc.gov/epstein-barr/laboratory-testing.html

I have a Geographic tongue too. It is genetic. Don't worry about it. The doctors like to look at them. LOL. The canker sores are harmless but can be painful.  You may have had more of them due to stressing.

mkh9

[Boss12345]

Would syphilis be a concern? My tongue has flat bald spots on it with no borders but the docs say they think it is geographic tongue. Would mono effect my whole mouth this way?

[Boss12345]

Well I know they are canker sores, I've had them all my life. It's just now they are more frequent and last longer. I have been to two ENTs and they said they are canker sores. It's weird that I have that and what they call Geographic Tongue.

I'm just wondering if I was misdiagnosed with mono when it could have been something else. How accurate is the mono spot test?

[mkh9]

Hi and sorry you have these ulcers. You don't have to worry about HIV. You have been tested for a long time and I don't think you are at risk now. There is some evidence of ulcers with chronic EBV. But I think these are canker sores. They can be caused by a variety of things. First does the description look like this "single or multiple round/oval ulcers that are shallow, regular margin not irregular, with a yellow gray base. They are never preceded by vesicles and are < 1 /cm in diameter? And, you get at least 3 attacks in past 3 years not in the same sites? And are painful and heal spontaneously? This is a description of Aphthous stomatiis or the common name canker sores. The things that can cause them are:
1. dietary deficiency such as low Iron, B12 or folic acid
2 Allergies such as a wheat allergy
3. 40% are genetic
4. can be caused by a streptoccous (normal strep that happens to cause these) if intersted I can find the article and tell you which species.
5. other causes Herpes simplex
6. Stress

So you can try rinsing with warm salt water a few times a day. This would help if it is strep. If it is genetic you can't do much. You can get your iron, folic acid and B12 tested to see if you are low. Try to stop stressing about HIV and other things and you will probably get less of them.  

I will say regarding the HIV testing is that I don't think the rapid tests are as sensitive as the PCR and the antibody tests. If you want to put this to rest get the antibody screen and a PCR test and then forget about it. I think even though the rapid tests are not as sensitive after as many as you have had I still wouldn't worry. But I'm saying to finalize and put your mind at ease you could do the antibody tests and PCR. I don't think you have it.

mkh9