What could it be?!

[whatcoulditbe1981]

Dear Doctors,

My girlfriend has a horrible swelling of the lymph nodes in her neck (more on one side) that started in August (after a trip to Bermuda), and has gone up and down in swelling.  About two weeks ago it got severely worse, and after some blood tests, she has a wbc number of 1.8. Her neck is so painful she can't even touch it.

She has been to three doctors who tested for mono, lyme, HIV, CMV, toxoplasmosis, full std panel, etc.  All negative.

He suggests next testing for HIV PC (or TC?), not sure if I heard him correctly, or what that even is.

She's not experiencing much for fevers - there may have just been one night when she had chills.  She's not extremely lethargic or anything like I was when I had CMV about 5 years ago.

Everyone seems stumped.

We are both very STD conscious and have had full panels multiple times while together for almost 3 years.  Neither of us have been with anyone else.

The only risk of exposure that I was worried about was once when I received an ultrasound on my penis for penis trauma while having sex.  The nurse mentioned that someone was in for the same exact thing right before me, and had an ultrasound.  I'm sure they wiped it clean, but I think this couldn't transmit HIV or anything right?  Now I'm a bit worried about that.

I am wondering what HIV PC (or TC?) is, and what we should do next, we are at a loss.

Other info, may be entirely unrelated?  I was diagnosed with Epididymitis, and received antibiotics for this and it helped, but still some pain.  Also, I am beginning to have some definite swelling in lymph nodes on one side of my neck but nothing major - been about 1.5 weeks.  My WBC count was normal when diagnosed with Epididymitis.

With her recent HIV blood test, could she have been sick with the more extreme lymph node swelling as ARS, and still tested negative?

Any suggestions would be super helpful.

[Edward W Hook, MD]

The ultrasound sould not be considered an exposure.

I thnk she needs further evaluation for non-STI casues of her lymph node swelling, as well as to work with her doctor to evaluate this problem.  EWH

[whatcoulditbe1981]

There was the question about whether or not the ultrasound could be considered an exposure, in which case it would be less than 6-8 weeks.

We are engaged, and live together, and make decisions to write with both of our consent.  We were just really hoping for the answers to the questions.

She had an ultrasound of the lymph nodes. The result of that was that they are benign.  There was no CT scan yet.

Thanks!

[Edward W Hook, MD]

Welcome to our Forum.  I'll try to help.  As I understand it you are involved in a monogamous relationship for some time and now are worried because your GF has painful swelling of the lymph nodes of her neck.  Her doctors have begun to evaluate her.  I presume that they agree that the lymph nodes are abnormally swollen.  At this time testing for problems like HIV and other STIs are conclusive and these problems should not concern you.  Personally, based on what you say, I see no need for a HIV PCR test (which tests for the presence of the HIV virus- it is not typically helpful for HIV diagnosis once someone has been infected for more than 6-8 weeks) but have not had the opportunity to speak with, or examine your GF and so respect the doctor's opinion.

Rather it is time to look for other explanation.  You do not mention whether or not she has had a CT scan to look for swelling of other lymph nodes that she might not be aware of or other problems.  There are many problems, some infectious, some not, which can cause the sorts of problems you describe.

Finally, this is an issue for your GF and her doctor(s), not something that you should involve yourself in.  I understand that you do so out of concern for her but this is still something that is most appropriately kept between you and her once STIs have been ruled out and that has been done.  EWH

[whatcoulditbe1981]

also, we have a cat, so i'm wondering about cat scratch disease, but that wouldnt cause wbcs to be low, would it?