[Question #3925] Follow up to 3829

32 months ago
Dear Dr. Hook,

When I first asked a question I really wished Dr. HH gets that but now I’m really hoping you get this one because of the brilliant interaction with you on my first post with question 3829. This is a continuation of that. After being fed up of testing and changing doctors for 6 months I came here and you said I might have a mono syndrome. Immediately I got tested and got a high antibody for EBV and a equivocal IGG to EBV. You said my results which I posted on the forum for you are in line with a mono syndrome.
Now I got oral issues a painful white tongue. I had taken flucanzole as you suggested for 12 days (100) mg but that didn’t resolve it. It’s worse now. I went to see my doctor again and he wanted to run an HIV test on me AGAIN. He ran three tests a HIV combo - 0.49 non reactive, HIV1 pro viral DNA qualitative- not detected and HIV 2 RT PCR detection - not detected. All 3 tests negative .... thank god. Now, he has ran a couple of HIV tests on me earlier as well which include five  HIV combo tests, 3 RNA PCR tests for HIV 1, one RT PCR for HIV 2 and one western blot .... all these tests have happened in a duration of 6 months and the 3 latest I mentioned happened now more than 7 months post exposure. You will agree that’s a lot of testing ... almost 14 HIV tests... 
my concerns are :
1.) Why are doctors running HIV tests on me again and again ... isn’t that enough testing ? Is thee a chance I might have it and all these 13/14 tests can’t pick it up?
2.) Can EBV/Mono cause oral issues like sores on tongue that hurt and a white tongue?
3.) I’ve had painful glands/ lymph nodes under both my arms since 6 months now .. that is one month after exposure ... can EBV swollen glands last so long ? 
4.) The popliteal gland behind my left knee is also swollen and it hurts .... is that also EBV/ Mono ?
5.) you mentioned no medications are there for EBV/ MONO... what do I need to do then ... in terms of viatmins or supplements ?
6.) With regards to my wife whT precautions 
32 months ago
6.) what precautions do I need to take ?
7.) when will this whole thing resolve. I’m really tired of painful glands, painful tongue.... how long does this EBV/ Mono take to go away?
8.) Is there anything else that could cause this ? Are we missing any other tests? I tested for Lyme and adenovirus that came negative.
9.) What according to you should I do ? What is the best course of action for me given my symptoms and situation. 

Dr. Hook while I seek your help and guidance ... I must mention that if it is rather EBV/Mono syndrome then none of my doctors could diagnose me and it was only you who suggested that I get tested for EBV, which is amazing because my doctors could examine me and have my previous medical history records whereas you only have access to the information I give you... I find that amazing. If you want to confirm that it is EBV/ Mono and nothing else .... is there a way ... I’m hoping you got to see my reports I had posted on this forum for you. 
H. Hunter Handsfield, MD
H. Hunter Handsfield, MD
32 months ago
Welcome back to the forum, but I'm sorry you found it necessary. You flatter me with your confidence in my opinion. However, if you're expecting anything different compared with Dr. Hook's comments and advice, you've come to the wrong place. We never disagree significantly with one another, and I read your discussion with him. I agree with everything he said.

As Dr. Hook said, your symptoms are not due to any STD or any infection acquired from a sex partner. For sure you do not have HIV, and 14 tests for it is ridiculous:  please don't spend any more money or emotional energy worrying about or testing for HIV. Same for any and all other STDs. With those preliminary comments, brief replies to your specific questions:

1) My guess is your doctors are doing additional HIV tests primarily to reassure you, not because they suspect you actually have HIV. You should ask them. As noted above, I see no need.

2) EBV or other forms of mono might cause this, but my guess is your oral sores are something else entirely. They aren't due to any STD.

3) Neither EBV, other mono, nor HIV is likely to cause lymph node enlargements only in one localized area, such as under one arm.

4) I'm not aware of a "popliteal gland". If there is a single palpable lymph node there, it doesn't sound important and perhaps unrelated to your other symptoms. Posterior popliteal cysts are pretty common; if your doctors think this is possible, ask for referral to an orthopedist.

5) For sure you do not have active EBV and probably no active infection with any mono-related virus. General nutrition is fine. Many (most? all?) your symptoms are consistent with the physical manifestations of anxiety, stress, depression, or other psychological problem. I suggest discussing these possibilities with your doctor(s).

6) You have nothing sexually transmissible. You need take no precautions with your wife sexually or in household contact.

7) I can't say when your symptoms might resolve. It probably depends mostly by the cause, especially if my guess about a psychological origin is correct.

8) I have no other ideas about likely causes. This forum is limited to STDs, and clearly you have no STD.

9) I have no suggestions not already made above.

I am also confident that personal examination/evaluation by me or Dr. Hook would not change the opinions and advice we have given. These comments probably are not what you were hoping to hear but I hope you find them helpful. Let me know if anything isn't clear (but please do not repeat any questions/issues already addressed above or by Dr. Hook).

32 months ago
Dear Dr. HH

First of all a big big thank you. I’m so happy to hear from you. I’m a big fan of your work... I’ve been a follower of your comments since Medhelp. Not only the work you do is amazing but your style is great. Really .... I am happy to receive a response from you.

Given that I’m your long time follower I didn’t expect any different response ... neither am I going to repeat the same questions. I know what you and Dr. Hook feel about repitive anxious questions. Dr. HH, I have picked up something from that encounter ... I am confident because I’ve never had these issues all come together. I’m not doing well and I can feel it. The 14 HIV tests were actually done by doctors and were never suggested by me and I agree that they are excessive. 

Im sorry if I was unclear regarding swollen glands ... I have painful swollen glands under both my arms and behind my left knee... I don’t know what that gland is called ... I though it was called the popliteal gland.... I guess I’m wrong. So I have three swollen places ... under both arms and behind left knee ..... all sometimes hurt and are uncomfortable. I have sores at the back of my tongue and it’s white .. it pains.  One thing I must mention and bring to your notice us I got an equivocal IGG to the early antigen test for EBV. Does this show it’s a recent infection. I’m going to copy my EBV results here just so that you can see them and tell me if I’ve gone through a recent infection which is now resolving. I guess there is nothing else then. Please let me know if you could see these and if you could what’s your opinion on my results.

32 months ago
Please see these and let me know if you think it can be EBV troubling me ..... Thank you sir. 
H. Hunter Handsfield, MD
H. Hunter Handsfield, MD
32 months ago
I have already said it is unlikely EBV is the problem. If you continue to wish to pursue that possibility, you should request referral for consultation with an infectious diseases expert. But I am very doubtful.

Onset after a particular sexual exposure is very poor evidence of a causal effect. Look at it objectively:  Let's say you're in a population of 10 million people (I don't know where you are) and during any month let's guess that 1000 of them develop an unexplained illness with some or most of your symptoms. Let's also assume that during the few weeks before onset of those symptoms, 100,000 in the population had new sexual exposures. (Wild guesses at the numbers, but you get the idea.) Obviously in most cases, the two events will merely be a coincidence, i.e. the illness not caused by the sexual event.

The human mind tends to link sequential events in a causal fashion. But in addition to the sexual exposure, in the weeks before onset of your symptoms, you also had many nonsexual personal contacts with friends, co-workers, or casual contacts on the street. You also could have been exposed to environmental toxins or infections without your knowledge. There is no particular reason to link your symptoms with the sexual event than with all these other possibilities.

I saw your EBV test results in the previous discussion with Dr. Hook. As I said above, I agree with all he said:  re-read his comments about those test results.

This website is not intended to diagnose any user's medical condition. I have no further comments about the likely causes of your problems. I have given you my best and only suggestions about it and I remain confident you have no STD nor any other infection from the sexual exposure you are concerned about.

32 months ago
Hi Dr. HH

I guess there is no other option left ... one thing I am certain about is that my under arm and oral symptoms are not anxiety for sure. I guess the cause may be something else but these symptoms exist. I see no point in repeating questions. 

Before ending this post I will like to take one anxiety driven reassurance from you though. Given the one HIV 1 pro viral DNA, 3 HIV 1 RNA PCR’s, 5 CMIA abbott architect AB/Ag tests, 2 RT PCR for HIV2 and one western blot for HIV1 and2..... all negative and all conducted from 10 days to 7 months post exposure ....... whatever may be causing my symptoms ... can one thing be certain it is not HIV under any and all circumstances ...... have you heard of anyone or know anyone who did these many tests over 7 months and then their results changed without any new exposure .... I can be 100% of my HIV negative status right ?

Dr.HH ... thank you sir. It’s an honour to have interacted with you .... hope you enjoy Hawaii... I guess you spend a lot of time there now and not in Seattle .... have a great day sir .... I won’t come back with repetitive questions about this exposure. BYE
H. Hunter Handsfield, MD
H. Hunter Handsfield, MD
32 months ago
"...can one thing be certain it is not HIV under any and all circumstances?" YES!

"...have you heard of anyone or know anyone who did these many tests over 7 months and then their results changed without any new exposure"? NO. THIS IS IMPOSSIBLE.

"I can be 100% of my HIV negative status right ?"  YES!

That concludes this thread. Please note that repeated questions on the same topic are strongly discouraged; and you can be sure that asking again, no matter what new information you are likely to have or other questions that come to mine, our opinions and advice will not change. I do hope the discussions have been useful.