I will apologize ahead of time as I have a feeling you will not like what I have to say to you. 1st off please understand my words are mixed with frustration and confusion. Regardless I still respect everything that you have done thru-out the years and I have a feeling will continue for many, many more.
Now how dare you Dr. Bob? How do you call yourself and HIV specialist or even an immunologist and yet continue to provide inaccurate information to people that write to you looking for an honest opinion to their current status. I do understand that being that your answering people thru email and not actually face to face it is hard to make a complete and accurate diagnosis. But how dare you tell some of these people (including myself) after they had a clear and confirmed exposure to HIV and since then have experienced either ARS or even after several years continue to have declining health. How do you tell these people that HIV is not their problem? What makes you so sure that HIV is not their problem? I myself have experienced HIV associated lymphadenopathy after a risky exposure yet tested out to 6 month and still negative. But tell me doctor what else can cause full body, non-painfull lymphadenopathy all over ur body after a risky exposure. In case you havent looked at the list of possible infections all of them seem impossible when just 1 or 2 weeks prior to getting symptoms our only exposure was a sexual one. So tell me, do you think I am mentally causing all my glands in my body to become swollen? Is my mind really that strong? Are you going to tell me to seek mental help? Why not tell me the truth. Tell my why doctors now in days are so lazy to get their heads out of their butts and think outside of the box and realize that if someone had a clear exposure, then all the sudden they get all the symptoms such as white tongue, fatigue, rash, headaches, swollen glands, and these symptoms continue past the time a normal cold/flu would last. However all the doctors I have seen look only at my test and due to all being negative they continue to ignore all my real symptoms. Worst of all they cannot give me an answer to why after never experiencing a swollen node, now I have them all over my body. Thats the scary thing. There was a time when all this started that I was so scared of testing poz and now its gotten to the point were the only thing that makes sense is HIV. And worst of all its a strand of HIV that the current US test are not even picking up. Yes I know it sounds crazy right? Thats impossible you say. Well then how did we go from having 1 strain of HIV at the start of this epidemic to now having close to 20 different strains. And worst of all these strains are from different places of the world. So dont we now live in a world were people travel all the time and some of these people could have possibly been infected from one of these strains and are just not yet being recognized by our current test? Is that so hard to believe? After reading so many post from this site and many others from people with real symptoms, I can only imagine how many of them are going undiagnosed.
Now youre always advising everyone to read the post for previously answered questions. Well guess what I read the previous posts and not just yours but the ones from some of the other doctors that answer questions on this site. Now why is it that when someone would post a similar question to Dr. Bruce Dezube about unexplained lymphadenopathy after a risky exposure even with negative test results past the window period he doesnt tell them it cannot be HIV, no way no how. But instead advises to have a biopsy on the lymph node. Is it because he just sees enough of these patients with unexplained lymphadenopathy n negative test to realize that the test are just not picking up HIV on everyone that is infected. Again I ask you, as a doctor what else could cause lymphadenopathy after a risky exposure, maybe even to someone that is known to be HIV+. What would be your next step as a doctor. Would you do what all the doctors have done in my case and send me home with all my negative test results but still suffering from PGL and maybe hope I dont die from an undiagnosed HIV/AIDS OI because you wouldnt second guess an HIV test. I have tried to be as proactive as possible in trying to catch this disease and have had a cd4 done every month for the past 3 months. Now keep in mind my exposure was in Nov 09.
March 2010 cd4 837, cd4% 39, cd8 544 cd8% 26, cd4/cd8 ratio 1.50
April 2010 cd4 824, cd4% 42, cd8 570 cd8% 27, cd4/cd8 ratio 1.50
May 2010 cd4 1003 cd4% 38, cd8 729 cd8% 28, cd4/cd8 ratio 1.37
Do you see that my cd8 is currently elevated and the cd4/cd8 is on the really low side of normal. Doesnt a high CD8 mean our body is fighting an infection? And my cd4/cd8 is close to being inverted. You see Dr. Bob here you have in front of you how the HIV test that you and many other doctors worship are not as accurate or specific as believed. There is something out there. Yet no one seems to pay attention to those of us with real HIV symptoms because of the result of a simple test. So what do we do. Honestly should we just wait till PCP hits us and then docs might think ok this could be an undiagnosed HIV infection. I want know because I have a 6yr old that I would like to make future plans for without having to worry about how much time I have remaining. And if HIV is our problem we should not be denied the advantage of getting the same meds that are currently available to those that have tested positive.
In conclusion Dr. Bob I respect you, please dont take this as an assault as again I have seen 5 HIV specialist. So this is in general for all doctors that are too afraid to try 2nd guessing. Now I offer again I am willing to go to San Francisco and have you inspect my swollen glands so you can tell me what ur honest opinion. I am not asking for charity as I have very good health insurance that will cover me for seeing a specialist, most specially the renown Dr. Bob. And please dont insult me by telling me to seek mental help because I am far from needing one. Patiently waiting ur reply.
First of all, had you not begun your rant with an ernest apology and the very accurate self-assessment "my words are mixed with frustration and confusion," I would have deleted your post, as I've already responded to your concerns in the past and I have not changed my assessment.
Next, if you have so little respect for my medical expertise, why are you contacting me again? You stated that I would not like what you had to say. Although I'm not elated when anxious, frustrated wrecks attack my credibility, it really reflects much more on the writer than me. You have chosen not to accept my analysis of your problem. Fine. That is your prerogative. Interestingly you report you've seen five other HIV specialists who have come to the exact same conclusions and assessment. You have chosen not to accept their expertise as well. You feel we are "lazy" and have our "heads up our butts." Don't you find it rather remarkable that you've managed to hit now six HIV specialists in a row who are so dreadfully incompetent?
Now it's my turn to say a few things that you won't like. And please note these comments come without an apology.
You are HIV negative whether or not you choose to accept that reality.
There was absolutely no indication for obtaining T-cell subset analyses. Your three sets of tests are all normal by the way. (I am a board certified clinical immunologist. You are not.)
I will not comment on out-of-context advice given by other physicians. Such advice, I should add, was not directed at your specific situation.
If indeed you had significant unexplained lymphadenopathy (not self-diagnosed swollen glands), a lymph node biopsy may be clinically indicated to rule out conditions such as malignancy (lymphoma, etc.). However, since you've been evaluated by at least five HIV specialists, I tend to doubt you have clinically significant lymphadenopathy.
It's unfortunate your sexual activity placed you at risk for HIV, as it obviously has had a profound effect on your psyche as demonstrated by such comments as "there was a time when all this started that I was so scared of testing poz and now its gotten to the point where the only thing that makes sense is HIV" and ". . . we should not be denied the advantage of getting the same meds that are currently available to those that have tested positive." WOWZA! And you still insist you don't need a shrink. Trying to obtain antiretrovirals when you have overwhelming and irrefutable evidence you are HIV negative plus the unanimous opinion of six HIV specialist physicians that you are not HIV infected speaks volumes about the depth of your psychopathology.
As I have told you before, should you fly to San Francisco I would have nothing to offer you, as I am not a psychiatrist and you do not have HIV disease. I have given you the benefit of my expertise, despite your insults, and offered you the path back to both physical and psychological well-being. Whether you choose to follow that path is totally up to you.
Good luck. I think you'll need it. Finally, apology accepted.
lymphadenopathy after risky exposure = HIV Mar 17, 2010
Dear Dr. Bob
I write to you again (100% hiv infected 2010) because I have a problem. So I know you are a busy man. And I really do think u deserve so much for all the great work that u always provide to people living with HIV and WW regarding there questions and understanding. Well I was reading previous post on thebody.com and type in search = Lymphadenopathy. So I was amazed at how many people have written in describing their symptoms that included swollen/tender lymph nodes. I was also amazed that a lot of them continued to test negative on there AB and other more specific HIV test out to 1yr after exposure. But I was more amazed at the fact that you would advised them that HIV is not there problem, no way - no how! However Dr. Bob while I greatly respect all that u do I somehow think ur wrong on some of these peoples issues. Lets start off by stating that HIV was once called LAV because it was a disease that caused Lymphadenopathy there for the name LAV came around. Then it was changed to HIV because of the 2 docs from the US and France that had the little dispute about who discovered the disease. Ok so we can agree on that much. Now if Lymphadenopathy is associated with primary HIV infection and a lot of these people including myself have experienced this since our last risky exposure whether it be occupational needle stick, condom breakage or just not wearing protection during sex but the test still continue to show negative.
Would it be ok to say that HIV test are not as accurate or as specific as we believed to be. I think when it comes to a lot of these online forums we come to look for answers and to be made to feel better by being advised that after testing out of the 3 month or 6 month or even 1yr period that HIV is not the problem. Then what else could explain such a coincidence. I mean in my whole entire life that has been a short 28yrs long I had never experienced 1 swollen lymph node. I didnt even know we had them to begin with. And I have been sexually active since I was 13yrs old and have had plenty of women in my life with which I have gone both protected and unprotected during sex. However this last time I made sure that I always wore protection. I was very careful when pulling out to make sure the condom was always on. But unfortunately the condom broke and I wasnt aware that it was ripped or how long it was ripped for and now I fear that I am infected with HIV even after all the negatives that I have received for the past 16wks. I have been to 1 GP and 2 HIV specialist and somehow they all feel my lymph nodes and decide that since there is no lymph node that is bigger than a marble or even a bit smaller than that, that I do not have swollen lymph nodes or HIV. I find this hard to accept and also feel like I have been misdiagnosed. I feel these uncomfortable feeling on both side of my abdominal area, my back, my forearms, back of the knees, back of elbows, groin area while my lymph nodes may not be swollen in size they are very palpable to the touch in all areas of my body, lately more so on my abdominal area. And I am loosing weight while eating nothing but mcdonalds or other fast food. How is that when combined with occasional night sweats and white tongue not diagnosed as HIV only because no test has been able to pick it up. Even a ultra sensitive RT HIV RNA test was not able to detect HIV @ 48 copies, but on this website there is a story about a person that was infected and was positive on AB test but always undetectable on viral load test. Then someone thought of using a bdna test for viral load and they were able to pick up a viral load due to the person having a non - B strain. So you see how there is a lot to this disease that is not yet understood as shown by test that only detects antibodies to HIV disease and not the virus itself. And even the test we do have to detect the virus cant be used as diagnostic tools. So what will happen when 5yrs from now me and other who have similar stories with negative HIV AB test, PCR test, NAAT test all the sudden show up to emergency rooms with signs and symptoms of AIDS? I know there is nothing you can do aside from what ur already doing for us. But I am still sure that I am infected or there is something else out there or also either HIV is hiding in the lymph nodes and not circulating in the blood including no AB. Or there is a new strain of HIV that is not yet discovered or the current HIV AB are just not as specific and accurate as we want to believe they can be. I mean even now some docs say 3, 6/months or even 1yr for testing. I my self as much as it would suck and change my whole life, would rather know now that I have been recently infected then wait till my immune system is destroyed, but how can I do that if all my AB test are negative and even the test taken by the person that I had the exposure with tested negative. If a lymph node biopsy is to be performed would that be able to locate HIV? I have recently ordered an HIV bdna even after my doc declined to order the test and also have a cd4 count order as well, results not yet available. Something is going on in my body and it started 7 days after risky incident. Since then I have not been the same physically and my health is less than 100%. I dont know what else to do. I am even willing to go to San Francisco and have u examine me to determine what u think could be causing my lymphadenopathy, so what do u think. I am concerned and I hope u post this and answer as u have to other post that I have sent u. I pray every night that someday either better treatment or less stigma is associate with these disease and that it could be accepted just like other chronic disease. Take care.
Response from Dr. Frascino
You can continue to "believe" whatever you wish; however, your beliefs do not change reality.
You have been to your general practitioner and two HIV specialist physicians. All three have advised you that your lymph nodes are not swollen. However, you "find this hard to accept." What are the odds all three doctors, including two HIV specialists, would be wrong about a simple physical finding???
You have had numerous HIV-antibody tests and an undetectable quantitative ultrasensitive RT HIV RNA. Plus, the person you were exposed to (via broken condom) has tested HIV-antibody negative. However, you refuse to believe all these results as well. That's quite amazing!
HIV, whether you believe it or not, is not your problem. No way. No how. No additional HIV tests are warranted. (Your totally unnecessary HIV bDNA will be undetectable and your equally unnecessary CD4 count will be normal.) Most likely you won't believe these results either. It's painfully obvious to everyone, except you, that your problem is not virologic, but rather psychiatric. You don't have HIV, but you do have a significant medical problem: irrational fear of being HIV infected.
I urge you to see psychiatric help. Flying to San Francisco will not help, as you are not HIV infected and I am not a psychiatrist.