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ARC without HIV positive testing
Dear Doctor,
I am a 37-year-old man, and 6,5 months ago I had a risky exposure (unprotected sexual contact) with a woman with unknown HIV status. 6,5 weeks after this exposure, I had several symptoms such as fever for a week, sore throat, one swollen lymph node under neck and severe muscle pain. At the time of my illness and also 3 months and 6 months after the contact I was tested negative for HIV with Ag+Ab testing.
But when my symptoms began I suffered from tongue problems (black hairy tongue which lasted for 1 week) and since that time I am suffering other tongue problems which are : light-brown coating on my tongue and white points/patches along the side of my tongue. In addition, I have a never-healing athlete's foot for 3 months and swallowing problems and chest pain.
This week I have again been extensively investigated in the hospital with biopsies and endoscopies and diagnosed with leukoplakia on my tongue and what much worse is PCP (Pneumocystis pneumonia) which causes my swallowing problems and chest pain. My doctors said that the leukoplakia I have on my tongue is resembling oral hairly leukoplakia and PCP almost always occur with HIV positive persons. They have said that both of these symptoms/illnesses are ARC although I still had a negative HIV test which they had no explanation for. So, in short, they have diagnosed me with AIDS.
But, I don't understand why I still test negative with HIV tests. So far I had several HIV Ag+Ab (Ab for HIV1&2, Ag for HIV-1) test and one PCR test for HIV1 which came back negative. Almost all guidelines say that the maximum window period is 3 months and may be extended to 6 months if you have a kind of autoimmune disease which I am sure I didn't have.
At the moment I have no idea what I should do and how I should move.
Can you please help me and suggest anything you may think about?
Thank you very much in advance.
I am a 37-year-old man, and 6,5 months ago I had a risky exposure (unprotected sexual contact) with a woman with unknown HIV status. 6,5 weeks after this exposure, I had several symptoms such as fever for a week, sore throat, one swollen lymph node under neck and severe muscle pain. At the time of my illness and also 3 months and 6 months after the contact I was tested negative for HIV with Ag+Ab testing.
But when my symptoms began I suffered from tongue problems (black hairy tongue which lasted for 1 week) and since that time I am suffering other tongue problems which are : light-brown coating on my tongue and white points/patches along the side of my tongue. In addition, I have a never-healing athlete's foot for 3 months and swallowing problems and chest pain.
This week I have again been extensively investigated in the hospital with biopsies and endoscopies and diagnosed with leukoplakia on my tongue and what much worse is PCP (Pneumocystis pneumonia) which causes my swallowing problems and chest pain. My doctors said that the leukoplakia I have on my tongue is resembling oral hairly leukoplakia and PCP almost always occur with HIV positive persons. They have said that both of these symptoms/illnesses are ARC although I still had a negative HIV test which they had no explanation for. So, in short, they have diagnosed me with AIDS.
But, I don't understand why I still test negative with HIV tests. So far I had several HIV Ag+Ab (Ab for HIV1&2, Ag for HIV-1) test and one PCR test for HIV1 which came back negative. Almost all guidelines say that the maximum window period is 3 months and may be extended to 6 months if you have a kind of autoimmune disease which I am sure I didn't have.
At the moment I have no idea what I should do and how I should move.
Can you please help me and suggest anything you may think about?
Thank you very much in advance.
I agree Dr.Handsfield' comments. He does not have PCP and HIV, just scares other people!
Please do not put thest confused information in this website!
Please do not put thest confused information in this website!
MEDICAL PROFESSIONAL
Why are you arguing? My comments are meant to be reassuring! Don't you view it as good news that you probably don't have HIV?
Leukoplakia is not evidence of AIDS or HIV; it occurs all the time in immunologically healthy people. And there is no chance you had PCP, which is rapidly fatal if not properly treated, usually in the hospital with IV antibiotics.
Any further comments will be deleted without reply, unless and until you return to tell us either that HIV was confirmed or, much more likely, what the actual diagnosis is.
Leukoplakia is not evidence of AIDS or HIV; it occurs all the time in immunologically healthy people. And there is no chance you had PCP, which is rapidly fatal if not properly treated, usually in the hospital with IV antibiotics.
Any further comments will be deleted without reply, unless and until you return to tell us either that HIV was confirmed or, much more likely, what the actual diagnosis is.
Dear Dr. Handsfield,
I wish you were right. I am already going through a very difficult stage in my life and I swear I don't know what to do at the moment. After being diagnosed with PCP and leukoplakia (PCP is what I heard, I can not go to the doctors and say that I doubt about their diagnosis, even if I do, they won't care), I have now an appointment with ENT-specialist (the first examination and diagnosis were with infectious diseases specialist) and will request further examination and re-testing etc. That's why I wrote that I really don't know what I have (PCP or esophageal candidiasis), but one thing is for sure the antibiotics therapy didn't make it any better.
I know that in US, people are diagnosed with AIDS when they reach a CD4 level of 200 and have a positive HIV test. But, here it depends on getting opportunistic infections. Of course, the negative HIV test is still a question mark. On the other hand, no lab testing has 100% sensitivity.
Anyway, I'll go on with working with my doctors as you said and if/when I get another diagnosis I'll let you know. Yet, I ensure you that I am not exaggerating anything.
Thank you for your comments.
I wish you were right. I am already going through a very difficult stage in my life and I swear I don't know what to do at the moment. After being diagnosed with PCP and leukoplakia (PCP is what I heard, I can not go to the doctors and say that I doubt about their diagnosis, even if I do, they won't care), I have now an appointment with ENT-specialist (the first examination and diagnosis were with infectious diseases specialist) and will request further examination and re-testing etc. That's why I wrote that I really don't know what I have (PCP or esophageal candidiasis), but one thing is for sure the antibiotics therapy didn't make it any better.
I know that in US, people are diagnosed with AIDS when they reach a CD4 level of 200 and have a positive HIV test. But, here it depends on getting opportunistic infections. Of course, the negative HIV test is still a question mark. On the other hand, no lab testing has 100% sensitivity.
Anyway, I'll go on with working with my doctors as you said and if/when I get another diagnosis I'll let you know. Yet, I ensure you that I am not exaggerating anything.
Thank you for your comments.
MEDICAL PROFESSIONAL
With this comment, now more than ever I believe you do not have HIV or AIDS, and probably nothing you caught during your sexual exposure 6 months ago. It would be interesting to know where you are, if you care to say. In any case, please return to the fourm when you know the final outcome.
Dear Dr. Handsfield,
Antibiotics therapy which I had was before the diagnosis. When I had throat (swallowing) problems and chest pain for the fist time, my doctor diagnosed me with pnemonia and prescribed normal antibiotics and those didn't help.
Regarding the later diagnosis, I really don't know what kind of disease is that; PCP or esophageal candidiasis. I live in Europe and it takes a long time to take a test, to see a specialist, to get diagnosed etc. We don't have private clinics here. I have this month again an appointement with a specialist. I'll try to learn more, and get tested with different options. At the moment, I don't have more to say.
Antibiotics therapy which I had was before the diagnosis. When I had throat (swallowing) problems and chest pain for the fist time, my doctor diagnosed me with pnemonia and prescribed normal antibiotics and those didn't help.
Regarding the later diagnosis, I really don't know what kind of disease is that; PCP or esophageal candidiasis. I live in Europe and it takes a long time to take a test, to see a specialist, to get diagnosed etc. We don't have private clinics here. I have this month again an appointement with a specialist. I'll try to learn more, and get tested with different options. At the moment, I don't have more to say.
I am sorry to hear about. As you know, everybody will meet undesired thing in the life, please encourage yourself to face it. So many people support you, including your family, friends and us.
I suggest you do the following three things to clearify
1, Definitely request your doctor to check your CD4/CD8 counts. According to CDC guidline, defination for AIDS need CD4 below 200 counts. But you do not have these information.
2, Ask your doctor to run Western blot to confirm the diagnosis. This also is CDC guidline. If you exposured 5 or 6 months ago, no antibody shown is unlikely possible. Antibody will detect any subtype HIV(CDC, maybe slightly different in antibody binding affinity). Unless you had long time exposure before, seriously damaged your immu. system or had an advanced HIV. But according to your talk, it is not.
3, I am very doubted your diagnosis of PCP as Dr. Handsfield mentioned.
Please update your situation, we care about you.
I suggest you do the following three things to clearify
1, Definitely request your doctor to check your CD4/CD8 counts. According to CDC guidline, defination for AIDS need CD4 below 200 counts. But you do not have these information.
2, Ask your doctor to run Western blot to confirm the diagnosis. This also is CDC guidline. If you exposured 5 or 6 months ago, no antibody shown is unlikely possible. Antibody will detect any subtype HIV(CDC, maybe slightly different in antibody binding affinity). Unless you had long time exposure before, seriously damaged your immu. system or had an advanced HIV. But according to your talk, it is not.
3, I am very doubted your diagnosis of PCP as Dr. Handsfield mentioned.
Please update your situation, we care about you.
MEDICAL PROFESSIONAL
If you had PCP, you would have been given potent antibiotics to treat it. You also would have been given antifungal antibiotic if you had esophageal candidiasis.
With this additional information, I am skeptical you have any of these diagnoses or that you have immunodeficiency at all. It is also not likely any doctor would diagnos AIDS without first doing a CD4 count. My guess is that you are exaggerating what the doctors said or you misunderstood. In any case, I look forward to hearing more definitive diagnostic information if and when you have it.
With this additional information, I am skeptical you have any of these diagnoses or that you have immunodeficiency at all. It is also not likely any doctor would diagnos AIDS without first doing a CD4 count. My guess is that you are exaggerating what the doctors said or you misunderstood. In any case, I look forward to hearing more definitive diagnostic information if and when you have it.
Sorry for being rude but I thought that test always outweigh symptoms???
Dear Dr. Handsfield,
Thank you for your reply and I'll follow your advises and let you know if a different diagnosis is made.
Just to mention; it is not possible to find the person with whom I had an exposure. If it was, I would have done it earlier. Besides, it is the diagnosis of the doctors at the hospital, nevertheless I really don't know whether I have PCP or esophageal candidiasis but what I know is that it was not a solution to use antibiotics for it, as I already had an antibiotics therapy for 10 days and it didn't help for it. Re the CD4 count; I don't have that test/assay yet.
And my exposure history is that only: one time unprotected heterosexual contact..
Thank you for your reply and I'll follow your advises and let you know if a different diagnosis is made.
Just to mention; it is not possible to find the person with whom I had an exposure. If it was, I would have done it earlier. Besides, it is the diagnosis of the doctors at the hospital, nevertheless I really don't know whether I have PCP or esophageal candidiasis but what I know is that it was not a solution to use antibiotics for it, as I already had an antibiotics therapy for 10 days and it didn't help for it. Re the CD4 count; I don't have that test/assay yet.
And my exposure history is that only: one time unprotected heterosexual contact..
MEDICAL PROFESSIONAL
I would like to help, but really cannot. All I can do is reiterate that it is exceedingly uncommon to have HIV more than a few weeks without positive blood tests. At one time, AIDS was diagnosed clinically, regardless of HIV test result -- and by that standard, it seems you have AIDS, especially if the diagnosis of pneumocystis pneumonia (PCP) is correct (but see comment below). Today, however, AIDS usually is not diagnosed unless and until an HIV infection is diagnosed as the cause of the immune dysfunction. So as far as I am concerned, the diagnosis of AIDS is questionable at best. It would be helpful to know some other test results, such as your CD4 lymphocyte count .
So you clearly have an immune deficiency condition that suggest AIDS, but I doubt that HIV is the cause. (Your very low risk for HIV, if your exposure history is correct, also suggests something else as the underlying problem.) In any case, it sounds like you have knowledgeable doctor(s) who probably know as much or more about these things as I do. And this forum emphasizes HIV prevention and initial diagnosis; we do not attempt to answer more complex diagnostic questions or management.
A side question: Are you certain about the diagnosis of pneumocystis pneumonia (PCP)? The symptoms you describe are not those of PCP, which causes shortness of breath, often wheezing and cough, and often requires oxygen treatment. Chest pain and difficulty swallowing suggest esophageal candidiasis. That also is an indicator of immune deficiency and suggests AIDS, so it doesn't make much difference in my overall assessment.
The only other thing I can suggest is to attempt to locate your sex partner from a few months ago and ask her to be tested. My bet is that she doesn't have HIV -- but if she does, that would increase the chance that you have it despite the negative tests.
Bottom line: I'm sorry I cannot solve the mystery. Continue to work with your doctors. If an infectious diseases specialist is not involved in your care, you should ask for such a consultation. And please return to the forum to let us know if and when a definite explanation is available, whether you turn out to have HIV after all or something else.
Good luck to you-- HHH, MD
So you clearly have an immune deficiency condition that suggest AIDS, but I doubt that HIV is the cause. (Your very low risk for HIV, if your exposure history is correct, also suggests something else as the underlying problem.) In any case, it sounds like you have knowledgeable doctor(s) who probably know as much or more about these things as I do. And this forum emphasizes HIV prevention and initial diagnosis; we do not attempt to answer more complex diagnostic questions or management.
A side question: Are you certain about the diagnosis of pneumocystis pneumonia (PCP)? The symptoms you describe are not those of PCP, which causes shortness of breath, often wheezing and cough, and often requires oxygen treatment. Chest pain and difficulty swallowing suggest esophageal candidiasis. That also is an indicator of immune deficiency and suggests AIDS, so it doesn't make much difference in my overall assessment.
The only other thing I can suggest is to attempt to locate your sex partner from a few months ago and ask her to be tested. My bet is that she doesn't have HIV -- but if she does, that would increase the chance that you have it despite the negative tests.
Bottom line: I'm sorry I cannot solve the mystery. Continue to work with your doctors. If an infectious diseases specialist is not involved in your care, you should ask for such a consultation. And please return to the forum to let us know if and when a definite explanation is available, whether you turn out to have HIV after all or something else.
Good luck to you-- HHH, MD
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