Dear dr. Bob, thank you so much for answering my previous questions. Today I got a letter from your foundation along with a personal letter with your signature on it. It was an honor to receive that. Honestly I waited so long since my last email to come back here with a big WooHoo but I cant. I had couple of more standard and rapid hiv 1/2 test out to 6 months (more than 26 weeks) post exposure all negative but I still have symptoms and feel like I have it most of the times. The followings are my symptoms after three month test. Since my last email I had headache for several weeks and then stomach problem (high acid reflux on top of the stomach) for couple of more weeks then sensation on skin for several days and then tiredness in body right now. Surprisingly I have only one symptom at a time. For example, for the weeks that I have stomachache, thats my only problem then the next problem comes up and previous one almost completely goes out of the picture.
Question1) Is it normal over the course of hiv infection?
One scarier thing, I have a small lump behind my right ear which is there for more than a month, I think it is one big symptom already if you agree with me. One minor thing is that I hit myself once in the face pretty bad (I was nervous but it wont happen again). Soon after, the lump came out and its still there but it cant be because of me and since it is more than a month now.
I cant see a psychologist or psychiatrist because of a long story but I dont bother you with that. Just please dont be angry with me. I asked the girl to do the hiv test but I guess she is afraid to test so I almost gave up. She is asian American had several relationships in the past and currently in another one.
Question2) Should I be tested for rare strains or group o? i can't do that test anonymously. I only have trust in you. If you think my case is suspicious enough, I will try to make an appointment with your office (dont know how long it takes for an appointment but I can wait). Otherwise no more doctors for me, I kind of accepted to live in this shaky state of uncertainty. My life is a complicated drama and I made it like hell with my own hands. Oh god! I have lost some fat in the face to the level that someone suggested me to do an aids test. That was all I needed. Please answer my questions dr. Bob. You are the one.
Part 4? You're back again??? Well, here you are, still depressed as hell and freaking out over a condition you could not possibly have. You now have overwhelming and irrefutable evidence that HIV is not your problem and yet you continue to believe you're HIV infected!!! No, I'm not mad at you. I feel sorry for you and feel bad that you chronic depression is causing you such misery.
To respond to your specific (and repetitive) questions:
No. And you do not have HIV. I just can't say it any plainer or more straightforward than that!
No. Absolutely not.
Once again my assessment and advice remain exactly the same as they have been for your Parts 1, 2 and 3. (See below.) That you hit yourself and are inflicting self injury is a reflection of just how severe your emotional problems are. What's this nonsense about not being able to see a psychiatrist? Sorry, I don't buy that. Your type of problem most likely will not go away on its own. In fact, problems like yours often just continue to get progressively worse. I once again urge you to seek the help of a psychiatrist without delay. Bring a copy of all your posts and my responses to show to the physician at your first visit. It will help focus your treatment and speed your recovery.
I've now repeatedly shown you the path back to physical and psychological/psychiatric wellness; however, you must take the next steps on that path. I can't do that for you. You are HIV negative. How you choose to live with this truly wonderful and undeniable reality is totally up to you.
Dr. Bob, Please help me, I really need your help part 3 Oct 14, 2008
Dear Dr. Bob, I dont know how I can thank you for your previous answers to my questions and I am also really ashamed that I am back here again to ask you more questions. I just want you to know that you are the last person that I can trust and ask for help as I am really going down and feeling really lonely in this country. Dear doctor, I got my fourth month negative antibody test last week which I should have been happy with. I am here because of a very scary reason. Please dont get angry with me because of my post. I think I have peripheral neuropathy. It started 4 days ago and now its getting better. I had stinging pain and sensation (sometimes needle like sometimes itchy) in my toes feet fingers, hands, legs and palms. It started from my fingers in feet and hand and then spread around. This matches with HIV even though its not common in early HIV infected people. I am 26 year old male and used to be a healthy person. I think since I havent generated antibody yet, I get these symptoms this early. Maybe my body gave up on me too. I also developed a white coating in my tongue from mid to back and have it for about two weeks. Dr. Bob I know you usually dont recommend PCR test at this time but assume that I have nothing to loose. I agree that Ive been very depressed over the last 4 month but do you think stress and depression can also cause this peripheral neuropathy? I had a minor version of this pain two months ago as well for a week or so. last week I visited a nurse practitioner to look at my tongue and she said its not worrisome. I asked her for doing Whole blood count, Chlamydia, gonorrhea, syphilis, Hep B & C tests which all came back negative. The STD doctor at school doesnt give me any PCR test anymore as I had already one undetectable HIV-1 RNA test after 6 weeks prescribed by a different doctor. But he doesnt know about this recent peripheral neuropathy. I have already talked to a counselor once as you recommended. But dealing with HIV illness would be the easiest of all the other things I have to deal with because of HIV. Doctor, please advise me on what to do now? Should I see an internist? HIV specialist? Should I go back to the STD doctor at school? Do you think I may have HIV finally? Do you think a possible low CD4 count will suggest this PN and viral infection accordingly if I do the test? I cant trust my judgment any more.I have donated couple of times to your foundation as well as another HIV research foundation and will promise to do the same regularly if I ever get a chance to get a job. With regards,
Response from Dr. Frascino
"Thinking" you have peripheral neuropathy and actually "having" peripheral neuropathy are two completely different things!
To briefly respond to your specific questions:
"Advise me what to do now." I suggest you follow the advice I have already given you (see below). Your problem is psychological, not virologic. You need the help of a psychologist or psychiatrist.
Should you see an internist? No.
Should you see an HIV specialist? No.
Should you go back to the STD doctor? No.
Do I think you have HIV? No.
Should you get a CD4 count? No.
You clearly admit "I agree that I've been very depressed over the last four months . . . ." BINGO! There's your answer and that's where you need to focus your efforts to get well. Stress and anxiety can indeed cause the symptoms you describe.
My assessment and advice once again remain completely unchanged.
Dr. Bob, Please help me, I really need your help part2 Sep 26, 2008
Dear Dr. Bob, in my last email you mentioned that my test results are conclusive. Of course its really pleasant and heartwarming to hear it from an excellent HIV specialist like you when I have already self-diagnosed myself with HIV. Even though you said my symptoms werent suggestive of ARS, even thinking about those symptoms stop me from moving on with life if I can still call it a life. I had negative antibody at 3 months node and undetectable HIV PCR RNA at 6 weeks. Dr Bob my doctor at school knows you well as I live an hour away from you. I need you to suggest some tests for me because I am sure I cant wait like this for another three months. Is CD4 blood count, PCR DNA 1 and 2 DNA (qualitative) a good test? I accept the false positive probability because nothing could make me feel any worse but instead a negative could make me feel better. I will take your reply to him. I have to do something. I swear neither, its stress nor I exaggerated any symptoms. My doctor did some tests like mono, Chlamydia and hepatitis. (Unfortunately I didnt have any and its still got to be HIV) Dr. Bob, I still have the headache in front and sometimes on the side and back of my head. I heard headache could be a sign of seroconversion. I can feel a lymph node on the right side of my neck and left side of the back of my head which are swollen. I also have few more questions: 1- is my test 100% accurate or 97-99% ? its sad to be that 1% though. 2-Is it true that PCR RNA test can become undetectable after 6 weeks but PCR DNA will never become undetectable? 3-Would you please tell me why my symptoms are not suggestive for ARS. I swear its not stress. Please give me one more chance for a reply. I promise I wont take your time again even if I get a positive test. Yours,
Response from Dr. Frascino
CD4 cell counts and PCR DNA (qualitative) tests are not recommended for HIV diagnostic screening. I strongly advise against obtaining these tests.
My assessment and advice remain exactly the same as in my initial response to you. (See below.) You have overwhelming and irrefutable evidence that you are definitively and conclusively HIV negative. How you choose to live with that reality is up to you. Continuing to perseverate on a disease you could not possibly have is counterproductive. I sincerely hope you bring a copy of your questions and my responses to your doctor (particularly since he knows me well!). I strongly advise you be evaluated for psychosomatic illness. We have seen countless folks exactly like you at the Frascino Medical Group. After thorough evaluation, none of them has turned out to be HIV infected, despite the fact they all were "110% convinced" they were HIV positive when they came in for the evaluation.
Get the psychological help you need, not more HIV tests that you certainly don't need!
Dr. Bob, Please help me, I really need your help Sep 13, 2008
Dear Dr. Bob, You are a great person who shines light of hope on people like me. I desperately ask you to save this desperate stupid soul who lives an hour away from you. I have already donated 100$ to your foundation and will promise to do it again. please reply to me. I had vaginal sex with a girl about 3 months ago and the condom broke. I also had a cut on my finger which touched her body fluids. I will never forget that night. I had undetectable HIV-1 PCR RNA quantitative test on week 6 and negative antibody test on weeks 4,8,11, 12.5. My last antibody test was done 86 days after exposure and it was an HIV1/2 rapid blood test. All the tests where done in the Bay Area California. The reason I am posting this to you is that, still I dont really have the peace of mind after all and I am afraid if all I got is a false negative and I am one of those unlucky guys who mess up the statistic. I am really going through a horrible time and I would have never wasted your precious time if I wasnt in this bad condition. I had a series of HIV related symptoms which started about 2.5 weeks after exposure. I couldnt find a good reason for them and my doctor also didnt help me at all as I visited him a couple of times. Basically he said he can tell me what I dont have (he says I dont have HIV after my negative test on week 8) . But he cant tell me what I do have. I desperately need you to tell me what could or might be the source of my symptoms and if it could be still HIV related. Here is what I went through when first symptom started. First I had night sweat for two days. I guess I had fever but I didnt check it. First I thought its a simple cold or mild flu but then HIV came to my mind as I had flu shot vaccine last October or November. Then I had pain in arms and legs, pain in my stomach after eating for two weeks. I also got an ulcer on the top of my mouth about 4 days after the onset of symptoms and took about 4 days to heal. Then I had a mild, on and off pencil like or needle feeling on my skin (leg, arm, face) for another two weeks. It wasnt like it bothered me much but I had it anyways. Then again 1 or two weeks of tiredness in my muscles arms and legs mostly. Then kind of headache started for two weeks. Then short of breath for 1 week or two. I had still mild on and off headache in that interval as well. Then Pain in stomach after eating again and on and off headache again. Little before week 11 my lymph nodes under my neck started to hurt and lasted for more than one week (not swollen). I could still feel a different feeling on my neck on the week after. Right now after three month, I still get a mild headache on and off close to my eyes. Basically my symptoms followed each other and when previous one ended the new one started. I had also negative mono test and negative Chlamydia. During the last three months I never had swollen lymph nodes or skin rash or diarrhea. But I vomited once. My lymph node started to hurt 2.5 months after exposure. I though its a late seroconversion. But my test after 86 days is still negative. I am really sorry for such a long email. But I wanted to give you my exact situation and tell you whatever I went through. Do you think I am infected with this HIV? I used to be healthy and had a good immune system but why my body is responding this way? What could be the source of my symptoms. Please help me. There are times that I cant stop crying because of all I did and all I am going through. This is changing my life in any aspect you can name it. When should I test again? Yours,
Response from Dr. Frascino
Your repeatedly negative HIV-antibody tests out to 12.5 weeks and your undetectable HIV-1 PCR RNA at six weeks are definitive and conclusive. HIV is not your problem. No way. No how. (No McCain. No Palin!) No further tests are warranted!
Unfortunately, I cannot diagnose the cause of your symptoms over the Internet. (I don't have access to your medical file or laboratory tests nor do I have the benefit of a complete medical history and physical examination.) However, what I can do with absolute certainty is advise you what is not causing your symptoms: it's not HIV!
Your symptoms, by the way, are not worrisome for or suggestive of HIV acute retroviral syndrome (ARS). They are, however, quite consistent with stress, anxiety and psychosomatic illness. If your doctor cannot find a physical cause for your symptoms, I suggest you consider a psychosomatic cause. Psychosomatic illness produces very real symptoms! Certainly the stress of this HIV scare and your deep-seated fear of being HIV infected could be the cause of your problems. That you state "there are times I can't stop crying . . ." would indicate you are clinically depressed. Counseling could help you confront and conquer your fears, depression and anxiety. I urge you to seek the help of a psychologist. Bring a copy of your post and my response to your first visit and show it to your therapist. It will help focus your treatment and speed your recovery.
Thank you for your generous donations to the Robert James Frascino AIDS Foundation (www.concertedeffort.org). They are warmly appreciated.