Jan 22, 2010
hi . its hiv group o. im pretty sure. that is what is causeing the lipo, and its not showing on the test. i did test for hiv 1 and 2 , but not o. i just now did test for group o. please tell me what you think. i would like to know why you do not think its hiv group o. waiting for your answer. thanks jon
| Response from Dr. Frascino
I'm assuming since HIV-2 didn't pan out, you're now fixated on group O. I guess that shouldn't come as a surprise to anyone who's followed your angst-filled story to date. (See below.)
Why don't I think you have group O? Primarily because I doubt you schtoooped a person from either Cameroon or Gabon.
western blot negative (ANOTHER EXAMPLE OF SOMEONE WHO WAS CONVINCED THEY WERE HIV POSITIVE, 2010) Jan 14, 2010
ok , so you are sick of me. i notice cause you are responding to my emails. well , i got back my western blot . its was negative.so i have rule out hiv 1. for sure. the only thing i need now is a hiv viral for hiv 2. and i will be done. take care jon. so you are right up to this point again.
Response from Dr. Frascino
Glad to hear my assessment has proven to be correct so far. You do not need HIV-2 viral load testing, but I can advise in advance that it, too, will be undetectable (negative). I'm a bit perplexed by your comment: "So you are sick of me. i notice cause you are responding to my emails." Hmm. I'm sick of you because I'm responding? WHAT? Jon, I'm not sick of you and you are not HIV infected.
your right (ANOTHER EXAMPLE OF SOMEONE WHO WAS CONVINCED THEY WERE HIV POSITIVE, 2009) Nov 11, 2009 hello again. well i got my cd 4 count back. it was normal, and it was pretty good i would say. it was 50% and one thousand three hundred something. i dont know what to say, so far you are correct about the hiv. i still dont understand how my arms have lost all there fat. its scary. and my butt has sunken and my cheeks are no longer there. im 39 years old and never herard of this in my life. all i know is for sure is that my arms are very skinny,very hard to look at them. and while i did have a exposure, after that my lymphnodes did swell up, and i mean they got big, fill with fluid. this is what i know. my toes turning black is another thing. oh and my butt rash still there. everyday no matter what. yeast? lipo? well. thanks i know i am a broken record. i am going to go for counseling. take care. jon.
Response from Dr. Frascino
Thank you for taking the time to write back. As anticipated, your CD4 count is completely normal. I'm delighted you have decided to get counseling (psychotherapy). It is indeed the first step on your path back to both emotional and physical well-being. Bring a copy of these questions and my responses with you to your first visit and share them with your psychiatrist. It will help focus your treatment and speed your recovery.
I will add your post to the many others in the archives from those who after being absolutely convinced beyond any shadow of a doubt they were HIV infected eventually realized they were HIV negative.
Good luck Jon! Be well!
probaly wont get posted Nov 7, 2009
hi dr bob hope your doing well. i went to e.r. and he did a cd4 count and cbc . i am waiting for the result. as i told you my arms have lost lots of fat . my elbow has no fat . it sticks out pointly. anyways he agreed i have lipoetrophy. im sad and dissapointed becasue i knew i was infected . i just tested negativee on hiv elisa and rna. so it must be a rare strain. i just keep thinking how many other people are like me. and not to be rude but you say yahoo after three or sometimes a year. for me its been over two years. i know you are right 99.9 percent of the time , but not with me. once i am dianosed i will go public and will from here out make sure the hiv test is not three six or a year or more. its about symptoms. it does not matter what the exposure was. if you were exposed then there needs to be a test or a protcol for people like me . even if i am the one in a zillion. i am still human. i will not move on and just deal with my hiv or now aids dianosis, i will make sure people know that if you were exposed and have symptoms that keep going then there needs to be a plan.somethng. i been going through this crap for so long . no support . doctors calling me nuts, my family calling me crazy myfrineds calling me nuts. i have tried everything. it is diffeicult to get a cd 4 count .anyways take care you do help most people, but i wont let the world forget about the one in a zillion. that sounds weird.
Response from Dr. Frascino
You tend to write to my fairly often and if I posted all of your reports, I wouldn't have time to answer other questioners. My assessment of your situation remains unchanged. HIV is not your problem. You've had numerous negative HIV tests, including HIV plasma PCR RNA viral loads. You've seen multiple physicians, all of whom have come to the exact same conclusion: You are HIV negative. It's unfortunate that despite overwhelming and irrefutable evidence that you are HIV negative, you continue to believe you are infected. You are not the "one in a zillion." In fact if you read the archives of this forum, you'll indeed find many others who were "110%" sure they were infected. As it turns out, none of the are! I'm not denying your symptoms. I'm merely advising you that HIV is not the cause.
My advice to you also remains the same. You need the help of a psychiatrist to help you cope with your irrational fears and to accept the reality of your HIV-negative status. The ER physician who ordered a CD4 count shouldn't have. In your case there is no clinical indication for that test. It is my sincere hope that you will follow my advice (since you continue to post comments and updates here, I can only assume you respect my opinion and experience) and that you accept the truly wonderful news of your definitively negative HIV status.
Jon, even though you conclusively do not have HIV, you do indeed have a very significant medical problem that requires ongoing treatment. Stop chasing a disease you do not have and get the psychiatric help you need to restore both your physical and mental well-being.
I wish you well.
Aug 31, 2009
ok, thanks for the reply. i hope your right. i will not bother you anymore. i swear. im sure you heard that before. i will keep your reply and read it everyday, but i need to get better and i know it will take time, this situation has been going on for a long time and im sure it is going to take time to move on. anyways im writting to say thank you cause i really would like to belive you, but i dont . sadly i wish i could , also i really mean i will not write you anymore, unless i get a poitive elisa , which i dont want. i have a child and my girlfriend wants another kid, but i refuse to have sex. not that you needed to know this, but i want you to know that i will never have unprotected sex again. i really cant even imagine having sex period. take care jon
Response from Dr. Frascino
I wouldn't call this "the end." I've laid out a clear path for you to regain both your physical and psychological well-being. I again urge you to follow that path and consider this the beginning rather than an end.
me again Aug 30, 2009
THANKS FOR ANSWERING MY QUESTIONS. MANY OF THEM. WELL I HAVE TO SAY THAT HIV IS MY PROBLEM. WHAT I DONT UNDERSTAND IS THAT THERE IS NO TEST FOR HIV O OR N. THAT IS WHAT I HAVE. I KNOW I TESTED NEGATIVE, AND THAT I AM NEGATIVE FOR HIV 1 AND MOST GROUPS AND SUBTYPES. ANYWAYS WOW, WHAT DO I DO. THIS IS CRAZY, MOST PEOPLE WHO TEST NEGATIVE ARE NEGATIVE AND ARE W.W. I AM NOT. WHAT A NIGHTMARE. DONT KNOW WHAT TO DO. ALL HIV EXPERTS WONT DEAL WITH ME CAUSE THE TEST I TOOK SAID NEGATIVE. SO THERE NEGATIVE THAT DOES NOT MEAN I AM HIV NEGAGITVE WITH O OR N.. I DONT WANT TO GET A CD 4 COUNT AGAIN, CAUSE EVEN IF IT SAYS 200 OR BELOW THAT WONT MEAN ANYTHING. EVEN THOUGH MY ARMS AND LEGS ARE VERY SKINNY, TOP OF ROOF VERY SORE, BUTT RASH THAT WONT GO AWAY, AND SWOLLEN LYMPHNODE UNDER EAR THAT IS BOTHERING ME. WHY WITH THESE SYMPTOMS AND A AEXPOUSRE TO HIV. YES IT WAS WITH A HIV POSITIVE PERSON GAY ALSO. SO THIS I DONT GET. WHAT DO I DO. I HAVE NO INSURANCE.SO I CANT REALLY GO TO DOCTOR. ITS BEEN TWO YEARS, AND MY BODY HAS CHANGED BIG TIME WITH NO MEDS. IM WEAK AS CAN BE, AND GETTING TIRED FROM DEPRESSION AND THE HIV. IS THERE ANY ADVICE YOU CAN GIVE SOMEONE WHO HAD HIV TPYE N OR O AND HAS TAKEN THE ELISA BUT IS NEGATIVE. I CANT BE THE ONLY ONE IN THIS SITUATION. OH AND I DO KNOW THAT HIV O MOST OF THE TIME IS DECTECTED, NOT ME. . REALLY WHAT DOES ONE DO. I COULD OF YAHOO A LONG TIME AGO , BUT WITH MY ARMS LEGS FACE BUTT SORES, . SO ON . NO IM NOT NUTS. I WOULD NOT WANT THIS ON ANYONE. BUT I DONT GET HOW IF SOMEONE IS INFECTED WITH GROUP O OR N. THEN THERE JUST A SHIT OUT OF LUCK. IT DOES NOT MAKE ANY SENCE. I DONT EVEN KNOW WHY I AM WRITTING YOU CAUSE THERE IS NOTHING YOU CAN DO. ONE DOCTOR TOLD ME ALL WE CAN DO IS GO BY THE TEST. THATS FINE, BUT I HAVE NOT BEEN TESTED FOR N OR O. .MY CHROLESTROL HAS ALWAYS BEEN SKY HIGH AND I THINK THAT IS WHY I AM LOSING ALL THE FAT IN MY ARMS AND LEGS. MY BELLY IS BIG. NOW WHAT. TAKE CARE. I WILL GET A DIANOSIS SOMETIME IN THE FUTURE. AND WHEN I DO I WILL WRITE AND TELL YOU THAT IT IS TYPE O OR N. WHAT AM I DOING WRONG. BYE ROBERT. I KNOW THIS EMAIL SOUNDS NUTS, BUT IT IS THE TRUTH. IF I WAS NUTS I WOULD NOT HAVE LOST ALL THE FAT IN MY ARMS AND LEGS. AND BUTT. ALSO MY FACE. THE RASH BETWEEN MY BUTT WONT GO AWAY, AND I HAVE THE LYMPHNODE THAT HURTS UNDER MY EAR. YES IT HURTS.
Response from Dr. Frascino
It's unfortunate you continue to perseverate on a disease that you could not possibly have. Your problem is psychiatric, not virologic. I agree you are clinically depressed. It's unfortunate you are one of the 47 million Americans without health care insurance. (Remember to support Obama's efforts to reform healthcare and make insurance available to all!) What you need is psychotherapy (counseling), not additional, totally unwarranted HIV tests. The best way to regain your physical and mental health is to get the psychiatric/psychological help you so desperately need. Continuing to chase after this an HIV diagnosis despite overwhelming and irrefutable evidence that you are HIV negative will only make your condition worse. The road back to health and happiness is clear. It's up to you if you choose to take it.
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