|Bat shit crazy
Jun 6, 2011
Hello doc. I want to start off by saying thank you for a good laugh recently. I read on your forum about the woman who fell asleep at the massage parlor and was afraid that she was raped by two men while sleeping. Your response that she was "bat shit crazy" made me laugh....hard. I really needed that. Laugher. Also... Yes I am still pecking away on my iPhone.
Thank you for your attention to my past emails. Of course I will be making a donation as I always do for your time and mission of helping others like me and because my posts are always long winded. To start, I am including a link (http://www.thebody.com/Forums/AIDS/SafeSex/Q214558.html )to the consolidation of my past emails so you can review everything because I have been very detailed on the situation and have recapped it as well. Doc I am having a hard time with the circumstances, ongoing symptoms and believing that I and my kids are not infected with a virus.... specifically HIV. Get ready cause I'm going on just a tad of a tirade. Just a tad. You can handle it.....oh and sit down in a nice cushy chair with a glass of Pinot Noir and some chocolate when you read this lol.Its a little long winded. I am really grasping for answers here!
I hate to say it but I think you may be wrong in my instance. Some of the things you have said to others like me have really surprised me as well. I read the postings from the guy in Australia who's daughter is sick now several years after he thinks she was exposed to him. Very similar to my situation, except I get the horror of awaiting my kids to get sick. So many individuals who after being convinced that they are not infected despite all the symptoms then their loved ones coming down with the same thing. I don't understand your reluctance to believe the possibility of a new virus or a mutated strain of HIV. I am also having a hard time, with HIV being such a rapidly mutating type virus, that your faith in the current testing such as ELISA is the end all conformation. Why do they need to keep having newer generation of ELISA tests? Perhaps because they keep adding new genetic primers (or whatever you call it) to make sure it reacts to newly discovered variants? You tell me. You are the educated one, I am trying to understand. If someone has been incredibly healthy their entire life, has a sexual instance and after that has every documented type symptoms after that but doesn't test positive with ELISA after three months, then they are good and despite everything else? When does someones clinical presentations become a problem with a negative ELISA before some doctor says hmm maybe the test isnt accurate? Do they have to die? I don't blame you for trying to fit many circumstances and situations for people from "bat shit crazy" types to high risk unprotected anal sex situations in one forum without a physical examination but come on Doc! Lets look at my situation...
Extremely healthy 39 years old, NEVER sick and best shape of my life in November 2010.
Then Sex with Filipino prostitute.
Afterwards starting at day three: explosive diarrhea for a week straight and abdominal pain for weeks afterwards.
After week 4: very high liver enzymes, protein and blood in urine. rapid weight loss, rash over entire back, white mouth ulcers on inside of cheeks, white coating on tongue, burning skin on back, arms. numbness in hands and feet at night and now during day as well. Tingling lips, strange skin issues, stabbing hot needles in random skin areas, pain in kidneys, joints and gums. All of this for me out to the present. Currently my liver enzymes are high again my joint pain and gum pain is getting worse. If it continues from here I am seriously worried about my teeth/gums and my joints. The pain level is increasing. I would take pain medication but I dont know with is wrong with my liver and kidneys! All this past 7 months! My doctor has ordered an ultrasound on my liver because of the enzymes. Multiple ELISA tests BDNA and PCR tests were conducted up to 17.5 weeks and they were negative. So is it any wonder that I am dreading my next Elisa test? Is it any wonder myself and many others with legitimate exposures dealing with health issues are extremely upset and grasping for answers and sanity? Depression? Who wouldn't be? Depression and anxiety are the symptom of the medical problems not the other way around!
Whatever I have is aggressive, progressive and unrelenting. Even you said that I must have a "transient illness". My joints are getting downright painful and I'm doing just barely ok in controlling my mental attitude, and depression for now considering I am absolutely certain that this was passed on to my two children through urine and saliva which is supposedly not supposed to happen. Well I'm calling BS on that one! Look back at my other posts to see what happened. They actually had the classic HIV acute symptoms (even according to the infectious disease nurse that works under the doctor that I have seen.) Mine have been atypical but all within the published criteria. I've mourned them for 6 months and cried a thousand tears. If I think about the future for me and my children I feel an overwhelming sense of despair and loss. So now all I can do is smile and live for today and not think about it and wait for the ball to drop. When that time comes and I have to look into my wife's eyes and my children's and see their horror and the realization that the man who was supposed to protect them has instead cut their life short! It's more than I can bare. I have gone past the denial and grief stage and now I am in the angry phase. You didn't cause me to risk myself and my kids, I did. I am just want the doctors including you to help me with some answers without the "anxiety" explanation!
1. I want to know why you are so certain in my case that this isn't HIV! It's clearly a virus of some kind! Transmitted through sexual contact in my case but also through urine and saliva in my children's situation.
2. My burning tongue and burning skin has finally started to somewhat subside for the most part at 6 months, or more actually more like 7. Now all I have left over is the painful kidneys, and high liver enzymes and random hot shooting skin sensations and worsening joint and gum pain. My joints are getting worse by the day. Also wicked numbness in my feet and hands. Does that mean I could be finally seroconverting or it may have taken this long? If you have kids would you bet their lives on your answer?
3. Are you willing to take your lumps if you are wrong and post my confirmatory email to you if I turn positive on my next antibody test? Come on... you have had to be wrong sometime over the years. Your only human and can't be 100 percent right all the time! I really want you to be right but for lack of another explanation with all the circumstances, I think I'm in trouble.
4. Is it possible that if this is a mutated HIV strain and being that I was negative on a generation two or three test (I think that's what Kaiser uses), that if I used a generation 4 test, or a future update, that I would show positive?
5. If not HIV what other known virus could cause all this? I'm all ears for another explanation. This hell all started after sex with a sex worker. It's why I keep going back to HIV.
Look, I know that something is wrong I've never been sick like this. Maybe not HIV. Maybe it is. Nonetheless, it's serious and was very communicable when myself and my daughter had a high viral load. Also it's very symptomatic in my case. I don't know what to do from here except hold on for the ride and pray for the best. Difficult when my kids are my greatest accomplishment and now, my ultimate despair. I am deeply moved by your situation Doc Bob along with millions of others that know for sure that they are infected with this horrible disease. No one deserves this affliction. I pray every day that a cure will be discovered. Or perhaps the key to all retro viruses, not just HIV. I and thousands of others appreciate your support in these very difficult times as well. Your opinion is the only hope I have and as much as I feel you are wrong because of all my health issues, I desperately want to believe you. Would I like a second chance? Absolutely. With my continuing health issues and what my kids have gone through so far....... I don't think that's going to happen. My daughter complains of gum pain like me my son had complained of kidney pain. My daughters eczema was always confined to her wrists but now has exploded to all over her body. They both have weird skin problems now all over their bodies. I am living a nightmare awake every day and I think It is just going to get worse. I cant believe this is happening. Anyway, God Bless you Doctor Bob. Please help me understand what is happening to me and my kids.
Wishing I was just bat shit crazy
| Response from Dr. Frascino
Welcome back to the forum. You are not quite bat-shit crazy yet, but you have definitely moved into the completely looney tunes fluffernutter category.
I don't deny your symptoms and I acknowledge your anxiety. Unfortunately I strongly doubt anything I can say will convince you that you are not HIV-infected. Even with your updated information my assessment and advice remain unchanged.
1. Your medical history and symptoms are not consistent with HIV/AIDS.
2. Your repeatedly negative HIV-antibody tests, now out to 17.5 weeks, plus your undetectable quantitative HIV PCR RNA and bDNA tests are to be expected, because your are HIV negative.
3. Your fears are irrational. Believing you are HIV-infected and actually being HIV infected are two very different things!
4. Your fears about your kids being HIV infected through urine or saliva are irrational. (HIV is not transmitted this way.)
5. Regarding whatever illness you picked up from your filipino sex worker, one thing is absolutely certain: It's not HIV. No way. No how. I can't diagnose the cause of your symptoms over the Internet, but I can advise what's not causing them: It's not HIV!
6. I strongly urge you to seek the help of a psychiatrist. Irrational obsession with HIV can be a sign of depression, obsessive-compulsive disorder or hypochondriasis. If it's not treated, you could indeed wind up bat-shit crazy.
Thanks for your ongoing support of The Robert James Frascino AIDS Foundation (www.concertedeffort.org). Now stop "pecking away on your iPhone" and instead use it to call and make an appointment with a shrink. Be sure to bring copies of your posts and my responses to your first visit to discuss with your therapist. This will help focus your treatment and speed your recovery.
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