Sep 17, 2010
OK, so you don't buy my story about having a high risk exposure almost 10 years ago, and then a few weeks later, rapidly losing 10 lbs of muscle in 48 hours, and then gaining around 18 lbs of trunk fat in the following weeks after that, plus swollen parotid glands, a whole host of ars/mono-like symptoms, followed by a chronic loss of lean mass and gain of fat that continues 10 years later, and having everyone I've exchanged fluids with over this 10 year span (100% of the people I've had unprotected sex with/exchanging of fluids) experience the exact same body shape change, accompanied by some forms of cancer, plus lowered cd4s and cd8s. You just don't buy it? That sucks for me, huh?
If you're so wise, and I'm so off base/delusional/just plain crazy, then perhaps you'd like to volunteer as a test subject to disprove what I claim. Let's inject my blood (after testing me negative for all known bugs) into you, and see if you don't have extreme body shape change over the following 2-8 weeks. Put your money where your mouth is. Of course you won't. You won't even take any of this seriously.
How about we make a deal. You inject my blood into you, and if you experience none of these symptoms, and nothing dramatic happens to your body composition in the following weeks, I will volunteer 1000 hours to any cause you choose. I would be willing to draft a legal document and sign that agreement. Would you?
Response from Dr. Frascino
Let me get this straight. You want to inject your blood into me to see if I develop "extreme body shape changes over the following 2-8 weeks"??? Oh my . . . something tells me you're not the brightest bulb in the tanning bed. Sorry Charlie, thanks but no thanks. I won't be accepting your ever-so-kind offer.
You are correct: I do not believe your story (but I'm convinced you do). My advice once again is to urge you to seek the help of a psychiatrist.
this is nothing like those other stories, please give it a chance Aug 22, 2010
I have read other "worried well" stories, and I agree most of them are just irrational fears. Please read what I wrote, it is not like these other stories.
Here are my reasons for suspecting I've been living with an unknown yet devastating, life-threatening infection for the past 8 years:
As a 23 year old super-healthy bodybuilder, I had a high risk exposure, and then a mono-like syndrome several weeks later, wherein I lost a peculiar amount of lean body mass in the absence of changed diet or exercise. Several weeks after that, I gained an odd amount of fat in its place. The muscle never came back no matter how well I trained and ate (lean protein, 6 meals a day, very disciplined).
I tested negative for mono, but positive for acute CMV.
My syndrome included swollen parotid tissue, ulcer in my gums, continued loss of lean body mass for no reason (about 10 lbs in a 48 hour period), and a bunch of general flu-like symptoms.
After the doctor assured me I had a clean bill of health, months later, I slept with someone unprotected, and she had the exact same syndrome a few weeks later. In her confusion about her sudden illness, her main complaint was a peculiar loss of size in a short period of time. And then a peculiar gain of fat in its place. As with me, hers was involuntary body shape change too. She also reported a rush of dizziness (I experienced the same thing) that she described as feeling like some kind of stimulant was rushing through her veins and body. Like speed.
Over the years, I had several more unprotected partners who also experienced this exact peculiar metabolic change after their exposures to me. Extreme and sudden loss of lean body mass, followed by extreme fat gain. None of my protected partners experienced this syndrome, however.
Several years after the first unprotected partner, she was diagnosed with non-hodgkins. She had no known risk factors other than being a light smoker, and no family history of cancer. Sure, the smoking could have been a co-factor, but it would seem another co-factor would be necessary to prevent the body from protecting itself from NHL, even in the setting of light smoking, being this was an otherwise healthy 21 year old.
The other partners have suffered from extreme body shape change, and a host of ailments ranging from high grade cervical dysplasia (and showing every single known hpv strain on her pap-smear), to general declining health.
My body shape change mimics HIV positive body shape change, minus the sunken in cheeks. My body is generally getting smaller for no reason, while gaining fat in the belly. My face is smaller, scrawnier (under my eyes, my temples, etc), with some slight puff in my cheeks (a little extra fat). This would make sense being as I'm not on any HIV meds that would cause lipoatrophy in cheeks. To the contrary, my cheeks are devoid of my old healthy looking structure, and instead, filled with fat.
My cd4s have been slightly abnormal, usually ranging from 500-700, onetime in the mid 400s. I understand these are not necessarily indicative of chronic HIV-like levels, and they are technically within normal range, but for a guy who was healthier than anyone I knew prior to this, it doesn't make much sense that i'm consistently in this range, at my age, with my healthy lifestyle. And it goes hand in hand with my other symptoms and suspicion of chronic infection.
My glucose is also higher than normal all the sudden. Consistently.
I also have plural thickening on my lung all the sudden, and I'm a non-smoker.
My knees get very cold now, due to a bareness of muscle around them - it's apparent that the muscle has receded away from the the joints, as the loss of lean mass progresses.
It is clear to me that I am carrying some kind of infection. Maybe it's not HIV, but it certainly is ruining my life, and those exposed to me get very sick, and I seem to be on a path of worsening health. When people see me after not seeing me for a few months, they usually say things like... "you look different... your face looks smaller" or "you look so young". And it's because the loss of tissue in my face alone has given me an adolescent look. But it's accompanied by triangular rings under my eyes that also cause people to assume i'm not sleeping enough (even though i get 8 hours of sleep every night).
An ironic side note: though my face looks smaller and younger (though tired) in certain ways, my body looks a lot like a bodybuilder in his 50s. Thinning upper thighs, shrinking glutes, generally dilapidated even though muscular. Like an aging bodybuilder. I'm 30 now. This began when I was 23. My muscles should not have begun degenerating at 23. Something is wrong there. Not to mention everything else that has accompanied the body shape change.
There is literally nowhere for me to turn. A general practitioner knows nothing about this stuff. HIV doctors won't deal with me with because my blood is basically normal on paper. But when you step back and look at the whole story, you can clearly see something is wrong.
So I ask again, have you heard anything new about emerging viruses or infections that mimic metabolic symptoms and some other symptoms of HIV/AIDS in HIV-negative patients?
I need to enter some sort of study. The fact that I can legally donate blood is troubling. Luckily, I know not to do such a thing. But those who have been exposed to me do not know. Rest assured I will never expose anyone again, knowing what I know now. But measures need to be taken to find the cause of this. It would be insane and reckless for doctors to continue ignoring my situation, and perhaps that of many others. I'm not "worried well", although I understand many are. I'm falling apart, and seeing those exposed to me doing the same. I'm not worried, I'm just doing the right thing and not letting it go ignored.
Response from Dr. Frascino
You've had an "unknown yet devastating life-threatening infection" for eight years? Hmm. And your "syndrome" caused you to lose 10 pounds of lean body mass in 48 hours? WOWZA. That would probably put you in the Guinness Book of Word Records and also in the hospital.
Dude, sorry, but I just don't buy your story of a sexually transmitted syndrome of rapid body shape changes. It just doesn't make sense medically speaking.
My advice would be to see a good general internist who will evaluate all your complaints. If your symptoms cannot be substantiated (as I suspect) or if no physical cause can be determined (which I also suspect), I would recommend you be evaluated for psychosomatic illness. You may indeed have "something," but it's certainly not HIV.
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