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what would you do?
Sep 26, 2010

Hey Nelson, have you heard anything new about HIV-like viruses causing AIDS-like conditions in people who are HIV negative? Or are these people still being categorized as 'worried well'?

I have been living with what I believe strongly is an HIV-like infection for the past 8 years.

Here are my reasons for suspecting this:

As a 23 year old super-healthy bodybuilder, I had a string of risky exposures, 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 alarming. 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

Hello,

Mr. Vergel forwarded your question to me. My response remains unchanged.

Dr. Bob

anger management guy Sep 26, 2010

It's pretty alarming that you tell me I'm not infectious to anyone, that I can freely expose people to my fluids, yet you would not volunteer being injected with my blood. If I'm as innocuous as you claim, why would you be afraid to be injected with my blood?

And by the way, ALL early cases of AIDS presented with stories and clusters similar to my own.

Basically, you're making your bed, and you will sleep in it. When this does become undeniable by scientific measures, I will refer everyone to these posts where despite my detailed story, you were actually encouraging me to expose partners to my fluids, spread this disease sexually, donate blood, and contaminate the blood supply. In essence that is what you're doing. I've done all I can do to be responsible about this situation. With no hard proof, I can only use common sense. I will never have unsafe sex again, to protect all my partners from this. I will never donate blood, to protect the blood supply. I will encourage others in this cluster to follow my example. And all the while, you laugh at me essentially. You will definitely have to answer for your treatment of this situation once this story fully unfolds.

My anger is completely under control doc. This isn't about anger, it's about responsible behavior. If someone presenting with my symptoms in the early 80s suspected strongly that he was carrying a life threatening infectious disease, and his doctor responded the way you have responded to me, guess what, the patient would be correct and the doctor would have made a colossally irresponsible mistake. Well, you better rub your lucky rabbit's foot pal, because I am the real deal - this situation is the real deal. I'm no hypochondriac, my head is screwed on straight, and I'm pretty much at ground zero of a major health threat in this country. Luckily I'm smarter than you, so this thing might be containable. But I will get to the bottom of this, break this story, and then use you as a prime example of the dangers of arrogance in a field as important as medical science. Stay tuned.... I promise things will get interesting.

Response from Dr. Frascino

Hello Totally Looney Tunes Fluffernutter,

Are you back again? Just how wacko are you? Do I need to merely block you from the site or should I put out a restraining order on you for your truly crazed idea of wanting to inject me with your blood? It's fine with me if you have decided never to put anyone at risk of contracting your imaginary disease by never having unprotected sex! In fact that's probably a good thing. Some forms of insanity are genetic and it's probably not a bad idea if you avoid ever having offspring.

Dude don't bother writing back. I won't be posting any more of your nonsense or thinly veiled threats.

The best I can do is I wish you enlightenment.

Dr. Bob

shame shame shame Sep 19, 2010

After my disease cluster reaches a size where correlation is undeniable, I am going to really stick it to you. I will make sure your response to my story - your blatant doubt - is underscored as one of the reasons this went unchecked as long as it did. For a doctor who took a hippocratic oath, for you to tell a patient that you simply "don't buy" his story, is reprehensible.

I will use you as the prime example of a doctor at the top of his profession, using hypochondria as the default diagnosis in cases of rare physical disease. Your attitude has a life threatening effect on what will be very unlucky blood transfusion recipients, sexual partners, etc. This group is growing, people are getting cancer, lives are being destroyed, and you're playing cute little word games, and misdiagnosing people with hypochondria. Strap in, the ride is going to get bumpy for you ahead - I can guarantee that.

Repeating the same mistakes made by the medical community in the early 80s with HIV/AIDS, you will be known as the 'hippocratic hypocrite' - an HIV positive doctor who dismissed the earliest cases of another emerging infectious disease that caused cancer in a high % of infected patients.

I know many "worried wells" probably issue these types of angry warnings to you, and you've been fortunate in the past that they never came to fruition. But like I said in the first message, this is nothing like those other stories.

It's never too late to change your attitude and open the door to a real discussion. But until you do that, I will absolutely target you as one of the early deniers of this disease. I promise you, it won't matter what good you've done for the HIV/AIDS community, when you've disregarded the welfare of another community - one that is growing and suffering as we speak.

Response from Dr. Frascino

Hi,

First, I'd like to point out you came to me and asked for my advice/opinion and that's exactly what I provided. Whether you want to accept that advice/opinion is totally up to you.

Second, you might want to ask for a refund on those anger-management classes.

Dr. Bob

prove it 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

Hello,

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.

Dr. Bob

re: dude, I just don't buy your story Sep 17, 2010

I know you don't want to have a back and forth argument about this, and that's not my intention. Just please stay with this a little more. This is a long one, but please, continue giving it a chance. I appreciate your first response.

Every time I explain this situation to a doctor, he begins working backwards from the assumption that if I don't test positive for a known virus or bacteria, I cannot be infected with anything life threatening. Can't you see how scary a scenario this could be? It's just as absurd as my working backwards from the assumption that I'm sick with a life-threatening infection - except that all the details of my story indicate something is seriously wrong with my system, and the systems of those who are exposed to me. And the fact that you don't buy parts of my story is very scary to me, because it indicates that in order for me to not be in danger, I have to magically remove certain facts about the story, the same facts you refuse to "buy". This means I have to be in denial about what's going on.

I am an extremely disciplined and scrupulous bodybuilder. My weight was always between 152 and 155 prior to this - usually 155 (I'm short). Very consistent diet and exercise. During the acute phase of this, the first sign was simply visual. I woke up and saw my physique in the mirror while brushing my teeth, and it was much thinner than the night before. Not quite gaunt, but noticeably thinner - I had lost muscle, undoubtably. It was just as odd as it sounds. I stepped on the scale and it read 145. I wasn't dehydrated, and I had been eating exactly as always. But my skin was somewhat red, and I felt hot. I continued eating my normal 2,500 calories that day of lean protein and carbs. The next day my parotid glands were swollen and burning - my mother said I looked like a cobra the way they were popping out. That day I stepped on the scale and it read 143. And I felt very weak, dizzy, and confused.

I went right to my doctor, who checked me out, verified the swollen parotids, the weight change, and even administered a few strength/lean body mass physical tests to see if anything was abnormal with my muscles. One test involved pulling my arm away from my body to see how well I could resist, and the other involved having me flex my forearm and squeezing the muscle to see how firm or soft it was. I failed both tests (according to him) and he said he didn't believe I was failing them involuntarily (that I was failing on purpose). Um... ok.

Then he attributed the weight loss and body shape change to the theory that I'm not working out like I used to. He assumed this without asking me about my present lifestyle - he just made the statement with no information. I explained my diet and exercise were as optimized as ever, with no changes. He just looked at me doubtfully.

I notice this about doctors. When confronted with something unexplainable, or difficult to explain, they grow doubtful of the patient's credibility, honesty, or the accuracy of the patient's memory. It basically sets the rules so that a patient is completely alone if he presents with a rare condition that is difficult to diagnose and to understand.

Essentially, I'm saying I have something similar in certain ways to HIV, perhaps less of a T-cell attacker, and more of a catabolic causing agent, a virus that promotes cancer consistently in otherwise healthy hosts. Every single unprotected partner I've had since this began has had extreme body shape change, visible loss of muscle and odd fat gains in a very short period, and has subsequently been diagnosed with cancer, or early warning signs of cancer (that's not part of my theory, that's medical fact, on paper). I have no history of mental illness, nor does anyone in my family. No hypochondriacs, no delusional personalities, no schizophrenia, nothing. I feel my perception of what's going on is very lucid, and if anything, I'm downplaying things, not exaggerating them. I have no cancer, however I just found out I have pleural thickening on my lung, on the side of my body where my glands have been most pronounced. I attribute my taking this long to develop a warning sign of a serious condition to my ultra-healthy lifestyle and avoidance of inhalants and alcohol. Still, 8 years later, in my third decade of life, I'm showing problems most healthy men get in their 5th decade in life.

And essentially, you're saying, "dude, I just don't buy your story". So hypothetically speaking, IF I'm not lying to you, and IF I have no mental illness, and IF my story is accurate (not my theory, but my story), then I'm simply screwed? You know, we can even skip the other parts of the story, and just focus on your doubting the rapid weight loss I had in the beginning. Are you basically saying that anyone who loses 10 lbs of lean body mass (in the absence of drugs, dietary changes, or changes in exertion) in a window of 48 hours is in serious trouble? If so.... help?

Side note: when this first began, during the acute illness phase, my doctor drew blood for an HIV PCR test, in case I was seroconverting. The test came back "indeterminate". I know what you're going to say. That PCR cannot be indeterminate, only ELISA/WB can be indeterminate. Well the technician told my doctor that he "saw something", but couldn't determine whether or not it was HIV DNA, and that we should retest in a few weeks. Several weeks later we retested, and the PCR was negative. But this was after the acute phase was over, so I wasn't surprised that whatever possible viral DNA was at one point visible, was now being somewhat suppressed and undetectable. All ELISA tests have always been negative, to this day. I'm betting you won't "buy" this part of my story either. If so, it's just a very unfair and scary situation, to have to go through this, and then be met with doubt about my sanity and honesty. I can put you in touch with the doctor I referenced, who is one of the top physicians in my city. Please call my bluff on this.

The more you learn about this, the more surprised you will become. And at a certain point, you will have to make a decision as to how interested you are in getting to the bottom of it. So far, most doctors have proven that no matter how fascinated they are with this case, their hands are tied to push investigation beyond the traditional blood tests. And the reason is that not enough people are presenting with the same issue to create an incentive for any serious studies that would benefit me. You will respond by saying more people would have this infection if it really existed. I say, many HIV positive people probably do, but the symptoms and diseases associated with it have a huge overlap with those of HIV - so why would anyone look further in an HIV patient, after one has already tested positive for HIV?

Response from Dr. Frascino

Hello,

There is no argument here, but dude, I still don't buy your story! I'm not questioning your honesty. I realize you believe you have an unrecognized cancer-inducing medical condition; however, I, like all the other doctors you have consulted, remain absolutely certain you do not! Your claim of losing 10 pounds of lean body mass overnight is just not physiologically possible, even though I know you believe that's what happened.

As for your hypothetical situation -- "IF I'm not lying and IF I have no mental illness and IF my story is accurate, then I'm simply screwed?" -- that's three very big IFs, don't you think? My assessment is that you are not "screwed," but rather "screwed up" by your irrational fears of having a "life threatening illness" and sexually transmitting a cancer-causing, body shape-changing microbe to your sex partners over the past eight years.

As for your question -- "are you basically saying that anyone who loses 10 lbs. of lean body mass (in the absence of drugs, dietary changes, or changes in exertion) in a window of 48 hours is in serious trouble?" No, I'm certainly not saying that at all. Rather, I'm saying it didn't happen! No way. No how.

As for your indeterminate HIV PCR, you are correct: there is no such thing. The test can either detect HIV DNA (or RNA) or not detect HIV DNA (or RNA). The only other option is an invalid test due to some type of technical error.

By the way, if indeed you had HIV genetic material (DNA or RNA) present, it would't disappear and become undetectable within a few weeks (assuming you were not on antiretroviral drugs). As all your ELISA tests have been negative and your repeat PCR was undetectable there is only one conclusion: HIV is not your problem.

My assessment and advice remain unchanged. You do not have body-shape changing, cancer-causing sexually transmitted disease. You need the help of a psychiatrist. Print out copies of your questions to me and my responses to show to your psychiatrist. It will help focus your treatment and hopefully speed your recovery. Your psychiatrist can consult with your private physician as needed. I have absolutely no reason to do so, as your problem is psychiatric, not infectious, and certainly not HIV related.

Good luck. I think you'll need it.

Dr. Bob

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

Hello,

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.

Dr. Bob



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