you're the man dave
Feb 15, 2004
Dave, I know you guys hate questions that aren't about HIV or HIV meds, but please bare with me. This is about CMV, and it is not a usual situation. I have seen numerous specialists, endocrinologists, infectious disease specialists, oncologists, internists, neurologists, and all the tests we have taken show no evidence of any problem other than CMV antibodies at a very high titer, and before and after pictures and before and after measurements that show a serious downward trend in my lean body mass despite closely regulated exercise and diet.
I have written in here before with frustration because of this odd wasting syndrome that has still not yet subsided, and it has been almost 3 years since I first became aware of it. The only thing I test positive for uequivocally at any time is CMV (which I do believe is what caused my acute syndrome in the beginning with swollen glands, thrush, night sweats, and severe weight loss). Prior to the CMV infection, I had some gradual muscle loss and it could have been from all the suppliments I took plus all the raw eggs I had drank over the years. But the CMV acute infection really changed my appearance and I do continue to lose more muscle without recovery of any of it. I am trying to find out whether or not I have candida, which I would suspect I had prior to the CMV infection. Do you think it's possible that upon an already existing candida problem, that CMV could operate like an opportunistic infection? We know CMV causes wasting in HIV positive people - could it be doing the same in me, with the candida, or some other pre-existing bacterial or fungal infection acting as an enabler for the CMV to really do damage?
I was surprised at how fast the doctors abandoned my situation when they couldn't find a plausible cause. Aside from wasting money on more doctor visits that will probably result in more of the same thing - nothing - I can write in here, where the ID guys like you do know quite a bit about CMV. Dave, every time I give up and just say "the hell with it, they can't find the problem" my friends and family tell me to snap out of it and get back on the case and find out what is destroying my body. So I am not just obligated to myself, I am obligated to them as well. And as much as helping me with this is not exactly your duty, believe me, writing in to someone like you has become one of my most viable options.
How Do I rule out candida, and what can I do about CMV even though I am not HIV positive? Please resist the instinctual reflex of saying that CMV is not a problem in HIV negative people - just suppose something else is allowing the CMV to thrive. This case calls for thinking outside the box - please.
Response from Dr. Wohl
You are right, we do get a lot of email from people without HIV infection but with a concern that they have some HIV-like illness. And, as you said, we don't like to answer these questions as it detracts from the objective of this forum. I have done quite a bit of research on CMV so I will respond to your questions.
CMV can cause disease in HIV-uninfected people. Most often it presents as a mononucleosis ('mono') type illness. In persons with other causes of immunosuppression, such as transplant receipients, CMV can lead to organ damage (i.e. pneumonia, colitis, etc).
You may not like to hear this but what you describe sounds nothing like acute CMV infection. In the US, the risk of having antibodies to CMV (meaning prior infection has occurred) is proportional to your age (for instance if you are 40 years old you have about a 40% chance of being CMV antibody positive). Now if you are a gay man that number rises to around 90% regardless of age.
CMV belongs in the herpes family of viruses and, like all herpes viruses, it sticks around forever even when it is not causing disease (just like the chickenpox virus). So again, antibodies don't mean you have disease. Additionally, wasting, thush, body shape change - these are not from CMV.
To answer your specific questions:
1) Oral thrush is a diagnosis that can be made clinically and confirmed by a swab of your lesions. Many people think that if their tongue is coated they have thrush - they don't. Thrush presents as white or very red patches on the inner cheeks or palette. The white kind scraps off pretty easily.
2) As above. I do not think CMV is causing your problems. In HIV+ folk it is not the culprit behind the HIV associated problems you are ascribing to it. In most (85%) people with HIV and CMV disease, their retinas are involved. If you are suffering from objective changes in your health and body, I agree, seeking an answer is completely warranted. But, from what you write, I don't think CMV is the answer.
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