worried about me and my son
Mar 22, 2010
dear doc, god bless you.you are doing a great job.
i am poz.diagnosed after i delivered my son.doctors incorrectly declared me hiv negative while regular pregnancy checkups.when i donated cord blood ,the company i donated to informed me my actual status after 2 mths of the delivery..i immidiately stopped feeding him.i have got my son tested (PCR) once and the status is again positive.me and my husband are denying the report and beleive it to be false.we are waiting for our son to turn 18 months to get the actual status as per our knwoledge maternal antibodies in the baby may give false report..he is gaining weight and active normal baby.he is 15 months now. Q Are we fooling ourself or there are chances of good news and what should we do if the report is not good even after 18 mnths?is there anything specifically done for such young babies?
now about me.i had herpes 2 years back.and now when i recollect i had fever and swollen lymphnodes behind my neck 4-5 years back.now i get vaginal itching and recentlly i have incosistent pain underarms.also though i had stopped feeding my son when i got the news ie after 2mnths of delivery now after a year i noticed a whitish yellow drop from my nipple on squeezing. Q why is there pain underarms?what should i do? Q should i start hiv treatment? Q what kind of doctor should i go to for painunderarms and nipple discharge? Q what should i do for me and my son?please help.
Response from Dr. Frascino
First, regarding your missed diagnosis during pregnancy, this is a very serious oversight that may well have catastrophic consequences. It's possible you may well have a valid malpractice case against your obstetrician who "declared (you) HIV negative during regular pregnancy checkups." It may be worth consulting a lawyer in this regard. Turning to your son, I agree you should rely on the eighteen-month HIV-antibody test for a definitive determination of his HIV status. The detectable PCR is indeed worrisome, as neither quantitative PCR RNA nor qualitative PCR proviral DNA relies on antibodies. Rather, they detect a piece of the virus's genetic material. Is there a chance the PCR was wrong? Yes, false-positive PCR tests can and do occur. If your son is indeed HIV infected, he should be seen by an HIV pediatric physician specialist. Yes, there is much that can be done for HIV-positive infants, including taking antiretrovirals in liquid form.
Responding to your specific questions:
1. I cannot diagnose medical conditions over the Internet without the benefit of reviewing your medical history and laboratory studies and without performing a physical examination. I suggest you have an HIV specialist evaluate these concerns.
3. Your HIV specialist physician should be able to evaluate these problems for you.
4. The most important thing to do is establish a close working relationship with an HIV specialist. See below.
just tested positive (CHOOSING AN HIV SPECIALIST 2010) Jan 25, 2010
iknow i got infected on jan 5th 2009,three weeks after that a had a throat infection.3-4 months after that i develop a lympnode in my neck,both side,arm pit,groin area.8- 9 months after that had a slight night sweat which goes on and off. till date after testing positive i have not done any test to see if i need medication. in how much danger am i putting myself
Response from Dr. Frascino
Without more sophisticated testing (CD4 cell count, HIV plasma viral load, etc.), it's impossible for me to ascertain how much damage has been done to your immune system. Close clinical monitoring and routine laboratory assessments are strongly recommended for all HIVers. What are you waiting for? I urge you to establish care with an HIV specialist physician without further delay. Your health and well being are at stake. See below.
HIV Positive and pregnant (CHOOSING AN HIV SPECIALIST 2009) Nov 2, 2009
I tested positive in 2006 and haven't gone for any check up's to check my cd4 count and now I'm pregnant and still afraid to go for a check up. My husband is also positive and we still have sex without a condom, what are the chances that our baby will be infected, when do i start taking medication to prevent my baby from being infected and is it safe to take arv's when you are pregnant because i hear you sometimes get sick when you take them for the very first time?
Response from Dr. Frascino
I find it terribly unfortunate and a bit sad that fear has prevented you from getting appropriate monitoring and treatment for your HIV disease. I hope you realize that by not getting the care you need, you are allowing the virus to replicate unchecked in your body and in turn slowly destroy your immune system. It is imperative that you establish care with an HIV specialist physician and HIV-knowledgeable obstetrician immediately. Certain antiretroviral medications can be taken during pregnancy and they significantly decrease the risk of mother-to-child HIV transmission. Without treatment, the chances your child will be HIV infected will be dramatically increased. Also, if you don't get appropriate care and treatment, the chances you'll be around to see your child grow up are slim to none. I can tell you if I had been too afraid to get treatment when I became HIV infected in January 1991, I wouldn't be here today to respond to your question.
I'll reprint some information below about finding an HIV specialist.
Good luck. Don't let fear keep you from getting the care you need!
Just found out... (CHOOSING AN HIV SPECIALIST) Sep 20, 2008
Well, doc, the feelings came and went and I got the nerve to test. It was positive... I don't know what to do now and I don't even know if I have long left cause of how bad I had the ARS and weight loss...
I want to live... I want to live a long happy life... I live in Texas, am I screwed? I'm a student in a grad school, so I'm poor, but what can I do? How do I move forward?
Response from Dr. Frascino
Only those of us who have been through it really understand the full impact of hearing the words "your test came back positive." Many of us feel scared, wondering if we will soon get sick or die. We fear that we will be shunned, lose our jobs or maybe our housing; that we won't be able to have children; that we'll never be able to date, get married or have sex again. None of these things are, in reality, true.
The virus found me while I was working over 17 years ago! Back then, the prognosis for HIVers was about 10 years max. We've made remarkable, in fact miraculous, improvements in treatment of HIV/AIDS, which have dramatically decreased both morbidity (illness) and mortality (death) as demonstrated by the fact I'm still here answering your question rather than pushing up daisies. It is true we do not have a cure, but for many of those lucky enough to have access to antiretrovirals and expert (or at least competent) HIV medical care, "virally-enhanced," healthy and fulfilling lives are truly attainable. Here in the U.S., even for those who don't have or can't afford private health insurance (this includes undocumented immigrants, by the way), it is possible to get quality HIV care and support in most areas of the country.
Now that you know you are HIV positive, I would recommend two simple first steps:
1. Consult an HIV specialist. She will be able to assess the severity of your HIV disease and also help you access the health care system based on your health insurance or lack thereof. To locate an HIV specialist in your area, check the American Academy of HIV Medicine's Web site at www.aahivm.org. There you will find a roster of certified HIV specialists listed by locale. (I'll also print some information below from the archives that discusses choosing an HIV specialist.)
2. Get informed! Learn as much as you can about HIV and its treatments. This Web site is an excellent place to accomplish that. Begin by reviewing the information in the "Just Diagnosed" chapter that can be easily accessed on The Body's homepage under the Quick Links heading. Start with the articles found under the "Just Diagnosed Basics" subheading.
Finally, as far as living in Texas, well, yeah, that kinda sucks, but it really shouldn't impact negatively on your HIV disease.
Start learning more about HIV and get evaluated by an HIV specialist. I'm here if you need me. Let's get through this together, OK?
Need a Private doctor Aug 14, 2008
I am HIV Positive living in Seattle area. I currently don't have one and i am looking urgently in a private clinic? Do you know a good one? I asked this question earlier & was told about Peter Shalit who is fully booked until end of year. Please let me know if you have a good one in mind. Thank You.
Response from Dr. Frascino
I would suggest you consult the American Academy of HIV Medicine Web site (www.aahivm.org). There you will find a list of certified HIV specialists arranged by locale. There are a number of well-qualified HIV specialists in the Seattle area. Be sure you hook up with one that you trust and with whom you can easily communicate. Your health insurance plan may have some restrictions, so remember to check this out as well. I'll repost some information below from the archives pertaining to locating an HIV specialist.
Choosing an HIV Care Provider
July 18, 2007
Why Is Choosing an HIV Care Provider Important?
Treating HIV disease is very complicated. There are choices to consider at every stage of the disease. It's best if you and your health care provider work together as a team. That makes it easier to choose and stick to your treatment plan. "Care provider" means a doctor, a physician's assistant, or a nurse practitioner.
There are several issues you may want to consider in choosing an HIV care provider. You might decide to have them be your "regular doctor" for all of your health issues. You might use a different care provider for most health issues and use your HIV provider as a specialist. If your regular provider isn't an HIV specialist, be sure they regularly get expert advice on HIV issues.
Training and Experience
Many people with HIV/AIDS get their care from physicians who are specialists in infectious diseases. However, especially now that people are living longer with HIV, it's important to deal with all of your health issues. You might prefer to have a family practitioner or a specialist in internal medicine as your primary physician.
No matter what their specialty, you will get better HIV care from providers who have experience treating people at all stages of HIV disease. Be sure to ask how many patients with HIV they have treated, and how many they currently see. HIV patients do better when their physicians have more experience treating HIV disease.
Do You Have Similar Ideas About Treating HIV?
Some providers are conservative. They prefer "tried and true" methods. Others are more aggressive. They are willing to try new and experimental treatments. Some are optimistic by nature, and focus on the hopeful or positive side when they talk about test results or future prospects. Others are more realistic. Some are pessimistic.
Some providers are comfortable suggesting "complementary and alternative" therapies such as massage, acupuncture, or herbs. Others stick strictly to Western medicine.
If you want a lot of emotional support, you probably won't be comfortable with a health care provider who only talks about test results. The more comfortable you are with their approach to HIV treatments, the easier it will be for you to get the kind of health care you want. Talk to providers and their patients before you make your choice.
The Provider-Patient Relationship
Many patients do better when they take an active role in planning their own health care. These patients do a lot of reading on their own, and bring information to their providers. They work together to make health care decisions.
Other patients are more comfortable with the provider making important decisions. Decide how you want to work with your provider. See if that fits with the way the provider likes to work with patients.
Help Your Provider Help You
Make sure that your provider has all the information needed to give the best advice about your treatment. This starts with your medical records, which may have to be transferred from another office. When you start working with a new provider, they will probably do a lot of tests to collect "baseline" information. This helps you see how well you're doing as time goes by.
Be sure your provider knows how you feel about using medications, and about your illness. Some people don't mind taking a lot of pills. Other people would rather take as few as possible. Are you willing to change your diet, or the amnount of exercise you do? Your provider should also know about other treatments you are using or want to try, including non-medical ones.
Be honest about your lifestyle. Your eating, sleeping, and work patterns can make a difference for your health care. So can your sexual practices and use of recreational drugs. If your provider seems too judgmental, try to change providers. It's better to have a provider who really knows you instead of holding back information.
Let your provider know about the important people in your life: the people who will support you if you get sick, or will help you make important medical decisions.
The best care provider won't do you any good if you can't get in to see them. Ask them (or their receptionist) how long it usually takes to get an appointment. Find out how well they usually stay on schedule during the day.
The type of insurance you have could limit your choice of a provider. Maybe the provider isn't on the list for your health maintenance organization (HMO) or insurance plan. Be sure to find out how you will be able to pay for their services.
Remember, you don't need an HIV specialist to help you with most of your health care needs. If a good HIV provider is hard to find, or if it's hard to get an appointment, use a non-HIV care provider for your general health care. Just be sure that when you are dealing with HIV issues, you see an experienced HIV provider, or one who consults with an expert in HIV.
Some people are very concerned about keeping their HIV status private. You might choose to get your HIV care from a provider in another town to protect your privacy. You will need to find your own balance between confidentiality and convenience.
Your health care needs might change as time goes by. Also, your ideas about treatment could change. Although you will probably get better medical care from a provider who has known you for a long time, you always have the right to stop seeing one provider and change to another.
To Find a Health Care Provider ...
You can get help finding a care provider from your case manager or from your local Department of Health. You can also ask other people living with HIV. The American Academy of HIV Medicine has a web page to help you find a doctor at http://aahivm.org/web/index.php?option= com_comprofiler&task=usersList.
The Bottom Line
HIV medical care is very complicated, and changes quickly. This makes it important to find an HIV care provider who works with HIV/AIDS patients and is committed to staying up to date. Your relationship with an HIV provider will be better if you are comfortable with each other's personal style and approach to dealing with health issues in general, and HIV in particular.
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