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Ref. My Questionable HIV Diagnosis
Feb 27, 2010

Dr. Frascino, your response to my presentation regarding my recent diagnosis which I had found confusing and I was going to seek a second opinion/testing, came to me as quite poignant. You proved to me that indeed you are well informed and educated about HIV/AIDS condition. I did another test, and sure indeed it came out positive. It sure made sense to me now that I did not discontinue the Atripla therapy I started, after all the team of doctors at the University Hospital were quite right. Now I know I just have to live with the virus. It's rather unfortunate and heart-rendering. My concern now, I do not know whether I should undertake any international traveling again as I often undertake international consulting jobs. What are the implications with such a condition especially in terms of international travel? Will I be listed in an international database that could be used to prevent me from entering in a country with this condition? Do I always have to declare my condition in any forms I have to fill out, immigration forms, for instance, whenever I am required to for visa purposes? And what I am so anxious to know is more work actually on-going undertaken by infectious disease experts or NASA scientists to find the ultimate cure for HIV/AIDS? Is there any hope for us to eventually be provided with a cure? It is really terrifying and quite costly to live on Atripla therapy or any kind of HIV/AIDS therapy for the duration of one's mortal life. So the quickly we have the ultimate cure of this dreadful condition the better. I trust I will again benefit from your wisdom. Thanks for your help. Regards, Dan.

Response from Dr. Frascino

Hello again Dan,

I'm so glad I proved to you that I'm "well informed and educated about HIV/AIDS conditions" . It appears you have much to learn about HIV/AIDS. I suggest you begin with the section on HIV basics that can be easily accessed on The Body's homepage. It contains a chapter entitled "Just Diagnosed."

Regarding international travel, there are only a very few countries that still have travel restrictions for HIVers. President Obama lifted the travel ban for the U.S. last year. You will not be listed (or blacklisted) on any international databases.

Next, you wonder if any work is ongoing to find a cure. Dan, there are over 34,000,000 of us currently living with HIV. Of course there is ongoing research. I suggest you read through the chapter on cure in the archives of this forum. By the way, why would you expect "NASA scientists" to be working on a cure for HIV/AIDS? Chances are, Danny Boy, you're not a rocket scientist, right? If you were, you'd know that NASA stands for National Aeronautics and Space Administration!

It's also somewhat interesting to note that now that you have been confirmed HIV infected, you suddenly realize that a cure needs to be quickly found and that it's expensive to treat this condition. Danny, where have you been for the past 28 years? Time to wake up and smell the Atripla. Get informed and then start doing your part to inform others.

Good luck. I'm here if you need me.

Dr. Bob

Please read complete details of my recent HIV diagnosis Feb 21, 2010

Interesting developments and I am truly mystified. I was diagnosed with HIV about a month ago. I called the young lady in early 2008 whom I thought must have infected me. I called her urging her to test for the virus, she did. She called me back and her test came out NEGATIVE. Now my wife tested, on Saturday, February 13, 2010, again she tested NEGATIVE. This is puzzling. If the virus is transmitted by unprotected sex, my ex-date and my wife should definitely test positive, except science can come up with some other theories to explain this phenomenon. Clearly, I was very ill when I checked into the Emergency Room because I must had picked up bugs from the routine exercises I was engaged in doing 400/500 pushups 5 days a week with my bare hands on the dirt (with no gloves) (as I kept telling the team of doctors who attended to me). And the extreme cold conditions too must had contributed to the infection I had with my lungs. Besides, I waited 2 weeks when I really got in very bad shape and I was then having shortness of breath with any little effort when I finally decided to check into Emergency for help. But it seemed to me the team at the University Hospital already had fixed notions about my lung infection to be PCP related to the virus. Tons of my blood was drawn all in the effort of trying to prove what the team already had in mind since Friday night, Saturday and even Sunday. Even the sputum I provided was not conclusive. Because it was coming out negative of PCP, it was dismissed again and again that I was not coughing properly. Again, as I tried to explain to the team at the hospital, the CD4 count they said was extremely low (8) was not a definitive determinant of the virus as made clear by a University of California study I read. Many factors could cause such low blood count of 8, not necessarily the virus. Couple of days ago also, I saw a documentary on blood count on TV which more or less confirmed what the University of California study already talked about. Again, all the symptoms that the team emphasized on the nights sweats, the swellings, the rashes, the diarrhea, "getting worse before I get better" I did not experience any. With the lung infection taken care of with the right medication (Bactrim), which should have been the focus of the team, I am today as fit as a fiddle, breathing normally, and even started my exercise regime. The team also provided me with corrected reports of my viral load which they claimed was 145,000 copies. That to me, I should have been in full-blown AIDS condition with 145,000 VL. (1) Can some expert(s) please provide me with some insights about what is going on here based on these events I have outlined? (2) Why should my wife test NEGATIVE when for over the past 2 years I have had unprotected sex with her? (3) And why my ex-date tested NEGATIVE as well as she was the only suspect of having infected me with HIV if indeed I was infected sometime in 2008? One of the senior members of the team was even claiming that I have been infected 10 to 15 years ago. Of course, I tested NEGATIVE in 2002; also tested NEGAIVE in 2006. (4) Why is this doctor making such outrageous claims considering my previous tests? I am now considering a second opinion/test, hopefully to prove the team of doctors wrong. The team had already put me on Atripla therapy which I started about 2 weeks ago. (5) Is the team afraid of being sued/litigation (which I have no intention to do) if they had made the wrong diagnosis so they simply wanted to hold on to their pre-conceived notion about my condition? (6) What do you advise I do because I am confused and quite worried as to whether indeed I need the Atripla therapy on-going or not and what would be the side effects if indeed I did not have the virus? Please help me with some answers. Thanks for your help, Dan .

Response from Dr. Frascino

Hello Dan,

It's a bit difficult to piece your story together based on the limited information provided, but I'll try. Assuming you tested HIV-antibody positive with a confirmatory positive Western Blot last month ("I was diagnosed with HIV about a month ago . . ."), you have an elevated HIV plasma viral load (you repost you received "corrected reports" of your viral load, but failed to tell me what they showed), your CD4 count was "extremely low" (8), and your pneumonia responded to Bactrim, here's the way I would put your story together.

1. You have AIDS, based on a positive confirmed HIV antibody tests, elevated PCR viral load and a CD4 count less than 200.

2. Your recent pneumonia was most likely PCP, based on your CD4 count and the response to Bactrim.

3. Most individuals with AIDS complicated by a severe opportunistic infection have been infected for a significant period of time (10 years); however, there are cases of much more rapid progression depending on viral strain, host immune integrity and other issues. If indeed you tested negative in 2006, you would have had to contract the virus sometime after that.

4. That neither your "young lady" from 2008 nor your wife has tested HIV positive, despite having unprotected sex with you, is quite easily explained scientifically! Many (in fact most!) HIV exposures do not lead to HIV transmission! The young lady and your wife were, in essence, lucky! Your wife will need repeat testing at the three- and six-month marks, from the date of last exposure, to be confirmed HIV negative.

5. If you want a second opinion, by all means get one. Just make sure the physician is a certified HIV physician specialist. (See below.) Also, continue to take your Atripla, pending the results of the second opinion. My guess is that you need it!

Write back with the results of your second opinion Dan, and I'll post your update for our readers.

Good luck.

Dr. Bob

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

Hello,

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.

Dr. Bob

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

Hello,

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!

Dr. Bob

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

Hello,

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?

Dr. Bob

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

Hi,

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.

Good luck.

Dr. Bob

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.

Availability

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.

Confidentiality

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.

Changing Providers

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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