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Moving Forward
Aug 8, 2009

I was diagnosed with HIV 10yrs ago as of November of this year. I was pregnant with my daughter at the time. I have just turned 30yrs old in July and recently moved to another state just to get my head together. I have always been on and off medications sometimes Dr. recommendations then sometimes not. I have really never faced the reality of being positive however it has been very hard to get proper treatment when all it seems the Dr. would do is throw me on a pill and leave it at that. I have a hard time feeling as if that is all it takes for someone with HIV to live a longer, healthier life. I don't have money so I don't know how to seek more help when I am limited on the type of care is available to me. It seems that everyone in my experience has always passed the buck and all I have is just alot of prescriptions under my bed. I know that I am responsible for my own health but mentally I have not a clue how to begin taking control. I know I have a daughter to live for but I am barely living for myself. I don't leave my house at this point, I smoke, and I am just plain depressed. I feel like I am tired of trying and picking myself up again and again. I have no support, no family , its just me and my daughter. I feel like I isolated myself because I wanted to just die in peace without all the whispers of those who instead of supporting me used me as there daily gossip when I trusted them with something so sensitive to me. I have no one to turn to. I have a doctor but he acted as if he didn't even know how to read my Labs. I need help fast or I fear that I will not make it long. I know there is a good life for me to live I just need an angel to guide me to it. Please I need someone. I am tired and I can't live like this anymore. I am admitting today that I am scared and don't want to live like I am dead any longer. Thank You in advance for your advice

Response from Dr. Frascino

Hello,

You have two problems and both of them require medical attention:

1. Clinical Depression. I have no doubt from your post that you are clinically very depressed: "I don't leave my house at this point . . . I am just plain depressed . . . I am tired of trying . . . I have no support, no family . . . I feel like I isolated myself . . . I have no one to turn to . . ." etc. I strongly urge you to seek evaluation and treatment for your depression. Psychotherapy and/or antidepressant medications can be extremely helpful. Treating your depression is the first step to regaining control of your life as well as your physical and psychological well-being.

2. HIV disease. Having been "on and off medications" and "really never facing the reality of being positive" suggests your treatment for HIV has been less than optimal to say the least. You need to find an HIV specialist whom you trust and who is willing to work closely with you. HIV specialists should do much more than just dispense prescriptions! I'll post some information below from the archives that discusses how to choose an HIV specialist physician.

You don't need an "angel;" rather you need a good therapist and HIV specialist, OK?

One last thing: I would also urge you to quit smoking. It's particularly harmful for HIVers.

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

Dr. Bob

Just moved to SF May 2, 2009

Hi, I am 1 year into being HIV+ and just moved to SF from Sacramento, where I had been receiving care at CARES and also at the VA (I am a Navy vet). I am finding it difficult to find a new HIV doc in SF and would love some help. I did not like the care I received at CARES and would prefer a private practice environment vs. a clinic. Any suggestions? I am not currently on any meds. My last counts (March) were VL 16549 and CD4 387.

Any help is appreciated - I am feeling a bit overwhelmed here, and also a bit concerned with my last counts.

John

Response from Dr. Frascino

Hi John,

There are many excellent HIV specialists in San Francisco, although I realize due to the ever increasing load of newly diagnosed patients some practices have had to limit the number of new patients accepted. I would suggest you check the HIV specialist roster on the Academy of HIV Medicine's Web site (www.aahivm.org). (If you are right in the city, you could try Lisa Capaldini, M.D.) If push comes to shove (or if you live a bit south), you're always welcome at the Frascino Medical Group in Los Altos. I'll repost some information about finding an HIV specialist below. Good luck.

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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