|how to find informaiton reguarding aids
May 16, 2008
My friend has aids, his t cell is 13 he was just released from icu after 6 weeks of battling pcp pnemonia. He now is in a long term care still on oxygen not through his trach anymore only through the nose. They want to start HIV meds now. His liver count is 60. He actually is beating the odds. I understand that when you start the meds it can through you back is this true? They want to put him on sustiva 600 mg emtriva 200mg viread 300mg all these nightly. After all the nightmares these past two months we don't know who to believe and we are trying to be advocates for him. How do I find an aids specialist or someone to consult with our Dr that is treating him. He is at Kindred care in Folsom Ca as far as I know, I don't think they are experts in the field of AIDS. Can you recommend someone for me to consult with so I can help him get the best possible treatment. THank you JB
Response from Dr. Frascino
Sorry to hear your friend has been having such a rough time. It would be wonderful if all AIDS patients had advocate friends like you! To answer your primary question about how to locate an HIV/AIDS specialist in your area, I would suggest you consider the American Academy of HIV Medicine's Web site, www.aahivm.org. They have a "find a provider" function that lists HIV/AIDS specialists by locale. I'll reprint some information from the archives about choosing an HIV care provider. (See below.)
As for your other question, there is no doubt your friend should be started on antiretroviral medications as soon as he is able to tolerate them. We would recommend he get a resistance test first to see if his particular viral strain is sensitive or resistant to the various antiretroviral drugs available. If he is not resistant to Sustiva, Emtriva and Viread, this would be a reasonable combination for him to be started on. It is both a potent and convenient regimen. As with many HIV medications, side effects are relatively common, but generally tolerable. Sustiva, for instance, can cause vivid dreams. You can read about the various medications and their potential side effects in the archives. Despite potential side effects; however, there is no doubt your friend should begin treatment. Particularly when one considers his current condition the potential upside of these drugs is far, far greater than the potential downside.
Good luck to you and your friend. I'm here if you need me, OK?
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 HIV Medicine Association has a similar resource at www.idsociety.org/HIVMA_Template.cfm? Section=Find_a_Provider_in_Your_Area.
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.
22 Years old, infected and scared.
Coed got her WAHOOO!!!
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