Aids/HIV information, Symptoms, treatment

 Your doctor should help you bring together the different parts of your health care to make sure all your medical needs are met. If you’ve been seeing the same doctor for years and have a good relationship with him or her, you may not need to change doctors when you learn you are HIV positive.

 But if he or she has very little experience with HIV/AIDS or seems prejudiced, you may decide to find someone who is more accepting or knows more. This may not be easy, especially if you live in a rural area and have a limited number of doctors to choose from. 

Finding a doctor 

Your relationship with your doctor is important. You need to feel comfortable with him or her. A doctor who has experience in working with people living with HIV/AIDS is sometimes referred to as an HIV primary care physician. In some big cities, primary care physicians have formed networks in order to share information. Your nearest AIDS group can refer you to a such a doctor if there is one available in your area. One way to find a doctor who knows something about HIV is to talk with other people who are HIV positive. Ask them who they go to and whether they’re happy with the care they’re getting. Get three or four names and shop around; talk with doctors to see whether they have the qualities that are important to you.Ask yourself what type of doctor you want. Do you want one who tells you what to do (which may make you feel secure), or one who will work with you in weighing the pros and cons of a treatment? Do you want a doctor who will help you explore alternative treatments? Do you want a female doctor? Do you want a gay doctor? Do you want a doctor who can speak with you in your first language? Who has experience working with interpreters? Who is sensitive to your cultural and spiritual beliefs? Do you want someone close to home? Someone who has experience with drug users?Answering these questions can help you decide which doctor is right for you. But you may not have any choice, especially if you live in a rural or remote area. You may have to help educate your doctor if he or she is new to HIV/AIDS. The checklist in Chapter 12 can be helpful in discussing your health with your doctor. You can also suggest that he or she get in touch with one of the HIV mentoring programs offered in several provinces. These programs allow doctors who are new to HIV/AIDS to work with more experienced doctors in order to increase their understanding. Your first appointment with a new doctor There are some things you can do to prepare for your first appointment:Make an appointment to talk with the doctor. Make sure you will have enough time to get to know the doctor and give the doctor a sense of your medical history and current state of health. Make notes about the questions that you want to ask during your visit. If you’re nervous, or worried that there may be too much information to remember, you can make a list, or take a friend along to help you keep track.  After the appointment, ask yourself:Was I given enough time? Did the doctor give me a chance to ask questions? Did he or she answer them in a way I could understand? Was he or she knowledgeable about HIV/AIDS? Was he or she willing to learn? Did he or she listen to what I had to say about my specific conditions or situation? Is he or she knowledgeable about the conditions specific to people in my situation (drug users, women)? Is he or she willing to try different approaches to treatment? Is he or she willing to work with me as a partner in my health care? Did he or she seem to be prejudiced against me in any way? Did I feel comfortable with this doctor? Was he or she friendly? One visit doesn’t commit you to a relationship. If you have some worries, you may want to shop around some more.Once you have chosen a doctor, arrange to have your last one pass on your medical records. This will give your doctor a better idea of your history. Sometimes it costs money to have documents transferred. There is no standard fee; your doctor determines the cost based on the amount of paperwork and photocopying. However, you can expect to pay around $25 for a simple chart transfer.You will also need to make an appointment for a complete physical exam. Complete exams usually take about 45 minutes. This will give your doctor a picture of the state of your health right now. This is called a baseline. It will be used to compare with how you’re doing later. What you can expect from your doctor You have the right to be treated with dignity and respect. Your concerns should be taken seriously, whether they’re HIV-related or not. You have the right to hope. Your doctor should be encouraging and should keep your well-being in mind. You have the right to ask questions. Your doctor should be willing to answer any questions you might have in a manner which is understandable to you. He or she should not respond defensively when you ask challenging questions. You have the right to honesty. Your doctor should be willing to explain what your symptoms mean, what the lab tests say, and whether treatments are working. If your doctor can’t treat something, he or she should be willing to say so, and perhaps refer you to a specialist. You have the right to get a second opinion. You have the right to confidentiality. Your doctor should keep your medical information completely confidential (private). Whether or not your doctor is required by law to report your HIV status to the ministry or department of health varies from place to place; so does whether those laws are enforced. This means that, depending on where you live, even though you may have tested anonymously (in a way that is supposed to protect your privacy), your doctor could report your HIV status. Ask your doctor how he or she will ensure confidentiality. If you’re not satisfied with the answer, think about finding another doctor. In general, your doctor must get your permission before he or she gives out any information to your partner, family, insurance company, or employer. But if your doctor thinks you’re putting a sexual partner at risk and you refuse to tell that partner, he or she may inform the partner or report the situation to public health authorities, after telling you of his or her intention.You have the right to up-to-date, balanced information. Your doctor should be willing to tell you about both the good and bad effects of treatments. It’s difficult even for excellent doctors to stay on top of everything. Your doctor should be open to new information. You have the right to accept or refuse any treatment. Your doctor should respect your wishes, although he or she doesn’t have to give you a treatment that he or she feels may be harmful or worthless. Your doctor should respect your right to see other health professionals, including complementary or alternative practitioners. In some circumstances, refusing a treatment can affect whether or not you can get private insurance. You have the right to your doctor’s full attention. A regular appointment lasts between fifteen and 30 minutes. Book more time if you need it for specific tests, etc. Your doctor should take all your concerns seriously. He or she should actually do a check-up before prescribing treatment. (It’s not enough just to hear you describe your symptoms.) Your doctor should complete all forms for lab tests, prescriptions, and referrals to other agencies (such as welfare, housing, or disability insurance). You have the right to get important news from your doctor in person. Nobody should ever get their HIV results or the results of immune tests, or other serious tests, over the phone. Nurses, receptionists, and lab technicians don’t usually discuss this information with you. However, some community-based health clinics have nurses or counsellors who are trained to do this.What your doctor can expect from you Your doctor is a human being like you and deserves to be treated with the same dignity and respect that you deserve. Be honest - don’t keep information from him or her about new or complementary treatments you may be trying, any treatment that you stop, or anything you do that might affect your treatment plan. Your doctor can look into possible drug interactions (ways that different drugs you’re taking can affect you in combination with each other) and sudden improvements in or deterioration of your health. If you don’t feel you can be honest with your doctor, consider changing doctors, if possible.Try to understand that your doctor may have bad days occasionally. And there is a limit to what your doctor can do for you.  Making the most of your appointmentsHere are a few things you can do to get the most out of doctors’ appointments:Prepare for appointments. Write down key questions ahead of time. Decide what you want to talk about. Think about what decisions need to be made first. If possible, bring along written materials about any new treatment you want to ask about. Make a list of any symptoms, or changes in your health since your last visit, which you want checked. You may want to keep a medical diary. Make sure you understand what your doctor is testing or treating you for. How accurate are the tests? What are the side effects of each drug or treatment? If the treatment doesn’t work, what are the alternatives? Keep a written list of all the medications you’re taking. This includes drugs, vitamins, minerals, and herbal remedies. Some medications can interact (react with each other) in bad ways. You can help your doctor watch out for this by bringing along a list every time you see him or her. Keep a list of all the instructions your doctor gives you. If your doctor wants you to go for blood tests or X-rays, write that down. Find out whether there’s anything you need to do to prepare for a test. If your doctor suggests that you stop taking a medication for a period of time, make a note of it. Make sure you understand your doctor’s instructions. At the end of the appointment, go over what your doctor wants you to do: Make another appointment? Get some lab tests done? Call a specialist for an appointment? Change your diet? Decrease the amount of a particular medication you’re taking? Learn about HIV and your immune system. Reading the latest issue of TreatmentUpdate/Traitementsida (a publication of the Community AIDS Treatment Information Exchange) or other treatment publications and newsletters can help you stay on top of things. The more informed you are, the better able you’ll be to make decisions about your health care. Don’t diagnose yourself; different infections can cause similar symptoms, so always talk to your doctor. Keep appointments and get tests done even if you don’t feel sick. Regular appointments and tests will give you a clearer picture of your health and a better chance of getting illnesses or infections treated early on

Obstetricians (doctors who specialize in the care of pregnant women) who have experience with HIV/AIDS can best help you deal with your pregnancy and delivery, and with the care of your new baby. They should be aware of the symptoms of HIV/AIDS in women. Also, they can give you information about pregnancy and your health.

Some doctors may advise you against pregnancy due to your health or to the risk of passing on HIV to your child. You may want to discuss these issues with someone you trust. Your nearest AIDS group may be able to put you in touch with other HIV-positive women who have given birth. The decision of whether or not to have a child is yours.

If you live in a big city, your doctor may refer you to a clinic or centre at a nearby hospital with a special focus on HIV/AIDS. These clinics primarily provide medical care during the day to people living at home (”outpatients”).

HIV clinics don’t take the place of your own doctor, who should keep looking after you and help coordinate your contacts with the rest of the medical system. HIV clinics are often attached to “teaching” hospitals. These hospitals train medical students (interns) and resident doctors who may be involved in your care, so you may not be seeing the same doctor all the time.

HIV clinics can give information and follow-up care to people who have HIV. Their services may include counselling and support as well as keeping track of your health. Often they have people who specialize in medicine, psychology, social work, psychiatry, nutrition, or nursing. You may not need all of these services, but you can ask for a referral when you do need one of them.

HIV clinics are usually run by a specialist in infectious diseases or immunology (the study of the immune system). Because they are connected to hospitals, HIV clinics can help you get other hospital services. For example, if you need a blood transfusion or IV medication (IV means intravenous, or injected directly into a vein), this can often be done at the clinic or elsewhere in the hospital. You don’t have to stay overnight in the hospital to get most kinds of medical care.

Doctors who work in HIV clinics are often involved in studies of new drugs to treat HIV or the infections that people living with HIV can get. Chapter 9 talks about how clinical trials (drug studies) are done. If you want to join one of these studies, you may be able to sign up through an HIV clinic. Some primary care physicians are also involved in clinical trials.

 HIV clinics don’t provide emergency services. They usually have limited hours. And they can be very busy, so you may have to wait a while to get an appointment.

   Aromatherapy is a unique branch of herbal medicine that uses the medicinal properties found in the essential oils of various plants. The oils are extracted from flowers, leaves, branches or roots, either through a process of steam distillation or cold-pressing. Essential oils can be applied directly to either an infection, or inhaled (breathed in).

Complementary therapists or practitioners are people trained to use forms of treatment that are different from conventional medical care. Only a few complementary therapists see large numbers of people living with HIV/AIDS. Outside of big cities, it may be difficult to find such a therapist. You may already have some idea of how a particular complementary therapy works, but it’s useful to consult with the therapist about his or her philosophy and practice.

 As with doctors, shop around.The following questions may help you choose a therapist:What is the treatment being offered, and how can it benefit you? What is the therapist’s experience in treating people living with HIV/AIDS? What experience and training does he or she have in diagnosing HIV/AIDS-related illnesses? What qualifications does he or she have? How can the treatment be combined with conventional medicine? How much does he or she charge? Does he or she charge on a “sliding scale” (offer a reduced rate if you can’t afford his or her regular fees)? Are other costs involved? (Some private insurance policies cover a percentage of the costs of some complementary therapies.) Is he or she prepared to visit you at home or in the hospital if necessary?

Any claim that a treatment can cure AIDS or an AIDS-related infection completely, or change your HIV status from positive to negative, should make you cautious. If you’re not sure about a particular therapy or therapist, try to contact someone who has had that therapy or been treated by that therapist.

If you have gynecological (related to women’s reproductive organs) problems that your doctor can’t treat, it’s important to try to find a gynecologist (a doctor who specializes in this area) who knows about HIV/AIDS, because several of the gynecological symptoms related to HIV/AIDS may not be as quickly diagnosed and treated by a doctor or gynecologist unfamiliar with HIV/AIDS. Click here for more discussion of symptoms specific to women

Taking care of your mouth is important, because being HIV positive can increase the risk of cavities and of inflammation (redness, swelling, or irritation) of your gums and damage to the bones that support your teeth. Certain problems related to HIV/AIDS, such as thrush, can also appear in your mouth. For these reasons it is useful to let your dentist know you’re HIV positive, if you feel comfortable telling him or her.

Some dentists may not accept you as a client due to your HIV status. If possible, see a dentist who has experience with HIV/AIDS. Other people living with HIV/AIDS, or your nearest AIDS group, may be able to recommend a dentist. Have a check-up every six months, if you can.

Your doctor should help you bring together the different parts of your health care to make sure all your medical needs are met. If you’ve been seeing the same doctor for years and have a good relationship with him or her, you may not need to change doctors when you learn you are HIV positive. But if he or she has very little experience with HIV/AIDS or seems prejudiced, you may decide to find someone who is more accepting or knows more. This may not be easy, especially if you live in a rural area and have a limited number of doctors to choose from. 

Finding a doctor

Your relationship with your doctor is important. You need to feel comfortable with him or her. A doctor who has experience in working with people living with HIV/AIDS is sometimes referred to as an HIV primary care physician. In some big cities, primary care physicians have formed networks in order to share information. Your nearest AIDS group can refer you to a such a doctor if there is one available in your area. One way to find a doctor who knows something about HIV is to talk with other people who are HIV positive. Ask them who they go to and whether they’re happy with the care they’re getting. Get three or four names and shop around; talk with doctors to see whether they have the qualities that are important to you.

Ask yourself what type of doctor you want. Do you want one who tells you what to do (which may make you feel secure), or one who will work with you in weighing the pros and cons of a treatment? Do you want a doctor who will help you explore alternative treatments? Do you want a female doctor? Do you want a gay doctor? Do you want a doctor who can speak with you in your first language? Who has experience working with interpreters? Who is sensitive to your cultural and spiritual beliefs? Do you want someone close to home? Someone who has experience with drug users?

 Answering these questions can help you decide which doctor is right for you. But you may not have any choice, especially if you live in a rural or remote area. You may have to help educate your doctor if he or she is new to HIV/AIDS. The checklist in Chapter 12 can be helpful in discussing your health with your doctor. You can also suggest that he or she get in touch with one of the HIV mentoring programs offered in several provinces. These programs allow doctors who are new to HIV/AIDS to work with more experienced doctors in order to increase their understanding.

 Your first appointment with a new doctor There are some things you can do to prepare for your first appointment:

Make an appointment to talk with the doctor. Make sure you will have enough time to get to know the doctor and give the doctor a sense of your medical history and current state of health.

Make notes about the questions that you want to ask during your visit. If you’re nervous, or worried that there may be too much information to remember, you can make a list, or take a friend along to help you keep track.  After the appointment, ask yourself:Was I given enough time? Did the doctor give me a chance to ask questions? Did he or she answer them in a way I could understand? Was he or she knowledgeable about HIV/AIDS? Was he or she willing to learn? Did he or she listen to what I had to say about my specific conditions or situation? Is he or she knowledgeable about the conditions specific to people in my situation (drug users, women)? Is he or she willing to try different approaches to treatment? Is he or she willing to work with me as a partner in my health care? Did he or she seem to be prejudiced against me in any way? Did I feel comfortable with this doctor? Was he or she friendly? One visit doesn’t commit you to a relationship.

If you have some worries, you may want to shop around some more.Once you have chosen a doctor, arrange to have your last one pass on your medical records. This will give your doctor a better idea of your history. Sometimes it costs money to have documents transferred. There is no standard fee; your doctor determines the cost based on the amount of paperwork and photocopying. However, you can expect to pay around $25 for a simple chart transfer.You will also need to make an appointment for a complete physical exam. Complete exams usually take about 45 minutes. This will give your doctor a picture of the state of your health right now. This is called a baseline. It will be used to compare with how you’re doing later.  What you can expect from your doctor You have the right to be treated with dignity and respect. Your concerns should be taken seriously, whether they’re HIV-related or not.

You have the right to hope. Your doctor should be encouraging and should keep your well-being in mind.  

You have the right to ask questions. Your doctor should be willing to answer any questions you might have in a manner which is understandable to you. He or she should not respond defensively when you ask challenging questions.

You have the right to honesty. Your doctor should be willing to explain what your symptoms mean, what the lab tests say, and whether treatments are working. If your doctor can’t treat something, he or she should be willing to say so, and perhaps refer you to a specialist.

 You have the right to get a second opinion. You have the right to confidentiality. Your doctor should keep your medical information completely confidential (private). Whether or not your doctor is required by law to report your HIV status to the ministry or department of health varies from place to place; so does whether those laws are enforced. This means that, depending on where you live, even though you may have tested anonymously (in a way that is supposed to protect your privacy), your doctor could report your HIV status. Ask your doctor how he or she will ensure confidentiality. If you’re not satisfied with the answer, think about finding another doctor. In general, your doctor must get your permission before he or she gives out any information to your partner, family, insurance company, or employer. But if your doctor thinks you’re putting a sexual partner at risk and you refuse to tell that partner, he or she may inform the partner or report the situation to public health authorities, after telling you of his or her intention.

You have the right to up-to-date, balanced information. Your doctor should be willing to tell you about both the good and bad effects of treatments. It’s difficult even for excellent doctors to stay on top of everything. Your doctor should be open to new information.

You have the right to accept or refuse any treatment. Your doctor should respect your wishes, although he or she doesn’t have to give you a treatment that he or she feels may be harmful or worthless. Your doctor should respect your right to see other health professionals, including complementary or alternative practitioners. In some circumstances, refusing a treatment can affect whether or not you can get private insurance.

You have the right to your doctor’s full attention. A regular appointment lasts between fifteen and 30 minutes. Book more time if you need it for specific tests, etc. Your doctor should take all your concerns seriously. He or she should actually do a check-up before prescribing treatment. (It’s not enough just to hear you describe your symptoms.) Your doctor should complete all forms for lab tests, prescriptions, and referrals to other agencies (such as welfare, housing, or disability insurance).

 You have the right to get important news from your doctor in person. Nobody should ever get their HIV results or the results of immune tests, or other serious tests, over the phone. Nurses, receptionists, and lab technicians don’t usually discuss this information with you. However, some community-based health clinics have nurses or counsellors who are trained to do this.

What your doctor can expect from you Your doctor is a human being like you and deserves to be treated with the same dignity and respect that you deserve. Be honest - don’t keep information from him or her about new or complementary treatments you may be trying, any treatment that you stop, or anything you do that might affect your treatment plan. Your doctor can look into possible drug interactions (ways that different drugs you’re taking can affect you in combination with each other) and sudden improvements in or deterioration of your health. If you don’t feel you can be honest with your doctor, consider changing doctors, if possible.Try to understand that your doctor may have bad days occasionally. And there is a limit to what your doctor can do for you.  

Making the most of your appointmentsHere are a few things you can do to get the most out of doctors’ appointments:

Prepare for appointments. Write down key questions ahead of time. Decide what you want to talk about. Think about what decisions need to be made first. If possible, bring along written materials about any new treatment you want to ask about. Make a list of any symptoms, or changes in your health since your last visit, which you want checked. You may want to keep a medical diary.

Make sure you understand what your doctor is testing or treating you for. How accurate are the tests? What are the side effects of each drug or treatment? If the treatment doesn’t work, what are the alternatives?

Keep a written list of all the medications you’re taking. This includes drugs, vitamins, minerals, and herbal remedies. Some medications can interact (react with each other) in bad ways. You can help your doctor watch out for this by bringing along a list every time you see him or her.

Keep a list of all the instructions your doctor gives you. If your doctor wants you to go for blood tests or X-rays, write that down. Find out whether there’s anything you need to do to prepare for a test. If your doctor suggests that you stop taking a medication for a period of time, make a note of it.

 Make sure you understand your doctor’s instructions. At the end of the appointment, go over what your doctor wants you to do: Make another appointment? Get some lab tests done? Call a specialist for an appointment? Change your diet? Decrease the amount of a particular medication you’re taking?

Learn about HIV and your immune system. Reading the latest issue of TreatmentUpdate/Traitementsida (a publication of the Community AIDS Treatment Information Exchange) or other treatment publications and newsletters can help you stay on top of things. The more informed you are, the better able you’ll be to make decisions about your health care. Don’t diagnose yourself; different infections can cause similar symptoms, so always talk to your doctor.

Keep appointments and get tests done even if you don’t feel sick. Regular appointments and tests will give you a clearer picture of your health and a better chance of getting illnesses or infections treated early on