HIV Diagnosis Day-1: Testing HIV positive can be scary news. Maybe you think it was the worst thing that could have ever happened to you. But it did and yet you’re still here. Yes, your life has changed, and your emotions might feel like a roller coaster ride as you process through the stages of grief, like shock and denial, anger, depression, and bartering for a second chance, but they are phases and eventually you’ll get to acceptance. It will take time to get there, so be patient. Remember, you’re not the first one that has been through this. There are many long-term survivors who have lived with this diagnosis for more than 20 years. Treatments for HIV/AIDS have improved dramatically. It’s no longer a death sentence, but it is a chronic disease. It’s possible to live a normal lifespan but you do have to take care of yourself. Here’s how:
–1. Knowledge is Power
A. Basic HIV.
B. HIV and the immune system.
C. How does HIV replicate.
D. Difference between HIV and AIDS.
–2. Doctors, Lab Tests, and Medications.
A. Picking an HIV doctor.
B. HIV Lab-tests and what they monitor.
C. Classes of HIV Medications.
–3. Building a Support Team
A. Disclosure.
B. Family, Friends, Partners and Employers.
C. Support Groups, Therapists.
D. Case Managers.
–4. Creating a healthly lifestyle
A. Good and bad habits.
B. Cofactor concept.
C. Biological Cofactors.
D. Psychological Cofactors.
E. Social Cofactors.
F. LIFE Course.
–5. Making a plan
Make a list of the things you need to do.
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1. Knowledge is Power
Learn as much about HIV as you can. The more you know about your disease, the better you will be able to participate in your care as a member of your health care team.
1.A. Basic HIV
The Humane Immune-deficiency Virus or HIV is the virus that causes AIDS or Acquired Immune Deficiency Syndrome. In 1981, the Center for Disease Control or CDC, began reporting a cluster of unusual diseases in California and New York. This was the start of the HIV-AIDS epidemic. Further studies proved that the disease had infected some people decades before that, but not in clusters like 1981.
Actually, there are two viruses that are classified to as HIV. HIV-1 affects the USA and most of the world. HIV-2 affects a small area of West Africa.
HIV “probably” spread quickly in the Gay community due to the ease of transmission through unprotected anal sex. And through the Injecting Drug User community because of the ease of transmission through blood-to-blood contact.
There are two characteristics about HIV that make it unique and difficult to treat or create a vaccine. 1.) HIV attacks the Immune system, attaching to immune-cells and using them to replicate the virus. 2.) HIV easily mutates. Mutations can become resistent to drugs and a vaccine can not be standardized to fight a mutating virus.
1.B. HIV and the Immune System
When any virus or foreign invader gains entry into the bloodstream, the immume system reacts by producing antibodies specific for the destruction of that invader. CD4 T-Cells are an integral part of the immune system that directs that attack on the invader. Without CD4 T-cells, this process can not take place.
HIV attaches to these CD4 T-Cells, takes them over, corrupting them to produce HIV instead of CD4 T-Cells.
1.C. How does HIV replicate.
Step-1: Attachment and Fusiion: HIV is a single strand RNA virus. In Step-1, HIV attaches to the T-Cell and injects its RNA into the T-cell.
Step-2: Conversion of RNA to DNA: Using one of those enzymes called the Reverse Transcriptase Enzyme, the singe strand RNA is converted into a double strand DNA. DNA is the genetic map needed for replication.
Step-3: Integration: Using another enzyme called the Integrasse Enzyme, the DNA is integrated into the nucleus of the T-cell which is the factory for replication.
Step-4: Final Assembly The materials are brought together and the Protease Enzyme cuts the HIV into new viral copies.
Step-5: Budding and Maturation: the new viral copies are budded out into the blood stream where they mature. Each new HIV copy then repeats the process with a new CD4 T-Cell..
As this process continues, the amount of virus grows (Viral Load) in the bloodstream while the number of CD4 T-cells decrease( CD4 T Cell Count). As the number of CD4 T-cells decrease, the immune system becomes compromised and can not function effectively to fight off other infections.
1.D. Difference between HIV and AIDS:
HIV does not kill people directly. HIV destroys the immune system allowing other infections to come in and become lethal. These infections are called Opportunistic Infections. When ever someone gets one of these infections, the CDC classifies the person as having developed AIDS. There are over 25 Opportunistic Infections associated with AIDS.
The CDC will also classify someone as having AIDS when the immune system is seriously compromised. The CDC uses the Absolute CD4 T-Cell Count and/or CD4 T-Cell Percentage. An Absolute CD4 T-Cell Count below 200 or a CD4 T-Cell Percentage below 14% are AIDS classifications.
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2. Doctors, Lab-Tests and Medications
2.A. Picking an HIV Doctor
Because HIV is a complicated disease, you’ll need to choose a Health Care Provider with experience in HIV. This could be a physician, nurse practitioner or physician assistant. HIV is not a specialty. And Doctors with an Infectious Disease Specialty are not necessarily HIV experts. Choose an HIV expert over a doctor without HIV expertise. Ask your doctor how many HIV patients he’s treating. If he’s treating less than 20 HIV patients, HIV is not his field of expertise.
It’s also important that you choose someone you like and trust. You need to be open about your sex life and recreational drug use. If you hide things from your doctor, they will not be able to give you the best care.
If you don’t knwo any HIV Health Care Providors, check out our Doctor List.
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2.B. HIV Lab-Tests are the tools your provider will use to monitor your HIV. There are 3 main tests.
Viral Load is a test that counts the amount of HIV in your bloodstream. The current tests can not measure below 48 copies or greater than 10,000,000 copies. Your HIV doctor’s #1 goal will be to get your viral load below 48. That’s referred to as undetectable. Not zero, but undetectable.
CD4 T-Cell Count is an absolute count of the number of CD4 T-cells per cubic milliliter of blood. The CDC recommends drug therapy when the absolute CD4 T-Cell count falls below 500. Below 200 is considered AIDS.
CD4 T-Cell Percantage is a ratio between the number of CD4 T-Cells versus the total number of Blood Cells. Doctors prefer this number over the absolute count. The absolute count can be affected by colds or other infections. Your HIV doctor will want to monitor your HIV therapy. CD4 T-Cell Percentage is a more accurate reading of how the HIV drugs are affecting your immune system. The CDC recommends drug therapy when the CD4 T-Cell percentage falls below 20%.
There are 3 other tests your doctor may initially use to help him decide which medications will work best for you. These tests can only be performed when your Viral Load is greater than 1,000.
A Genotype test will tell your doctor which HIV mutations you have. Certain HIV mutations are resistant to certain drugs.
A Phenotype test will tell your doctor which drugs will work. The blood is divided up into seperate vials and tested against different drugs. This is a more expensive, complicated and time consuming test.
A Tropism test will tell if your virus is using the CCR5 or the CXCR4 entry way into the T-Cell. Certain drugs only work on the CCR5 entry way.
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2.C. Classes of HIV Medications
There are over 30 drugs that are approved HIV Medications. They are broken down into 5 classes depending on where they work in the HIV replication cycle. The object of all these drugs is to stop HIV from replicating.
Entry Inhibitors work in Step-1, Attachment and Fusion. There are 2 distinct drugs in this class. Selzentry works at attachment and Fuzeon works at fusion. There are two entry points into the T-Cell, CCR5 and CXCR4. Most of the virus in the USA uses the R5 entry and Selzentry blocks that entry. This drug is effective but saved for salvage therapy . The fear is that HIV-R5 will mutate to HIV-X4 which is a more aggressive virus.
Fuzeon works at the fusion stage stopping the virus from injecting its RNA into the T-cell. This also is a very effective drug. But it is the only drug that is not a pill. Fuzeon is an injection, twice a day, and therefore patients don’t like it. Drugs are only good if you take them.
NRTI’s and NNRTI’s both work in Step-2. NRTI or Nucleoside Reverse Transriptase Inhibitors allow the enzyme to convert the RNA into DNA, but then messes up the DNA map so that its unreadable stopping replication. AZT is an NRTI drug and was the first drug ever used for HIV therapy.
NNRTI or NON-Nucleoside Reverse Transriptase Inhibitors interfere with the enzyme and stops the conversion form RNA to DNA.
Integrasse Inhibitors work in Step-3 preventing the Integrasse Enzyme from integrating the DNA into the nucleus.
Protease Inhibitors work in Step-4, Final Assembly. PI’s prevent the enzyme from cutting the HIV correctly. PI’s were the second class of drug introduced. They came out in 1996 and doctors found that neither NRTI or PI alone were sufficient to stopping HIV replication, but when they were combined into a “cocktail” they not only stopped the replication but allowed the immune system to rebuild itself. Patients on the edge of death miraculously came back to life.
Combining drugs from different classes is known as combination therapy.
Combination Drugs are pills that have multiple drug classes in one pill. Compliance or taking the medication each and every dosage is critical to keeping the viral replication suppressed. Taking 1 pill a day is easier than taking multiple pills. The drugs only work when people take them. When the drugs aren’t taken, the virus can mutate into a strain that becomes resistant to the drug.
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3. Building a Support Team
3.A. Disclosure
There’s a saying, “you’re as sick as your secrets”. Denial of your HIV will only make it worse. Denial will turn this physical disease into a mental disease and a social disease. And the mental disease and social disease will make the physical disease worse. Being in the closet about your HIV status is as bad or worse as being in the closet about your sexual orientation. The stress of keeping secrets will prohibit you from forming close realtionships with your family, friends and partners which will lead to more stress. Stress is one of the big predictors of the progression of HIV to AIDS.
3.B. Sexual Partners
But who can you trust and how can you tell them? Legally, in the state of Florida, you have to tell your sexual partners. Those are the only people you HAVE to tell. For many people these are the most difficult people to tell. Being sexual was supposed to be fun and easy. Sex is the Gay man’s handshake. It’s the way many of us make friends. Now we have to tell these people, whether they are potential life-time partners or just casual hook-ups, something very serious and personnal about ourselves that may initiate them rejecting us. That just plain sucks, and not in the good way. Maybe you’re thinking you’ll just give up sex or maybe you’re thinking you’ll just do anonymous hook-ups where no one can trace you. Neither of those will be satisfying for any length of time. Learning how to disclose your HIV status will become crucial to leading a fulfilling life. And, by the way, this criminalization of HIV people is one of the most explosive and divisive issues in HIV, affecting both HIV treatment and prevention.
3.C. Family, Friends, Partner/Spouse
Your sexual partners may or may not become part of your trusted support team. Your Doctor or Health Care Providers should certainly be part of this team, obviously. Other people you may want to consider are family, friends, religious or spiritual advisors, mental health professionals and of course your partner/spouse. You need at least one person you can trust about disclosing your HIV status. Someone who listens to you, non-judgmental, supportive and does not try to “fix the problem”. Someone who when you share information, it remains private and confidential. If you don’t have people like this in your life, find a support group. The Wednesday Night Support Group, Pozitive Attitudes, is one option, but there are many other groups out there. Pick one and just go to it. The GLCC-Pride Center at Equality Park, The Wellness Center, and Sunserve all offer HIV support groups.
3.D. Employer
Your employer does not have to be informed, but you may need time off to go to doctor visits or you may be experiencing health issues that require time off. HIV/AIDS is covered under the Federal Disability Act, but that doesn’t mean your employer can’t fire you for other issues after you disclose your status. Be careful.
3.E. Case Manager
Another key person on your Support Team may be a Case Manager. Case managers have helped people access medical care, housing, emergency financial assistance, food, clothing, support and mental health/substance abuse treatment programs. They are familiar with community resources and can serve as guides through the complicated systems that HIV-positive people have to negotiate. Here in South Florida, you can find Case Managers at Broward House, Care Resources or Minority Development and Empowerment. Case Managers provide a valuable resource in your Support Team, but be patient. The system does work, but it has a lot of red tape.
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4. Create a healthly lifestyle
4.A. Bad and Good Habits
How is it that some people who have HIV or even AIDS have remained alive and healthy for many years while others have perished? There must be other factors besides traditional medicine that make differences. You already know that smoking, drinking and drugs are bad habits that will affect your health negatively. And, you know that good nutrition is a good habit that can affect your health in a positive way.
4.B. Cofactor concept
Bad habits and good habits could be referred to as cofactors. Cofactors can speed up or slow down the development of HIV related symptoms or AIDS, enhance or weaken the immune system, and support or weaken your ability to avoid health risky behaviors. They can be divided into biological, psychological and social cofactors.
4.C. Biological Cofactors
Body Care, Breathing Patterns, Water Intake, Nutrition, Exercise and Sleep.
4.D. Psychological Cofactors
Grief, Depression, Belief about HIV Progression, Self Assertiveness, Stress, Coping skills, Drug and Alcohol Risk Behavior, Sexual Risk Behavior, and General Health Risk Behavior.
4.E. Social Cofactors
Trusted Support, Self-Disclosure, Life Purpose and Goals, Spirituality, Altruism, Primary Healthcare, Adherence to Health Routines and Toxins & Germs.
4.F. LIFE Course
Learning how to evaluate these cofactors and making decisions based on evaluating the benefits versus the costs are behaviors that can be learned and incorporated into your lifestyle. Good habits can be learned. And bad habits can be minimized.
A lot of these cofactors are cofactors for all people regardless of their HIV status. Reducing stress is something that would improve the health of anyone. The importance of exercise, sleep, and coping skills are universal cofactors for everyone. You can find books, information online, and classes that deal with most of these cofactors. There are support groups that deal with them. Our Wednesday Night support group has made some of these the nightly group topic. There is also a class that specifically deals with these cofactors for HIV positive men called LIFE. We highly recommend this course for both the newly diagnosed and the long term survivors.
Regardless of whether you take courses, attend support groups, read books or surf the internet, understand that there is a direct correlation between creating a healthy lifestyle and staying healthy.
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5. Develop a plan
1. Don’t panic.
This is not a death sentence, but a manageable disease
2. Talk to someone about your diagnosis.
Don’t isolate yourself.
3. Get a Case Manager.
Evaluate your Insurance, Medical needs and resources available
4. Get an HIV Doctor or Expert.
Find an HIV expert that you like and trust.
6. Educate yourself about HIV.
Knowledge is power.
7. Join an HIV support group and/or talk to a therapist
Build a trusted support network.
8. Don’t infect anyone else.
Learn how to play safe and discuss HIV with your prospective partners.
[…] Newly Diagnosed […]
Wow.. this is a great resource. I wish I had this when I tested positive. it took me years to figure this stuff out.
Thanks. I wish I had it when I tested Poz too.
-Steve
BTY, the whole discussion tonight about who needs to wear condoms the most – concluding that it would be the negatives couples – was so right on target. Guy men have such high libidos and testosterone levels, (I speak from personal experience). Any gay man after testing negative with his partner also being “negative” who thinks that there is always going to be monogamy is living on another planet. The three week window of high viral loads for newly diagnosed makes the point even stronger for safer sex practices for such couples. That why I prefer other positive men, less complicated.
Also, Thanks for pointing out the big difference between getting a different “strain of HIV” and of “getting resistance to certain meds.” But, my biggest enlightenment of the discussion turned to the subject of disclosure. How interesting that some people would actually invest so much time, energy and effort by dating someone several times before letting them know their HIV status. How many hearts have been broken when becoming emotionally attached (which many gays do very quickly, guilty here) to someone who is just not available for dating a positive man?
This list is SO Good for the Newly Infected. I would like to add to the list as well:
Sign-up for the LIFE Program at the Pride Center. Call (954) 463-9011 for more information.
It is a 17 week program where you will work on 26 Co-Factors pertaining to living with HIV. You will learn a great deal which will help you to educated versus anxious. Plus you will meet a hell of a lot of nice men in Ft. Lauderdale who are also HIV+.
Jeff,
I incorporated the cofactor concept into the ‘Creating a Healthy Lifestyle’. TThanksotally agree that this is a great program and I encourage everyone to join this. Glad you like the list.
Thanks
-Steve
HIV / AIDS PREVENTION & EDUCATION: MARCH 04-11; 2012
The Aids Names Quilt Hangs for a limited time ~ in Fort Lauderdale Florida. Go see before they are gone…. tell your friends. Dont Wait~ or ~ Hesistate.
from March 4-11 at the National Week of Prayer for the Healing of HIv / Aids. 2501 Ne 30 Street FTL FL 33306 954-563-4271.
Near Oakland Park Blvd and Federal Highway. Across the street from Plaza 3000