|a 2nd opinion from a broad :)
Jun 23, 2007
Hi Dr Frascino,
I am very thankful I found this website and you. You're the only one who still injects humour in your answers and that makes me realise that there is still hope in this world of mine.
I've been diagnosed positive last Aug but I do not know when the seroconversion was. My first reading in Feb '07 was CD4 317 vl 238k and 2nd reading May '07 was CD4 306 vl 258k. My doctor suggests a 3rd reading scheduled this Aug to get a 3rd point reading.
I hate being reminded every morning that I'm not as well as I look. My bowel movement is ALWAYS liquid and mucuous-like. I have some 2 white spots on my tongue, sometimes bleeding gums, very-itchy ass (this happens only in the night... serious!) and many lymph nods on my neck, these are not getting more or larger, but is taking toll on my confidance in even wearing a simple collarless tee shirt.
I read that as long as my CD4 is above 250 I can stay off the meds, is this true? Coz recently there's another finding that if vl is above 100k, one should start medication no matter the CD4; is this also true?
Is there anything I can do to boost up my immune system? I've been eating well, exercising, no smoke, no drinks, not even sex... for fear of re-infections and accidental infection onto my partner. And with the spots in my mouth, I'm just not comfortable doing anything with anyone.
Honestly, I do not mind starting meds tomorrow but it is a full time commitment and there are the side effects, a new set of problems I have to deal with. My logic is, at least I'll have peace of mind that my body is no longer secretly degenerating?
What's your professional advise? Can I wait till the 3rd reading? Should I wait?
| Response from Dr. Frascino
Hell French Gem,
In my opinion, the CD4 count and percentage are the most important indicators for initiating treatment. Most current guidelines suggest beginning HAART (highly active antirretroviral therapy) when the CD4 count falls consistently into the 250-350 range. I see no harm in waiting until August to get a third data point before considering HAART.
Aside from that I would have your HIV specialist evaluate your ongoing symptoms chronic diarrhea, perianal itching, etc. Often an underlying cause can be identified and these symptoms, quickly alleviated. For instance, you could have an intestinal parasite.
Regarding general immune health, you've covered most of the basics optimizing your diet, exercise regimen and sleep/rest cycle; decreasing stress levels; not smoking and drinking only in moderation. In addition I would add identifying any underlying concurrent infections or medical conditions that require treatment. I also would delete the "not even sex" component. Without sex, I would probably explode or at least become one grumpy boy! Just keep the sex safe and you'll be fine. Sex is a great stress reliever plus, if you're doing it right, it counts as exercise!
You can read detailed information about when and if to start HIV meds in the archives, as I've addressed these questions frequently in the past. I'll reprint a sample below. There's much more in the archives.
How long should i wait (WHEN TO START TREATMENT) Jun 4, 2007
I have a CD4 count of 485 and a VL of 45 000. How long will it be before i should consider meds? I live a fairly active lifestyle including regular workouts and i have recently given up alcohol and smoking.
Response from Dr. Frascino
This topic comes up very frequently. (See below.)
Morons! May 22, 2007
I'm just furious about those morons who are proven HIV negative with a proper test and are still worried and sending questions to take up more of your time!! they just sound so provocative to me! PEOPLE I HAVE HIV..FOR REAL! however, I feel sorry for you and not for myself! can you believe that?!
Anyway Dr. BobZ, I'm not here just to scream, I have a question actually..
My last counts are as follow Cd4 349 VL 17000+ Cd4 502 VL 28000+ then Cd4 334 VL 48000+ then finally Cd4 300 VL 75000
I can't really take the tough decision and start treatment without your advise! Do you think it is time ? I'm very healthy! just had a few mouth ulcers lately! thats all! Is it better to start now with all these data suggesting early treatment pays off later?
Oh and by the way, AM I At risk of HIV? Do you think the 11th test is warranted? I just did Cunnilingus on George Bush!
Response from Dr. Frascino
There are a variety of factors that need to be taken into consideration in determining the best time to begin HAART. Certainly these would include CD4 counts and plasma viral loads, but also other factors need to be put into the equation. For instance, are you ready to start and be committed to adhering to your meds? Do you understand the options, risks, potential side effects, dosages of the various regimens, etc.? Are there other conditions that need to be treated first, such as active TB or certain psychiatric conditions?
As for your current lab tests, assuming your tests were taken several months apart, it appears your CD4 count is now in the 300 range and your plasma viral load is rising. Assuming there are no concurrent conditions, such as another type of infection, that is driving your CD4 count down and HIV viral load up and that you are psychologically ready and committed to beginning HAART, most guidelines would suggest this is the time you should strongly consider beginning treatment. I agree. I would recommend you get a resistance test (genotype) and discuss treatment options with your HIV specialist. You may well be a candidate for a simple one-pill, once-per-day regimen (Atripla). Should you decide to wait, I would strongly encourage you not to let your CD4 count fall into the 200 range, as this would place you at significant increased risk for opportunistic infections.
As for oral sex with George Bush, I'd strongly recommend against it. Aside from the "ick" factor, it's common knowledge now that Dubya does not know when to pull out!
Good luck. I'll reprint some information about starting meds below.
Preparing to Start Treatment
Once your doctor recommends that you begin treatment, it's important to consider how treatment will change your life. Are you ready in every way -- mentally as well as physically? Remember: Most doctors say that you have to take your medications at least 95 percent of the time to keep HIV under control. This means you have to be certain that taking your medications will become a central part of your daily life.
No doubt this commitment will be challenging. However, you have a good chance of keeping HIV under control with the first combination of medications that works for you. If this combination successfully suppresses the virus, and if you take each and every pill prescribed, you may not have to change medications for a long time.
What if you aren't always able to take all your medications on time?
This may cause your first combination of medications to fail. If this happens, it can get harder and harder to keep HIV under control with each successive drug combination. So it's crucial to identify a combination you can stick to, before you start treatment.
Here are some things to consider:
Your medication schedule shouldn't be too complex. One thing is certain: Taking medications daily will change your life. Suddenly, you'll have new responsibilities. You'll always have to be aware of the time, your schedule and changes in your routine. In some cases you may have to schedule taking your HIV medicine around meals or take it with or without certain foods. You'll have to remember to take your pills with you if you are going out at night or away for the weekend. Even if you are depressed or busy, you will still have to take your medications exactly as prescribed every single day. So, before you start, you must ask yourself: "Am I really ready?"
Plan how you will deal with side effects if they occur. All medications can have side effects -- even aspirin. Not everyone experiences side effects from HIV medications, which can range from mild to severe. Because you really want to give this first combination your best shot, talk to your doctor and read about the possible side effects of the medications you are thinking of taking. This can help you not only plan how to manage side effects if they arise, but to choose medications whose possible side effects you think you can manage.
Your surroundings and your mental health are important. If you are feeling depressed, using recreational drugs or living on a friend's couch, it may be unrealistic to assume you'll be able to take all your medications all the time. So make sure you have organized your life before you begin treatment. This way it will be easier for you to follow a strict treatment plan. It's also a good idea to get some support. It helps immensely to have friends, family or a therapist you can rely on while you are on a treatment regimen -- especially at the beginning when you are still adjusting. Check out the largest AIDS organization in your area for support groups. Need to find an AIDS organization near you? Want to learn more about your treatment options?
Details, Details: More Things to Keep in Mind When Choosing Treatment
Number of pills and how often each day. This can vary from 11 pills twice a day to one pill once a day.
Anything that could interfere with taking all your pills on time. Travel? The timing of meals?
Your support system. Can you count on your friends? Family? Therapist? Support group?
Sequencing of HIV medications. Ask your doctor what options you'll still have if your first combination stops working.
Strength of HIV medications. Which medications are right for you given your T-cell count and viral load?
How long the drug has been around. What is known about short- and long-term side effects?
Side effects. Are some side effects more tolerable to you than others? How will you manage them if they arise?
When to Start Treatment?
Doctors still disagree about when is the best time to begin HIV treatment, also called antiretroviral therapy. You and your doctor will need to determine this together, but there are some respected guidelines. Be aware that these guidelines are regularly updated and are not hard-and-fast rules. They are just suggestions based on the most recent research.
For example, the U.S. government's Department of Health and Human Services HIV Treatment Guidelines (view PDF of guidelines) recommends that you begin HIV treatment if you have any serious symptoms, or before your T-cell count falls below 200. Some doctors prefer starting treatment if your T-cell count is above 200 but below 350, in hopes that starting treatment a little earlier will help your immune system stay healthier.
Once you start taking HIV medications, you'll probably have to take them for a very long time, so you and your doctor will want to make sure you are absolutely ready before you begin treatment. This way you can postpone possible medication side effects (which we talk about later in this booklet) and make the most of the powerful initial effect medications can have on the HIV in your body.
Current Guidelines Recommend
If your T-cell count is 350 or above, treatment is not recommended unless your viral load is 100,000 or higher, or you have serious symptoms.
If your T-cell count is between 200-349, treatment should be seriously considered.
If your T-cell count is below 200, to avoid dangerous illnesses, start treatment.
All studies indicate that it is best to start HIV medications before your T-cell count drops below 200 in order to avoid dangerous HIV-related infections and illnesses. Your T-cell count, however, will vary from test to test. Often, your doctor will wait for you to have two consecutive T-cell tests that are low before recommending that you start HIV treatment.
What Is a T-Cell or CD4 Count?
Your T-cell count, also known as a CD4 count, reveals the number of T cells in your body. A T cell is a special kind of white blood cell, and the more you have, the stronger your immune system is. When you were infected with HIV, the virus entered into some of your T cells. When these HIV-infected T cells make more copies of themselves, they end up making more copies of HIV as well. HIV can also destroy T cells, as well as other surrounding cells. After living with HIV for a while (if you don't take medications) the number of T cells you have will usually go down. This is a sign that your immune system is being weakened. The lower your T-cell count, the more you risk getting sick. A normal T-cell count for someone without HIV is usually between 500 and 1,600.
What Is Viral Load?
Viral load levels tell you and your doctor how much HIV is circulating in your blood. The more HIV in your system, the quicker your T-cell count tends to drop. This makes viral load a helpful predictor of the health problems you may develop if you do not take medication. It is also a good measure of how well HIV medications are working once you begin treatment.
Your viral load count measures the amount of HIV per milliliter (mL) of your blood. Current viral load tests can detect as few as 50 copies of HIV per milliliter of blood. When you have fewer than 50 copies/mL of HIV, your doctor will tell you that your viral load is "below the limit of detection," or "undetectable." This does not mean that there is no more HIV in your body. So even if you are "undetectable," you can still transmit HIV to someone.
Getting Into Good Habits Before You Start Treatment
Even before you begin treatment, you may want to change your life. Now is the time to eat well, exercise, and if you smoke, drink or use recreational drugs, stop these unhealthy habits. Recent studies have shown that smoking may be particularly risky for people with HIV. Before you put anything into your body, consider if it is good or bad in your fight against HIV. If it doesn't pass the test, avoid it. You need to maintain and strengthen your immune system. If you are taking any drugs, vitamins or supplements at all -- prescription, over-the-counter or recreational -- make sure you tell your doctor so that you can avoid dangerous interactions with HIV medications. For example, antihistamines, birth-control pills and recreational drugs all have been shown to have serious interactions with HIV medications. Even the herb St. John's wort can reduce the strength of some HIV meds by half.
Can You Really Talk to Your Doctor?
Does he or she listen to you? Choosing a doctor you can talk to is crucial. You'll probably have many questions; make sure your doctor is available and able to answer them before you make any decision about starting HIV treatment.
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