POZ Community Forums
Main Forums => Living With HIV => Topic started by: jasonpoz12 on July 29, 2006, 12:49:17 pm
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I found out I am POZ more than one month ago (I might get infection from a surgery 7 years ago). I was too sad but I gradually accept it. I started HARRT treatment 4 days ago with Truvada + Sustiva. The side effects are Ok, I can manage them. But I have a big problem is that my CD4 counts is too low. CD4 count is only 5.
My doctor checked my body and told me I am still healthy without serious opportunistic infections. I don’t have fever. I can eat and don’t lose weight. I still have energy and can keep on working full time now with anti-depressant drugs. My doctor prescribed me some drugs to prevent opportunistic infections and started my HARRT treatment 4 days ago.
I am so worried about my CD4 and did lost of search in Internet, I found treatment from very low cd4 the result usually is not good. There is big chance I get sick and die soon. I like to know if there is any friend in the family who started treatment from low cd4 and how the result is. I also like to know some advices and direct experiences about the treatment from very low cd4.
Thanks. Any advices and experiences are welcome.
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I had a CD4 of 21 and VL over a million. Jason, you can and will recover, but it is going to take time. You may very well feel totally shitty as your immune system begins to re-vitalize so to speak, but after that you will be amazed. In the meantime, be just as adherent to your prophylactics as your HIV meds. It is just as important.
PS. I was at 21 a year ago, and now am at 242 last labs.
Good luck my friend,
John
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Hi Jason,
I have had a low cd4 count since I was diagnosed in 1993. I was at a count of 5 at one time also. So, to answer your question, yes, you can survive. Take all your meds as perscribed (hiv and the prophylactics), try to be 100% compliant. Take good care of your mental health, eat well, drink plenty of water, get enough sleep, control stress. If needed try to stop smoking, drinking, taking drugs. Practice good hygiene- washing your hands.
Focus on positive things. Have joy and love surround you. If you have a spiritual belief focus on that.
Maintaining a healthy lifestyle, and being compliant with all of your meds, keeping all of your doctor appointments, and listening to your body for any changes that might need medical attention will help you greatly.
Christine
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In 92 I had CD4 of eight and a viral load of 600,000. Now I am undetectable and continue to have about 350 of those bad boys. I bet you are going to be pleasantly surprised with your next set of labs.
Hang in there.
Hal
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I still have energy and can keep on working full time now with anti-depressant drugs.
Jason..just use your energy in a positive sense as stress is not good on CD4. You seem to do fine according to your Dr. and you'll be amazed to what these meds can do, after all you only started 4 days ago. I'm sure you'll be fine and other postings above me are just proving that.
Regards,
The Canuck
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Hi Jason,
Welcome to the forums!
My hubby was diagnosed May 5, 2006. His CD4 was 85 and his viral load was over 280,000. He was running a fever and had been for about a month. When it got to a little over 103 I took him to the emergency room.
They found out he had meningitis. He spent 3 days in the hospital.
His next set of labs after being on meds for a little over a month is CD4 203 and his VL is 125.
He feels great.
So try not to worry. You will be fine.
Hugs
Teresa
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While my CD4 has never been recorded below 200, I have known a few who had very low counts and are doing quite well now. The most important thing is to adhere religiously to you drug regimen; as others said, there my be problems, even set backs, but you can deal with watever happens if you want to survive...and you WILL survive.
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Jason,
Three years ago, before starting my current regimen, my CD4's were in the single-digit range (9, to be exact). My VL was 300,000.
It took a while for the CD4's to improve, but they're now 160. Not great, but I have had no medical problems at all, even when my CD4's were at their lowest. VL is undetectable (with an occasional minor "blip").
When you start from a low CD4 count, it can more difficult to get huge gains in your CD4's. That's not to say it can't happen. My guess is that your CD4's will start increasing real soon and your VL will come way down. I hope you'll be getting more lab work done in about a month so that you'll see those results improving.
It's been about eight years since my CD4's were over 200, but, like I said, I have not had any medical problems. I do take Septra (aka Bactrim) every day, and when my CD4's were below 50, I also took fluconazole. These drugs help prevent opportunistic infections when you have a low CD4 count.
Good luck to you. You're going to be OK.
Allan
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The risk of something serious happening, including dying, is significantly greater if your CD4 is under 50, but it is very likely you will survive. It may be a rough few months. A friend of mine started treatment in 1996 with a CD4 count of 10 and cancer (lymphoma). He gets married on Monday.
Good luck.
- matt
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When I was diagnosed I had a cd4 count of 22 and a vl of 250000.
That was over 6 years ago and I have been undetectable ever since my first blood work after starting meds.
My CD4 count is in the mid 300's now. Never been seriously ill or in the hospital in that time.
So the short answer is that if you take your meds correctly and take care of yourself, you'll do fine.
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At the clinic where I was diagnosed, the nurse told me thay had patients with 6 cd4, and now they are doing great. A few days ago I was in Lisbon and spent a few hours with "portuguesecouple" who are also members of this forum. They have a friend who had 8 cd4 a few months ago. Now she has 133 cd4. So everything is possible.
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Thanks for your guys’ direct or indirect experience and advice. From so many successful cases I see the hope. But I know great risk is still there since such low cd4 count.
I don’t smoke and only drink very little beer sometimes. I will adhere to the meds and do what ever the doctor require me to do. I think I am competing with the viruses. Hope the severe opportunistic infections will not hit me down before my cd4 goes up to a relative safe level.
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Hello Jason,
I had a Cd-4 count of 16 back in October of 2003. It currently stands at 322. It may take a little while, but with a good diet, plenty of rest, and knowing that you can not burn the candle at both ends, hopefully you will be able to build those cd-4's back up again. Its good that you are able to eat, and that your weight is maintaining !! It's important to keep the weight on.
I also was able to work when my tcells were very low. I look back at now, and I am not quite sure how I managed that, but I did. Just remember what I said earlier. Make sure to get plenty of rest when you need it. You should try for at least 8 hours of good solid sleep a day.
Check out the nutritional forum also. There is some good information there also !! Do you know what your viral load was, when you started treatment. It's also very important to try to get that number to an undetectable level, soon after treatment.
To understand more about your T-cell and viral load numbers, click on the link below. Take your time reading, and when you have questions, go ahead and ask them. Someone will be here to help you understand.
Click below :
http://www.aidsmeds.com/lessons/TCellTest.htm
Understanding Viral load :
http://www.aidsmeds.com/lessons/VLTest.htm
Take care of yourself/ Keep in touch----------Ray
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Jason,
Check this thread out also :
http://forums.poz.com/index.php?topic=234.0
Ray
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Let me add my success story to those already posted. When I was diagnosed in Sept 2004, I had a t-cell count of 90 and a viral load of 750,000. I went on meds immediately, and while it took awhile for my VL to reach <50, I had more than 300 t-cells within 3 months. After almost two years, my t-cell count is over 500. I've never been sick before or after diagnosis, and I feel great. Just do everything you can to protect yourself -- eat right, get plenty of rest and take your meds religiously. You will make it!
Rob
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if you have the will to live, and are willing to go to any lengths to maintain it....yes you will survive. I got so bad, everyone gave up hope, except for me......and here i am, too damn ornary to die*
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Hello Jason, it is Eldon. First of all welcome to the forums! You will find a lot of love and support that you need here.
I too started at a very low CD4 count as my Doctor put me on meds just recently in Feb 2006. The CD4 Count was 51. I have never been sick or have had any fever, or OI's thankfully. All I can say is that everyone has said it, watch your diet, get plenty of excercise, and reduce your stress, cut the drinking and quit smoking if you are.
You will be fine, take your medicine as prescribed by your Doctor.
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Jason,
Just to say again what Eldon had said to you at the end of his statement. Your doctor has probably already mentioned this to you, and that is the importance, of adhering to your medication. Make sure to take your medication, when your supposed to,( at the proper time) and definitely try NOT to miss or skip doses. It's very important that the medications continually do their job, at keeping the viral load suppressed.
Hang in there !----Ray
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J.R.E.(Ray), RVinVA(Rob), AIDS2HIV, Eldon and other friends,
Thank you very much your concern and advice. I will 100% adhere to the meds and have enough rest and enough food. Meds do affect my appetite but I will try to eat enough nutritional food to keep my weight.
The disease gives me so much mental pressure every day so I have to take anti-depressant drugs. I will have a blood lab after 3 weeks of meds. I know it is too short to see the result just after 3 weeks of meds. Hope my cd4 can increase a little bit and VL will be reduced at that time.
Currently I am worried about the CMV infection. CMV infection seems can not be prevented by drugs. CMV infections can happen when cd4 is less than 50. Anyone has some experiences about the CMV infection?
Also I hope to see more successful stories.
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This is the same question that has been the main topic for the last week in my household. It seems as most of the replies here have talked about when first diagnosed, and then starting meds, with some awesome results. But mine is different, I have been true to all the different regimens that I have been on over the years, and there is just a few on the list of meds that I haven't been on. I have battled to stay above 50 for the last couple of years, and last week I hit 8. The Ois have been numerous over the 18 years. Wasting is apparent from day to day. So now, just to spin the question to the other end, how many can say yes when the negative is greater than the positive? Do we all finally face the answer of no to this question? Those that have watched someone loose this battle, did they know the day when they answered no to this question?
Just a spin....
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Hi Jason,
I have CMV. First diagnosed as CMV retinitis. I noticed floaters and a hazy look in my right eye. It looked like I was looking through a dirty window. I called the doctor right away, and then was referred to an opthamologist who specializes in retinal diseases. He diagnosed CMV with an eye exam. CMV can be seen on the retina. It looks like salt sprinkled on the retina. I started oral Valcyte, at a treatment dose level, which for me is 900mg twice a day. It was pretty difficult for the first month. It made me nauseated, and caused vomitting. But the risk of not taking it was blindness, so I dealt with the side effects.
The valcyte worked very well. And then I went on a maintenance dose of 900mg once a day. A few months ago, I noticed the hazy look again in my right eye, and went back to the opthamologist right away. The cmv had reactivated, and I was once again place on the treatment dose. I have had a slight loss of vision in my right eye, but the flare up is now again under control.
I don't know if valcyte can be given as a prophylactic. Talk to your doctor about that. It does have some side effects, anemia being one of them.
My advice would be to follow what everyone has posted about taking care of your health, and since you tcells right now are low, if you notice ANYTHING in your body that seems off, or not right, call the doctor right away.
If you would develop a cmv infection, and it is caught early, the meds can work very well. Just don't let anything wait. Listen to your body, learn what is your norm.
Christine
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When I went into the Hospital in Febuary 2005 my CD4 count was 1. My ID told my family to get prepared for my funeral. But that was over a year ago and I'm still alive with a CD4 count now at 174. So the answer is YES you can Survive. It just takes time.
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Welcome here:-)
You can survive!! I as many here also have an acquaintance who in 2000 was diagnosed hiv pos, his first labs showed CD4-4 and viral load over 1Mill. He is doing well now with CD4 around 300 and no detectable viral load. I might add his cocktail is a bit stronger than most cocktails I've heard off but he does well with it.
I wish you the best. Take your meds on time, try to get rid of all the stress you may have, maybe you may want to consider cutting back on work a bit for a year or so. If it's financially possible it may bring you more health in the long run:-)
keep your head up,
Greetings,
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Jason,
You can and will do it!
In November 1999 - I had a CD4 of 10 and a VL 500,000+ when diagnosed.
As of 7/30/06 - my CD4 is 568 (I have been between 550 and 650 for the past 2 years) and I have been undetectable since July 2001. My next ID appointment is 8/2 and hope it's good!
Take your meds on time - every time (I take mine in 2 equal 12 hour doses - 1 each of Trizivir and Viramune)!
Ron
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Hi Jason
My name is Marchall and I got diagnosed 6 years ago. My CD4 also was very very low and gradually it got better. Remember, going onto treatment is a lifelong commitment. Surround yourself with positive friends in you life. Stress is the number 1 killer to us, living with the Virus. See it this way, you have a unwanted “guest” and must accommodate it. To boost your immune system, you can take EMMERGANCY C, it has 1000mg of vitamin C, and is dissolved in water. In combination, try a supplement that’s high in Iron. Steer clear from MSG products, it will make you sick ultimately. Loads of Vegas and fruit, and above all, grapefruit is also not good if you on Antiretro Viral Meds. So avoid it. What grapefruit does, it combats your medication, in its absorbsion. Ps. just be a bit carefull when it comes to anti-depressants, some actually also clash with ur meds and could lead to body fat reduction. So check with your doctor if what is given to you will work with in harmony with your meds. You will high points and low points and thats normal, but above all, always remain positive with a positive outlook on life. We have one life, live it to the best of your ability.
Life still carries on, so live your life. Ps, drop me a email to let me know you ok.
All my love
Marchall
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Hi Jason
I lived for years with CD4's between 0 and 10. Yes, you can certainly live, as many of us are proof. Not only did I live, I kept working! At times, my doctor wanted me to wear a surgical mask to work, to protect myself since I had no immune system....I did it, and it was like wearing a sign that said "LOOK AT ME I HAVE AIDS".......
Just take yours meds, take care of yourself, and my # 1 piece of advice: remove stress from your life. If someone or something is causing you to be stressed out, figure out a way to remove it or drastically reduce it. I had to almost die to learn that lesson. But it is one I will never forget.
Hugs,
Alan
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i had CMV infections also, now requiring me to wear glasses, also have a "butterfly patch" on my face from it Things will improve as your numbers improve....God Bless*
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I have been true to all the different regimens that I have been on over the years, and there is just a few on the list of meds that I haven't been on. I have battled to stay above 50 for the last couple of years, and last week I hit 8. The Ois have been numerous over the 18 years. Wasting is apparent from day to day.
bump and a prayer for dad1216
Jason: It's superb that you're a non-smoker. 12 months ago my CD4 was 42 - The present count is 321 (19%) ... There's great advice in this thread. CD4 percentage is also very important. Click here (http://www.aidsmeds.com/lessons/TCellTest.htm) and scroll down to What is the T4 Percentage? One thing my gut feeling tells me helped me was taking a food intolerance test from a holistic nutritionist. I found out I have albumen intolerance which means everytime I ate an omlette or cake or french toast, the egg proteins caused infections and my immune system had to fight overtime. Needless to say I avoid eggs like the plague now and I feel 50X better since
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I read your post last night and watied until after my id appointment today to respond. I was diagnosed 12/3/04 with a vl of 30,000 and cd4 of 26.; ID appointment today confirmed CD4 of 202. I have been undetectable for over a year. Today vl of 94, no worries though, ID said probably just a blip.
Never been sick, never missed a day of work, or time with my kids and family, living life and feeling good.
Emotionally, the roller coaster has much steeper ups and downs initially than after you get used to the ride.
Follow the advice you have received here it is the best.
GBL
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My CD4 count was 45 when I was admitted to hospital with PCP. VL was over 500,000. Just 4 months later I weigh more than I ever have, have a VL which is undetectable, and my CD4 has just topped 200. Keep the faith! Anything is possible when you believe.
You might want to do some reading on Opportunistic Infections (OI) so that you can recognize symptoms early and seek medical attention to confirm and resolve anything you may experience. It's a complicated virus and we all react differently to it, the medications, and our circumstances but the one thing we have primarily in common is that we are not alone.
Stay educated and stay well :)
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Hi all friends,
Thank you very much for your reply and encouraging words for my post.
I have problems recently. I have severe allergy to Sustiva now. I have fever and dry rash whole body. I could not work for three days. I feel very tired and sleep long time every day.
My doctor stopped all meds and she said allergy is very dangerous to me since my CD4 is so low. So she will treat me the allergy first. After the allergy is gone she will start the treatment again.
I am so unhappy about this. I hope I can keep on treatment. But there is not way, I have to wait for more than 2 weeks to restart the treatment.
I have some questions like to ask:
1: Any one has the same experience like me. With very low cd4 and allergy to sustive. How long will the allergy go away?
2: My doctor will put me on Reyataz, Norvir and Truvada. How are the side effects of the regime? The regime could be good one?
3: I stop the Sustiva and Truvada completely now. Could the resistance generated? My doctor said not, because we stop completely. I like to hear other people’s opinions.
4: Anyone have same experience like me, with very low cd4 and could not do well with first regime. Have to change one or two times to get proper regime. Could this one lead to I have not more options in the future.
Thanks.
Jason
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Is my first time in the forum and reading the post I learn a lot. Thanks for the information that help a to understand more this disease.
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2: My doctor will put me on Reyataz, Norvir and Truvada. How are the side effects of the regime? The regime could be good one?
Jason: My doctor told me th Reyataz, Norvir , Truvada combo has a good reputation and said it is one of the most well-tolerated in terms of side effects, i.e., minimal side effects associated with this combo! - usually 8) 8) (hope that's true for you)