I was recently diagnosed hiv+/aids about a month ago with a very low cd4 of 47. My ex-husband infected me but I suppose that is irrelevant at this point. I'm afraid I will die and I'm very scared. I started medication about 3 days ago and hope that it turns my numbers around. I've faced challenges in life before as we all have but this seems like an obstacle that I don't know if I have the strength to get around. I feel like an empty shell. I find it very difficult to laugh at anything. I used to love to laugh.
Complicating matters, they found I have a diffused encephalopathy (lesions on the brain) that is hiv-related. It affects my short-term memory and it is suggested that I not be left alone, drive, or work. I'm extremely grateful and lucky to have my mother and father who are caring for me; yet, giving up my independence is very difficult.
I'm single and feel as if I will never find love again. That hurts deeply as I'm an affectionate woman and I enjoy male companionship.
I have many questions but for starters I'm wondering if anyone will share their experience of the length of time you noticed the meds started working?
Has anyone had a low cd4 such as 47?
How long does it take for your cd4 to return to a normal range?
Thanks for your feedback. This forum is amazing!
the meds will effect your count pretty quickly
i would say within days your count should be climbing up
my count has been as low as 147, that was in a controlled study when i was off meds.
it is over 550 today.
i hear you on the being alone part.
in my experiance, every single person that i have
disclosed my status to, has acted differently towards me
be real careful in who you tell.
dont worrie there are alot of people who are like us its just dont know yet but there is so much hope trust me jus live your life as normal you will even forget that you are like that
and as long as you are taking your medication that all that matters
I am a nurse practitioner and I can tell you having HIV is not AIDS. And it never has to be. HIV is not what it used to be when it first "came on the scene" almost 30 years ago. People go on to live a complete life that is not cut short by this virus. The important thing is to take your meds religiously and you will be fine. Be smart, try to avoid people who are sick, etc. Educate yourself and be informed. Staying healthy is vital to living your life to old age with this virus because it is not the HIV that kills but other infections due to your compromised immune system. You are newly diagnosed, so give yourself a chance to accept this. You will probably "mourn", go through denial, anger, bargaining, etc. and that is ok. Take time to come to grips with it, but do move forward to a place of acceptance and tell yourself that you will be ok, cause believe me, you will be ok and live a fine life.
I tested positive in May 2008 with a CD4 count of 20 and a viral load count of more than 6 million! I was infected from a one-time incident over 10 years ago. I had actually all but forgotten about that incident since it was so long ago. I never experienced any symptoms until just before being diagnosed. I noticed I was bruising easy, having nose-bleeds, and started developing strange spots on my face. My doctor advised that I be tested for HIV as I had developed what he noticed to be Kaposi's Sarcoma and my blood platelet count was zero.
I started my meds soon after (Atripla for the HIV and Bactrim for pneumonnia) and within 6 months my CD4 count was 100 and my viral load was zero! My CD4 count has continued to increase (I am currently over 250) and my viral load has remained at zero. That is what I call a miracle and a blessing from God that I have never had any problems with any other ilnesses or with any side-effects from the meds (non-existent in my case).
Always remember to stick to your drug regimen and NEVER SKIP A DOSE! If you recently started and are experiencing side-effects, know that they will subside in time as your body adapts to the meds.
I can't tell you enough how encouraging your email was! It gives me hope as most things that I hear are about hiv and what you could/should do to ensure you do not fall below 200. There is not a whole lot of information (at least that I've found) on what to expect once you are below 200. The good news since I received your message is that my cd4 went up from 47 to 118 after I started the meds October 1. My viral load upon diagnosis was 300,000 and the recent results show it went down to 299,000. So that's an improvement as well.
It is truly amazing and I agree...a miracle from God....that your numbers improved so drastically! It's wonderful that you remain above the 200 threshold and continue to improve. I know I shouldn't get caught up in the words of hiv and aids but I'm curious, is your status now considered hiv now that you are above 200 or will you always be considered as having aids since your cd4 was so low? I wondered about that once I get above 200.
It's also wonderful that you did not have any side-effects to the meds. I have been blessed too other than a rash that has developed all over my face. They are like little heat bumps and they itch. I've also had a few mild cases of the runs but not sure if that's the meds or the virus.
Did you go out of the house when you were under 200? Were you out of work? My doc said 3-6 months but I will have to ask him if that is because the immune system is so low or what. I feel fine except I still get really tired easily.
Sorry to have so many questions but you are the first person I have talked too with a low cd4 count. Again, thanks sooooo much for your response.
That is wonderful to hear about your counts being over 550! I hope to get there one day. I'm feeling better everyday and recently my counts went from 47 to 118....so I'm moving on up.
Thanks for your response.
How are you doing? Are you feeling a little better? It's a little over a month after my initial post and I am learning more about hiv/aids. I am still down some days but for the most part, I feel alright. I'm sure I need to talk to someone emotionally as it still brings me to tears thinking about the social stigma. I try to read all the information I can find. Sometimes I get tired of focusing so much on it. I take my meds faithfully. My recent labs last week show my cd4 went from 47 to 118. I'm happy about that. Keep your head up!
Zozzyja66, I've just realised that you said your cd4 count was 47...same as mine.I was never ill all these years, I'm really surprised. Thinking about the memory thing now that you mentioned it, I had poor memory but I always put it down to stress. But as soon as I started the meds my brain is sharper. We are lucky to be alive aren't we?
Zozyja66: Everyone is different. Some people experience serious health issues while being HIV+ and having a high CD4 count while others are like me, living life as usual yet having had an immune system that was almost wiped out. I never knew I was infected as I felt fine for all of those years. It wasn't until the unexplained bruising and facial marks appeared that I was diagnosed. And it had been this way for 10 years! I never even had so much as more than a cold and was able to deal with it like everyone else. God works in strange ways.
My doctor told me that two things define full-blown AIDS: a CD4 count less than 200 or an AIDS-related illness. He said that although my illness is gone (the KS--my body actually got rid of it as my immune system repaired itself) and my CD4 counts are above 200, I'll always been known on paper and statistics as an AIDS patient. However, he said that is only for the CDC's record-keeping when in all actuality, I'm now a person Living With HIV (LWH).
The rash you're experiencing is from the meds. That's a known side-effect. My doctor told me that it can show up at any time no matter how long you've been on them. He said it goes away in time, so just hang in there. If not, or if it's unbearable, you can be switched to a different med. Are you on Atripla? That seems to be the first med they try today. The runs you have could be related to anything: the meds, the virus, your nerves. My doctor also told me that I would experience mild fevers as my immune system repaired itself. Seems that as your CD4 counts go down, it's slow enough for the body not to notice. But when the body starts to build them back up, it tries to do it quickly and the rest of the body can't keep up resulting in fevers and headaches. I never really had any of that going on (or maybe I did but just popped a Tylenol thinking it was a normal headache).
I did everything I had always done before I was diagnosed when I knew my CD4 count was below 200. I had no choice. I had to go to work and get on with my life. I did make sure, though, to stay away from small children or areas where they would have been since they tend to carry anything and everything. My doc had advised me against any travel outside the US until my counts were high again (which stands to reason). Even now, he said I should never contemplate going to exotic countries or jungle-like places again since they carry diseases we've never heard of before.
I noticed I had more energy when my CD4 counts improved. I never really knew I was getting tired before then, but I did notice the difference after.
Always know that LWH is no longer considered a death-sentence. It is now regarded as a manageable chronic illness. You will live a long and beautiful life. You will have more of a chance of dying from a car accident than you will from this virus.
As hard and crazy as it sounds, try to put this illness out of your mind. It won't do you any good being in despair or constantly thinking about it. Life is worth living. We each have a purpose. That's why we're all here!
Your posted response is encouraging. I'm happy to hear your numbers are better. I had my first lab result since starting the meds and went from a cd4 of 47 to 118. My viral load went from 360,000 to 299. Pretty amazing, huh? I'm hopeful my numbers will continue to improve.
I had my first experience on the dating scene of disclosing my status. It is a heavy conversation to have but one I feel is so necessary. For me, I can protect myself from the level of hurt caused by rejection if I disclose even before any sign of intimacy. I just want to lay it all out there (no pun intended) so we can either get over it or step around it. On one hand I had a guy tell me it's something we can work through if we chose to pursue a relationship and he will be there for me. I haven't heard from him in a couple of weeks now. On the other hand, I had a guy suggest we consider couples therapy so he can learn more about hiv should we decide to become more than friends. Both guys are negative. It is not an easy discussion.
jake99, your post is encouraging and very informational. Thank you. Like you, I was living with the virus for years without any knowledge. The signs I had were so general, they could have easily been dismissed like the headache thing. I was also not a sickly person so most colds and illnesses would miss me. If it weren't for the thrush, I would have never gone in and had the test. The doc suggested it. Which leads me to ask you, did you ever get a 2nd opinion? I'm wondering if I should have done so. The doc gave me the news and referred me to an infectious disease doctor. It makes me wonder if they confirmed it through blood tests or just used the lab results to determine the type of treatment I would best respond. My treatment is not atripla but rather lexiva, truvada, norvir, and smz. my first results from last week showed my numbers up from cd4 of 47 to 118 and viral load from 360,000 to 299. I was quite pleased with that.
I don't feel I'm in denial or anything but I wonder what the likelihood would be of being incorrectly diagnosed. I'm sure it happens but probably not often. Especially in my case where my cd4 count was so low.
Although it has been killing me to stay away from my grandchildren since they have each been sick with stuff from daycare going around. I know it must be done for my own safety. I am conscious about that. I was not aware of my status when i went to Africa in June. I was diagnosed in August. I exposed myself to the risk from traveling to other countries. I love to travel but have realized that going to certain places is just too risky...especially at this low level. Although I'm happy with the improvement of my numbers, I know my system is still very low.
Today I went out in the cold to the store and when i returned, it was raining hard, cold, and I did not have an umbrella with me. To make matters worse, I forgot where exactly I had parked my car. I felt so stupid for going out and risking catching a cold when my numbers are still so low. I try not to beat myself up about careless decisions like that. It does make me more aware in faced with similar situations.
I agree that we each have a purpose and life is still worth living. Again, thanks so much for your encouraging post!