Will I die?

Forgive the macabre title but I actually think that it is possible. I was diagnosed hiv+ a week ago. I am pretty confident I have it 2 1/2 years now. Unfortunately it proceeded fast and my labs results I got today show CD4 182 and viral load 104000.

I've been feeling ok mostly but tonight I feel a bit weak and like having blood pressure issues.

Problem is that my clinic here won't treat me for a few more weeks.. they say I should stick to my appointment date with them and wait patiently. Something tells me I don't have so much time though..

30 Replies

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  • Sorry Dear, that you are feeling bad, Don't no way you have to wait, I assume it depnd which country you are. I don't think you going to die. You haven't got Aids! stay cam

  • I'm so sorry about your diagnosis. Don't lose hope though, I have been positive for 33 years and have a non detectable viral load and a t-cell count of around 800. My mom was with me at the Gainsville Florida infectious disease center in 1983 when I got the NEWS and we both thought I would be dead within the year and the doctors even told me I had at the most two years. Boy were they wrong. Also it's important to know that if you stay on your medications and keep your viral load non-detectable you can not pass the virus to anyone else. Early in the course of the disease passing the virus to someone else was just as frightening to me as having the virus and it's wonderful to know that is no longer a concern.

  • Hey you are the first person I have heard of who had their diagnosis in 83 like myself. I have so much trouble with people disbelieving me and saying the HIV test didn't roll out til 85 but that was when it was renamed from HTLV-3. I'm in London UK and they still were not certain if this virus was the cause of AIDS or just a coinfection. There were still some researchers who were convinced it was from too many poppers. Glad to hear from someone else who might understand what we experienced in those times. For me it proved that what doesn't kill you makes you stronger. I used to hate it when people said I was brave to fight so hard. I wasn't, it's just that I had no choice. Now if I try to access the services I need because of the effects from the drug trials I get treated as if I'm crazy. I've just been thrown off welfare because they can't see why I should have difficulty walking and decided I must be lying. It's tougher now than it ever was in the 80's. I could fight fear and prejudice but I can't win against an ignorant welfare officer who thinks she knows all she needs to about HIV. We are such a small part of the community that all services have ended. Nobody knows what a buddy is or what the quilt was. I hope it's easier for you in the USA.

  • Yes it is easier for me here from the sound of it. The test they used to diagnose me was the western bloc test which took three months to get the results. They drew blood in early December 1983 and I got the results the day before my 19th birthday, February 18, 1984. As the treatments improve it is getting more difficult to qualify for welfare here in the states also. I'm so glad to hear from another long term survivor. To me it's just amazing that you and I have the power to eradicate this disease. Now that they have determined that the virus can't be passed once you get your viral load to non-detectable eradicating the disease is just a matter of getting HIV+ people to adhere to their medication regiment. Good luck and keep in touch. I'm Larry if you would rather address me by name.

  • I agree wholeheartedly with you.

    Adherence is everything when living with HIV. I'm a long term survivor as well. Being diagnosed in 1987 using the Western bloc test also. The waiting was pure hell !!!

    I had to take a 2nd test and wait months to get the results, but I pretty much knew I was going to test positive. At that point, I just wanted to know who I could see for HIV treatment. My Dr was much more freaked out than I was.

  • Technically you do haveAIDS but don't fret...I was diagnosed with 1 tcell and the viral load in the millions. It's been 5 years now and I'm feeling well with a few hiccups now and then. If you get feverish go to the er or clinic, but otherwise sometimes it takes some tinkering around to find the right cocktail

  • My viral was 110000 n cd4 was 123 I waited over a month for meds but now undetectable n my cd4 is now at 948 don't panic listen to how the wanna play it if u wanna talk msg me X

  • Thank you Ant81! May I ask whether you took any Septin while waiting for your treatment to start?

  • Yes I took them too

  • That worries me a little because the doctors I saw today didn't tell me to take Septin. I could buy Septin from the pharmacy though on my own and start taking it. I am so puzzled about it...I really don't know what to do.

  • Where are you firstly ?

  • hi mate, I am only just starting to truely believe I am NOT going to die. I am 2 yrs in on meds 6 mths. I think its only natural when first diagnosed, to think/believe this is it, thats my lot. It isnt, not now the meds are real good. Can you contact your health professionals? my nurse & Dr at clinic were very reassurring, as every time I went I was in tears as totally terrified. Im sure this is how your feeling now? It is a massive shock to be told you have H.I.V but please trust others experiences on here, it will get easier. Theres a good support forum on Terrance Higgins website and a great place to say all your fears and concerns. I have learned that talking about all that bothers me about the H.I.V is the way to go, keeping it all inside just makes you feel worse.

    Hang on in there, it will get easier. xxxxxxxx

  • We are all going to die at some point but I am certain it you won't die from your illness. I was diagnosed 5 years ago with a CD4 count of 1, yes 1.

    It has taken me a few years to get my CD4 count to your level which is not a bad level to start at.

    The clinics know what they are doing and I do not think you have anything to worry about. Get on the medicine and get the viral load down and you will live a long healthy life.

  • Danish12 may I ask how you live your everyday life? I mean do you go out with friends, do you go to the gym etc. or you are more reserved in order to protect your health?

  • You do need to take your health seriously and think of your health by getting enough sleep and eat healthy but that said you still have to live life. You have been given a second life line so be grateful and use it to embrace your every day to its fullest. Being HIV is normal these days and should not restrict what you do. Get drunk and have fun (within reason) but please do not isolate yourself. You might not have the same energy at all times so find other interests. Reading a good book, museums, theatre, talks etc.

    I have been grateful for getting better every day and spend a lot of time in the gym and walking my dog. Both giving me time to reflect, relax and gives me a lot of pleasure. I also love to get drunk out with my friends. Most importantly do not push yourself until you feel ready. One step of the time and try things out.

    You will be fine I promise you. Might take time but you will get there.

    Keep talking to me if you find it helpful.

    Hugs

  • Danish, it's always nice talking to you!

    I enjoy drinking as well, but visiting crowded bars and consuming alcohol is something I don't see me doing again unless something changes radically in the future of course.. (some new therapy or cure)

    You said something wise: "You have been given a second life line so be grateful and use it to embrace your every day to its fullest.".

    There is no bad thing without a good side and to me this unfortunate new condition is a clear sign to start living a more substantial life.

  • Friend, in the 80s my CD4 count was 4. I even named them. This was not unusual and all we could take was Manuka honey, EL-80 which was a drug we made ourselves from olive oil and lecithin and cumbucha mushroom tea which turned out to be manky water that was full of bacteria. Nothing happens that fast and it's best to look a trends rather than act on one result. As soon as you start your selected meds everything is likely to spring back to normal. Just don't stress yourself.

  • My ex had CD4 of 92 and a viral load in the millions. Diagnosed with AIDS after 3/4 years of neglecting himself and his medications. His levels did bounce back after he got stable on meds though. Not sure how he's doing now but believe that you will be absolutely fine. In the meantime eat healthy, work out and try and be happy!

  • Thank you all for your comments, I appreciate them so much!

    Today I managed to find another clinic which really cared about me and did all they could to help me. They took blood to check my renal/liver condition, I saw 3 doctors and a psychologist...I feel hopeful now. Next Thursday I go back for more tests and soon afterwards I'll start therapy!!

    One thing worries me though. They did not ask me to take Septin even though I know they discussed about it..

  • Hi there, I'm sorry to hear about the tough test results. I'm just going through this right now. However I am concerned that they did not place you on prophylaxis anti-biotics. The standard of care is to start trimethoprim/ sulfamethoxazole (brand name Septrin/ septra) at cd4<200 to prevent infection with PCP pneumonia (pneumocistis jirovecii- previously carinii). Also I would be extra careful with handling items that may have infectious potential. This list is copied from Medscape but similar lists can be found around. But basically, wash all your food and be careful handling raw meat. But avoid:

    Cat litter and excreta of farm animals, wild animals, and pets

    Animal bites and scratches

    Persons with skin infections

    Raw meats and shellfish; unwashed raw fruits and vegetables

    Unpasteurized dairy products

    Drinking untreated lake or river water

    Human fecal-oral contact.

    Don't mean to scare you but if you're having really short doctor visits without getting all the info, I wanted to make sure you knew. You've got to be an advocate for your own health when you can, and getting on meds will help this all substantially.

    Long way to say, you won't die and you're not in the worst spot but while your immune system recovers help it out by being cautious.

  • Thank you so much. I do all that and while my partner is at home i wear a mask - i also sleep with a mask. One thing though is that I have 2 cats. I dont touch litter etc. but I am in contact with them.

  • What is the dose of Septrin to take, do you know?

  • Hi there, it's interesting you can get this drug over the counter- must not be in the states, lol. The recommended dose for the purpose of prophylaxis is 1 double strength tablet per day (Double strength is 160mg). There is the potential for allergic side effects or a rash and if you notice this or other symptoms contact your doctor or the ER immediately. This advice can't substitute for your doctors advice who knows your whole clinical picture better, but you can k is that this also is supposed to prevent toxoplasmosis which is the infectious concern from cleaning the litter box and is a concern at cd4<100- fortunately not your case. Handling your cats should be fine and wearing a mask isn't likely to alter your chances of catching something, but if someone is known to be sick just try to avoid them. So take off the mask, hug your cats and I hope this helps you sleep easier

  • Thank you so much.

    One of my new doctors gave me his facebook so I contacted him and he replied (!). He said I was not given Septrin due to possible allergy which I'd find hard to deal with on my own during the weekend. He also suggested to go out and only avoid crowded places and people who are ill or that sneeze (i prefer to stay home though).

    I was tested for toxoplasma and came out negative. Also someone else does the litter now, daily. The house is extra clean and my partner is wearing a mask as well most of the time.

    Worrying things will happen though like a casual cat scratch yesterday.

    I am counting the days to start my therapy in a week.

    May I ask something?

    Would it make any sense to start one regimen tomorrow (one without abacavar/given by an expert doctor) so that I don't loose time and then change to the proper one in a week once all my blood tests are out?

    If you could do that, would you do it?

  • I'm glad to hear that you got a rationale from your doctor for not prescribing the medication. Also sounds like you are taking some good precautions though I'd agree that going out would be fine but just to avoid sick contacts. Also with any scratch just clean it well with soap and water and bandage to keep dirt out. That shouldn't lead to an opportunistic infection.

    Regarding starting treatment- I'm right there with you. Thought Friday I would get on meds but my vital genotype wasn't back yet. So I told them to call me when it was so I could go back and get on right away. For you, I'd say that the difference if a week is not worth the possibility of taking a suboptimal regimen that could lead to drug resistance and impair regimen options in the future- it could even impair the efficacy of getting on the right regimen at the end of the week, because the virus could have mutated or overgrown a resistant strain that they wouldn't know about since they checked the virus before you started something like you're suggesting.

    And just bring on meds womt bring your cd4 count up in a week, so no reason to start 5 days earlier. Hang in there! You're taking precautions and often that's what makes all the difference. It's ok if you don't know something- just keep reaching out like you are

  • Firstly calm down your working ur self into a state ..... They only gave it to me as I was fighting glandular fever at same time ..... Listen to what they have to say in ur appointment they are the experts and will do what's best for u prvt msg me if u want to talk

  • Thank you!

  • Hey good morning, my advice is to give your mind and anxiety a break. I'm a long term survivor. In nearly 30 years, so many changes have happened on the HIV front. We went from not knowing what we had, to having poz people become undetectable 25 years later.

    There is always an adjustment period in your health care where the Doc's can now "customize" medication to fight HIV. These are called HIV cocktails. Before the cocktails came along, we were taking drugs not knowing if the side effects were going to make us more sick than before, or in some cases, we died from side effects.

    Those days are long gone. Thank god.

    Please be patient, as getting on the right medication is not a speedy road. It takes months, sometimes more to tailor the meds to your strain of HIV.

    I hope this answers some of your questions, and brings a little piece of mind.

  • I can't stress this enough. Trust your doctors. They have been caring for HIV positive individuals for over 30 years. They know what they are doing. It takes time for doc's to "customize" your medications to work for you. Sometimes, it takes upwards of 10-12 months to get you on meds that work for your body.

    The biggest key to living a long, healthy life is to take your medication each and every day.

    Keep it to a strict schedule.

    Take your meds approximately the same time every day.

    Be sure to eat something beforehand that has at least 500 calories.

    HIV meds need fat from foods to break down faster so they can be absorbed easier during digestion.

    When you first start meds, you will go through changes. You may get neausea, diarrhea, and not feel quite up to par. All of this will pass as your body adjusts to the medication.

    I hope that you take my advice.

    Peace

  • I'm sure you'll be just fine. People can have a cd4 of 0 and still live :-) mine was similar to yours when I was medicated and I felt really rough. I soon recovered, ps if you don't get on with your first meds don't worry you can change them!

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