I need advice

I was diagnosed June 2011 and ever since my diagnosis, my CD4 has been deteriorating. I was sitting at 393 and my current count is 330. My doctor suggest I start considering taking ARVs. I'm just so confused at the moment and would like to hear from people who are on meds and when did they start taking treatment? I'm only 21 and for some reason, I'm reluctant to start. I just need a bit of insight of what lies ahead and will I not be in risk of organ failure later on in the future due to the toxicity of meds? Any advice is welcomed.

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Mariatmejia's picture

HELLO SWEETY!! I REFUSED MEDS FOR 10 YEARS AND MY IMMUNE SYSTEM GOT DESTROYED! DONT LET IT GET TO THAT POINT. BELIEVE ME YOU DONT WANT TO LET THE VIRUS TAKE OVER YOUR BODY AND DAMAGE YOUR SYSTEM. I WAS VERY YOUNG WHEN I WAS ASKED TO GET ON MEDS..I REFUSED BECAUSE THE ONLY THING BACK THEN WAS HIGH DOSAGES OF AZT. IT IS NOT LIKE THAT ANYMORE..START ASAP!! BELIEVE ME YOU DONT WANT TO GET REAL SICK AND END UP WITH SOMETHING STRONGER ! SAVE THE TCELLS THAT YOU HAVE NOW <3

LOVE AND LIGHT

MARIA

BTW..I HAVE BEEN ON MEDS NOW 12 PLUS YEARS AND I AM HEALTHY AS A HORSE AND I WILL BE 40 NEXT YEAR AND I DONT EVEN HAVE WRINKLES! MAKE SURE TO DETOX YOUR BODY AND COMBINE BOTH ALTERNATIVE TREATMENTS AND YOUR ARVS! CONTACT ME ON FACE BOOK MARIA HIV MEJIA IF YOU NEED MORE ADVICE.

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Maureen's picture

Hey diva.
Its not the end of the world but a start to a new one, email me on missjones_u@yahoo.com
Let's talk, hoping to hear from u soon.
Keep strong, the world loves u my sweetie
Love
Miss Jones

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ellejay's picture

Hi Sassi

I can only share my story, not give advice. It's a bit like Russian roulette! I was diagnosed Aug 2010 - I 'knew' I'd picked it up 3 months before. Even though I've always been really healthy, work outdoors, wholefood veggie, non drinker and very light smoker, I deteriorated very quickly. I was absolutely gutted and dismayed, I tried diet, homeopathy, healing, acupuncture, supplements and meditation, but my CD4 kept going down. I was absolutely terrified of taking ARVs and it went completely against my philosophy, ethics and attitude towards healthcare and life in general. I started meds about 6 months after they advised (10 months ago) when my CD4 dropped to 120, I felt 'bone weary' and my bloods showed my bone marrow function was 'depressed'. My doctor said it was just genetics and some people ride over the virus whilst others crash. I felt that I wasn't going to win against the virus and that the only other option was a slow and complicated death, much time spent in hospital. My back was against a very hard wall.

I fought hard to go on a regime which is 'Nuke free' some information came my way which made me feel they are worse than other strands of medication and I just couldn't start until my consultant agreed to give me Norvir boosted Duranavir (protese inhibitors) and Raltegravir (integrase inhibitor). I got stiff joints and crazy itchy skin for a few months which then wore off and heart arrhythmia which still persists intermittently. Otherwise my energy is still good (6hrs + gardening per day) but my cholesterol has risen (used to be very good) and I'm getting fat accumulation round my middle. My CD4 rose to 285 within two weeks of starting. It's now around 350. Viral load was 400,000(!) but is now around 50/60. Not everyone becomes 'undetectable' even on Nukes. I am very conscientious about taking the drugs as I don't want this plan to fail.

I have no idea what the future holds non of us do, the drugs are toxic without a doubt, but we're all made differently so nobody can predict what might happen. I have read many user reviews stating that they are side-effect free on lots of different combinations including Nukes, so...? I understand your struggle, my heart goes out to you, you will know when/if it's time to start, listen to your body as well as the medics. If you want to email direct to ask any questions or for support post your email address and I'll get back to you.

My thoughts are with you love and hugs

L.J.

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dasassidiva's picture

dasassidiva@gmail.com
I would love to hear from you

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Dianne's picture

I have been on meds for 18 months and had to go on them immediately due tomy cd4 being 40. I had a number of opportunistic infections that were.ife threatening. Without the arv,s this is what you will endure and it is overwhelming, I am starting to get back to normal after almost two years but it was a hard journey, reactions to meds to treat OI,s are far worse than the so called toxicity of the arv's. Taking the arv's I saw myself come back to life! 300 is bordering on a aids diagnosis and you don't want your body to endure the results of damage caused by this. I would encourage taking the arv's as having a undetectable viral load is the best feeling, positives of this is reduced risk of infecting anyone else as they now say there is a 96% chance of NOT infecting anyone with a undetectable viral load. For me the arv's mean LIFE and the new research now says aging with the meds is close to normal with a fairly full life expectancy! Hunni life on arv's is all good news, the fatigue reduces and you feel normal again. As for toxicity my understanding is the current meds are not to damaging, but your doctor will regularly monitor your heart, kidneys and liver functions and adjust accordingly as you respond, you really have two choices arv's Life, no arv's damage to your body through OI's and imminent death. This response is based on my personal experience after diagnosis in 2011. Honey keep strong and positive and please keep us posted as to how you are doing and big hugs my sister.

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lovinglife101's picture

I was infected in 1985 so I have been positive 27 years. I have been on many different medications starting with AZT, when it was the ONLY medication available. The medications today are much easier to take and have less side effects than they did years ago. They work and they have saved thousands of lives.

It is much easier to maintain your immune system than it is to rebuild it. Most days, the only time I think about being positive is when I take my pills. I feel wonderful, I look amazing, LOL, and I am working on my PhD.

Please take care of yourself. The medications available today allow us to live normal health lives! Please keep us updated and I will keep you in my prayers.

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jae001's picture

I started taking medications while I still asymptomatic. My counts got to 300. I decided it was time. I didn't want to wait until I was in the hospital before starting. I haven't had any horriable side effects. Some irritating ones, (abnormal fat) but nothing that keeps me from living a "Normal" life.

However, a few years earlier while I was pregnant whith my 3rd child I did take AZT (it was the only thing available) but stopped after he was born.

I tested HIV+ 21 years ago... I have been on meds for 15 years. CD4 1100+ & VL undetectable.
Good luck to you, keep us informed!
Love Jae

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bi0138's picture

lovinglife101 please send me ur email address at missjones_u@yahoo.com

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Angela's picture

Hey Baby Girl. Lots of advice on here. We all know what it's like to decide to take the toxic meds and the feelings you have when faced with that. You are sooooo not alone!!!!! I myself have been on meds for 16 years now and doing fine. I do have health problems--fibromyalgia and neck and back problems but these are NOT related to HIV or the ARVs. I have been on MANY different meds as I am bad about being compliant but recently was put on Complera--once a day---Finally a pill I can hang with LOL. It will be OK Baby Girl. Been positive 22 years and had two planned babies that are now 13 and 18. So life is good. Life doesn't end just because we are HIV but we do have to listen and be our own advocate when the doctors tell us something. I hope you have a doc you trust, if not GET ONE. I have been through 6 infectious disease docs because I don't take any crap. My changing was mostly because back then they didn't know much about women being positive having babies and I was dogged and put down often so I switch until I found a doctor that wouldn't judge me.
My point to all of that is--it will be ok--you are not alone---meds are toxic but it's all we have Baby Girl to keep our t-cells up and our viral load down---Hang in there and follow your heart and continue to seek advice from all of that have been around for a while with this virus. You did the right thing in blogging. You will help many by this blog!!!!!!!!
Much love to you Baby Girl!!!
angelakrebs74@yahoo.com if you need me or just need to talk.

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positivelysweet's picture

Hi sweetness. Im 31 years old and was diagnosed 11 years ago. I only started taking meds last year in Decemeber when my CD4 count was down to 91, which was not good at all. The sooner you start, the better. My cd4 count has more than doubled since then and I am fit and healthy. There is nothing to fear about taking medication. I didnt have any serious side effects. If you need to talk, please send me an email at positivelysweet2012@gmail.com. Im in Johannesburg so we can chat if you want

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