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HIV Health and Treatment Issues >> Treatment & Side Effects

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glowstixboyoh
New User

Reged: 04/01/05
Posts: 5
Loc: Dublin, OH
Starting meds for the first time.
      #140544 - 04/25/05 04:23 PM

Hi everyone. I am a little angry right now. I was diagnosed poz on march first of this year. I just got my lab results back and people think I should start meds. Its seems to them the virus is newly aquired, but it also looks like my immune system was low to start out with. They say that each person is different so it is possible I just have a lower amount of blood cells then the average person. It just makes me angry to have to deal with this all at once. I have accepted the fact that I'm poz, but I think the hardest part is having to go on meds so soon. I am just afraid of messing it up and becoming resistant I think. Does anyone have any advice. I qualifty for a new medical study so I will get my meds free for 2 years. Any thoughts on this?

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shadow1
Veteran

Reged: 12/06/00
Posts: 1209
Re: Starting meds for the first time. new
      #140585 - 04/26/05 10:18 AM

GSB,
You have many options and many things you can do. The numbers in the beginning still have a chance to come back closer to normal after acute infection, they have a tendency to get better before they get worse again after you first become infected. A large percentage of people can go 10 or more years without treatment with a good partnership between you and you medical professionals and regular monitoring. One key thing is to work toward keeping your body healthy and somewhat fit and that makes a big difference in how your body reacts to the disease. I was infected in 1989 and did not start meds until Jan. 2004. Not everyone is that lucky but with a little work you may be able to maintain your health for a period of time before needing to actually start medications. The best thing is to find a doctor that will work with you in a partnership for your health, with monitoring and options. Find one that is well versed in the disease and who can also be your primary treating physician.

Good luck.

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Mtlfriend
Unregistered

Re: Starting meds for the first time. new
      #140817 - 04/27/05 04:46 PM

First of all I understand that you are angry. I am going throught exactly the same thing as you ! I was telling myself that I am now hiv+, can I just at least have the time to cope with it. Well it is not worth staying angry cause life has so much more to bring to us. So now you have to take meds, as I will probably be obliged to also ! Let see this in a "positive" way ! We will stay healthy and enjoy life in a positive manner, as much as we can, and accept to be angry once in a while. But if it last too long, we'll have no choice but to fight our angryness !

Take care of you and don't be afraid !

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Anonymous
Unregistered

Re: Starting meds for the first time. new
      #140821 - 04/27/05 05:35 PM

When you want to have an HIV test, you need to wait at least 3 to 6 months to have a test for you to get an accurate result because normally it takes 3 to 6 months before the immune system can produce an antibodies against HIV virus. This is called the seroconversion period or window period. During this period you will expect that the immune system is very low because the HIV virus can re produce very fast and so they out numbered the lymphocytes(immune system). Maybe you're still in a window period that's why you have a low immune system. But, after a while once the immune system already produce the antibodies the HIV virus will gradually decline because the immune system is able to fight the virus. But, I think you should ask your doctor what is your CD4 count ( the level of your immune system) because it's a common practice that the patient will only start the medication when the CD4 count drop to 300 below and in some country 250 below. You can talk to your doctor about this and ask why do you need to start taking meds at an early stage. There's nothing wrong in starting meds early, in a way it will help boost your immune system. About becoming resistant, don't think about it yet because you haven't started taking meds anyway. Again, the best thing to do is to talk to your doctor and clarify everything.

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Anonymous
Unregistered

Re: Starting meds for the first time. new
      #140822 - 04/27/05 05:43 PM

Dear GSB,

I had a similar experience -- was infected for just slightly over a year, but labs showed very low t-cell count (210) and extremely high viral load. I was exhibiting symtoms as well (seizures, swollen/infected lymph nodes), though I was sure it was not HIV related until the test results came back. My doctor -- a highly recommended HIV speciaist who I trusted -- advised treating agressively, and I immediately went on meds. It was a bumpy ride for the first 6 months, due to the meds available then and my reposne to them -- liquid Norvir was a nightmare -- but this was over 6 years ago.

I'm now quite healthy, great t-cell count, undetectable viral load, though I won't say I've ever completely made peace with being poz or with the drugs. But I have a good life, albeit a good bit more complicated than when I was negative. Taking the drugs is now simple, once a day, with few noticable side effects.

My recommendation -- get medical advice that you trust, use sites such as The Body to double-check the info (e.g., established guidelines for starting treatment are available here to use as a baseline for your own treatment), develop a support group of friends you trust or an HIV support group so you can talk things through.

Don't be pushed into starting treament until you have all the info for your specific case and you feel it's the right decision, which I should now have if you are receiving effective medical care. The fact that you are in doubt leads me to think you may need a serious chat with your doctor about your proposed treatment, and if you still feel in doubt, seek a second opinion.

And being angry is not in itself a bad thing -- it can help motiviate you to get the right care you deserve. Just don't be angry at yourself.



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Anonymous
Unregistered

Re: Starting meds for the first time. new
      #140834 - 04/27/05 06:32 PM

Hey -
I know what you're going through. Deciding whether or not to start meds was probably the most difficut part of my process and maybe the most difficult decision I've ever made. I did start right away, but I think it's a really personal decision that you need to make for yourself. You're smart to consider whether or not you can stick to taking the meds. Because if you do start, it's absolutely critical that you never miss a single dose. One thing I'd recommend is to make sure you get a second and maybe even third opinion regarding whether or not you should start from doctors that do primarily HIV work. I got very different advice from different doctors. Be prepared with questions when you go in so you can make the most of your time with them. Good luck.

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Anonymous
Unregistered

Re: Starting meds for the first time. new
      #140842 - 04/27/05 08:05 PM

My thoughts are really with you. I love you and hope you will have a happy and healthy life. I have been poz for 18 years and through my own stupidity went on and off drugs for many years. The side effects were a bitch for me but that does not affect everyone!!!!!!!! I started off with the AZT trial in Australia and then progressed throgh various cocktails until about I tear ago I nearly died due to not taking meds and the Viral Load was sooooooo high. But now I am back on them and alive enough to whinge about the side effects. Life is so precious and I know we pump poisin into our systems but it keeps us aive and I live in hope that a cure is around the corner. Please take care, remember the decision is yours and the offer of free drugs is good. We all love you namatter what you decide
Mike
dickcrazi@hotmail.com

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Anonymous
Unregistered

Re: Starting meds for the first time. new
      #140847 - 04/27/05 10:57 PM

be patient about going on meds. wait until you have more information, such as what, if any, med resistancies your particular strain of the virus has. also keep in mind that t-cell levels and viral load levels fluctaute wildly in the first few months. it's not uncommon to see an extremely high viral load and an extremely low t-cell count. be patient, find a good hiv specialist and get a few opinions from hiv healthcare workers and hiv positive friends. feel free to email me poznsocal@hotmail.com if you need to talk to someone. i was diagnosed in oct of this past year and know exactly what you're going through. find a good doctor, a great support group, be patient about medication treatment, and learn to live life.

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Anonymous
Unregistered

Re: Starting meds for the first time. new
      #140874 - 04/28/05 04:34 AM

HI

I was also recently dignosed. My Doctor said its not necessary for me to start medications because my CD4 coun t and my VIral Load are still good. I wll go back again in August to check my CD4 and Viral load. I'moinly taking vitamin supplements every day and making sure that I live a very positive life and I think it will be a while before I start medications. I think you should seek the second oppinion and also i suggest that you ask your doctor about your cd4 count. GOOD LUCK.

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Anonymous
Unregistered

Re: Starting meds for the first time. new
      #141008 - 04/28/05 04:40 PM

I, too, have been going through similar feelings. I was diagnosed as HIV+ on 10/6/04 and my CD4 count is below 300. My physician, who came highly recommended, recommended starting treatment but only at my own agreement. I had only begun to accept and process my status when this was all dropped into my lap.

I thought about it and thought about it and discussed it with my closest friends. I decided to begin treatment and see if my CD4 count could rebound and if my viral load could decrease. My viral load was not over 10,000 by the way.

The first round of meds I took, I had a horrible reaction. I woke up one morning and it appeared as though I had malaria. I had this horrible rash, but fortunately it did not go above my neck. I got very scared and wondered if it was even worth trying the meds.

I then began a new regime and so far, so good my friend. My energy level is returning and it's giving me an entirely different outlook on life.

As most have reflected we are all respond differently to medications and there is nothing wrong with that. Don't ever forget you are not alone. We are all in this together for the long haul. Keep your head up and keep talking about it. You are taking the first step in coping.

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Anonymous
Unregistered

Re: Starting meds for the first time. new
      #141063 - 04/29/05 03:42 PM

I was diagnosed two years ago in January 2003, and at the time my doctor thought I wouldn't need meds for two years or so. As it turned out, several months later in May, the numbers were going in the wrong direction and we started meds (Sustiva and Combivir to start). I have to admit that the side effects were difficult at best, for seven months, until I switched Combivir for Epivir and Viread (now using Truvada). My viral load has been undetectable since I started, and my T-cell count remains over 1400. In addition, the meds have not adversely afffected my liver or cholesterol.
I too was nervous about starting meds so soon after diagnosis, but I also felt that if there was something that we could do about it, we should, and I have not regretted that decision despite the side effects. Don't be nervous about it, just pay attention to your overall health and try not to obsess about your status. Best of luck! you can email me at jlag321@aol.com if you'd like to talk more.
Joe

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LABob
Unregistered

Re: Starting meds for the first time. new
      #142702 - 05/04/05 09:28 AM

I hear what you are saying. I started meds one month ago today and am going for my blood work later today. We are fortunate , treatments have come a long way. I take two pills at 10:00PM Sustiva & Truvada and fortunatly with no side effects. My Doctors tell me that this is kinda the "Gold Standard" right now. Better yet, the two manufactures of the meds are working to combine the two pills together so by this time next year, I will be only need one pill a day. So remember, things could always be a lot worst.

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Jeromy
New User

Reged: 04/30/05
Posts: 6
Loc: Colorado
Re: Starting meds for the first time. new
      #143826 - 05/05/05 09:19 PM

I begin meds tonight...I have been accepted into a clinical trial, so I am not sure if I am taking placebos or the real thing yet. i guess I will know when and if I have any sort of side affects...but hey, things could be worse, you are absolutely right about that.

--------------------
Jeromy Dunn
Brighton, CO
Dx: 01/17/2005

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Anonymous
Unregistered

Re: Starting meds for the first time. new
      #145495 - 05/11/05 03:32 AM

Hey, I feel you but I think that taking medication is good. I was diagnosed lat July and started medication in October. Didanosine, Sustiva and VidexEC. At the beginning I did have some side effects but now I've settled into the regiment. I take them like I'll take vitamins or painkillers and don't see HIV as a death sentence. The effect has been tremendous. My T cell is now undetectable and CD4 now 290. I feel much better. Stay positive and don't let this get to yoiu. Have a fighting spirit. U'll soon be much better. I thought I was going to die when I was initially informed cause my partner had died from AIDS but here I am strong and healthy. I'm doing all the things I used to do and even more. Take each day as a gift and live life well. God bless

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debtex
Veteran

Reged: 03/21/05
Posts: 846
One day at a time... new
      #146532 - 05/14/05 02:39 PM

Hey glow.....
I understand your fears about the need to start meds before even totally absorbing being positive. I was diagnosed in October, and by late November, picked up an awful bug...but didn't shake it for MONTHS. I found out late november, that my cd4 was less than 300...so now I'm thinking...oh my God..I am probably not going to fully get better. And I just switched doctors, so he didn't put me on ART right away. (but did start bactrim and thrush medication...which started to become nonstop because of the bactrim...allergies). I thought I was giong to die...before I was even able to appreciate life. (becuase as we all know, being positive gives each day as a gift).
But after 6 months when I got better, went on meds, and like you....was scared of "resistance" (that fearful word in the hiv dictionary). But as much as I hated the side effects and what they did to me....I knew (in some way) they were like my life line. What would help keep me alive, how could I forget to take them, when I am thinking about hiv almost all the time.
So, I think you will be okay in that aspect of it. You are very sensable, most people who wind up building resistance and irresponsibility about taking their meds are usually not doing the right things in life anyway.
God Bless you and Good luck, please keep us posted on how you are doing?
Love and prayers,
Deb

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