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Author Topic: Hello all... Just a couple of questions  (Read 4413 times)

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Offline Rev. Moon

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Hello all... Just a couple of questions
« on: July 06, 2009, 09:43:42 PM »
First of all let me say that I have been visiting the forums for almost a month (just reading, did not feel like I had anything to contribute since I am a newbie).  I registered a couple of days ago and hope to find some good mates and support; several people here (Ann and Andy Velez come to mind immediately) seem like such great people with a vast amount of knowledge.

So here's the story.  I fell sick on May 27th with a series of symptoms that the doc at the urgent care room believed to be strep throat, so he prescribed Amox (Augmentin).  With that and some theraflu I sort of felt better, but after two days i had this odd non-bumpy rash on my face (not itchy, not warm).  I stopped taking the antibiotic and it went away. Other symptoms I had were a fever for about 5 days in the 101F range, diarrhea on the first day, extreme fatigue, malaise, sore throat, and swollen lymph nodes... I also had constant pain in my triceps that I imagine would be considered myalgia.  Something within me told me that I had probably been infected during an unprotected encounter on Mother's day.  I know that you won't judge me, but I still need to say that depression (as a result of a "broken heart"), low self-esteem, and alcohol are things that should not be combined.  

On June 3rd I went back to my doctor as my forearms and upper thighs showed a similar rash to the one I had experienced on my face (not bumpy, not itchy, not warm).  My doctor referred me to an infectious diseases specialist.  She agreed that it might be mono, but ordered a series of tests just to be sure.  Among the tests was a PCR RNA HIV test.  

On June 10th she delivered news that I was hoping not to hear (and, foolishly, I thought it was going to be mono and that was the end of things).  The PCR showed a very high viral load of about 1.4 million.  The symptoms, combined with the numbers (and the fact that I had done something unsafe recently) led to the conclusion that I had (or was still) undergone seroconversion.  I would list here what I felt at that moment, but this post is getting long enough.

The doctor was very kind and gave me all the info that I suppose is necessary at that shocking moment.  She suggested that we discussed options.  After discussing Atripla I decided to go for it right away.  She then ordered additional blood work to determine my CD4 count, genotype, and other things.  I started taking the meds the next day.  We met again about two weeks later and the CD4 count came back at 425 (or 450, I cannot remember now; I was upset that it sounded so low).

My questions would be:

1. While additional blood was drawn last week for an ELISA test, I still don't have that result.  But the high "viral load" in the PCR, combined with those symptoms that I had would for sure be indicative that this was not a false positive (I have heard so much about PCR not being accurate) and that I indeed was seroconverting, right?  I have already accepted my positive status, disclosed to it my beloved ones, and try daily to get ready for my new life.  Should I have waited for the ELISA or WB tests?

2. Did I jump too quickly into therapy?  I have tried researching about people starting meds right after (or during) seroconversion and I cannot find a thing anywhere.  I was fortunate to not experience side effects so far (only complaint is that my sleep has become inconsistent and I am concerned about renal issues, as I am noticing that this past week I don't pee as frequently or as much as I used to).

I appreciate any feedback.  Please excuse the super lengthy post...

Best of wishes to all here.
« Last Edit: July 06, 2009, 09:48:50 PM by livebythemoon »
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline positivmat

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Re: Hello all... Just a couple of questions
« Reply #1 on: July 06, 2009, 11:52:24 PM »
First of all, sorry to hear of your diagnosis. This is a great place for info and support. Reaching out shows that you care about yourself enough to get active in your health and that will bode you well.

I will let the others answer #1 but as for #2, I went for atripla within months of my infection. For me, I think it is a good idea because of the early damage that hiv does to the body. I felt like it put me in a position of power over the virus and improved my feelings regarding the disease. I also like that it added some protection to my partner by reducing my viral load.

However, I had trouble with the atripla and depression at the beginning.  There is  a study that says they can ease you into the efavirenz portion of atripla and reduce the nervous system side effects. You might want to ask you dr abput that. If it is too late for that in your treatment, you might like to know that my side effects decreased to nil over 6-8 weeks. I had sleep issues, mild but constant and noticeable depression and a few days of dizziness and drunk feeling. Since you mentioned alcohol and self-esteem issues, you might want to keep an eye on these side effects if you have them. Mine went away and I am glad to be on a once a day med that fights this virus so well.

However, many here do not advocate early medication. (For one, these meds are relatively new and don't have the track record of more established meds- why put them in your body if you can wait?). Non medicated positive people will give you their reasons and you should take an active role in this and decide for yourself what you think. Investigate both sides.

Take care of yourself and keep in touch. You will find a lot of info and support here.


Offline Ann

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Re: Hello all... Just a couple of questions
« Reply #2 on: July 07, 2009, 10:03:38 AM »
Hi Moon, sorry to hear about your diagnosis, but welcome to the forums.

The RNA PCR is the one that is approved for diagnostic purposes - the DNA PCR isn't as it's more prone to false positives than the RNA. False PCR results typically have low numbers, usually under 1,000. With your very high result, unfortunately a false positive can be ruled out. The high number you got is totally consistent with acute primary infection. Your CD4 result is good, especially considering your high VL.

Whether or not you jumped into treatment too soon is a matter of debate. Some believe it's a good thing to start right away when the infection is caught during or just after seroconversion, others think it's best to wait and see how the body does on it's own. If you had waited, you could have expected your VL to come down and your CD4s to go up. This might have happened in a month or two, or it could have taken as much as a year for the numbers to improve and stabilise.

Seeing as how you are adjusting to the meds well, I'd say it's not a bad thing that you started when you did. You could have waited, but it's pretty much a moot point now. There may also be the possibility of taking a break in a year or two - this is something to discuss with your doctor and only do under your doctor's supervision.

You need to be aware that now that you're on the meds, you need to take them every day, without fail, as much as humanly possible. Missing doses can lead to resistance, which means changing your combo and limiting your treatment options for the future. And speaking of resistance, it probably would have been prudent for the doctor to wait for your genotype results before putting you on meds. It is possible to become infected with a virus that is resistant to some meds and it's good to know if this is the case before prescribing. However, if your genotype does come back with resistance showing, you can simply switch your meds.

If you haven't already, please check out the lessons on the subjects of Treatment Questions, and Things You Should Know Before Treatment, and another you should read is The Blood Tests You'll Need. We also have a drugs section where you can read up on Atripla and the three drugs that are combined in it.

To address your pee issues, the answer may be simply to drink more water. The drugs you're taking are heavy-duty and it's good to keep your system flushed out. Please do speak to your doctor about this as well. In the meantime, increase your water intake and see if that doesn't help.

Hang in there, you're going to be ok.

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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Offline Rev. Moon

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Re: Hello all... Just a couple of questions
« Reply #3 on: July 07, 2009, 10:39:33 PM »
Matt and Ann, thank you so much for replying... you have no idea how much your words mean to me at this moment.

Ann, I have to agree with you on the tests (that's why I did not fill myself with false hopes).  As far as meds, I have been taking my pill religiously at 10:30p.m. and then I do my meditation/prayers and go to sleep.  I was so fortunate to not experience the bad dreams and other scary side effects that some of our fellow HIVers go through.  Besides a minor rash that lasted less than two days everything has been good so far.  I am very hopeful that I will see good numbers as far as VL and CD4 are concerned within the next month and thereafter. 

Thank you for the advice on more hydration.  The more that I realise it, the "lack of pee" happens in the earlier parts of the day (as the medication is probably more potent).  After 6p.m., as long as I drink water regularly, the frequency of urination seems normal.  I will still check with the doc tomorrow.

Matt, I am glad that you pointed the depression and alcohol.  I have to clarify that I was not a heavy drinker or someone with a drinking problem (just loved beer once a week); on the day when I did my foolish act I had just been drinking wine in order to relax about being sexually involved with someone.  Ever since the diagnose I have had one beer on Saturday while having lunch with my best friend.   Probably will eliminate alcohol altogether for a while.

The depression has gone away.  I have days when I cry a little while (I imagine that this is normal adjustment since I have known my status for less than a month).  The tears happen mainly when I think of my family having to endure any sadness or suffering if I ever become ill.  I have always been pretty well adjusted when it comes to accepting death and my own mortality; I don't see myself becoming suicidal or hopeless about life.  I do however still deal with some great fear of illness (but for some reason my main concerns are always my loved ones), the idea of my virus being resistant scares me as it would probably make therapy a bit more difficult (but this is a subject for me to continue educating myself on).

I am glad to see that you have a partner who is there for you.  I hope that someday I can find someone to share life with.  One of my first reactions was the fear of becoming "unlovable" or "untouchable."  I have moved beyond that fear and sadness. 

All in all, I am surprised to find myself feeling and being more "positive" (I hate the fact that such a good word has to be normally associated with the virus), less afraid, more willing to discover what's around me, to smell the air and enjoy the beauty around me.  There are a few moments here and there when I get irritable, but they last a lot less than before HIV.   I am making sure that I let my family and close friends know that I love them.  I have suddenly re-discovered some joy in my previously boring job (it helps me keep my mind off the HIV subject).  I have faith in the higher powers that all is going to be well. 

Best wishes to both of you.  I hope that we keep in touch.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline anniebc

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Re: Hello all... Just a couple of questions
« Reply #4 on: July 07, 2009, 10:47:48 PM »
Hi Moon

I have nothing to add, Ann as always has given you some good advise and insight to your situation, and Matt also, I just wanted to welcome you to the forums, I hope you hang around and get to know us a little better we are not such a bad bunch here..like all families we have our ups and downs, but we somehow manage to get by.

Look forward to hearing more fromyou.

Never knock on deaths door..ring the bell and run..he really hates that.

Offline Rev. Moon

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Re: Hello all... Just a couple of questions
« Reply #5 on: July 08, 2009, 09:19:48 PM »
Thank you Jan :)  I plan to stick around and get to know y'all better.  Maybe in time I'll be able to provide advise and support to other members.  I hope that we have more ups than downs in the years to come.

Hugs right back atcha.

Ps./ I got my Elisa and WB confirmations today: positive.  I am OK with that as I had been preparing myself mentally for nearly a month.  Additional blood work came back as well and everything was good (kidneys, liver, white cells); the doc said everything looked so good no one would ever imagine that I just went through the acute infection.  The genotype came back with good news in general.  She just warned me for now about what we'll need to consider in the future.  She said that in time there's a possibility that a particular medication could stop working effectively and that's when changes need to be made.  I pray that such a thing won't happen.  Right now I just feel quite ignorant.  I will need to learn more and more.

For now I just need to go back for more blood work next week so that we see what Atripla has been doing.  Hope to report some good numbers.

Blessings to everyone.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline anniebc

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Re: Hello all... Just a couple of questions
« Reply #6 on: July 08, 2009, 10:23:59 PM »
Hi Moon

I'm sorry about the the news you got today, but from your post it sounds like you are going to be Ok..you probably know all this already but just a couple of things I want to throw out there for you.
Reaction to the results is difffernt for everyone, over time you will find a way of coping with the virus that suits you and it might be quite differnt from how others deal with it.

No one here will ever tell you it's easy, it's ok to get angry or scared but don't let it take over your life, stress is natural it can actually help some of us get through certain situations but excessive stress can cause you physical symptoms and can damage your immune system further, just find ways to manage any stress you may be feeling, learn to relax and listen to your body.

Along with HIV comes anxiety, and one of the ways of tackling this is through information. gaining confidence in yourself and making informed decisions about your future.

Support is very important and you can get this from a qualified ID doctor , family and friend that you trust and there are many support organizations out there...just make sure whoever you discuss this with is sympathetic,supporting and non judgmental about your HIV status.

Most important of all is you have to remember that being HIV+ does not stop you from being the person you were before your diagnosis...glad you found your way here.

Jan :-*
Never knock on deaths door..ring the bell and run..he really hates that.


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