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Author Topic: My Husband Just tested positive.  (Read 10264 times)

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Offline WorriedWife

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  • Posts: 82
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My Husband Just tested positive.
« on: May 15, 2007, 10:36:19 AM »
Ok I hope nobody minds but I would like to share my story with all of you in hopes that anyone can give me some advise on how to deal with all of this. I am so scared.

My Story:

In August of 2004 I left home and went to Iraq leaving behind my husband and 8 month old daughter. While I was gone apprentely my husband had an affair. We just found out that he is HIV Positive. Fourtunally, I tested and my test was negitave. I dont know how. I am relieved but I am still shocked that I am not positive. I guess my angles have been putting in some serious overtime.  :)

Im not mad at my husband and I dont plan on going anywhere. I am here for him and together we are going to make it through this. Is this strange? Should I be mad? Or even hurt? I dont even feel a little mad. Im thinking that their is something wrong with me. Anyone else I know would have taken the child and ran the other direction away from all of this crap. Is my love for him that strong? I guess it is because that is the only way I can describe it.

We went to the infectious diease doctor last week for the first time and they took more blood tests to find out what his T cell count is. On Friday the doctor called us and told us that my husband needed to start taking medication to keep him from getting phnomia ( sorry I cant spell that one :) ) and she told him that his T cell count was below 200. It is actually 191. I dont remember what his viral load is. Well that night I ended up taking him to the ER because he was having a hard time breathing fourtunally it turned out to be nothing. Is this going to happen alot? I kind of expect for him to have a hard time dealing with all of this and to blow everything out of porpotion right now but I didnt expect it to be this bad. How long with this last? How am I suppose to deal with this myself and help him deal with it also?

We are going on a trip with a couple of friends this week and I am hoping getting him out of here will help him not think about all of this. How do I get him to not dwell on this? I have told him that we will just take this one day at a time and not worry about what can go wrong until it happens. We will cross that bridge when we get to it. We go back to the doctor next week to start him on a treatment plan and I think after that things will get better (at least I hope). In the meantime I need to know how to keep my sanity along with keeping my family together and comforting my husband all at the same time. I have noticed that if he is thinking about it. It makes me think about it and all of the bad things that can happen. How can I keep from doing this? Is it just because this is all so new to us and we are still trying to accept it?

Please Help
WorriedWife.
"Everything Happens for a Reason"

Offline migue

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Re: My Husband Just tested positive.
« Reply #1 on: May 15, 2007, 11:05:07 AM »
Hi, your are my first post or email  on this site.  I just joined.   Im going through the same thing.  I have been healthy as a horse all my life, 36 yo, laywer succseful.., etc.  never promiscuous, but i had a condom break last summer.  Tested a few times in the folllwing months and tested negative.  I was re-tested a month ago and found out two weeks ago im positve.  My cell count is 250 and i need ot go on medication immmidiatly.  Honestly, I'm aslo scrarred shitless, since all I' have ever taken is aspririn and vitamins.  I see all my lifes work and plans go down the tubes, fast.   

I cant tell you all the things goign on in my head, but they are probably the same... " I'm going to die or this is a gay disease" thoughts going on in your husbands head.  Both he and you, need to take care of your phycological and physical needs at the same time.  Go and see a therapist, I did the next day, even though I've never bene to one.  This is bigger and both you and he. 

Like you, all i knew about hiv was put on a condom, dont exchange bodily fluids etc. I didnt know anything treatments, effects etc,. bodychanges etc.  Dont abandon him, at least until he has a handle on this.  Unfortunatly, I dont have anyone to hold my hand while I go through this, but please dont abandon him at this point.  Right now, I'm sure hes feelig nwhat im feeling, hoplessness and that his life is over.  Be by his side, and accpet whatever god gives you.  Miguel
« Last Edit: January 04, 2013, 03:24:14 PM by Andy Velez »

Offline WorriedWife

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Re: My Husband Just tested positive.
« Reply #2 on: May 15, 2007, 11:16:47 AM »
Migue,

This was also my first post to this site. Thank you for the reply. Im sorry that you dont have any support while you go through this. I dont plan on EVER leaving my husband. Over the past week all I have heard him say is I love you and Im sorry I am putting you through this. I think he expected me to run away. But I didnt and Im not ever going to. If you need anything you are more than welcome to email me I may not be able to hold your hand but I will listen. I am new to this so I dont know how much help I can be but I know that sometimes having someone to listen is a big help. My email is stacy_scott_us@yahoo.com I also have a yahoo messanger account stacy_scott_us. Thank you so much for the reply I am trying to stay strong for both of us but sometimes it is so hard.
"Everything Happens for a Reason"

Offline Teresa

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Re: My Husband Just tested positive.
« Reply #3 on: May 15, 2007, 01:05:39 PM »
Hi WorriedWife,

Welcome to the forums. I'm glad you found us.

Everything you are feeling is perfectly normal. Last May we found out my hubby was HIV+. I tested negative and like you was very surprised, and in shock. While we were waiting for my results I told hubby that no matter what we were in this together. When we got hubbys test results he had AIDS, CD4 85 and VL over 280,000. He kept having a fever and the Dr said the meds would take care of it. When his fever was a little over 103 I took him to the ER. After a lot of tests they found out he had meningitis. Was in the hospital for 3 days. After he started on his meds he started feeling great and still feels great. He was undetectable in 2 months after starting meds.

The advice I can give you is to learn all you can about HIV/AIDS. The lessons here is the best place to start. They really helped me. I know you are scared, I was and still after a year of dealing with this I still get overwhelmed at times. But when I do I always post here and the people here are amazing. They have saved my sanity on more than one occasion. Talk to your husband. Keep the communication open. Talk about your feelings, your concerns, listen to his. Talk to his Dr. don't be afraid to ask questions. Keep a notebook and write down your questions so you can remember them. I have a notebook that I take to the Dr with us everytime we go.

When you think things are getting so bad you don't think you can take it...stop...take some deep breaths. Things do get better...I promise they do. Your husband is so lucky that he has you. And you are not alone..you have all of us here at the forums. We are here for you and your husband. You hang in there. If you ever want to talk I am here for ya. You can PM me (you have to post 3 times before you can send a PM) or my email is teresa_ict@yahoo.com

Hugs
Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline WorriedWife

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  • Our Little Gift From God
Re: My Husband Just tested positive.
« Reply #4 on: May 15, 2007, 04:09:48 PM »
Teresa,

Thank you so much for your words of wisdom and the encourgement. That is exactly what I needed. Your story really made me feel good if your husband can go from 85 to being undetectable in just 2 months that gives me some great hope. I also like your idea of taking a notebook with you for the doctor that is a great idea. I think I will have to do that also. I have been doing searches on the internet trying to find as much information as I can but Im not sure I am understanding everything I am reading. I also think I am trying to learn to much at one time. I just want to be prepared for anything that might happen so that I know how to help my husband.

I was really debating with myself if i really wanted to open myself up to a forum like this. Now I am greatful that I did and I am greatful for people like you who are willing to help. Thank you so much for all your help.
"Everything Happens for a Reason"

Offline xyahka

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Re: My Husband Just tested positive.
« Reply #5 on: May 15, 2007, 09:37:57 PM »
Hi Wife and Migue, my name is Juan Carlos and i am two months diagnosed.

Well, i know how it feels to be newly diagnosed... as for me the first month was a disaster. I could not stop thinking about it... and feeling i would die immediatly, but to talk to other people helped me to understand i was wrong.

Wife why don't you bring your husband to the forums? he might find lot of info and stories here that will help him to realise he is not alone, plus we are very cool bunch of guys and girls and i am sure we can cheer him up :). Hiv is an illness we can deal with, many people live over 20 years after starting meds. Still with it, this is not all candy and chocolate... one has to evaluate our current lifestyle and prepare to make some changes.

Next thing I would suggest you three (Migue, Wife and Husband) is to find a counsellor to talk to, or perhaps a support group, to talk to someone always help. During first days... shock is big and it may hit us different ways (i used to cry a lot...) but it is ok, it happens to anyone, and none of us (not even you wife) needs to prove stronger than anyone... just let the things flow and you will see everything comes to the balance in some time. This is not good or bad... it is just a different path.

You can also start with the lessons of Aidsmeds, reading different articles on poz or reading the blogs where i personally found powerful stories that helped me after my diagnosis..

 To get used to this new situation takes time... but it do happens. I am two months in this and i am quite ok, none of my co workers ever suspect i am ill, my family and friends know and they support me, i am just more conscious about my habits, what i eat, and learnt to look after myself.... everybody got sad and scared at first.... but after two months... i am still here :) same as usual... making jokes, working hard, eating lot, and slowly they got to learn more about hiv, what to expect from it and hope came back to all of us....

My plans have not changed, in fact i have re gained interest in achieving my goals after diagnosis, i guess it is a bigger challenge, and since we will be around for long time yet... there is no reason for big changes in our plans.

Find people you can trust and get yourself informed about this. We are here for you, and you will see everything will be fine :)

Juan Carlos
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline milker

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Re: My Husband Just tested positive.
« Reply #6 on: May 15, 2007, 11:35:30 PM »
Worried, this is a beautiful story of love and forgiveness.

Migue, life is not over. Post your thoughts on here.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline WorriedWife

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  • Our Little Gift From God
Re: My Husband Just tested positive.
« Reply #7 on: May 16, 2007, 12:06:16 PM »
Thank you everyone. You all have already been a big help to me and it has only been one day since I joined. I am truely blessed to have people that understand and are willing to help.


WorriedWife
"Everything Happens for a Reason"

Offline Beatz4me

  • Member
  • Posts: 39
Re: My Husband Just tested positive.
« Reply #8 on: May 18, 2007, 02:23:14 PM »
Welcome Worried and Migue. Everyone is here to help in what ever way they can..

Worried, i wish I had people in my life as understanding and forgiving as you....

I have been poz for 1 year and month (that I know of) and I can assure you that things do get better.

 :)
Michael
« Last Edit: May 18, 2007, 02:46:28 PM by Beatz4me »

Offline Trixie

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  • Posts: 17
Re: My Husband Just tested positive.
« Reply #9 on: May 18, 2007, 09:48:37 PM »
It has been a while since I posted.... and I always hesitate before I go down this path. But I need to share a bit of my story, mostly because I am a lot farther down the path than the others who have posted previously.

I have been with my husband 22 years. In the early 80s he was told he had lymphoma (who knew much about AIDS then?). We met, fell in love, and enjoyed dating. After 6 years we decided to get married. At that time the state where we wanted to marry required an HIV test as part of its pre-marriage screening. My husband started to prepare me for the worst (little did I know that a Dr had suggested a test a year previously because he had an incredibly bad case of shingles on his face and torso). He had already done some research and suspected with worst case scenario. He was correct.

I won't go into the details, but the news definitely changed our lives and our relationship right away. He pulled away - I stood firm and assured him that I loved him "no matter what". We got married anyway, and never told anyone. BIG MISTAKE. I did not have a place like this to share and it nearly ruined our relationship - it was the elephant in the livingroom syndrome. If you do not have a release for your emotions - they will eventually overwhelm you.....

Having said all of that, here is some advice from someone who has been going through this a long time:

- Stay with him if you feel that is what you want/need to do. Honor your feelings.
- Know from the onset, this will be the most difficult thing to do. There will be days when you will resent him for putting himself at risk. There will be days were he will resent you for not having it yourself. Love does not conquer all and you will need your faith, all the strength you can gather and a very good support system to get through this.
- People will tell you they understand and they will be there to help. But when the going gets tough and things get ugly - you will find out who you can really count on. It might surprise you.
- He will make his own decisions about his treatment and you may not always agree. As he moves through the illness his feelings about meds and side effects may change. You will have to deal with his decisions. You can suggest and support - but ultimately, he will be in control there.
- Learn as much as you can. Your perspective will be different than his. You will hear things from doctors differently because you approach this differently. That difference can often be helpful. Because I can remove myself emotionally (somewhat), I usually catch things that doctor's share differently than he does.
- There will be days when you will question your decision to stay. Just know that and know you can come here for support. Also, see if you can find a local support group as well (they are hard to find for "affected" not "infected" in some cities).
- Take care of yourself. It is very easy to get totally caught up in what is happening to him. It is very important that you take care of yourself as well.

In closing, let me say I will keep you in my thoughts. I will be checking here often and you can always "private message" me.

Take care of yourself and him.
Sincerely - Trixie

Offline xyahka

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  • Posts: 778
  • Dance together!! aha!! aha!! I like it!!
Re: My Husband Just tested positive.
« Reply #10 on: May 19, 2007, 03:11:01 PM »
Trixie, great post... so glad you are here with us  :)

Juan Carlos
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline WorriedWife

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  • Posts: 82
  • Our Little Gift From God
Re: My Husband Just tested positive.
« Reply #11 on: May 23, 2007, 11:36:48 PM »
Trixie,

Thank you so much for the words of wisdom. I know that staying with my husband is what I want more then anything in the world. I know its not going to be easy. I know that having this group is going to be alot of help to me and all the people in here seem to be so great. Thanks so much for the advise. We goto the doctor tomorrow to get him stated on his meds so I guess now the real fun will begin.. I think the next month is going to be really tough and as the doctor said this is a bump in the road and eventually the bump will get smaller.  ;)
"Everything Happens for a Reason"

Offline xyahka

  • Member
  • Posts: 778
  • Dance together!! aha!! aha!! I like it!!
Re: My Husband Just tested positive.
« Reply #12 on: May 24, 2007, 12:13:52 AM »
Good luck wife!! i am sure things will get better

Juan Carlos
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline WorriedWife

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  • Posts: 82
  • Our Little Gift From God
Re: My Husband Just tested positive.
« Reply #13 on: May 29, 2007, 11:01:41 PM »
Hi everyone, I just wanted to let you know how the last doctors appointment went. It turns out that my hubby's CD4 is currently at 191 so they have him on some type of medication to keep him from getting phoenmia (sorry i cant spell tonight). His VL is somewhere around 43000. They did some more tests because they want him to be in a study for newly diagonised people so if he passes these tests he will start taking Retrovir, Norvir, and Reyataz. Has anyone here ever been on this combination? If so can you please just give me a heads up on what to expect? I am trying to be as prepared as I can before he starts his meds. He will probably start sometime next week. The doctor said he has no resistence and that the combination should work well for him. We are doing much better now I think alot of it has to do with the fact that we took a vacation and took the time to just get away from everything and have a good time. It made a world of difference. He has stopped creating problems in his head now I just hope it stays that way. I would like to thank you all very much for all your support you all have defintely been a blessing to me. I didnt relize how much reading peoples posts could be so beneficial. Thank you all so much for you continued support.

God Bless
"Everything Happens for a Reason"

Offline LT

  • Member
  • Posts: 56
Re: My Husband Just tested positive.
« Reply #14 on: May 30, 2007, 10:08:39 AM »
I'll leave it to others with more experience in love, marriage, and male/female dynamics to comment on the relationship issues.  I do, however, admire how you are handling this situation.

Having being diagnosed 21 1/2 years ago (two weeks before Christmas 1985), I do feel well qualified to comment on some of your other questions.

The net is full of all sorts of material, much of it written in medical mumbo-jumbo meant for the PhD types.  It can be a really tough slog to get through.  There are sites containing the same information designed for us regular humans to read.  The ones by the people who sponsor this forum, and Project Inform are good at that.

Be a little cautious with what you read on the net.  Anybody can post anything.  Look at the source.  Do they seem credible?  Are there multiple reputable authors that say the same thing?  Look at that date when that info was posted.  Is it pre multi-drug cocktails?  Is the situation presented relevant to first world countries, or the third world?  If you see something that you can't understand, confuses you, or seems at odds with other info you've read, post a question here and watch the analysis fly.

The stigma is another factor that will be on your husband's mind.  The media and evangelical leaders have done lots to paint HIV as an always fatal, Gay disease.  One need only look to Africa and Asia to dispel the Gay part.  New infection rates in some large western world cites, have heterosexual transmission rates consistently equalling or, beating new infections amongst homosexual men.

The "often fatal" part may still apply in many parts of the third world.  But since the mid-1990's, with early diagnosis, and newer treatments, the picture has completely changed in the Western World.  Remind your husband that no disease in history has killed 100% of those infected with it.

HIV has become much like diabetes.  Serious and possibly fatal if untreated.  Not that long ago a diabetic was faced with the probability of going blind, or eventually losing a limb.  That rarely happens now.

Similarly in HIV, with medical supervision, current treatments, and newer ones in the pipe, chances are extremely good your husband can live out pretty much a normal lifespan.  There might be some bumps along the way, but they'll be bumps not mountains.

Others have suggested your husband join these forums.  He might not be mentally ready for that - lots of fear about disclosure etc.  But he can read without joining.  Do encourage him to peruse our posts.  He might get a lot of hope from reading the stories in the "Long Term Survivors" threads.  And the area for the newly diagnosed will dispel the "all alone" feeling.  He'll also see how common his fears, and questions are amongst his peers.

Now lets discus your husband's reaction for the next little while.  Over the years I've talked to a lot of newly diagnosed people.  In my experience, people's thoughts seem to run something like this:

During the first year, he'll afraid all the time.  Every little medical thing is "The Beginning Of The End!"  Every cough is PCP pneumonia.  Every bruise he doesn't remember getting must be KS.  Every fever must be something serious. Every time you forget something, it must be dementia. Every case of food poisoning just has to be a horrible intestinal parasite.  With every cut, he will imagine he's spurting death out into the universe, and be afraid of letting you near, or letting you clean up afterwards.  The virus will be on his mind many many many times a day.  He will be oblivious to the fact that before HIV, he occasionally got sick, the way everyone else does.  His fears will ebb and flow like the tides, only much more erratically.

I would bet big bucks that the shortness of breath and your trip to the hospital was an anxiety/stress response to the low numbers he received on the phone.  That's in line with my above statements.

During the second year, people are a little less paranoid.  While the same situations are still stress provoking, the fear is much lessened.  But ever set of blood tests, and their accompanying visit to the ID doctor will bring up the "What if they found something horrible," kind of thoughts again.  They only think about the disease a couple of times a day.

Some time around year three, he will relax and settle into the virus being just as much a part of him as the colour of your eyes, or the shape of his nose.  He will only seriously think about HIV once or twice a week.  A setback will always bring the early fears right back, but they hang around for shorter and shorter periods of time.

Next, lets talk about the numbers.  It is easy to get hung up on the digits.  They are the only hard, tangible result we have to grasp onto, and see where out health is headed.  But in time you and he, will learn they are just numbers.  One of many different factors doctors use to gauge how you are doing, and what action he/she should take.

A CD4 below 200 is kind of a magic number in HIV treatment and care.  It is below that number that the opportunistic infections, like PCP pneumonia can set in.  But I'd like to point out that 191 is so close to 200, that anything from a sniffle to the stress of the test could have cause the number to drop from a little higher than the Magic Number to the result he received.

Because the test was lower than that 200, it is standard practice to start on antibiotics as a preventative (medical term prophylaxis) for pneumonia.  It is also quite common to wait a little while after starting the antibiotic before beginning ARV therapy.  If they started all at once, and there was a reaction, it would be more difficult to determine which drug was causing the bad response.

A viral load of 43,000 is quite a good number actually.  If you look through posting on this board, you'll see lots of first results of 100,000  350,000 or even 700,000.

I have been on all three of those meds at different times, but never in that particular combination.  It is an unusual grouping for first line therapy, but it IS a study - hence they're tying something different.

You've heard of Retrovir, you just don't know it.  It is the brand name for AZT.  It is part of the NNRTI class of drugs (Non-Nucleoside Reverse Transcriptase Inhibitor).

Norvir is the marketing term for Ritonavir.  It's part of the PI (Protease Inhibitor) class of drugs.

Reyataz is the trademark for Atazanavir, another PI drug.  I'm currently taking this in combination with two other meds.

The most common groupings for ARV therapy are two drugs from the NNRTI class, and one from the PI class.  In your case, it's two PI's and one NNRTI.  The study is probably trying to find out if that kind of grouping is better, just as good, or less effective than the more common combinations.  Drugs in a study are usually (probably always) provided for fee.  That may be one factor involved in your doctor suggesting it.

Understanding that I haven't taken that particular combination, I'll give you my experiences with each of the drugs.

I did AZT back when it was the only game in town.  There were no other drugs, and we didn't know that the virus could mutate to avoid it's interference with viral replication.  And I was probably on a much higher dose than your hubby will be.  The only reaction I recall was got dizzy and nauseous much more easily.  You know, that same feeling some get on a roller-coaster.  It would only take spinning around a few of times, or couple of tight turns round and round a cul-de-sac the feel that rumble in my tummy.  Never threw up - but felt like I was going to.

I've been very pleased with Atazanavir, and can't recall any reaction to it.  I've found it very easy to take.

Ritonavir and I haven't had as pleasant of a relationship.  I've had it both in a larger dose, as the only PI in a more common cocktail, and also had it in a combination pill Kalitra.  It can have some gastro/intestinal reactions, like some cramps, really stinky gas, and diarrhea.  All that usually subsides in time, but worth being prepared for.  Adding fibre to the diet, and yogurt can help.  Keep some anti-diarrhea meds handy, just in case.

These days Ritonavir is quite commonly used as a secondary PI, to boost the efficacy of the primary one.  It has an affinity for a liver enzyme that is used to metabolise some of the PI's (ie. take the drug out of the system).  Because Norvir will tie up all of that enzyme, less of the other PI is needed to keep high enough levels in the blood.  I'm sure that's at least partly how it is being used in this study.

It is that liver enzyme where I've had the problem with Ritonavir.  It is used by quite a lot of other drugs - for example anti-depressants.  That same system described above, can cause overly high doses of other drugs.  I've had doctors and pharmacists miss that interaction - make them check twice.

Since this is a new combination, it is hard to know exactly how he, and the virus will react.  You may see improvement in both numbers (CD4 up VL down) on the first test after starting the drugs, but might not see bigger jumps for a couple of more rounds.

This journey is a long one, but like every other, is taken one step at a time.  Keep us posted as to your itinerary, and let us know if you need help pushing an obstacle out of your way.  If you get stranded, and scared at one of your waypoints, give us a shout.  I know many here will help you get back under way.

Offline WorriedWife

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Re: My Husband Just tested positive.
« Reply #15 on: May 30, 2007, 11:20:10 PM »
LT,

Thank you so much for the responce and all of the great advise. I am trying to be strong and handle this as best I can. I know that what is done is done and there is no use in living in the past. As far as the anixety you were talking about with the cramps and the trip to the ER you hit the nail on the head. That is exactly what it was. So I guess what I have to get use to is going to the doctor or ER for them to tell him that he is fine and there is nothing major wrong. I know that this is going to be very hard for me to get use to but hopefully things like that wont happen very often. I have put all of my faith in the doctor and in God. I know that they know what they are doing and I have faith that everything will work out for the best.
"Everything Happens for a Reason"

Offline LT

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Re: My Husband Just tested positive.
« Reply #16 on: May 31, 2007, 02:23:49 AM »
Hopefully that's the only "panic attack" trip to the hospital.  But there will probably be a few "I should get this checked out right away" doctor visit over the next couple of years.

With the study, the ID doctor will probably want to see your hubby monthly for the first two or three.  Hopefully the questions, and discussions you and your husband have with the doctor on those occasions will allay some of his fears.

It sounds like you both see the doctor at the same time.  May I suggest you offer them some time without your presence, just in case there are issues your man might not want to discuss in front of you.  If they take you up on the offer, your curiosity will almost overwhelming, but let it be private between them.  He'll tell you if he wants you to know.

As to your comment about putting all your faith in the doctors, personally I think that you should not be that passive.  Doctors are human, and make mistakes.  They see hundreds of patients, and may not remember everything about your case.  If he suggests something that seems contrary to your own gut feeling, instinct, or research, don't be afraid to challenge them.

There is a book on the Best Seller lists now called "How Doctors Think," by Dr. Jerome Groopman.  Here's a couple of quotes from interviews:

"Most doctors, within the first 18 seconds of seeing a patient, will interrupt him telling his story and also generate an idea in his mind [of] what's wrong. And too often, we make what's called an anchoring mistake — we fix on that snap judgment." 

"Most importantly, I think, the patient and the doctor can partner. These thinking errors are made in the moment. They're made when the doctor is listening to the patient or examining the patient — these snap judgments.  Or not listening to the patient. And so a patient or a family member or a friend who knows how doctors think well and how they don't think well can help get the doctor back on track by asking some appropriate questions."

You can read, or listen to the whole NPR interview at:
http://www.npr.org/templates/story/story.php?storyId=8946558

I've had a few examples where challenging the Doctor has been beneficial.  For example, when my numbers were not doing so well, the doctor started to suggest boosting the Atazanavir with Ritonavir.  I had to remind him that the reason we switched to this combo was because of the interaction between my antidepressants and the Ritonavir.

Again, all the best

Offline WorriedWife

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Re: My Husband Just tested positive.
« Reply #17 on: June 03, 2007, 12:52:19 AM »
OK I have a question. Why would someone that is successfully on medication that is working would they stop taking there medication and then start again after a period of time. I thought that if you stop taking your meds you could grow a resistence to them? I have just read where a few people that said they stopped taking there meds and I just dont understand why they would stop.
"Everything Happens for a Reason"

Offline LT

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Re: My Husband Just tested positive.
« Reply #18 on: June 05, 2007, 05:15:49 AM »
To be blunt, the meds aren't easy.  In earlier days they were two, three, and sometimes four doses a day.  At four, that meant getting up in the middle of the night.

Ritonavir (Norvir), and others used to be far less stable and therefore required refrigeration.  If you were going to be out, when your next scheduled dose was due, you had to figure out some portable way to keep them cold (but not too cold) and dry.  You also wanted it the be discrete so that everyone didn't know your status.

People MUST be rigorous about the schedule.  Being off by an hour to two might be ok, but at three or four, the levels of the drugs in the blood start to drop below optimum to suppress viral replication.

I'm sure you've been on antibiotics or some other drug before, and missed a dose.  And that's in a less than two week course of treatment.  Imagine having to remember to take the pills each and every time.  The burden of the schedule can sometimes wear people down.

As I have said before, they are in a sense long term chemo therapy.  Just like chemo, the ARV's are quite toxic.  At least in the earlier, higher dosage days sometimes people develop stronger side effects the longer they stay on the drug.  People may decide they can no longer tolerate those side effects.

With some meds, people have an allergic reaction about two weeks after they start it.  Sometimes when re-challenged with that same drug a few months later, their bodies don't react negatively that second time.

Peoples lives change.  Perhaps work, or living situations change enough that keeping to the schedule, and the associated meals to accompany some of the drugs, just might become impossible.  For example, someone ends up on the street - can they get a meal, let alone the high fat one the drug requires, twice a day at the specified hours?

Taking the drugs erratically is worse than taking none at all.  With each missed dose, good old Darwinian biology suggests that some, more resistant mutations of the virus may survive, and their children are more likely to be resistant as well.  Of course this leads to a drug regime failing to suppress the virus.  So it is the lack of taking them regularly, or continually starting and stopping the same meds that lead to resistance.

In places where drugs aren't covered by the medical system, a change in finances, work, or insurance coverage, may mean you can no longer afford to buy the needed medication.  First line drug combos run $500 to $800 a month.  Second and third line start at about $1,200 but could run into the thousands.

Perhaps travel might be in the offing.  Finding ARV's in your luggage can be enough to have you turned back at the border of some countries.

In any of those situations, and if your blood counts allow it, the doctor may suggest a "drug holiday."  Usually they wouldn't recommend that, unless the patient had been on ARV therapy for a few years.

There is a theory that when no longer challenged by the drugs, the virus migrates back to its "Wild" genotype.  That can allow doctors to re-use a drug you had been on for several years previously, but probably now in a different combination.

Usually during that "vacation" the doctors still want to monitor CD4 and VL levels.

Some relish in their new found freedom.  Procrastination, leads to more procrastination, continually putting off that next exam, and blood work.  Until some medical incident forces them to go back to the doctor and get the new test.  (Hmmm sounds about standard behavior for middle aged men in general.)

In short, the reasons for taking a break from the meds, can be as varied as the individual.
« Last Edit: June 05, 2007, 11:21:49 PM by LT »

Offline WorriedWife

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Re: My Husband Just tested positive.
« Reply #19 on: June 06, 2007, 12:34:20 AM »
LT,

Thank you so much for the information. I think I understand now.   ;)
"Everything Happens for a Reason"

Offline OMDM

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Re: My Husband Just tested positive.
« Reply #20 on: June 18, 2007, 06:15:43 PM »
I'm new to this forum.  I might be able to provide some helpful info.

I was diagnosed almost exactly 5 years ago at age 60.

My CD 4's have stayed between 350 - 600 and my VL between 15,000-75,000.  Both trend the wrong way but so far I'm not on meds although I may start Atripla in the next 6 months.

My wife quickly packed up and left and threatened to sue me (through her lawyer) for attempted aggravated assult in order to get a big financial settlement. Her plan worked as I didn't want to be exposed in the local newspaper.

I drifted for a year and then started Internet dating.  I always disclosed prior to the relationship progressing beyond a few casual dates.  I dated a girl for 9 months which included lots of protected sex. Eventually she told me that we had to split as she hated condoms and it wouldn't work long term.

I soon met a gal - both of us are 65.

I disclosed to her on our 3rd date.  Her response was "it doesn't matter -- we can use safe sex". She then said that her former husband died after 12 months of marriage from encephalitis in 30 days and she has spent 10 years thinking about life and the frailty of life.

To make a long story short - we married exactly 365 days after meeting.  We've had awesome protected sex every other day for the 18 months of married life.  She gets tested twice a year but there has never been any risk of infection as we always use a condom.

My point is that life can carry on with little change.  It is easy to have a very loving marriage with a pos man and a neg wife.

Stay positive -- keep telling your husband that HIV is easily treatable -- he will eventually die from something but it is highly unlikely to be from HIV/AIDS.

Offline WorriedWife

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Re: My Husband Just tested positive.
« Reply #21 on: June 19, 2007, 11:27:39 PM »
OMDM,

Thank you so much for your post and for your support. Im sorry your first wife treated you the way she did.
"Everything Happens for a Reason"

Offline thegent

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Re: My Husband Just tested positive.
« Reply #22 on: July 06, 2007, 07:39:56 AM »
Wow, that's quite a story!  I'm so sorry to hear about your situation, but I'm surprised at how you're handling it.  It's obvious that you are a good person and I pray for you to stay strong.

Offline WorriedWife

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Re: My Husband Just tested positive.
« Reply #23 on: July 11, 2007, 11:35:28 PM »
Thank you gent. Your kind words are appreciated.
"Everything Happens for a Reason"

 


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