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Author Topic: Frustrated, I have answers but leads to MORE questions  (Read 5840 times)

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Offline peaches1647

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  • Posts: 19
Frustrated, I have answers but leads to MORE questions
« on: March 02, 2009, 10:35:59 PM »
You will all probably get tired of me posting and I apologize if you do. This site has given me so many answers to my questions, but now I have more questions. I am frustrated because I really am trying to fully understand all that my brother is going through. Here are my questions, and please any answer will help a great deal.

My brothers viral load has sky rocketed its well over 500,000 now and his cd4 was 18(new results this friday) he cannot take the HIV meds at the moment because of the TB meds still apparently they conflict majorly. He is currently in the hospital for now more issues, lumps on his jugular vein and surrounding the neck. Serious issues with his stomach...barely able to talk or swallow...he has severe lipo(sorry cant spell it) and he is now almost 100 pounds.

1. Can his viral load come down from this? and same with his cd4 will it go up?
2. how imperative is it that he be back on his HIV meds? he was taking the Atripula
3. Will he just keep getting sicker without the HIV meds?
4. What else can I do to help him?

That will do for now, and thank you all again for your support. I didnt know how much I needed it till I joined.

Tina

Offline Assurbanipal

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Re: Frustrated, I have answers but leads to MORE questions
« Reply #1 on: March 03, 2009, 07:09:01 AM »
Hello Tina

I'm sorry to hear that your brother is having such a difficult time.  It must be very hard on you too, to be so far away and wanting to make a difference.

Your brother's CD4 count and viral load indicate that he is very ill.  But many people in this forum have come back from similar situations.  When I was in the hospital I had a CD4 count of 40, viral load of over 1 million and also could barely talk or swallow.  Others here had even worse numbers, including CD4 counts under 10.

I'll do my best at answering your questions, but hope that other more knowledgeable people will be along as well.

1.  If he gets back on effective HIV medicines his viral load can come down and then his immune system will get a chance to heal.  How much the CD4 count goes up and how rapidly differs from person to person -- you can see my progress in my signature below.
2.  For the long term he needs to be on effective HIV medications.  Since he stopped Atripla it may not work effectively for him in the future, but there are other medications he could try if he has become resistant to it.   In the short term, sometimes doctors prefer to fix the immediate problems before starting the HIV medications, to avoid complications of new side effects.  There is some debate in the medical community as to whether this is the right strategy or not.  The best thing you can do is probably to make sure that his team of doctors includes someone with a lot of experience in treating AIDS patients who keeps up with the latest trends.
3.  Yes.  Until his CD4 count recovers he is at risk of getting many illnesses that people with healthier systems can just fight off. 
4.  We can tell you are showing your love for him and I'm sure he feels that.  The most important thing you can do in practice is probably to make sure that he has a doctor on the team with experience in treating AIDS patients. 

I wish I could help you more.

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline peaches1647

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  • Posts: 19
Re: Frustrated, I have answers but leads to MORE questions
« Reply #2 on: March 03, 2009, 11:53:44 AM »
Thank you so much for all of your imput A. I recently requested for his Dr to contact me so I could discuss my concerns and so far I still get no where. I am on all of his medical records for them to contact me for any reason. My brother has made sure I have access to anything I need , 1 because I am also helping him with his disability and 2 because I try to explain everything to him and finally # for my own peace of mind.

This is a new Doctor for him, he has only had him since Nov. He does not listen to my brothers concerns or for that matter my own concerns. He was taken off the Atripula because of the severity of the TB and the conflict with those medications.

The health dept has been dealing with his TB issues which is almost fully under control and they said he will be able to resume his HIV meds as soon as they switch around a few of his TB meds.

So if I understand you right, your saying that once hes able to resume any HIV medication the cd4 will go higher and the viral load will go lower which is what he needs to happen for him. How high does his cd4 need to go? My understanding is once it drops below 200 he was open to all the OI's and in all honesty the last few years I cant even remember his cd4 ever being higher then 150 and that was on the Atripula and a few other medications. I even went back through my journal and cannot find a date that it was higher. This scares me! Maybe in need a different medications?

I am also currently looking into getting him a new Dr, one who will hopefully fully listen to all the concerns and not just the ones he wants to deal with.

I have a friend who lives in jacksonville Fla which is about 2 hours from my brother and sometimes shes made numerous trips to Orlando for me, either to take something to him or to take papers to the Dr's office or whatever I need from her.

I know I asked more questions again, but the answers I get always lead to more questions....I am sorry anyway thank you again.

Tina

Offline Assurbanipal

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Re: Frustrated, I have answers but leads to MORE questions
« Reply #3 on: March 03, 2009, 03:55:40 PM »
So if I understand you right, your saying that once hes able to resume any HIV medication the cd4 will go higher and the viral load will go lower which is what he needs to happen for him. How high does his cd4 need to go? My understanding is once it drops below 200 he was open to all the OI's and in all honesty the last few years I cant even remember his cd4 ever being higher then 150 and that was on the Atripula and a few other medications. I even went back through my journal and cannot find a date that it was higher. This scares me! Maybe in need a different medications?

I am also currently looking into getting him a new Dr, one who will hopefully fully listen to all the concerns and not just the ones he wants to deal with.

Tina

I don't think you can have too many questions, especially when they are motivated by your love for your brother.  Keep asking and we'll answer as many as we can.

First, if you can talk to his doctor, I would ask if he has had a resistance test.  That will allow you to know whether ATRIPLA will still be effective for him or if he needs to change to another regimen.  Since he has started and stopped ATRIPLA it may not be as effective for him as other medications.

Once he is on effective medications, his viral load should start dropping.  The goal is for it to be undetectable.  With a high viral load this will probably take a while (probably over 6 months). 

Once it starts dropping his immune system will be able to start healing.  But that can be very slow.  Sometimes, people heal quickly, sometimes very slowly. 

You mention he has not had above 150 CD4 cells on ATRIPLA.  Was his viral load undetectable?  If so, he may be one of the people whose CD4 counts are very slow to rise.  If not, that might explain why his CD4 count stayed low.

As far as how high his CD4 count needs to go, the target is above 500, but not everyone gets back there, and for some people it may take years.  Any improvement makes his immune system stronger.  Some opportunistic infections strike at CD4 counts under 50, others under 200.  Often people will be put on prophylactic doses of drugs to prevent OIs based on their CD4 counts. 

One of the most important things you can do for your brother's health is to ensure he has a good experienced infectious disease doctor.  To get a referral to a good doctor, you might talk to caseworkers at local ASO's, look for members of the American Academy of HIV Medicine, post a question on here.

Wishing the best for you and your brother
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline peaches1647

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  • Posts: 19
Re: Frustrated, I have answers but leads to MORE questions
« Reply #4 on: March 03, 2009, 06:09:53 PM »
Lets see, his viral load has not in the last few yrs been undected.... I have a little over 3 years worth of journals and I went back thru them to see and from what I can see his viral load has always been detected in this time. Sometimes ranging from 1700- over a million. This last year hes been at his worst and i cant remember a time in the last yr he hasnt been sick with something or other. The last few months though hes been at his sickest.  He also never seems to fully recover from any of it. His Dr's have said because he has no spleen its also alot harder for his body to fight. But when he was on the Atripula he wasnt so sick.... I mean he was but never like this. I pray everyday that he can go back on some sort of HIV regimen and SOON, but I also know they are trying to take care of the TB also plus the other things he has going on now. Oh I did find out today that he has MAC, so I looked that up. His biopsies come back tomorrow so I will know tomorrow what the lumps are or aren't. I am in all honesty exhausted. But I cant stop learning and asking questions because he wants to know also, so I keep moving forward. My 1 hope is that I can find him a new ID Dr as soon as possible. The health dept is getting me a list of Dr's and will fax it to me tomorrow. My other hope is that he comes out of all this and feels somewhat better. I know he wont be the same and thats ok, just as long as he isnt in pain. Thanks again A

PS. I am also in contact with his social worker(without her I wouldnt have been able to get his medicaid re-established) also and a couple of very nice ladies who help him with shopping and such. Even though I am not physically there I am very involved with his care and all the people who help him. I am trying and hopefully its enough.
« Last Edit: March 03, 2009, 06:13:10 PM by peaches1647 »

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Frustrated, I have answers but leads to MORE questions
« Reply #5 on: March 03, 2009, 06:40:04 PM »
If his viral load has been that high for three years then the drugs are not working.  That could be because he has not taken them consistently or it could be because he is resistant to them.  Or there might be other reasons such as poor absorption ...

In order to help your brother and to help you as his "translator" you might find this section of the lessons helpful
http://www.aidsmeds.com/cn/printView.php?page=/articles/WhenToSwitch_7516.shtml&domain=www.aidsmeds.com
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline peaches1647

  • Member
  • Posts: 19
Re: Frustrated, I have answers but leads to MORE questions
« Reply #6 on: March 03, 2009, 07:27:06 PM »
Ok, back to my journals I went. Three times he has been resistant to some of the HIV meds he was taken, and then they switched him to the Atripula. I am calling to speak with his Dr at the hospital tomorrow and ask if they can test him again for resistance. I went to one of the links below about the resistance and yes I would think that between 4-10 yrs he NEVER took his meds the way he was supposed to and barely ever saw a Dr. Now in the last 3 years he has taken them almost always because his partner makes sure of it, but i am going to call and ask just for my own knowledge. This last yr he had ran out two days in a row and was very upset but that was due to a lapse in his medicaid, needless to say I fixed that as fast as I could. Thank goodness for internet and credit cards, i was able to call his pharmacy and pay for it as soon as he told me he was out. I just want to say thank you, right now I have a huge list of questions I will be asking his Dr's tomorrow.

Offline peaches1647

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  • Posts: 19
Re: Frustrated, I have answers but leads to MORE questions
« Reply #7 on: March 04, 2009, 10:03:11 PM »
So heres a little update, I found out that my brother has bee resistant to alot of the meds, they are going to try him back on the Atripula and something else(for the life of me right now I cant think of it). But still cant do that just yet until they change his TB meds. I have found him a new ID Dr, but he is going to go visit with him at the hospital and see if there is anything different they can do at the moment. I guess its a huge matter of wait and see..Thanks agin for all your help!!!

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Frustrated, I have answers but leads to MORE questions
« Reply #8 on: March 05, 2009, 07:20:40 AM »
Tina

It sounds like you are really making a big difference for your brother's care.  Please let us know how his visit with the new ID doc went.

Best wishes
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline peaches1647

  • Member
  • Posts: 19
Re: Frustrated, I have answers but leads to MORE questions
« Reply #9 on: March 13, 2009, 05:18:56 PM »
Latest update, my brother seems to be giving up and it scares me alot. Depression is severe, he has gotten alot more OI's . I can hear it in his voice, now he is snapping at me all the time we might have 1 normal conversation throughout the day now and him snapping at me 50 times a day. But I keep going and keep trying to get him what he needs. Thats all for now....thanks everyone

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Frustrated, I have answers but leads to MORE questions
« Reply #10 on: March 13, 2009, 08:02:14 PM »
Thanks for the update.  Hope you are finding a way to take care of YOU too.

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Danny47

  • Member
  • Posts: 19
Re: Frustrated, I have answers but leads to MORE questions
« Reply #11 on: March 14, 2009, 12:18:49 AM »
Dear Tina:

I identify with you a great deal, for I have a very close relationship with my sister as well.  I've heard of a lot of stories about people coming out of very low cd4 count and OI's...The most important fact about any disease is your faith and also your will to fight it.  On your end, you are doing what your heart tells you to do.  Keep on being strong, do take care of yourself, visualize him well, think of him strong and healthy and continue pursuing every option of medical treatment that might be available to him. On my end you guys are on my prayers. 

I just found out I am positive, and the first call I made was to my sister who lives in Georgia, I reside in Puerto Rico.  For just being diagnosed my VL is very high and my CD4's are 156...due to the fact that I tested negative last year and was on Prednisone (80 mg day) to treat my ongoing UC (ulcerative colitis)  The prednisone shuts off your immune system and I was already positive but didn't know it, my UC treatment worked but it drained my immune system.  They placed me on Prophylaxis until they could get the results to see what kind of treatment would be beneficial...Atripla was chosen as my treatment.  During the weeks waiting for my labs, I had to console my sister on a daily basis....and your story of the love you guys have for each other reminded me so much of my relationship with her.

Hope you always feel the love he has for you, even if he is not having the best of times when he speaks to you.   I also have a blessing of having a support mechanism as beautiful as your brother's and I certainly feel blessed...as I know he does too.

My best to you.....
Negative on Feb. 3, 2008, Positive Elyssa Feb. 3, 2009
Feb. 11, 09 cd4 120, VL 267,000
Feb. 17, 09 Prophylaxis SMZ and Azytromicin
March 2, 09 Atripla and prophylaxis
May 09, VL UD, CD4 515
July 09, Lymphoma. Started Chemo every week, 13 weeks
September 09, VL UD, CD4 310
December 09, VL UD, CD4 414
January 10, UC flare, Lymphoma, Colon Cancer
Chemotherapy treatment & Radiation
July 2010, VL UD, CD4 234
August 2010, Cancer Free
Nov 2010, VL UD, CD4 204, Brain CT, Liver, Lungs, Kidney, Colon ans Lymph nodes Cancer Free!

Offline megasept

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  • Posts: 478
  • Steven here...
Re: Frustrated, I have answers but leads to MORE questions
« Reply #12 on: March 16, 2009, 01:44:52 PM »
Thanks for the update.  Hope you are finding a way to take care of YOU too.

A

Tina:

Absolutely! Danny and A's responses show we are truly touched by your posts. A has "been there" medically, and Danny totally appreciates your similar relationship with your Siblings. Your questions are good, and info and treatment options always lead to more questions (doesn't mean decisions can't be made, just that's how medicine works).

Here's something relevant concerning resumption of ARV: I have (notice present tense!) a friend with 25 years poz. He had 4 CD-4 for many years! They tripled to 12 CD4 after starting Insentress. Insentress seems to be great for "salvage" patients like my friend. I should also say that he believed no drug could bring down his VL, ever. I believe he's presently undetectable.  He started this therapy as a guinea pig in 2007; I started my Insentress 1/08 (+ Truvada). We are 2 very different patients (my CD-4 increased from 280 to 480), but both of us have done extremely well with Insentress as part of our arv. Discuss Insentress with your next specialist.

Keep working with that social worker, make the ASO contacts, and find a MD, who values communication and patient/advocate participation in medical decisions. A good MD would love to have you as the support person for his patient. You must be exhausted; find some support for you too!

Good Health to your Brother! Bless you!

 8) -megasept







« Last Edit: March 16, 2009, 01:51:06 PM by megasept »

Offline peaches1647

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  • Posts: 19
Re: Frustrated, I have answers but leads to MORE questions
« Reply #13 on: March 18, 2009, 09:20:42 PM »
First of all i would like to say thank you to Assurbanipal, Danny and megasept. I have not been on in a few days and I think you all saw my last post and yes I was exhausted and just mentally spent with everything that is going on and was not paying attention to my own health. My blood pressure was through the roof and my ekg's were all over the place, but I am much better now. This is what i did, my brother now has a new ID DR, who is absolutely fabulous. His social worker finally started to help me find him a new DR. I also got my brother a laptop off ebay at a very reasonable price , I set it up with all he would need in order to talk to me different ways. This seems to have brought him out of his depression somewhat and now we talk other ways other then phone.  :)

Right now he is more willing to get help still and take the new help offered to him. I cant thank you all enough right now your support has meant so much to me.  This site has become a huge part of me, and not just for me but also for my mom. I send her info from the lessons off of here so she can understand better. As I have said before my brother means the world to me , I firmly believe in having a close family which is how I have raised my children also.

Danny I so know how you feel when it comes to your sister. The one thing I am 100% sure of is the faith I have in him and the hope I have for him. Even though we are states apart I feel as though he is right here with me. I am determined to help him as much as I possibly can and will do whatever is in my power.

Stay strong and stay well.

Tina

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Frustrated, I have answers but leads to MORE questions
« Reply #14 on: March 18, 2009, 09:46:26 PM »
Tina

I was thinking about you this afternoon on my walk.   Glad to hear things are going better for you and your brother.

Best
Assurbanipa;
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Danny47

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  • Posts: 19
Re: Frustrated, I have answers but leads to MORE questions
« Reply #15 on: March 25, 2009, 12:02:16 PM »
My Dear Tina:

Although I am not much of a drama queen (which doesn't really make me a good gay) I must tell you that since being diagnosed (feb 11, 2009) I have not shed much tears...to be exact, only twice before this one, your last paragraph made me cry for I know that it must be just the words that my sister would say about me, and if I could take every little pain away from her, I would, even if it is related to my own health.  My Mom who only knows of my UC (Ulcerative Colitis) condition calls me the "bluffer" for I have been in intense flares and every time I talk to them I keep on saying how great I am doing.

Last year, they played a surprised visit from Georgia and went with me to my Gastroenterologist Doctor (very, very Latin...remember I am 47 years old!) At the time, I was so sick with the UC that the Dr. was beginning to consider a Colostomy.  I did appreciate their trip, because I think that it was when it dawned on me that I had to live with a chronic condition. I also felt the great amount of love that they have for me.  I admire you for sharing that with your Mom..at least we understand that HIV is a chronic condition, that requires a great deal of discipline...something I did not have at the beginning of my UC.  If it wasn't for that little "crisis" I don't think I would be ready to deal and cope with the discipline that HIV requires...so in a sense my UC, which got me to get HIV, is a blessing, for it also helps me in being disciplined about my HIV treatment.

I use my story to get to your brother again...I think that difficult times can help us grow, if we understand their meaning, their purpose.   I have a feeling that your brother have had a complicated case, because maybe he hasn't been disciplined enough with his condition, and perhaps (much like me with my UC) hasn't understood the treatment or maybe even the virus and how it seems to keep under control. 

You see...this little fellow we have inside is like a smart ass with spikes..every time you fail to take your medication, it takes the chance and starts running again, it is like opening the gate to a playful little pup in a cage, it goes wild, runs wild, and you NEVER EVER, can use the same tactics (meds) to put him back in the cage...for he learns your ways and all your tricks.  So if our brother stopped a med for some time...when he gets back on THAT med, the SOB will laugh at it, and go running the other way.  This is why this virus is complicated.  A same person can have 1000 variances of the virus (mutants) if they don't stick to a "working treatment"

The good news is, that once the Doctor identifies the geno (how he is) and the pheno (how he behaves) of the HIV he has today...which  is very unique and distinct in each one of us, he must stick (with a great deal of discipline) to that treatment for it to work and IT WILL work.  He will and can get your brother out of this crisis, but your brother plays an intricate part of that treatment, first by knowing that he can get out of the crisis, and then by staying in the regime that will get him out of the crisis.  I know of a very close case, where the person had a CD4 of 4 and VL in the millions, had lost over 50 pounds and was in IC for over two weeks with all kinds of OI's and he is tall and healthy today, all because he wanted to give up and then decided to fight.

I feel your brother has a great deal of beautiful things around him to be thankful for, I hope that the new computer works as a physical symbol of that.  He must want to get better and be healthy enough to understand it, also it is imperative that the right information gets to him in terms on how crucial it is to be very discipline with the selected treatment.  Failure to do so will have the freaks mutate and waste beautiful treatment time that he needs. 

Have the Doctor explain the virus and treatment to him in layman's terms.  Or if he is not "clinical enough" (the Doctor) find information that would beneficial to his full understanding of what we have.  After all, I considered the virus to be weak and stupid...I cage mine every night at 10PM with my three medications in one, one is a leash...the second an outside cage and the third an inside cage...I stop my last meal before 8PM so that the leash, and cages have the same strength to keep him there....

My best to you and Brother....

Danny

 
Negative on Feb. 3, 2008, Positive Elyssa Feb. 3, 2009
Feb. 11, 09 cd4 120, VL 267,000
Feb. 17, 09 Prophylaxis SMZ and Azytromicin
March 2, 09 Atripla and prophylaxis
May 09, VL UD, CD4 515
July 09, Lymphoma. Started Chemo every week, 13 weeks
September 09, VL UD, CD4 310
December 09, VL UD, CD4 414
January 10, UC flare, Lymphoma, Colon Cancer
Chemotherapy treatment & Radiation
July 2010, VL UD, CD4 234
August 2010, Cancer Free
Nov 2010, VL UD, CD4 204, Brain CT, Liver, Lungs, Kidney, Colon ans Lymph nodes Cancer Free!

Offline Blitz79

  • New Member
  • Posts: 2
Re: Frustrated, I have answers but leads to MORE questions
« Reply #16 on: March 25, 2009, 07:04:54 PM »
Well, apparently I should have looked around these forums a little more before I posted in the 'Living with HIV' forum!!  Thank you, Tina, for posting so much because I did get some good info from your questions.  I'm glad to know that people can recover from such low numbers...but I don't think my brother-in-law has any desire to take anti-virals again.  He quit taking them probably 2+ years ago...we're not sure exactly when.  His CD4 (same as T-cell, right?) count last week was 16 and he is so out of it...our biggest frustration is that even with all the tests they have done, we still really have no answers as to what is really happening with him.  We don't think he will ever be able to go home and live alone...but we really don't know!!  I feel the worst for my mother-in-law...her husband passed away unexpectedly in 2007 and now her son is very sick.  I can't imagine watching your child die.

We are all growing very angry/frustrated with the lack of answers.  They've done two spinal taps, plan to test bone marrow and discussed a brain biopsy to test a 'white spot' found in an MRI but decided against it.  We just can't understand why they are doing all of these things but still aren't able to provide anymore information. 

I am glad you have been able to do so much for your brother...I wish we could do more for my BIL.  HUGE hugs for everything you have done for him!

Offline Danny47

  • Member
  • Posts: 19
Re: Frustrated, I have answers but leads to MORE questions
« Reply #17 on: March 25, 2009, 10:52:04 PM »
Dear Blitz:

I am so sorry about your Brother in law.  Maybe he is experiencing some type of Opportunistic Infection, if it is toxoplasmosis (a type of fungus that develops while our CD4 are very low)  you might notice some mood changes in him, some lack of coordination and even some signs of incoherent thinking.  Then you might be able to make some decisions for him, and those can be related to the medication he is taking.  Usually a close relative or parent can make those calls for him if he is a little out of it.  There are some antibiotics that are given in order to try and rid the body of the fungus. I hope that they identify quickly if that's the case,but I can almost guarantee that they are already giving him the antibiotics related to that, the dosage is what would vary. 

Most of us have been exposed to that fungus during our lives, there are some test that will show if we have the antibodies for it (meaning we had been exposed), but once our defenses (T cells) go down, so does the antibodies we have in us, and then is when this fungus can manifest and develop  for we no longer have the antibodies to fight it.  Why did he stopped taking his meds?  I have a friend that started acting like that, and it was the fungus that had reached his brain

I really hope that he goes to a full recovery...and you are so right,   no parent should have to go through that pain.  I also wish that the Doctors can give you guys at least a clue as to what might be happening, but most importantly  that they can give him the meds to get him out of the crisis....

My thoughts are with you...

Danny
Negative on Feb. 3, 2008, Positive Elyssa Feb. 3, 2009
Feb. 11, 09 cd4 120, VL 267,000
Feb. 17, 09 Prophylaxis SMZ and Azytromicin
March 2, 09 Atripla and prophylaxis
May 09, VL UD, CD4 515
July 09, Lymphoma. Started Chemo every week, 13 weeks
September 09, VL UD, CD4 310
December 09, VL UD, CD4 414
January 10, UC flare, Lymphoma, Colon Cancer
Chemotherapy treatment & Radiation
July 2010, VL UD, CD4 234
August 2010, Cancer Free
Nov 2010, VL UD, CD4 204, Brain CT, Liver, Lungs, Kidney, Colon ans Lymph nodes Cancer Free!

 


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