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My husband tested positive and I have some questions

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lovingwife:
Hi everyone. I've been lurking here for a couple of weeks since we found out that my husband tested HIV poz a couple of weeks ago. He had his first visit with an infectious disease doctor and Friday we got a call that his T cell count was 18. They don't have the results of the viral load so in the meantime he is on Bactrim DS and Zithromax. My husband doesn't want to come to the forum because he is still having a hard time accepting this and has alot of guilt. We have four children (3 from my first marriage and he has a son from a relationship in 99.) I was tested by the infectious disease doctor, but they don't have my results back. I'm prepared for the worst, hoping that I'm negative though.

He believes that he has had this for approximately 10 years....and since I met him in 2001, he has always had chronic thrush, toenail fungal infection, and recently he was fighting pneumonia which after doing some researching on the net I realized that these were all signs and symptoms of HIV/AIDS and told his family doctor to test him.

My question is, I realize his Tcell count is extremely low. He can't get rid of his fever and has lost about 30 pounds. I'm very worried that this wasn't caught soon enough and the medications the doctor ends up putting him on may not work. I realize he officially has "AIDS", but what are his chances of fighting this and living a long and healthy life? He has become a father to my children and I don't know what we would do without him. He is 38 years old and if I see another chart stating that he could be gone by the time he's in his 40's I'm going to lose my mind. Thank you to anyone who responds. I guess I am hoping to find someone who also got diagnosed late like he has.....and is doing well with the meds.

J.R.E.:
Hello,

Everyone is going to react differently to the meds, and to the amount of time it takes for the meds to start doing their job. So far, it appears your husband is only on anti-biotics.

I had 16 t-cells back in October of 2003, with a viral load of 500,000. I also went through wasting, and lost about 30 pounds of weight during a ten month period. Went from 170 lbs to 140 lbs. I was also dealing with pneumonia at that time.

Just prior to starting on meds, I was on Prednisone ( for I believe about a 20 day period.)  I was also started on Bactrim and Zithromax. The bactrim was later changed to Dapsone. Some people can have an allergic reaction to the bactrim, in which case that can be changed to another anti-biotic. So , the doctor should be monitoring him, just in case he may be having an allergic reaction to the Bactrim. See below :

http://www.drugs.com/bactrim.html




He will have to continue on the bactrim, until his t-cell count goes up to the 200 range. I was able to stop the Zithromax first, and then the Bactrim ( Dapsone)  later. I was on the dapsone for quite a while, until my t-cells started going into the 200 range.

TheHIV medication also started just a few days after that, which for me, consisted of Viramune, Zerit, and epivir. The Zerit was later changed to Ziagen (abacavir).


He will have a tough road ahead of him. I remember in that period of time how extremely weak I was. I was also sleeping quite a bit. Trying to accomplish anything physical took a lot of effort, and I wore out very easily.


He will need to sit down with his doctor, and discuss the regimen, that he will be placed on. Some can have a difficult time after starting on meds, others, not so bad.


As soon as I started on the meds, Things started improving rapidly. I was sleeping the normal 8 hours a day, but it was still a struggle, and it took some time to build up the t-cells and get the viral load to <50.


As I said earlier, it's going to be a tough road ahead, everyone responds differently.

What I would suggest for you, is to read up on the lessons part of the site, educate yourself, so that you can help to answer his concerns. Just continue being there for him, this is what he needs right now.


It is understandable that he is having a difficult time accepting things right now. He's scared, and he going through a lot of emotions right now. And I can understand, that this is not easy for you either. You need to be there for each other.


Depending on what additional blood tests the doctor took, can possibly make a determination, as to what HIV meds, that he will be started on.

My advice, would be to accompany your husband to the doctors office on each visit (if possible) and to ask the doctor questions. Be right there with him in the room. Two heads are better then one, when the doctor starts explaining details and regimens. Don't be afraid to ask questions. Take notes if possible. Have questions already written down for the doctor, when you and your husband visit with him.

 Try to keep his food and liquid intake going. He need as much nutrition as he can get right now. A multi-vitamin once a day would be helpful too. I was taking "BOOST" for a while. There are other nutrition drinks available.


After I started on meds, the weight started coming back very fast, my energy levels were much better, and I was feeling 100% better, hopefully your husband will experience the same.

If you have any other question, don't hesitate to ask. If there are things you don't understand from the lesson portion of the site feel free to ask away.



Take care of yourself-------Ray

allopathicholistic:

--- Quote from: lovingwife on March 20, 2007, 12:16:44 AM ---
I guess I am hoping to find someone who also got diagnosed late like he has.....and is doing well with the meds.

--- End quote ---

Hi LW. How are you holding up? First, I pray you test HIV negative. Second, I can share my own low T cell experience and hopefully your family might find it helpful. I had a low T cell count (42) when I started antiretroviral medications in September of 2005. I copied my history below, in green, for you to see. Right here on these forums we have at least a dozen members who've started with low T cell counts but meds have helped tremendously. The meds available today are much better than the old drugs from the 1980's and early 1990's and some new drugs (still in testing) are supposed to be even better. Personally I have an optimistic view that the drugs will get better and better. I also had a 24-pound drop in weight right before I started meds. I have gained all that weight back

Lowest 42 cd4 (7%) VL=100,000 (Sept 2005, started HAART too)
Highest 419 cd4 (18%) VL=67 (March 2006)
Current 342 cd4 (20%) VL=<50 (March 2007)
Meds are: Lexiva, Epzicom, Norvir

Much love to you and your family. Ask us anything.

Alex

Andy Velez:
Dear LW,

I'm glad you have found your way to our site. Keeping fingers crossed that you will test negative.

As dark as things may seem right now, when the meds kick in I think you are likely to see quite a turnaround. At least that is what I have often seen in the past and in situations far more dire than what you have described.

It's essential that your husband's numbers be monitored regularly and that a good working partnership is established with his doctor to keep him healthy. Hopefully you and he are on the way to making that happen now. Right now quite understandably HIV looms huge in your lives. Gradually as things "settle down" and get under control, it will still be important but it is by no means all that your lives will be about. The lessons on this site will likely provide you with some useful information.   

As time passes your husband may even want to look into our site. But don't pressure him about that. You are of course welcome to ask any questions you may have as well as just in general to talk about anything that's on your mind.

As for all of the dire stuff you have been running across -- that's not helpful nor is it to be taken at face value. It's good that you know his status now and can set about dealing with it to regain his health.

We're here for you. And please keep us posted on your test result.

And again, welcome.

Cheers,   

Teresa:
Hi Lovingwife,

We found out in May last year that hubby tested positive. He had a CD4 of 85 and his VL was over 280,000. Your hubby sounds a lot like mine. He lost a lot of weight, had thrush, and had that fever. They put him on Bactrim first and he developed a rash so they switched him to Dapsone. Hes done good on the Dapsone and is still on it. He ran a fever for a good 2 months. I kept asking the Dr about it and she said the Dapsone should take care of it. When his fever was a little over 103 i took him to the ER. They admitted him and did a lot of tests and come to find out he had meningitis. So keep a close eye on that fever.

Hubby is doing great. He is taking Atripla and Dapsone. His CD4s are 252 and his VL is undetectable. He will be on the Dapsone until he has a CD4 count higher than 200 for 3 set of labs in a row. He just had his first so he will be on it for awhile yet. Hubby has gained all the weight he lost plus a few more.

If you haven't read the lessons here i encourage you to do so. They really helped me. Make sure he drinks plenty of water and hubby drank Ensure until he started putting his weight back on. I have a notebook that I take to all his DR appointments. I write down questions I want to ask and then take notes on what the Dr says. I also have a notebook that I keep copies of all his labs.

I know what you are going through. It takes time but it does get better...I promise.

Keeping my fingers crossed that your test is negative. I have tested negative 3 times and now I just have to get tested once a year. Please keep us posted on your results.

We are all here for you! You are not alone.

Hugs
Teresa

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