A rough time here.

[DallasJ]

I am a gay man in my 40s and have been with my husband for 4 years.  A few months ago got sick. First it was swollen painful gums, then diarrhea, then neuropathy, then disseminated shingles (all over). I lost 65 lbs.  My doctor was running all kinds of tests and I came back positive for HIV. My husband went to get tested and he is negative (thank God). He is going to go again in a couple of months to be sure. 

My CD4 count is 15, and I have CMV in my intestines and colon. I started taking Atripla, Valcyte, Valtrex, and several antibiotics.  I obviously have been positive for 4-5 years, but have only been with my husband since then and we've only had unsafe sex a couple of times.

This has been the most pain I've ever felt. The shingles are healing but the neuropathy is still very painful all the time.  I've been going to work through all of this because I'm terrified if I miss work I'll lose my job and thus my insurance. Plus I'm the main provider in the family. Beginning Atripla was terrifying because it's so expensive and I know I can't ever stop taking it. I read online that since my CD4 is so low I probably will never get it back up above 300, and that may take years. Not sure if that's true, but it's scary.  Now my left eye has started hurting and I'm worried it has to do with the CMV.  I'm going to see an eye doctor as soon as I can.

My husband and I have stopped having sex.  I don't blame him, and asked if he wanted to break up and get a divorce.  He said he needed to think about it, but he's still here. I'm scared he will eventually leave, but I also love him and want him to be happy. I even thought about suggesting an open relationship, but we're not really like that.  I'm not sure if we could make that work.

It's hard to have any hope for my relationship or my health.  I cry a lot.  I have a lot of fear, and the only support group I've found meets during my work hours so I haven't gone. I'm afraid I'll soon be blind, crippled, hospitalized, or worse.

Please give me advice or comments.  Has anyone been able to keep their relationship going, and how?  Does the info about CD4 count staying low sound correct or is that not true? Does anyone know how to lessen the pain from the neuropathy?  Are my chances of surviving this as low as I think?

Thank you for reading.

[Miss Philicia]

1) there is no reason that you can't keep a serodiscordant relationship going. You're both in your 40's, not teenagers -- educate yourself on how to go about this. Are you implying that the two of you refuse to have sex with the use of condoms? If so, then explore having your partner go on PrEP http://www.truvadapreprems.com

2) with a diagnosis such as yours, low initial cd4 count, it very well may take years to reach 300. However, there is no reason to think that is the highest you will every go. It's possible, but not a given.

3) as far as neuropathy, it's an extremely horrible thing (I have it myself) -- but there are various forms of neuropathy and while I do not wish to give you false hope, there are a few forms of neuropathy that present themselves with low cd4 counts and then somewhat dissipate once your immune system improves. Of course, it's entirely possible that won't happen. What is your doctor doing to address this issue in terms of pain relief?

4) as far as your eyes/CMV by all means go to an eye doctor

5) the loss of 65 lbs is concerning unless you were overweight to begin with -- what is your height and current weight. How is your doctor addressing this issue?

6) Back to the partner issue -- if this is really more of a psychological issue for him then you should consider joint therapy or peer counseling. Do you live in an urban area that might have something geared towards gay couples in such situations? If I can go by your user name that you live in/near Dallas, TX you should contact the LGBT community center there and see of they have peer counseling and explain your situation. Or similarly an AIDS Service Organization for a therapist.

[DallasJ]

Hi Philicia, thank you for reading and responding.  My doctor recommended a neurologist but I haven't made the appointment yet. I have been worried about missing work plus wanted to see how much my insurance was covering (but I see it has been covering all the doctor visits so far).  I tried complex vitamins B, but not helping much.
I'm currently 6'2" and 173 lbs. My doctor has only said she thinks I will gain weight back after taking my meds for a while.
I think we should seek counseling, but I was waiting for him to determine how he wants to handle the situation. I know he is very scared too.  Not just for me, but for staying negative himself.

[mecch]

Wow I'm sorry, you sure are being put through the wringer.

Please stick around here and post a lot. It will help reverse the isolation.

Seems like you are doing a good job going after answers for your medical challenges.  We carry a lot of fear when we don't know whats going on.  Always keep on top of this from now on.

My advice is you will need to keep on top of the financial challenges, and the affective ones too.  So you're going to have to actively work at keeping your relation and making it satisfying for the both of you.  As Miss P said.

Financially as well, I hear there is pressure on you.  So thats going to factor into the relation, IMO.  First of all you'll need to figure out what the future requires for medical insurance - I am American and I held this deep deep fear of lack of access to medical care all through the 80s and 90s - its only natural because there were, and continue to be, so many hardship stories...  But remember the situation is always changing and some of our fears, set in our bones, are based on older realities.  At least, for example, there is ACA now, and a national system of getting medical care to to HIV+ people with lower incomes or no income... 

Maybe eventually there might be lifestyle adjustments if there are income adjustments coming, and/or your husband might have to contribute more to the joint income.  Whatever it is, you have to face these things together as a couple, IMO, or the couple isn't working...  Can't all be on your shoulders... IMO

[Ptrk3]

DallasJ:  my thoughts are with you.  You have a lot on your plate right now, so take a deep breath and sort out things one at a time.  Things do get better.

My CD4 was 9 at diagnoses (and PCP), about 9 months in it was at 131 or so.  I'm due next month for an appointment with my ID and related blood tests.  I'm also on Atripla and reached UD very fast.  The CD4 rates is slower but it will come in time.

I do have some neuropathy in both feet (no pain, just tingling), but I think that's the neuropathy has been lessening over the course of my treatment, so perhaps Miss Philicia is correct that some forms improve when CD4's rise.

I'm sorry to hear of your troubles, but things do get better and will sort themselves out in time.  For now, just keep your faith in the meds and follow all medical instructions.

[Almost2late]

Hi Dallas and welcome to the forums,

I'm so sorry about your diagnoses and the health challenges your facing.. but I'm glad you found your way here.. Like you, I was diagnosed with low cd4's and am married also but in a straight relationship where my wife is not infected.. I'm not going to lie, its been rough but getting better with time.. I've learned an enormous amount of information on these forums in such a small amount of time.. And most importantly have gotten great advise from some of the kindest people I have never met, mecch, miss p and ptrk3 are three of them but there's so many more.

While my OI's were a little different, PCP and KS.. I've found that the most challenging was dealing with my mind and trying to get a grip of the stress.. Try not to stress, I know its hard but stressing too much will not help.. Like you I am the primary bread winner and had to continue to work but I do take a day off once in a while to recover.

I have to admit that its been rough but the truth is that it does get better.. Try to keep a journal of all your experiences so you can share them with your doctor along with any questions you may have and be as candid as possible, this will help your doctor and you get you the best treatment tailored just for you.

There has been many here on the forums that had low cd4s and have improved.. I'm in my 50's and have seen improvement, so you being 40 should see improvement, it just takes time.. hope this helps.

Wishing you the best and try not to stress

[DallasJ]

Thank you all so much for the responses and advice.  It is much appreciated.

[Almost2late]

Dallas, your more than welcome.. Had to come back to send you a link that may help with your co-pay for Atripla.. for me, I wind up paying nothing and that helps..

http://www.bmscustomerconnect.com/bms3assist/copay/

 

[Miss Philicia]

Hi Philicia, thank you for reading and responding.  My doctor recommended a neurologist but I haven't made the appointment yet.

A standard first line treatment for HIV-associated neuropathy would be either gabapentin or Lyrica -- either can be easily prescribed by your HIV doctor. I would discuss trying this with him first, as obtaining a neurologist appointment can take months anyway. I'm surprised he's not at least offered you this already, frankly.

[pittman]

Sorry that you are going through such a rough time.  Many have been there before, so you should be optimistic that you will be able to come through it too.

As for your husband, it is perfectly reasonable of you to expect him to stick around. You are far from the first spouse to become sick after being married.  You don't owe him a "get out of jail free card."   You do owe each other some time to adjust and to deal.

I would advise you both to avoid any radical changes until you get back to a point of normalcy.  The stress should be less, you should feel better, and possibly even come out stronger as a couple.

[drewm]

Glad you are here. Sorry about the DX. There is good news. YES, you are going to survive. I was dxd in the hospital in 2010 with AIDS. (You can see my counts and response to the drugs below.)

My advice is to get some counseling to help work through the emotional and psych issues. They are every bit as important and possibly more important than the physical issues. It's tough to fight this virus when you are depressed and scared.

[DallasJ]

A standard first line treatment for HIV-associated neuropathy would be either gabapentin or Lyrica -- either can be easily prescribed by your HIV doctor. I would discuss trying this with him first, as obtaining a neurologist appointment can take months anyway. I'm surprised he's not at least offered you this already, frankly.

When I asked my dr. about it she said she didn't know much about it, and just offered a referral.  Other than this I really like her.  She is very concerned about me and has even called me a couple of times to just check in and see how I'm feeling. I'm seeing her again soon and may ask about the meds you mentioned.  Thank you again, Philicia.

Many have been there before, so you should be optimistic that you will be able to come through it too.

Thank you for that advice on my relationship, Pittman. And your first couple of sentences actually made me feel much better and gave me some hope.  This has been a VERY scary time for me and it's nice to hear that.

[Since1993]

Given all of your physical problems (OI's, neuropathy, labs), I'm surprised your primary care physician or a hospital social worker hasn't suggested the possibility of employer-sponsored Short-Term Disability (if available) and/or Social Security Disability.  While I understand you are the primary bread winner of your family, if you feel you can't work, or your job begins to hinder your ability to recover and/or your illnesses exacerbate, applying for disability as soon as possible should be kept open as an option.  Given your list of AIDS-related ailments, your best window of opportunity to receive approval for an initial claim would be now or very soon.   

http://www.ssa.gov/pubs/EN-05-10019.pdf

The referral for a Neurologist is good because you clearly need treatment for nerve pain and an EMG with Nerve Conduction Studies would determine the extent of your Neuropathy.  Most medications for Neuropathy are on some, if not most states ADAP formularies.  Your primary care physician should be able to minimally prescribe Neurontin.  If you have unrelieved pain, you should insist your primary care physician treat you in the interim.  You shouldn't have to suffer with pain.

While my Neuropathy numbness did not improve after I became virally undetectable and had only modest improvement with my CD4 count, the pain did subside incrementally.

I would suggest you keep a record of every physician appointment from the time you were hospitalized going forward in the event you need to apply for disability.  You will need that information.

[aidsshmaids]

I've kind of been in your situation.  I'm positive my husband is negative.  I was diagnosed about two years after we began living together, had been positive the entire time.  We got married after my diagnosis. 

Don't really have much advice other than you can get past it. HIV is the least thing we worry about.  It's just not an issue. 

[DallasJ]

Well I saw my I.D. doc again and have been feeling much better.  I tried complex B vitamins for the neuropathy pain and either that or the Atripla is working because it is much less severe now.  She drew blood and I should hear an update on my numbers in a week or so.  I think they'll be much better since all the meds seem to be working.

Me and my husband are still together and are working through this together.  He seems very attentive and sweet, but still no sex.  I feel like there's hope for both regaining my health from such a bad place and keeping our relationship going.  It may take some time but I think we both want it to work.

It's nice not being so scared all the time like I was a couple of weeks ago.  These forums really helped me a lot.  Hearing others stories and opinions and encouragement is much more beneficial than I expected, so thank you all so much!  I sincerely appreciate it.

Any newly diagnosed people out there reading this: stay strong and don't be discouraged!  When they say it gets better or easier or that it'll be okay, it's true!  Don't let the initial fear overtake your hope.

[Almost2late]

Great update.. Happy to hear this

[weasel]

    Nice to meet you DallasJ ,
                                               I hope you are feeling  less stressed .
     It really does get better , to the point of having days or weeks
     not dwelling on HIV . I still have some days that are  sad . But my
    Husband of over thirty years makes me feel better
     When I turned full blown AIDS my husband told me it was a bump in the
    road, we would get threw it together . 
    He is still Negative  , still gets tested every six months .
    I wish you well in your relationship , it will work if you want it to .

                                                           Weasel

   P.s.  I just turned 60 , half  my life with HIV & a Husband 

[drewm]

Well I saw my I.D. doc again and have been feeling much better.  I tried complex B vitamins for the neuropathy pain and either that or the Atripla is working because it is much less severe now.  She drew blood and I should hear an update on my numbers in a week or so.  I think they'll be much better since all the meds seem to be working.

Me and my husband are still together and are working through this together.  He seems very attentive and sweet, but still no sex.  I feel like there's hope for both regaining my health from such a bad place and keeping our relationship going.  It may take some time but I think we both want it to work.

It's nice not being so scared all the time like I was a couple of weeks ago.  These forums really helped me a lot.  Hearing others stories and opinions and encouragement is much more beneficial than I expected, so thank you all so much!  I sincerely appreciate it.

Any newly diagnosed people out there reading this: stay strong and don't be discouraged!  When they say it gets better or easier or that it'll be okay, it's true!  Don't let the initial fear overtake your hope.

Glad you checked in. Sounds like things are getting a bit better. You can expect this to continue. The initial diagnoses is truly overwhelming. If the disease doesn't get you, the paperwork, doctors appointments etc etc will LOL! Life will go on and so will you! Glad things are looking up!

[maxmarco]

Hi DallasJ,
Wish I could share positive energy, but I'm just starting my journey myself.
Have a question, your signature says your VL went from 210 to 1,100,00 in three weeks? No typo there right?
Thanks
Max

[Irish Eyes]

Have a question, your signature says your VL went from 210 to 1,100,00 in three weeks? No typo there right?

No typo. Just backwards. List is in date order newest/latest at the top.


8/27/14: CD4 = 46, VL = 210
7/16/14: CD4 = 15, VL = 1,100,000
7/11/14: started Atripla
7/7/14: tested positive.

[drewm]

VL from 1,100,000 to 210 in a month! WOW! That's a damn good response to Atripla!

[xinyuan]

To drop almost 4 log copies (VL ~1,000,000 to ~100).

That's impressive! Most only drop 2 log copies within the 1st 4-8 weeks.

You'll very likely go UD before 6 months, DallasJ.

P.S., Congrats, Irish Eyes, on going UD.

[Irish Eyes]

P.S., Congrats, Irish Eyes, on going UD.

Thanks and welcome back.

[xinyuan]

Thanks, Irish Eyes.

Became very symptomatic from continued bleeding after surgery. Too tired and in too much pain back then to do much outside of work.

Sorry, Jeff G. The surgery didn't go as well as hoped.

Expect the worst, and you won't be disappointed.

[Since2005]

Hey Dallas,

I did not want to make this a Zombie thread - but just finished reading your thread. Curious mind wants to know how are you doing? I could have privated you but then I am sure may be others would have wanted to know too.
Two reasons - first, I didn't see that you have posted anywhere for a month. I would suggest post a lot as it worked as therapeutic for me when I first started coming here. It is helpful especially when you are dealing with this as a first timer.

Another reason is that you are going through a lot. Relationship, newly dxed, pain, stress etc. You have got some good advice here. Someone suggested short-term disability - I would consider that. It is against the law to let someone go because of the disability. This will give you some time to regain some of the strength that you need. I truly hope that you are in a far better place than where you were a month ago.

Please keep us updated. Hope you figured out few things. I would also suggest seeking a therapy immediately if you haven't already.
Best wishes

Since

[POS07-11-2014]

Agree with Since2005.

I'm newly diagnosed and having a hard time. Would love to hear from you that it does get better......

I personally am struggling to feel that in my first few months.

[drewm]

My transition onto the meds was pure hell. I ran temperature on and off always wondering if "the other shoe was falling." Insomnia from hell. The grim reaper in my dreams...or was I awake? Shivering one minute. Peeling covers off the next. I was so weak, I could not walk 10 feet to the bathroom without "resting" at the end of the bed. I literally felt like I was going to die. The ONLY thing I had to hold onto was the drugs and the young doc from MDAnderson who told me "we can fix this, it's not the same virus as it was in the 80's."

Faith is believing when everything else says not to. I held on because what else was I going to do. Improvement came slowly but it did come. Sleep returned. Appetite returned. Fever stopped. Atripla began to do it's job and within 4 months I was UD and CD4's were above 300.

IT DOES GET BETTER. The path is not an easy one but today, as I type this, those memories are just that...memories. Most days I don't even think about this disease other than keeping up with labs and paperwork.

Hang in there.

[Ptrk3]

Drewm:  my story almost exactly like yours:  CD4 of 9, VL 111,000, PCP in hospital, with same advice about the disease not being the same as it was.  I'm much better now, but still have to work on emotional aspects of things (diagnosed in August 2013, so still a bit new).  But it does get better fast.  I was UD within about 6 weeks and my CD4 has increased slowly but decently in the last 13 months.

Hang in there and take care of yourself.  Trust your doctor.  Eat right.  Rest.  Take your meds.

[worldz13]

I have been in the same  relationship since the age of 20, and now I am 42 , he is older than me by 20 years, it was not about sex, we just felt comfortable around each other, and looked out for each other, sex did happen in the first few years, but I needed more excitement and yep I had affairs, he always is the faithful one, in bed at 10pm, whilst I were out till 4am enjoying life to the full, I remember going through the dreaded flu symptoms when I were in my late 20s, and a friend said I should get tested, it took this friend 5 years to get me to go and get tested, I were so scared to here the results, as I were ill, I were not getting better, I were getting weak, had thrush all the time in my mouth, golf ball glands on my neck, so I went and no surprise it were positive, and were shocked the specialist deferred my meds as she thought I did not need them at that time, my vl were high, but cg4 were 320 , after another year or so she advised me to start meds when my vl were 250 of which I started Atripla, being told I needed meds were worst than being told I were positive.
I remember the first night of meds well, I got in bed and did not know what to expect, I expected the worst, I took the pill and just layed there in a dark room, kept turning the light on to look at my skin, and after an hour, I had this protective aura all around my body, head to toe were like a shield on the outside were protecting me from the world, the feeling were out of this world.

I had to see my specialist next day, and I told her about this , she said oh you have had the ready break feeling, and I took atripla for 7 years, no problems, just crazy realistic dreams., but after 6 years the dreams were becoming a problem, and I changed to eviplerea. which I have been on for around 4 months, and its a fantastic med with no side effects for me, you do have to have it with food at a meal time, but there is no side effects what so ever.

just before I swapped to my new meds, I got a couple of pimples on my penis, of which the specialist removed and sent away for a biopsy, she were shocked that they come back as KS Cancer, but I have not had any more since and doing very well but because I got them, they did have to give me the Aids diagnosis as this is defined as an aids related condition. but its only a name and im still doing well , and its now getting to six months with no more ks lesions,

you still get good days and bad days like healthy people do, at the moment my glands under my arm are really sore, and in my groin, but I have had a cold, so that could contribute to them enlarging,

HIV is not the end of the world, its the start of a new chapter in your life, I value things more each day now, me and the other half are still together, and in some ways more stronger and closer, I did not tell him about my diagnosis for around 4 months after I found out, I give myself time to get my head around it with the help of a very special friend, who may have given it me, but if it was him, I forgive him as it took 2 people to get were I am today and not 1.
Me and my partner, never need to mention my condition, only if I have had to see the specialist and he will ask how I got on, he has been with me to some appointments, he tested neg by the way, were great friends, and will always be together no matter what the world throws are way, I have loads to be thankful for and I especially appreciate all the people in the 80s 90s and later who give there life away so young for trying trial meds, which I feel has contributed to our amazing meds of today, I can go for days without thinking I am positive, even the other day I went to see a film called pride at the cinema with my partner and 6 friends , and in the film it  mentioned people who had aids in the 80s, and one guy called it anal injected death sentence, I thought about it, and just laughed it of, as times have for our sake moved on so much from the 80s, and we need to be so grateful of this .

[DallasJ]

Have a question, your signature says your VL went from 210 to 1,100,00 in three weeks? No typo there right?

I guess my signature was going the wrong way. I changed it... 😉

[DallasJ]

Agree with Since2005.

I'm newly diagnosed and having a hard time. Would love to hear from you that it does get better......

I personally am struggling to feel that in my first few months.

It does get better.  I'm still worried for the future, but less scared and panicked than I was. I've been working a lot and trying to enjoy every day.  Me and my husband are still together. We've abstained from sex for over 3 months now, so he'll be going to get tested again soon.  It will be nice to know for sure that he's negative.

I go back for blood work again in a few weeks, so hopefully my numbers are still improving.

[DallasJ]

Hey Dallas,

I did not want to make this a Zombie thread - but just finished reading your thread. Curious mind wants to know how are you doing? I could have privated you but then I am sure may be others would have wanted to know too.
Two reasons - first, I didn't see that you have posted anywhere for a month. I would suggest post a lot as it worked as therapeutic for me when I first started coming here. It is helpful especially when you are dealing with this as a first timer.

Another reason is that you are going through a lot. Relationship, newly dxed, pain, stress etc. You have got some good advice here. Someone suggested short-term disability - I would consider that. It is against the law to let someone go because of the disability. This will give you some time to regain some of the strength that you need. I truly hope that you are in a far better place than where you were a month ago.

Please keep us updated. Hope you figured out few things. I would also suggest seeking a therapy immediately if you haven't already.
Best wishes

Since

Yes, I've been working a lot and trying to get back to normal, so haven't been online much.  I'll try to come back more often, as I really like this site.  I thought about going on short term disability, but I seem to be doing better, plus I enjoy the escape that focusing on my job brings me.  If I was home all day I would be thinking about it all the time. I am actually enjoying my work more now.  Enjoying everything more now.  I guess realizing how easily it could end does that.

Thanks everyone for posting on my thread!  I didn't expect there to be any more responses. 😊

[drewm]

Enjoying everything more now.  I guess realizing how easily it could end does that.

Thanks everyone for posting on my thread!  I didn't expect there to be any more responses. 😊

Absolutely! I can so relate to your thoughts during this time. Please keep us posted. We really do care 

[POS07-11-2014]

Great to hear from you! I am still struggling, but I totally understand taking each day more seriously.

We are doing that as well!