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Author Topic: A rough time here.  (Read 2467 times)

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Offline DallasJ

  • Member
  • Posts: 12
  • One day at a time.
A rough time here.
« on: August 17, 2014, 10:01:10 AM »
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.
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

Offline Miss Philicia

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  • Posts: 24,088
  • celebrity poster, faker & poser
Re: A rough time here.
« Reply #1 on: August 17, 2014, 10:13:11 AM »
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.
"I’ve slept with enough men to know that I’m not gay"

Offline DallasJ

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  • Posts: 12
  • One day at a time.
Re: A rough time here.
« Reply #2 on: August 17, 2014, 10:32:18 AM »
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.
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

Online mecch

  • Member
  • Posts: 11,681
  • red pill? or blue pill?
Re: A rough time here.
« Reply #3 on: August 17, 2014, 10:39:12 AM »
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


“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ptrk3

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  • Posts: 102
Re: A rough time here.
« Reply #4 on: August 17, 2014, 11:55:33 AM »
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.

Offline Almost2late

  • Member
  • Posts: 234
  • "My disease stops with me" - Jeff G
Re: A rough time here.
« Reply #5 on: August 17, 2014, 12:07:09 PM »
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
Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235  switched off Atripla
08/14     135    10%      110  stopped Azithromycin
Tivicay, Truvada, Bactrim

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!”
― Dr. Seuss

“Everybody dies … The thing is, to have a life before we die.”
― John Irving, The World According to Garp

Offline DallasJ

  • Member
  • Posts: 12
  • One day at a time.
Re: A rough time here.
« Reply #6 on: August 17, 2014, 12:18:23 PM »
Thank you all so much for the responses and advice.  It is much appreciated.
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

Offline Almost2late

  • Member
  • Posts: 234
  • "My disease stops with me" - Jeff G
Re: A rough time here.
« Reply #7 on: August 17, 2014, 12:27:35 PM »
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/

 ;)
Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235  switched off Atripla
08/14     135    10%      110  stopped Azithromycin
Tivicay, Truvada, Bactrim

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!”
― Dr. Seuss

“Everybody dies … The thing is, to have a life before we die.”
― John Irving, The World According to Garp

Offline Miss Philicia

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  • Posts: 24,088
  • celebrity poster, faker & poser
Re: A rough time here.
« Reply #8 on: August 17, 2014, 12:56:38 PM »
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.
"I’ve slept with enough men to know that I’m not gay"

Offline pittman

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  • Posts: 216
Re: A rough time here.
« Reply #9 on: August 17, 2014, 10:58:45 PM »
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.

Offline drewm

  • Member
  • Posts: 1,111
Re: A rough time here.
« Reply #10 on: August 17, 2014, 11:12:44 PM »
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.

Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline DallasJ

  • Member
  • Posts: 12
  • One day at a time.
Re: A rough time here.
« Reply #11 on: August 17, 2014, 11:26:42 PM »
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.
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

Offline Since1993

  • Member
  • Posts: 108
Re: A rough time here.
« Reply #12 on: August 18, 2014, 12:04:26 AM »
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

  • Guest
Re: A rough time here.
« Reply #13 on: August 18, 2014, 01:31:06 AM »
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. 


Offline DallasJ

  • Member
  • Posts: 12
  • One day at a time.
Re: A rough time here.
« Reply #14 on: August 27, 2014, 11:23:33 PM »
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.
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

Offline Almost2late

  • Member
  • Posts: 234
  • "My disease stops with me" - Jeff G
Re: A rough time here.
« Reply #15 on: August 28, 2014, 01:13:20 AM »
Great update.. Happy to hear this :)
Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235  switched off Atripla
08/14     135    10%      110  stopped Azithromycin
Tivicay, Truvada, Bactrim

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!”
― Dr. Seuss

“Everybody dies … The thing is, to have a life before we die.”
― John Irving, The World According to Garp

Offline weasel

  • Member
  • Posts: 1,681
Re: A rough time here.
« Reply #16 on: August 28, 2014, 12:04:06 PM »


    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  :)
" Live and let Live "

Offline drewm

  • Member
  • Posts: 1,111
Re: A rough time here.
« Reply #17 on: August 28, 2014, 03:16:04 PM »
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!
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline maxmarco

  • Member
  • Posts: 35
Re: A rough time here.
« Reply #18 on: September 13, 2014, 02:47:13 PM »
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

Offline Irish Eyes

  • member
  • Member
  • Posts: 397
Re: A rough time here.
« Reply #19 on: September 14, 2014, 12:15:54 AM »

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.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      Undetectable

Offline drewm

  • Member
  • Posts: 1,111
Re: A rough time here.
« Reply #20 on: September 14, 2014, 09:12:31 AM »
VL from 1,100,000 to 210 in a month! WOW! That's a damn good response to Atripla!
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline xinyuan

  • Member
  • Posts: 138
Re: A rough time here.
« Reply #21 on: September 14, 2014, 08:45:12 PM »
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.

Offline Irish Eyes

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  • Member
  • Posts: 397
Re: A rough time here.
« Reply #22 on: September 14, 2014, 09:21:14 PM »

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

Thanks and welcome back.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      Undetectable

Offline xinyuan

  • Member
  • Posts: 138
Re: A rough time here.
« Reply #23 on: September 14, 2014, 09:30:41 PM »
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.

 


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