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Author Topic: please help me understand  (Read 55719 times)

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Offline Tonny2

  • Member
  • Posts: 2,175
Re: please help me understand
« Reply #100 on: October 30, 2015, 01:23:44 pm »
Got results on the VL today......

10-27-15 labs after 7 weeks, 4 days on Triumeq

CD4=522

VL UNDETECTABLE!!!   ;D ;D ;D

        ojo         ojo      hello my friend...I told you, now that you are UD, stop browsing in here and go and get a job...let me ask you this, would you rather have your previous cd4 and not being UD, or are you happy with this cd4 levels?....happy for you amiga...big bear hug...welcome to the UD club                 ojo

Offline PittGurl

  • Member
  • Posts: 327
Re: please help me understand
« Reply #101 on: October 30, 2015, 07:20:32 pm »
Jeff G and Wade.....Thanks to all of you for the big congrat's!   

Tonny2 - you know my smart comment is going to be  ....I would rather not be here at all  ;)  LOL  but since i am....im glad you are my buddy!

TriPolarTroy - im praying for the best for you!!! It's gotta be good news! Keep me up to date!!! Usually CD4's come back within 24 hours - the VL is the one that can take about 3-4 days. (at least where i am)
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

Offline Tonny2

  • Member
  • Posts: 2,175
Re: please help me understand
« Reply #102 on: October 30, 2015, 08:34:26 pm »
Jeff G and Wade.....Thanks to all of you for the big congrat's!   

Tonny2 - you know my smart comment is going to be  ....I would rather not be here at all  ;)  LOL  but since i am....im glad you are my buddy!

TriPolarTroy - im praying for the best for you!!! It's gotta be good news! Keep me up to date!!! Usually CD4's come back within 24 hours - the VL is the one that can take about 3-4 days. (at least where i am)

        ojo      Hola amiga, I'm just happy for you you will be fine, I'll see you back here in 20 years...va?...hugs                                                     ojo

Offline PittGurl

  • Member
  • Posts: 327
Re: please help me understand
« Reply #103 on: November 24, 2015, 10:52:39 am »
Question - obviously there are long term effects to all meds.....anything specific on Triumeq?
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

Offline CD4_800

  • Member
  • Posts: 98
Re: please help me understand
« Reply #104 on: November 24, 2015, 10:59:54 am »
Question - obviously there are long term effects to all meds.....anything specific on Triumeq?

Yeah I have the same question

Offline chwhyoche

  • Member
  • Posts: 42
Re: please help me understand
« Reply #105 on: December 01, 2015, 04:26:09 pm »
Hi I'm coming into the conversation late.   Sorry about your diagnosis.   I was infected as well by my now deceased husband.  I have been positive since 1999.  Didn't start taking meds til 2010.   A body can go a time without meds, but from my experience, 9 years seems to be the average time that the HIV overcomes ones health.  Who is to say I would have been better off or worse starting later or sooner.  I do know the meds can have ill effects, but the benefits outweigh the risks.  Every body is different. 

I am a 43 year old woman, and am doing fine now.   I'm on Triumeq as well.   Started on Atripla in 2010. Tried another in case of pregnancy.  Now off that regime.  I think the thing is to be healthy in your life and spirit.   
Yeah, the dating circle gets smaller and can be bleak, but honestly, it wasn't much better before, and HIV's silver lining is showing one's character.  If that makes any sense.  I have had men wanting to date me despite the HIV.   I always am upfront about my status. 
I have no current side effects from Triumeq.  Most of these new drugs are just recombinations of older ones, with some tweaking to get the ill side effects out.  Triumeq goes down easier than the other meds I have taken.  I think I have been taking it since August.  Atripla made me feel whoozy headed and drunk after taking it.   I don't miss that. 
Due to my vanity, one thing I worry about is facial fat loss.   But that comes with age anyway.   I had lost too much weight at times and that in itself takes a toll.  Stay at a healthy weight. 
Eat extremely well.  I eat so much healthier than I ever did.
Exercise and rest when needed. 
I think the depression and isolation that comes with the idea of being HIV+ can take a big wallop on ones health.   

All things happen for a reason.   I try to see what the this experience is teaching me and how it can help me grow spiritually.

Wishing you wellness.

Offline PittGurl

  • Member
  • Posts: 327
Re: please help me understand
« Reply #106 on: December 01, 2015, 09:57:43 pm »
chwhyoche - thank you for your response...i too am 43 year old woman infected by my ex-husband (or possibly 1 other person)  :(  I dont even know if either knows or not.

Im surprised (have heard this before but still ...)  at hearing that someone would chose to date someone with HIV when they are not positive themselves. There's no one for me to ask why that thinking....do you have any idea? I know love overcomes alot but HIV to me is HUGE and the what's if's of infecting the other person or the burden of taking care of someone....maybe im just ignorant in know all the facts yet but I guess i feel like i would be putting alot of responsibility on someone. :( 

Anyways, im really thankful to know that you have been on it too - only a month prior to me but still. :)  I find that I am pretty tired still but i think i am depressed and in the phase of still somewhat denial, angry, worried, - a big mess :(  I dont cry as much anymore but it still hurts really deep  -esp since my kids have no one but me....scares me
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

Offline Tonny2

  • Member
  • Posts: 2,175
Re: please help me understand
« Reply #107 on: December 01, 2015, 10:20:36 pm »


       ojo        Hi, my favorite lady, pitgurl...hugs on your way................ojo

Offline PittGurl

  • Member
  • Posts: 327
Re: please help me understand
« Reply #108 on: December 02, 2015, 12:22:30 pm »
Tonny2 - thank you so much :)  YOu are a true blue friend ;)  Praying for your eyesight
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

Offline chwhyoche

  • Member
  • Posts: 42
Re: please help me understand
« Reply #109 on: December 02, 2015, 06:19:16 pm »
I don't really understand either why someone would choose to date someone with HIV.   Maybe they are ignorant.   Or maybe they really care about the person.   But still, its not something to be taken lightly. 
One older man wanted to date me, and he did not know my status.   Besides not being interested, I did not want to mislead him and told him my status.   He did not care and still wanted to date me.  I thought that strange. 
I dated one guy for about 6 months.  Thought things were going okay.  Then he freaked out with worry.   He was negative.  He had other major issues though.   I usually attract narcissists.  Overall nice ones, but still. 
Next man was HIV positive, but was bipolar and relapsed from addiction suddenly, and overdosed.  He was a good soul.
Another was positive, but some of the ways people get this disease are from behaviors that are not conducive to a monogamous relationship.   Honestly, he had been to too many group sex fests, probably way out their type sex, and could no longer get an erection from just normal interaction.   Or maybe he had no attraction.  He bailed.
I have hope I have met someone finally that would last, but besides the HIV, he has major detachment issues, fear of relationships.
All good souls, but I'm realizing that there are maladies of the soul that are far more debilitating than HIV. 

I'm not sure how my husband got it.  He had been highly promiscuous.  I seem to attract men that have been highly promiscuous that want to finally settle down.  Most don't know quite how to go about relationships.  Lots of fear of abandonment, attachment and loss of what they perceive as freedom.   Though I must have my own issues to keep gravitating to such dysfunction. 

lol   Kinda all depressing in a tragic comedy sort of way.  I do get depressed because I do miss being married in a monogamous steady relationship.

I have heard that HIV is pretty hard to transmit if the person is undetectable.  I'm sure there's still a slight chance.  But if the lid is kept on the can as you said, then the risk is small. 

I understand how scary it is of being a single parent, but you and I will be fine.   Take your meds.  You'll stay well, and grow old and be healthy.   
Do take iron and calcium, as the meds seemed to leach the bones, probably along with the chemo.   But he always had health problems since birth.
One good thing is that I hardly get sick.  No flues, rarely a cold.    The meds annihilate all those bugs.  But we do need to be cautious about things like our liver and kidney function, and our bones.   I drink a vegetable fruit smoothie every morning, take cod liver oil, as well as a vitamin D supplement, B vitamins, calcium.   Red palm oil, coconut oil.   I separate them out of course.   Vitamin D is critical for those with HIV, as with other immune suppressive diseases.  Some of these doctors don't stress this enough.  But they don't live with this.   I've done my research and felt the effects of low D, and yes it is critical.   

I console myself with the knowledge that things happen as they are supposed to, life unfolds as it is meant to, all that is, is how it is supposed to be.    Our task is to learn the lessons the experience gives us.  We are souls first, bodies second, and this is definitely a soul journey.


 
« Last Edit: December 02, 2015, 06:26:17 pm by chwhyoche »

Offline PittGurl

  • Member
  • Posts: 327
Re: please help me understand
« Reply #110 on: December 02, 2015, 10:11:46 pm »
chwhyoche - your post was a balm to my soul....thank you for taking the time and writing out all you did....i haven't met anyone yet that is a lady, hetero and single now. The women's board isn't very active which is frustrating too :(

Do you live in a large city? I live in a very small town and there are little if NO dating options, plus it would leak out quick :(  i can't risk that....and honestly....not sure how i would ever trust a man again since most likely my husband or the other man after husband left me - one of them knew and gave it to me :( 

I totally get what you are saying about attracting dysfunctional men....i too have that issue....i wish i knew why! Maybe i dont feel i deserve someone as good or better than me.  Im seeking a therapist to deal with some of this in the next few weeks.....its taken me some time from everything else i had to deal with to be able to fit that appointment now into my schedule LOL :(  I totally miss feeling hope, excitement, flirting with the opposite sex in dating.... - i think i will always feel like im hiding something until i disclose and then when i do tell....all the what-if's!!

I too do alot of organic and smoothies with spinach and kale, chia seeds, papaya, walnuts, greek yogurt etc etc!   I was told the liver and kidney with Triumeq doesn't affect those? or am i being told wrong?  I take a B12 mouth spray (whole food organic) and a multi vitamin (just started that one2 days ago) but i take them 6 hours after the Triumeq bc of absorption and binding issues per Dr.  Hmmmm i wonder if I should add in a D and Calcium?  Please explain the D as it relates to the virus, if you have a moment?  I use alot of coconut oil too - sometimes in the smoothie, in my coffee, i cook with it, on my hair, sometimes my face and skin, etc etc.

You seem very well educated and i would love to continue to compare notes with you!  Have you noticed any hairloss or thinning? How about with menstruation?

Thank you so much!!!!!



Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

Offline chwhyoche

  • Member
  • Posts: 42
Re: please help me understand
« Reply #111 on: December 03, 2015, 01:53:39 am »
I'm glad my words can comfort you. 
I think hetero women don't speak up much in regards to HIV, or let their status be known.    Occasionally I will see women at my clinic that are much like myself, but it is just in passing.  I go so infrequently, but would like to get to know them.   I do have a friend who I met at my clinic (who I really need to catch up with .. she lives 4 hours away) who shared with me that she has hiv as well as her then 16 year old child.   The mom had it for nearly 20 years (got it from a partner) and the girl since birth, and if she had not told me I would not have been able to tell.  They look so healthy.   Plus they began when the drugs were a little harsher.   Healthy living does a lot for living well with this illness.
Plus my ex-boyfriend who eventually overdosed, he had it for 25 years or more, and many of those years he was doing drugs and drinking.  He said that sometimes when he was using drugs, he would go long periods without even taking the HIV meds.   Weird thing is that he never went below 600 or so tcells.   He must've had 9 lives.   So it depends on the persons genetics perhaps. 
REgarding the Vitamin D, google HIV and Vitamin D and it will bring up articles regarding a study that was done.   
Another person I know, takes the meds on 3 days then off a day, uses prescription Vitamin D, and maintains a tcell count at the high end of the spectrum.  But thats just him.  I tried for a couple months, and it did not work for me.  Tcells went down.

I just learned the other day at this organic market I go to that Co-enzyme B Complex is best .   Co enzyme makes it already metabolized so the liver does not break it down.
The liver and kidneys have to filter these HIV meds to my knowledge because they are the bodies filters.   Perhaps he meant they do not put a heavy loaded burden on them.   But I figure we have 40-50 years using these drugs so best to give our organs as much consideration as possible. 

My hair thinned when my tcells got very low.   I also got night sweats and oral candida.   What happens when the tcells plummet is that the candida runs rampant and from my experience this contributes to hair loss.    All that was reversed when I started the meds.   Its only been 6 years and my viral load is undetectable and tcells average about 400.  Everyone has a different "normal" when it comes to tcells.  My deceased husband had tcells of about 700-800 and was undetectable but still had full blown non-hodgekins lymphoma.   But again, every body is different and he was sickly since birth. 

Oh, regarding dating, there was another guy who I met as friends at Whole Foods.  He had a child as well.   We became good friends, then the moment came, as most male female relationships happen when I could tell he was interested.   I told him I was HIV + at that point, and he was no longer interested.  LOL   It was minorly disappointing simply because I was being rejected sort of.  But I got over it quickly.  We continued as friends and it was actually kind of nice to have a male friend without the possibility of it becoming a sexual relationship. It was like having a girlfriend with the lovely ways of a man.   But then he became a jerk in other ways.  Lol  See because he had no interest sexually in me, he let his jerkiness show.   So he would tell me how he was dating online but was not telling his partners that he had Herpes.   He was just a selfish asshole.   So I'm glad the HIV kept us apart.  Our friendship finally ended because he was becoming advantageous monetarily.
Ironically, several years later, he bought some sandals from me on Ebay.  I thought it funny that the name of the buyer was his name.  Plus the buyer wanted to meet in person to save money on shipping.   I thought it could definitely be his cheap ass. 
I meet up with him and he wanted us and the kids to get together again.  He looked so much thinner and sickly.   He told me he developed kidney disease.   I sympathized.  But then, get this!, I could see that he was interested in me again.  I guess he thought his sick ass and me would now be the perfect match.  LOL     after a few get togethers with our kids, his manipulative ways irritated me again.   Then came termination of friendship for the second time.  lol   I thought the whole meeting again was funny.  The Universe has a sense of humor.

Why we pick dysfunctional relationships is something I've been researching.    Want to understand why I pick who I pick and vice versa.   Look up special relationships versus holy relationships.    Special relationships reenact the past; the other person is to atone for what has happened to you in the past by those who you perceived as hurting you; and also the hope that this time it will be remedied, and forgiven.   But usually it just repeats over and over.  Different actor, same script.  And both parties are guilty.  Until there is an awakening.  I think the hiv experience is an invitation that for now, just to focus on myself, and not a partner.  Its never been something I have been good at.   I preferred being distracted with caregiving and becoming immersed in the other persons needs.   Ugh.   Sex is the only thing I miss.   But if the relationship is not going well, that becomes less satisfying too. 

A girlfriend of mine (not hiv+) is having similar relationship issues.   Her therapist told her that "her picker is broken" and for now until she gets her picker figured out and operating correctly, its best to stay single.  I thought that was so cute to describe the affinity towards dysfunctional relationships as having a broken "picker" . lol   

Regarding food: a good book is Nourishing Traditions.  Although it does promote a lot of meat eating.   Bone broths are very healing.   I think thats the book that I looked about fermentation and soaking as well.   Nuts should be soaked because they contain phytic acid which is hard on the digestive system and if I remember correctly, an extra burden on the kidneys.   Soaking and then drying them in a food dehydrator is easy.  Raw vegetables also have phytic acid.  Sauerkraut and the juice is awesome.   Many a time it has eased my indigestion.  The meds can mess with the stomach and cause indigestion.   By the way, cashews are legumes so no need for soaking.   I'm in the process of gaining weight.   Would like to go from 113 to 125 or a healthy 130.   Skinniness is not easy on the face past 40.   So I have a container of cashews on my kitchen counter and I eat nut butters by the spoonfuls.     
Food derived vitamins are best, not the synthetic ones.   Again they are more easily digested. 

It helps me writing this out to you.   :-)     Things really will be just fine.   Its just the adjustment to a new way of living.   honestly, I'm way healthier now than pre-hiv.   I was so ignorant to nutrition and health back then.   I even ate Mc Donalds back then!   GROSS 
lol
« Last Edit: December 03, 2015, 02:01:17 am by chwhyoche »

Offline PittGurl

  • Member
  • Posts: 327
Re: please help me understand
« Reply #112 on: December 03, 2015, 10:41:28 am »
Hmmm my dr is thinking that the thinning of hair may have to do more with the stress i am/was carrying and all of the changes. I think my number since infection have been pretty good and I went UD within 7 weeks of starting meds.

Yikes on the meeting of that guy TWICE! LOL   freaky!!!

I definitely have a broken picker - i think it's been broken a very long time UGH!  I like that word "picker"   hahahah

I went from almost 200 down to 160/165 in 4 months  - its weird to see myself now. I wasn't eating from the stress of moving twice in 6 weeks, then husband leaving, then infected....people say i look really good but im so not used to it that i feel weird and i didn't lose it the traditional "gym" or "working out" way so i almost dont know what to say ....uh thanks? i was sick or sero?  lol

I eat pretty healthy (fish, chicken, veggies, fruits) just dont have a huge appetite....i could go on 1 meal a day. Food just doesn't look as good as it used to. Im tired of eating the same things too - seems like its all running together plus i hate to cool :)  But im not a soda or fast food person but love love love breads!!!
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

Offline Wade

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Re: please help me understand
« Reply #113 on: December 03, 2015, 10:59:03 am »
Hey Gurl,
Sounds like you are doing PDG  !
I like your broken picker finger....I had one a couple times...Lol
You stay well ,Wade
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Offline chwhyoche

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Re: please help me understand
« Reply #114 on: December 03, 2015, 12:18:58 pm »
The more you eat the more you will want to eat.   I am the same way.   I could go on one meal a day, but its really bad to do that long term, especially since our bodies have the extra stress of digesting the meds which are so strong.
We also need the extra weight in case we ever do get sick, to have some fat reserves.

Its probably the depression as well making you have less appetite, and the meds cause my appetite to decrease as well.
Get some nut butters and just have a couple of spoons of it between meals.  And avocados are great and will improve hair texture. 

Doctors and even aids denialists will blame either our side effects from the drugs on stress or the fact that we are succumbing to HIV without taking meds on stress.   Well stress does play a part, it is true that the meds can have side effects and the virus (regardless if it was manufactured originally or not) will eventually overcome the body.  Thats a whole other topic.  ;-)

The fruit veggie smoothies every morning seem to be helping me a lot, feel better and gain a healthy appetite.   I put organic tofu in them as well, to hopefully counter the lessening estrogen as I get older.   Cilantro is really good too.   

I think once our bodies are nourished and well, we can overcome the depression and get to work on fixing our pickers.

Offline samm2015

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Re: please help me understand
« Reply #115 on: December 03, 2015, 04:56:53 pm »
the virus (regardless if it was manufactured originally or not) will eventually overcome the body.  Thats a whole other topic.  ;-)

Hello chwhyoche, thanks for your inputs i really found your suggestions about nutrition helpful. However, it really disturbed me that you would make a statement something like this. I dont know what makes you have that opinion. would you like sharing some resource/links that can help us understand your viewpoint?

there are many newly diagnosed here including me and the OP who are still trying to come to terms with the diagnosis and deterrent statements like this only grow the irrational anxiety or fear in them.

Pittgirl, I got my first fill of Triumeq today. I will share the experience with you all very soon

Offline PittGurl

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Re: please help me understand
« Reply #116 on: December 03, 2015, 10:21:10 pm »
samm2015 - thanks for your input - i am very very interested in hearing your experiences with the Triumeq.

I'm thinking that maybe chwhyoche meant that even though we might not die from the HIV per se....but that the virus will cause more weakness or susceptibility for other issues down the road. Not sure...but that was how i took it? 
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

Offline chwhyoche

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Re: please help me understand
« Reply #117 on: December 04, 2015, 12:02:49 am »
Sam, not trying to stress you.   But rather encourage.  I will clarify in a bit.
« Last Edit: December 04, 2015, 12:08:34 am by chwhyoche »

Offline chwhyoche

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Re: please help me understand
« Reply #118 on: December 04, 2015, 01:29:52 am »
Sam, I totally understand how this is all new to you.   But the statement is not a deterrent statement but rather a warning to adhere to the meds.   There is so much information if one starts to really dig deep and research that it can scare a person into thinking it is better not to take the meds, and while some may go for awhile without, the effects of being HIV+ will eventually cause in severe decline in health. And its not due to stress.   It really bothered me when some told me my AIDS symptoms were due to stress.   I had been stressed before in my life and didn't develop night sweats, candida and wasting.   It is a pretty well known fact that HIV by a admittance of Merck's  Dr. Maurice Hilleman  was intentionally put into vaccines in the 80's , but regardless how it came to be, the disease will cause one to become sick.  And the meds are so much better now days.   We are lucky not to lived in the times of AZT monotherapy! 
I should have started earlier on the meds, but I didn't because I research too much and the information made me too paranoid and scared to take the meds.   
I would hate for another to do this and get sick.    You may have misunderstood my information to be deterrent but actually it is an encouragement.   

I take my daily med and eat as nutritiously as possible.   :-)  Do that and everything will be fine.

Offline leatherman

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Re: please help me understand
« Reply #119 on: December 04, 2015, 02:34:51 am »
It is a pretty well known fact that HIV by a admittance of Merck's  Dr. Maurice Hilleman  was intentionally put into vaccines in the 80's ,
that is untrue.  >:(Hilleman discovered a simian virus SV40 in the polio vaccine in 1959. The polio vaccine has not been contaminated with sv40 since 1963. HIV has never contaminated any vaccine. HIV is a disease that has been traced back to Kinshasa African in the 1920s. At some point, thanks to global travel, HIV was carried to the states where it was introduced in the subgroups of homosexuals (through unprotected sex), hemophiliacs (through an unprotected blood supply at the time) and injection drug users.
http://www.skepticalraptor.com/skepticalraptorblog.php/polio-vaccines-cancer-debunking-myth/
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
Isentress/Prezcobix

Offline PittGurl

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Re: please help me understand
« Reply #120 on: December 04, 2015, 08:33:02 am »

I think once our bodies are nourished and well, we can overcome the depression and get to work on fixing our pickers.

LOL.....yes at some point i hope to fix my "picker" lol....wishing the same for you too  :) 
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

Offline mecch

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Re: please help me understand
« Reply #121 on: December 04, 2015, 09:24:56 am »
Hi I'm coming into the conversation late.   Sorry about your diagnosis.   I was infected as well by my now deceased husband.  I have been positive since 1999.  Didn't start taking meds til 2010.   A body can go a time without meds, but from my experience, 9 years seems to be the average time that the HIV overcomes ones health.  Who is to say I would have been better off or worse starting later or sooner. I do know the meds can have ill effects, but the benefits outweigh the risks.  Every body is different. 

9 years ago there were mixed opinions about starting meds at diagnosis. 


There are no longer mixed opinions about this and all rich countries (that I am aware of) recommend treatment at diagnosis and pay for it. 

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

Offline mecch

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Re: please help me understand
« Reply #122 on: December 04, 2015, 09:29:57 am »
I don't really understand either why someone would choose to date someone with HIV.   Maybe they are ignorant.   Or maybe they really care about the person.   But still, its not something to be taken lightly. 
One older man wanted to date me, and he did not know my status.   Besides not being interested, I did not want to mislead him and told him my status.   He did not care and still wanted to date me.  I thought that strange. 


Each person has their experience in their location and in their particular community.

Each person is entitled to their own feelings and actions about sero-discordant relationships.

I had gay relationships from the 1980's until now in NYC and Europe.  And had experiences in these gay communities.  Sero-Discordant relationships are not the norm but in my experience they are common enough and they are not considered strange.  They were not even strange before the treatment existed.  Now in Europe seri-discordant relationships can be quite banal because in some communities the fear has gone way down with all the knowledge about treatment and effectiveness and options such as PREP etc. etc.  And heterosexual sero-discordant couples having babies the old fashioned way (unprotected sex - which is now "protected" sex because of the drugs).
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: please help me understand
« Reply #123 on: December 04, 2015, 09:36:08 am »
chwhyoche

Could I encourage you to educate yourself a bit more and not post lies/misinformation and conspiracy theories that only make newbies nervous and perhaps confused.

No Swiss specialist has ever told me that the virus is going to win.  I have been HIV+ for about 7 or 8 years and treated from a few months after infection. Every Swiss specialist I have seen has said to expect a normal lifespan and total control of my infection for life, or until there is a cure.

Secondly, believe what you want about conspiracy theories but they are just that. 

And, they can be counterproductive to living well with HIV.  Most HIV+ people have to empty the virus of all meaning and design, and use science and the medical establishment to treat it, which it does very well. 

Thinking that the virus "means something" meant millions HIV+ people DIED in the past. Why treat something degenerates get?  Why treat something that "doesn't exist". Why treat something that is a product of Big Pharma, or the CIA, or planned murder of africans by white people, or is simply "bad faith" or blah blah blah blah blah blah blah.


Thinking that it is warfare by the establishment, is counterproductive to getting people to deal with it as matter of factly as possible using experts to treat their infection. 

If people do not trust the medical establishment, it is counter productive to their own health.   I see that you agree with me on this point so why bring conspiracy theories into the mix when helping someone dealing with a diagnosis and living well with this infection?
« Last Edit: December 04, 2015, 09:39:18 am by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline chwhyoche

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Re: please help me understand
« Reply #124 on: December 04, 2015, 12:21:18 pm »
mecch, you don't seem to understand me.

I take my meds.  I trust they work now.   AZT monotherapy did not for so many.   
I accept there is corruption.  There is profit in illness and disease.   This does not mean that I think the meds do not work now.   They are whats keeping me alive.  Never did I say I would not live a normal life span.   I'm in my 40's , so I reckon another 40 or 50 years is a reasonable lifespan. 

There are conspiracy theories and conspiracy fact.   
But my point is that although they may exist, that being HIV + will have long term negative health effects regardless how it originated,  IF YOU DO NOT TAKE YOUR MEDS.   Got it?   I am encouraging not to get caught up in the debate if HIV is real or not and let that prevent you from taking medications, regardless of conspiracy facts.   HIV will eventually kick your ass if you do not take your meds.  So Take your meds.   
« Last Edit: December 04, 2015, 12:24:12 pm by chwhyoche »

Offline mecch

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Re: please help me understand
« Reply #125 on: December 04, 2015, 03:35:35 pm »
Ok glad we are on the same page.

See, I thought you were claiming that Dr. Hilleman put HIV into vaccines and he never said anything like that. He said maybe infected monkeys were used in vaccine research before the HIV virus was known.

HIV would NOT survive in an everyday environment, outside the body in a "vaccine" - so I was worried you have this fear that HIV was spread through vaccine serum loaded with HIV.   Ridiculous.

And I, and other posters here, thought you were saying treated people are going to get sick with HIV eventually no matter what. 

So, glad to hear you didn't say that.   
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline samm2015

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Re: please help me understand
« Reply #126 on: December 04, 2015, 03:48:30 pm »
Hello chwhyoche,
 I agree with what meech said, even though you didnt mean to say it that is how it somehow sounded, and we thought you are saying that inspite of taking meds virus is eventually going to come over.

you can understand how that can be perceived as deterrent.
but glad that you are pro treating virus as soon as possible :)

Offline chwhyoche

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Re: please help me understand
« Reply #127 on: December 05, 2015, 01:16:28 am »
No.  I didn't say that.   
I personally don't believe the monkey theory. 

I just wish someone would have spoken straight forward with me initially, instead of negating the corruption.   Because if someone omits information from me a little, then I doubt everything they say.  And being newly diagnosed, as you can imagine, once I started researching and finding conflicting information, I became frozen like a deer in the headlights, too scared to start the meds.   And there will be folks who encourage HIV+s not to take the meds, but instead do natural therapies, but those do not work long term.  Whatever comes with being HIV is too aggressive and will kill a person if they are not treated.
If treated, we can live long lives.   Well, thats if you don't eat garbage and ingest other nasty stuff.

Offline mecch

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Re: please help me understand
« Reply #128 on: December 05, 2015, 08:01:36 am »
chwhyoche

I guess that you see some information is science and some "information" is bias- and lie-based argument.  So its a false equivalence to say there is conflicting information. This is no "information" that says don't treat HIV, these days. That would be a lie-based argument. not info.

I am not so much telling you that as putting that on this forum in this thread. 

There is still old information, of course, from old science, on the Internet. So it is important to look for dates on anything one reads.

chwhyoche
My personal politics is that we should take a critical eye to the excesses of the institutions of any social system - so yes, capitalism, and of course authoritarian countries too.  We can be critical of Big Pharma, for example, about some things. We can distrust governments and their surgeon generals and their police and spy networks. Look what happened in South Africa with AIDS denialism - a mini genocide.  Look what happened in many poor countries for over a decade when HIV treatment was available mostly only to rich countries. 

So yes, a very critical eye about politics.

But that is apples and science is oranges.  I realise that not so long ago, science could be corrupt but mostly in my lifetime, not so much.  Institutions doing science or using science, yes, keep the critical eye.

So we don't throw out the science with the bathwater.  That means we DO trust our doctors and we do trust science - with scientists working in a network of thousands, by research labs, universities, and pharma companies.  They used science to get a drug that is proven to work - we can be critical about the institutions, but still benefit from the result of the science.

My personal choice and outlook in life is that I like experts to identify and if necessary fix my problems. I have to apply my smarts to make sure I am listening to an expert I can trust.  But I can never have the expertise of the expert - that is his or her job - that is his or her experience over many years, and education.  I have my expertise, others have theirs. 

I have no medical expertise so I pick doctors I trust and let them figure out and treat my medical problems. 

Everything I learned about HIV and its history was mostly for curiosity, psychology, and was not going to apply to the treatment of the virus - which is outside my area of expertise. Also always learning about the social contexts of being HIV+ in this world and how to deal and defend, etc.

Well that's my contribution to this thread.  Take what is interesting and ignore the rest. 
« Last Edit: December 05, 2015, 08:20:56 am by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline PittGurl

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Re: please help me understand
« Reply #129 on: December 06, 2015, 09:46:33 am »


chwhyoche

chwhyoche
My personal politics is that we should take a critical eye to the excesses of the institutions of any social system - so yes, capitalism, and of course authoritarian countries too.  We can be critical of Big Pharma, for example, about some things. We can distrust governments and their surgeon generals and their police and spy networks. Look what happened in South Africa with AIDS denialism - a mini genocide.  Look what happened in many poor countries for over a decade when HIV treatment was available mostly only to rich countries. 

So yes, a very critical eye about politics.

But that is apples and science is oranges.  I realise that not so long ago, science could be corrupt but mostly in my lifetime, not so much.  Institutions doing science or using science, yes, keep the critical eye.

This is where my distrust comes in....so thank you for addressing it so eloquently!  It's like a double edged sword....I consider myself pretty smart but YES BUT i will never have my dr's education or years of understanding this virus nor will i be so educated to understand the people that made and researched the drugs to combat it.....BUT i also do not trust the Big Pharma and Government one stinkin bit..... but i think not taking the drugs scares me more than what the Big Pharm & Govnmt could be up to in all these meds.  SIGH.....so i take the BIG HONKIN PILL every morning and pray for peace in my heart and mind......

« Last Edit: December 06, 2015, 09:49:11 am by PittGurl »
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

Offline leatherman

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Re: please help me understand
« Reply #130 on: December 06, 2015, 12:31:10 pm »
so i take the BIG HONKIN PILL every morning
think positively! (woohoo for the pun!) :D

you could be taking 4 pills every 4 hrs every day or you could be taking 28 pills and liquid meds throughout the day, trying to match pills with eating, pills 2 hrs before food, and pills two hrs after food. :o

Oh, I'm not suggesting your pill isn't big, or isn't somewhat of a burden to take; but as with any tough situation that happens that you must live with all the rest of your life (disease, deaths, breakups, relocation, etc), you have to find your happy spot to make peace with the situation so you can move on with a happy, productive life. ;D

that's Leatherman's Motivational Message for the day ;) :D
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
Isentress/Prezcobix

Offline Tonny2

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Re: please help me understand
« Reply #131 on: December 06, 2015, 02:48:32 pm »
This is where my distrust comes in....so thank you for addressing it so eloquently!  It's like a double edged sword....I consider myself pretty smart but YES BUT i will never have my dr's education or years of understanding this virus nor will i be so educated to understand the people that made and researched the drugs to combat it.....BUT i also do not trust the Big Pharma and Government one stinkin bit..... but i think not taking the drugs scares me more than what the Big Pharm & Govnmt could be up to in all these meds.  SIGH.....so i take the BIG HONKIN PILL every morning and pray for peace in my heart and mind......

         ojo      Hello my favorite gurl...now you are getting more stress by reading all this bs, who cares about if the virus was created, or if there is a consiperacy theory about goverment and pharma co., the fact is that we all have a virus, a virus who has been shown, I'm and example as many people here whom have been living taking meds for decades, that the onle thing tha suppresses de virus is that honkin med and others...like leatherman just said, in other words tho, you newbies are lucky to take just one pill a day, if it's to big, ask your doctor if you can cut it in half, you have even imagined, as leather mentioned, how difficult we LTS had it, and yes, we took toxic meds, we were guine pig so you guy now have eaiser, that what science does, someone has to suffer, even died  so other can have better treatments...so, my dear gurl, I wish I had the words to help calm your anxiety, I'm rreally sorry you have to go through all this stress and uncertenty, I just can tell you, that, do not worry about you have something to worry about, nobody know what will be the long effects in your body by taking triquem, the only thing you HAVETO DO now, its taking the med or not taking it, you made the smart choice to take it, so relax and keep enjoying your kids, they feel when your are anxious and I'm sure they are suffering...if I may, stay away from this site, go beack to your normal lefe (at least for awhile), you'll see it will make you feel better (some other members have told me that)..best of lucks, lots of love for you and your kids, they are the ones you have to concentrate in, I think..your buddy tonny2...hugs                                                                                      ojo

PS 2 leatherman, do you remember the taste of norvir  (ritonavir) liquid form?...the worse thing I have tasted in my life, thank God for science, don't you think so?

Offline JosephP

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Re: please help me understand
« Reply #132 on: January 07, 2016, 10:11:01 pm »
Well stress does play a part, it is true that the meds can have side effects and the virus (regardless if it was manufactured originally or not) will eventually overcome the body.  Thats a whole other topic.  ;-)


chwhyoche,
This is a very scary statement you made and I am glad you explained what you meant! I was dxd back in 2013 and went  thru a difficult time when reading on the internet about it. Had I read this post two years ago, I would have freaked out... Back then I thought I only had few months to live. My ID doctor, which is a fantastic woman, basically told me to stop reading! She told me I was making myself sick. I had symptoms of every sickness in the world... Her words... 'you are not dying of AIDS... You are living with HIV and if you follow all instructions, you will be fine. I am. And I thank her for her advice and insight...
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline JosephP

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Re: please help me understand
« Reply #133 on: January 07, 2016, 10:14:32 pm »
Pittgurl! "so i take the BIG HONKIN PILL every morning and pray for peace in my heart and mind." Great! Nice to hear you are doing well and lerning to live with this 'present' we received...
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline YoungNScared

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Re: please help me understand
« Reply #134 on: January 19, 2016, 02:35:42 am »

Offline CD4_800

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Re: please help me understand
« Reply #135 on: January 25, 2016, 12:25:04 pm »
This is where my distrust comes in....so thank you for addressing it so eloquently!  It's like a double edged sword....I consider myself pretty smart but YES BUT i will never have my dr's education or years of understanding this virus nor will i be so educated to understand the people that made and researched the drugs to combat it.....BUT i also do not trust the Big Pharma and Government one stinkin bit..... but i think not taking the drugs scares me more than what the Big Pharm & Govnmt could be up to in all these meds.  SIGH.....so i take the BIG HONKIN PILL every morning and pray for peace in my heart and mind......

High PittGurl. I haven't chimmed in ...in a while but I understand what you are saying about "Big Pharma" they basically control the entire planet and everybody on it and I don't take meds without letting my OCD take over and research the crap out of everything because I have had BiPolar Type 1, with mixed episodes, rapid-cycling, anxiety, severe Misophonia (Crippling annoyances to certain noises mostly people eating loudly) and mild OCD, my whole life and have always had to take a butt-load of medicine to achieve anything resembling stability. I'm currently living on a Federal Disability Pension due to having a 4 month long Manic episode which led to me being forced into an early retirement so now my full time job is achieving livable mental health which includes taking 4 years to get the med combo that works for me (Lamictal, Lisinopril, Ambien, Wellbutrin, Zyprexa, remeron) and in an effort to fall asleep I have about a 45 minute nightly routine which includes, melatonin, Valerian Root, mediation, mindfulness techniques and a bunch of other stuff. I've uploaded over 100 videos on my youtube channel explaining what I do every day to live with mania, depression and anxiety. Sorry I kind of got off track but the point I'm trying to make is even with all of that shit going on with me I still had anxiety about taking that Big Honkin Triumeq Pill for rest of my life manly due to the uncertainty of side effects and so far after taking for about 3 months I really don't have any for which I am so grateful. Okay so what I'm trying to say is even as bad as things may seem which this horrible diagnosis, and then getting additional mental health issues that are directly related to the HIV diagnosis and possible the meds to beat it there is always a Silver Lining to be found somewhere. I thank the Universe (I would thank God but I'm an Atheist) that I have 2 layers of very good health insurance to cover all of my treatments and meds for all of the shit I got going on. Obviously I would rather not be in this HIV & Bipolar Club but I am and still I understand things could be much much worse. We are alive, we are POZ and now we are stronger than every person we know. Not sure if any of my manic rambling made any sense or helped but just know that I'm sending Positive Energy in your direction.  ;)

Offline PittGurl

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Re: please help me understand
« Reply #136 on: January 25, 2016, 04:07:20 pm »
TriPolarTroy - thank you so much for your input!!!  Everything you said makes sense to me - i feel like sometimes Im on the edge of where you are with the OCD, research, letting my mind take over and anxiety.  It totally sucks and it takes a ton of energy to stay out of that mind cycle with or without meds. I did try the Zoloft but it's not working great for me - i had to go from the 50 mgs initially down to 25 last week. Was not feeling myself and couldn't sleep.

i'm trying to be thankful for everything and that takes alot too - im so jealous of "what used to be" and feeling like i had a life.  Now i just feel like im passing time and worthless except to my kids because they have no choice LOL...they are too young to be on their own and their dads arent involved. I think i will always be too scared to tell someone that might be interested in me - i think i will end up sabotaging it to defer the potential rejection. 

In an odd way, i do feel a tad bit stronger emotionally- but mentally and physically - it's a struggle everyday.  I look around and hear the clock ticking - wondering what's next for me - what's the med going to do to me - what dont "they know" about it. And in the same breath, i know that us newcomers are so fortunate not to be told we can't do anything for you - take these 25 or so pills. It's like a mental battle all the time.

Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

Offline chwhyoche

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Re: please help me understand
« Reply #137 on: January 28, 2016, 03:19:36 pm »
 "I don't take meds without letting my OCD take over and research the crap out of everything because I have had BiPolar Type 1, with mixed episodes, rapid-cycling, anxiety, severe Misophonia (Crippling annoyances to certain noises mostly people eating loudly) and mild OCD"

Troy, I didn't realize there was a title for my condition "Misophonia".  lol   I have it bad.   Some days I am so on edge, I will wear earplugs most of the day.   My son will tell me "The dog isn't barking (a few houses down), you can take the earplugs out."
I'm pretty sure I have a Bipolar condition.  I was always prone to melancholy, but now after several traumas in the last year, I can pretty much feel the "ride" .  One day I will be feeling a high mood, and so lately it pretty much guarantees the next will be low with some crying. 
I get a little weary of the medical establishment putting a diagnosis on every part of the human condition.   We can't even react to severe conditions anymore without being diagnosed and prescribed something. 

I'm OCD about some things, like I have ran out of our calcium supplement for the last week and a half, and I imagine our bones being leached of calcium as I type.   lol IRRATIONAL, I know!    .. maybe. lol

Offline CD4_800

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Re: please help me understand
« Reply #138 on: January 28, 2016, 03:33:50 pm »
Misophonia is very real ... I've only known about it for about a year but I've struggled with it most of my life .... "Micro" Noises make me lose it ....I mean like I have my finger on the mute button and as soon as I hear crunching, kissing, or any exaggerated sounds especially eating noises. I'm going to post a video talking about it here in the next couple of days 

Offline chwhyoche

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Re: please help me understand
« Reply #139 on: January 28, 2016, 03:44:27 pm »
Troy, I've got it pretty bad too.   I don't mind things I can control, but if its some noise that has a pattern I cannot predict or control, it drives me crazy.  Like the dog 5 houses down, or chewing, slurping, sniffing, chairs squeaking, ...  :o
I keep it to myself unless its just beyond normal.   Because I know I'm not quite normal in this regard.

Offline chwhyoche

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Re: please help me understand
« Reply #140 on: January 28, 2016, 03:45:21 pm »
I am interested to see your video.  Let me know when it posts.

Offline CD4_800

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Re: please help me understand
« Reply #141 on: January 28, 2016, 04:01:08 pm »
I'll send you the link as soon as I have it up

Offline leatherman

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Re: please help me understand
« Reply #142 on: January 28, 2016, 04:31:37 pm »
Misophonia is very real ... I've only known about it for about a year but I've struggled with it most of my life .... "Micro" Noises make me lose it ....I mean like I have my finger on the mute button and as soon as I hear crunching, kissing, or any exaggerated sounds especially eating noises. I'm going to post a video talking about it here in the next couple of days
lolz

I almost replied to this the other day. My two younger brothers and I have this disorder. They didn't know the name of this until I told them a few yrs ago; but we've all talked about this problem for years - with people thinking we're crazy for being "so sensitive to a few little noises".

I seem to have a harder problem with misophonia than my bros. It's interesting to see that we all react a little differently (mainly instant irritation/anger) with slightly different trigger noises (for one it's the smacking, for me it's the slurping and gulping sounds, for the other it's the clicking or crunching sounds.) Our mom may be losing her hearing; but she freaks out about the smallest nail-biting or nail-clipping sounds. She also has tinnitus issues which is associated frequently with misophonia (hey! while many people might not have heard about this disorder, spellcheck knew when I mistyped it LOL), so perhaps it's hereditary.

I compensate with more noise. At night, when every sound in the quiet house seems as loud as a political rally and twice as irritating, I either play music softly or a use a white noise machine. (although the volume has to be exactly right or even these sounds will grate on my nerves) During the day, if my mp3 player headphones aren't jammed in my ears, then the TV is on (like all the time on!) Quietness (or perceived "quietness") drives me crazy/angry!

https://en.wikipedia.org/wiki/Misophonia
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
Isentress/Prezcobix

Offline PittGurl

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Re: please help me understand
« Reply #143 on: February 01, 2016, 04:00:52 pm »
Hi everyone - quick update....see signature below....I called into the clinic and the nurse gave me an update. My dr appt is Wednesday and of course I will bring it up....but im concerned :( 

so labs came back VL undetectable (since October) but CD4 dropped again??

makes me sad :(  why would that happen? She said its only 42 points but in total it's almost 100 over 4 months....
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

Offline leatherman

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Re: please help me understand
« Reply #144 on: February 01, 2016, 07:34:06 pm »
perhaps you need to poke around some more of this website. I say that because I would have hoped by now you would have read some of the many entries about cd4s. so here's a quick primer:

1. cd4s can change by 100 pts within a day!

2. they are higher in the later afternoon (4p-6p) and lower in the morning hrs (10a-1p)

3. you need to judge your cd4s by the trend of at least 3 tests over a 6wk to 6 mo period. it never matters what one single test says; but what the trend is.

4. the "normal" range is between 400 to 1200. (your average of 522+ is certainly well in the normal range)

5. the quality of your immune system is based on your genetics, and there's little to nothing you can do to make it any better. Of course, improved basic health (exercise, healthier diet, etc) can help a person be healthier so their immune system is working at it's prime (that's quality vs quantity); but there's no med or magic trick to use to raise your cd4 level. As a PLWH about all you can do is to stay adherent to HAART to halt the HIV, so your immune system can work.

6. the cd4 count is simply a number representing the quantity of cd4s - not the quality of those cd4 cells. Some people with 300 cd4s are very healthy while others with cd4s over 1000 have multiple health issues. Usually more cd4s does mean a person has a more robust immune system; but not necessarily. (so quality is better although we'd all love to have a great quantity - even if a higher cd4 number doesn't really mean that we are "healthy")


Let's look at your #'s
8-2-15 CD4 286
9-21-15 CD4=570
(omg! in one month your cd4s doubled! plus you basically became UD)
10-27-15 CD4=522
1-28-16 CD4=479

your cd4 trend was a quick up and then leveled out. Technically, because of the 100 pt fluctuation within a one day, you have had NO realistic change in your cd4 counts since sept. yes, in this case 479 is equal to 570, especially with a mid-range test there in the middle. Graph it out and see the almost straight line. ;)

7. finally, cd4 counts are becoming less of a measurement anyway, quite simply because, as I explained above, the cd4 count doesn't show the "quality" ("hardworkingness", if that's a word LOL) of your immune system. Once a person gets over 200, and sustains UD, the CDC is recommending to check cd4s once a year because this count doesn't tell the doctor much clinically about your health.

Keep taking your meds because everything shows to be working incredibly well! :D
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
Isentress/Prezcobix

Offline PittGurl

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  • Posts: 327
Re: please help me understand
« Reply #145 on: February 01, 2016, 07:39:17 pm »
haha right after I posted that i did a search in the tool bar and saw how much the CD4 #'s fluctuated for everyone :)    I spent a good 2 hours reading posts

Question - why are they lower in the morning? All of my blood tests were done in the morning....

You are so smart and I thank you so very much for putting time and effort into my post....still a newbie here and definitely am so very thankful for you & the others. 
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

Offline leatherman

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Re: please help me understand
« Reply #146 on: February 01, 2016, 08:37:35 pm »
Question - why are they lower in the morning?
um, just because, I guess. LOL Your cd4 count is in flux all day long

did you know that the first 45 minutes after you exercise, your cd4s drop! it's not till nearly an hour later that you'll get a boost in the count after your time at Planet Fitness or wherever. Smoking a cigarette can actually give you a temporary increase of 50-ish points - before dropping down further than it went up.

(did you know that less than 10 yrs ago, >500 was undetectable?!?! And we were all hanging in there fairly well too. ;) but then as tests got more accurate the level considered to be undetectable dropped to 250, 100, 75, 50, 40, 20. Now they can measure down to 2 but the cost of that test vs. any "benefits" to diagnosing and treating the patient is negligible (meaning big cost but little help to the patient))

and that's why it's about the trend over time. A cd4 test is simply a snapshot of the moment when they took blood from you. If you had it taken every hour, you'd see that number jumping all over the place. LOL
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
Isentress/Prezcobix

Offline PittGurl

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Re: please help me understand
« Reply #147 on: February 01, 2016, 08:40:19 pm »
LOL gotcha! Thank you - can you imagine for something that is so anxious like me and borderline (self diagnosed) OCD hahah (i dont do handwashing or stuff like that - more just like things the way I like things neat and orderly) to see numbers jumping around like that every hour!?!?!? hhahahhaa! 
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

Offline mecch

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  • red pill? or blue pill?
Re: please help me understand
« Reply #148 on: February 02, 2016, 03:44:38 am »
Might be a good idea to stop self-diagnosing psychological conditions, such as OCD.  Of if you must, maybe cut out the "hahahaha", cause its not funny haha to people who have OCD, including the "hand washing or stuff like that."  It can be hell
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline PittGurl

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Re: please help me understand
« Reply #149 on: February 02, 2016, 09:38:10 am »
mecch - am so sorry - didn't mean it like that. I think the dr has somewhat diagnosed me with a slight case of OCD but for years has more focused on the anxiety and panic attacks but i think why she prescribed Zoloft is for the OCD too without really touching on it bc hearing another diagnosis would just drive me bonkers.

For me it's more mentally than actually physically. I fight hard to stop the physical OCD - i used to not be able to leave the house without dishwasher being empty, all beds made, entire house picked up, all electronics off or closed, needed to clean the bathrooms, all blankets folded with the fold facing out and the open parts against the wall. 

I remember the day about a year ago that my therapist instructed me write all of my OCD tendencies on pieces of paper and rip them up them drop them on the floor in my house. I could NOT do it. I tried but it bothered me in my core to see them - as i was instructed to leave them on the floor.  :(   

Im trying very hard to now just be OK with not folding up all the blankets and not making my bed - its hard bc I am a perfectionist and with kids - its even harder!

I apologize - i wasn't making fun at all - i guess bc my kids tell me all the time to stop being like this it was easier to poke fun at myself - please accept my apologies
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%

 


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