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Author Topic: Random thoughts  (Read 1034 times)

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Offline Doctor with hiv

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Random thoughts
« on: May 21, 2019, 07:20:20 am »
Hey Everyone..how are you all doing..So a lil update on myself my CD4 is 700 ish and am UD since 8 months of diagnosis..m in tivicay plus descovy.. Altho m doing fine both mentally and physically..but i do have these constant fear of what if my meds stop working or wat if I get side effects...Just wanted to know from the long term survivors that how hard is the journey ahead..???
I know it's a v irrelevant question because no one can decide ur fate but still sometimes I wish I had a time machine and I cud luk for all the struggles I have to go or face in future
I just wish to stay on this same regimen forever..and I really want to thrive well not just live well...
Love to all

Offline MarkintheDark

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Re: Random thoughts
« Reply #1 on: May 21, 2019, 09:32:41 am »
I guess the simplest answer is that you'll cross that bridge when/if you come to it.  It's not like you're without options.  Though "what ifs" can sometimes be useful, if they're causing you fear that's not useful, imo. 

Looking at how it is for you TODAY, you're responding well to treatment.  Yes, you're still adjusting emotionally.  That's normal.  But, really, it's ok to get on with your life.
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline Jim Allen

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Re: Random thoughts
« Reply #2 on: May 21, 2019, 10:57:17 am »
Hiya Doc,

Look plenty of combo's now, and as the years go past there will plenty of newer combo's again so if you ever need to switch its okay, switch. In the meantime though as long as you keep taking your meds there is no logical reason to worry about them not working. You know that yourself logically speaking already, its just doubt and, lets be honest doubt is not always rational

Truth is nobody can predict the future and, you could be run over by a bus tomorrow or fall down the stairs and break your neck ...  This was the same before your HIV diagnosis and, remains the same post HIV diagnosis. Nothing changed in that respect.

I know the diagnosis can be totally mind twisting at first, however you are not alone in this.  Give yourself real time to digest the news, and remind yourself its okay to have doubts even when they are not the most rational, personally i tend to think it takes at least year or two for most people to really digest a HIV diagnosis

Long term though don't waste you life wondering "what if" because it will pass you by.

Best. Jim



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Offline Doctor with hiv

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Re: Random thoughts
« Reply #3 on: May 22, 2019, 12:22:06 am »
Thanks Jim and Mark
I agree it will take time...but I will be there..🙂
M really glad to find this forum ...Hope everyone is doing and thriving well...Love to all

Offline em

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Re: Random thoughts
« Reply #4 on: May 24, 2019, 10:39:05 pm »
some things in life can change instantly   others can seemingly take an eternity.

the changes over the past thirty something years for HIV  have seemed slow but monumentally  earth shattering. mile stone marker to mention. drugs doing next to nothing to stop the virus and boost T-cells . to keeping the virus in check as in undetectable  and keeping T-cells steady in the seven hundreds. for me this was 1997

steady pill taking it has been for me over twenty years of relative good health. this advancement may be further over shadowed by something on the near horizon coming for us some day just around the corner that will remove the virus all together and return feeling of the energy I have felt i lost . this could be just psychosomatic for me and the energy loss is do my own feelings of having the virus making me feel it is better to not go out into the world but instead to try and stay hidden from the world . do to my own stigma of the virus I carry .  or the meds taking their toll on me making me less energetic then I may have liked. less energy is better then dying ?

 sorry to go on so much . I am sure this enough of what  I think on the topic. 


it is 2019 all things remaining constant life should go on way better than it did in the dark ages of the recent past . for anyone living with HIV

I hope this view point helps

EM

Offline leatherman

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Re: Random thoughts
« Reply #5 on: May 25, 2019, 06:13:26 am »
i do have these constant fear of what if my meds stop working
treatment failure is usually caused by developing resistance. if instead of daily adherence to your meds, you begin to take them off-n-on it's possible for the med level in your system to drop too low which might allow HIV to mutate and become resistant to your meds. When this happens you'll see your VL rise greatly and have to change to another regimen. (You might need a genotype test at that point to determine which meds are still effective and which are not effective against your version of HIV). But the meds don't just "stop working"; the meds quit working if you don't take them properly (i.e. daily and with whatever requirements your meds call for. for example some meds require food to reach the right absorption rate into your body). Unless you're screwing up taking your meds, then worrying about med failure is a lot of wasted energy, stress, and time.

I just wish to stay on this same regimen forever
you say that now; but most people change regimens because the meds have improved. I used to take 28 pills and 8 tablespoons of liquid meds a day to fight my hiv and now I take 2 pills. I'm sure glad I changed regimens. :) did you know that they are working on long-lasting injectables and pills that might need to be taken only once a week, once a month or maybe even once every 2 months? Are you that happy with a daily pill regimen that you don't think you'll ever change to reduce your pill burden (i.e. from once a day to once every 2 months is lot of pill reduction ;) )? Even if you like your regimen a lot, we don't know how much HIV meds will still change so don't stress too much about keeping the same regimen forever.... because you just might want to change it up some day. :)
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline leatherman

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Re: Random thoughts
« Reply #6 on: May 25, 2019, 06:41:44 am »
drugs doing next to nothing to stop the virus and boost T-cells . to keeping the virus in check as in undetectable  and keeping T-cells steady in the seven hundreds.
I would point out that technically ARVs (and no other meds either) do nothing at all to your cd4s. ARVs stop HIV replication, which destroys cd4 cells. and this allows your cd4s to increase to whatever level you might have based on your genetics. There is no medication or therapy that increases/"boosts" cd4 cells. Your cd4s are in the 700s because of the genetics passed to you from your parents. Other people have different optimal/"normal" cd4 levels ranging with about 400 to 1200. (personally after 27 yrs of meds, my cd4s are still around 325 and I am very healthy at 57.)

of the energy I have felt i lost . this could be just psychosomatic for me and the energy loss is do my own feelings of having the virus making me feel it is better to not go out into the world but instead to try and stay hidden from the world . do to my own stigma of the virus I carry .  or the meds taking their toll on me making me less energetic then I may have liked. less energy is better then dying ?
living with this issue so long, have you spoken to your doctor? Low energy may be caused by low testosterone, or perhaps the latent HIV in the reservoirs is causing too much systemic inflammation making you have low energy. Low energy could even be caused by anemia, low iron, low b12, or low vitamin d. The meds aren't "toxic" (well not to anything but HIV) and really should not be causing fatigue.

Feeling like you shouldn't go out into the world is an issue too. Because I was quite sick (very "aidsy" for over a decade) I was quite paranoid about germs and became something of a hermit. After more meds improvements came to market that worked better for me and I got healthy again, I found I had to have some counseling to get back to going outside into society like a "normal" person. If you feel you can't go out into the world because you are HIV+, you should talk to someone about these feelings. There is no red "H" on your forehead or any other way to tell from the outside that you are HIV+. Quite frankly there is no reason to stay inside hiding because there is nothing to hide - because no one would ever know your status unless you told them.

I hope you can work on resolving these issues to regain some energy and lose that stigma. ;)
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline em

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Re: Random thoughts
« Reply #7 on: May 28, 2019, 11:51:37 pm »
please feel free to correct this

ARV  like protease inhibitors. prevent the virus from infecting cells by blocking there ability to penetrate by chemically connecting to the protease receptors on the cells by flooding the body with  free floating chemical receptors in the body  the virus can not connect with the receptors on the cell membrane  and not allowing them to enter the cell they try to  infect   by inhibiting them from this  then the virus die unable to multiply.  but the virus being the deviant evolves to find other methods of replication and infecting cells . mutations. and all that . 

this intern give the immune system the chance to increase their numbers. definition of boost  ( help or encourage (something) to increase or improve. ) given it is an indirect result. but without the meds the immune system would continue to loss the battle nothing boosts the immune system ? the meds just help or encourage (something ) like the immune system  to increase or improve by definition . which intern boosts the health of the individual taking the meds . by preventing opportunistic infections and all the other nastiest advanced AIDS has to offer

My stigma is the way the world sees illness especially HIV  as bad things happen to bad people . those who have sex with the wrong people like those who might have HIV.  pay to play.  but then again those out there who never have the opportunity to share the intimate pleasures life has to offer so do they ever really live at all. anyway those people do not have children and their blood lines are branches on the family tree that do not bear fruit .  thinking like that makes people what they are. who needs them.

It Takes a Village: And Other Lessons Children Teach Us is a book published in 1996 by First Lady of the United States Hillary Rodham Clinton. In it, Clinton

  just taking the title  it takes a village ? > it also takes a village to make something go wrong . taking credit for the good things in life ; also requires taking responsibility for the bad . that is the life we were born into .

For evil to succeed, all it needs is for good men to do nothing. ...

 Martin Luther King Jr.

 “The only thing necessary for the triumph of evil is for good men to do nothing.” Attributed to Edmund Burke, including by John F Kennedy in a speech in 1961

Edmund Burke was from the eighteenth century,

in reference to doing nothing . like not taking HIV meds.

for the evil virus to win . not taking meds  is doing nothing ?

just saying . isn't google neat . i just got those references from google . must cite  my sources. do you believe I got a D- in high school journalism.   no need to answer that . but please do if you have something to add . not critique there is enough of that already.  please do not miss the intent of the topic by trying to find small inaccuracy to tear apart . you will miss the intended thought given  .

« Last Edit: May 28, 2019, 11:55:01 pm by em »

Offline em

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Re: Random thoughts
« Reply #8 on: May 29, 2019, 01:56:19 am »
was also thinking about when I was taking AZT way back when almost thirty years ago and became anemic . people told me it was because I was low on IRON ? I Thought OK the AZT had nothing to do with it . but then when I gave blood to be tested I asked my ID doc . the tcell cd4 count wold it be mine or would it be the blood donors ?

just a random thought . I felt worth sharing .


Me I am also in my fifties and have been taking meds longer then I thought I would have to . but now I take blood pressure pills and cholesterol pills . I also have to cut back on sugar being pre-diabetes /  so pill taking is part of my life for HIV and all the other stuff being old and lazy has to offer.

Offline em

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Re: Random thoughts
« Reply #9 on: May 29, 2019, 07:42:13 am »
please pardon my adding to this just had some thoughts I felt worth sharing

I left this part out it seems
while anemic I was given blood to make up for the low red blood cells .   My first thought after getting the blood was to go on a very long walk with the gift of the energy it gave me .


this seems to me to be good example of indirect


indirect the phrase taking food from the mouths of my children. when a parent does not get payed for the work they do.  resulting from financial hardship on the part of person they work for who can not pay them for their work or make payroll.   the employer is not directly taking the food from the child's mouth but indirectly resulting in the child not eating.  an example of indirect .


hindering the virus ability to replicate  viral load is decreased  thus giving the immune system the chance to recover and increase in number.    the virus is still there just not as victorious as it once was . 


does anyone else remember DDI . eating those tablets I thought why is the medical community punishing me .  .At least for me my immune system seemed like it was maybe a slower decrease but still dropping while taking it .   


as far as living well instead of just living . it sure beats the alternative of being dead

Offline leatherman

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Re: Random thoughts
« Reply #10 on: May 29, 2019, 09:43:24 am »
the meds just help or encourage (something ) like the immune system  to increase or improve by definition . which intern boosts the health of the individual taking the meds . by preventing opportunistic infections and all the other nastiest advanced AIDS has to offer
Correlation is not causation

the meds don't help or encourage the immune system. ARVs only stop HIV from killing your cd4s. Whether your cd4s increase (nothing "improves" cd4s. The cd4 count is only a quantitative test. there is no test to prove the quality/strength of cd4s) all depends on your immune system which you have because of the genetics your parents passed to you. (unless you have a stem cell transplant; but that's a point for later) In part that's why the range is so large (400-1200) because the range for a "normal" amount of cd4s is very different person to person.

so ARVs simply stop HIV from killing your cd4s; and without that deterrent, your cd4s simply go back to the level (or near the level) of whatever your normal count is. The ARVs don't encourage or help your immune system at all, they just stop the disease killing off cd4s.

the general wisdom is "more cd4s = healthier" and while that's pretty accurate that is not the whole story. Someone with a small amount of very effective/strong cd4s can be very healthy while someone with a higher amount of cd4s (but cd4s that are less effective) can be sickly.

The only rule that does seem to work is that if a person has >200 cd4s their immune system fights off opportunistic infections. Of course that doesn't mean that people with <200 cd4s are doomed to be sick because sometimes their immune system simply doesn't work anymore and they don't "get sick" although they are very unhealthy, and sometimes their immune systems still struggle along weakly keeping OIs at bay.

after 27 yrs of meds and 21 yrs since I was last in the hospital with AIDS, I'm lucky when I have 350 cd4s so I can certainly see that ARVs don't actively do anything to increase/improve cd4s. Oh! and I'm quite healthy, so whatever small amount of cd4s I have, they are pretty strong/effective cd4s as I am rarely ill with much more than seasonal allergies.

but then again those out there who never have the opportunity to share the intimate pleasures life has to offer so do they ever really live at all. anyway those people do not have children and their blood lines are branches on the family tree that do not bear fruit
many gay men "share the intimate pleasures life has to offer" and don't have kids. "their blood lines are branches on the family tree that do not bear fruit" - that's a pretty outdated patriarchal heteronormative opinion that more and more people no longer believe or teach their children.

was also thinking about when I was taking AZT way back when almost thirty years ago and became anemic . people told me it was because I was low on IRON ? I Thought OK the AZT had nothing to do with it . but then when I gave blood to be tested I asked my ID doc . the tcell cd4 count wold it be mine or would it be the blood donors ?
the way Zidovudine(AZT) works can destroy red blood cells (some white too) and often led to Zidovudine-induced anemia. (personally I stopped AZT when I needed a transfusion) A blood transfusion is often just red blood cells. A blood transfusion doesn't pass anything related to the immune system. Your cd4 test wouldn't be affected by more red blood cells, so it would be your results and not the donor. a stem-cell transplant (like part of the procedures for the Berlin Patient) can be used to affect someone's immune system. (mainly by killing it off with chemo/radiation and then implanting someone's else stem cells to create a new immune system) These are radically different procedures as a transfusion has little chance of death and a stem cell transplant has about a 45% survival rate.
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline leatherman

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Re: Random thoughts
« Reply #11 on: May 29, 2019, 09:48:56 am »
Me I am also in my fifties and have been taking meds longer then I thought I would have to . but now I take blood pressure pills and cholesterol pills . I also have to cut back on sugar being pre-diabetes /  so pill taking is part of my life for HIV and all the other stuff being old and lazy has to offer.
that's one of the things I always tell people when doing peer support. All sorts of people take all sorts of meds daily just to stay alive. People living with HIV are no different from anyone else with any of 1000 other diseases or issues. We have a health issue and we're treating it. There's no big red "H" on anyone's forehead, just like diabetics don't have a "D" or a big "C" on those dealing with cancer. Shake off that self-induced stigma and just take your pills - like everyone else is doing. ;)

does anyone else remember DDI
egads! AZT and ddI - we're going to scare off the newbies and the doctor (the OP) with talk about those meds. LOL For a while I crushed up those tablets (picture a tablet the size of a thumbprint cookie or a chlorine tablet for a pool skimmer that tasted exactly like chalk) and mixed them with drinks. After a while I just popped them in my mouth and crunched them up.

but speaking to the OP, that's why most people have changed meds through the decades. Not because the meds just quit working but because meds were improved (the ddI tablet is now a tiny easy-to-swallow capsule) or new, better meds came to the market. Just do like the rest of us: take your daily meds and talk to your doctor if you need to deal with a side effects or want to reduce your pill burden. Oh! and keep an ear out for changes to treatment, and make sure to discuss those with your doctor - who should also be wanting to talk to you about any changed or improved treatment for you.
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline em

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Re: Random thoughts
« Reply #12 on: May 29, 2019, 11:56:05 am »
may I add to this ?


many gay men "share the intimate pleasures life has to offer" and don't have kids. "their blood lines are branches on the family tree that do not bear fruit" - that's a pretty outdated patriarchal heteronormative opinion that more and more people no longer believe or teach their children.



how can truth be outdated.   some couples try as they will do not have children either . just the way life is.  side note  But on a upside to this fertility clinics as I understand it use sperm washing to increase sperm viability to increase the chances of achieving pregnancy . very cool something developed for HIV positive discordant couples to have children resulting from HIV developed technology .


homosexuality is pretty much just guaranteed birth control . that is what it is . two people of the same sex do not and can not make babies.  no one gets pregnant

they can like is popular now use a surrogate to have children or some adopt . it is great time to be alive .


with U=U being accepted life with HIV is a whole new ballgame.


what did a young  teen age me think about this forty plus years ago while in Jr high . IN 1976 the movie Logan's run was popular movie
. they had this what was like a dating app. where people put themselves out there for hook ups. the main character was viewing the people available for hook ups and this guy showed up on his stream.  while in school the teacher asked what the class thought of this . he said what do you think of homosexuality?. I chimed in with homosexuality is pretty much guaranteed birth control.  the entire class of children were stumped and dumbfounded the silence  was deafening and slack jawed empty stares .  I found quite amusing .  How is  this outdated can two men or two women create a child and give birth ?  outdated ? seems like a plus for those not wanting children ?

people who are so afraid of getting HIV who do not have a relationship ? just offering a some random thoughts . about life with HIV .


at this point I feel we are just splitting hairs. trying to find something to write to expand our understanding of HIV. and the other baggage that comes with it .  for this I apologize for not being concise and clear enough or offering thoughts more palatable for others wanting random thoughts as a topic is quite large.

all the best to you

EM

 


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