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Author Topic: 3 months since AIDs diagnosis, sharing story, seeking support.  (Read 5242 times)

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Offline Pete_

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3 months since AIDs diagnosis, sharing story, seeking support.
« on: January 02, 2020, 04:47:22 am »
Hello, new here.

Wanted to share my story and seek advice from others whoíve been through this.

Long story short, I was diagnosed with AIDs almost 3 months ago with a CD4 count of 5 and a viral load of 820,000. Viral count successful surpassed by biktarvi. I am seeking advice from others in terms of their experience recovering back towards 200.

Yeah, I know, I fucked up pretty bad, should have gotten tested way before. If anyone reading this is unsure if you have HIV, please get tested, even if you only had one high risk encounter, and even if that encounter was a decade ago. Part of the reason for my late diagnosis was because I had very few ďhigh riskĒ encounters as a teen and had wrongly assumed I had been tested for HIV since then during physicals and blood work. I also wasnít experiencing some symtoms (like diarrhea) this year which was once of the main symptoms listed when googling about aids and HIV. I thought I just had a lingering bronchitis, and bad candida. Also blamed cognitive issues and headache on a previous concussion, which in retrospect probably had nothing to do with it. Probably lived about a decade with HIV and just was uniformed and naive(btw, Iím in my late 20s now). If you have thrush definitely get tested. Reoccurring thrush unresponsive to nystatin was what cause me to get tested, as I was certain I didnít have it. Boy was I wrong...

I wish the by default tested everyone for HIV when going to the hospital, having surgery(I had hemorrhoid surgery when I was younger), and at standard doctors appointments. People by nature have ďit canít happen to meĒ mentality, and I was so stubborn in that mindset, that I ignored the warning signs and waited till I was damn near dead to get tested. The swab test takes 5 minutes, so much suffering could be avoided if testing is standardized and normalized so naive people like myself can find out earlier on.

Anyway, I am responding very well to biktarvi. From viral count of 820k, to below 300, to now below 20. CD4 increase from 5, to 21, to 69(two months after diagnosis). Iím guessing I only have one strain of HIV. So, all seems good in those regards for outlook.

The year leading up to diagnosis and weeks following I can only describe as a hell labyrinth. I went to the hospital over 6 months prior to diagnosis for headaches that were lasting for weeks and fatigue, only to be discharged and given ibprophen after ct scan only showed sinus inflammation. The weeks leading up to diagnosis and after were to most difficult. My brain was affected. Whether from the hiv itself, bacteria and fungal infections, or simply protein deficiency, I am not sure. There arenít words to describe what I experienced, all I can explain is delirium and confusion but those words do not begin to describe what I was experiencing. More like reality collapsing. I was sure I was being poisoned, I did not assume HIV, and my mental faculties and grasp of reality was deteriorating. A lot of this I kept to myself, as I was sure there had to be some sort of physical cause, and didnít want to be put into the phsyc unit or put on heavy antipsychotics if I explained the full extent of what I was experiencing cognitively. Plus, previous doctors appointments and hospital visit didnít solve my health issues. Ended up self testing with a home hiv kit from Walmart.

Fortunately, my mental health improved drastically after starting the antiretroviral, antifungal, and antibiotics. Only lack of rest or eating causes the delerious feeling now. Though all in all it took a toll and doing my best to nurish myself.

The first few weeks of meds I physically felt much worse, and was unsure Iíd live(Wasnít sure if it was the cell count, hiv, acclimating to the meds, or what that was causing the symptoms, all I knew was I was feeling weaker and weaker day by day). I had severe full body hives and the lactic acid build up was so severe I was nearly unable to walk for a few days. Fortunately those side affects subsided. Also had pneumonia at diagnosis, fortunately cleared up without invasive procedure.

I started on biktarvi, fluconazole, and bactrim. I believe it was the bactrim that caused the hives, I had a severe liver reaction to it, and was switched to dapsone and azithromycin- which havenít caused me any issues. Btw, when I first started taking the meds, Iíd throw it all up and have dry heaving, and couldnít stomach water. I was prescribed ondansetron which worked like a charm for the neasea, thank God.

About a month after diagnosis I went to the hospital after having a fever that reached nearly 106 Fahrenheit(while simultaneously feeling extremely cold and was shivering). They did all sorts of tests, from bloodwork, to spinal draw, to MRI. Only thing they could find was acute sinitus, fortunately no serious secondary infections.

Anyway, I fell wayyy better after three months, and confident with my results so far that I will reach above 200 CD4. However, no where near feeling like a healthy normal person. I have more strength and resilience, which is promising. Gained 25 pounds since diagnosis, largely due to chugging many ensures and boosts. Going to give hydrolized collegian protein a shot next(was advised to use ďpro-statĒ by an infectious disease nurse). After experience the wasting syndrome, my main goal is to put on more weight. Protein deficiency was definitely cause of many symptoms. Iíve had all sorts of allergic reactions Iíve never had before, and have had reoccurring fevers. Went a few weeks without a fever then this week, bam, sinuses again. Earlier before writing this I had 101.8 Fahrenheit temp.

Anyway, that brings me to why I came to this forum. HIV treatment has change a lot in the past decades. Researching is difficult, especially researching for low CD4 aids diagnosis. So many google results lead me to content about how early detection can prevent aids blah blah blah - no help to me. Also when researching living with aids I see stories about stigmas and all that sort of thing but I really am more concerned about physical health and recovery process.

What I am looking for is someone who has survived a low CD4 AIDs diagnosis and made it back over 200 CD4. I want to know honestly what to expect. Based on my numbers from weeks ago Iím probably at 100 CD4 by now or close to it. While I am happy with the progress(I litterally feel 1000x better than I did the other months, despite fever right now, itís nothing compared to how I felt before, and no where near feeling like normal ďhealthĒ)

 What I want to know, is what was your progression like? Do you still get sick often? Anyone make a near full recovery and felt really healthy again?

If you gotten back above 200, how does your daily life compare - in terms of how you feel - compared to when you were healthy before diagnosis.

When did you begin exercising again?(I am still more focused on putting on weight and sleep than energy and exercise right now)

When did you start traveling again?(getting fevers still, Iím am staying home, away from crowds, and sure as hell not getting on a plane in the short term)

Btw, Iíve researched tonnns of supplements. Some seem good, but just a warning, some herbal stuff takes a lot of metabolizing- and so does the antiretroviral, so a word of caution be careful and donít over do it if you are newly diagnosed. Still figuring out optimal nutrition and supplements. And for the love of God, if you have a low CD4 diagnosis, seriously, no cigarettes or alcohol at all!!!(though you probably donít need to be told that if you were as ill as I was, no reminder is needed). Seriously at those levels, even going too long without drinking so water or something would cause bad reaction. I was like a car running on e and sputtering out.

One other thing, I have used metocloprimide for appetite. If I have appetite without taking it I avoid it. It can had side affects but if you are sick and have no appetite it helps and is worth it. I had side affects from the ondostron too (muscle teitching) and no longer need it, but damn sure better than nausea.

Anyway, thanks for the space to share my story. I hope I can find others whoíve had a similar experience and what life was like for you 6 months out, one year out, and so forth.

If anyone reading this is newly diagnosed, and is in the first few weeks and is struggling physically. Keep packing on the calories and sleep as much as you can.

Offline Jim Allen

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #1 on: January 02, 2020, 05:17:10 am »
Hiya

Sorry to hear about the diagnosis, although glad to hear that you have started HIV treatment and are settling into it with the VL being suppressed.

Plenty of people here have started off or at some point had extremely low or single-digit CD4 cells and I am sure a few will chime in. Thankfully, the Bactrim should only be temporary until your CD4's come back up but don't stress if they don't or it takes time.

Quote
The first few weeks of meds I physically felt much worse, and was unsure Iíd live(Wasnít sure if it was the cell count, hiv, acclimating to the meds, or what that was causing the symptoms, all I knew was I was feeling weaker and weaker day by day).

Quote
Anyway, I fell wayyy better after three months, and confident with my results so far that I will reach above 200 CD4. However, no where near feeling like a healthy normal person. I have more strength and resilience, which is promising. Gained 25 pounds since diagnosis, largely due to chugging many ensures and boosts. Going to give hydrolized collegian protein a shot next(was advised to use ďpro-statĒ by an infectious disease nurse). After experience the wasting syndrome, my main goal is to put on more weight. Protein deficiency was definitely cause of many symptoms. Iíve had all sorts of allergic reactions Iíve never had before, and have had reoccurring fevers. Went a few weeks without a fever then this week, bam, sinuses again. Earlier before writing this I had 101.8 Fahrenheit temp.

Yeah, you can feel much worse at first as the immune system "restarts" I suppose.  Keep in mind it's a journey, not a race and can take time to "heal" for lack of better phrase. I was knackered for about a year to 18 months, but things got better in stages.

Quote
If you have thrush definitely get tested.

Quote
If anyone reading this is unsure if you have HIV, please get tested, even if you only had one high risk encounter, and even if that encounter was a decade ago.

Although well-intended thrush is a bit like stubbing your toes in life, it happens to most people at some stage and instead of running out and testing or panicking people when they stub their toes instead any sexually active adult regardless of perceived high or low risk should simply be testing for STI's & HIV regularly irrespective of how healthy they feel or the presence/lack of any symptoms. 

Quote
What I want to know, is what was your progression like? Do you still get sick often? Anyone make a near full recovery and felt really healthy again?

I don't get more or less sick than my peers. Took about a year before I was near enough back to my old self, I was fatigued slightly longer 18 months to 2 years. That said some people bounce back to health within 3 months others take longer depending on their medical needs, conditions, co-infections they have picked up and the damage done etc etc etc

Quote
If you gotten back above 200, how does your daily life compare - in terms of how you feel - compared to when you were healthy before diagnosis.

That was a long time ago but my life is good, I feel okay. I have 2 kids, a career that I am happy with and I travel a lot.

Quote
When did you begin exercising again?(I am still more focused on putting on weight and sleep than energy and exercise right now)

LOL - I didn't until 2019 as I started to look slightly pregnant, ageing and bad diets.

Start whenever you feel ready to start again, just don't overdo it at first.

Quote
When did you start traveling again?(getting fevers still, Iím am staying home, away from crowds, and sure as hell not getting on a plane in the short term)

Within 4-5 weeks, it was rough as I was sick and travelling whilst sick always sucks but there was no need to avoid people or travel.

Quote
Btw, Iíve researched tonnns of supplements. Some seem good, but just a warning, some herbal stuff takes a lot of metabolizing- and so does the antiretroviral, so a word of caution be careful and donít over do it if you are newly diagnosed. Still figuring out optimal nutrition and supplements. And for the love of God, if you have a low CD4 diagnosis, seriously, no cigarettes or alcohol at all!!!(though you probably donít need to be told that if you were as ill as I was, no reminder is needed). Seriously at those levels, even going too long without drinking so water or something would cause bad reaction. I was like a car running on e and sputtering out.

Talk to your doctor if you have any deficiencies and need supplements, do keep them posted as some can interact with HIV meds. Smoking is bad regardless of your CD4 counts and alcohol in moderation regardless of your CD4 counts. I've never seen any link on low CD4 counts and water but being hydrated is a good thing to do anyway.

There is a lot of easy to digest information in the POZ lessons and in the intro thread here https://forums.poz.com/index.php?topic=2276.0

Also, don't overthink things.  If you want to live healthier than by all means do, plenty of controllable factors/issues you can work on in life such as quit smoking, moderate drinking, eating balanced, plenty of quality rest, exercise and looking after mental health/ mental well-being.

Just don't try to take on the world all at once  ;)

Best, Jim

https://www.poz.com/basics/hiv-basics/hiv-nutrition

Smoking:
https://www.poz.com/article/1-4-smokers-successful-hiv-treatment-projected-die-lung-cancer
Those who adhere well to antiretroviral (ARV) treatment for the virus but smoke are estimated to have a more than 10 times greater chance of dying of lung cancer
compared with dying of AIDS-related complications.

https://www.poz.com/basics/hiv-basics/hiv-smoking 
https://www.poz.com/article/attention-hivpositive-smokers-article-save-life
https://www.poz.com/article/people-hiv-tend-realize-much-smoking-shortens-life-span People With HIV Tend Not to Realize How Much Smoking Shortens Life Span

Drinking

https://www.poz.com/article/alcohol-buzz-27115-1109
HIV Is Linked to Getting a Buzz on Less Alcohol
https://www.poz.com/article/safe-alcohol-people-hiv
How Safe Is Alcohol for People With HIV?
https://www.poz.com/article/even-one-two-drinks-day-can-harmful-people-hiv
The safety threshold for alcohol use is lower for HIV-positive people

https://www.poz.com/article/heavy-drinking-tied-harmful-immune-response-people-hiv heavy drinking & untreated HIV are bad for you.
« Last Edit: January 02, 2020, 05:41:00 am by Jim Allen »
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Offline ZachR

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #2 on: January 02, 2020, 05:41:13 am »
I but have a tight hug for you, keep it up. From your quite educated writing I can only say that your brain still works like a machine and there was a study, I can't remember exactly, so don't quote me on that - it said that the more educated the person the worse they feel they are cognitively impaired - so in other words the more educated you are the more you notice even slight decline. But you'll recover fully.
You are very lucky by the way, with a CD4 of 5, you had no major/systemic opportunistic infection that could have made the picture much worse - so that's a huge advantage straight at the beginning of your success saga.

Warm wishes from a slightly younger peer,
ZR
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Online virgo313

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #3 on: January 02, 2020, 08:07:48 am »
Hello Pete,

Welcome to this forum. I am quite like you in end 2016. Low CD4, in/out hospital, chemo, taking bactrim.

Bactrim give me issue, but I know I hv to bear with it. Same like you, VL down & CD4 very slowly increasing. Thatís the good part.

It took me 18 months before I can stop bactrim. Bear with the ďperiodĒ & give time for CD4 to reach higher then u can discontinue bactrim.

Support here is very helpful & glad you are posting ur story.
Take it easy and everything will be fine.
Tks
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline muchtolearn

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #4 on: January 02, 2020, 09:40:32 am »
Hi Pete,
Wishing you all the very best -- you've been through a hell of a lot but sounds like things are really improving. I was diagnosed at a higher CD4 (170), but the friend who gave me the gift of HIV was diagnosed in the single digits, hospitalized, very very sick, more like your situation. Within a year he was bouncing around with as much energy as ever, and plenthy of CD4 to spare. The movement in CD4 can be slow and a bit frustrating (mine has gone both forwards and backwards at times) but I'm sure you will get there.

Another thing to watch is CD4%, which can be a more stable and reliable indicator of improvement than total CD4. The US CDC says: travelers whose health status places them in one of the following groups are not considered significantly immunocompromised and should be prepared as any other traveler: HIV patients without severe immunosuppression (definition of severe immunosuppression: age-specific CD4+ T-lymphocyte percentages of <15%).
So once your CD4% is 15% or above, CDC is saying you wouldn't get any extra vaccines, etc, above the regular recommendations for anyone else.

On the failure of the health system to test routinely for HIV: I couldn't agree with you more. I also had undiagnosed symptoms for >1year. In the first round of tests for those symptoms, my family Dr and I both thought an HIV test was included -- but it wasn't. Without such a mistake I could have saved my body a year of uncontrolled HIV. Still, my focus now is on the future. You seem to be better than most at looking forwards, which is fantastic considering what you have been through. All strength to you for the upcoming year!

CD4 at diagnosis Aug 2018 = 170
VL at diagnosis Aug 2018: 201,000
Began treatment (Descovy + Tivicay) Aug 2018
Switch to Biktarvy: July 2019
Current labs (Sept 2019): CD4=430, 19%, VL=30

Online virgo313

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #5 on: January 02, 2020, 11:40:11 am »
Hello Pete,
Welcome to this forum. I am quite like you in end 2016.
Correction. It Shd read ďend 2015Ē.
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #6 on: January 02, 2020, 04:17:47 pm »
Thank you so much for all the responses. Was what I was hoping to hear. Iíll ask my doc about CD4%. Just to clarify I am off of bactrim completely, as it was causing severe liver enzyme reaction. Thatís why I was switched to dapsone and azithromycin. Without bactrim I have higher risk of toxoplasmosis however the doc wouldnít allow me to continue it after my bloodwork came back for liver enzymes.(above 50cd4 now so less risk of taxoplasmosis).

And as far as the comment about water and stuff, it may have been the combination of bacterial and fungal infections and I certainly was experiencing wasting(and I was trying to counter it by forcing myself to exercise without knowing I had HIV and protein deficiency, the opposite of what my body needed then). Point is, for a few weeks, especially a few days, I was hypersensitive to everything, from food intake to rest to physical activity, the slightest thing, like not eating for a little while or drinking water whatever Iíd spontaneously get worse congestion(in retrospect I should have gone to the E.R. or something I wanted to believe I was just having a bad bout of bronchitis or something, though it happened so gradually and I wasnít in my right mind due to illness and trying to push myself too hard out of denial- really didnít want to believe I had a serious illness). Point is, not something I experienced now or anything I experienced for an extended period of time, not some typical aids symtoms. Was just real sick and pushing myself too hard.

Anyway, all the input is very encouraging for me. When I first was diagnosed I had panic attacks a few times reading out dated information about mortality rates. Very motivated to get better. And very very fortunate to have serious secondary infections.

Yaíll rock thanks a bunch.

Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #7 on: January 02, 2020, 06:28:02 pm »
To not* have secondary infections (didnít see an edit button)

Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #8 on: January 02, 2020, 09:33:38 pm »
I but have a tight hug for you, keep it up. From your quite educated writing I can only say that your brain still works like a machine and there was a study, I can't remember exactly, so don't quote me on that - it said that the more educated the person the worse they feel they are cognitively impaired - so in other words the more educated you are the more you notice even slight decline. But you'll recover fully.
You are very lucky by the way, with a CD4 of 5, you had no major/systemic opportunistic infection that could have made the picture much worse - so that's a huge advantage straight at the beginning of your success saga.

Warm wishes from a slightly younger peer,
ZR

Thank you for the kind words. I would say a little more than a "slight decline", it was more like borderline dementia and borderline schizophrenia symptoms(and I was not using any mind altering substances). Though I was still "with it" enough to play it off to family and coworkers like nothing was wrong. I tested negative for cryptococcus(tested two months after diagnosis), though such symptoms dissipated quickly after beginning the antiretroviral/antibiotics/antifungal, so makes me wonder.

I didn't have any underlying mental illness. I think what I was experiencing was more like severe sleep deprivation symptoms. While I was getting sleep, between the HIV virus itself with depleted immune system, bacterial respiratory stuff, and thrush/candida, and still trying to maintain normal active daily life and act normal(and going through a lot of unrelated situational stress, not going to explain) I think my body just needed more rest, calories, and protein than what I could get. It was pure exhaustion and protein deficiency, not mental illness.

That is one reason I was hesitant to seek further medical care before I tested poz, because I assumed if I explained all of those symptoms, I'd get a psychiatric answer, and I didn't want pysch meds. I was sure there had to be something else wrong. Plus, when I had gone to the hospital way before, prior to diagnosis, hoping for answers, blood work, something, they just released me after ct scan and gave me ibuprofen. The other docs I went to(was just going to walk in clinics, I didn't have insurance or medicaid at the time) for respiratory and sinus infections would just give me antibiotics, albuterol, and nystin for thrush. I had convinced myself it wasn't HIV, so wasn't sure what to do. Eventually, ended up getting a HIV test to "rule it out" "just in case" or else I was just going to go to the E.R. because I couldn't cope anymore. Oddly, the HIV positive test was almost a relief. It was not the answer I wanted, but it was an answer.

I feel very mentally stable and am not feeling any of those type of cognitive symptoms anymore(I feel very drained sometimes, but not delirious), though still not 100% where I want to be. Happy with improvements thus far. Neurotransmitters rely on amino acids/proteins, so doing my best to get best nutrition possible, and have had good results thus far.

And yes, very very fortunate I didn't develop any other infection, I am sure it was just a matter of time at that point.

In retrospect I'm kicking myself for not testing sooner. But like I said, I had physicals which included blood work previously so was really convinced I was neg, so trying not to be too hard on myself. For years have had issues with energy and motivation. Even got blood work done for my liver years ago, thinking that was it. Have used all sorts of supplements for energy(had good response from modafinil years ago, has good studies for HIV+, though after diagnosis I asked my doc and she didn't recommend it because could interfere with biktarvi levels and my liver was already calling quits, will revisit that in longer run but for now more focused on rest than energy). Always just thought it was just the way my body was, or something, never guessed it was HIV. The year before diagnosis, it got really bad.

I really think they should be testing everyone for HIV - by default for any E.R. visit or surgery(also for safety of doctors and nurses), and by default for anyone complaining of symptoms like fatigue(and do blood work too, people could have anemia or other conditions) or any reoccuring sinus infections, thrush, anything. I was once prescribed an antibiotic ointment for a oddly healy scab(my s/o was worried it was cancer), I was likely already within AIDs threshold at that time - not even a suggestion to get tested. Knowing what I know now, it seems like it should have been obvious looking at my medical chart. Only once did a medical professional suggest I should get tested(the last nystatin refill, a month or month and half or so before diagnosis, part of the reason I got the test). Really wish that was something they had on hand at every doctor's office(I am sure it'd be cheap to mass produce the gum swab tests. Shit, they should even do it at the dentist for teeth cleanings, could just claim it's for the dentist's safety).

Btw, the day I got tested positive, I went to a walk in urgent care clinic(not the e.r., but a doctors office branch of the local hospital system, so figured they could do blood work). Was hoping they could get blood work started and get me started on meds. Nothing, they refunded my $300 walk in fee and just told me they didn't do HIV stuff there or blood testing. If they knew how low my cd4 count was and that I had pneumonia they probably would have suggested the E.R. Whatever. The next day I went to a free clinic. They do full appointments, full blood work, for only $25(and probably free if you really don't have $25, and no insurance or medicaid). The provided me a free month of biktarvi(pharmaceutical company sample bottle) and got me on bactrim and fluconazole day 1(only charged $2 for each script, even with no insurance), and helped me with paperwork for medicaid. Thank God they were there, I didn't have a primary care doctor and the paid walk in urgent care place didn't do that sort of thing, so if that clinic wasn't there, I'd have to have gone to e.r. then.

Anyway, the fever I had this past week is gone today. Happy. Feeling good today compared to previous weeks. Was sorta worried this was going to be as well as I'd get though, so happy to hear everyone's feedback, should be back to my old self again in due time.
« Last Edit: January 02, 2020, 09:35:48 pm by Pete_ »

Offline Jim Allen

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #9 on: January 03, 2020, 06:45:46 am »
Hiya

Quote
I really think they should be testing everyone for HIV - by default for any E.R. visit or surgery(also for safety of doctors and nurses), and by default for anyone complaining of symptoms like fatigue(and do blood work too, people could have anemia or other conditions) or any reoccuring sinus infections, thrush, anything. I was once prescribed an antibiotic ointment for a oddly healy scab(my s/o was worried it was cancer), I was likely already within AIDs threshold at that time - not even a suggestion to get tested. Knowing what I know now, it seems like it should have been obvious looking at my medical chart. Only once did a medical professional suggest I should get tested(the last nystatin refill, a month or month and half or so before diagnosis, part of the reason I got the test). Really wish that was something they had on hand at every doctor's office(I am sure it'd be cheap to mass produce the gum swab tests. Shit, they should even do it at the dentist for teeth cleanings, could just claim it's for the dentist's safety).

Quote
In retrospect I'm kicking myself for not testing sooner. But like I said, I had physicals which included blood work previously so was really convinced I was neg, so trying not to be too hard on myself.

Don't be too hard on yourself, what is done is done. You here now and the focus is staying on treatment and building back-up your health, as said it's a journey, not a race but you will get there.

I hear you on more frequent testing, although, claiming for their safety, I would disagree on to the point I would protest if such a policy was ever adopted. It just leads to more paranoia, fears, potential misunderstandings/stigma.

Healthcare providers follow universal precautions now called standard precautions so then there is no need to worry about what BBV's (Blood Born Viruses) a patient might or might not have, suggesting testing for their safety would be a huge step back in terms of safety and treatment of people, also unworkable given the number of infections they would need to test for and ultimately a step towards much darker times of this pandemic.

I understand that you are upset that you did not test sooner, a lesson many of us can equally share with those HIV negative people currently sexually active about the need to have routine screenings and I do agree testing should be more routinely offered when someone is in contact with healthcare providers regardless of why they are visiting their healthcare provider, but there is no need to spin a story around it.

Best, Jim



« Last Edit: January 03, 2020, 06:51:27 am by Jim Allen »
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Offline lightalltheway

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #10 on: January 03, 2020, 08:00:48 am »
Hello Pete,

Thank you for your post. I read it twice and I must tell you that I shed a tear, your lines brought to me a mix of feelings as I simply read my journey into yours. Can I give you a tight hug?

I am a survivor of a one digit CD4 count. I am a survivor of an AIDS diagnosis. I am a survivor of wasting syndrome. I am a survivor of cognitive disorder.

November 2016 is the date in which my whole life was something right before and completely something else just right after. It was when I came to know that I was HIV positive. Welcome to this forum, its a heaven of information and solidarity. Please always remember that you are not alone, you are a hero. A true one!

Reflecting on my experience, the beginning's weren't easy. It was a period of exposure of different sorts of knowledge. I remember very well that I spent hours reading and never get enough, I assume you are doing the same. If so, please always be mindful about the source and the date of the material of information.

Through out the discourse of time, your immune system needs its time to recover, thanks for ART medication. What you can do is to eat well, to rest, and to work closely with your medical team and/ or health provider. I used to write a list of questions to ask for my doctor in each appointment. Don't stress yourself, what counts is two things: your Viral Load and CD4 count tests. While you can completely control the first by being adherent to your medication, the latter needs its time to improve. Your immunity system was fighting the virus so hard for prolonged period of time and now after the battle is over, its time to improve, to flourish, to rest, and to recover. my advice is to give time some more time and not to stress about it.

Your CD4 count upon the initial test is called the nadir point, which is defined as the lowest count that your system reached before starting medication. Unfortunately, there is no trend of timeline prediction about how this count will develop overtime, but I can assure you it will. For me, it took a good two years until I reach the 200. Don't worry, you will reach there.

I would strongly advise on the importance of immunisation and that's my personal opinion. While some patients and doctors are against it, others are not. Personally, I felt more protected so I asked to be vaccinated against all the available shots such as the ( Inactivated ) influenza, Pneumococcal, Hep B, Hep A, Tetanus and Pertussis, and HPV vaccinations. I use a diary to follow up on when and what I took. These immunisations gave me sort of ease of mind especially that my immunity was tired for a prolonged period of time.

I resumed exercise after 4 months, and I go to the gym 6 days a week X 90 Mins a day since then. Beside looking and feeling good, sport is important for a healthy blood flow to the organs of the body, accompanied with good nutrition off course. Personally I consider a healthy diet and sport is a life style and a journey with or without HIV.

Another important element is Mental health and its correlation with your low CD4 count and diagnosis. There will come a time in which you will have negative self-talks, this is absolutely normal. Please be gentle with yourself, try always to look at the brighter side of any issue that your may wonder about such as the hard questions of why didn't I test earlier? why me? why I waited that long?. Its vital to remember that your thoughts are controllable and you are in charge. When you are tired with these sad ended questions always know that you are not alone, we care about you and there are people who passed through exactly the same, and they made it. I celebrated two digits and then three digits. You still have long life to celebrate.

My doctor once told me, your CD4 count is not important in isolation. What matters is our overall health. And there is a wonderful fact that my doctor also once added: HIV is only a tiny virus that likes extra attention, do not worry about it, your medication will do the job for you.

I hope you find these lines out of benefit. I did my very best in contextualising my experience. I look back at the last 4 years and I can confidently say, I was in control and now I am a better person thanks for HIV that enabled me to see myself, my life and the universe in a whole different perspective.

Please always remember that you're not alone, we are one community and here for you.

Prince.

Online virgo313

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #11 on: January 03, 2020, 10:53:46 am »
Hello Pete,
I think there is a good side after being positive. Before that I do not visit a Dr unless I have flu or fever. Now I am being ďmonitorĒ every 6 months. Eye check every year.

Initially, I think a lot. At hospital, I even called few people & thank them for helping me  ďjust in caseĒ... thoughts of why not getting tested early was not important as I know I cannot turn back to past. Whatís important is to ďsurviveĒ & thinking of my parents not wanting them to worry.

Over time when one get back to normal healthy level, we tend to forget the time we got the initial poz status. See I even forget the year I was diagnosed.

I see two type of people here. One is those with good mental and will from time to time update their progress with wonderful updates. Another are those who are struggling with their thinking of being poz and ďfadesĒ away and seldom post here. Right now, it will be hard to for you not to think a lot. I think we can only say to you not to be harsh to yourself like for not getting test early. The point now is that you know your status and is getting medical care. Also you are getting the latest medication. You will be fine.
Tks

RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline Marcanthony

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  • Posts: 48
Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #12 on: January 03, 2020, 03:08:40 pm »
Hi Pete.
Happy new year and thanks for sharing.

In 2018 I was diagnosed with late stage HIV, I didnít know I had it. My cd4
Was 6 and VL was 151 thousand. I had presented with PCP peunomia, and 3 different bacteria infections.
I had been sick for years, re occurring shingles, eye infections, mouth ulcers the size of £1 coins.
Itís been a tough journey as the drs initially struggled
To get to me to U Levels. It took 12 months, but Iím there now.

Iíve never felt better, and havenít felt this well for years. Iím a director for a company, I am married, I go to the gym and in the process of adoption.

You will get well. Beat advice I was given is to
Educate yourself & help the drs manage the condition. Ask questions, read up on things and also understand what youíre taking and why.

I Still take dapsone for PCP and my CD4 is now 180. I take 2 hiv meds a day and donít even think about it.

Offline Pirata

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #13 on: January 03, 2020, 05:23:32 pm »
I was diagnosed almost a year ago. I bacame undetectable after the first month of treatment. My CD4 count was 100, after 2 months they went up to 140 and I was very happy with the progress, I started making calculations and after 3 months they stayed the same 140. My next was after a month and the count was 150, my last visit was in November and the count was 110. So during this time I have learned that your count depends on many things, one of them as my doctor said is your genetics. It has been a slow process for me, but there are some people whose CD4 goes up faster. I also have learned that your VL is the most important indicator to take into account to see if your treatment is working. I was in bactrim for 9 months and during my last visit the doctor changed to Dapsone and he told me Dapsone has a lower impact in your CD4. I will going to my next exams in February and we will see how it goes. So CD4 improvement is different for each person.

Offline harleymc

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #14 on: January 03, 2020, 10:32:05 pm »
I started medication at a cd4 count of 10.
It took me 7 years to pass 200, but everyone is different, most people get there much faster.

Didn't take Bactrim because of previous Reactions .

No OIs after my KS cleared up.

Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #15 on: January 04, 2020, 12:10:24 am »
Hello Pete,

Thank you for your post. I read it twice and I must tell you that I shed a tear, your lines brought to me a mix of feelings as I simply read my journey into yours. Can I give you a tight hug?

I am a survivor of a one digit CD4 count. I am a survivor of an AIDS diagnosis. I am a survivor of wasting syndrome. I am a survivor of cognitive disorder.

November 2016 is the date in which my whole life was something right before and completely something else just right after. It was when I came to know that I was HIV positive. Welcome to this forum, its a heaven of information and solidarity. Please always remember that you are not alone, you are a hero. A true one!

Reflecting on my experience, the beginning's weren't easy. It was a period of exposure of different sorts of knowledge. I remember very well that I spent hours reading and never get enough, I assume you are doing the same. If so, please always be mindful about the source and the date of the material of information.

Through out the discourse of time, your immune system needs its time to recover, thanks for ART medication. What you can do is to eat well, to rest, and to work closely with your medical team and/ or health provider. I used to write a list of questions to ask for my doctor in each appointment. Don't stress yourself, what counts is two things: your Viral Load and CD4 count tests. While you can completely control the first by being adherent to your medication, the latter needs its time to improve. Your immunity system was fighting the virus so hard for prolonged period of time and now after the battle is over, its time to improve, to flourish, to rest, and to recover. my advice is to give time some more time and not to stress about it.

Your CD4 count upon the initial test is called the nadir point, which is defined as the lowest count that your system reached before starting medication. Unfortunately, there is no trend of timeline prediction about how this count will develop overtime, but I can assure you it will. For me, it took a good two years until I reach the 200. Don't worry, you will reach there.

I would strongly advise on the importance of immunisation and that's my personal opinion. While some patients and doctors are against it, others are not. Personally, I felt more protected so I asked to be vaccinated against all the available shots such as the ( Inactivated ) influenza, Pneumococcal, Hep B, Hep A, Tetanus and Pertussis, and HPV vaccinations. I use a diary to follow up on when and what I took. These immunisations gave me sort of ease of mind especially that my immunity was tired for a prolonged period of time.

I resumed exercise after 4 months, and I go to the gym 6 days a week X 90 Mins a day since then. Beside looking and feeling good, sport is important for a healthy blood flow to the organs of the body, accompanied with good nutrition off course. Personally I consider a healthy diet and sport is a life style and a journey with or without HIV.

Another important element is Mental health and its correlation with your low CD4 count and diagnosis. There will come a time in which you will have negative self-talks, this is absolutely normal. Please be gentle with yourself, try always to look at the brighter side of any issue that your may wonder about such as the hard questions of why didn't I test earlier? why me? why I waited that long?. Its vital to remember that your thoughts are controllable and you are in charge. When you are tired with these sad ended questions always know that you are not alone, we care about you and there are people who passed through exactly the same, and they made it. I celebrated two digits and then three digits. You still have long life to celebrate.

My doctor once told me, your CD4 count is not important in isolation. What matters is our overall health. And there is a wonderful fact that my doctor also once added: HIV is only a tiny virus that likes extra attention, do not worry about it, your medication will do the job for you.

I hope you find these lines out of benefit. I did my very best in contextualising my experience. I look back at the last 4 years and I can confidently say, I was in control and now I am a better person thanks for HIV that enabled me to see myself, my life and the universe in a whole different perspective.

Please always remember that you're not alone, we are one community and here for you.

Prince.

Your response is much appreciated. I hope too to come out of this stronger and learn from the experience.

Today I've been sort of depressed. I have no fever today, my viral count is already under control, I'm guessing my cd4 is still rising, but I just feel odd(physically, and mentally, but it's like not psychological it's like physical drain of energy). The fact the virus is mostly gone and I have no fever(while all good signs) makes me worried that feeling is just combination of damage already done and the meds. My body doesn't feel the same way it used to, and I don't know if it's the meds or just part of the recovery process. Is it normal? Is it just a matter of nutrition, rest, eventually exercise and higher cd4? It's weird, because while I felt sick and unwell before diagnosis, it was a different type of body feeling(and a lot of that time I'm sure I had low CD4 and didn't know, though I just felt different, so makes me wonder what is it I'm feeling now - is it a drain of energy from recovery, is it the meds, if so antibiotics or the antiretroviral, or is it damage done to my body, idk). The feeling I have now is different than what I've experienced before in my life before diagnosis, which weirds me out. I hope it's just part of the recovery process. I look forward to having my energy and vitality back. I know I have to work at it, and it's still early in treatment, but damn it, it's frustrating.

My logical mind is telling me to just be patient, it's still early, and focus on nutrition, and I'll get there. Motivated to stay in shape and be active. But damn tired of this blahhh feeling. Everyone saying a year to 18 months, while I wish it would happen faster, that makes me feel more optimistic, as a a year to 18 months is better than never(now, rather than a fear of dying like I had at first, which I've gotten past, now my fear is a fear of feeling like shit for the long term), and just can't shake the feeling today, physically and mentally. Definitely seems to be partially related to how much I eat, just seems difficult to get ahead. I'm sure I'll get through it, just wanted to vent. Thank you again for your response. Very much appreciated.

Offline Jim Allen

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #16 on: January 04, 2020, 12:22:48 am »
Quote
Is it normal?

Pete,

You have been through a rough time and have had a lot to digest, you are still healing and that takes a lot out of a person and, it can take a while to settle into things & treatment. Give it time.

Relax, Jim

BTW - Have you looked into any face to face peer support groups? I think meeting people face to face is very beneficial and maybe it's something that would provide you with additional support. 
« Last Edit: January 04, 2020, 12:27:57 am by Jim Allen »
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline lightalltheway

  • Member
  • Posts: 142
Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #17 on: January 04, 2020, 03:24:17 pm »
Your response is much appreciated. I hope too to come out of this stronger and learn from the experience.

Today I've been sort of depressed. I have no fever today, my viral count is already under control, I'm guessing my cd4 is still rising, but I just feel odd(physically, and mentally, but it's like not psychological it's like physical drain of energy). The fact the virus is mostly gone and I have no fever(while all good signs) makes me worried that feeling is just combination of damage already done and the meds. My body doesn't feel the same way it used to, and I don't know if it's the meds or just part of the recovery process. Is it normal? Is it just a matter of nutrition, rest, eventually exercise and higher cd4? It's weird, because while I felt sick and unwell before diagnosis, it was a different type of body feeling(and a lot of that time I'm sure I had low CD4 and didn't know, though I just felt different, so makes me wonder what is it I'm feeling now - is it a drain of energy from recovery, is it the meds, if so antibiotics or the antiretroviral, or is it damage done to my body, idk). The feeling I have now is different than what I've experienced before in my life before diagnosis, which weirds me out. I hope it's just part of the recovery process. I look forward to having my energy and vitality back. I know I have to work at it, and it's still early in treatment, but damn it, it's frustrating.

My logical mind is telling me to just be patient, it's still early, and focus on nutrition, and I'll get there. Motivated to stay in shape and be active. But damn tired of this blahhh feeling. Everyone saying a year to 18 months, while I wish it would happen faster, that makes me feel more optimistic, as a a year to 18 months is better than never(now, rather than a fear of dying like I had at first, which I've gotten past, now my fear is a fear of feeling like shit for the long term), and just can't shake the feeling today, physically and mentally. Definitely seems to be partially related to how much I eat, just seems difficult to get ahead. I'm sure I'll get through it, just wanted to vent. Thank you again for your response. Very much appreciated.


Give time some more time, rest assured you will be fine. This strange mix of feelings and emotions are normal. As Jim stated, you passed through a lot and it needs time to adjust.

I would strongly advise you to get on with your life, do what makes you happy. Try to limit your self monitoring about how are you feeling by analysing it, but rather live the actual feeling and let it be and let it go.

When I was diagnosed, I used to enjoy reading so much ( I still do ), try to occupy yourself by doing what you feel like doing. and during a day where you feel tired, just stay in and do nothing. Please, be gentle on yourself and remember, once again, youre not alone.

Prince

Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #18 on: January 05, 2020, 06:37:21 pm »
Just an update. First off, this is not medical advice, obviously. 

I tried taking modafinil today(well actually, armodafinil). 

I am convinced my fatigue unwell feeling is a lack of energy more related to medications rather than cd4 or any other factor. 
My doctor advised me not to take modafinil, she said it could reduce biktarvi levels.
Modafinil is processed by the liver, so I understand that concern. However, from the studies I've read (for example: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2892004/ ) none of them showed serious inteeration. The mention study, the modafinil group actually haw lower viral count at end of study. My doc may have been concerned due to severe liver reaction with liver I had to bactrim.

Modafinil is used for improving energy and cognition. HIV/ARVs are associated with cognitive impairment for some, and lethargy. Modafinil and armodafinil is fairly cheap on gray markets. Causes no jitteriness, no speedy feeling, just more wakefulness, clear thinking, and motivation(and increased REM sleep). No significant withdrawal. Doesn't use dopamine system like amphetamines (including adderal etc, I have never liked those type of meds).

I've seen a lot of people saying they don't feel like themselves on the ARVs. Yeah, I feel the same way. However, I don't want to stop taking my ARV, I realize keeping my viral count and cd4 recovery is most important at this stage, and skipping doses or taking a break from arvs can cause a reduced response when restarted(and I hope to remain undetectable, and never want to feel the way I did when I was diagnosed - while I don't feel 100% now, I also don't feel like I'm fucking dying, which is how I felt prior diagnosis and first weeks of treatment).
I have experience with both modafinil and armodafinil, with very good results in previous years(years when I was HIV+, but unaware).

While I understand why my doc advised against it, I am tired of feeling blahhh, physically fatigued, and motivationally suppressed. It's a physical feeling I feel throughout my body and brain and I can't stand it. I realize I'm only three months into treatment, so I still need more time to get acclimated, and may feel different as my health improves in regards to cd4 and stuff, but I honestly feel like I will be able to get myself back in better shape, and stay focused, and keep up with getting my daily life back on track and nutrition goals etc if I can get rid of the brain fog and have more energy. If I don't feel like getting out of bed, I'm not going to stay active, eat as often, and work on stuff I need to do to be successful in my normal life - and most of all, I just don't want to feel like shit all the time. I think even if it does have slight effect of metabolizing my arv, I think I'll be better motivated to keep eating, stay with it cognitively and motivationally, and get active again than if I don't take it.

Again, this is not advice to anyone, and I am going against my doctors advice on this one.

Day one on armodafinil, so far, helped a lot. Doesn't offset the unpleasant feeling I had completely, but sure did provide so improvement, and lifted much of the brain fog.

I choose armodafinil instead of of modafinil, as armodafinil as armodafinil is the enantiomer of modafinil, and requires lower dose is it is more bioavailable. Some HIV- people prefer modafinil as doesn't last as long and is slightly milder. However, I figure this would be better on the liver(150mg armodafinil vs 200 mg for modafinil for same dose), and much of the affects are suppressed by the lethargic feeling anyway.

On the contrary, "adrafinil" (no prescription sold in nootropics shops online) is weakers and requires much more metabolizing-  I highly recommend avoiding adrafinil(even hiv- people) - not to be confused with armodafinil(nuvigil). 
 
It may have been smarter for me to wait to start this, but I need to continue on with my life and I have stuff I need to do. My issue really isn't emotional and physiological right now, it's a physical feeling that is suppressing me.

I my bloodwork next month isn't good, I'll consider stopping, but so far none of my research indicates too much of an interaction.

I've had good initial results with biktarvi for viral count and have had good cd4 recovery so far, so I don't intend on switching meds, though will revisit this in a year or so if my cd4s are back at safer levels. I've read on here, some people has less side affects by switching arvs, seems everyone is different. But if it's working for viral load, I'm not going to risk switching arvs in this stage of treatment. I am just looking for ways to offset symptoms at this stage of treatment, and currently I think my symptoms are related to the ARV itself. 
 
God willing there will be a complete cure within our lifetimes and we can safely get off the meds completely.

By the way, also not medical advices, I've read some studies about HIV suppressing human growth hormone. Considering experimenting with MK 677 to increase human growth hormone. Human growth hormone can increase bone density, which plays an important role for CD4 and CD8 production. MK 677 has been studied both for treating aids wasting syndrome( https://www.smr.jsexmed.org/article/S2050-0521(17)30032-X/pdf ), as well as helping with general cognitive impairment
( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764914/ ). It's a gray area and something my doctor definitely wouldn't recommend. However, right now, I am really really really determined to get my life back, and I going to test with low dose at my own risk.

There is a company that provides HGH for aids patients for $36k a year ( https://www.thebodypro.com/article/many-faces-human-growth-hormone ) instead I'm buying a few month supply of MK 677 (no injections needed) for like $60. If I have side effects I'll stop, will cycle 2-3mg a day 5 days a week(body builders take up to 25mg a day).
 
I realize there can be risks, I am not trying to convince anyone to make similar choices, nor am I looking for anyone talk me out of it, I'm just sharing what I'm don't. My life, my body, my choices. 
 
Emotionally stable and feeling optimistic, just trying to get back ahead physically to feel good and go on with my life. 
 
In the long run, I hope to put on weight so I can exercise. I think having more body mass, and good nutrition, will help me get past the symptoms that I am feeling now.

Offline ZachR

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #19 on: January 05, 2020, 08:02:44 pm »
Been there, done that. I had a similar bumpy road with ARVs. We're all different, and some react really severely even to the seemingly lightest drugs. I understand you doing your best to stay with Biktarvy, so decided I, because it is believed the least toxic and highly effective. Fatigue and brain fog are really a million times worse than having a clear body ache or pain, at least then you know and you can tell you doctor - look, this hurts, while explaining fatigue and brain fog was always difficult and most of the time I felt no one even understood me. Someone who has never had this sort of fatigue would confuse it with the normal feeling of tiredness. Keep fighting. Can't say much.
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #20 on: January 05, 2020, 09:39:55 pm »
Been there, done that. I had a similar bumpy road with ARVs. We're all different, and some react really severely even to the seemingly lightest drugs. I understand you doing your best to stay with Biktarvy, so decided I, because it is believed the least toxic and highly effective. Fatigue and brain fog are really a million times worse than having a clear body ache or pain, at least then you know and you can tell you doctor - look, this hurts, while explaining fatigue and brain fog was always difficult and most of the time I felt no one even understood me. Someone who has never had this sort of fatigue would confuse it with the normal feeling of tiredness. Keep fighting. Can't say much.

"Someone who has never had this sort of fatigue would confuse it with the normal feeling of tiredness." Amen. Yeah, it's impossible to explain. It's like, no, I'm not like "sleepy tired" and it's not like physical exhaustion felt by a healthy person after exercise. Those types of fatigue are pleasant, even euphoric, compared to whatever the fuck I've been feeling. Nor is it like normal depression or physiological, as in it's not something I need ssris for or therapy for. You know exactly what I'm saying. It's impossible to explain to someone who hasn't experienced it. While not a complete cure to that feeling, the modafinil helped a lot today, though the feeling is still there. I am released because I think I can make this manageable. I think by bulking up, putting on some extra weight, staying active, and being mindful of nutrition, and packing on extra protein, I can shake that feeling. Makes me feel better that others understand. Despite the side effects, I am really grateful that I have the meds, as I know I'd probably have a much worse time coping with whatever they had a decade, twenty years ago, or thirty years ago. Salute to those who've survived through those times, as well as those who didn't(shit, how hard it was for me the first weeks, I don't think I would have done so well with the old meds, probably would have been in the "those who didn't" group if I lived back then). Hopefully in another decade, we'll see more advancements.

Offline harleymc

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #21 on: January 06, 2020, 03:31:50 am »
I simply don't U derstand this thread. Maybe it makes sense to the newly diagnosed but with more than three decades under my belt it seems like a alien language.

Offline Loa111

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #22 on: January 06, 2020, 09:47:36 am »
Sorry to hear of your DX. Things get better with time, and you will gain strength & recover.

I came in with an advanced DX CD4 22 in May '18. Sick for about 9 months before, every cold & cough, getting skinny & gaunt looking, runs all the time, thrush, then PCP which they thought was bad asthma for months.

I was suprised by the DX because I had a quick test 4 years before DX which was Neg. Test 6 years before DX which was Neg, & 7 years before also neg. My ID Doc said I could have been infected for up to 10 years and the tests were false negatives. I was living in Asia back then.  If tests were correct, then I get infected around 4years ago test, and must be a fast progressor. I'm off topic so...

Took me the rest of '18 to recover. I got UD within several weeks. Still got a bit skinny in months after DX before body started to recover. I had a med change, as also took 3 types of antibiotic to find one that suited me as I had Liver test high readings. So my Jan '19 I was ready to go back to the gym etc.

Point is allow yourself ample time to recover, and take several months resting & taking it easy. I went back to the gym too early a few months after DX but got exhausted fast so I knew to wait a while. I began to eat like a horse which was good, and I put the weight back on & the skinny look went.

As of today, I look well, am very fit for my age & active. I pop my pills in the morning and that is it really nothing much as change. I've had a mindset shift as before DX I was uptight about work & money & tense if things were not going my way.. DX woke up, I try to enjoy the moment, be grateful, and have an acceptance...if things work wise are meant to be, they will, and if not another door will open. So mentally, even though the Dx was a big stress, and I was probably depressed because of it...I am actually more relaxed today, more spiritual, and more easy going! That's good, right? :)

Good news for you, is all is bright going forward for you. Just take your pill n keep posting here.

Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #23 on: January 06, 2020, 06:08:52 pm »
Sorry to hear of your DX. Things get better with time, and you will gain strength & recover.

I came in with an advanced DX CD4 22 in May '18. Sick for about 9 months before, every cold & cough, getting skinny & gaunt looking, runs all the time, thrush, then PCP which they thought was bad asthma for months.

I was suprised by the DX because I had a quick test 4 years before DX which was Neg. Test 6 years before DX which was Neg, & 7 years before also neg. My ID Doc said I could have been infected for up to 10 years and the tests were false negatives. I was living in Asia back then.  If tests were correct, then I get infected around 4years ago test, and must be a fast progressor. I'm off topic so...

Took me the rest of '18 to recover. I got UD within several weeks. Still got a bit skinny in months after DX before body started to recover. I had a med change, as also took 3 types of antibiotic to find one that suited me as I had Liver test high readings. So my Jan '19 I was ready to go back to the gym etc.

Point is allow yourself ample time to recover, and take several months resting & taking it easy. I went back to the gym too early a few months after DX but got exhausted fast so I knew to wait a while. I began to eat like a horse which was good, and I put the weight back on & the skinny look went.

As of today, I look well, am very fit for my age & active. I pop my pills in the morning and that is it really nothing much as change. I've had a mindset shift as before DX I was uptight about work & money & tense if things were not going my way.. DX woke up, I try to enjoy the moment, be grateful, and have an acceptance...if things work wise are meant to be, they will, and if not another door will open. So mentally, even though the Dx was a big stress, and I was probably depressed because of it...I am actually more relaxed today, more spiritual, and more easy going! That's good, right? :)

Good news for you, is all is bright going forward for you. Just take your pill n keep posting here.

Thanks, sounds good to me. Glad things worked out for you. I don't know if I am just overly sensitive to the medications, or maybe just need more time. Perhaps some of the symptoms I'm feeling now are also due to the antibiotic? Once/if back over 200, do people stop taking the antibiotic? I guess a question for my doc.


Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #24 on: January 06, 2020, 07:06:45 pm »
I simply don't U derstand this thread. Maybe it makes sense to the newly diagnosed but with more than three decades under my belt it seems like a alien language.

Not sure what parts specifically you are referring to. I hope what you mean is you gotten past all that stuff and got in a good grove in your life, so what I'm saying you just don't relate to. I hope you don't mean you just felt like shit for thirty years straight, as that's what I'm worried about for the next 30 years of my life, if so, well salute to you and your strength.

To reiterate and summarize, and to make my perspective more relatable(and mostly just for me, to write this shit down so I stop thinking about it constantly):

I had a late diagnosis, and was experiencing dementia like symptoms and had bad respiratory infection. First month on meds was horrible, debilitating lactic acidosis and liver toxicity from bactrim(when my blood work came back, doc called me on a sunday and told me to stop taking the bactrim immediately, weekend before I was hospitalized), had hellish full body rash/hives for a week. I felt like the scene in the movie "princess bride" where homeboy went through torture machine that took years off his life and the village doc was like "no, he's only mostly dead". Like, even speaking a few sentences and basic human interaction was exhausting, I was in real bad shape. End of first month on treatment, was hospitalized for near 107 fever, near brain damage levels, was extremely frail, felt barely alive. May have also had bad reaction to metoclopramide(had chills/shivering, despite fever), cd4 was 21 at that hospital visit. Had protein deficiency. Now it's just over a month later from then, and just got over a less severe bout of fever. Still feel like shit, though improving.

Wasn't sure how much was of my symptoms was due to low cd4, or just reactions to acclimating medications, liver issue, or just healing. Had some bad allergic reactions, skin and respiratory.

My body has been through a lot recently, and I just wasn't sure what making a "full recovery" will mean for me, and if/how long it will be till I feel normal again. My medicaid caseworker was like "you'll be fine by Christmas" when I was first diagnosed. I'm alive and have no secondary infections, but I am not fine by any means relative to normal health.

I contracted HIV as a teen from a stranger. I've only had a few acquaintances(and I mean acquaintances, not partners or close friends) that have HIV(or at least ones who mentioned it), so I really was oblivious about the disease prior to my diagnosis, and don't have anyone I know well to talk to about it(I am not a very social person). And while I have good support from my gf(btw, fortunately, she tested multiple times, HIV-) and family, I don't have anyone close to me that has HIV and has been through this experience. My only advice outside of this forum has been from medical professionals. Feeling much better than I was prior to diagnosis, and the first two months of treatment, but damn sure aint where I want to be.

From feedback, seems like I just need to be patient, and with time will improve.

My fear is feeling this horrible lethargic, brain fog, weak, blahh feeling etc for the rest of my life - even if not getting any life threatening secondary infections.

I'm optimistic I'll get better, and will be able to get back to where I want to be health wise.

However, seems from others feedback, and other threads I've read, some people do have long term issues with meds, while others experience little to no side effects.

The virus is damn near gone(I know it doesn't go away completely, but as close as it could get to gone), below 20 vl now, compared to 820,000 vl at start, so I know the virus itself is not causing my current symptoms- as I've live probably about a decade with the virus at higher levels.

So am just trying to understand what it is that I am experiencing now, and what I can realistically expect in the future.

I've lived my adult life unknowingly HIV+, and I know the type of sick I was initially during the few years right after I likely contracted it HIV, and how I felt the years following that stage(not too bad during the stage where CD4 levels were still presumably in a decent range, and while viral levels dropped from initial spike after infection, before increasing again in the aids stage, but then again, I have no idea how I would have felt if I didn't have the virus, I thought my low energy was from laziness, and attributed other symptoms to allergies, or mold, or bad sinuses, or whatever). And I know the type of sick I was was when the vl levels began rising and CD4 plummeting this past two years. That type of sick I never want to feel again. Though I'd be more than happy to feel as well as I did in the stage between contraction, after initial illness and viral spike, prior to the aids stage, as that was still better than how I feel now. Though maybe I never will, as I also still had youthful energy of early 20s during that stage, despite the untreated hiv.

All I know, is how I feel now, is different than how I felt during any of those stages prior to diagnosis. I have felt all sorts of different type of sick this past year, and in ways I hadn't experienced previously. Prior to medicine, was much worse in certain ways, when I really started crashing. First month of treatment I felt better cognitively in certain ways, but even worse physically at first. Since then, my health is improving, but I do not feel like myself still, and I feel different(not necessarily worse, but different, than I ever felt prior). While I much prefer how I feel now compared to how I felt prior to treatment, and how I felt right after starting treatment, what I am saying is still do not like how I feel right now.

I am just trying to understand the recovery process, try to understand what causes the symptoms, and the best route to mitigate the symptoms. I want to know what expectations are realistic for my future quality of life. I am young and have a lot I want to accomplish, and the past three months, and year prior, was debilitating physically and mentally compared to my normal quality of life. Most of all, I just want to feel normal again. I still have a dark cloud of fatigue constantly looming over me, a very odd fatigue, that is almost painful in nature(though, not like muscle soreness or headache, like a very unpleasant feeling that is suppressing my physical, mental, and emotional energy).

As someone like yourself who has survived three decades, perhaps you could shed some light on how life has been for you since diagnosis. Though I am sure our journeys have been and will be different due to changes in medicine.

I am only three months into this, and to say the least, it has been a very traumatic, confusing, and disorienting process. I am in my mid twenties and I've never felt anywhere near as fragile and vulnerable as I have this past year. I grew up learning that people with aids just die, so my starting point for understanding my diagnosis was not exactly informed and up to date.

From what I've gathered, I'll be ok, and a lot of the shittyness I feel now, I should be able to get through this year. This is just all new to me and I am having difficulty adjusting, I don't want to have aids, I want to be healthy and full of energy again. I think my worry is premature and I just need more time heal.

Anyway, it's therapeutic for me to express my thoughts and share my experience here. Writing things down helps me from dwelling too much on these topics. I am about well enough to get on with my life as normal now, at least for most part, although I don't feel as well as I'd like to be feeling yet. So, instead of dwelling and obsessing over this diagnosis, and the what ifs, I guess I need to just focus on my next steps, in terms of personal life, career, daily life, etc. 

Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #25 on: January 08, 2020, 06:34:12 pm »
A few updates on how I'm doing.

I got my MK677 in the mail today, took about 15mg. Labeled "not for human consumption" and is not approved by the FDA, however so far no side affects. Unlike other similar drugs, MK677 has 0 affects on cortisol, heightened cortisol reduces tcell production. Unlike pure HGH, no injections needed. #1 "side effect" is increased appetite. MK677 mimics the ghrelin hormone "It is termed the 'hunger hormone' because it stimulates appetite, increases food intake and promotes fat storage."

If MK677 is effective for appetite stimulation, the FDA should fast track approval, and stop prescribing metoclopramide to AIDs patients. Metoclopramide works, and is better than nothing if you are sick an have no appetite, but the side effects were difficult for me. I am pretty sure the shivers and chills I had prior to hospitalization were partially caused by the metoclopramide. The combo of ondansetron(for nausea) and metoclopramide contributed to a lot of my symptoms. I definitely needed the ondansetron, as I couldn't take my meds at first without throwing up(couldn't even hold down water (I think it was the bactrim causing the nausea) the ondansetron worked like a charm, but not without side affects. I from lactic acid from biktarvi, to chills from metoclopramide, to muscle twitching from ondansetron, to liver toxicity from bactrim(and horrible full body rashes), I've experienced side effects from almost all the meds - and while the meds were necessary - if some could be replaced with less harsh alternatives(like mk677 for appetite), then I think it's important that this happens. The combo of low cd4 and protein deficiency made me insanely frail and vulnerable to side effects, another reason early detection is so important. First month of treatment I felt like I was 150 years old or some shit.

The other reason I am taking mk677 is because it increases HGH, with no injections needed. HIV suppressive HGH, and HGH therapy has been shown to help CD4 recovery for AIDs patience. MK677 increase bone density and bone turnover (bone regeneration), up to 30% in elderly osteoporosis patients. Considering the only people who have been cured of HIV are those who got bone marrow transplants, I think this substance should be good. MK677 has been shown to treat wasting syndromes, frailty in the elderly, and seems all around good for what I need. It has 0 affect on cortisol levels, which is perfect, since higher cortisol correlates to reduced tcell production. Since it increases bone density, should be good for blood cell production. Helps improve muscle mass and appetite, so should help me get through this frail stage and reduce my fatique. Also, in eldery patients, increased REM sleep by up to 50%.

I stopped taking the armodafinil today and yesterday. It worked well to reduce symptoms, but I am worried about my liver. My s/o mentioned my skin looked yellow yesterday. I had severe liver reaction to bactrim, and ARVs are hard on the liver, and I can't stop taking my biktarvi, so I need to just avoid anything else that requires liver metabolization. Two nights ago I threw up after taking a moderate amount of supplements, so I'm chilling out and reducing supplements. Will keep taking the mk677, and basics like multivitamin and spirulina, but will avoid all else, as I am worried about my liver health. I felt like shit yesterday morning after throwing up the night before, so I took my metoclopramide(appetite) and ondansetron(nausea) yesterday - which caused me to feel more lethargic. Trying to avoid taking those if I can. Feeling better today, had good appetite. Fever has stayed away, minor chest congestion, nothing serious.

All in all, doing wayyyy better than I was two months ago, very optimistic about the future. Still taking it easy.

Offline ZachR

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #26 on: January 09, 2020, 03:30:17 am »
Hi Pete, great to hear everything is moving in the right direction. I only want to remibd you of a few things regarding research and self-experiment.

1. Be careful about how you read and interpret research on new molecules - especially ones that are endogenous hormone or protein mimetics. Research is almost always inconclusive - aim for large meta-analyses as they are moreclikely to draw a firmer conclusion.
2. Interaction information is lacking for most nootropics and herbs, often even their pharmacokinetics are unclear, so you can't even know which enzymatic pathways are involved.
3. Try to work on a perfect diet and mental calmness as a foundation of your well-being then add moderate exercise and tonics and other 'embellishment' to it.
4. Once again, be cautious of what and when you take to minimise possible interactions with your meds and burdening your excretory system.

Best,
ZR
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #27 on: January 11, 2020, 12:11:29 am »
Hi Pete, great to hear everything is moving in the right direction. I only want to remibd you of a few things regarding research and self-experiment.

1. Be careful about how you read and interpret research on new molecules - especially ones that are endogenous hormone or protein mimetics. Research is almost always inconclusive - aim for large meta-analyses as they are moreclikely to draw a firmer conclusion.
2. Interaction information is lacking for most nootropics and herbs, often even their pharmacokinetics are unclear, so you can't even know which enzymatic pathways are involved.
3. Try to work on a perfect diet and mental calmness as a foundation of your well-being then add moderate exercise and tonics and other 'embellishment' to it.
4. Once again, be cautious of what and when you take to minimise possible interactions with your meds and burdening your excretory system.

Best,
ZR

Thanks for the advice.

I will use caution. So far no adverse side affects, and seems to help stimulate appetite cravings - while other medications speed up digestion process. So not necessarily a replacement for other meds, I will continue as long as no adverse reactions. I have had noticeable side affects from almost all the meds Iíve taken so far, so far with this one, no noticeable negative reactions, and have gotten good sleep. Not looking to experiment with anything else. Avoiding most all other supplements right now as with antibiotics and ARV I need to mindful of my liver and stomach.

On another note, sex life has died after diagnosis. I am guessing many people may have similar issues. Being sick and frail and what not made it so sex hasnít been much of priority to me, more concerned about making a recovery, however itís an issue none the less. I contracted HIV far before I met my current partner. She didnít contract HIV from me and is still HIV- and is not resentful that I exposed her to it because I genuinely was unaware I had HIV and was under the impression I had been tested for it in previous blood work before I met her. I have also never had any STDs, no herpes, nothing else. Neither her nor I have had any other sexual partners since we met each other a few years ago. Point is, infidelity is not a factor, nor is resentment for risk of transmitting HIV to her.

Prior to diagnosis I had broken up with her because of disagreements, though overall we have had a good relationship. She forgave me for the break up and took me back and helped take care of me since diagnosis, has driven me to my doctors appointments, helped out with everything around the house etc, and has been caring in those regards. This much I really appreciate, as I was very much in need of assistance in the first month, and I understand for many HIV is a deal breaker. She also felt bad as she was unaware of how sick I was prior to diagnosis, and how unwell I was overall, so she sort of felt bad about being harsh towards me prior to the break up, and was also genuinely worried about me because I was so sick and she cares a lot about me.

We had sex a few times since diagnosis, primarily oral, though has fizzled out. She is aware that at undetectable levels I am not transmittable, and is aware we can use a condom, and knows that itís not transmittable through oral. Despite that, she says she never wants to have sex again, and says she now associates sex with my diagnosis, and has destroyed her sexual desire. I am a young guy, sheís just over ten years older than me. Sheís had more previous relationships than I have had. I only had two serious relations prior to her, one was short term, and the other was not a good relationship. Point being, even if sheís ready fo retire from having a sex life, Iím not, and want to have a good sex life through my 30s(in late 20s now). Her an I had a spectacular first year of our relationship, with very good sex life. So it seems odd to me sheís given up on that, and I find it hard to believe she is finished with sex for ever.

I understand that I canít change how she feels, and that this process has been traumatic for her as well, however I feel lost in that regard to our relationship. Home life is good, we arenít arguing, thereís peace, and we certainly do love each other. However, I canít help but think that she thinks of me differently due to my diagnosis. I trust her that she isnít seeing anyone else, and doesnít have desires for anyone else, but while there is still some levels of romance, part of me feels friend zoned - and being denied certainly does not help with my own insecurities.

I am grateful sheís still there for me, I am sure many others with HIV have far worse reactions from partners or even family. So I canít complain in comparison to those situations. I am grateful to have no judgment family and to still be in a relationship. But being told that she doesnít desire sex anymore because I have HIV is not making this any easier for me, and is confusing for how I think about the relationship and the long term outlook. She says she still finds me attractive and loves me, but without a physical element itís not quite the same. She thinks all I want is sex and she feels ďobjectifiedĒ by my advancements, which is hurtful to me as I do not view her that way, and just want our normal relationship back(previously advancements were welcomed, so being denied is one thing, but being told my behavior which was normal during other periods of our relationship is ďobjectifyingĒ is insulting, as I have never been a womanizer nor want an only sexual relationship) and I have not been pushy and have been very patient in regards to the relationship and sex. I am young, still have a sex drive, and donít want to give up on either this relationship or having a healthy sex life. Nor do I want to seek sex elsewhere, I am not seeking new partners or a new relationship. I hope with time she gets over it and we regain intimacy.

Itís an awkward situation. Itís like, no,I donít just want sex out of our relationship, but yes, I want to have sex still, and I still want to feel sexually desired. I am sure HIV can be a deal breaker for relationships in the gay community, however itís certainly a different type of challenge and stigma for straight relationships. I am sure thereís plenty of dudes out there who would be accepting and have sexual desire, that just isnít my preference. And while I havenít given up on this relationship, the prospect of dating as HIV+ in straight community is daunting. No offense to gay guys, but I donít want women to look at me or treat me as a gay guy because of my diagnosis, nor do I want them to think Iím a heroine addict, nor do I want to be dishonest, I am public about my HIV+ status though I donít feel obligated to explain how I may have contracted it to anyone(besides medical professionals, I keep that to myself, I donít care what others speculate, if they judge they donít have to be a part of my life). As far as peers, career, or strangers, I couldnít care less about HIV stigma, but as far as intimate relationship - this is a concern.

Ideally, I just want my happy, healthy, and sexually active relationship back with my girlfriend. And while sheís seems like she wants to stay with me for the long term, I canít help but feeling rejected. She is not a man so might not understand exactly how I feel, and I donít want her to think my desire for sex is ďobjectifyingĒ her, but while sex is not the only aspect of a relationship/romance/attraction/intimacy - it is an aspect of of our relationship I am used to, enjoyable, builds trust and confidence, and  Iíd be a lot happier in this relationship if we had a healthy sex life  again. It damn sure would have been nice if she had been giving me lovin these past months when I was well enough, in terms of mood and dealing with the diagnosis. Would help me feel good emotionally and physically  when I feel shitty otherwise, and would help me feel more confident about our relationship. But I respect her choice as a person, and respect that is her choice to make. Though that choice does have an impact on me in regards to how I feel about the relationship. In the long run, I will have to make my own choice, and I hope we can maintain mutual respect regardless of where our paths take us.

Idk. Iíll be patient and focus on my physical recovery. Will see how the relationship goes in other aspects. However I also donít think I should feel selfish for wanting a relationship with sex. There are some aspects to her reaction I think some guys would consider a red flag, not going to go into too much detail,  however I will trust her that there is not anything else going on(if I were to be insecure, I could obsess over  whether she is interested in someone else, what if money is an aspect, and if she doesnít want sex because she is not committed to me, rather than HIV phobia?) However, I am not going to think that way, I do not want to think of her that way or as that type of person, and I donít want to make assumptions and give up on a good relationship). Also, if she does have HIV phobia, I canít really blame her, because she witnessed me damn near die. I just hope she gets past it, because it sure doesnít sit well with me, and adds insult to injury. I am sure many diagnosed HIV+ fear how it could limit potential for relationships and sex life, so that reaction definitely solidified that fear for me.

So Iíll try not to overthink it, and not judge her by her reaction, and just try to listen to my heart. If it works, it works. Great. Right now, I am happy to be alive and recovering, and Iíll focus on that. I do not have the energy to emotionally stress out about what ifs. And Iím not going to stress her on the issue either, because sheís been by my side helping me through this and helped take care of me through the worst of it.

Iíll give it time, and not pressure her or stress the issue, and if we are good for each other and get through this together and stay together, great. If we arenít, time will tell, but Iíll try not to think negatively or be judgmental of her, and just be grateful for support Iíve been given and that I am recovering. If I donít have my health, everything else doesnít matter so much anyway, so Iíll just focus on getting healthy and getting my life back on track in terms of my career(fortunately I have done online business for most of my life, and while the fatigue and being sick has been a major set back, I can continue with my career in current state of health) and take everything else - including love life - one day at a time.

Mainly just wanted to write that down, and get it out of my mind. If anyone has feedback, or has a similar experience to share, or a word of advice, awesome, if not, no worries, writing of therapeutic enough for me.

 I need to rest. No fever, no current problems with health specifically, still having major issue with fatigue and feeling unwell. Iíll try to forget my worries and sleep. On the bright side, when Iím feeling shitty, I think about how much more shitty I felt two weeks ago, or a month ago, and realize how much progress Iíve made and that I am getting better. But damn it, this aint no fun. Sure Iíll be stronger for living through it, but dang it, no bueno.

 Again, anyone reading this forum worried about getting tested, get tested, donít worry about a positive result, the sooner you know the better, the anxiety shouldnít be about getting tested or having a positive result, the anxiety should be putting off getting tested. The sooner you get tested, even if it is positive, the easier the journey will be, donít stress it.

Offline Jim Allen

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #28 on: January 11, 2020, 06:38:11 am »
Hi Pete,

Glad to hear you are doing reasonably well and that your partner is a source of support for you.

Quote
I understand that I canít change how she feels, and that this process has been traumatic for her as well, however I feel lost in that regard to our relationship. Home life is good, we arenít arguing, thereís peace, and we certainly do love each other. However, I canít help but think that she thinks of me differently due to my diagnosis. I trust her that she isnít seeing anyone else, and doesnít have desires for anyone else, but while there is still some levels of romance, part of me feels friend zoned - and being denied certainly does not help with my own insecurities.

Quote
she says she never wants to have sex again, and says she now associates sex with my diagnosis

Early days, a lot to digest for both of you. Give her the time she needs and see how things settle in. Perhaps some couples therapy might help at some stage although, ultimately if she is no longer sexually interested in you or willing to sexually engage with you and it's a deal-breaker in the relationship maybe you will end up going your separate ways.

Quote
the prospect of dating as HIV+ in straight community is daunting. No offense to gay guys, but I donít want women to look at me or treat me as a gay guy because of my diagnosis, nor do I want them to think Iím a heroine addict, nor do I want to be dishonest

I think most newly diagnosed find the idea of dating daunting. I would not recommend anyone starts dating until they are ready, but if and when you are all I can say is it's never been an issue for me in the straight world. Asides from the odd weirdo I've come across things have been fine in terms of dating and I think it has more to do with one's own mentality regarding HIV than anything else.

Quote
She is aware that at undetectable levels I am not transmittable, and is aware we can use a condom, and knows that itís not transmittable through oral.

I should mention that the consensus statement and evidence is that the risk of sexually transmitting HIV from a person living with HIV (PLHIV), who is on Antiretroviral Therapy (ART) and has achieved an undetectable viral load in their blood for at least 6 months is non-existent.

Also, "Oral" covers so many sins and not all of them are risk-free but it's low risk for sure.

Anyhow, hope you get clarity soon in regards to the relationship but do give yourself and her time.

Best, Jim

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Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #29 on: January 11, 2020, 11:31:55 am »
Thanks Jim 👍

Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #30 on: January 11, 2020, 05:12:41 pm »
I donít mean to bump my own thread again by double posting. Just wanted to say, after writing that stuff down, sleeping on it, and reading Jimís post, Iím good on that issue (the sex and relationships thing) and donít need more feedback. To be honest, I think it might not just be the HIV thing, I think that she is having some commitment issues. I love her and appreciate her being here for me, so Iím not going to stress it. I did break up with her earlier in the year, and thatís on me(well, I had my reasons, and thatís on her too, but no worries). I donít blame her for being unsure, as she may be unsure whether I will commit for long term. I think she is using the HIV thing as an excuse for us not being as intimate (and I donít mean just sex) and she may still be deciding whether she wants a committed relationship with me in the long run, may still have feelings from a past relationship or something, and I think sheís not saying that directly, because she doesnít want to lose me, but still hasnít made up her mind. I think she feel more comfortable blaming the HIV instead of saying she has unresolved feelings in other ways.

Point is, I donít think itís actually an HIV related issue in terms of our relationship status(I think it may be part of it, but really, more of her and I figuring out what we want for ourselves). Thus, going to leave that topic alone.

And I can live without sex, itís not that big of a deal in the big picture, especially not in the short run. But it did make me feel better to vent about it on this forum, definitely better than pushing the issue. Going to leave that topic alone with her, try to be a good partner, and whatever happens happens. I think the relationship will work out, but if not, I think her and I will have mutual respect is a we part ways eventually. For now, I am just happy to be sharing a home with someone who cares about me and has been supportive of me during a difficult time for me. So just not going to worry about it. Will do something nice for her today, sheís been depressed, both because Iím sick and seems she has mixed emotions about our relationship and what she wants to do with her life. If she decides to commit for long term and wants more intimacy, awesome.If not, so be it. Thereís other aspects of our relationship weíve not seen eye to eye on and Iím not going to get into it on here, and I think we can work it out, but if we have too different of expectations, no hard feelings. Sheís still cool in my book either way, and we have had a hell of a good time together these past few years.
 
Btw, when I woke up this morning I felt pretty good in terms of how my body feels(have had a shitty feeling of fatigue and an odd head ache type of sensation since starting treatment, body just feels weird and general discomfort, though  this morning, a little bit less of that feeling than usual). Got good sleep last night. Probably the best Iíve felt in terms of health since diagnosis. Usually I wake up in the morning and in my head am like ďahhhh I feel like shit!Ē and the remember- ďoh yeah, I have aids, thatís whyĒ. My biggest fear is just having major discomfort for long term, as really donít feel like myself when the shitty physical feeling eclipses everything else. I know this is a life long condition, and that Iíll improve, was worried that I wouldnít improve to where my quality of life was at a reasonable level. Now Iím more confident that Iíll get there. Those first weeks after diagnosis with the hives and severe lactic acid and the liver toxity shit I was like ďoh fuck no my life is overĒ but now Iím like ďok, this wonít be so bad after allĒ. 
 
Thanks for all the feedback and time to site operators and forum moderaters. My next bloodwork is February(doc skipped an appointment for January, was doing blood work monthly prior), will report back here with my numbers then. Until then, I think I am getting back in my grove, as long as I donít get sick again(fingers crossed!).

Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #31 on: February 17, 2020, 06:03:24 pm »
Hello!

Update from me.

First off, I was tripping out about the relationship stuff. Was mostly my own insecurities. I am certain she wasnít interested in anyone else and I was just overthing stuff, stressed about diagnosis, and all that sort of stuff. Our relationship and love life has improved a lot since then. Had an argument the other day, had a good valentines day dinner and stuff, but that night got in an argument later that night about plans for her birthday and our original anniversary. Also went on an unhealthy online gambling binge. Anyway, it escalated way more than it should have, to taking about break up and stuff, but between Valentineís Day, her birthday and the our anniversary(after having a brief break up last year, which was right before my diagnosis, I was really mentally unwell due to my health issues I was unaware of), and my diagnosis and difficult time I had with treatment initially/meds/ fevers, hospital, etc, weíve been through a lot. So itís natural for emotions to run high, and I think her and I will be just fine and thereís nothing to worry about. Other than that, life in this regard has been better than since the last time I posted. Sheís been a saint to me considering the circumstances.
 
Iíve been productive lately, working on some online business stuff, going very well, so I am happy I am getting my life back on track in this regard also.

Anyway, before I get to my new numbers from my blood work. This past month is the healthiest Iíve felt in a very very long time. About three or four weeks ago, I was still really wasnít doing well. I remember feeling like I was ok again, than I went to the grocery store with my girlfriend(which is more than I had been doing before, had been staying home and not active for the most part since diagnosis). I had thought I was getting past my fatigue and had regain my strength, but about five minutes of walking around I felt lightheaded and unwell. When I got the car a burst into tears and had her drive home because I didnít feel well, I was ready to be healthy again and thought I was ok now but I wasnít. 
 
The good news is, is the weeks following, I finally did get past my fatigue for the most part, at least in comparison to before, and I can go to the store and walking around, walked seeping the park the other day, and so forth, and have been ok. And what I am really happy about is the feeling of unwellness(fatigue doesnít justify whatever I was feeling) which I attributed to possibly medication side affects in addition to low cell count, maybe the liver toxicity I had the first month,  and recovering from all those fevers and stuff has mostly gone away. And when I am well rested, well hydrated, and have eaten well, I almost feel normal again, which is awesome, because before I was in constant discomfort.

Anyway, to my numbers. My viral load is still undetectable. My tcell/CD4 count is 75. I am devastated. It has been two months since my last blood work, and just over four months(closer to 5 months) since diagnosis. I have gone from 5, to 21, to 69 by the third month, to 75. Which means I average 3 a month increase. This news crushed me. I need to be over 100 to be able to get my next vaccine. I was confident I was over 100 now. With such a low increase I think it could be plateauing which is devastated news. I was optimistic I could be back over 200 in the first 12 months. I realize the implications this may have on prognosis, life expectancy, and quality of life.i realize this could mean I wonít get above 200 and will never be able not take antibiotics everyday anymore. I donít want to think about it. However, I am pretty sure my numbers may have been higher if I was tested a different day. Hadnít been eating and sleeping as well the five days or so prior to my appointment, and was on an odd sleep schedule so was sleep deprived at my appointment. I think if they tested me five days earlier I probably would have had higher numbers.

Anyway, I am not going to let this discourage me. I still am feeling better than last time I posted. My weight was down, I had been slacking on my regiment of ensures and protein shakes, and hadnít been eating as much as I should have been despite much improved appetite. So Iím am going to try to increase my calorie intake and continue forward, I think I will be fine.

Some good news is, I now have no allergic reaction to our dog anymore, we were able to bring our dog home, and literally no antihistamines or anything needed and Iím not having any reaction. I was having bad reactions before when my cell count was low.

I had a bit of of a reaction to the vaccine I had at this past appointment, but I do not regret getting it, as it not only protects me from pneumonia but also sinus infections which have been a reoccurring issue for me for years. Recently a boil appear on my skin on stomach. It has flatten a sort of looks like it could be either benign or early stage skin cancer. I sent photos to my doctor, and she thinks it could be a benign skin reaction and not cancer, but I will go to a dermatologist to make absolutely sure. 
 
I am confident if I get back on my routine of better sleep, higher calorie intake, protein shakes, and some supplements(but not too much), I be feeling very good again. Well feeling crappy a few days after the appointment due to vaccine side affects which are normal for that particular vaccine. Confident Iíll be feeling like my old self again soon.

Thank you for your support and to anyone going through same thing, keep a positive attitude and a sense of humor and you can fight through, because we have no choice to but to ďstay positiveĒ - ammiright? Lol. Anyway. I hope next update is better. But aside from my cell count, my health and the way I feel in terms of baseline feeling has improved significantly so I am relieved very much as I was very concerned as I simply was just having a very uncomfortable quality of life in terms of that really unpleasant constant feeling of unwellness I was having at first. Also very happy I have acclimated to my medications, side affects have dissipated.

Offline Loa111

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #32 on: February 18, 2020, 08:59:43 am »
It takes a long time from a advanced DX with very low CD4 for your CD4 to increase. The more advanced, the longer, though individuals can vary as we've all different bodies. If it helps you any... it took me months to get from 22 to 50, and then my CD4 hung out around 50+ level for nearly a year. Only my 2nd year into treatment has there been increases, i.e. it's almost 2 years now and I've just creeped over the 200 level 241 to be exact.

There's nothing I or you can do about CD4 other the take our meds, keep healthy n fit and try to relax.

I even tried willing my CD4 to increase lol but hey just give it time.
It is not a Race ;)

Offline leatherman

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #33 on: February 18, 2020, 12:04:59 pm »
I have gone from 5, to 21, to 69 by the third month, to 75. Which means I average 3 a month increase. This news crushed me.
cd4s count can vary by up to 100 points within a day so statistically, while your meds have been dealing with killing off HIV, your cd4s are fairly steady. Of course there is a slight trend upwards which is good news. Until your count is over 200, often it's better to look at the cd4 percentage number than obsess about the actual number. The percentage is a more stable number and also a number that looks at more of your immune system than just the cd4s. Here's another better way to look at this - cd4s are best considered as a trend of at least 3 tests over 6 months. So in 6 months your body has been working ridding itself of HIV and starting to recover from all the damage that has happened to your body to becoming undetectable to seeing a slight rise in your cd4 count. That's an awful lot you've been through from getting sick, being sick, and just beginning to recover, so you really shouldn't be upset by the recovery. Remember, recovering is a good thing, even if it's a slower recovery.

I had thought I was getting past my fatigue and had regain my strength, but about five minutes of walking around I felt lightheaded and unwell. When I got the car a burst into tears and had her drive home because I didnít feel well, I was ready to be healthy again and thought I was ok now but I wasnít.
ugh. I feel for ya. Back in the late 90s (as I was trying not to die of AIDS) I found that being "half sick" is really quite miserable. Unfortunately the start of recovery sometimes isn't much better but at least now you're on the upside of being "half sick". ;)  It's good to hear now that you're feeling better every week that goes by.

I need to be over 100 to be able to get my next vaccine. I was confident I was over 100 now. With such a low increase I think it could be plateauing which is devastated news. I was optimistic I could be back over 200 in the first 12 months.
as mentioned, your cd4s were vastly depleted and while it's good to have the right attitude expecting a great recovery, don't be upset when a miracle doesn't happen - because it rarely does. Just remember, you haven't died, you've gotten treatment, and you've started getting better. Now that you're on ARVs and HIV has become less of an issue for your body to deal with, you'll continue getting better.

I realize the implications this may have on prognosis, life expectancy, and quality of life. i realize this could mean I wonít get above 200 and will never be able not take antibiotics everyday anymore.
sorry but I have to laugh a little about that. :) I had counts down to 5, nearly died of AIDS/PCP pneumonia twice, and took 12 years to get over 200. I've lived with HIV for 35 yrs now, been on meds for 25+ yrs, I'm about to turn 58, healthier than ever and hoping/expecting to live as long as my grandmother who will turn 103 in August.

When the prognosis was death the night before my 36th birthday, I hoped for that miracle - and got it with new HIV meds. When the prognosis was death the night before my 38th birthday, I just expected I'd pull through again because I had before and because the meds had improved so much. My life expectancy has gone from hours, to days, to weeks, to months, to years. I'm now expecting quite a number of decades more. My quality of life couldn't be better - I have a dog, a husband, a good attitude and a house we just bought a year ago. (I going to have to stay alive a lot longer because our mortgage won't be paid off until I'm 87!) I hit the gym 3-5 times a week, spend as much time as possible working in the yard, take meds for other minor issues, can't wait to set up my new pool in this new backyard (cause I still look good in a tan and a speedo  8) ) and I've had a pass to the local amusement park for the last 7 years. I can't tell you how many times, the hubby and I are the oldest people in the line for the roller coaster and 30-40 yr old parents ask if their kids can ride with us because they're too scared to ride with their own kids. LOL I may be poor, I may have HIV, I may be older but my quality of life is awesome because I worked hard to make it this way.

Your prognosis, life expectancy, and quality of life now depend on you. Stay adherent to ARVs, exercise more, eat healthier, rest more, test and treat for other conditions (you know, all that stuff that will happen just as you get older - blood pressure, cholesterol, getting a colonoscopy, etc.), and make sure to take care of your mental health. Good self-esteem and a positive attitude work wonders towards keeping healthy!
leatherman (aka mIkIE)

Offline Pete_

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Re: 3 months since AIDs diagnosis, sharing story, seeking support.
« Reply #34 on: March 12, 2020, 03:45:03 pm »
Quote
sorry but I have to laugh a little about that. :) I had counts down to 5, nearly died of AIDS/PCP pneumonia twice, and took 12 years to get over 200. I've lived with HIV for 35 yrs now, been on meds for 25+ yrs, I'm about to turn 58, healthier than ever and hoping/expecting to live as long as my grandmother who will turn 103 in August.
This provides me some hope. I have been feeling more fatigue this past few weeks. Different than before, I seem to have acclimated to the meds better than I had, but Iím tired more often. I am worried my cd4 count is decreasing. I see your chart and your story, so I hope all is within normal range and Iíll make a recovery in the long run even if I have some draw backs on the way. My concern is that both mental and physical fatigue seems to be increasing. I havenít been taking the mk677 stuff as often because running out of the bottle I ordered, maybe a contributing factor, I think it was helping my energy levels. Getting plenty of sleep, doing pretty well with calories and protein. Feeling exhausted mentally, emotionally, and physically. I am hoping physically and mentally Iíll get my vitality back. I hope I havenít just worn myself out. Had some weeks with increased energy and motivation, now Iím feeling drained and whipped out. Plus now this coronavirus bullshit has to be going on. Going to spend some time with my family and live with them for awhile. My gf has been supportive Iím not worried about relationship stuff anymore, i feel terrible for jumping to conclusions and judging her in previous posts, was sorta all over the place mentally, wasnít good to have diagnosis and break up in the same weeks, sorta skewed my perspective, and my perspective was already skewed due to the illness and protein defencency I was unaware of. I just want to get better right now. Not having as much fevers and congestion stuff, though am feeling more tired. Was feeling more like myself before, now feeling sorta brain dead and fatigued. After lower than expected CD4 numbers last time concerned the my CD4 will be lower not higher next check up. Though, on the bright side, you mentioned you were eventually able to get over 200 again, and I see from your charts you survived some major CD4 dips and illness along the way, and weíre still able to make a recovery in the longer run. So not gonna stress, trying not to feel defeated.

 


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