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Author Topic: 48 million viral load during acute hiv with fever and moderate flu like illness  (Read 29037 times)

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Offline gpapadop91

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Hi guys.  How us your Saturday going??

I'm inn the beach with my wife ..
Kisses from here.

I want to ask something.
1 month of art , I went from 2800 WBC and 170 cd4 to 5600 and 280cd4
2months of starting art , 3800
2months + 1 week again 3800 I didn't count cd4

I'm also having small very small lymph bul a but enlarged in my both sides of neck.

So I'm worrying if hiv vl grew up again or cd4 decreased in number.

What about covid vaccination? I had it first dose in one month after starting art treatment.
Maybe my body still creating covid antibodies that's why this happened???

I read on net that when we plhiv vaccinate , VL increases generally with every vaccine.

Can anyone explain if this is true and why does it happen?

Offline gpapadop91

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https://www.hindawi.com/journals/dm/2013/276547/

In the study reported by Ramilo et al., which studied HIV-infected children, it showed that 5 of 15 HIV-1-infected children who received influenza vaccination showed an increase in HIV viral load up to 150% after immunization and 4 of 15 patients showed that the HIV viral load returns to baseline level within 6–8 weeks ...
https://www.hindawi.com › journals
Immune Activation and Viral Replication after Vaccination with an Influenza A ..

Offline Jim Allen

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Hiya.

Even if you're VL slightly blipped post a vaccine it's not an issue at all. People living with HIV are recommend to get certain vaccines and I've see no large scale scientific evidence to contradict this or indicate an issue. (Will post links later)

Also, your healthcare provider, the WHO, the CDC would not be recommending and vaccinating you if it was an issue.

See your healthcare provider about the lymph node, stop googling and looking for issues.
« Last Edit: August 07, 2021, 07:48:02 am by Jim Allen »
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Offline gpapadop91

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Thanks Jim
Yes I agree to not Google so much, but for informative reasons it would be nice to know what happens after vaccinations.... Is it normal that one month later my WBC lowered a lot, and maybe a viral load a bit increased?
I haven't measured at two months...
They will take blood from me at 23 of October. 3 months after the first measurement.

I'm only afraid to not build a resistance to these good pills that I took , which made me undetectable within a month..
Today I have second covid vaccination with Moderna.

Online leatherman

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1 month of art , I went from 2800 WBC and 170 cd4 to 5600 and 280cd4
2months of starting art , 3800
2months + 1 week again 3800 I didn't count cd4
. . .
So I'm worrying if hiv vl grew up again or cd4 decreased in number.
in your numbers you list "WBC", which is "white blood count" not HIV viral load. Are you confusing these numbers? As far as concerning HIV, the important numbers are: HIV VL, CD4%, CD4 Absolute.

I'm also having small very small lymph bul a but enlarged in my both sides of neck.
quit touching them. I can't tell you how many times people have posted here about lymph nodes in their neck. to be honest, just like you (and everyone else) never had your cd4s checked before being diagnosed with HIV, I bet you never touched or even thought about you lymph nodes before now. But now in "unrealistic worry mode", you're actually looking at parts of your body for the first time and analyzing these parts based on vague notions of what you think they should look or feel like. Did you know that pushing on the lymph nodes in your neck can irritate them? and, yikes!, enlarge them.

Check with your doctor about your lymph nodes if you're concerned.

What about covid vaccination? I had it first dose in one month after starting art treatment.
Maybe my body still creating covid antibodies that's why this happened???
why "what" happened? your lymph node might have been slightly enlarged for the first 24 hrs after a covid injection. HIV viral load would not be affected at all. WBC could slightly increase 2-4 wks after the injection as the response to producing antibodies

I'm only afraid to not build a resistance to these good pills
you're worrying about more stuff you need not worry about. resistance to medication can only happen if you are not adherent to taking daily meds. If you take them haphazardly, it could happen; but taking meds every day doesn't cause resistance.

I posted this just the other day to someone else about resistance:
resistance can develop when the amount of medication falls below the optimal level to keep the virus suppressed. Normally we take daily meds, which keeps the level of medication high enough to stop HIV from replicating. As we have reservoirs of HIV in our system which can occasionally activate, daily meds keep suppressing this HIV from gaining a foothold.

If however a person falls below 95% adherence, but continues to take some meds, the med level drops too low to be effective. Imagine someone simply stopping meds. At some point there aren't enough medications in their system to suppress HIV and it can once again begin to flourish. Most of the time, this doesn't result in resistance. However imagine someone skipping a day here, a couple days there, and that's where problems begin. With no meds HIV can flourish; but with some meds in their system, but at too low a level to be effective, HIV can mutate against the meds. That's resistance. From then on, even if the patient goes back to being 100% adherent, HIV isn't suppressed by that med anymore.
leatherman (aka mIkIE)

Offline gpapadop91

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Thank you Leatherman. Good evening.
😊😊😊Yes I know what WBC stands for.. but also cd4 is linked to WBC as a percentage of it

Anyways it's strange
0 days off treatment , 2800 WBC , 49 millions VL , 167 cd4
29 days - covid first dose vaccination
30 days , 5600 WBC , UNDETECTABLE , not touchable lymph nodes in neck , 276 cd4
52 days - 3800 WBC
60 days , 3800 WBC , touchable lymphs but not as swollen as in primary infection.

Isn't strange to have lowered WBC even when I have suppressed vl.
If you read on the article in my previous message, It says somewhere is normal to have a pick up in viral load after vaccinations generally...

Ouf , I want to have normal WBC (also cd4) to feel safe ...from cancer, because I have cd4/cd8 equal to 0.4

Offline gpapadop91

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A decrease in white blood cells may be the result of HIV medications (like AZT or ganciclovir), a minor viral infection, or a major opportunistic infection like tuberculosis. CD4 T-cell lymphocytes are a type of white blood cell that HIV preferentially targets and infects.

https://www.verywellhealth.com/white-blood-cell-counts-hiv-tests-49353


Offline gpapadop91

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I'm really worried...

When I was able to recover WBC from 2800 to 5600 , why now I dropped to 3800 and cannot increase again??

It's really problem.
I want to know the reasons.
Shouldn't I???
So I can know what to be careful , what to avoid and what to do as a lifestyle so I can protect and keep immune system in a good position??

Offline gpapadop91

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Another thought I have now is this .
About this oral thrush that I have last three weeks and it started around 5 days after first dose of covid Moderna mRNA vaccination, which was 29 days of initiation ART.

I am still having this oral thrush.. a bit closer to front teeth now..seems to resolve the back position and it came a bit more front ...

Can this thrush makes my WBC to drop a bit , when it remains untreated???

Offline Grasshopper

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What did you do with the advise some of us gave you earlier = to make an appointment asap with your doctor and a psychologist/counselor to adres these questions/issues ???

Offline gpapadop91

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Hi thank you...

Appointment with doctor, for what exactly topic?
Lymph? WBC? What?

You gave right , I must do something with my mental health...
But please , really tell me !!!

How can I be well mentally???

Look ..

"HIV treatment is highly effective. Many people's CD4 count will start to climb after starting treatment. Long-term HIV therapy can result in your CD4 count returning to the expected level for your age. Once your CD4 count improves, with continued treatment and care, your life expectancy is very good.

Other factors, such as age, viral load, genetic make-up, lifestyle and quality of health care will also affect your future health and life expectancy.

After starting HIV treatment, some people’s CD4 cell counts do not increase, or rise very slowly, even though their viral load is ‘undetectable’. This can mean they are at greater risk of becoming ill and of dying of HIV-related illnesses. They may also be at greater risk of developing heart disease and cancers.

If this is the case, it is very important that you receive careful health monitoring so that any developing health problems can be detected and treated early.

Your lowest-ever (also called ‘nadir’) CD4 count may have an impact on your long-term health, even if your immune system has since recovered. Current data suggests that having once had a very low CD4 count is associated with a slightly higher chance of developing some health problems in the future.  "


-My lowest nadir 167cd4...
-some people’s CD4 cell counts do not increase, or rise very slowly, even though their viral load is ‘undetectable’. This can mean they are at greater risk of becoming ill and of dying of HIV-related illnesses
-

These are my case..
So please...
Right me your thoughts....

I'm really thinking there is not reason to live , if I know I cannot reach 60 - 70 years, that I will have earlier hiv illnesses and cancers and sarkoma kaposis and tuberculosis and I cannot do nothing to recover my fucking WBC and cd4s....

?????so? How can I be fine and feel well???

https://www.aidsmap.com/about-hiv/diagnosed-hiv-low-cd4-count

Offline Almost2late

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Hello gpapadop91, sorry you are suffering through this, but it is really unneccessary.. you already have treatment that stops HIV from doing more harm to your immune system,
giving it a chance to repair itself

-My lowest nadir 167cd4...
-some people’s CD4 cell counts do not increase, or rise very slowly, even though their viral load is ‘undetectable’. This can mean they are at greater risk of becoming ill and of dying of HIV-related illnesses
-

These are my case..
So please...
Right me your thoughts....

I'm really thinking there is not reason to live , if I know I cannot reach 60 - 70 years, that I will have earlier hiv illnesses and cancers and sarkoma kaposis and tuberculosis and I cannot do nothing to recover my fucking WBC and cd4s....

?????so? How can I be fine and feel well???

https://www.aidsmap.com/about-hiv/diagnosed-hiv-low-cd4-count

I had a way lower nadir than you, I was also upset, confused and angry. I had kaposi sarcoma and it went away with the same treatment that stopped the HIV progression.

You ask "how could you feel fine and well?".. if you're not in physical pain and all it really is is you worrying about "what if".. then you need to understand  that the odds are in your favor to have a healthy productive life with medication. Try that and try and be happy.

Offline gpapadop91

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Ηello... Really helps...thanks for this..

But ok , hiv will stop replicating..
But anyways , always I had bad WBC.
4500-5000

I never checked my cd4 before.
But now having low cd4 , and nor being able to increase its number, I will sure have cancer , lymphoma, or something soon...
Already fungus in my mouth didn't resolve yet....
What the hell?

Jim had right. Although I start treatment in acute phase, However my immune was weak already from always , so I had/be aids.

I'm so disappointed and desperate now

Offline Jim Allen

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Look I understand this may feel overwhelming at the moment, many of us have been through the same, you are not alone and this phase of feeling overwhelmed will pass.

Although, I really think you should consider talking to your doctor about how you are feeling and coping so they can help you or refer you to someone who can help with the emotional/mental aspect of digesting this diagnosis.

Quote
But now having low cd4 , and nor being able to increase its number, I will sure have cancer , lymphoma, or something soon...

That aidsmap item you quoted, you are fully misreading reading it or reading/quoting out of context. It's also a very generic article, not a personal forecast or prognosis.

You also have to keep in mind that not everyone in our group has the same circumstances or history, and other factors and health issues play a role such as poverty, smoking, drinking, drug usage, hepatitis and other comorbidities are all factors in things.

The same can be said for the life-expectancy thing that you are stressing about, despite that as a group our life expectancy with modern treatment is near normal.

If you want to live healthier and try and reduce your risks of developing certain issues in life you can, focus on what you can control, take your meds, cut out bad habits, don't smoke, eat healthier, exercise etc. 

Now I've said this before but ill repeat it, when CD4 counts are extremely low we have an increased risk for certain OI's, but once the VL is suppressed the CD4 count becomes less relevant and the risks decline.

Quote
Already fungus in my mouth didn't resolve yet...

It's just overgrowth and pretty common regardless of HIV status, no need to stress but as a few of us pointed out go and get it treated, problem solved.

As for HIV & your lab results, you only just started treatment so give your immune system time and keep working with your HIV doctor.

Jim

p.s I have not added links as I've given them already in this thread.
« Last Edit: August 08, 2021, 02:20:38 am by Jim Allen »
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Offline Jim Allen

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Hello gpapadop91, sorry you are suffering through this, but it is really unneccessary.. you already have treatment that stops HIV from doing more harm to your immune system,
giving it a chance to repair itself
I had a way lower nadir than you, I was also upset, confused and angry. I had kaposi sarcoma and it went away with the same treatment that stopped the HIV progression.

You ask "how could you feel fine and well?".. if you're not in physical pain and all it really is is you worrying about "what if".. then you need to understand  that the odds are in your favor to have a healthy productive life with medication. Try that and try and be happy.

Great post and fully agree.
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Offline Jim Allen

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Maybe you should consider taking a timeout from googling & reading up on any more stuff about HIV and instead spend the time looking after yourself.
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Offline gpapadop91

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Jim.. good morning.. really helps... Really...
However I have these small physical pains in kidneys but as long as I see normal kidney tests I will be ok...
I just need a safer or alternative treatment than TAF/emcitritabine to feel safe on the long run for my only one kidney ...

However, there are times I feel very well and times I feel very badly that cannot stop googling...

For example , in the morning I heard in a nice video this wise statement "knowledge is gold because with correct knowledge you can have correct choices, which in their turn can give great results"..

What do I want to say?
Doctors don't talk and don't tell us enough things..

All night reading I learned this ..

-Opportunistic infections can cause low bone marrow work..I have candidiasis so it's normal to have some abnormalities in WBC.
-Anemia ( many low indexes : low iron , low Ferritin , low b12 , low vit d, low folic acid) can not help marrow to work properly
And I have this too.

I try to search how for example I can raise folic acid levels?
There is supplement of 5mg but , some CDC articles warn that intake of more than 0.8-1mg per day has been linked to greater risk of some types of cancer...
So you have to take half pill every three or four days...

Why should I have to read so much to auto heal myself?
I appreciate doctors, are our gods now , without them we would feel so unhelped but I want to tell that without correct and enough information by them , it's normal that we feel unsafe and depressed some times...
If they could talk to us more thoroughly , then we would feel more safe left to their hands...

Kisses hugs and wishes for nice Sunday and healthy Sunday. 🌷🌹😘

Offline Almost2late

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Maybe you should consider taking a timeout from googling & reading up on any more stuff about HIV and instead spend the time looking after yourself.
And I totally agree with Jim here.

Gpapadop91, you should really consider taking Jim's advice because the very stress you are inflicting on yourself may be doing your immune system harm.. take a break and do something you love.

I myself remember coming out of the hospital after my diagnosis, weak with only 13 cd4's, a bunch of pills and stressed out. I would go for walks in the park and eventually got my strength up to ride my bicycle again, while listening to music. In hindsight, I believe this helped me a great deal.

Leaving this link here for you..
Quote
"When we’re stressed, the immune system’s ability to fight off antigens is reduced. That is why we are more susceptible to infections.

The stress hormone corticosteroid can suppress the effectiveness of the immune system (e.g. lowers the number of lymphocytes)"..
https://www.simplypsychology.org/stress-immune.html

Offline gpapadop91

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It's been 22 hrs after vaccination with Moderna .. I feel holy shit... You cannot imagine , it started three hrs ago.
Slight fever 37,5 , headache , body aches , bone marrow pains , feeling face to be burning....

Is this good? Or not?

Online leatherman

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Is this good? Or not?
What you're experiencing is "normal" for some people. You'll feel better tomorrow ;)

https://www.sharp.com/health-news/why-the-second-dose-of-covid-19-vaccine-has-more-kick.cfm

Quote
If You Received a Second Shot
Side effects after your second shot may be more intense than the ones you experienced after your first shot. These side effects are normal signs that your body is building protection and should go away within a few days.
https://www.cdc.gov/coronavirus/2019-ncov/vaccines/expect/after.html

Quote
Common Side Effects
The most commonly reported side effects, which typically lasted several days, were pain at the injection site, tiredness, headache, muscle pain, chills, joint pain, swollen lymph nodes in the same arm as the injection, nausea and vomiting, and fever. Of note, more people experienced these side effects after the second dose than after the first dose, so it is important for vaccination providers and recipients to expect that there may be some side effects after either dose, but even more so after the second dose.
https://www.fda.gov/emergency-preparedness-and-response/coronavirus-disease-2019-covid-19/moderna-covid-19-vaccine
leatherman (aka mIkIE)

Offline gpapadop91

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Οufff
I'm dying guys... It's too hard... Maybe more severe than primary infection..
I cannot wait days...
And due to kidney I don't want to take pills if fever is not above 38,5

Offline Jim Allen

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Stop it, you are not dying from the shot.

Drink plenty of water, plenty of rest today and if you feel very unwell call your local Doctor.
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Offline gpapadop91

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Jim I am feeling like this.. really... It's so difficult and unpleasant... Having pains in my kidney too... What the hell can this be??
I mean the pain in kidney??

Offline gpapadop91

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Jim .. I don't wanna take everyday pills. Please don't be strict to me... I feel that bad now that's making me thinking all the time the kidney which pains and I think it will fail in some period.

When we are about to take Lenacapavir?
Every six months sounds good.
Will this be alongside ART?

Please understand me why I feel like this... I don't feel well , I am alone at home... I need your companion. My wife left yesterday to her parents where is our son...
I feel so bad alone...
My girlfriend which is from Poland is out for coffee and is not nice that she will visit me in my  familyhome...

Please text me some comments...I need it...

Offline Jim Allen

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About the kidney, you mentioned pain before getting the vaccine as well, the answer really remains that if you are having pain go and see your doctor.
 
Quote
When we are about to take Lenacapavir?
Every six months sounds good.
Will this be alongside ART?

The CALBRATE trial is in phase 2, it's alongside daily ART for now and when it would be available. Maybe within a few years, maybe never outside of treatment for people with resistance.

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Offline Tonny2

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         ojo.          @OP…I really feel for you but, as Jim told you before, if you are having pain and you are worried, go see your doctor, please. There is nothing with can tell you so you pain will go away.

As for taking meds everyday, either you take it/them or get more problemas so more pains…we are here for you but we also have lives to live and maybe even more problems that your kidney’s pain, I’m telling you this with respet. Maybe it’s time for you to seek mental professional help, because we can’t heal your physical pain for more kind words we can offer to you…I wish you the best, also, I wish I could talk to you via PM but I’ve been having lots of pain in my blind eye that I’m seriously considering getting rid of it for good…hugs

Online leatherman

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I don't wanna take everyday pills.
don't feel bad. Everyone that takes high blood pressure medications, cholesterol meds, insulin, arthritis, skin issues, psyche meds, pain meds, just to name a few, don't want to take meds every day. No one does. But sometimes you have to if you want to have better healthcare. HIV is just not special anymore. Instead treating it is just like with a whole lot of other diseases - pills every day.   ;) :D
leatherman (aka mIkIE)

Offline gpapadop91

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Hey guys....
Just wanted to inform and maybe take opinions because I may think not correctly...

I was searching about lowering dose of my pills.
Unfortunately , TAF is patented and not available in single pills regimen. It's a single pill but only for Hepatitis B , which theoretically I could break in two pieces so I could take half dose as it happens with recommendations from clinicalhivinfo website for example about the second drug of Descovy the emtricitabine.

https://clinicalinfo.hiv.gov/en/guidelines/adult-and-adolescent-arv/table-7-antiretroviral-regimen-considerations-initial-therapy?view=full

There is stated here , if you have Crcl < 50 ml/min you can take 100mg every day or 200mg every 48hrs.

Anyways , I saw these drugs could control immediately my 49 millions within a month.
So why not maybe decrease a bit dosage of Descovy which contains TAF which has been linked to kidney failures.??

Another thought is to cut with pill cutter at 3 pieces so I can take 2/3s or 67% of the daily regimen of these two drugs.
The insentress which has not been associated with many problems in kidneys I will not do nothing.

I know you will tell me to not do this...

But I wanna ask something.
If the same pill is given to a 59kg human and the same to a 130 kg human, why not to lower the dose to protect my kidneys as much as I can.???
Why not?
Hiv Doctors want to treat hiv. Don't care so much about other problems.

Secondly if it's said in the above website that emtricitabine for example can be reduced, why not tenofovir??
Ok I'm lucky I use TAF and not TDF... But if I can do something more...for example , I think for sure Gilead has put a bit more drug in pill for safety reasons , so if I take a 33% Less and lose weight maybe it can be equally successful but also able to avoid nephrotoxicity.

Offline gpapadop91

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Something more.

For everyone using Descovy and insentress.

I have several bone pains , and main spinal pain back from pneumons.

Offline gpapadop91

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About covid vaccination with Moderna three days ago and flu like illness afterwards... Remember referring too many incidents of kidney pains??
Today , after a big pain again in the morning , seems to not having , or one or two times only.

Do you think it maybe associated with clot possibly created by covid mRNA vaccine?
It's said they cause such kind of clots
So could this be possible to be a clot in kidney vaeins? Causing some inflammation?

Offline Jim Allen

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Quote
I know you will tell me to not do this...

Is your Creatinine clearance less than 50 ml/min?

Anyhow, the combo you are taking is safe and you are being monitored, the dosage will suppress the virus and if it's not causing an issue so I don't see a need for chopping pills up into thirds and even if you had a problem the answer is to switch not chopping up your pills.

But by all means, discuss your idea with your doctor.

Quote
About covid vaccination with Moderna three days ago and flu like illness afterwards... Remember referring too many incidents of kidney pains??
Today , after a big pain again in the morning , seems to not having , or one or two times only.

Do you think it maybe associated with clot possibly created by covid mRNA vaccine?
It's said they cause such kind of clots
So could this be possible to be a clot in kidney vaeins? Causing some inflammation?

You had pains before the shot and continue to have pains afterwards...
See your doctor about the pain.

Quote
I have several bone pains , and main spinal pain back from pneumons.

See your doctor if you are experiencing pain so they can check for the underlying cause and treat it or switch you to another combo if that is needed.

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Offline Grasshopper

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Now you are into Cutting pills ???? Reading stuff on the internet and while understanding only a fraction, you feel ready to play doctor ?

Sir...THAT'S the way to go if you want to mess up your body and life.

You are playing with fire, and could end up causing irreparable damage to your body.

BEWARE: Messing with the dosage of your meds, could cause resistance to an entire group of meds.

This is my last response to you. I hope you take the steps needed to get the appropriate/b] (mental) health care.

Good luck and best wishes
« Last Edit: August 10, 2021, 12:56:30 pm by Grasshopper »

Offline gpapadop91

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Is your Creatinine clearance less than 50 ml/min?

Hey Jim, good afternoon.
How are you?

I know , I wouldn't do it without talking with him too.
Just sharing thoughts.

No, yet my Crcl is 95 , currently.
But indeed serum creatinine rose to 0.97 from 0.7-0.8 that was always before.
If it rises more than one in my next measurement , it will be meaning real big problem.

Do you know why I'm so worried?
It's new...hiv, diagnosis, having past history with kidney, its for life, side effects, stigma, vulnerable to other. Illnesses, fear for losing work friends siblings, misinformed people, big viral load in beginning, very low  ok low cd4 count , low cd4/8 ratio, pains in kidneys already, ...
Is all this situation easy to digest and can this be done so fast???

I am also worried because if I have problems from kidneys in next measurements , then I cannot switch to another regimen.

From what I have read, and I mean not forums but medical and governmental websites and organisations websites, this what I take is the safest scheme for my kidneys....

If they don't discover new treatment safe for kidneys soon I will die , because my life means traveling and with dialysis I cannot travel.. my life will be prison... So please give me some time and understanding , and please don't judge me for telling some not normal things sometimes...
I just need my time and you.

Also I have elevated uric acid 8 with upper limit 7 and always was 5-6 , urea... always was 20-25 , now is 38 with limit 50 ...

Ouf....

Wishes for a peaceful night guys...

Offline gpapadop91

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You are playing with fire, and could end up causing irreparable damage to your body.
Good afternoon , ...
Although strict enough with your latest comment about leaving your last comment on me, I appreciate your wishes ..

Just feeling I am already with my back on the wall...
Aidsinfogov recommends/not using many meds when initially diagnosed with above 100.000 and for some other regimens above 500.000 vl. I had 100 times more.. 😂🤣😂
And same time 167 cd4.

And as Jim says this is late stage of AIDS.

Also this situation is associated with elevated risk of renal failure...and I have one kidney working 95%. Yet...

So I feel like being with my back on wall , lacking alternatives schemes and vulnerable to everything..
I was about to never have covid vaccination.

After diagnosis I was waiting for a month to have more than 200 cd4 as my  doctor advised and immediately went for vaccination the same day. All around me asked me , how??? You???

Because they don't know now I am vulnerable ...

I am also afraid that I will not be able to use the injectable monthly scheme of cabotegravir/rilpivirine because rilpivirine it's connected with viremia failure when having had > 100.000 vl.

But I don't know if they mean to avoid start with rilpivirine in subjects with VL above 100k or just wait until it comes below 100k for six months and then so you can have it for treatment.

You don't know how difficult is to take my meds when I'm at work working with colleague in same car , hiding my pills , asking going for snack and when he goes to toilet immediately searching my bag to find and  take ..

Anyways...

Hope to injections lasting for six months soon... Before I have reduced renal function.

My best wishes too...

As for mental health care you referred to...I read and understood today...
Common side effects both of Raltegarvir and Emtricitabine are depression and some times ideas of suicide.

Hugs and wishes for all of us.

Buy guys.

Offline Jim Allen

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Hiya,

Were going in circles.

You don't have a problem with your current treatment and good odds you never will.

Take the treatment, stop reading up on stuff as knowledge is pointless without the wisdom or clarity of mind to digest it. See your doctor every 6 months to monitor your labs, stop stressing about irrelevant snapshot results for the moment and that's all you need to do for now in terms of HIV.

In the meantime focus on looking after your emotional and mental health. I agree with Grasshopper and others who have already commented that you should consider getting some professional counselling or therapy to help you.

Now if you really want to improve your physical health make sure to focus on what you can control not what you can't control. Cut out bad habits, stop smoking, get vaccinated, eat a balanced diet, get plenty of rest, and exercise.

Jim.

Quote
Aidsinfogov recommends/not using many meds when initially diagnosed with above 100.000 and for some other regimens above 500.000 vl. I had 100 times more.. 😂🤣😂

Irrelevant recommendation or perhaps better to say a guideline not an absolute vs real-world treatment and care. You took the meds, it worked, VL is suppressed.

Keep taking the meds.


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Offline gpapadop91

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Jim thanks... 🤗

Online leatherman

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And as Jim says this is late stage of AIDS
you know this isn't 1990 anymore right? And that people who get treated for HIV (if your VL is UD then you have reached "successful treatment") don't die right? You are needlessly worrying....but we've all told you that several times.

You don't know how difficult is to take my meds when I'm at work working with colleague in same car , hiding my pills , asking going for snack and when he goes to toilet immediately searching my bag to find and  take ..
good grief! what med(s) are you taking? If it needs to be taken with food, take it with dinner at home. If it can be taken anytime, then take it at home in the morning, or at night, and don't even bother taking your pills to work.

and btw, most people will never even pay attention to you taking meds. no one really cares. And if someone was actually rude enough to ask about them - lie. 8) those could be blood pressure pills, antibiotics, vitamins, etc.
leatherman (aka mIkIE)

Offline Jim Allen

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Quote
And as Jim says this is late stage of AIDS.

I never said and never would say " late stage of AIDS " If I had, and to my knowledge I never have, I would be extremely disappointed in myself.

You are needlessly worrying....but we've all told you that several times.

Yeah, I agree.
« Last Edit: August 10, 2021, 05:45:47 pm by Jim Allen »
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Offline gpapadop91

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if your VL is UD then you have reached "successful treatment
Hello Leatherman , nice to see you and I'm happy to feel you close to me these difficult times for me...
Tell that I'm more sensitive, that I'm more scared, I'm not so strong , I don't know what...
Maybe because all my life my mom grew me up by saying "be careful because if you need to take pills you will harm your kidney".
Don't ride bikes because if you fall you will lose your kidney..
Don't drink alcohol...
Don't take supplements..
She had right and I love her because I was more careful but I'm more fearful too....
For example I took protein in my 20-23 when I had body building all time.... Then I read a lot about how much they harm kidneys , and I read this again in kidney.org that when you want to take care of Kidneys and stop progressing CKD you have to be within BMI limits and take 0.8-1.2 max protein gr/kg of body weight per day. And I was taking with one kidney 3gr per day...
But at 23 I stopped....

My friends still take at 36...

Anyways...

About viral load I'm happy...yes....but doctor told me there is need to confirm with the second measurement in 3 months from 1st measurement i.e in 4 months from starting treatment. And again at 7 months.

But my WBC falling from 5600 to 3800 make me think that some Rebound caused this drop.

So we will see... I hope it will be undetectable again.hope.
Because then. I will write all day and night here..
😂🤗😂🤗

Quote
as for taking meds with dinner
As for my work , I don't have standard times and standard position. All time changing. Some times I work early mornings and some times night. Normally I work 7-15 , next day 15-23 , next day 23-07 etc....
Next day free from 07 to 07-15 of next day.

So some times because I take meds 15-20 somewhere between these times , doctor told me no problem to take meds with different times +-2,3 hrs every day. Problem is to lose 12 hrs and again because like this you miss doses.
And my colleagues are really gossipers , not only will ask what pills are these but if they see the number they will Google and then find what is it...

😂🤣
They want to know everything or else cannot sleep at nigh.... really

Offline gpapadop91

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I never said and never would say " late stage of AIDS " If I had, and to my knowledge I never have, I would be extremely disappointed in myself.

Jim , sorry... I was misunderstood by you. I'm sorry. Just wanted to be laconic and used these words. I don't remember exact words but anyways you told me that high vl and cd4 <200 is something like progressed illness..

I don't want to put to no-ones mouth words that didn't say...I'm not that kind of person at all...
I mean it was a reason to feel a bit more stressed to know that really having low cd4 is bad ... And you had right.. what matters most is cd4.  I read in aidsmap.com too....
But me having always low WBC , so consequently even before illness I couldn't have more than 500cd4 when I have always lymphocytes 100-2000max

Anyways thanks for all your help...

Today I had less pains in kidneys. 4-10 times.

After vaccination I had for two days 100-200 times or more , every 1-2mins I had or maximum every 5 mins.
I connect this as having some small clot...this is my explanation.

Anyways..
I will keep you posted for informative reasons for when someone searches for effects on kidneys of Moderna covid vaccine when being treated for hiv by Descovy and Insentress.

Offline gpapadop91

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Anyways , guys I appreciate your time, your help, your interest.
I'm really respectful for your interest. You can count on me when in Greece for everything. Your friend and brother George.
Wishes and hugs.
Good night

Offline gpapadop91

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Although highly active antiretroviral therapy (HAART) decreases HIV-associated mortality, it does not to completely restore health. Patients doing well on otherwise effective HAART remain at risk for cancer, cardiovascular/liver disease, osteopenia, and other "non-AIDS-defining" events. While complete eradication may never be feasible, a "functional cure" in which patients are able to maintain undetectable viral loads indefinitely without therapy may be possible

https://clinicaltrials.gov/ct2/show/NCT01025427

How can you be optimistic when reading this???
Never cure
No restore of health even when on art
Illnesses like cancers , heart attacks etc...

Ouffff

Offline Jim Allen

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How can you be optimistic when reading this???

Extremely and with ease. Without even looking I know what you are reading was studied or published at least 10+ years ago.

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Offline daveR

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How can we be optimistic? Easy, we have no choice. This is the hand fate has dealt me, and you. I choose to enjoy the day that I am living. I certainly don't worry about what may happen years from now. You seem to live your life differently from many of us for now. You will get use to this diagnosis eventually, we all do. None of us are happy with it but none of us can change it. Acceptance.
I suggest you try some mindfulness, I practice it and see others on here do. Stay in the present moment.

Offline gpapadop91

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Hello friend... I know there is no choice...
Like death..we will all die. We know this.
It takes time , but if there is a more safe treatment , I will accept it totally. My f@@ng pains every day remind me the Illness.Not the pills.
If there is a better treatment soon, I will be totally ok.
My friend Jim and all of you helped me a lot... really..
Only having to login and see your messages and the contact with you make me feel very nice..or nicer...

Hey friends...how can I send you pics from where I am? I am everyday coming to beach to enjoy my coffee... And I want to share with you moments making me happier than the first days that I was all day at home and watching TV and waiting to sleep early...

As I told you Jim convinced me that I have to accept it like sth simple that we have to take just some pills per day. Good food, enough rest, exercise... That's it.
Ok, I totally agree by time...

If tenofovir will not destroy my kidney , it will be totally ok for me... really .

I am just curious , why so highly leveled scientists didn't yet find some effective yet safe pills??

I saw in. Clinical trials that bnAbs are studied for at least 5-8 yrs already...what th hell? If some of them treated off art for 4-24 weeks some, why don't they give us?
..........
Another topic.
Can you please recommend me any book or do you go to group or private lessons???

Offline gpapadop91

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I mean about mindfulness.

Offline gpapadop91

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Heyyyy

Greetings to everyone from here...

Online leatherman

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I know what you are reading was studied or published at least 10+ years ago.
not only is this an old study but it only had 16 participants - of elite controllers no less.

hey again.  :D gapadop91 I think some of that summary is worded more clinically/scientifically than what you or a layperson might have understood
Quote
Although highly active antiretroviral therapy (HAART) decreases HIV-associated mortality, it does not to completely restore health.
ARVs only stop HIV from replicating. The meds do nothing to "restore health" (whatever that means, as I don't see it defined in this study). Meds stop HIV from replicating which allows your immune system to recover; but the meds don't make your immune system any better. Once HIV is stopped, your immune system recovers all on its own.

If you read it from a clinical standpoint, they're just saying what we already know about ARVs. They don't make a patient's health better; they stop HIV so that a patient's health can recover.

Quote
Patients doing well on otherwise effective HAART remain at risk for cancer, cardiovascular/liver disease, osteopenia, and other "non-AIDS-defining" events.
personally, I find this statement worded imprecisely. "at risk" is the not the same as "might be more susceptible". Smoking puts you "at risk" for cancer; but that doesn't mean you're definitely having cancer in the future. It just means that compared to people who don't smoke or those who have quit smoking, you would be more likely to develop (i.e. to be "at risk" of developing) cancer in the future.

Quote
While complete eradication may never be feasible, a "functional cure" in which patients are able to maintain undetectable viral loads indefinitely without therapy may be possible
A cure might never be found. HIV is a very tough disease to deal with. As I often tell people, if you want a cure faster, you need to learn microbiology and figure it out for all of us. Otherwise we'll just have to wait until someone else figures out a cure. It's easy to be an "armchair quarterback", but doing the science to find the cure is several paygrades above most of us. In the meantime, a pill or two a day isn't all that big of a deal. Many of my friends, who don't have HIV, take more pills than that daily.

Quote
I am just curious , why so highly leveled scientists didn't yet find some effective yet safe pills??
because HIV is a retrovirus which has been incredibly difficult for scientists to deal with. You say "effective yet safe", and I ask "have you read the package insert that comes with your medications? Did you look up the information at the manufacturer's website?" Medications are only approved to go onto market when the amount of effectiveness is high and the negative side effects are low. Reading the information about each med, you can see for most medications that while there may be higher ranges (0% - 15%) of mild side effects (nausea, headaches, etc) there are always lower ranges (usually 0% - 5%) for harsh effects or long-term effects. In effect, this means that 90% - 95% of patients don't experience any side effects - well except the desired side effects of stopping HIV from replicating. ;)
leatherman (aka mIkIE)

Offline gpapadop91

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Hey Leatherman... Good evening , how are you??
Nice to find you here...
Didn't read yet your post... Now I'm going to read it...

But before see this please.

I started with 167 cd4
A month on ART I had 276
Look this pic https://www.dovepress.com/cr_data/article_fulltext/s255000/255751/img/HIV_A_255751_O_F0002g.jpg
I had a week after the first Month, i.e at 5 weeks after art initiation some minor oral thrush deep in cheek between gums..
It resolved and it became in front.
Now I have the same minor in the other side ..Same place...but on the left now...
Should I consider that I will never have more than 500 Maximum cd4 according to the above pic?

I'm worried because I found out that having confections, even this small thrush, or vitd deficiency, I also have low folic acid, and low b12. All these make bone marrow to function less...true???
What can I expect?

Because anyways I have low cd4/cd8 ratio close to 0.4 and generally low cd4 count ,both related to cancers...

And ok, you have right bro tell me that I should only look after myself and not things I cannot do nothing with , but if I can do something to help immune and you know from experience , please tell me ...
Thanks 👍

Offline gpapadop91

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