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Author Topic: CMV concern  (Read 13934 times)

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Offline Kaki22

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CMV concern
« on: May 31, 2023, 06:18:12 am »
hi! just got diagnose with HIV last may 22 this year. I am currently taking isoniazid as tuberculosis preventative treatment. I'll be able to start taking arv after 2 weeks of isoniazid.

now back to the main topic. I've had conjunctivitis recently, thinking it will recover on its own, didn't do anything. It lasted one month and went to the doctor. the doctor prescribed antibacterial ointment and thankfully it cleared after five days. 2 days after the recovery, I still have a bit of blurriness in my eyes. I was wondering if this is cmv and would like to ask what are your experiences with cmv. I don't have the what we call "floaters" and "blind spot" though..

Online Jim Allen

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Re: CMV concern
« Reply #1 on: May 31, 2023, 06:27:40 am »
Hiya,

You should go back to your doctor and let them check and treat the blurred vision, as plenty of things can cause that, not just CMV.  No point focusing on something most likely isn't causing the issue before ruling out other issues. If your doctor thinks CMV retinitis is a concern, I believe it would be an ophthalmologic exam to confirm.

Quote
hi! just got diagnose with HIV last may 22 this year. I am currently taking isoniazid as tuberculosis preventative treatment. I'll be able to start taking arv after 2 weeks of isoniazid.

Sorry, to hear about the diagnosis; what was your recent CD4 count/viral load?
Glad to hear you have access to HIV treatment and will start soon. Any idea what HIV treatment you will be starting on?
« Last Edit: May 31, 2023, 06:34:33 am by Jim Allen »
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Offline Kaki22

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Re: CMV concern
« Reply #2 on: May 31, 2023, 06:41:39 am »

Sorry, to hear about the diagnosis; what was your recent CD4 count/viral load?
Glad to hear you have access to HIV treatment and will start soon. Any idea what HIV treatment you will be starting on?

I'll be starting on cART, TLD specifically. as per CD4 count and viral load, I'll know it when I get back to the treatment center on june 6. It's sure its going to be an issue in terms of adherence but i know i'll manage and adjust. thank you for this support group, my body felt lighter.
« Last Edit: May 31, 2023, 07:03:18 am by Kaki22 »

Offline Tonny2

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Re: CMV concern
« Reply #3 on: May 31, 2023, 09:01:13 am »






            ojo.            Hi there!!… welcome to the forum.


When I got CMV RETINITIS my cd4 level was zero, first symptoms, floaters, then retinal detachments. I never had pink eye, so check with your doctor. You need to know if your CD4 levels to see if you are at risk of getting CMV, meanwhile, check with your doctor about your pink eye.


CMV is a serious infection, I hope you don’t have to deal with it… please keep us posted

Offline Kaki22

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Re: CMV concern
« Reply #4 on: June 05, 2023, 10:18:31 pm »

Sorry, to hear about the diagnosis; what was your recent CD4 count/viral load?
Glad to hear you have access to HIV treatment and will start soon. Any idea what HIV treatment you will be starting on?

unfortunately, i will have to wait for 1 year after arv to have a free cd4 count/ viral load test. I'll start saving money for these tests so I can get earlier results. I need the results because I'm afraid i might have a drug resistant HIV.

Offline leatherman

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Re: CMV concern
« Reply #5 on: June 06, 2023, 05:49:04 am »
unfortunately, i will have to wait for 1 year after arv to have a free cd4 count/ viral load test. I'll start saving money for these tests so I can get earlier results. I need the results because I'm afraid i might have a drug resistant HIV.
where do you live? It seems like there should be at least one cd4/vl test in any country to make sure the meds are working long before a year's weight. Maybe knowing your country, someone can offer up some information/assistance.
leatherman (aka Michael)

We were standing all alone
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Acting like a mover shaker
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And I think about it all the time
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Offline Kaki22

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Re: CMV concern
« Reply #6 on: June 06, 2023, 07:42:03 am »
where do you live? It seems like there should be at least one cd4/vl test in any country to make sure the meds are working long before a year's weight. Maybe knowing your country, someone can offer up some information/assistance.

I'm from the Philippines, there are many clinics that offer cd4/vl test but are expensive. There are free tests but it takes one year after the start of taking arv. They said that as long as I adhere to the medication, the virus won't develop drug resistance. I'll have to contact my other healthcare provider for help and second opinion.
« Last Edit: June 06, 2023, 08:06:52 am by Kaki22 »

Offline Tonny2

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Re: CMV concern
« Reply #7 on: June 06, 2023, 12:56:18 pm »





           ojo.             Hi kaki22… usually, when you are diagnosed doctors check your viral load and cd4 levels so they can tell how much the virus has “damage” your immune system and do you have a base line so they can see how your medication is working… another for you to have a risk of CMV retinitis. You will had to be diagnosed with aids which is less than 200 cd4. wishing you the best and please keep us posted.

Offline Kaki22

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Re: CMV concern
« Reply #8 on: June 07, 2023, 10:31:17 am »

do you have a base line so they can see how your medication is working… another for you to have a risk of CMV retinitis. You will had to be diagnosed with aids which is less than 200 cd4. wishing you the best and please keep us posted.

my healthcare provider explained to me that the treatment hub is lacking enough resources, particularly the cartridge for the cd4/viral load test. so the earliest they can do it is 3 months after the arv medication. i also kind off felt like they think there's no need to rush because the HIV infection is in the early stages, got tested for HIV on april and its negative, then became positive on may after my second testing.
« Last Edit: June 07, 2023, 10:34:39 am by Kaki22 »

Offline Tonny2

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Re: CMV concern
« Reply #9 on: June 07, 2023, 01:07:02 pm »






                   ojo.             Hello there!


Well, if your infection is recent, you don’t have to worry about opportunistic infections let alone CMV retinitis. I am sorry about the lack of resources in your country… good luck and please keep us posted

Offline Kaki22

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Re: CMV concern
« Reply #10 on: June 23, 2023, 01:11:46 am »
Hi! Currently on my 17th day of taking arvs, TLD in particular. I just wanna ask if my schedule is 1pm, do I have to take it 1pm sharp, or is there a window period?

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Re: CMV concern
« Reply #11 on: June 23, 2023, 01:31:34 am »
Hiya,

Ideally, you take the meds at the same time every day; Having a set routine & time helps prevent you from forgetting to take your meds; However, life happens, and a few hours early or late isn't going to be an issue.

I aim to take my pills within the same four-hour window per day. I get up in the morning around 6 am and take my meds at some time between 6 am - 10 am.  Things that can help are setting a reminder on your phone or, if 1 pm isn't working out, pick a better time to take your meds.

This question has come up before, adding a few thread links as you might find it useful to read.

Adherence
https://forums.poz.com/index.php?topic=73377.msg

https://forums.poz.com/index.php?topic=64111.msg

Adherence?
https://forums.poz.com/index.php?topic=71153.msg
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Offline Kaki22

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Re: CMV concern
« Reply #12 on: June 24, 2023, 12:09:50 am »
Thank you. I was stressing about adherence recently. I'm also taking multivitamins with my arv treatment. Should I also take probiotics and omega 3? If there's any supplement I could take to assist my treatment, let me know.
« Last Edit: June 24, 2023, 12:12:33 am by Kaki22 »

Offline leatherman

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Re: CMV concern
« Reply #13 on: June 24, 2023, 06:41:39 am »
If there's any supplement I could take to assist my treatment
HIV is reduced to UD by taking daily meds. Your cd4s recover based on your genetics. There really isn't anything else to do or to take that will change your VL or cd4 count.

If taking vitamins, probiotics or omega3 makes you feel healthier, then go ahead because being healthier never hurts; but it won't make any difference in your HIV treatment.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Kaki22

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Re: CMV concern
« Reply #14 on: July 24, 2023, 08:45:35 am »
Update
In general, this is how HIV diagnosis and treatment work in the Philippines (at least in public treatment centers).
When you obtain a positive result, you immediately start arv treatment following some lab tests (essentially testing your liver, kidney, heart, and lung condition). There is no cd4 test for persons like me because it is only given to people in the advanced stage (they will classify you as such if you only display symptoms of opportunistic infections). Every year, my viral load is measured (so I won't know whether I have art failure or not any time soon). In addition, if I have art failure, my healthcare professional will simply move on to the next regimen without genotyping it.
On the lighter note, arvs are free here.
I can still take cd4 and viral load test as early as I can, however it will be expensive. I’m concerned and was planning to get a private doctor and a health insurance to cover the costs of genotyping, cd4 count and viral load.

Online Jim Allen

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Re: CMV concern
« Reply #15 on: July 24, 2023, 08:57:57 am »
I can still take cd4 and viral load test as early as I can, however it will be expensive. I’m concerned and was planning to get a private doctor and a health insurance to cover the costs of genotyping, cd4 count and viral load.

You most likely missed the boat on doing this as standard genotypic resistance testing, so don't bother paying for that.

See standard genotypic resistance testing requires that there is a viral load present. If your meds are working, genotypic resistance testing will not offer any insights, it would be a waste of resources, and if the meds are working, it would suggest there most likely aren't any resistance issues. 

The time to do this was before starting treatment.

https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-and-adolescent-arv/drug-resistance-testing

Now, I should add there was a paper on using proviral DNA to test for drug resistance testing when the viral load is suppressed, but I doubt it will ever be standard even if resource-wealthy nations.https://www.aidsmap.com/news/jan-2020/proviral-dna-resistance-testing-allows-treatment-switches-without-viral-rebound

Quote
cd4 count

Also somewhat irrelevant now. Don't bother.

As you started treatment already, the only thing that matters now is VL to check the treatment is working and standard labs to check your health, kidney function etc, routinely.
« Last Edit: July 24, 2023, 09:02:36 am by Jim Allen »
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Offline Kaki22

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Re: CMV concern
« Reply #16 on: November 13, 2023, 07:56:25 am »
Hi! its been 5 months already since my diagnosis. I'm about to get my 1st vl test this december. since i don't have any quantitative testing, i'm gonna to see it based on my observation. I've been taking TLD and i'm feeling better, this is because I only have runny nose once ever since taking it, and I recovered with just 2 days (i'm assuming that my immune system is working properly). I stiil need to do vl test though to have accurate analysis on my health. but with my observation, could this be a good sign? I'm also taking probiotics from time to time to help my gut health.

Online Jim Allen

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Re: CMV concern
« Reply #17 on: November 14, 2023, 06:27:45 am »
I'm glad to hear you are starting to feel better.

Quote
with my observation, could this be a good sign?

Not being dead or in the ICU is always a good sign but otherwise, it doesn't mean much.

Quote
I'm about to get my 1st vl test this december

Good, keep us posted.

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Online Jim Allen

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Re: CMV concern
« Reply #18 on: November 14, 2023, 09:58:25 am »
Quote
I stiil need to do vl test though to have accurate analysis on my health

The VL is going to tell you if your HIV meds are doing their job and suppressing the virus. This is really important to know your meds are working and having a suppressed viral load means the virus is no longer doing unchallenged measured and unmeasured damage to your health.

However, the VL is not a measurement or analysis of your health.
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Offline leatherman

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Re: CMV concern
« Reply #19 on: November 14, 2023, 12:24:36 pm »
Quote
the VL is not a measurement or analysis of your health.
just a note that the CD4 count is not a measurement of your health either. It's just a measurement of one part of your immune system.  ;)
leatherman (aka Michael)

We were standing all alone
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And I think about it all the time
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Offline Kaki22

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Re: CMV concern
« Reply #20 on: June 11, 2024, 08:17:45 am »
hi, its been 1 year since my diagnosis. my vl is less than 40 copies/ml based last january. my next vl test is this december. would it be better though if I check my viral load earlier than this? maybe july?

Offline leatherman

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Re: CMV concern
« Reply #21 on: June 11, 2024, 08:32:34 am »
no, you don't need an earlier test. While we, us and our doctors, hope we show up "undetectable", successful HIV treatment is anything <200. Just keep on your daily meds. ;)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: CMV concern
« Reply #22 on: June 11, 2024, 06:54:11 pm »



            ojo.          Hello there!… I Letterman told you, due to no need to take an early test wait until it is time for you next vital load test. There is no need for you to spend your own money
. Right now you are and detectable. I suppose you’re feeling good and just keep taking your medication as prescribed and you will be fine. Leatherman and Jim Allen are very knowledgeable about HIV so you can trust them. We are here for you and please keep us posted… Go back to live to normal life… Hacks.

Offline Kaki22

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Re: CMV concern
« Reply #23 on: July 05, 2024, 03:23:44 am »
Hi again! i took my arv around 1:30 pm, then induced a vomit around 2:30pm. i didn’t see any parts of the pill in my vomit. should I take another dose? although my adherence is still above 95%. btw im on philippine time in case your confused with timing of this message.
« Last Edit: July 05, 2024, 03:28:17 am by Kaki22 »

Online Jim Allen

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Re: CMV concern
« Reply #24 on: July 05, 2024, 03:29:33 am »
Quote
should I take another dose?

https://www.aidsmap.com/about-hiv/faq/what-should-i-do-if-i-throw-after-taking-my-hiv-meds

Quote
then induced a vomit

Why did you do that? Are you unwell, is there something wrong?
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Offline Kaki22

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Re: CMV concern
« Reply #25 on: July 05, 2024, 03:37:26 am »
i think i may have bulimia. i felt like i took too much food so i decided to induce vomit.

Online Jim Allen

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Re: CMV concern
« Reply #26 on: July 05, 2024, 03:52:14 am »
I'm sorry to hear this, that's tough. Have you looked into getting professional support from any healthcare professionals?

I don't know how to help you with Bulimia, but if you ever want to talk, I am here for you and I can listen.


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Offline Kaki22

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Re: CMV concern
« Reply #27 on: July 05, 2024, 03:58:03 am »
yes, I've been seeing therapist for this. thank you for the concern. its been 30 mins+ past the event. I've already take another medicine. :). I also apologize for this kind of questions ,this is my first encounter of the situation. I was anxious because this somehow entails my adherence to the medication. Thank you for the help.
« Last Edit: July 05, 2024, 04:15:03 am by Kaki22 »

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Re: CMV concern
« Reply #28 on: July 05, 2024, 04:15:06 am »
Sure, np.

Glad to hear you have access to and getting professional support. Remember if you ever feel the need to talk or even vent we're here for you, you are not alone. Hugs.
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