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Main Forums => I Just Tested Poz => Topic started by: Motul86 on February 20, 2021, 01:34:42 am

Title: Newly Diagnosed -Strange numbers-
Post by: Motul86 on February 20, 2021, 01:34:42 am
Hello everyone. I tested positive on February 9th. By the 12th I was already taking meds (Viktarby). Also on the 12th I had blood tests done and days later my CD4 came in, I was glad to know it was at a healthy 760. More days passed and earlier today I just received my viral load at a perplexing 113/ml. CDC states that anything below 200 is considered viral suppression (again, before medication even started).

Im confused. Should I even be taking meds? Am I HIV resistant? I was taking Truvada Prep before but very undisciplined. Any remarks are greatly appreciated!
Title: Re: Newly Diagnosed -Strange numbers-
Post by: Motul86 on February 20, 2021, 01:46:40 am
This is my viral load result. I can't stress enough that I hadn't been taken meds at the time the sample was taken. I now have been on meds for exactly 1 week:

(https://i.ibb.co/Fb42D37/viralload.png)
Title: Re: Newly Diagnosed -Strange numbers-
Post by: Jim Allen on February 20, 2021, 02:15:08 am
Hiya.

Sorry to hear about the diagnosis but welcome to the forum and I hope you find the support you need here.

I removed your other posting as it was duplicate and the rule is not to post our problems in other peoples threads. Hope this makes sense.

Quote
Should I even be taking meds?

The short answer is yes. Treatment is recommended nowadays, regardless of VL/CD4 counts for better health outcomes and reduced mortality.  https://forums.poz.com/index.php?topic=2276.msg744247#msg744247

Untreated HIV viral loads will go up and down. With treatment, this will be suppressed and mirrored in other fluids/tissue.  A few months/year after acquiring HIV, the VL load might be low, and CD4's somewhat recovered. A temporary settling or levelling off point, I suppose.

An illustration of the above.
(https://i-base.info/ttfa/files/2009/06/without.gif)

Quote
More days passed and earlier today I just received my viral load at a perplexing 113/ml. CDC states that anything below 200 is considered viral suppression (again, before medication even started).

Yes/No, anything under 200 is considered UD in terms of forward transmission. All you have to do is keep it medically suppressed below 200 for 6 months by continuing to take the meds so you can't sexually pass it on. https://forums.poz.com/index.php?topic=71848.0

Treatment wise, it generally accepted under 50 copies is fully suppressed/UD for best outcomes. Some labs can monitor lower levels, like 20 copies. Anyhow, you have a little way to go still.

Quote
Am I HIV resistant? I was taking Truvada Prep before but very undisciplined.

There is no reason to believe your HIV has resistance to the meds. If the medication does not fully suppress and keep the virus suppressed within 6 months you might need to switch but again, no reason to believe its an issue.

Quote
Viktarby
I've never heard of this one. What's in it?

How are you feeling/doing otherwise?
When is your next follow-up with the doctor?

Best, Jim

https://www.poz.com/basics/hiv-basics/starting-hiv-treatment
https://www.poz.com/basics/hiv-basics/switching-hiv-treatment

Title: Re: Newly Diagnosed -Strange numbers-
Post by: Motul86 on February 20, 2021, 04:48:53 pm
Thanks for your reply! I'm going to strongly suggest to my Dr that I get off the meds and simply monitor my levels every 3 months to make sure the viral load is kept at bay as was the case before I started taking meds. I see no point in taking medication for a viral level so low, it seems almost like overkill, especially considering the very important side effects they can cause over time.

The partner studies determined any VL below 200 to be untransmissable. Furthermore, the first study of its kind, in the year 2000 in the UK, determined such level at 2000, so a full log higher. Also as a 100% bottom it's also a lot harder to pass it on.

I feel like with a VL of 113 I have much leeway and medication is not necessary as much as monitoring and keeping a close look at my levels to make sure my CD4 stays high and VL stays low. If/when things change, then I would start medication, but this can be years down the line, potentially.

Benefits of waiting? 1) Better drugs/treatments come on the market. Maybe even a cure now with the mRna technology used for Covid as seen in a very promising light to prevent/cure other viruses/illnesses. But at the very least, the once a month or twice a year injections.

2) Less toxicity from medication, less strain on kidneys and liver.

I am stubborn, yes, but I feel like I have science on my side on this one. I just need to convince my DR.
Title: Re: Newly Diagnosed -Strange numbers-
Post by: Jim Allen on February 20, 2021, 05:05:17 pm
End of the day it's your choice.

I don't agree with what you posted I say this based on the studies, evidence and personal experience but each to their own. With modern meds even the elite controllers are recommended to start treatment for long term better health outcomes rather than delaying treatment.

However, do wish you all the best with your treatment choices. It's something that we all have to decide for ourselves.

The 2000 VL no transmission is just nonsense. Context to this topic is looking at more than one study with the lowest recorded transmission at a VL 362. We know without treatment spikes in VL can happen in other tissue/fluids.

Anyhow, take care.  Hope you are otherwise feeling/doing okay.
Title: Re: Newly Diagnosed -Strange numbers-
Post by: leatherman on February 20, 2021, 09:01:09 pm
especially considering the very important side effects they can cause over time.
after being poz for 36 and on meds for 26 yrs, to hear someone is worried about long term med side effects is depressing. Reading the data that is published with each medication (ie the "package insert"), you can see that for every med, the short term side effects are few and rare (when only 3% have "nausea" for example that means that a whopping 97% never have that issue) and long term effects are not the norm either.

While I certainly understand that others do have some issues, and that this is only anecdotal evidence, after nearly 3 decades of nearly 25 different HIV meds, I have NO short or long term effects. But I'm not surprised. That's exactly what the data shows happens for most people. as I approach another birthday soon, it's turning 59 that is contributing to my health issues and not HIV or the meds.

I see no point in taking medication for a viral level so low, it seems almost like overkill
you're missing the whole point of HIV meds. They are not designed to cure you (or raise your cd4s) but only to suppress your viral level to as low as possible. Some of us start meds late after HIV has already gotten out of hand and has become a full blown health problem. Luckily, catching HIV at such a low level simply means that you'll be able to keep that low level with meds, never dealing with the actual side effects to be worried about - the negative, and in the end deadly, effects of living with untreated HIV.

I hope you rethink this issue. The whole point of taking meds is to keep the low viral load that you're lucky enough to have when starting meds. ;)
Title: Re: Newly Diagnosed -Strange numbers-
Post by: Grasshopper on February 21, 2021, 03:29:14 am
I totally agree with Jim & Leatherman.

Perhaps you should research the matter further before you make a definite decision.

Contacting this group/people perhaps ? : "the Zephyr LTNP Foundation Inc."

Zephyr used to be active in this forum years ago. read here her story:

https://www.poz.com/article/exception-rule-elite-controller-loreen-willenberg

Good luck
Title: Re: Newly Diagnosed -Strange numbers-
Post by: virgo313 on February 21, 2021, 12:13:26 pm
I would suggest to rethink ur decision & go on meds which is the standard recommended thing to do regardless what the numbers are.

Let’s say we human are like frozen meats, we do not want to let it thaw & slowly become defrost stage & later soft & start taking meds to “move back” to frozen stage again. I got tested only when I was at the “soft” stage & even if I can get back to frozen stage, some juices might have flow out already.

As other have said, it is totally ur choice. We can only suggest & hope. Tks
Title: Re: Newly Diagnosed -Strange numbers-
Post by: leatherman on February 21, 2021, 12:26:37 pm
some juices might have flow out already.
totally gross  :o
but good analogy  ;)

stay "frozen" my friends :D
Title: Re: Newly Diagnosed -Strange numbers-
Post by: virgo313 on February 21, 2021, 12:45:50 pm
Yes thanks leatherman, will stay frozen & be as fresh as can be.
No direct flight to Cancun from where I live.  :D
Title: Re: Newly Diagnosed -Strange numbers-
Post by: Motul86 on February 21, 2021, 04:24:43 pm
Thank you all for all the advice, you all make a lot of sense. I will have the conversation with my Dr. and go from there!
Title: Re: Newly Diagnosed -Strange numbers-
Post by: Seigmeyer-of-Catarina on February 23, 2021, 01:07:42 pm
I was just diagnosed this month as well and I have been deep diving into as much info as possible. From my understanding, the reason it's recommended to take medication immediately is for a number of different reasons. A big one is to reduce your overall viral reservoir, and from my understanding there aren't current tests to detect dormant virus in cells. Another good reason is based on one study that found that if you begin treatment with a CD4 count of >400 you actually have a life expectancy that is slightly longer than the general population. Ill try and find the link to that study if I can.

Since being diagnosed, I have found retroviruses fascinating in the way that they use your own cell infrastructure to reproduce. The virus has two outcomes during replication. They can either become active virus and infect more CD4 cells or remain in a dormant state. You can think of chicken pox as a parallel; if you've had chicken pox, you will always have it, its just in a dormant state, and only manifests as shingles if it begins to reactivate. Elite controllers are able to keep the virus in a dormant state.

So with all that in mind, I would still encourage you to begin medication, just to be safe, as your numbers are really good so why not maintain those values. Its always possible you could be an Elite Controller, but its incredibly rare. Only 1 in 300. I would think the truvada may have contributed to a low Viral load before considering the prospect of being an Elite Controller. So if I was in your shoes this is sort of what I would consider; You're numbers are good, but the only way to find out if your viral load remains naturally low without medication, is to NOT take medication. However, if the numbers do spike upon your next blood work, you've kind of needlessly put off treatment. It wont be the end of the world, but why not get started as soon as possible and keep that reservoir to a minimum? Also the medications for HIV are not even remotely as damaging to your body as untreated HIV.
Title: Re: Newly Diagnosed -Strange numbers-
Post by: Almost2late on February 24, 2021, 01:36:12 am
This is my viral load result. I can't stress enough that I hadn't been taken meds at the time the sample was taken. I now have been on meds for exactly 1 week:

(https://i.ibb.co/Fb42D37/viralload.png)

Taking meds early enough with such a low viral load I believe would put a lid on any accumulation of hiv hiding in your body.. smaller reservoirs, less complications I think. You'd be ahead of the game imo.