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Author Topic: Strange lab results  (Read 10709 times)

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Offline manchesteruk

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  • Posts: 631
Strange lab results
« on: August 04, 2011, 10:02:53 AM »
Hello All,

Hope you are all doing well. I just thought I'd ask a question on here regarding some recent lab results.  For those who don't know my history I'm a LTNP meaning my body seems to be able to control the virus well without the need for medication.  My last lab results were CD4 919 (40%) and viral load undetectable.  Had my latest results back today and my viral load was still very low at 55 but my CD4 count was 265 (18%).  Now I'm inclined to believe that this is just a bit of a strange result because I haven't been ill recently or anything like that.  Going back tomorrow for more tests anyway.  Just wondering if anyone here had experienced such a big drop before?

Thanks,

Chris
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline metekrop

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  • Posts: 364
Re: Strange lab results
« Reply #1 on: August 04, 2011, 11:21:44 AM »
Hello All,

Hope you are all doing well. I just thought I'd ask a question on here regarding some recent lab results.  For those who don't know my history I'm a LTNP meaning my body seems to be able to control the virus well without the need for medication.  My last lab results were CD4 919 (40%) and viral load undetectable.  Had my latest results back today and my viral load was still very low at 55 but my CD4 count was 265 (18%).  Now I'm inclined to believe that this is just a bit of a strange result because I haven't been ill recently or anything like that.  Going back tomorrow for more tests anyway.  Just wondering if anyone here had experienced such a big drop before?

Thanks,

Chris

I haven't yet checked into your history, but do you mean that you are not under treatment or medication anyway?
Diag on Dec 8, 2000, CD 440 VL 44K, No Meds
Dec/08 - Feb/09 CD< 50 & VL >500k hosp'z.
St. Atripla - July/09 CD 179, VL 197k
Oct/09 CD 300 VL UD Chol 267
Mar/10 CD 468 UD, Ch 220
Aug/10 CD 460 UD, Ch 195
Dec/10 CD 492 UD, Ch 172
Mar/11 CD 636 UD, Ch 201
Aug/11 CD 530 UD, Ch 98
Jan/12 cd 616 UD, ch 189
Jul/12 CD 640 UD, Ch ?
Dec/12 CD 669 Ud, Ch 125
May/7 CD711 Ud, Ch?
Nov/ 22 663 UD, Ch,
April 17 CD 797,
Oct, 14 CD 810 UD

Offline newt

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  • the one and original newt
Re: Strange lab results
« Reply #2 on: August 04, 2011, 11:28:46 AM »
It is most likely a duff result. A retest is the right way to go.

I had an opposite experience when my CD4 came back in the 800s. Turned out someone else's results had been posted on my file.

- matt
"The object is to be a well patient, not a good patient"

Offline Basquo

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  • Posts: 3,277
Re: Strange lab results
« Reply #3 on: August 04, 2011, 01:21:27 PM »
I haven't yet checked into your history, but do you mean that you are not under treatment or medication anyway?

You don't need to check his history, he said he wasn't on medication when he said:
Quote
For those who don't know my history I'm a LTNP meaning my body seems to be able to control the virus well without the need for medication.

Chris, Newt's right, this is probably just an off round of testing. Even if it were an outright blip downward I wouldn't sweat it until I saw a trend. We LTNPs tend to think "Right, this is it" when we start feeling sick or get a strange lab result. The important thing is to keep yourself under the care of your doctor and you're obviously doing that. Let us know what the next results are.

Offline Inchlingblue

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Re: Strange lab results
« Reply #4 on: August 04, 2011, 02:07:29 PM »
I thought people designated as LTNP still had viral loads, albeit not too high.

I had not heard that LTNP could remain undetectable without meds.

Offline Basquo

  • Member
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Re: Strange lab results
« Reply #5 on: August 04, 2011, 03:04:09 PM »
Yes, LTNPs have low-to-undetectable viral loads. Mine is undetectable from time to time, but not as much now as say 8 or 9 years ago. Still very low, though.

Offline Nestor

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  • What we love, we shall grow to resemble.
Re: Strange lab results
« Reply #6 on: August 04, 2011, 03:52:59 PM »
I thought people designated as LTNP still had viral loads, albeit not too high.

I had not heard that LTNP could remain undetectable without meds.

I think there are a few different categories--elite controllers, viremic controllers, LTNP, LTSP etc.  The first (if I am remembering correctly) refers to people who remain undetectable without meds. 

Manchester, I hope your next test results are good.  I know that where I go, if someone has a test result that's totally different from the previous one without an obvious explanation, they suspect a mistake and retest immediately. 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline metekrop

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  • Posts: 364
Re: Strange lab results
« Reply #7 on: August 04, 2011, 04:09:35 PM »
You don't need to check his history, he said he wasn't on medication when he said:

My qestion was not for YOU.  :o
Diag on Dec 8, 2000, CD 440 VL 44K, No Meds
Dec/08 - Feb/09 CD< 50 & VL >500k hosp'z.
St. Atripla - July/09 CD 179, VL 197k
Oct/09 CD 300 VL UD Chol 267
Mar/10 CD 468 UD, Ch 220
Aug/10 CD 460 UD, Ch 195
Dec/10 CD 492 UD, Ch 172
Mar/11 CD 636 UD, Ch 201
Aug/11 CD 530 UD, Ch 98
Jan/12 cd 616 UD, ch 189
Jul/12 CD 640 UD, Ch ?
Dec/12 CD 669 Ud, Ch 125
May/7 CD711 Ud, Ch?
Nov/ 22 663 UD, Ch,
April 17 CD 797,
Oct, 14 CD 810 UD

Offline buginme2

  • Member
  • Posts: 3,279
Re: Strange lab results
« Reply #8 on: August 04, 2011, 06:17:41 PM »
I agree with newt.  I wouldn't be too freaked out.  Especially with cd4's as they can bounce around.  I was testing around at 34% for several tests and then all the sudden it jumped to 46%.  Next test it was back to 36%. 

I don't think you should change a course of action based on one test result.  Besides your vl is still low/ud. 
Don't be fancy, just get dancey

Offline Basquo

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Re: Strange lab results
« Reply #9 on: August 04, 2011, 09:33:46 PM »
My qestion was not for YOU.  :o

This is a public forum, so nonetheless it got answered. Try a PM next time. ;)

Offline manchesteruk

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  • Posts: 631
Re: Strange lab results
« Reply #10 on: August 09, 2011, 03:51:10 AM »
Hi All,

Latest lab results are in and my CD4 count was very low again, 247 this time. My doctor wants me to come in and see him because I'm now considered to be below the threshold to start treatment. I must admit I'm still very puzzled by this one, why would I need to start treatment if my viral load is only 55? I suppose I'll have to see what the doctor says anyway, wish me luck!

Chris
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline spacebarsux

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  • Posts: 1,350
  • Survival of the Fittest
Re: Strange lab results
« Reply #11 on: August 09, 2011, 03:56:31 AM »
Good luck Chris. Your situation is the complete opposite of mine. My CD4 is high but so is my VL. CD4-907, VL- 81K.

Has your doctor ever heard of something like this before? It strikes me as very odd.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline buginme2

  • Member
  • Posts: 3,279
Re: Strange lab results
« Reply #12 on: August 09, 2011, 03:59:02 AM »
Hi All,

Latest lab results are in and my CD4 count was very low again, 247 this time. My doctor wants me to come in and see him because I'm now considered to be below the threshold to start treatment. I must admit I'm still very puzzled by this one, why would I need to start treatment if my viral load is only 55? I suppose I'll have to see what the doctor says anyway, wish me luck!

Chris

Your not on treatment yet?  

55 is a low viral load but your cd4 percentage of 18% does show some damage to your immune system.  A viral load of 55 is super low to have without treatment.  How long have you been positive?  Has your viral load always been so low?

I agree, its odd.
Don't be fancy, just get dancey

Offline manchesteruk

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  • Posts: 631
Re: Strange lab results
« Reply #13 on: August 09, 2011, 04:14:27 AM »
About 6 years I've been positive for now. I've never been on treatment no, my viral load has always been below 500 and is usually around 50. This is what is confusing me, my viral load is always around this level without it affecting CD4 count. Very strange.
« Last Edit: August 10, 2011, 07:13:59 PM by manchesteruk »
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline spacebarsux

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  • Posts: 1,350
  • Survival of the Fittest
Re: Strange lab results
« Reply #14 on: August 09, 2011, 04:25:13 AM »
I think its strange enough to warrant re-testing at another lab just to make sure.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Basquo

  • Member
  • Posts: 3,277
Re: Strange lab results
« Reply #15 on: August 09, 2011, 07:53:13 AM »
I think its strange enough to warrant re-testing at another lab just to make sure.

Agreed.

Offline manchesteruk

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  • Posts: 631
Re: Strange lab results
« Reply #16 on: August 09, 2011, 08:09:04 AM »
Well I have exchanged a couple of emails with my doctor today. I asked why he thought my cd4 was so low but my viral load was low as well. His response why thats why I need to speak to him and to make an appointment with him asap. I wasn't particulary worried before, but now I am!
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline Bizzaretwist

  • Member
  • Posts: 14
Re: Strange lab results
« Reply #17 on: August 10, 2011, 06:28:30 PM »
Hi All,

Latest lab results are in and my CD4 count was very low again, 247 this time. My doctor wants me to come in and see him because I'm now considered to be below the threshold to start treatment. I must admit I'm still very puzzled by this one, why would I need to start treatment if my viral load is only 55? I suppose I'll have to see what the doctor says anyway, wish me luck!

Chris

Hey Chris, It is really odd that after 6 yrs of stable numbers you suddenly have these low counts. Did they give you your CD4% on this 247 count? I read your last one was 18%.  Have you noticed a downward trend in your CD4 & % over the years or did this just happen out of the blue? It's my 8 yr anniversary this month, hurray, lol. And my absolute varies a lot (hundreds) and even the % jumps around maybe 5-8%, but yours going from 42% to 18% in one test is a bit extreme. Hope you get some answers soon.
Previously known as: PozinMass
Diagnosed: 8/2003
CD4 = 500-800
CD4% = 32-38  VL=<48
Not on meds yet..

Offline manchesteruk

  • Member
  • Posts: 631
Re: Strange lab results
« Reply #18 on: August 10, 2011, 06:53:52 PM »
Hi there,

Yeah I'm really puzzled by the results myself! I actually went through and tried to find all the lab results I could find and plotted them yesterday.  There are a few missing and I've only included the most recent low result but you get the idea.  The results showing 1200 were actually 1300 and 1400+ but it wouldn't let me plot them that high!  I didn't get a CD4% this time but I will check that when I go to see my doctor, the most recent one was actually 20% not 18% though, I made a mistake there.  It has never usually been below around 40% in the past.



So as you can see it's a pretty huge drop in a short space of time!  My doctor has said he wants to discuss that with me next time I see him so I'm not going to stress about it too much till then.  It appears that the viral load isn't necessarily as important as I thought it was when making the decision to go on meds, certainly not in a situation like this one anyway. I'm preparing myself for the prospect of starting meds anyway because that's what I'm expecting the doctor to recommend with such a low count.  To say it's come as a shock is a bit of an understatement!
« Last Edit: August 10, 2011, 07:04:13 PM by manchesteruk »
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline eric48

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  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Strange lab results
« Reply #19 on: August 10, 2011, 07:39:53 PM »
Hi,

I had a discussion with a specialist the other day about an unrelated issue, but shows some similarity.

I have a sub clinical diabetes where I keep my (sugar) numbers good without medication whereas all other test would otherwise make me a good candidate for medication.
It a combination of lifestyle, diet, and other personal tricks (not the point here). I can keep thing under control for weeks and all of the sudden things go havoc.
When it does I can really feel it and I feel miserable
I was asking this specialist if this was a sign of (diabetes) disease progression and if (diabetes) medication would help.

The point is that he reckons the body (and biological makers) can, for a while, break a steady state equilibrium and go into some kind of storm (for example because of some external, non related condition, such as a flue or even a cold)
The difficulty for him is to sort out whether this is a rupture of steady state that reflects the complexity of biological processes (meds are pointless) or a rupture of steady state that the meds can help.

This analogy to put on the table that there could be a non-HIV related condition that could press down your CD4 count and %.
HIV negative People who suffer from ESRD (a renal condition, if I remember well) or some other immunologically mediated condition (cancer?) can suffer a leucopenia or lymphopenia

It is hard to conceive a rupture of steady state, that would be due to HIV and would not reflect on VL (in a significant manner)

Getting an alternative opinion from an expert virologist is may be some thing you should pursue

even if the numbers raise concern, I would not be too worried at this point and take time to get a full picture first

Cheers!

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline Bizzaretwist

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  • Posts: 14
Re: Strange lab results
« Reply #20 on: August 10, 2011, 09:15:12 PM »
Thanks for sharing that info Chris.  I think Eric could be on to something here. After seeing your graph, I would also be asking the Dr. to start checking for other acute issues.

We all know that in LTNP's some slowly trend downward and some maintain their #'s.  Although I did just watch a medical seminar on Youtube where one researcher said that a majority of controllers/LTNP's etc would eventually need ARV's if we lived longer. But since the numbers go down so slowly it doesn't become relevant. 

On the other hand my Dr. told me about and I have read the paper regarding a LTNP who had <50 VL for I think a decade or so and his CD4's slowly trended down to where he needed meds. But you're right to assume that you shouldn't see such a rapid drop in CD4 & % in just 6 months. So unless your viral control was just suddenly lost because of some mutation or weird HIV change, I would investigate to see if something else is happening and not just let the Dr. put you on meds. Yeah, I know this all sounds great huh, lol. Something new to deal with maybe. Hang in there and keep us posted. Been on here for 8 yrs, I don't post much, more of a reader, but thought I'd chime in here.  Andrew
Previously known as: PozinMass
Diagnosed: 8/2003
CD4 = 500-800
CD4% = 32-38  VL=<48
Not on meds yet..

Offline eric48

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Re: Strange lab results
« Reply #21 on: August 11, 2011, 06:28:14 PM »
Hi,

something else crossed my mind where expert understanding (which I am not) may be required.

I read something the other day that confused me a bit...

I guess in some reading cited in this other interesting article:
http://www.translational-medicine.com/content/pdf/1479-5876-9-93.pdf

where the effectiveness of CD4 count as a 100% reliable marker of disease progression is discussed.

I always though that CD4 T cells and CD8 Tcells where distinct species (like dogs ad cats) (I do understand now that there are sub species into the CD4 and CD8 compartment, that is easy enough to understand, although that was not known until somewhat recently)

What I read (I am almost sure, but can not find a reference) is that Tcells expressing the CD4 protein can also co express the CD8 protein. When the sorting test is done,
if a cell expresses 90% CD4 and 10 % CD8, it will be counted as CD4 TCell and vice versa.) Apparently there can be conditions where the co-expression is closer to a 50-50 and that could fudge the data dramatically.
(but the CD4 + CD8 count would remain stable)

As you already know, CD4 are NOT counted, the lab counts the lymphocytes (that is a count method), then estimates the CD4 ratio, the CD8 ratio and the rest
the CD4 count is then CALCULATED. So if the ratio test is an outlier, it could be very confusing.

I wished I could learn more about these things and be able to do hands-on test myself to better understand these things.

Even an experienced HIV specialist may need to consult other experts in some specific cases. Some doctors just rely on 'guidelines' and do not go beyond.

Just some thoughts

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline spacebarsux

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Re: Strange lab results
« Reply #22 on: August 12, 2011, 07:30:09 AM »
I was just thinking about this. I think Andrew and Eric make some good points.

So, I think may be you need to find out:-

- Can a low viral load such as yours (which is practically undetectable) be the sole cause of such a massive drop in CD4's/percentage or could there be some other factors?


« Last Edit: August 12, 2011, 07:50:43 AM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline newt

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Re: Strange lab results
« Reply #23 on: August 12, 2011, 12:28:07 PM »
The most likely explanation is a duff test or a non-HIV related cause, CD4 T cells are part of a wider set of white blood cells, and a change in the balance of these may affect your absolute count and percentage. A retest is essential. I'd insist on a viral load as well.

However, HIV is a weird beast and if it turns out your count has dropped, you will face a difficult decision re: wait/treat and perhaps tests for HIV viral load elsewhere in the body if you are game for it (lumbar puncture for CSF and jerking off in a jar for semen perhaps). Do pay attention to your CD4%, for 18-20% is in the starting treatment ballpark regardless of other measures.

My money would be on a duff/one-off odd test, but in these kind of situations I am not a betting man.

Good luck.

- matt
"The object is to be a well patient, not a good patient"

Offline eric48

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Re: Strange lab results
« Reply #24 on: August 12, 2011, 06:11:15 PM »
Such strange results make an interesting intellectual challenge and i hope you will keep us posted whatever pans out.

One thing I forgot to say is CONGRATULATIONS ! (I admit it seems odd...)

But controlling the virus for 5 years the way you did really puts you in a special class of people.

Have you by any chance figured out the possible cause for that ?

The article I referenced did suggest a few, some of them quite easily accessible (HLA-B*57 is common and inexpensive);
CCR5-∂32, CCR2-64I is not common practice in clinical care where I live and only reserved for trials. Some doctors argue that it should be offer more broadly in order to screen out a few of us who will jump into test and treat (and bear the load of meds) whereas it could safely be postponed for them?

Just curious....

  Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline Bizzaretwist

  • Member
  • Posts: 14
Re: Strange lab results
« Reply #25 on: August 12, 2011, 10:49:05 PM »
Hi,

something else crossed my mind where expert understanding (which I am not) may be required.

I read something the other day that confused me a bit...

I guess in some reading cited in this other interesting article:
http://www.translational-medicine.com/content/pdf/1479-5876-9-93.pdf

where the effectiveness of CD4 count as a 100% reliable marker of disease progression is discussed.

I always though that CD4 T cells and CD8 Tcells where distinct species (like dogs ad cats) (I do understand now that there are sub species into the CD4 and CD8 compartment, that is easy enough to understand, although that was not known until somewhat recently)

What I read (I am almost sure, but can not find a reference) is that Tcells expressing the CD4 protein can also co express the CD8 protein. When the sorting test is done,
if a cell expresses 90% CD4 and 10 % CD8, it will be counted as CD4 TCell and vice versa.) Apparently there can be conditions where the co-expression is closer to a 50-50 and that could fudge the data dramatically.
(but the CD4 + CD8 count would remain stable)

As you already know, CD4 are NOT counted, the lab counts the lymphocytes (that is a count method), then estimates the CD4 ratio, the CD8 ratio and the rest
the CD4 count is then CALCULATED. So if the ratio test is an outlier, it could be very confusing.

I wished I could learn more about these things and be able to do hands-on test myself to better understand these things.

Even an experienced HIV specialist may need to consult other experts in some specific cases. Some doctors just rely on 'guidelines' and do not go beyond.

Just some thoughts

Eric


Wow Eric, I'm so glad you brought up this protein counting issue.  I recently ran into this somewhere.. and thought to myself maybe that's why my #'s jump around a lot.  Especially when my CD8's go up, the CD4 & % go down a bit, then it reverses, and this dance has been going on since the beginning for me. Amazing how we're all diggin into the journals and sharing can really help put puzzles together.

Chris, Does your Dr. give you the print out of the entire CD4 panel?  I would be very interested to see your CD8 absoulte and % #'s over time to see if there was a major increase (correlation) when your CD4 & % suddenly dropped. Like Eric said this may be a false reading if this is happening because of some other acute condition now going on in your body.

I know we're all just speculating here and if you don't want me or anyone else getting into your other lab #'s I understand. I'm sure your Dr's will be looking into it all. I think we all just want to be sure all your bases are covered.  ;D
Previously known as: PozinMass
Diagnosed: 8/2003
CD4 = 500-800
CD4% = 32-38  VL=<48
Not on meds yet..

Offline eric48

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Re: Strange lab results
« Reply #26 on: August 13, 2011, 07:28:13 PM »
when my CD8's go up, the CD4 & % go down a bit, then it reverses

While this is not related to the OP, please allow me to try to explain why this should be expected.
lymphocytes are COUNTED, then proportion of CD4( aka CD4 %), proportion of CD8 (aka CD8 %) (and consequently non CD4-non CD8, aka 'the rest') are evaluated. Obviously CD4% + CD8 % + 'the rest'% = 100 %.
The rest is mostly made of NK (natural killers, if my memory is correct, do not sue me if I am wrong).
Should 'the rest' remain stable, any up fluctuation in CD4 % is compensated by down fluctuation of CD8%.
Since CD4 count and CD8 count are in fact Calculated by multiplying the total lymphocytes by the respective proportion, it also reflects on nominal counts.

Back to this thread, now...

It is not because I am getting confused on some concepts that I would like to get other people confused as well.

My only point is that even a specialized HIV doctor may need to look beyond the  CD4saurus Rex & HIV VL-lociraptor  and get further data or expert opinion before making the (drastic) decision of starting meds as there is a chance that this could be an unneeded (yet taxing) intervention.

The likelyhood that this 'strange' CD4 labs is an outlier is also very high. The retest may very well reflect that. In the absence of other data I would reluctantly bet on that. If I where living in an ideally free world I would insist on getting more data (as suggested in the article I referenced earlier). Unfortunately I live in socialized health care where strings can be highly difficult to pull.

I hope these comments will be of help to the OP.

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline eric48

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Re: Strange lab results
« Reply #27 on: August 13, 2011, 07:55:13 PM »
The following article is just one (among others) that suggests non-HIV-related, transient, up or down regulation of markers (typically CD4 and CD8) of immune function. (EBV infection, bacterial, etc...)
Once the condition is resolved (naturally or after medical intervention), then the immunogramm should get back to normal, HIV not being the culprit...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2912311/pdf/1471-2334-10-205.pdf
Lymphocyte and monocyte flow cytometry immunophenotyping as a diagnostic tool in
uncharacteristic inflammatory disorders

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline manchesteruk

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Re: Strange lab results
« Reply #28 on: August 14, 2011, 05:13:48 PM »
The most likely explanation is a duff test or a non-HIV related cause, CD4 T cells are part of a wider set of white blood cells, and a change in the balance of these may affect your absolute count and percentage. A retest is essential. I'd insist on a viral load as well.

However, HIV is a weird beast and if it turns out your count has dropped, you will face a difficult decision re: wait/treat and perhaps tests for HIV viral load elsewhere in the body if you are game for it (lumbar puncture for CSF and jerking off in a jar for semen perhaps). Do pay attention to your CD4%, for 18-20% is in the starting treatment ballpark regardless of other measures.

My money would be on a duff/one-off odd test, but in these kind of situations I am not a betting man.

Good luck.

- matt


Hi Matt,

I did have a retest and again the CD4 count was around the 250 range, although these two tests were within a week of each other. 

Also thanks to everyone else for your input I will have a read of all the links provided. My doctor has been involved in HIV patient care since 1986, and is an executive member of the British HIV association so I do trust his judgement on matters like this.  I will however definitely ensure that all other non-HIV related causes have been considered if he decides I have to go down the meds route.  I don't want to have to start meds if it's not necessary.

Thanks again everyone,

Chris
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline eric48

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Re: Strange lab results
« Reply #29 on: August 14, 2011, 08:35:38 PM »
Hi,

Well thank you for sharing your story (and concerns). it may be of help to someone else (a lot of people read through this forum even if they do not post...)

On one hand I feel a bit frustrated because I may have lost $ 50 (I did bet on transient drop). The one week delay does not rule out the transient drop completely but rules out a lab error.

On the other I have learned a few new (exciting) things with this thread and I hope you will keep us posted with the diagnostic/decision/outcome.

If the disease has been deemed 'manageable', then some interesting 'management' issues will come up and, while medical decisions are the reserved turf of MDs, the way things are been 'managed' in one country and another can differ and help us.

Since I have been infected, (Aug 2009), I have already 4 or 5 counts of mismanagement (wrong diagnosis included...). As clinical care of HIV is being transferred in some countries to GPs, it is reassuring to learn that you are under good care.

I also have a doctor sitting our the local 'board'. It's a blessing ... a double edged sword, too. My doctor, for example, has referred me to (obviously) very competent specialists in various hospitals, but, never at the one Hospital that his Alma mater is competing with...

Your history and mine being different, there is little I could learn from yours (and vice versa)... Yet, it is the 'management' side of it that draws the attention (unfortunately, nonone with a personal history similar to yours has so far participated into this thread. too bad...

I have learned something new, though... The last article I referenced has an obscure sentence:

... source of valuable clinical information for patients with uncharacteristic inflammatory symptoms, guiding further diagnostic testing and providing a rationale for ex juvantibus therapy.

The term ex juvantibus refers to the process of making an inference about disease causation from an observed response of the disease to a treatment. It does not necessarily connote a fallacy.
http://en.wikipedia.org/wiki/Ex_juvantibus

What a funny word !

The CD4 count (and percentage) has dropped. the fact can not be denied, now.

The cause is not formally identified.

The decision tree is fairly simple:
A - start meds right away
B - wait 1 or 2 months (with close CD4 monitoring) and not investigate a non -HIV cause (hoping it resolves on its own...)
C - wait 1 or 2 months (with close CD4 monitoring) and investigate a non -HIV cause

If (or when) HAART is started, 2 outcomes are expected:
1- a VL drop (which, with a baseline of 55, could hardly be called a drop...)
2- a CD4 restoration (immunologic response)

If the immunologic response is positive that would mean
A - HIV was the cause (hence the Ex_juvantibus thing...)
B - HIV was not the cause but the true cause has resolved
(the dynamics of the restore may help sort out A from B).
And you might be a good candidate for CD4 managed treatment interruption, if life time meds is a hardship for you.

If the immunologic response is negative that would mean:
- you are in trouble and investigating alternative cause will be back on the table

At any rate, it is good to hear you are under premium clinical care, and I dearly hope this matter will resolve favorably

Cheers!

Eric

PS: War is too important to be left to the generals (G. Clemenceau - who won a war...)
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline manchesteruk

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Re: Strange lab results
« Reply #30 on: August 15, 2011, 04:09:44 PM »
Hi Eric,

Thanks for your post.  Unless my doctor is adamant, I am coming down on the side of some further testing and close monitoring of my CD4 counts for the next couple of months.  He may well already have a good idea of what the cause of the drop may be or might have come across a similar case in the past. I suppose I will have to wait until Wednesday to see what the outcome is.  Wednesday can not come soon enough now that's for sure!

Thanks again,

Chris
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline manchesteruk

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Re: Strange lab results
« Reply #31 on: August 17, 2011, 11:29:11 AM »
Well I'm none the wiser today after my visit.  My doctor informed me he'd like me to start medication which I was expecting. I told him I'd like to wait for a few months first with some close monitoring of my counts in the meantime which he had no problem with.  I'll be going back in a couple of weeks for another CD4 and viral load along with resistance tests etc.  Then back in a few months with one further set of labs before I go for a visit to discuss medication.  It will be interesting to see what happens to my labs over he next few months but I'm not exactly hopeful to be honest. He had no real explanation for why my CD4 count plummeted but viral load stayed low as well which is what I was hoping for to be honest.
Diagnosed 11/05

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Offline spacebarsux

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Re: Strange lab results
« Reply #32 on: August 17, 2011, 11:48:18 AM »
Hey Chris, has your doctor seen something like this before?
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline manchesteruk

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Re: Strange lab results
« Reply #33 on: August 17, 2011, 11:54:15 AM »
Hey Chris, has your doctor seen something like this before?

Hi,

I did ask that question and he did say he'd treated a patient who had a viral load of around 2000 who needed to start treatment but no one as low as mine.  I also asked about my large fall in CD4 count in such a short period of time and he said he had no explanation for that because I've been fine health wise.  I have more questions than answers at the moment to be honest!

Chris
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline newt

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Re: Strange lab results
« Reply #34 on: August 17, 2011, 11:59:10 AM »
The trouble is, few doctors and patients know fully what the natural history of HIV looks like. This kind of sudden drop may be common, just never captured. The pattern in the past was perhaps get ill, see doc, have low CD4 count and higher viral load by then. I think you have made a fair call and a good plan.

Perhaps loss of the elusive LTNP option is indeed a loss, but avoiding a higher risk of cancer, infections etc that goes with a depressed CD4 count is deffo worthwhile in my book, even with lopsided results.

Interested to know your CD4%.

Let us know what happens.

- matt
"The object is to be a well patient, not a good patient"

Offline spacebarsux

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Re: Strange lab results
« Reply #35 on: August 17, 2011, 12:04:25 PM »
I am still fairly new to understanding all of this, but I do know that less than 40 copies of the virus on standard assays is considered undetectable, so a vl of 55 causing a sudden drop in CD4s just flies in the face of my understanding of HIV disease progression. However, I'm no expert or doctor.

All the best. :)
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline newt

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Re: Strange lab results
« Reply #36 on: August 17, 2011, 02:39:06 PM »
Cos HIV is a wily bastard and not all HIV and the cells it attacks are in your blood. Without treatment some pople might have extensive viral replication in their brain and spinal chord and score a perfect "undetectable" on their bloods. On the other hand CD4+ T cells migrate and might just be hiding out eg in the spleen. Hard to say. Like I said, wiley.

- matt
"The object is to be a well patient, not a good patient"

Offline eric48

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Re: Strange lab results
« Reply #37 on: August 17, 2011, 07:30:39 PM »
Hi,

Do I take it right that the average CD4 count was 900 (ballpark) and % 40 % which means that over the last years the total number of
lymphocytes (all subsets) was 900 / 0.4 = 2250.

At recent dreading CD4 count is 250 and CD4 % is 20% hence total number of lymphocytes (all subsets) is 250 / 0.2 = 1250

That is a 50 % drop in the total number of lymphocytes in peripheral blood.

lymphocytes in peripheral blood are only the top of the iceberg, representing 2 to 5 % of the total number. (opinion differ among authors)

They are gone on vacation ! and you are talking millions of cells.

no one in this forum came forward with a similar 'case' and neither has your doctor.

It is interesting to learn how such a situation can be managed.

Will he call other doctors to the rescue ?

One more thing about 'management' ... I do not know about the UK but, here, I think the 'standard' timing for blood test for people not under treatment is  every 3 months.

Depending on where you live doctors may have a different leeway. Here , we have pretty Stalinist rules (and if not followed strictly, insurance coverage may be withdrawn...).

Maybe you have not placed all dots on your nicely designed chart...

Patients in your situation are very rare and I take from:

http://jid.oxfordjournals.org/content/197/1/126.long

that (quote):

Fewer than 1% of chronically HIV-infected individuals are capable of maintaining clinically undetectable plasma HIV RNA levels (<75 copies/mL) in the absence of antiretroviral medications [1-4].
We and others have been systematically recruiting these “elite controllers” to characterize fully the correlates of protective immunity.

We and others...

So, there is a handfull of specialists in this world who have collected expertize that, I, am sure they would be more than happy to share.

Putting together a detailled account of your case on one hand and putting together a list with a number of such 'experts' (email addresses and street addresses are usually easy enough to identify) on the other
could allow you to draw the attention of a few and identify 'similar' cases and get good advice.

While it may take quite a bit of your time and effort, this is your health and may be one way help the case and your doctor as well.

My experience is that even most eminent researchers will grant you a response if you can catch their attention.

One tricky 'management' question: in the quasi absence of a free VL how can a resistance profile be done...

Please keep us posted on further developments.

Cheers

Eric

PS : I am still betting these $ 50 that this is a transient ;-)
« Last Edit: August 17, 2011, 07:36:26 PM by eric48 »
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline sam66

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Re: Strange lab results
« Reply #38 on: August 17, 2011, 11:15:43 PM »
Cos HIV is a wily bastard and not all HIV and the cells it attacks are in your blood. Without treatment some pople might have extensive viral replication in their brain and spinal chord and score a perfect "undetectable" on their bloods. On the other hand CD4+ T cells migrate and might just be hiding out eg in the spleen. Hard to say. Like I said, wiley.

- matt


   Yep, I thought I read somewhere some time ago, only a tiny % of the virus is in the blood. something like
2-4 %
         
Am I correct in thinking this
december 2007 diagnosed +ve ,

Offline sp2323

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Re: Strange lab results
« Reply #39 on: August 17, 2011, 11:25:16 PM »
Id do a retest and not worry

Offline manchesteruk

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Re: Strange lab results
« Reply #40 on: September 11, 2011, 05:32:46 PM »
Hi All,

Just thought i'd post a quick update to let you know where I am at the moment.  I had another test recently and got the results back last week.  My CD4 count has risen slightly to 398 but the percentage is still 20% so no major change really.  My viral load was 150 so still very low there as well.  My doctor is still recommending treatment and would like me to start soon.  I have another set of bloods to do and an appointment in November, I'm expecting to start medication then. 

My doctor is happy to wait until that long but also made a point of telling me not to leave it too long because CD4 recovery can be limited if you start too late.  November really would be a better time for me to start because of current commitments but I certainly don't want to jeopardise my health by doing so.  I suppose I can just monitor my health and as a long as I am feeling fine i'll wait until November.

Chris
Diagnosed 11/05

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Offline newt

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Re: Strange lab results
« Reply #41 on: September 11, 2011, 07:05:11 PM »
OK, hope you can get your head round the kinda sudden, perhaps unexpected, drop in your CD4 count, tho I reckon it ain't that rare really, just beforehand, years back, people didn't get diagnosed early enough for it to notice.

- matt
"The object is to be a well patient, not a good patient"

Offline Since2005

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Re: Strange lab results
« Reply #42 on: September 12, 2011, 09:52:49 AM »
Hi Manchesteruk,

Thanks for sharing the result. According to the graph, your med stats that you have plotted on this thread, the earliest records for CD4 and VL counts show June of 2006 (I assume that is your first med stats/dx timing, not sure if that's when you got infected with the virus). Hope you don't mind sharing how long you have been poz. Regardless, your numbers look awesome and you are living healthy!

As for your current result, I think your result is still pretty good. You have improved from 265 to 398. Well, may be not so much considering the huge fall on CD4 count and percentage from your previous results, but to me, the newest result still reflects a good improvement on CD4 numbers by 133 within a short period of time. Look at the positive side, I see from your last 2 labs,  your number on CD4 is it’s not going downwards which is a good sign, VL is still very low by far, your CD4% is consistent ( I ain’t any expert but many says that has a major role to determine one’s immune stat). Granted, its not 40% like it used to be but I agree with what Newt said “..just beforehand, years back, people didn't get diagnosed early enough for it to notice".

It's a bummer on the LTNP issues, and it seems like your are handling it well. At least, you know your stats and as you said you would make a decision based on your next result/trend etc. I wish you the best with the next lab and whatever decisions you make in the near future.
« Last Edit: September 12, 2011, 11:07:10 AM by Since2005 »

Offline eric48

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Re: Strange lab results
« Reply #43 on: September 13, 2011, 07:44:53 PM »
I am still betting these $ 50 that this is a transient.

Since your VL is so low you can still expect that your CD4 have retained their origninal turn over rate (half life or life expectancy, as you wish)

(in un-infected people, typically 6 months, in HIVERs under active infection, down to 1 day)

you can not rule out disease progression (hence your doctor advise)
you can not rule out a CD8 expansion (due to an other condition) that is restricting both CD4 count and percentage. Once the cuse for the CD8 expansion ceases, it will take a few months to return to normal.

And I would still be working on getting access to an expert opinion in such an unusual case before initiating meds at this time

Cheers!

Eric

NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline Since2005

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Re: Strange lab results
« Reply #44 on: September 14, 2011, 01:02:35 AM »
Since your VL is so low you can still expect that your CD4 have retained their origninal turn over rate (half life or life expectancy, as you wish)
(in un-infected people, typically 6 months, in HIVERs under active infection, down to 1 day)

What did you mean by this?  Curious? Can you explain?

you can not rule out disease progression (hence your doctor advise)
you can not rule out a CD8 expansion (due to an other condition) that is restricting both CD4 count and percentage. Once the cuse for the CD8 expansion ceases, it will take a few months to return to normal.

And I would still be working on getting access to an expert opinion in such an unusual case before initiating meds at this time


I am definitely not an expert but I would wait to see what happens I think and hope his CD4 goes up. Again you mentioned a good point as you said his doc indicated  that with HIV you never know. that's the idea that I am getting lately.

Offline buginme2

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Re: Strange lab results
« Reply #45 on: September 14, 2011, 03:26:08 AM »
What did you mean by this?  Curious? Can you explain?



When someone has HIV the virus kills CD4 cells so the body's response is to make more CD4 cells and the cycle repeats.  It gets to the point where a person who has HIV is turning over CD4 cells every day as the body tries to make more cells to make up for the ones that are killed off.  In a person who is not infected with HIV heir CD4 cells can live for months or years (for memory cd4 cells), a person with HIV CD4 cells may only live for 1 day.  Since the body is continually producing new cells errors begin to develop and the body eventually cannot keep up and their will be a collapse in immune cells and then that's all she wrote.

The previous poster was stating that since the op's viral load was so low it is possible that his turnover rate may not be that high....hard to know though.
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Offline spacebarsux

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Re: Strange lab results
« Reply #46 on: September 14, 2011, 03:46:14 AM »
Yeah, what Bugsy said and also the fact that in HIV+ people CD8 cells are higher than usual. CD8 cells are also disease fighting T-Cells.

A normal CD8 cell count is about 300–1,000 cells, although some sources cite higher upper count, ie.1100. CD8 cell counts usually rise over time in HIV+ people, but why and how these increases relate to the health of your immune system is not well understood.

The ratio of CD4 cells to CD8 cells is often reported. This is calculated by dividing the CD4 value by the CD8 value. In healthy people, this ratio is between 0.9 and 1.9, meaning that there are about 1 to 2 CD4 cells for every CD8 cell. In people with HIV infection, this ratio drops dramatically, meaning that there are many times more CD8 cells than CD4 cells.


http://i-base.info/qa/748
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline manchesteruk

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Re: Strange lab results
« Reply #47 on: November 10, 2011, 02:08:06 PM »
Hi All,

A quick update from me and it's not great news unfortunately!  Had my latest set of labs done and i've had the CD4 results back which are 261 15%.  Not had the viral load back which I suspect will still be low but pretty irrelevant in this situation.  I must have a high viral load somewhere even if it's not in my blood.  I know i'm in a bit of a risky position at the moment with results like that.  I've got an appointment on the 21st and will decide what meds and start at that point. 

Having had a quick read it sounds like Atripla isn't an option for me at the moment.  My job involves shift patterns next year which include starting at 6am and others finishing at 11pm so not sure that's a suitable solution.  Not sure what other first line options are available on the NHS but the most important thing for me is to keep the side effects down if possible.  Any advice and experience of other options would be great if anyone can help.

Speak soon,

Chris
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline Ann

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Re: Strange lab results
« Reply #48 on: November 11, 2011, 09:53:23 AM »
Sorry to hear about that, Chris.

Reyataz/Norvir/Truvada is a first-line NHS option. That's my current choice for when I start (yes, I'm still treatment naive) because the Sustiva in Atripla isn't suitable for me either. Good luck.
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Offline newt

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Re: Strange lab results
« Reply #49 on: November 11, 2011, 05:53:39 PM »
But, although it's one more tab, darunavir has less side effects.

Either works.

If you can hack 2 x day Manchester is still offering raltegravir (Isentress) 1st line which has metabolic advantages but is less convenient.

I agree with your analysis of efavirenz as being less than optimal for your schedule. Be robust about this.

- matt
"The object is to be a well patient, not a good patient"

 


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