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Author Topic: My Clinic Didn't Genotype Me  (Read 3774 times)

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Offline Central79

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My Clinic Didn't Genotype Me
« on: June 27, 2007, 03:31:51 PM »
I went for a clinic appointment a week or so a go. I was pleased with my results, but made the point of asking about whether they'd genotyped my virus when I was newly diagnosed, as I'd read a couple of threads on here about the importance of that happening early if possible - before resistant virus gets archived in resting T cells in my body.

The doctor couldn't find any results in my file, and said that I should ask them to draw for it at my next set of bloods, in 4 months.

I initially didn't care too much - because I was pleased with my other results. But now I'm gradually feeling more disappointed and angry. I feel like I did my bit by having the good sense to go and get tested early on, but whilst I was dealing with my diagnosis, they fucked up something that should just be protocol.

So I'm wondering several things: should I NOT wait, and get drawn for this ASAP, and then go for my regular bloods in another 4 months or should I wait? Should I write a letter of complaint? Should I be worried about this? I don't even know how much of a disadvantage it places me in - what's the chances of picking up any resistant strain now, as opposed to when I was first diagnosed?

I know all this stuff really doesn't matter until I go on meds - but it is undermining my confidence. I mean, they should really just have a checklist/protocol to run down for newly diagnosed people. Genotype: check!
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline milker

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Re: My Clinic Didn't Genotype Me
« Reply #1 on: June 27, 2007, 03:36:57 PM »
What? You have to ask "them" to draw for it? You ask and they draw? Are you going to go yourself to the company that does the geno/pheno yourself? Who's going to pay for it? Why is the doctor not writing that down? Maybe it doesn't work the same way where you live, but only my doctor is allowed to ask for specific drawns..

It's possible that it is a money problem.. geno/phenotypes are expensive to do, and usually done by external companies.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjasô

Offline Oceanbeach

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Re: My Clinic Didn't Genotype Me
« Reply #2 on: June 27, 2007, 03:45:44 PM »
My Doctor asked the Staff Nurse once to genotype for me once and the nurse commented that my T-cells were too high and Medi-Cal (Medicaid in California) would not pay for it and the blood samples would be discarded.  Ask your nurse if that is the case in your state.  Have the best day
Michael
(who was in the room at time of request)

Offline allanq

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Re: My Clinic Didn't Genotype Me
« Reply #3 on: June 27, 2007, 03:50:57 PM »
Matt,

From your post, it seems that you have not been on any HIV meds. Without the meds, there's no pressure to suppress a strain of the virus that may be resistant to a particular med. Although it's important to get a genotype before starting meds, I don't think it matters if you have the genotype right after the diagnosis or wait until just before starting meds.

(If I'm wrong about this, I'm sure someone will correct me.)

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline SASA39

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Re: My Clinic Didn't Genotype Me
« Reply #4 on: June 27, 2007, 04:10:05 PM »
2 types of resistence test : genotyp and phenotyp resistence.
So it could be genotyp for starting , you do not have to be on meducations to proceed that test.
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline Miss Philicia

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Re: My Clinic Didn't Genotype Me
« Reply #5 on: June 27, 2007, 04:36:54 PM »
The tests are expensive and, at least initially, many private insurers would limit you to something like 3 of these tests per year.  I don't know if they still do that or not.  And while I know many here have recommended having these tests done up front upon diagnosis is this really accepted protocol in the medical community?  While I agree personally that it should be the accepted practice it may simply be the case that the patient needs to force the issue.

If you're that concerned with it Matt why not insist that you want the test done now?  I don't know how healthcare works in the UK with this, but at least where I go it would not be any issue.
"Iíve slept with enough men to know that Iím not gay"

Offline keyite

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Re: My Clinic Didn't Genotype Me
« Reply #6 on: June 27, 2007, 05:47:42 PM »
As far as I understand it, it is protocol in the UK to perform a resistance test at diagnosis and then again just before going onto meds (assuming those two events are fairly far apart in time). So they have messed up.

Having said that, I'm not really sure I understand why it's useful at the point of diagnosis. Sure, very reassuring to have this information from a patient point of view, but doesn't seem that obvious from a medical standpoint. By the time a mutation shows up in a resistance test it is surely too late to knock it back?

At my clinic they did perform a genotype plus a 'virtual' phenotype when I was diagnosed. I seem to recall it took at least six weeks before the results were back. I was hugely relieved when it came back that I was fully susceptible to all current meds.

I think you should insist they perform one. Whether you go back now or wait until next scheduled draw depends entirely on how strongly you feel about it.

Offline Miss Philicia

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Re: My Clinic Didn't Genotype Me
« Reply #7 on: June 27, 2007, 05:54:16 PM »
Yes, it seems as though it would be most logical to do one before starting meds, but not necessarily at diagnosis unless of course your initial cd4's are so low you need to start treatment right away.  Or am I missing something here? 

And six weeks for results?  The last time I had it done it didn't take more than 10 days.
"Iíve slept with enough men to know that Iím not gay"

Offline milker

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Re: My Clinic Didn't Genotype Me
« Reply #8 on: June 27, 2007, 06:03:59 PM »
I think Matt read somewhere on those forums that the geno/pheno should be done at diagnosis in case a strain already invaded a cell and wouldn't be necessarily detectable outside of a cell.

Seemed strange when I read that.., so Matt if you remember that link that would be great.

To me, if a strain has invaded a cell, then it's already making babies, so that strain WILL be found during the genotype analysis. I would agree with Philly in thinking that phenotype done at diagnosis may be for people that will start meds immediately. It could also be done to compare the evolution of the mutations between diagnosis being time T, and T1 being 6 months or a year or years later. I think my doctor did a mutation test for the latter purpose.

My geno/pheno results took more than 15 days to come back, those are done outside of the normal hospital lab. The CD4/VL are done at my hospital.

Matt, if it can help you feel better about what are your options in case you need to go on meds, get the genotype done now; I must agree that knowing the exact nature of my mutants and what was the expected resistance on different regimens was a relief for me.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjasô

Offline aztecan

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  • Posts: 5,429
  • 29 years positive, 57 years a pain in the butt
Re: My Clinic Didn't Genotype Me
« Reply #9 on: June 27, 2007, 07:15:31 PM »
I don't see the advantage of having a genotype or phenotype done before going on meds.

I can understand the need for the tests if starting meds or if you need to switch because your numbers are going south on an existing regimen, but intially, right after diagnosis, I just don't see the advantage.

I still have never had either test done, but I was infected long ago when the chance of catching a resistant strain was less likely - or even possible.

So, what is the advantage of having these tests done at the time of diagnosis? I want to make sure people here aren't missing out on something they should have.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline appleboy

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Re: My Clinic Didn't Genotype Me
« Reply #10 on: June 27, 2007, 08:14:53 PM »
If your VL is low a genotype cannot be done.  You need enough virus to be able to do the test.  If your meds are working then I would doubt there would be in resistance that would show in the genotype test. 
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
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Offline Miss Philicia

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Re: My Clinic Didn't Genotype Me
« Reply #11 on: June 27, 2007, 11:28:54 PM »
Matt's not on meds yet so that is irrelevant.
"Iíve slept with enough men to know that Iím not gay"

Offline Central79

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  • Posts: 527
Re: My Clinic Didn't Genotype Me
« Reply #12 on: June 28, 2007, 03:43:23 AM »
This is the thread where I read the information about getting tested right off the bat:

http://forums.poz.com/index.php?topic=10551.0

I've copied and pasted the post here, it's from the Yahoo poz health group:

Folks, speaking as an HIV doc, I can tell you that people SHOULD get a resistance test when they are first diagnosed--even if they won't start ARVs for years, or never. This is because the mutations sort of "fade" over time. The current test technology is not sensitive enough to see mutations lurking in only a small number of virus particles, but those mutations can emerge quickly in the face of the wrong medicines. Dr. Susan Little at UCSD has shown that some mutations can "fade from view" over 2 years, but they are still hiding out and can affect the success of starting treatment.
 
I teach my residents that a good history is at least as important, if not more important, as a genotype test. If someone tells me they were taking a drug consistently in the past but still had detectable virus, I'm going to get a good idea of what resistance I'm dealing with, even if their genotype is "clean."
 
Even though getting a genotype test is a good idea when you are diagnosed, it does not happen in many cases--mostly because HIV care is not an official medical specialty. Many people get care from providers who are not certified by AAHIVM, which is an independent academic society that gives an exam to test providers' knowledge. AAHIVM-certified doctors have to pass an exam testing their HIV knowledge. That's is as good as we're likely to get for having a specialty designation.

Doing a resistance test when you're diagnosed positive has been the standard of care at SFGH Ward 86 for many years; our IAS and national guidelines now also suggest providers do this.
 
 
Richard A. Loftus, MD
Davies Medical Center
45 Castro Street, Suite 325
San Francisco CA 94114
415-863-3366
fax 415-552-4565

I'm worried that I won't have enough virus now, and that the mutations will all have "hidden out" in my system. I guess the implication could be that you have an NRTI resistant (because that doesn't take much) virus that then means you have duo-therapy or mono-therapy until they pick it up. I suppose worst case that failing to suppress the virus quickly could lead to mutations against other classes of drug.

There's a section on drug resistance in the "Before You Start Treatment" part of the Lessons section. I wonder if there should be a mention for people just diagnosed?

I had a look through the British HIV Association guidelines, but there's no mention - it's more of a provision document anyway. If newt or anybody can show me where it's in UK guidelines, as I think it must be, I think I'm going to write a letter of complaint.

Matt.
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline madbrain

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    • My personal site
Re: My Clinic Didn't Genotype Me
« Reply #13 on: June 28, 2007, 04:33:25 AM »
If your VL is low a genotype cannot be done.  You need enough virus to be able to do the test.  If your meds are working then I would doubt there would be in resistance that would show in the genotype test. 


How low is too low to genotype ? I had a VL < 700 when I first tested poz, but was still able to be genotyped.

Offline Central79

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  • Posts: 527
Re: My Clinic Didn't Genotype Me
« Reply #14 on: June 28, 2007, 04:42:57 AM »
I don't know - I just went and had it done.

I had a VL of 46,500 in January so I'm sure that it's worth doing. They only do my VL once a year as I'm not on meds. I just get the impression that the higher the VL, the more chance there is of picking up resistant strains.

Anyway, done now.
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline newt

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Re: My Clinic Didn't Genotype Me
« Reply #15 on: June 28, 2007, 05:08:36 AM »
From the BHIVA 2006 guidelines on treatment of HIV infection in adults:

"Testing for transmitted resistance is recommended in all newly diagnosed patients. This includes patients with either acute seroconversion or established infection. The most appropriate sample is the one closest to the time of diagnosis and this should preferably be tested at the time of initial presentation. " [my bold]

Get it done.

Having said that, waiting 12 or so weeks ain't gonna make a huge amount of difference.

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

Offline newt

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Re: My Clinic Didn't Genotype Me
« Reply #16 on: June 28, 2007, 05:10:05 AM »
Direct link to BHIVA guidelines recommendation on resistance testing:
http://www.bhiva.org/cms1191568.asp#1191589
"The object is to be a well patient, not a good patient"

Offline Central79

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Re: My Clinic Didn't Genotype Me
« Reply #17 on: June 28, 2007, 05:35:32 AM »
Cheers Matt - you're a star.

I went and got it done this morning.
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline LT

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Re: My Clinic Didn't Genotype Me
« Reply #18 on: June 28, 2007, 07:18:11 AM »
Different doctors have different opinions on this.  For example, when I asked, mine said that the test was useless unless I failed to completely suppress the virus on an ARV regime.  And I never have, on any of the combos I've been on, since Viral Load test became routine.  Of course I probably did grow resistant to AZT back when I did mono-therapy in the late 80's.

Mind you, I was diagnosed the first year a test became available, and we think I probably got infected in the first year after the CDC (US Centers for Disease Control) first reported this disease in the WMMR (Weekly Morbidity and Mortality Report).  Back then these tests weren't even an option.

Also, it depends on the medical system where you live.  While my regular testing is covered by the provincial health care plan, genotype and phenotype testing are not.  It would be a fairly expensive, out of pocket expense for me.

There may even be a localized element to the decision.  For example if resistant strains are more common in your area, genotyping/phenotyping might be common practice.

Quote
I just get the impression that the higher the VL, the more chance there is of picking up resistant strains.

The only way your going to pick up resistant strains, is if you have unsafe sex.

While I suppose that it is theoretically possible that the classic Darwinian biology of viral replication (ie natural errors occur during duplication, and some of those mutations will prove beneficial to the species), could produce a drug resistant strain, it is highly unlikely.  Without the presence of drugs for which the virus could become resistant, it is doubtful that the drug resistant strain would flourish and become prevalent.

Offline newt

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Re: My Clinic Didn't Genotype Me
« Reply #19 on: June 28, 2007, 07:38:10 AM »
Quote
The only way your going to pick up resistant strains, is if you have unsafe sex.

The most likely way you will acquire resistant strains of HIV is being on treatment but not taking your drugs on time in the propoer way.

Most cases of apparent reinfection have been shown to be explainable by emergence of a second strain of HIV that was present from the beginning but dominated by wild (or another) type (of) HIV.  This provides a alternative explanation to reinfection for emergence of resistant strains of HIV when not on treatment -  changes in the genetic balance of the viral population of an HIV infection.  This said, there are a handful (a single digit number) of confirmed cases of resistant HIV being acquired by reinfection.

Recent research shows that resistant strains of HIV are detectable in semen of people just diagnosed and/or recently infected with HIV but not in their blood, pointing to initial infection as a probable source of resistant mutations (because recently infected people who don;t know they have HIV are a major source of onward transmission).  This reinforces the value of resistance testing on diagnosis. << see Drug-Resistant HIV in Semen Stirs Concerns (Kenyon Farrow writing for AIDSmeds).

The purpose of resistance tests on or as soon after initial infection is to establish whether your mix of HIV contains key mutations that cause resistance.  It is important to do this as soon as possible after infection, because many of these mutations will fade into the background as wild-type HIV, which is generally stronger, becomes dominant. 

Clearly, the value of resistance testing on diagnosis decreases the longer the time between infection and the test, and they are not foolproof.  But British guidelines still include resistance tests as a standard of care (1) on diagnosis (2) again before starting treatment.

- matt
« Last Edit: June 28, 2007, 07:43:46 AM by newt »
"The object is to be a well patient, not a good patient"

Offline blondbeauty

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Re: My Clinic Didn't Genotype Me
« Reply #20 on: June 28, 2007, 08:21:26 AM »
I did not get a resistance test at my hospital (I had it at the clinic were I was diagnosed but never went to get the results), and my meds seem to be working.  ;)
Good luck!
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline David_CA

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Re: My Clinic Didn't Genotype Me
« Reply #21 on: June 28, 2007, 10:20:46 AM »
My Dr. ordered both types (geno- and phenotye) tests after my initial diagnosis.  He reason is what Matt mentioned in his initial post - archiving.  Unless I'm mistaken... wild-type HIV will generally be the prevalent one in an individual not on meds.  It is "... the typical form of an organism, strain, gene, or characteristic as it occurs in nature".  When there's nothing to suppress wild-type HIV (like HAART meds), there is no reason for resistant strains (mutant strains of HIV) to be present in great numbers.  That does not mean that mutant HIV isn't present; it's jut not the most common version of HIV in an individual.

He mentioned this to me at my last appointment.  In five months, I still had a VL of around 700 after an initial drop.  What this means (my interpretations) is that I could have been infected by an individual resistant to at least one of the meds I'm on (Atripla).  My first geno- and phenotype tests showed no resistance, but that does not mean that there weren't any 'traces' of resistant HIV.  This would also indicate I've been HIV+ for a few years... long enough for the wild type to become prevalent again. 

The point of this is that, according to my Dr. and to what I've read, resistance testing is useful close to starting meds and as close to initial infection as possible.  It gives a more accurate view of resistance that is present before mutations occur taking it back to wild-type HIV.  My insurance did not cover these tests, as they were not necessary for 'diagnostic purposes'.  They would have covered them if I had been starting treatment immediately.  Perhaps many Dr.s don't order them early on because of the financial aspects.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Longislander

  • Member
  • Posts: 2,486
Re: My Clinic Didn't Genotype Me
« Reply #22 on: June 28, 2007, 11:00:53 AM »
after reading about this on AM about 6 months ago,  I asked my doc to do a geno/pheno and they told me they already did a geno/virtual pheno when I first started going to them. She showed me the results that I had no signs of resistance and I was quite relieved.

I'm glad you went and got it done Matt
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline aztecan

  • Member
  • Posts: 5,429
  • 29 years positive, 57 years a pain in the butt
Re: My Clinic Didn't Genotype Me
« Reply #23 on: July 02, 2007, 10:34:29 AM »
Thanks Newt, et al.

I now see where this testing would be beneficial for those recently diagnosed. Normally, I just thought about it for those starting treatment or who have a failing regimen.

Its a bit late for me to get the test, I think. Too many years and too many years undetectable.

But I will recommend it for the others.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

 


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