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Author Topic: Phenosense Test. Not Good News  (Read 3840 times)

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Offline TakingAChance

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  • Posts: 42
Phenosense Test. Not Good News
« on: March 26, 2011, 12:52:50 AM »
OK Folks. Got the shit scared out of me today. I have been waiting to get this test result. I was wrong on my reported Cd4 count. it's 529. not 580. My vl. is still 5000. But my Phenosense test came back with bad news. The Doc said i was infected with 2 resistant strains of HIV. he was real stern today. Asked me if I had taken HIV med before and if this was my first time etc? I had no idea what he was getting at. Then he said I had 2 different strains which meant I was super infected, which to him meant I am fucking with out using condoms. He lectured me on using condoms and then told me he only had 1 drug therapy to offer me. If I screw it up by not taking them and become resistant I am out of the med game until they come up with something else later. My Virus replication Capacity is 56%. I'm trying to read this Phenosense test with the help of the web site here but still not sure what I am reading. Does Sensitive mean I can't take the drug? I know Resistant does. he said he could off me a 3 drug combo. One is in Phase 11 of the experimental stages. He wants me on Emtricitabine and tenofovir( truvada) and Isentress and I don't know what the 3rd is right now? maybe he meant the two in one in Truvada?  Anyway, he lectured me on adherence of course. Because he warned if you have trouble with this with have nothing to offer you for a while?

Man do I get a break anywhere with this HIV news or not? I just found out I'm positive, lost my home, lost my job and now he's telling me I have limited choices for medication. I feel like a got a HUge Gut punch today. Just numb from head to toe. If any of these med's don't work then I sit on the bench and wait and watch it replicate I guess? I'm not giving up, I just thought I would have much better odds then these. Does anyone have any experience with the Phenosense test. I would like to understand this medical jargon better. Freaked out, cried and vented it out to 3 people so far. I know I'm not dying and that this is 2011 not 2001, but I'm still in a whirlwind about these results. i feel like I fucked Up Big Time. Crushed for the moment. Thanks.
Fasten Your Seat Belts...It's going to be a Bumpy Ride!

Offline Assurbanipal

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Re: Phenosense Test. Not Good News
« Reply #1 on: March 26, 2011, 07:34:30 AM »
Hi

That sounds like rather an odd way for the doctor to interact with you.... Perhaps he is not the right doctor for you?  It is important to have a doctor you are comfortable with.

But just wondering if you have found the site lessons on resistance?  The chapter starts here  http://www.aidsmeds.com/articles/Resistance_7509.shtml  and later as you click through there's a page on how to read each of the common tests.

Or if you post your test results, sometimes people here can hellp you read them and talk through the drug choices that are available. 

There's a lot all coming at you at once right now, but it looks like you have a pretty healthy immune system.  So you can give yourself some time to understand your options before you jump into anything.

Be well

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline newt

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Re: Phenosense Test. Not Good News
« Reply #2 on: March 26, 2011, 08:19:36 AM »
Hello

The question of having 2 strains is moot. A Phenosense GT test will show the variants of HIV you have at the time of the test. No-one starts with just 1 kind of HIV, it's a mix, and this can change as the virus population establishes its own evolutionary balance. Introducing drugs into this ecology may well unsettle a previously clear picture and let resistant types come to the fore, which can look like 2 types of HIV. [added >>] Or you may just have had an odd mixture of HIV variants from day 1.

Lecturing is not helpful. Speculation on reinfection, which is very difficult science is not helpful, especially as this is rare.

More likely you had undiscovered baseline resistance to start with. A replication capacity of 56% suggests a heavily treated type of HIV, so I am gonna guess whoever had your HIV before you had done lots of treatment/not taken their meds (or the person before him/her...).

It seems unlikely you have only Truvada +  Isentress and/or an experimental drug as an option. If you can upload the report or list the mutations I can comment in more detail.

Even with extensive resistance I suggest you look forward to your treatment succeeding.

The clinical expectation for multi-class resistance should be the same as everyone else, eg achieving a viral load of 50 or less. It might take more drugs, or new drugs, or old drugs or unusual mixes of drugs, but it is achievable. The guy who made the headlines for having a resistant-to-everything type of HIV in New York a while back did well on a fairly standard combination.

Hope this helps.

- matt
« Last Edit: March 26, 2011, 08:23:05 AM by newt »
"The object is to be a well patient, not a good patient"

Offline newt

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Re: Phenosense Test. Not Good News
« Reply #3 on: March 26, 2011, 08:37:22 AM »
To add

On the report SENSITIVE means the drug works, RESISTANT means it doesn't and PARTIALLY SENSITIVE somewhere in between.

The report does not tell you which drugs you can and can't take. This is a bit more complicated. The options available depend on the precise set of mutations your HIV exhibits and how these interact with a particular choice of combination

- matt
« Last Edit: March 26, 2011, 08:42:44 AM by newt »
"The object is to be a well patient, not a good patient"

Online Miss Philicia

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Re: Phenosense Test. Not Good News
« Reply #4 on: March 26, 2011, 11:30:35 AM »
Oh wow, I agree about the doctor's reaction/interaction -- rather disturbing.  And I also highly doubt that you have one option plus a clinical trial option.  There are all sorts of (possible) potential red flags here with the doctor.

ps: I have a very complicated multiple-drug resistant virus and I am doing fine on treatment.  Yes, my doctor has stated that if my current regimen gets fucked up my next option would be more difficult, but I have definitely have further options.  Not to mention for at least the past decade I've always been on my last or next-to-last option, and I'm still kicking.  In fact my lab results are marvelous.

So chin up sweetpea, don't get down about this.  But do evaluate your doctor's performance as this is now three of his here that find his session with you really questionable.
"Iíve slept with enough men to know that Iím not gay"

Offline TakingAChance

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Re: Phenosense Test. Not Good News
« Reply #5 on: March 26, 2011, 02:32:08 PM »
To add

On the report SENSITIVE means the drug works, RESISTANT means it doesn't and PARTIALLY SENSITIVE somewhere in between.

The report does not tell you which drugs you can and can't take. This is a bit more complicated. The options available depend on the precise set of mutations your HIV exhibits and how these interact with a particular choice of combination

- Matt

Hi Matt,

Thank You for answering all that for me. It made me feel a hell of a lot better. I will try to upload the sheet he gave me yesterday. I am glad that Sensitive means the drugs work. Because I had alot of those. I am going to ask my Dr. for another appointment next week to discuss this last appointment. I don't want to jump the gun, but I didn't like how I felt about that side of it when I got home either. Both were disturbing to me. What was said, implied and so on. I'm not afraid to speak to people one on one, so I am going to make sure I clearly understand and confirm that what I heard yesterday is what was said yesterday. After a while I realized I was in shock and maybe have misinterpret some of his talk? Not that parts about the strains but his actions and so on.  I appreciate all the comments though. I know I am not dying or going to die. I'm ready to handle what this Virus has to throw at me. I think my immune system is doing a good job right now. If all of this is true, it's fighting it since I believe that I was infected last Dec2010?Jan2011. I will see what I can do. meanwhile, I am very grateful that you responded to me. Thanks Justin
Fasten Your Seat Belts...It's going to be a Bumpy Ride!

Offline newt

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  • the one and original newt
Re: Phenosense Test. Not Good News
« Reply #6 on: March 26, 2011, 02:38:22 PM »
Your viral load is weedy, a decent combo* will kick it dead in a matter of days.

- matt


* carefully selected to reflect resistance test results obviously
"The object is to be a well patient, not a good patient"

Offline TakingAChance

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  • Posts: 42
Re: Phenosense Test. Not Good News
« Reply #7 on: March 26, 2011, 02:45:20 PM »
Your viral load is weedy, a decent combo* will kick it dead in a matter of days.

- matt


* carefully selected to reflect resistance test results obviously
Thanks..I hear what you're saying and that's my belief too.
Fasten Your Seat Belts...It's going to be a Bumpy Ride!

Offline TakingAChance

  • Member
  • Posts: 42
Re: Phenosense Test. Not Good News
« Reply #8 on: March 26, 2011, 02:54:44 PM »
Hi

That sounds like rather an odd way for the doctor to interact with you.... Perhaps he is not the right doctor for you?  It is important to have a doctor you are comfortable with.

But just wondering if you have found the site lessons on resistance?  The chapter starts here  http://www.aidsmeds.com/articles/Resistance_7509.shtml  and later as you click through there's a page on how to read each of the common tests.

Or if you post your test results, sometimes people here can hellp you read them and talk through the drug choices that are available. 

There's a lot all coming at you at once right now, but it looks like you have a pretty healthy immune system.  So you can give yourself some time to understand your options before you jump into anything.

Be well

A

Thank You. I read the link and that helped alot too. I had only read the parts about Phenosense before. I didn't read the links above until now. It helped as well and You did too. Thank U. Justin
Fasten Your Seat Belts...It's going to be a Bumpy Ride!

Offline buginme2

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Re: Phenosense Test. Not Good News
« Reply #9 on: March 26, 2011, 03:18:13 PM »
My Virus replication Capacity is 56%

>>>I've never seen this before.  What does this mean?
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Online Miss Philicia

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  • celebrity poster, faker & poser
Re: Phenosense Test. Not Good News
« Reply #10 on: March 26, 2011, 03:33:10 PM »
My Virus replication Capacity is 56%

>>>I've never seen this before.  What does this mean?

http://www.aidsmeds.com/articles/hiv_replication_capacity_1667_18149.shtml
"Iíve slept with enough men to know that Iím not gay"

Offline TakingAChance

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  • Posts: 42
Fasten Your Seat Belts...It's going to be a Bumpy Ride!

Offline newt

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  • the one and original newt
Re: Phenosense Test. Not Good News
« Reply #12 on: March 26, 2011, 07:50:20 PM »
Quote
My Virus replication Capacity is 56%

means...

Wild type HIV is benchmarked at 100% replicative capacity (ie 100% efficient at copying itself). Mutated virus, and some other types of virus eg a strange mix, have (generally) less or (rarely) more ability too reproduce.

Specifically in this instance, replicative capacity of 56% means the virus is about half as effective as "normal" HIV at reproducing itself properly. In short, mutations in this HIV complicate treatment options but make the virus much less effective at reproducing.

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

Offline TakingAChance

  • Member
  • Posts: 42
Re: Phenosense Test. Not Good News
« Reply #13 on: March 29, 2011, 08:44:08 AM »
means...

Wild type HIV is benchmarked at 100% replicative capacity (ie 100% efficient at copying itself). Mutated virus, and some other types of virus eg a strange mix, have (generally) less or (rarely) more ability too reproduce.

Specifically in this instance, replicative capacity of 56% means the virus is about half as effective as "normal" HIV at reproducing itself properly. In short, mutations in this HIV complicate treatment options but make the virus much less effective at reproducing.

- matt

Hi Matt. I'm not sure how to upload a document on here? I did scan my pheno test for you to have a look at? Any suggestions? Thanks Justin
Fasten Your Seat Belts...It's going to be a Bumpy Ride!

Offline SunnyFlorida

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  • Posts: 176
Re: Phenosense Test. Not Good News
« Reply #14 on: March 29, 2011, 06:51:31 PM »
Hello,

You can upload the image to www.imgur.com and then use the link they supply. You want the one for forums, it starts with [IMG]. Hope this helps!

Offline TakingAChance

  • Member
  • Posts: 42
Re: Phenosense Test. Not Good News
« Reply #15 on: March 29, 2011, 06:54:56 PM »
Hello,

You can upload the image to www.imgur.com and then use the link they supply. You want the one for forums, it starts with [IMG]. Hope this helps!

Thanks. I will remember that next time. Have a great day man. Justin
Fasten Your Seat Belts...It's going to be a Bumpy Ride!

 


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