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Author Topic: Have I won the lottery?  (Read 1790 times)

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Offline YellowFever

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Have I won the lottery?
« on: March 16, 2014, 09:13:55 AM »
My latest labs have shown a continued drop in VL despite not taking any meds. CD4s went down too but my doc is dismissing that as 'regular fluctuation'. The resistance test shows that I have got wild type so its not some 'less virulent but resistant to 3TC' strain. Doc says I got some special gene that's supressing the virus and I probably wont need meds for a very long time. Yay!. Although I am abit worried that my doc is basing his advice about me taking meds on VL instead of CD4. I am personally not keen to start unless I have to. Does anyone else think its a good idea to delay taking meds because of low VL?
« Last Edit: March 16, 2014, 09:17:04 AM by YellowFever »
08/2010 HIV- 08/2012 HIV+
10/2012 CD4 415(15%)
04/2013 CD4 457(15%)
10/2013 CD4 520 (20%) VL 650 (wtf?)
02/2014 CD4 410(20%) VL 390 (yay!)
08/2014 CD4 580(?%)

Offline Ann

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Re: Have I won the lottery?
« Reply #1 on: March 16, 2014, 10:01:28 AM »
YF, I've moved your thread into the Treatments Questions forum as it is the more appropriate place for it.

Have you read the stickied thread entitled Experts debate when to start HIV therapy at the top of this section's index page? Check it out and read the article linked to there.

There are many different opinions out there regarding when it's best to start - and for someone like you there are even bigger question marks hanging over the issue.

If you are a Long-Term Non-Progressor (LTNP) or even an Elite Controller, you can enrol in a study that looks at people who fall into these categories. Many scientists believe that LTNPs and Elite Controllers may hold some of the keys to unlocking a cure.

Personally, I was what is termed a Long Term Slow-Progressor. This means that while I always had a VL that was somewhere between 6,000 and 30,000 or so, for a very long time I also had CD4s well over 500. I had hiv for fifteen years before I started meds. I would have like to have started maybe a year or two sooner than I did, but I was very happy that I had as many med-free years as I did.

Of course when I was first diagnosed the newer meds weren't available and the meds that were available had more side effects, and some had long-term side effects that some of our Long Term Survivors still deal with today, despite being off the older meds for years.

If I were you, I'd do a lot of research on what it means to be a LTNP or Elite Controller (google them), I'd look into the possibility of joining a study instead of going on meds, and once I understood a bit more, I'd have an in-depth discussion with my doctor about it all.

With the numbers you have, you do have the luxury of time to thoroughly investigate all your options.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline eric48

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Re: Have I won the lottery?
« Reply #2 on: March 16, 2014, 02:31:55 PM »
Welcome you are

Jeaaaalous i am

Good doc you have

Lower your guard you won't

Mobile.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)

Online Jeff G

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Re: Have I won the lottery?
« Reply #3 on: March 16, 2014, 02:36:19 PM »
Welcome you are

Jeaaaalous i am

Good doc you have

Lower your guard you won't

Mobile.eric

Oh I get it now ... You're Yoda right ?

Offline YellowFever

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Re: Have I won the lottery?
« Reply #4 on: March 16, 2014, 06:37:57 PM »
If you are a Long-Term Non-Progressor (LTNP) or even an Elite Controller, you can enrol in a study that looks at people who fall into these categories. Many scientists believe that LTNPs and Elite Controllers may hold some of the keys to unlocking a cure.

I thought my specialist would start recommending me these trials. He did mention something but wasn't pushing it so I thought maybe I'm not the ideal Elite Controller (are they UD?).

But thanks for the link, gave me some perspective on this!
08/2010 HIV- 08/2012 HIV+
10/2012 CD4 415(15%)
04/2013 CD4 457(15%)
10/2013 CD4 520 (20%) VL 650 (wtf?)
02/2014 CD4 410(20%) VL 390 (yay!)
08/2014 CD4 580(?%)

Offline eric48

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Re: Have I won the lottery?
« Reply #5 on: March 17, 2014, 09:53:42 AM »
Trials and studies are different things

Trials : they will do something with you (aka intervention) , e.g. a med or placebo given my mouth

Study: they will collect blood and play with it: this does not affect your body, it just takes some of your time. I am in one, so I get to go to a lab on a regular basis for blood samples: it is like donating blood or other generous things you can do

If there is a researcher or a Univ. doing a study (not a trial) it is a good idea to help. I am learning a lot also by talling to the researchers, which is a bonus

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 tednlou2

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Re: Have I won the lottery?
« Reply #6 on: March 17, 2014, 10:40:23 PM »
I'm curious how treatment recommendations change, based on a very low vl, yet meeting the markers to initiate treatment?  Well, at least U.S. guidelines and I thought below 500 was becoming the recommendation in other countries. 

If your CD4 is below 500 and CD4% is 20%, then does the low vl really change things that much?  That is a question and not a statement, because I have no idea.

Offline eric48

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Re: Have I won the lottery?
« Reply #7 on: March 18, 2014, 09:56:40 AM »
If your CD4 is below 500 and CD4% is 20%, then does the low vl really change things that much?

Come on... You can do better than that !

Why is it some docs on the pannels DID NOT want to put a STRONG recommendation for initiation when CD4 > 500 ?

They want to evaluate the benefits and risks for their patients... and not have their opinion dictated by some AI software, somewhere.

At this point of time, YellowFever CD4 count is more than sufficient to minimize the risk

The VL going down may be a marginal artifact ...

But % going up from 15 % (twice) to 20 % (twice) is good enough to show that the immune systmen is unlikely to be deteriorating at this time

Threshold are one thing, trends another, and Doc is right to try to see what pans out

I hope YF will keep posting in this forum

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 YellowFever

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Re: Have I won the lottery?
« Reply #8 on: March 18, 2014, 12:04:09 PM »
I'm curious how treatment recommendations change, based on a very low vl, yet meeting the markers to initiate treatment?  Well, at least U.S. guidelines and I thought below 500 was becoming the recommendation in other countries. 

If your CD4 is below 500 and CD4% is 20%, then does the low vl really change things that much?  That is a question and not a statement, because I have no idea.

Spot On! That was my original question in the first post. I was abit apprehensive that the doctor based his advice about taking meds on VLs AND CD4 data rather than the standard CD4 data alone. So I would appreciate some thoughts on this. Has anyone had such a low VL and low CD4 count that nearly got them AIDS?

Eric48, the reason why my CD4s jumped from 15% to 20% is because I moved to another country (and hence another clinic). So the lab machine used to analyze those numbers maybe using different methodologies. The first two CD4% are from the first clinic, and the second two are from the second clinic so in that sense, both are consistent. But you are still right to say that my immune system isn't deteriorating.

My next check up is in 6 months time (either because the Doc is that relaxed, or just planning to save some money on behalf of the NHS). Maybe things will become clearer with 3 VL data points...
08/2010 HIV- 08/2012 HIV+
10/2012 CD4 415(15%)
04/2013 CD4 457(15%)
10/2013 CD4 520 (20%) VL 650 (wtf?)
02/2014 CD4 410(20%) VL 390 (yay!)
08/2014 CD4 580(?%)

Offline eric48

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  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Have I won the lottery?
« Reply #9 on: March 18, 2014, 04:53:48 PM »
Of course, it is recommended that you have test labs in same lab and even at same time of day... If you 've moved location, then, of course...

Well... I could go into the technicalities, but ...

Immunologically, you are in a green zone. Not the greenest, but still
Virologically, you are in such a green zone that you may want to wear sun glasses. I mean: less than 400: this is virologic control by all means.

Have you won the lottery ?

The question is naive and funny, and the answer not less.

Have you won the lottery ? YES

Your virus in not less virulent than that of others which is why you will still be playing safely (as you should always have had)

So what makes the VL so low ? Well the most likely scenario: your immune system mounted an attack against the virus by generating antibodies randomly: we all had that
Luckily yours found a combination that matched the virus before it had a chance to mutate. May be the virus did mutate but the immune system responded. In the arm race, the virus (which usually wins) is not winning... yet ...

A new mutation and a missed response and you're out. Shit happens... but not always and not on good people

The neutralizing antibodies are mounted in most of us, but not in sufficient quantity and matching combination to work efficiently and for ever. I have them, you have them. Yours match the virus in its current state better than mine does.

In order to mount this response efficiently, the immune system needs to expand the CD8 compartment. The CD8 compartment is inflated, thus the CD4 compartment is compressed (at this time). This is most likely going to go on , fluctuating, until... it does not

So why is you CD4 dept compressed ? Because Mother nature is at work

Let her work !

Everyday, actively, you immune system is generating new combinations that may match the current virus better

Every day, but, not that much, at such a low VL, the virus is trying the same: generating a mutation that would escape (take over)

Who is the winner ?

Obviously you as a patient.

Do you need help to control the virus ? and what for ?

You still want to keep a close eye on it.

Learn your meds options, etc. check that VL closely. and be ready to the chemical fight in case the immunologic fight turns bad.

You will have plenty of time to build up a chemical (pharmaceutical) response

So yes you won the lottery... So why not take a big breath and say yes, someone HAS to win the damned lottery.
and I am one of these

If I were in yours shoes, a Primary Controller, I 'd keep a closer look at that VL.

Depends where you live...

Where I live, you DO NOT need a script to get a VL.

I pay fullfare : $30 ! A bargain !

You may want to call some independent local lab and ask them if you can have a VL without script.

If they say yes, then , you are no more dependant on Doc

Most likely, they may not give you the price over the phone... They will have you come in, fill the paper work, then hand you the bill. Should not be that different from mine

It is worth it

Rather than worry in front of computer/google, get those extra VL test done at your own pace

A complete VL+CD4+CD8 is $100

Besides, I would be interested to know if, in socialized health care like the NHS, there is still enough room for manoeuvre

Hope this helps a bit

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 AusShep

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Re: Have I won the lottery?
« Reply #10 on: March 18, 2014, 06:17:04 PM »
I'd probably hop on meds given these numbers or if the CD4 number or percentage drops when monitoring closely.

My reasoning is the large studies showing increased morbidity and mortality for all reasons for those with CD4 count below 500, even with viral suppression.  Your numbers already put you at stage 2 by CDC definitions (CD4 200 - 499, and CD4 % between 14 and 28).  CD4 % below 14 is also categorized as AIDS now.  It's just a label, but the numbers don't lie as far as risk in the different HIV stages.

I personally wouldn't play the science experiment angle, since you may have excellent CD4 recovery after letting things get worse, but you may not.

Whatever your decision, you're in pretty good shape right now.

Offline YellowFever

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  • Posts: 163
Re: Have I won the lottery?
« Reply #11 on: March 18, 2014, 07:39:47 PM »
Thanks for all the perspectives here. I appreciate it. I am probably going to ask my doc if he can approve an additional VL test in between the biannual visits. And then judge from there. In terms of playing a science experiment, I have no qualms. If they DO want my blood for studies and etc, I would gladly donate pints of it.
08/2010 HIV- 08/2012 HIV+
10/2012 CD4 415(15%)
04/2013 CD4 457(15%)
10/2013 CD4 520 (20%) VL 650 (wtf?)
02/2014 CD4 410(20%) VL 390 (yay!)
08/2014 CD4 580(?%)

Offline eric48

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  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Have I won the lottery?
« Reply #12 on: March 18, 2014, 07:41:38 PM »
Hi, I was writing this as your were posting... It is a bit out of sync, but, there you go...

Stage A2 to be precise... There are 9 stages (A1 to C3) and A2 is the second most begnin. So this is not like Stage 2 in cancers  ;)

You can not get less than A1

The 15% have been measured in the bush, the 20, in the UK... So it seems YellowFever prefers to rely on the later ...

One true question when changing locations is : will I be well treated in my new location ? (namely the UK) or will the difference between UK and US guidelines affect my health

Alternatively: is the NHS taking care of my health or of its pennies ?

Large studies are interesting for your average Hiver, but a Primary Controller is by nature an outlier. Can anyone point out an additionnal mortality risk in Primary Controllers ? (at ca. CD4 500 !?)

One of the question is the Original Post was:
Does anyone else think its a good idea to delay taking meds because of low VL?

Well , unless you are >50y., I , do think its a not a bad idea to delay at this time, as your doctor does

Wait another 3-6 months, VL/CD test,  and re-assess

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 AusShep

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Re: Have I won the lottery?
« Reply #13 on: March 18, 2014, 07:49:49 PM »
Thanks for all the perspectives here. I appreciate it. I am probably going to ask my doc if he can approve an additional VL test in between the biannual visits. And then judge from there. In terms of playing a science experiment, I have no qualms. If they DO want my blood for studies and etc, I would gladly donate pints of it.

Sorry my bad, that's not the science expirement I was talking about.  I just meant not being in a study/trial and letting things go without good monitoring just to see what happens vs. making changes to improve things. I'd give all the blood a study wanted too.


Offline Ann

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Re: Have I won the lottery?
« Reply #14 on: March 19, 2014, 08:05:48 AM »
Sorry my bad, that's not the science expirement I was talking about.  I just meant not being in a study/trial and letting things go without good monitoring just to see what happens vs. making changes to improve things. I'd give all the blood a study wanted too.



People in studies (and trials) are often more closely monitored than patients who aren't in studies.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline AusShep

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Re: Have I won the lottery?
« Reply #15 on: March 19, 2014, 09:12:50 AM »
People in studies (and trials) are often more closely monitored than patients who aren't in studies.

Yeah, I was initially referring to Eric's monitor and pay for labs yourself science experiment approach, poor choice of words.  The more data we get the more it looks like earlier treatment at higher CD4 levels makes sense, especially with the newer less toxic meds, but only more time and studies will tell.

Offline Ann

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Re: Have I won the lottery?
« Reply #16 on: March 19, 2014, 09:23:27 AM »
Yeah, I was initially referring to Eric's monitor and pay for labs yourself science experiment approach, poor choice of words.  The more data we get the more it looks like earlier treatment at higher CD4 levels makes sense, especially with the newer less toxic meds, but only more time and studies will tell.

Thank you for the clarification. I did wonder if I misunderstood you.

For the record, I don't agree with a lot of Eric's recent advice. He often talks in riddles and refuses to divulge much about his situation, he only gives us little bits of the picture. It seems to me as though (looking at the incomplete picture that is forming) Eric rarely sees his doctor, but orders labs off his own back to interpret himself, and I'm also starting to wonder if he doesn't order his own meds from somewhere too. It's difficult to tell going by his convoluted, riddle-filled posts. His recent constant promotion of his Twitter account doesn't help matters much either.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline eric48

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Re: Have I won the lottery?
« Reply #17 on: March 20, 2014, 05:17:27 PM »
I Not doctor not giving advise

I in Kommunist country

I V. & K. / UD  / C4=1300

Suggestion to get test at one's cost is good solution if NHS not offering 3 months testing while not on meds

I keyboard challenged

Hope this helps

Mobile.eric

Modif. To add : cost of my suggestion = $ 70
Less than cost of worrying
« Last Edit: March 20, 2014, 05:20:55 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 Ann

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Re: Have I won the lottery?
« Reply #18 on: March 21, 2014, 06:28:38 AM »

I in Kommunist country


Since when is France communist? Don't answer that - frankly I'm not all that interested and don't want to hijack this thread any further than it already has been.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

 


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