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Author Topic: Thinking about starting on raltegravir + abacavir + lamivudine, any thoughts...  (Read 6384 times)

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Offline Souledout

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Hi, I’ve not posted on here for some time. I was diagnosed about 5 years ago, not started treatment yet as my cd4 is usually over 1000 and viral load usually only a few hundred (lucky me hey). Made the decision it’s probably right for me to start, it’ll put my mind at rest and stop nagging negative thoughts.

Any thoughts on the combo listed above? Not sure if they’re the names of the drugs in America. In my mind all treatment is toxic and awful - I’m working on that.

Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline Almost2late

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Yes indeed, lucky you.. not sure where you are but my preference is an all in one pill like Triumeq which has the same components as what you described except it swaps Tivicay for Raltegravir.. I just find it more convenient and cheaper.

Offline Souledout

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I’m in the uk so treatment is free buuuuuut the nhs is moving away from single pills due to cost. So it’ll be once a day but a few pills, otherwise I’d definiteoy be after a single pill.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline Jim Allen

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Yeah UK is moving away from single pills to save cash. Page 12 on this slide shows some of the alternatives and switching options for NHS England http://www.ukcab.net/wp-content/uploads/2017/04/Use-of-generic-medication-a-commissioning-perspective.pdf

Jim
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Offline harleymc

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Raltegravir's gentle as is lamivudine, I haven't tried abacavir so I have no knowledge of it.

There are two dosages of raltegravir. 400 mg and 600 mg.

The 600 mg can be taken as two tablets once a day, the 400 mg is one pill twice a day.  That's the only drawback of raltegravir 400 mg the twice a day dosing.

Offline Mightysure

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I wouldn't want to do anything I'd have to take twice daily, but if it works for you, then by all means.

Offline Souledout

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Thanks for the replies. The nhs will be offering the two tablets, once a day, from the new year. That’s when I’m thinking of starting. New year, new start etc, plus I take my time to get my head in gear about big decisions like this.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline harleymc

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Really it's not a massive decision, it's just swallowing a couple of pills.
People pop pills all the time, vitamins, for pain relief, antacids, recreationals or just for a sugar rush. Don't overthink it.

HUGS

Offline Souledout

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Oh I take things but it doesn’t matter if I miss the odd one of those...

And unfortunately I overthink EVERYTHING :(
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline eric48

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Looked at the kind of enviable numbers you have and was wondering what kind of benefits are you expecting from taking medication...
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline Souledout

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This has been my problem. If my numbers were worse my hand would be forced somewhat and I’d just start. If I had been an elite controller rather than a regular controller I’d also find the decision easier.

My viral load is high enough to cause me concern and I’m mostly looking for peace of mind. Even low levels of the virus cause damage and inflammation long term, I could be causing myself problems further down the line. I’ve had trouble relaxing during sex as it’s a very present thought, this has caused relationship problems and at times has completely destroyed my sex drive - I’m single now and don’t feel confident dating partly because of that. I’m often exhausted, this could well be down to the virus. Finally, I want to take back control of my health while it is in good shape rather than waiting (with my life on hold) for my body to lose its edge it obviously has over the virus.

I’ve just had a recent set of test results by the way, cd4 at 1104 and viral load at 554, which is great but, for me, I want to reclaim my life and stop worrying so much, I feel like I’m in limbo right now.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline eric48

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In the context of the rare individual with a profile like yours, once may want to ask:

Do We Need Triple Therapy for Everyone for Life?

This is exactly the topic of a IAS 2017 session here:
http://programme.ias2017.org/Programme/Session/8

you may want to dowload the slides of the first presentation :
http://programme.ias2017.org/PAGMaterial/PPT/70_81/Bitherapies%20IAS%20SHORT%20.pptx

even see the conference here:
https://youtu.be/fpMOpAHn8S4

this should be of interest to you. If you need further help, send me PM
« Last Edit: October 08, 2017, 06:25:46 am by eric48 »
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline Souledout

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That sounds really interesting but I don't think it would do wonders for my peace of mind! I worry enough as it is and to be on a different treatment plan from everyone else probably isn't the best idea for me. Thank you for the info though, it's always interesting to have a read of new research.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline Jim Allen

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Hi

Look reading the thread it sounds like you have been overthinking this and also hiding behind the "good" numbers to delay treatment. Last thing you need to do is start over-complicating this thinking process even more.

Work with your doctor and use an approved treatment, your doctor will also know what other medical needs (if any), and resistance profile you have and thus the best treatment options that would suit you. Nobody here can recommend a treatment for you. 

Truth is it is up to you when to start treatment, however I will say numbers don't tell the full story of the damage being done to you in the short and/or run long or even possible permanent damage by the uncontrolled HIV. In part the better outcomes and lower mortality changed the recommendation to start sooner with treatment vs delay no matter what the numbers say.

Anyhow I do wish you luck, keep working with your doctor my only advice is don't wait too long. I played that game and it does not pay off well.

Jim
« Last Edit: October 09, 2017, 02:57:46 pm by JimDublin »
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Offline Souledout

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Exactly. This is why I’m startimg. My doctor has suggested the above drugs and I’m planning on starting when I can get the one a day option just after Christmas. I’ve not had much feedback on the drugs from here but from what I’ve gathered they seem pretty good.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline PozLawyer

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  • Bipolar HIV+ former DC BigLaw attorney
Exactly. This is why I’m startimg. My doctor has suggested the above drugs and I’m planning on starting when I can get the one a day option just after Christmas. I’ve not had much feedback on the drugs from here but from what I’ve gathered they seem pretty good.

Congrats on being an elite controller.  If you are being offered treatment, take it!  Like JimDublin said, there is still damage being done to immune system even if VL and CD4 numbers are good.

There is (or was) controversy over whether elite controllers should be taking meds.  The US DHHS guidelines today are firm on this--all HIV+ patients regardless of elite control status should be on meds (one reason is that it can give your immune system a rest while the meds handle the work).  But the medical community also acknowledges that (at least as of 2014), there were differing opinions in EU, and that cost is always an issue.  I do not know where EU and/or NHS stands on this issue today, but if you are being offered treatment, you should take it!

The regimen you suggested is good.  I used to be on it except with Truvada instead of abacavir/lamivudine.  Only switched because of convenience reasons when Triumeq came out and because, at that time, raltegravir was formulated as 2x per day.  There are some people that are allergic to abacavir--there is a simple genetic test (cheek swab) that you can do to determine whether you are likely to have this reaction.  I assume they have already done this with you, but if not, you are asking to check for the presence of the HLA-B*5701 allele.  If present, abacavir is contraindicated.

Here's a link to commentary about elite controllers and whether to take meds.  The source is from University of California San Francisco--the Harvard of medical schools on the west coast of USA.
http://hivinsite.ucsf.edu/InSite?page=md-expert-deeks2

And here's a link to the allergic reaction possibility (small) to abacavir. Again, simple genetic screen to rule it out.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3000684/

And here's a link to current US DHHS guidelines saying everyone (including elite controllers) should start treatment:
https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv/10/initiation-of-antiretroviral-therapy
Follow me on Twitter at @PozLawyer https://twitter.com/PozLawyer.

Diagnosed August 2014
Tivicay + Descovy, VL UD, CD4 fluctuates b/w 400-600
Married, serodiscordant.  Husband is negative.
Avid gamer (Gaymer!).  https://daggr.net/members/3696/

Offline eric48

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Concerning proven 'Elite controllers' the DHHS guidelines has too many ifs and shoulds and maybes to be considered as a definitive opinion.

That being said, meds that are in one dosing/day are much nicer that twice daily.

Mine can be taken either way and I did both: once daily is, by far, easier

With current dosing RAL + ABC + 3TC is 800+600+300 mg a day. i.e. 1700 mg and this is not aspirine, so the choice of meds should be considered carefully
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline PozLawyer

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  • Bipolar HIV+ former DC BigLaw attorney
I’m in the uk so treatment is free buuuuuut the nhs is moving away from single pills due to cost. So it’ll be once a day but a few pills, otherwise I’d definiteoy be after a single pill.

To the OP: the treatment combo your doc proposed to you is supported by DHHS guidelines even if it is not on the "preferred" list.  You will just take more pills per morning than someone taking the "preferred" Truvada/Descovy+Raltegravir.

"When compared with Recommended and Alternative regimens, Other regimens may have reduced virologic activity, limited supporting data from large comparative clinical trials, or other factors such as greater toxicities, higher pill burden, drug interaction potential, or limitations for use in certain patient populations.
If HIV RNA <100,000 copies/mL and HLA-B*5701 Negative:
ATV/c or ATV/r plus ABC/3TC
EFV plus ABC/3TC
RAL plus ABC/3TC"

The only difference between the OP's regimen and the "Recomended" regimen is that the "recommended" regimen uses Truvada/Descovy + RAL rather than ABC/3TC

"Raltegravir plus either tenofovir disoproxil fumarate/emtricitabinea (AI) or tenofovir alafenamide/emtricitabine (AII)"

And make sure you are HLA*B-5701 neg.

Concerning proven 'Elite controllers' the DHHS guidelines has too many ifs and shoulds and maybes to be considered as a definitive opinion.

That being said, meds that are in one dosing/day are much nicer that twice daily.

Mine can be taken either way and I did both: once daily is, by far, easier

With current dosing RAL + ABC + 3TC is 800+600+300 mg a day. i.e. 1700 mg and this is not aspirine, so the choice of meds should be considered carefully

The guideline is the very first sentence and is quite clear: "Antiretroviral therapy (ART) is recommended for all HIV-infected individuals, regardless of CD4 T lymphocyte cell count, to reduce the morbidity and mortality associated with HIV infection (AI)." There is no exception in the guidelines for elite controllers, and the section on elite controllers does not recommend a different approach.  The discussion about elite controllers are not guidelines--just discussion about the current state of the research. 
« Last Edit: October 10, 2017, 08:10:06 am by PozLawyer »
Follow me on Twitter at @PozLawyer https://twitter.com/PozLawyer.

Diagnosed August 2014
Tivicay + Descovy, VL UD, CD4 fluctuates b/w 400-600
Married, serodiscordant.  Husband is negative.
Avid gamer (Gaymer!).  https://daggr.net/members/3696/

Offline Jim Allen

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Guys.

Lets keep the elite controllers conversation & guidelines between yourself or at least separate from the OP's thread. I do not want us to get off track.

The OP has stated he will be starting treatment and is in nation with treat all regardless of numbers policy. So lets keep it focused on that and as per ask what treatment would he would have access to.

The treat all in the UK is per WHO guidelines and the Dublin agreement, this and the treatment options is outlined by the BHIVA. Its is also standard in the UK for resistance testing to be done and to check for hypersensitivity before treatment. So the OP does not need to be worrying about that.

Thank you for the cooperation

Jim 

https://forums.poz.com/index.php?topic=51849.msg719533#new
« Last Edit: October 10, 2017, 08:48:27 am by JimDublin »
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Offline Jim Allen

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Exactly. This is why I’m startimg. My doctor has suggested the above drugs and I’m planning on starting when I can get the one a day option just after Christmas. I’ve not had much feedback on the drugs from here but from what I’ve gathered they seem pretty good.

Hi Op,

Sounds like you have a plan and a Clinic specialist who is up to speed with the current treatment options.
Keep working with them, a good relationship with the clinc is important

Do keep us posted on how you get on

Jim
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
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You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

My Instagram
Threads

Offline PozLawyer

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  • Bipolar HIV+ former DC BigLaw attorney
Exactly. This is why I’m startimg. My doctor has suggested the above drugs and I’m planning on starting when I can get the one a day option just after Christmas. I’ve not had much feedback on the drugs from here but from what I’ve gathered they seem pretty good.

I hope the sources I quoted/linked gave you the feedback you were looking for on the specific drugs--which is that they are a good combo.
Follow me on Twitter at @PozLawyer https://twitter.com/PozLawyer.

Diagnosed August 2014
Tivicay + Descovy, VL UD, CD4 fluctuates b/w 400-600
Married, serodiscordant.  Husband is negative.
Avid gamer (Gaymer!).  https://daggr.net/members/3696/

Offline Souledout

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Thanks everyone for all the information. I’ll report back when I start I guess.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline eric48

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The context in which treatment is offered regardless of CD4 (not imposed) is that of the USA, where once daily, single pill are offered, in the vast majority of case.

Furtheron Modern drugs are deamed less toxics: so the balance convience (hence adherence), benefits, risks is tilting in favor of treatment for all.

All, here, means all with access to treatment that are less-to-no toxic and convienient. I am not sure how someone, in the same situation as yours, would react when offered meds that contains AZT or Stavudine, for exemple.

For costs reasons, some socialized health care systems are recommending (but not imposing) options that do not fit in the ideal situation as found in the USA.

A Once daily RAL/ABC/3TC proposal is less expensive, while being once daily. But once daily is RAL 1200 mg + ABC 600 mg  + 3TC 300 mg, thus 2100mg /per day/ for years and years... (RAL 400 mg is twice daily)

RAL 1200 mg is in 2 pills (2x 600 mg) and ABC/3TC , when decoformulated is 3 pills: so this is a total of 5 pills

So this is (by far) the highest dosed regimen ever, with a high number of pills. Those who advocate that shift are not call bean counters for nothing

The UK still offers once daily, low dosed, one pill options: they are still available and have not disappeared into blue sky.

Since you are in a situation where you still have some negociation power (a negociation power that will be voided once you accept their proposal), you may want to explore, thru the discussion here, what your negociation arguments could be.
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline PozLawyer

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A Once daily RAL/ABC/3TC proposal is less expensive, while being once daily. But once daily is RAL 1200 mg + ABC 600 mg  + 3TC 300 mg, thus 2100mg /per day/ for years and years... (RAL 400 mg is twice daily)

RAL 1200 mg is in 2 pills (2x 600 mg) and ABC/3TC , when decoformulated is 3 pills: so this is a total of 5 pills

So this is (by far) the highest dosed regimen ever, with a high number of pills. Those who advocate that shift are not call bean counters for nothing

Two points:
1. I thought (but maybe I'm wrong), that it is RAL 600/day 1x/day, not twice.

2. No matter whether it is 600mg or 1200mg; the total mg dosed is not something the OP should be worrying about (you call this in bold type the "highest dosed regimen ever").  There is no clinical reason to care that the OP's proposed regimen weighs more than other regimens.  One reason is that some molecules are heavier than others. RAL is in fact heavier than, e.g., DTG when measured by molecular weight.

To put it differently, RAL+Descovy/Truvada is one of the four "ideal" recommended regimens under DHHS guidelines.  Descovy/Truvada is more expensive than ABC/3TC, but the guidelines also recognize RAL + ABC/3TC as effective, and both regimens include the exact same amount of RAL.

I'm sure the OP has a range of options available, but the total mass in mg of the regimen is not a metric that should be influencing that decision...
« Last Edit: October 20, 2017, 07:35:40 am by PozLawyer »
Follow me on Twitter at @PozLawyer https://twitter.com/PozLawyer.

Diagnosed August 2014
Tivicay + Descovy, VL UD, CD4 fluctuates b/w 400-600
Married, serodiscordant.  Husband is negative.
Avid gamer (Gaymer!).  https://daggr.net/members/3696/

Offline Jim Allen

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The two of you are talking to eachother and not the OP.
Again.

Also very successful vomiting over the thread with obscure guidelines and unrealistic presentations and regarding theory and treatments not available in the real world for the OP.

I spoke to the OP and the thread with regret is being locked.

OP wish you all the best and keep us posted how you get on when you start treatment.

Jim
HIV 101 - Everything you need to know
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Offline Jim Allen

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@Eric48

MOD note:

Following a review by the team you have been issued a full ban (TO)

The reason is the continued direct or indirectly marketing an unproven modality for the treatment of HIV/AIDS (only once was enough) and also on other postings for not providing evidence to backup your claims or providing only "Un- published and/or not peer reviewed works" 

This was a joint moderator decision.

Jim.

https://forums.poz.com/index.php?topic=277.0
« Last Edit: October 20, 2017, 01:20:50 pm by JimDublin »
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