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Author Topic: Considering the following supplement regimen before starting ARV  (Read 15736 times)

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Offline Boze

  • Member
  • Posts: 477
Hello,

I've searched the literature and these forums and came up with the following supplement regimen:



Thoughts on it:

1) The 4 items on top in blue cells are components of the Gut-Shielding Mix NR100157 that has proven to slow CD4 drop (http://www.actions-traitements.org/spip.php?article3053)

2) Next 3 seem to have positive influence on HIV without any side-effects

3) Andrographis & Korean Ginseng provide some overall immune boost with small potential for helping HIV. I am not sure if will continue with them

4) Acyclovir is supposed to suppress HIV for those who have herpes. I have HSV-1.

5) Last 3 have been reported to be beneficial for HIV, haven't found any side-effects. All the stuff in bold I haven't received yet

Lastly - I have a thought about the efficacy of herbal supplements. Most of them have not been proven to be beneficial in a clinical trial but we have anecdotal evidence. What does it mean? I think there is a real possibility that these supplements may help some individuals. The number may be low enough - 20% - that it would not pass muster for a clinical trial. But what if I happen to be one of these people? As long as there are no side-effects to taking a particular supplement, I see no harm in trying.
Nobody today is spending big money on this stuff to find out exactly how it works and in what exact circumstance. Maybe in the future scientists will figure it out and say - Licorice can help with HIV for South-East Asian men under 40 who also have factor X and Y. But today it's up to the individual to try and find out on their own.

Total number of pills is a bit daunting - but I find that can do about half with a full glass of water. Which also gets me drinking :) Total cost per day is about 2.60 - about the cost of a Starbucks latte.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Nestor

  • Member
  • Posts: 430
  • What we love, we shall grow to resemble.
Re: Considering the following supplement regimen before starting ARV
« Reply #1 on: April 24, 2010, 06:25:04 PM »

Hi Borzel,

This list contains a number of things that I myself use periodically, or have used in the past.  Here are my comments on each one, excluding n-acetyl cystein, andrographis, and acyclovir, which I don't know about. 

omega-3 This is found in walnuts, and in traditional (grass and insect-eating) meat and eggs.  Most nuts, however, have only omega-6, and most modern diets have far more omega-6 than 3, so things like flax oil and cod liver oil are recommended to balance the two.  I sometimes take a blend of flax and GLA-rich evening primose or borage oil, which is supposed to be good for the skin.  My dermatis definitely improved when I started taking it, and got worse again when I stopped!  I would recommend a diet of whole, natural foods (lots of wild-caught, not farmed, fish, grass-fed meats, free-range eggs, etc.) some coconut oil, and a small daily dose of clo or flax for balance. 

Colostrum: I am lucky enough to belong to a milk club which gets fresh milk from an organic dairy; whenever they have colostrum I make sure to order some.  It tastes great and is a good spring tonic. 

Probiotics I think a good yogurt or, better yet, kefir is a must in every kitchen, certainly in mine.  Also important are fermented vegetables and fruits like kimchi or saurkraut. They help digestion, and many HIVers have issues with that! 

Curcumin This is the active agent in turmeric and is a strong anti-inflammatory.  I was taking it religiously until a recent "break" which I started taking from all supplements.  Part of my reason for taking a break was that I wasn't sure what it was actually doing, and a basic lack of trust on my part for anything not in the form of a whole food.  I read somewhere that inflammation, while it is easy to blame for many things that go wrong in the body and the brain, is a necessary part of the healing process, so that to flood the body with anti-inflammatory stuff might not be wise.  So for the moment I am taking a break from turmeric, but I look forward to reading more about it and perhaps revisiting it in future. 

Licorice, Astragalus, and Gingeng These are traditional Chinese herbs.  Licorice is good for just about everybody and is including in almost every Chinese formula.  Astragalus and Ginseng often go together.  The former is an immune-system modulator and the latter is a tonic; it gives energy and strength and is supposed to fight depression and fatigue.  I stopped taking it because something I read made me wonder whether it might be bad for someone with HIV; I can't remember what that was at the moment. Could you point me to what you've read about ginseng and HIV? I'd like to see it.  All of these Chinese herbs would be better if prescribed by a competent TCM practitioner who has examined you and knows your individual situation, but licorice and astragalus are generally good for anyone.  So, by the way, would be reishi and the other medicinal mushrooms.

L-carnitine I think anyone who is eating a decent amount of red meat is getting enough carnitine; if you are a vegetarian, then taking it in supplement form might be a good idea.  CoQ10, by the way, is found mainly in heart meat, so that is another plug for organ meats!

Bitter melon This is extremely good for many reasons.  It treats diabetes in people who have it and helps prevent it in those who don't.  It adds the much-lacking dimension of bitterness to the flavor profile of our cooking.  I try to make it on a regular basis, and I've assembled a number of great recipes for it, if you'd like to hear them.  The only problem is that I can only find it from street vendors, and I assume it isn't organic, so I have to violate my usual organic-only policy for it.  Still, I think it's worth it. 

Selenium Many people with HIV are lacking in selenium.  Brazil nuts are extremely rich in it, as are tuna and kidneys; barley and shiitake mushrooms both have a decent amount, which is very interesting considering the reputation those two items have in China for being anti-viral.  But with minerals it is not only a question of quantity but balance with other minerals, which often compete for the same space in our bodies.  Zinc and copper, for example, compete in that way, so that an excess of one will lead directly to a deficiency in the other.  I assume that with whole foods it is much harder to get this kind of excess (though if you ate a cup of brazil nuts a day you might risk it) so that I prefer to stick to food rather than supplements. 

I wonder whether your package might not be too much too soon?  That is, taking so many things at a time, how would you know what was doing what?  If you started feeling better, what would you credit?  If you started feeling bad, what would you blame?  Even taking far fewer supplements than you propose, I've had that problem: if I take a few things at once, I have no idea whether any of them is accomplishing anything.  It is traditional, with Chinese herbs and in Ayurveda too, to take something for a while, then take a break, then start taking it again, so that the body does not get "immune" to the thing.

 I should tell you that I had a rather eye-opening experience a few months ago: it became clear that I had a mild case of gout.  When I investigated this, it turned out that the foods that cause gout turned out to be virtually a catalogue of the things I ate on a regular basis: sardines, anchovies, oysters, shrimp, scallops, liver, kidneys, heart: seafoods and offal.  And I was eating all of them for the good things in them: sardines and anchovies for omega-3, oysters for zinc, shrimp for vitamin D, liver for copper, kidneys for selenium, heart for CoQ10, all the organ meats for B12.  And I think that this was not a bad thing, but I was overdoing it, and at the same time not eating enough fruits and vegetables.  So the gout was a gentle reminder to me that the time had come to recalibrate and rebalance my diet.  I ate a dish of anchovies the other day, and had a very mild gout attack the next day, so it isn't out of my system yet, but I think it's on its way out and I'll be able to eat those foods in moderation again soon.  My point is this: if going slightly overboard with real foods can have unintended negative consequences, who knows what going overboard with supplements might do? 

Anyway, it would be interesting to continue this discussion and compare notes; good luck with your experiment!
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 Boze

  • Member
  • Posts: 477
Re: Considering the following supplement regimen before starting ARV
« Reply #2 on: April 24, 2010, 07:33:41 PM »
Dear Nestor,

Thanks a lot for your thoughtful reply. Here are my thoughts on the issues you raised.

1) You seem to be a much better cook / serious about the whole nutrition thing. I don't do much cooking , so getting all these nutrients/minerals in a natural form is kinda out of question for me. I simply ordered them in extract form - a bunch of capsules. If I tried to replicate this the natural way, it would probably take too much time/effort and I would just fail.

Let me show an example - the capsules that I take for Omega-3: http://www.bodykind.com/product.asp?CatID=290&ProdID=2187

These capsules are probably are inferior to a good natural meal but I think they still provide a good way to get the stuff I need.

2) I've only been diagnosed about a month ago, totally randomly, didn't consider myself to be under any risk of it.  I have (knock wood) not yet experienced any symptoms and seem to feel fine. So the only goal of this regimen is to slow CD4 decline and (hopefully but I'm doubtful) reduce the viral load. FYI they were 690 / 20,000 when I was diagnosed.

You are absolutely  right - taking about 10 different things at the same time will not allow me to isolate which one is being beneficial (if I achieve the desired result) and which is giving me problems (if I face them). However - I actually don't mind giving it a shot. So far I'm taking everything on the list except the bottom 4 ones. Don't see any difference - either positive or negative to my overall condition. But I have to say that I've been in pretty decent shape so far, so only trying to maintain that.

3) I read about Korean Ginseng in the following study: http://www.thebody.com/content/art30196.html

It's pretty old - 2001 - and the dosage was enormous (6g a day). I am certainly not willing to take that amount - but feel that it may be beneficial as part of the overall supplement regime. I should consider taking it in 2 week intervals (on/off). Do you think any other supplements on the list should be taken for some time followed by a break?

4) Overall my main approach for selecting what to take had to do with negatives I read about various supplements. For example I've decided against Cat Claw and St. John Wort because they have certain side-effects. I was not able to find any reason NOT to take any of those things in literature. So I see them as an option - if they happen to suppress HIV and keep CD4 up - great. If not - i'm hopefully only losing 2.60 a day.

5) Of course the biggest question is overall efficacy. Unfortunately I will only be able to take 3-month snapshots of my condition.
Then the issue is whether I should not just drop taking 30 capsules a day and start ARV. I see that you've been able to hold off - when would you consider it? Are you feeling anything because of HIV?

Thanks a lot!
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline tommy246

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  • Member
  • Posts: 435
Re: Considering the following supplement regimen before starting ARV
« Reply #3 on: April 30, 2010, 02:27:00 AM »
I have been on atripla 6 months and doing well and recently started supplements even though i eat a good diet.

Multivit and selenium  every other day.
Vit B and calcium vit D  every other day.
Omega 3 Daily
Green tea Daily
Probiotics Yoghurt and actimel Daily.

Diet wise i eat a good bowl of branflakes with skimmed milk for breakfast , plenty of fruit ,salad and vegetables , brown bread no butter , beans, white meat mainly rabbit and chicken , pasta and rice.

On weekends i have my treats a good steak or leg of lamb , a fried breakfast sometimes , some cake or chocolate a few beers or red or white wine.

My wieght has been exactly the same for the last 15 years at around 17 stone , 6ft 2 " , even though i dont train as hard as i used to now i am 49 years old.
« Last Edit: April 30, 2010, 02:37:41 AM by tommy246 »
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline mecch

  • Member
  • Posts: 12,079
  • red pill? or blue pill?
Re: Considering the following supplement regimen before starting ARV
« Reply #4 on: April 30, 2010, 04:44:04 PM »
What are your numbers and what has been the progression since you were infected with HIV?

My personal opinion is that every little bit of good diet, happiness, exercise, love and careful supplementation helps keep us healthy, but the best way to stop a declining immune system caused by HIV is HAART. 

I'm not anti supplementation - in fact I'm going to try black walnut tincture soon to see if I can get a CD4 boost.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Nestor

  • Member
  • Posts: 430
  • What we love, we shall grow to resemble.
Re: Considering the following supplement regimen before starting ARV
« Reply #5 on: May 01, 2010, 05:29:11 AM »
Dear Nestor,

Thanks a lot for your thoughtful reply. Here are my thoughts on the issues you raised.

1) You seem to be a much better cook / serious about the whole nutrition thing. I don't do much cooking , so getting all these nutrients/minerals in a natural form is kinda out of question for me. I simply ordered them in extract form - a bunch of capsules. If I tried to replicate this the natural way, it would probably take too much time/effort and I would just fail.


I don't think that I'm more serious about nutrition so much as simply having slightly different objectives.  You're right: if you tried to get the same quantities of some or all of these things from diet would be impossible.  In fact, if you look at the quantities in which I eat almost any of these things, it would seem way to small to have an effect.  Take bitter melon for example: I cook with it from time to time, probably on average once or twice a month.  But for me, that's almost the point of insisting on getting them naturally; I'm not sure I trust huge doses of anything.  I also don't trust vitamins or minerals that have been isolated from their source.  But that's only a hunch on my part; it might well be that taking these supplements will put you in a better position!  

One reason I think that something I'm doing might be helping fight the virus is my own numbers history.  My first test results at the beginning of 2006 were pretty good; ten months later, my t-cells were in the same range (although the percentage was much better which, if I'd known about percentage then, would have cheered me up a bit) but the VL had exploded.  That was when I started looking into natural anti-virals and started using coconut oil and bitter melon and so forth.  At the next test, the VL had declined but was still high; t-cells too had dropped.  I became more serious about these things.  With the next test, my t-cells were back up and the VL had dropped a lot.  Since then, in four years, the VL has never gotten anywhere near the 52,000 again, and t-cells and percentage have remained stable at decent numbers.  This could of course be coincidence, but the fact that I had 54,000 VL before any intervention on my part, and then never again since such intervention, makes me incline towards thinking that it's not.

 

Let me show an example - the capsules that I take for Omega-3: http://www.bodykind.com/product.asp?CatID=290&ProdID=2187

These capsules are probably are inferior to a good natural meal but I think they still provide a good way to get the stuff I need.


As for omega-3s, the main way anyone would get them is from fish and flax, so taking flax oil in a capsule form is no different from taking a spoonful of it from a bottle, which is what I do when I think I need some more omega-3.  But I do not understand why they sell these capsules with a "perfect balance" of omega-3 to omega-6.  As they themselves say, we, almost all of us, if we are eating anything like a normal modern diet, are getting way too much omega-6 relative to omega-3.  So the point of taking omega-3 is to correct that imbalance.  I don't need the omega-3 supplement to be balanced with omega-6; I'm already getting way too much of that to begin with!  The one exception is GLA, which is an omega-6 found in borage and evening primrose oils.  That is supposed to be really good for the skin, so what I take, when I take anything, is a half-teaspoon of cod liver oil (regularly in winter, occasionally in summer) and a tablespoon of a flax-oil/evening primrose mixture (only when I'm experiencing dermatitis or dry skin).  

Quote
Do you think any other supplements on the list should be taken for some time followed by a break?

I would think that taking breaks from all of these things would be a good idea, occasionally, for several reasons-money, easing the number of pills you take a day, and giving your body a rest from what might be too much of a good thing.  




5) Of course the biggest question is overall efficacy. Unfortunately I will only be able to take 3-month snapshots of my condition.
Then the issue is whether I should not just drop taking 30 capsules a day and start ARV. I see that you've been able to hold off - when would you consider it? Are you feeling anything because of HIV?

Thanks a lot!


There are two problems which I have that could be because of HIV: fatigue, and dermatits.  Both are pretty mild, however, and both are problems which I started having years before I got infected.  Also, there are other explanations: in the case of fatigue, for example, I'm at a job I really don't like and which forces me, an extreme night owl, to be up at six in the morning.  The one thing that I can pretty clearly connect to HIV is dandruff, which I started to experience in my second year of HIV and which I'd never had before.  I've been able to control that with good shampoo (burdock and nettle), coconut oil massaged into the scalp, and the same flax-evening primrose mixture I mentioned before, and now I haven't even had the dandruff for over a year.  When I first learned that I had HIV, the very name struck terror in me; I can still remember being near fainting and cold sweat.  If only there had been someone then to tell me that, six years into the disease, the worst I would have to complain about would be dandruff!  

So I really don't know whether I'm feeling anything due to HIV.  I will consider starting ARVs when my body seems to be telling me that it cannot fight the virus on its own anymore, or when there has been clear, consistent decline in t-cells that no natural intervention on my part seems capable of reversing.  For me, consistent decline in t-cells is more important than actual numbers, but if I had to name a number at which I'd start HAART, it would probably be around 300 or 350; I wouldn't let myself get too far below 300 for very long without starting.   I would also pay very close attention to percentage.  

Hope that helps; keep us posted!
« Last Edit: May 01, 2010, 05:31:47 AM by Nestor »
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 Boze

  • Member
  • Posts: 477
Re: Considering the following supplement regimen before starting ARV
« Reply #6 on: May 04, 2010, 09:39:32 AM »
Mecch: I've just update my sig with numbers. Just found out my second test result (one month after diagnosis) and I dropped 90 CD4 (to 600 from 690) - probably due to stress from finding out I was ill. Given that I've been sick for almost 2 years this 90-cd4-per-month drop is not something I could've had been sustaining a long time :)


Here is my updated regimen list with more detail and explanation of what different things are for. I would probably keep taking all except the anti-viral supplements (yellow) after starting ARV. I have only just received all the items on the list now so will take some time before I can track how effective it is.




Nestor - I guess my main worry about letting the body fight HIV on its own (with help from supplements) is the damage that is being done deep inside, without us being aware of it. It's really this unknown that's bothering me. How much can we rely on how good we feel as a benchmark for when to start treatment?

==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Nestor

  • Member
  • Posts: 430
  • What we love, we shall grow to resemble.
Re: Considering the following supplement regimen before starting ARV
« Reply #7 on: May 07, 2010, 06:04:27 PM »



Nestor - I guess my main worry about letting the body fight HIV on its own (with help from supplements) is the damage that is being done deep inside, without us being aware of it. It's really this unknown that's bothering me. How much can we rely on how good we feel as a benchmark for when to start treatment?



I too worry about this unknown.  But I would worry just as much about the unknowns of the ARVs.  How do I know what four decades on truvada would do to me?  But just as fear of these unknowns will not stop me from starting HAART when my time comes, so the fear of the unknowns of the virus is not going to scare me into starting meds before my time comes.  Hopefully, someday there will be clear information around these issues, but until then we really only have intuition to guide us.  Recent blog posts by Dr. Sonnabend and Sean Straub, here at Poz, are quite illuminating in separating information from hype in these questions.  I wish you good luck with these supplements! 
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 Boze

  • Member
  • Posts: 477
Re: Considering the following supplement regimen before starting ARV
« Reply #8 on: May 09, 2010, 07:32:38 AM »
My thinking is largely in line with this guy's: http://www.thebody.com/content/art56491.html
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline natthai

  • Member
  • Posts: 130
  • The truth is not determined by majority vote.
Re: Considering the following supplement regimen before starting ARV
« Reply #9 on: September 11, 2010, 06:35:44 AM »
Here is my list. I composed it from searching through all the pubmed articles I could find on HIV and nutrition. I found that many studies showed that suggested HIVers are chronically deficient in certain vitamins and micro-nutrients. I would really appreciate feedback (especially from long term survivors) or anyone who has tried any of these and what your experience with them was. So far I am 7 months post infection and aside from the acute flu like symptoms in the first few weeks I have been asymptomatic since then. My goal is to stay as healthy as possible for as long as possible. Any to seek treatment only when it is warranted (when the guidelines and my doctor suggest it).

I plan to do this by:

1. Monitoring my immune function and VL periodically (every 4-6 months)
2. Drink in moderation
3. Eat healthy
4. Supplement with nutrients known to be deficient in HIVers
5. Get as much high quality sleep as possible.
6. EDUCATE and learn everything I can about this disease
7. Maintain a low stress lifestyle.

Current list:

Vitamin ACE, Se (GNC one pill) (1)
Vitamin B+Zinc (Stresstab) (1)
Alpha Lipoic Acid (1)
NAC (1)
Melatonin (1)
Calcium+D (Caltrate) (1)
Garlic Extract (2)
Omega-3 Fish Oil (3)
Aspirin (500mg) (1)
Coconut (1)

Overall the pill burden is 12 or if you don't count the garlic and fish oil it is 7 which is quite manageable. I also drink a fermented yogurt drink each day which has pro-biotic bacteria in it.

Additionally I eat at lot of fresh fruit. I live in the tropics in a valley surrounded by beautiful mountains so the soil here is very fertile and the fruit and veggies are grown locally picked and sold fresh daily. They aren't cold stored or shipped across the country so I believe they are very high in nutrients.

I am wondering how long have others stayed healthy post diagnosis before starting treatment? Aside from those that start treatment right after diagnosis, I wonder what the average is. Any long term survivors care to share your experience?
« Last Edit: September 11, 2010, 06:50:14 AM by natthai »
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline Ann

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Re: Considering the following supplement regimen before starting ARV
« Reply #10 on: September 11, 2010, 07:00:18 AM »
I was infected in 1997 and I'm still not on meds. I don't do supplements. I smoke, I love my whiskey, I stay up late, the only exercise I get comes from the fact that I do not own a car, and I lead a life of general debauchery. Yet I'm healthy and do not yet need meds. Go figure.

Hiv effects each and every one of us differently. There's no proof that supplements or what have you make one iota of difference. It seems to be more of a genetic thing.
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"...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 natthai

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Re: Considering the following supplement regimen before starting ARV
« Reply #11 on: September 11, 2010, 07:16:48 AM »
I was infected in 1997 and I'm still not on meds. I don't do supplements. I smoke, I love my whiskey, I stay up late, the only exercise I get comes from the fact that I do not own a car, and I lead a life of general debauchery. Yet I'm healthy and do not yet need meds. Go figure.

Hiv effects each and every one of us differently. There's no proof that supplements or what have you make one iota of difference. It seems to be more of a genetic thing.

I am not convinced about lifestyle factors yet either although I did give up smoking when I got my diagnosis. Interestingly I found a few studies that showed smoking actually has a beneficial effect on disrupting KS!

I would like very much to figure out what factors contribute to your progression. Do you feel that any behavioral activities you have taken have contributed to your progression? Or have you concluded that it is mostly genetics. Have you participated in any long term survivor or LTSP studies?

I know you are an advocate of regular monitoring. I agree with this. After your quarterly CD4 and VL test do you dwell on your infection or do you basically forget about it and go on with your life. I wonder what role psychology plays this disease.

Another thing I have wondered about is about Acyclovir. I have always had cold sores on my lips from even when I was a little boy. Just this week I search about Acyclovir and found that the version of the drug once converted by the Herpes virus is a direct inhibitor of HIV DNA replication. This was a study at Jon Hopkins I believe. In the same study they described that people in the Acyclovir group had a 5-6 fold decrease in VL. They also mention one caution as well.

Another one estimated that HAART treatment could be offset by up to 2-3 years if you are using Acyclovir. I read in some other threads Ann that you have been taking suppression levels of Acyclovir. What dose have you been taking? Have you been taking it throughout the course of your disease? In light of the studies (there are hundreds of them now on pubmed about Acyclovir and HIV) do you feel this has had any effect on the course of your infection?

What caught my attention is that some blogs of Long Term Survivors also described taking Acyclovir daily and they do believe it has played a factor in their disease progression. I have been taking Acyclovir episodically (when I have an outbreak). But I am considering a daily suppression dose (I do get a lot of cold sores) I wonder what others, especially long term survivors think about this.
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline Ann

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Re: Considering the following supplement regimen before starting ARV
« Reply #12 on: September 11, 2010, 10:33:45 AM »

I would like very much to figure out what factors contribute to your progression. Do you feel that any behavioral activities you have taken have contributed to your progression? Or have you concluded that it is mostly genetics. Have you participated in any long term survivor or LTSP studies?

I was coinfected with hep C (got hep C in 1984, hiv in 1997). I was successfully treated for hep C in 2002/03 and since then, my VL has been somewhat lower. During treatment my CD4s went down, but went back up to pre-treatment levels after. As far as I can tell, getting rid of the hep C hasn't impacted on the hiv. Hiv is known to accelerate hep C progression, but not the other way around.

I suppose I do believe that progression is largely due to genetics, although I also believe that things like severe and prolonged stress, very poor nutrition, lack of decent health care etc will have an adverse effect. But for someone like me who lives in a developed nation with access to adequate nutrition, housing and health care, I think it does largely come down to genetics.

I base a lot of this on what I have read on the history of the pandemic. Back in the early days before HAART, many people were doing the health kick thing (along with lots of other things) and for some, it made absolutely no difference; they still got sick and died. Others lead crazy lifestyles, thinking every day could be their last, yet they survived - and many still survive - long enough to benefit from HAART. Genetics makes sense in that light.

No, I've never participated in any studies. I live on a Rock in the middle of the Irish Sea and constantly flying over to the mainland for the necessary labs would be impractical as well as exhausting. I know because during my hep C treatment I had to go at least once a month and it was a pain in the ass.


I know you are an advocate of regular monitoring. I agree with this. After your quarterly CD4 and VL test do you dwell on your infection or do you basically forget about it and go on with your life. I wonder what role psychology plays this disease.

While I think about hiv every single day because of my work on this forum, I don't really think about my own virus all that much and no, it doesn't make me anxious or worried or whatever. It just is, ok?

It wouldn't surprise me in the least if people who are constantly anxious about and fearful of their virus progress a bit quicker than they might, due to all that stress. Same for people who are living in the hiv closet and constantly fearful of people finding out about them. Stress is a real killer, even when you don't have hiv.


I read in some other threads Ann that you have been taking suppression levels of Acyclovir. What dose have you been taking? Have you been taking it throughout the course of your disease? In light of the studies (there are hundreds of them now on pubmed about Acyclovir and HIV) do you feel this has had any effect on the course of your infection?


I take 400mg once a day, but the recommended suppressive dose is 400mg twice a day. If I get a cold or undergo an excessive amount of stress for whatever reason, I take the recommended dose, otherwise I'll get a break-through.

I started taking it in 2006 or so, simply because I got fed up with having outbreaks. I haven't noticed it making any different to my labs whatsoever. I just no longer get blisters. But who knows, maybe it's helping my counts stay stable. ~shrug~

Well, I'm off soon to meet up with my mates and indulge in some of that whiskey I mentioned earlier. It goes great with a ciggy and a game of pool. :)
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"...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 newt

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Re: Considering the following supplement regimen before starting ARV
« Reply #13 on: September 11, 2010, 07:41:06 PM »
In In short, major factors which affect HIV progression:

your genes (tough)
considerable hard drug use (tough but easier to change) in some cases
syphilis

there are a few supplements I think worthwhile, but there's not really evidence to justify this position, it's just a good, cost-limiting, just-in-case bet, you can get ripped off by all sorts by the supplement industry.

acyclovir is a pharmaceutical medicine not a supplement.

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

Offline Boze

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Re: Considering the following supplement regimen before starting ARV
« Reply #14 on: September 12, 2010, 01:39:42 PM »
I absolutely agree with you, natthai - getting the right supplements can slow down HIV progression **for some people**. Whether you are one of them - impossible to tell. But since the cost is so low (a few dollars a day at most), I think it's worth a try.

A couple of suggestions:

1) I find that Adam Now Multivitamin for men takes care of all the vitamin needs. And it already includes 200mg of Selenium (what I think is recommended dose for HIV+ folks). Here is description: http://www.powerbody.co.uk/product-now_foods_adam_multi-vitamin_for_men_90_tablets,1344.html (it's just the first site that google pulled up)

2) I'd also recommend to add Probiotic, they help the gut. I recommend PB8 Pro-Biotic

3) What Omega-3 pill are you getting? 3 pills sounds like a lot, I think you can get the right daily dose with 1 pill

4) Acetyl L-carnitine

5) Aside from the daily dosage of adam now men multivatamin i would not take any other vitamins - such as Calcium & Vit D, etc.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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Re: Considering the following supplement regimen before starting ARV
« Reply #15 on: September 12, 2010, 02:06:44 PM »
getting the right supplements can slow down HIV progression **for some people**.

brick wall <--> my head
brick wall <--> my head
brick wall <--> my head
brick wall <--> my head
Condoms are a girl's best friend

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"...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 Boze

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Re: Considering the following supplement regimen before starting ARV
« Reply #16 on: September 12, 2010, 02:33:30 PM »
brick wall <--> my head
brick wall <--> my head
brick wall <--> my head
brick wall <--> my head

I will not argue (even though I am rather compelled)  - but feel it's my duty to inform the newcomer, so I will just reference these two posts by me:


http://forums.poz.com/index.php?topic=32991.msg406936#msg406936

http://forums.poz.com/index.php?topic=32991.msg406645#msg406645

==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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Re: Considering the following supplement regimen before starting ARV
« Reply #17 on: September 12, 2010, 03:05:46 PM »
[siz=9pt]I will not argue (even though I am rather compelled)  - but feel it's my duty to inform the newcomer, so I will just reference these two posts by me:


http://forums.poz.com/index.php?topic=32991.msg406936#msg406936

http://forums.poz.com/index.php?topic=32991.msg406645#msg406645



Yes, and I was clearly banging my head against a brick wall in that thread as well.

Now where did I put my Excedrin? I think I need to go have a lie-down.
Condoms are a girl's best friend

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"...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 Boze

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Re: Considering the following supplement regimen before starting ARV
« Reply #18 on: September 12, 2010, 03:38:42 PM »
Yes, and I was clearly banging my head against a brick wall in that thread as well.

Now where did I put my Excedrin? I think I need to go have a lie-down.

Right - but our previous conversations look like this:

Me - You should do X,Y,Z because study A,B,C demonstrated it to be effective for reasons K,L,M

You - No you shouldn't. I didn't and I'm fine, but I also have a rare genetic disposition. But you should do what I do, even though you have 3% chance of having same genes. And my doctor thinks so.

You never really made a case based on scientific evidence, just your own (unique I would add) experience.


==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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Re: Considering the following supplement regimen before starting ARV
« Reply #19 on: September 13, 2010, 10:17:40 AM »
I've never claimed to have a "rare genetic disposition". Never. Ever. Stop putting words in my mouth.

Lots of people can go for years before needing meds (without wasting money on unnecessary supplements), it's not rare at all. My experience is far from unique.

We pointed out to you how flawed the studies you cited were in that other thread, but you chose to ignore us. But whatever. You can waste all the money you want to. Not my problemo.
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"...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 Miss Philicia

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Re: Considering the following supplement regimen before starting ARV
« Reply #20 on: September 13, 2010, 01:19:32 PM »
brick wall <--> my head
brick wall <--> my head
brick wall <--> my head
brick wall <--> my head

Be nice Ann... some people just have trouble in social situations.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: Considering the following supplement regimen before starting ARV
« Reply #21 on: September 13, 2010, 02:58:35 PM »
getting the right supplements can slow down HIV progression **for some people**.

Oh boy.  Hopefully everyone checks with their doctor before beginning supplements.  Geesh.  Why would you get something you're going to pee out, with no benefit? 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Ann

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Re: Considering the following supplement regimen before starting ARV
« Reply #22 on: September 13, 2010, 03:11:35 PM »

Be nice Ann... some people just have trouble in social situations.

At least it was only my head I was banging against a brick wall, although his would have been infinitely more satisfying. Just sayin'....
Condoms are a girl's best friend

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"...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 Ann

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Re: Considering the following supplement regimen before starting ARV
« Reply #23 on: September 13, 2010, 03:26:45 PM »
And by the way Boze, here is my numbers history, just so you can see that I'm technically not a LTNP or elite controller and therefore am not one of the rare people in any way, shape or form. I'm just an average person with hiv.

I was infected in the spring of 1997 but not diagnosed until February 22, 2001.

Where the VL is listed at 00,000 it wasn't taken. I just used the zeros to keep the formatting clean.

2001-02-22 VL 80,700 CD4 490
2001-03-30 VL 21,000 CD4 997 32%
2001-05-29 VL 43,700 CD4 440
2001-07-10 VL 43,700 CD4 350
2001-08-07 VL 25,000 CD4 480
2001-08-21 VL 00,000 CD4 660
2001-10-08 VL 91,100 CD4 470
2001-12-04 VL 96,200 CD4 620

2002-02-04 VL 21,000 CD4 620
2002-04-11 VL 00,000 CD4 530 26% Started hep C treatment
2002-07-10 VL 00,000 CD4 460 27%
2002-09-11 VL 00,000 CD4 530 26%
2002-10-09 VL 30,300 CD4 322 31%

2003-01-08 VL 17,800 CD4 363 23%
2003-04-02 VL 06,940 CD4 410 Ended hep C treatment
2003-07-07 VL 40,700 CD4 474

2004-01-28 VL 29,900 CD4 518 28%
2004-03-?? VL 07,370 CD4 281 23% had shingles
2004-06-01 VL 07,740 CD4 460 27%
2004-08-30 VL 13,000 CD4 568 26%
2004-11-23 VL 11,000 CD4 645 28%

2005-02-15 VL 03,350 CD4 532 27%
2005-03-29 VL 00,000 CD4 715 28%
2005-06-21 VL 06,580 CD4 660 26%
2005-08-02 VL 00,000 CD4 732 28%
2005-10-12 VL 00,000 CD4 320 25% minor op previous day
2005-11-08 VL 10,200 CD4 786 28%

2006-01-31 VL 12,500 CD4 787 32%
2006-04-25 VL 11,800 CD4 628 29%
2006-07-18 VL 18,400 CD4 550 26%
2006-10-17 VL 14,500 CD4 447 26%

2007-01-16 VL 12,600 CD4 567 26%
2007-04-10 VL 07,610 CD4 441 26%
2007-07-03 VL 05,630 CD4 411 25%
2007-09-25 VL 16,700 CD4 525 27%
2007-12-18 VL 12,900 CD4 299 22%

2008-02-05 VL 13,700 CD4 489 19%
2008-04-29 VL 10,700 CD4 433 26%
2008-07-22 VL 10,200 CD4 314 27%
2008-11-04 VL 03,050 CD4 470 29%

2009-01-27 VL 06,700 CD4 459 25%
2009-04-21 VL 07,390 CD4 399 25%
2009-07-21 VL 35,000 CD4 561 32% New VL assay used
2009-11-03 VL 39,900 CD4 576 26%

2010-02-09 VL 00,000 CD4 392 29%
2010-05-18 results pending until September 28 2010
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"...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 newt

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Re: Considering the following supplement regimen before starting ARV
« Reply #24 on: September 13, 2010, 05:55:47 PM »
Quote
brick wall <--> my head
brick wall <--> my head
brick wall <--> my head
brick wall <--> my head

Like :-) ... why isn't there a like button?

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Offline Boze

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Re: Considering the following supplement regimen before starting ARV
« Reply #25 on: September 13, 2010, 06:30:18 PM »
Ann,

You are right, you didn't say that you have a unique genetic disposition - it is clear without you saying it.

http://www.hiv.va.gov/vahiv?page=pr-kb-00&kb=kb-03-01-04&tp=Other%20Primary%20Care%20Issues&tpage=prtop03-00-rr&sec=02

This paper presents the average incubation period from infection to be about 10 years. That is time to get AIDS. Ie most normal/average people are DEAD after 11-12 years. You are doing fine with a relatively normal CD4 count THIRTEEN years after infection. You are not average, average person is dead 13 years after infection. You are unique - which I say is Good on You!

However, your advice to newcomers to do X,Y,Z because it works for you is borderline disingenuous. I believe you have best motives at heart but you I find your situation similar to the old joke about superman http://www.sickipedia.org/joke/4993 .

Everybody else - I can't believe ya'll supporting this view with a straight face (meanwhile taking all kinds of vitamins/omega-3 and supplements yourselves). Please feel free to take sides in off-topic threads - but in instances where newly infected folks come for advice you ought to have their interest at heart and not just hooray someone who disagrees with me.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Miss Philicia

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Re: Considering the following supplement regimen before starting ARV
« Reply #26 on: September 13, 2010, 06:42:38 PM »
it's my duty to inform the newcomer

five months tenure means you're a newcomer as well, Bozey
"Iíve slept with enough men to know that Iím not gay"

Offline Rev. Moon

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Re: Considering the following supplement regimen before starting ARV
« Reply #27 on: September 13, 2010, 06:43:56 PM »


the average incubation period from infection to be about 10 years. That is time to get AIDS. Ie most normal/average people are DEAD after 11-12 years. You are doing fine with a relatively normal CD4 count THIRTEEN years after infection. You are not average, average person is dead 13 years after infection.

Poorly phrased and not quite accurate. Don't be surprised if some of our newer members freak out cause they read your post as "you'll be dead in about 13 years. See ya!".

I am amazed at how you pretend to know more than all of us combined when you've known about your poz status for barely six months. I guess you're an expert.

And no, supplements are pointless, regardless of what your expertise may say. Then again you must know more than my two HIV doctors.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline Dachshund

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Re: Considering the following supplement regimen before starting ARV
« Reply #28 on: September 13, 2010, 07:06:39 PM »
borderline disingenuous

That's the kettle calling the pot taupe. You flit from from post to post offering your opinion as fact over and over again. I know you get a very tiny boner over it, but you gots the freedom to post and we gots the freedom to respond sister.

However, there have been several folks posting in nutrition over the years touting everything from ginko to goat dung that they swore kept the virus in check. Check the history if you don't believe me when they returned to admit they compromised their immune system by delaying taking meds and wished they had listened. You're dangerous and it is our duty to point that out.

Offline Boze

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Re: Considering the following supplement regimen before starting ARV
« Reply #29 on: September 13, 2010, 07:31:23 PM »
five months tenure means you're a newcomer as well, Bozey

For sure, my personal experience with the disease is minimal thus far. However, I've researched enough on the topic to have reasonable knowledge as to current state of scientific opinion on it. Thankfully all the information is available - for anybody educated enough to process it.

Poorly phrased and not quite accurate. Don't be surprised if some of our newer members freak out cause they read your post as "you'll be dead in about 13 years. See ya!".

I am amazed at how you pretend to know more than all of us combined when you've known about your poz status for barely six months. I guess you're an expert.

And no, supplements are pointless, regardless of what your expertise may say. Then again you must know more than my two HIV doctors.

If one does not take HAART they stand a higher than 50% chance of being dead 13 years after infection. That's a fact - if you disagree please show your work.

Please show me a quote by a reputable HIV doctor who says that supplements (such as vitamins, omega-3, antioxidants, etc) are useless. Not as a replacement for HAART but as a way to supplement it/slow CD4 decline.

That's the kettle calling the pot taupe. You flit from from post to post offering your opinion as fact over and over again. I know you get a very tiny boner over it, but you gots the freedom to post and we gots the freedom to respond sister.

For the slow-witted ones: I said it's disingenuous to use one's unique genetic disposition (13 yrs with HIV on no medications and normal-ish CD4) as a demonstration of anything for an average person. Offering advice is welcome.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Hellraiser

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Re: Considering the following supplement regimen before starting ARV
« Reply #30 on: September 13, 2010, 07:37:40 PM »
"HIV denialists often claim that these people survived because they avoided antiretroviral therapy, and that diet, exercise, nutritional supplements or herbal therapies, stress reduction, hypnosis, and other interventions prevent progression to AIDS. These claims are untrue and dangerous."

That's from AIDStruth.org, but I mean feel free to find yourself of like mind with denialists.

Offline Dachshund

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Re: Considering the following supplement regimen before starting ARV
« Reply #31 on: September 13, 2010, 07:43:00 PM »
I repeat, boze is dangerous and anyone that follows his advice and not their doctors is a fool. He said it best "he is just another guy on the internet" and his "advice" should always be viewed in that light.

Offline Boze

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Re: Considering the following supplement regimen before starting ARV
« Reply #32 on: September 13, 2010, 07:44:39 PM »
I repeat, boze is dangerous and anyone that follows his advice and not their doctors is a fool. He said it best "he is just another guy on the internet" and his "advice" should always be viewed in that light.

You should make it your signature - "Danger, Will Robinson, Boze on board"
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Dachshund

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Re: Considering the following supplement regimen before starting ARV
« Reply #33 on: September 13, 2010, 07:49:43 PM »
You should make it your signature - "Danger, Will Robinson, Boze on board"

Only if you'll make yours " I'm not a homosexual but I play one on TV"

Offline Ann

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Re: Considering the following supplement regimen before starting ARV
« Reply #34 on: September 14, 2010, 08:57:33 AM »
Ann,

You are right, you didn't say that you have a unique genetic disposition - it is clear without you saying it.

~sigh~

NO, it isn't "clear". Did you even bother to look at my numbers? They should make it plain to you that I'm not unique in any way, shape or form. In fact, a lot of members here would have started meds already with my numbers.

I've met an awful lot of people over the years, both here in these forums and in "real" life as well, who have gone as long or even longer before eventually needing meds. It's not rare at all. How many positive people have you met in your short time living with hiv? I have a feeling I've met a few more than you and have a wider range of reference as a result.

This paper presents the average incubation period from infection to be about 10 years. That is time to get AIDS. Ie most normal/average people are DEAD after 11-12 years.

No, it doesn't. It ESTIMATES.It also does NOT say a person will be DEAD after 11-12 years, it talks about progressing to an aids diagnosis. That does not automatically equal death.   It also says the following...

Quote
The incubation period distribution is most directly determined by longitudinal follow-up of a cohort of infected individuals with known dates of infection. Because the incubation period is so long, following all of a sizable cohort from infection to disease or death could take decades. Some cohorts have now been followed long enough to observe the time at which half of them have been diagnosed with AIDS, the median of the incubation distribution, but the shape of the distribution for the remaining half is still to be determined. In the cohort of men who participated in the hepatitis B vaccine trials in San Francisco mentioned previously, 51% had been diagnosed with AIDS at 10 years of follow-up.( 15  ) The development of more effective antiviral therapies means that the characteristics of the full distribution will only be known as modified by treatment.

That means that 49%, just under half, did NOT progress to aids by ten years.

The study linked to in that article (15) states...

Quote
Cumulative risk of AIDS by duration of HIV-I infection was analysed for all 489 men by the Kaplan-Meier method. Of these 489 men, 226 (46%) had been diagnosed as having AIDS. We estimated that 13% of cohort members will have developed AIDS within five years of seroconversion, 51% within 10 years, and 54% within 11.1 years.

So you see, I'm not at all unusual. The percentage of people just like me is pretty damn big. Maybe you should read what you link to a little more closely.

However, your advice to newcomers to do X,Y,Z because it works for you is borderline disingenuous.

The only thing I advise newcomers is that some of them don't need to rush into taking meds. I advise them to learn about their virus and the meds and talk it over with their doctors. What's disingenuous about that? Find a post made by me where I gave disingenuous advice to a new person and post the link, please, or else shut up already.



edited for clarity and spelling fuck-ups
« Last Edit: September 14, 2010, 09:22:17 AM by Ann »
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"...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 Ann

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Re: Considering the following supplement regimen before starting ARV
« Reply #35 on: September 14, 2010, 09:27:26 AM »

"HIV denialists often claim that these people survived because they avoided antiretroviral therapy, and that diet, exercise, nutritional supplements or herbal therapies, stress reduction, hypnosis, and other interventions prevent progression to AIDS. These claims are untrue and dangerous."

That's from AIDStruth.org, but I mean feel free to find yourself of like mind with denialists.

And the denialists also blithely ignore all the people who partied like there was no tomorrow, maxed out credit cards and generally had a good time with little regard to their health, yet still survived until HAART became available. Just like Boze is doing (blithely ignoring, that is).

But what do I know, Boze is apparently the expert.


Edited because my spelling is atrocious today. Must be my unique genetic disposition at work!
« Last Edit: September 14, 2010, 09:30:00 AM by Ann »
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"...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 aztecan

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Re: Considering the following supplement regimen before starting ARV
« Reply #36 on: September 14, 2010, 11:44:35 AM »
And the denialists also blithely ignore all the people who partied like there was no tomorrow, maxed out credit cards and generally had a good time with little regard to their health, yet still survived until HAART became available. Just like Boze is doing (blithely ignoring, that is).

I resemble that remark - the party till you drop part, that is.  ;)

HUGS,

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

Offline Ann

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Re: Considering the following supplement regimen before starting ARV
« Reply #37 on: September 14, 2010, 12:06:00 PM »
I resemble that remark - the party till you drop part, that is.  ;)

HUGS,

Mark


Mark, if I remember correctly, you went for quite a number of years before starting meds, but you started when your numbers were still relatively high - before you got an aids diagnosis. Could you please share the details?

And I take it from your comment above that you partied hard during your aids meds free years. Yes? Any supplements during that time?


edited to add an inadvertently omitted word
« Last Edit: September 14, 2010, 12:26:55 PM by Ann »
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"...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 newt

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Re: Considering the following supplement regimen before starting ARV
« Reply #38 on: September 14, 2010, 01:00:35 PM »
Quote
So you see, I'm not at all unusual.

Well said, Ann. You can also read statistics, which I find very helpful.

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

Offline Ann

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Re: Considering the following supplement regimen before starting ARV
« Reply #39 on: September 14, 2010, 01:23:48 PM »

Well said, Ann. You can also read statistics, which I find very helpful.

- matt

Thanks, Matt. It's nice to get that sort of compliment from someone as knowledgeable as you. :)
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 Boze

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Re: Considering the following supplement regimen before starting ARV
« Reply #40 on: September 14, 2010, 02:27:15 PM »
Ann,

The advice I was referring to on your part was (only) telling people that supplements are useless. How you never took them and are still doing fine. From the studies I read (which you found inaccurate - but we can just agree to disagree on their merit) I concluded that they are extremely useful. Therefore if someone coming here wanting to learn about supplements gets told - by a moderator who is living fine meds-free 13 years after infection! - that they shouldn't waste their money on them, they may just listen. I think a more appropriate advice would be to say that there is:

a) A difference of opinion on the board with some members who feel that they are useful and others who disagree
b) Doctors don't have a clear view but don't discourage their use in moderation (ie not overdosing)
c) Studies show that certain supplements have slowed down CD4 decline but you personally are not convinced by their methodology

That would be a fair and balanced opinion.

On the uniqueness of your situation - I think it's clear as day that having a 400 CD4 13 years after infection is extremely rare. If  you think it's common - can you find someone else who agrees with this view?
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline phildinftlaudy

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Re: Considering the following supplement regimen before starting ARV
« Reply #41 on: September 14, 2010, 02:40:36 PM »
Supplements are useless:
http://www.nytimes.com/2009/02/17/health/17iht-vitamin.1.20240783.html?_r=1

http://www.nih.gov/news/pr/dec2001/niaid-05.htm

About the only one that seems to have any merit would be selenium; however, it can be found in certain foods - rather then having to take a supplement.

http://www.kaisernetwork.org/daily_reports/rep_index.cfm?DR_ID=42407
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline aztecan

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Re: Considering the following supplement regimen before starting ARV
« Reply #42 on: September 14, 2010, 03:17:29 PM »
After reading through this thread, I decided I would post an overview of the subject of supplements as I have experienced it.

Well, where to start? I drank kombucha tea, spirulina milk shakes (NASTY STUFF) and took a multivitamin off and on during the years prior to HAART.

But ,for the most part, after my diagnosis in 1985, I drank like a fish (booze that is), drugged like crazy (better living through chemistry?), never exercised and had a terrible diet.

I didn't even see a doctor until 1992, seven years after my diagnosis. Then the only thing she told me was I should quit smoking and gain some weight.

Neither of those things happened until three years ago. I quit smoking (a two-pack-a-day habit I had had for 32 years) using Chantix (hey, it worked great for me), and went from 155 to 185.

My mother was delighted.

I started meds in 1996, after the advent of the PIs. I started with AZT, Epivir and the original Saquinavir. My CD4 was 440 or so.

Long story short, I am still here 25 years after the doctor who gave me the diagnosis told me I would be dead in two.  8)

Why did things pan out like this for me? I was lucky. I managed to stay healthy despite my lifestyle.

But that changed as well. If I had eschewed meds in 1996, I doubt that I would still be here, or, if I was, I would not be as hale and robust as I am today.

For the record, my most recent labs, done in July, came back with an undetectable viral load (as it has been since July 1996), and a CD4 of more than 1,100. (I don't remember the exact number.)

Do I take supplements today? Yes, I do. They are meant to augment my ARV therapy.

But, I didn't for many years after I was diagnosed.

While supplements may be of some benefit to us high fivers, I have never seen any evidence they will inhibit the progression of HIV infection, nor that they are a substitute for taking ARVs.

That also would be true of other treatments or cures, of which there have been way too many to recount here, although some seem to have a life all their one on the Internet.

So, when people come to me and tell me they want to drink gogi juice, I tell them fine, but keep taking your meds.

I remember one person who decided he could rid himself of HIV by zapping his hypothalmus gland with some contraption he got on line. Thankfully, it was battery powered, not the plug-in kind. Heaven only knows what that would have done to him. :o

The bottom line is people should use their heads. If you come up with something you want to try, talk it over with your doctor first. Most of the time, these things are benign and, who knows, may actually be beneficial. But sometimes, they can really hurt you.

Also, if you are researching things, make sure the information you are gathering is current. There is still a lot of flotsam out there on the WWW.

HUGS,

Mark
« Last Edit: September 15, 2010, 12:21:02 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline newt

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Re: Considering the following supplement regimen before starting ARV
« Reply #43 on: September 14, 2010, 04:29:21 PM »
Quote
Studies show that certain supplements have slowed down CD4 decline

Ahem, no adequately powered randomised controlled trial has ever shown this in a statistically significant way.

The study report you reference earlier was a) a good report of b) a sensible study with a shed load of theory behind it, but c) which was stopped before a fair conclusion could be drawn either way, stopped for no good reason even, therefore we will never know whether then combination compound they used did or did not slow CD4 loss in people not on antiretroviral treatment. Note that a major reason for exiting the study was starting antiretroviral treatment, therefore much of a muchness, perhaps, overall, the compound. Still, it is a good enough bet I guess, at least they's safe to take have strong theoretical merit and won't harm you.

But I repeat, no adequately powered randomised controlled trial has ever shown a nutritional supplement can slow CD4 loss in a statistically significant way. Therefore there is no evidence to suggest supplements can fulfil this role, and likewise the converse. If anyone finds such a study that exists already and has reported, I will donate $1,000 to the running of this website.

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

Offline Boze

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Re: Considering the following supplement regimen before starting ARV
« Reply #44 on: September 14, 2010, 06:22:43 PM »
Ahem, no adequately powered randomised controlled trial has ever shown this in a statistically significant way.

The study report you reference earlier was a) a good report of b) a sensible study with a shed load of theory behind it, but c) which was stopped before a fair conclusion could be drawn either way, stopped for no good reason even, therefore we will never know whether then combination compound they used did or did not slow CD4 loss in people not on antiretroviral treatment. Note that a major reason for exiting the study was starting antiretroviral treatment, therefore much of a muchness, perhaps, overall, the compound. Still, it is a good enough bet I guess, at least they's safe to take have strong theoretical merit and won't harm you.

But I repeat, no adequately powered randomised controlled trial has ever shown a nutritional supplement can slow CD4 loss in a statistically significant way. Therefore there is no evidence to suggest supplements can fulfil this role, and likewise the converse. If anyone finds such a study that exists already and has reported, I will donate $1,000 to the running of this website.

- matt


The study I referenced ran for a year and reached statistically valid results. It was stopped at the recommendation of an independent Data Safety Monitoring Board, although I am not sure why myself. But can you (whose opinion I respect even though we may disagree) explain why you find the results inconclusive?

"Twenty-five of the 168 study volunteers randomized to receive NR100157 dropped out of the study because they needed to begin ARV therapy. In the placebo group, consisting of 172 study volunteers, 29 dropped out so that they could start ARV treatment. More than twice as many people living with HIV in the NR100157 group, compared with those in the placebo group, quit the study because of possible side effects, notably bloating and flatulence.

Despite high rates of discontinuation during the first half of the two-year study, Cahn and his colleagues noted encouraging differences between the two groups. In the NR100157 group, the average CD4 decline during the 52-week follow-up period was 28 cells, compared with 68 cells in the placebo groupóa difference of 40 cells that just managed to qualify as statistically significant.

Based on these results, an independent Data Safety Monitoring Board (DSMB) recommended that the study be stopped prematurely. What remains unclear, however, is why a study of this nature would be stopped when there is little evidence of harm, limited commercial access to the tested agent and a desire for long-term follow-up data from studies of nutritional supplements. "
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline natthai

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Re: Considering the following supplement regimen before starting ARV
« Reply #45 on: September 16, 2010, 05:57:14 AM »
aztecan: Thanks so much for your input. I was really hoping to hear from some more long term survivors and their opinions because I consider that you know this disease in a more intimate way than anyone else on the planet (including doctors and researchers). One thing I noticed that you have in common with Ann is that you (until recently) smoked. I wonder if smoking could actually have a beneficial effect!!

I know how this sounds but the other day when I was researching tobacco smoking and cigarette smoking I found a few studies that actually showed that smoking interferes with KS lesion formations! Apparently one of the chemicals in tobacco smoke interferes with the cell replication and disrupts the KS lesions from forming. I wonder if it has any other effects. Since I assume no reputable research will ever be done on the possible beneficial effects of smoking, anecdotal evidence is all we could entertain. So how about it, any other long term survivors smoked during their progression?

About the supplement and vitamin issue, when I got my diagnosis I started researching HIV and nutrition because my doctor told me it was important. I often came across studies showing that HIVers, when tested for various nutrition levels often has chronically lower levels of some key micro-nutrients than non infected individuals. Some of the explanation for this was that HIV (especially in the acute phase) competes with the body for the nutrients it needs to replicate itself. So if it needs selenium to reproduce then it can either take it from the host cell that it has infected thus depleting that cell's store of selenium or it can take it from the free selenium floating in the plasma. Apparently some immune cells also need selenium (and other nutrients) to mature so there is a battle for resources. This is what got me interested in supplements.

Now this is of course a far cry from stating that supplements increase CD4 count or decrease the loss rate of CD4 or inhibit viral replication etc. I haven't found any studies that directly support this (although I would be interested to read them). But if an individual is deficient in any micro-nutrient, then testing for the deficiency and supplementing to bring your body level back up to normal levels may be a wise thing to do.

Another wise thing might be to visit a nutritionist. Have any HIVers specifically gone to  see a nutritionist? I have two friends who just finished med school this year. One will become a GP and the other will go on to internal medicine and I know that both of them told me that MDs get very little training in nutrition. In both cases, they got one course- just the basics. Since nutrition is a VERY complex discipline I wonder if seeing a nutritionist to review your diet and testing for deficiencies is something that this community would recommend. It is probably a good idea to do regardless of infection status but with us HIVers we have this virus that is replicating, potentially co-oping some of our bodies micro-nutrients etc.

I know personally that my doctor told me that "nutrition is key to disease progression" although she didn't give me any specific advice. Another friend who became infected at the same time as me (earlier this year) just told me that his doctor advised him to eat a diet higher in protein. Specifically he recommended red meat and even told him where to buy high quality meats. I wonder again if this recommendation has something to do with the fact that when the virus is replicating it needs specific amino acids to make its DNA proteins and some of those amino acids (the 18 essential ones) our bodies cannot product and thus we need to get them from our diet. Alternatively one could drink whey protein powder which is popular with body builders. Does anyone here drink or recommend protein powder for general nutrition?

Interestingly to further support Ann's advice regarding starting meds. When my friend (mentioned above) was diagnosed his CD4 was 200 and his VL was 400,000! To my surprise, his doctor did not recommend that he start ARV right away and that instead he wait and monitor every month for a trend. 6 month later his VL is 2,000 and his cd4 is 410. Aside from eating more red meat, getting a lot of sleep and reducing stress, he did nothing special.

I know a lot of members here are proponents of starting meds early even earlier than the recommended guidelines. Do any of you think that the advice my friend got was inappropriate/irresponsible? His doctor is also a researcher in the START study, although unlike me he did not recommend that my friend join. However I believe that he is a published expert and knows what he is talking about. He highlighted the importance of waiting to see a trend and that a single test considered in isolation is not a reliable indicator of when to start treatment. This sounds very reasonable to me. What do you think?
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline madbrain

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Re: Considering the following supplement regimen before starting ARV
« Reply #46 on: September 16, 2010, 05:22:48 PM »
As someone who has both taken supplements and participated in HIV controller studies in the past, I think the genetic profile of the individual is probably a much bigger factor in the progression of HIV as opposed to any supplement regimen one may take.

I wouldn't discard supplements altogether. I think many are useful, but some clearly more so than others. There are many studies about supplements, unfortunately often small when it comes to their relationship to HIV. Also, doctors don't commonly check your vitamin or mineral levels, unless you can find a very good reason to convince them to do so. That makes it difficult to find the right dosage of supplements even when you can agree which ones to take. One level that doctors often will check if you ask is vitamin D, and I think it's a good idea for everyone to check and supplement if deficient.

 


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