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Author Topic: Suggestions for Supplements?????  (Read 14672 times)

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Offline odyssey

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Suggestions for Supplements?????
« on: March 22, 2009, 12:32:50 AM »
I was recently diagnosed (Jan. 9, 2009) w/ a CD4 of 425 and a VL of 32,415. I know I seroconverted sometime in the year or so before then. My therapist, who has done a lot of work with HIV+ and GLBT people, suggested I look into supplements in addition to the medical treatment I am getting from my physician. I am not on HAART yet. So, I'm definitely interested in taking supplements that have a proven pattern of effectiveness in improving health and aren't dangerous. I'd appreciate any recommendations people might have, or links/referrels to other sources of information. I tried looking on a few medical resource sites, but alas, it was mostly info about HAART and little about complementary options. So, if anyone could point me in the right directions or whatever, I'd be grateful!
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline carpediem98

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Re: Suggestions for Supplements?????
« Reply #1 on: March 30, 2009, 02:10:05 PM »
Hi there!
Sorry to hear of your diagnosis, but welcome here. 

The supplements I take that seem to be supported by research are:

Selenium - according to research, has some noticeable impact on lowering viral load
Resveratrol - according to research, is good for almost every aspect of human existence, lol...
K-Pax - Doc prescribed; in NYS, is covered by ADAP

Depending on your energy levels, you may also want to take a B-Complex to help keep your energy up.

In addition, make sure you get plenty of good fruits and vegetables in your diet, as well as fish for good/bad cholesterol balance.  Exercise is also key to keeping everything in balance.

Good luck to you! 

Offline odyssey

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Re: Suggestions for Supplements?????
« Reply #2 on: April 01, 2009, 11:53:20 PM »
What is K-Pax? I remember there was a movie awhile back by that name, but I doubt your consuming movie pills or anything. I can't eat fish due to sensory issues, do you know if fish oil capsules or whatever work similarly?
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline madbrain

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Re: Suggestions for Supplements?????
« Reply #3 on: April 02, 2009, 01:25:41 AM »
What is K-Pax? I remember there was a movie awhile back by that name, but I doubt your consuming movie pills or anything. I can't eat fish due to sensory issues, do you know if fish oil capsules or whatever work similarly?

Kpax is a dietary supplement that had a clinical study in people with HIV/AIDS, and claims it can increase CD4s.

http://www.kpaxpharm.com/vitaminsandsupplements/immunesystemboosters/immune-support-4pack

It is somewhat expensive. You can recreate a similar formula if you are willing to take more pills / capsules by buying its individual ingredients.

My "K-pax equivalent" costs $1.57 / day, and consistent of 10 different products and totalling is 13 tablet/capsules, vs $2.52 a day and 8 capsules for K-Pax.

The other supplements that I take which aren't in K-Pax that have also had support for HIV in some studies in people are :
- melatonin (at night). I take 1mg per night
- probiotics - acidophilus . I take 2 tablets of 3 billiions CFU per day
- coq10 . I take 200mg per day
- Panax Ginseng . I take 500 mg twice a day. This may help with your energy too.

I also take the following, which have some anti-HIV in vitro, but haven't been tested in people :
- EGCG . I take 400mg twice per day.
- Astragalus. I take 500mg twice per day.
- Quercetin. I take 500mg twice per day.

These additional 7 supplements amount to $1.18 per day.

Offline odyssey

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Re: Suggestions for Supplements?????
« Reply #4 on: April 02, 2009, 11:07:49 PM »
Madbrain-

That sounds like a pretty good idea to make your own version. Any chance you'd be willing to share the details? I'd much rather take more pills for less money than pay more just for consolidation. :D
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline madbrain

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Re: Suggestions for Supplements?????
« Reply #5 on: April 03, 2009, 07:47:39 PM »
Madbrain-

That sounds like a pretty good idea to make your own version. Any chance you'd be willing to share the details? I'd much rather take more pills for less money than pay more just for consolidation. :D

Of course :
My K-Pax clone is made of :
- Now Foods Adam Superior multi-vitamin. 2 tablets per day. 35.67 cents/day
- Now Foods B6 50mg . 1 tablet per day . 2.83 cents/day
- Now Foods B12 1000mcg. 1 lozenge/day . 3.77 cents/day
- Now Vitamin C Complex 500 mg. 2 tablets /day . 8.55 cents/day
- Now Vitamin E 400 IU natural . 1 softgel/day . 9.62 cents/day
- Now Foods magnesium citrate 200mg. 1 tablet/day . 5.03 cents/day
- Now foods acetyl l-carnitine 750 mg. 1 tablet/day . 27.98 cents/day
- Now foods alpha lipoic acid 600mg . 1 capsule/day . 26.98 cents/day
- Jarrows N-acetyl cysteine 600mg . 2 tablets/day. 29.34 cents/day
- L-glutamine 500 mg. 2 capsules/day. 13 cents/day .
I should mention that I decided to not re-order l-glutamine one for 2009, though I'm still taking it right now as I'm finishing the leftover from last year. My decision was because the glutamine is more helpful for advanced AIDS and people wasting, to help regain weight, and that's just not a problem that I have - I could use some weight loss actually. But if one had that problem they would need to take 10 - 40g of glutamine according to the research I read. Probably it would have to be taken in powder form to get that much, and it's a lot cheaper that way. And of course one would be on HAART too in that case.

Actually that totals 14 different pills/caps and $1.63 /day. I don't know how I came to the slightly different numbers the other day, I may have counted another supplement that I don't take for HIV.

The price I listed is based on what you get if you order from iherb.com, buying the largest bottle of each supplement I listed in quantity 1. If you order more than one bottle of each supplement at once, they give you discounts. There are also additional discounts if your order reaches a certain dollar amount. Iherb gave me "VIP" status based on having ordered so many supplements before, and since I ordered everything for the year at once, I got 16% off based on an order above $480 (it was just over that). No such discounts on k-pax.

The other products I take for HIV are :
- Now foods melatonin. 1mg time-release. 1 tablet/night. 3.77 cents/day
- Now foods acidophilus 3 billion . 2 tablets/day. 15.38 cents/day
- Jarrow Coq10 200mg . 1 capsule/day. 29.28 cents/day
- Now foods EGCG 400mg . 2 capsules/day. 17.96 cents/day
- Now foods Panax ginseng 520mg. 2 capsules/day. 12.58 cents/day
- Now foods quercetin with bromelain. 2 capsules/day. 21.57 cents/day
- Now foods astragalus 500mg. 2 capsules/day . 17.96 cents /day

And I take a few more products for other reasons too.
- For vitamin D deficiency : Now foods Vitamin D 3 5000 IU. 1 gel/day. 7.33 cents/day
- For bipolar : Now foods omega-3 1000. 2 gels/day. 8.08 cents/day . When I run out I will probably switch to a single more concentrated softgel. I wasn't aware they had them until the recent discussion about triglycerides. My bf is now dipping into my omega-3 reserves for his triglycerides problem, and taking 4 gels/day. So I will probably run out much sooner than anticipated.

That brings my daily supplement pill/cap total to 27, and cost $2.83 (before the discounts).

Offline odyssey

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Re: Suggestions for Supplements?????
« Reply #6 on: April 03, 2009, 10:43:08 PM »
Thanks Madbrain! I'm going to print that out and bring it to my next appointment with my doctor and get his opinion/okay to take supplements. I totally appreciate your help, it looks like you've got a great regiment going there!
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline madbrain

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    • My personal site
Re: Suggestions for Supplements?????
« Reply #7 on: April 03, 2009, 11:35:21 PM »
Thanks Madbrain! I'm going to print that out and bring it to my next appointment with my doctor and get his opinion/okay to take supplements. I totally appreciate your help, it looks like you've got a great regiment going there!

You are welcome. Many docs don't know a lot about supplements, though. That's because they usually prescribe meds, not supplements.
I think there is a fairly general consensus among doctors that at least taking a multi-vitamin is good for anyone with HIV. The Now foods multi-vitamin I take is a really good one - much better than things like Centrum or one-a-day.

I would suggest you do a bit of your own research on each supplement I listed in scholar.google.com . Search there on the name of each supplement + HIV, and I think you will find enough supporting evidence. I don't know if your doc would have the time to look into it all, though. It helps if your doc has email access like mine does so you can send web links .

Another thing I want to stress - the supplements don't have anywhere close to the level of scientific support as the meds do. None of them will suppress your viral load, though some have been shown to lower it a little bit. I have no way personally to say how much role the supplements have played in my good counts vs my genes. I'm just happy my counts are what they are. Your mileage will definitely vary. If my counts dropped within the guidelines for starting HAART though (<350 CD4, or <14%, or > 100,000 VL) for 2 consecutive tests, I would start HAART. I'm very far from that at this time, which is why I'm only taking supplements. I could be taking nothing too, but it feels a bit wrong to me not to be doing anything to counter the HIV. So I take supplements.

One thing with the supplements is they usually don't have the kind of side effects that HAART often does, and of course not the cost. However, if you do choose to take more than a couple supplements like I do, just don't ever do it on an empty stomach. I take half of mine after lunch, and half after dinner. The main side effect is gas. I add one gas-x at the same time I take supplements. I should probably count it in the regimen cost even though it's not a supplement. With the size of my regimen it would not be an option not to take it. Oh, and pill boxes are a must too of course, otherwise there is no way to keep track of that many products. I refill every 4 weeks. It takes me about 1.5 hours to fill 56 doses of supplements - 1 for lunch, 1 for dinner, times 28 days. I use sealed prescription bottles, with my own labels printed on them, for each dose, so the supplements don't spoil.

Julien
« Last Edit: April 03, 2009, 11:55:51 PM by madbrain »

Offline carpediem98

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Re: Suggestions for Supplements?????
« Reply #8 on: April 07, 2009, 04:00:59 AM »
Madbrain and Odyssey,

Don't forget to take your resveratrol and your selenium!

Resveratrol:
http://www.aidsnews.org/2006/12/resveratrol-hiv.html
http://www.aidsmap.com/en/news/6B6DC32A-B85E-4461-8592-6075406EA72C.asp

Selenium:
http://www.aidsmeds.com/articles/1667_11158.shtml
http://www.thebody.com/content/living/art39550.html

But with selenium, be careful to keep your intake under about 700 mcg a day... the safety limit is a little bit higher, but I like to give myself a little extra cushion of caution.
« Last Edit: April 09, 2009, 03:09:47 AM by carpediem98 »

Offline madbrain

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Re: Suggestions for Supplements?????
« Reply #9 on: April 08, 2009, 07:11:49 AM »
carpediem,

Believe me, I know about the selenium. :)

My multi-vitamin, which is NOW Adam, contains 200 mcg of selenium. That is the recommended effective dose in the studies of selenium in people with HIV. That's one of the reasons I really like that multi. Typical centrum will not have 200 mcg.

I don't know where you got 700 mg (I hope you are not taking milligrams ?!), but the upper intake limit for selenium is 400mcg (micrograms) .

See http://ods.od.nih.gov/factsheets/selenium.asp

I was on 275 mcg selenium for about a year, and had my blood selenium level checked - it was a bit elevated (though nowhere near selenosis-level). So I dropped it down to 200 - my only supplemental source of selenium is the multi-vitamin now.

re: resveratrol, your links don't point to any clinical trial having been done in people, only in vitro studies. There are so many things that have anti-HIV activity in vitro but haven't been verified in people. I already take 4 of them (listed above). The resveratrol is significantly more expensive than each of them so I feel like it's a better bet for me to take those 4 than to take just resveratrol, for the same cost. But either one could be a waste of money until there are clinical studies to confirm the in vitro activity in vivo.

Madbrain and Odyssey,

Don't forget to take your resveratrol and your selenium!

Resveratrol:
http://www.aidsnews.org/2006/12/resveratrol-hiv.html
http://www.aidsmap.com/en/news/6B6DC32A-B85E-4461-8592-6075406EA72C.asp

Selenium:
http://www.aidsmeds.com/articles/1667_11158.shtml
http://www.thebody.com/content/living/art39550.html

But with selenium, be careful to keep your intake under about 700 mg a day... the safety limit is a little bit higher, but I like to give myself a little extra cushion of caution.

Offline odyssey

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Re: Suggestions for Supplements?????
« Reply #10 on: April 08, 2009, 01:54:58 PM »
Yeah, I'm totally aware that supplementation won't do the job of HAART or replace the need for it when the time comes. Right now, my doc doesn't think I need HAART meds yet, but I will take them when its time. I'm just looking into complementary medicine to contribute to overall better health. Plus, my therapist, who has worked with a lot of poz people in the past, mentioned it. I don't want to do solely Western medicine type stuff when other options could also improve my well being. But I guess what I'm trying to make clear is that I do know that supplements aren't to be taken in place of HAART.
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline carpediem98

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Re: Suggestions for Supplements?????
« Reply #11 on: April 09, 2009, 03:47:20 AM »
Hey there,
Yes, that mg was a typo, which I've corrected.  :)

I did a lot of reading over the summer and fall, and several sources suggested that 800 mcg is the lower limit of the danger zone.  I don't like to admit being wrong any more than anyone else does... but it looks like your sources are far better and better-supported, on reading again.  First of all, the stuff that I can find seems far less conclusive, comprehensive, or authoritative than your source:

http://www.diagnose-me.com/treat/T32782.html
http://ccforum.com/content/11/4/153

Second of all, I can't find the sources that led me to my apparently incorrect position on how much selenium one should get.  Either I read incorrectly last fall, or I memorized it incorrectly, or what I read has been revised/removed.  In either event, it seems clear you're correct.

Thank you for correcting me on that point.  My bloodwork hasn't shown elevated selenium levels (they're all "in range"), but I do have a couple of signs of selenium toxicity - specifically, fatigue and peripheral neuropathy (which has been a source of concern, since I'm not on any HIV medications). 

I will immediately adjust my selenium intake.  Thank you.  As much as I prefer to be Mr. Smartypants in any conversation, I have to concede this one with gratitude.

As for resveratrol, it may not have had many human trials yet, but from what I've read (and experienced) it really is worth it. 

Here's another study that ISN'T in vivo, but it also shows great potential. 

http://ccr.cancer.gov/news/frontiers/march2006/zeichner.asp

I stand by my assertion that we should all take our resveratrol!  ;)

Offline boxerman

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Re: Suggestions for Supplements?????
« Reply #12 on: April 10, 2009, 12:19:07 AM »
The important thing to remember, based on the research I did anyway, is the quality and formulation of the vitamins. Whether you are attempting to replicate a formula such as K-PAX
or just boost a multi that you are already taking, it's best that the vitamin is a powder within a capsule and  not in a hard pill form. Often these are formed using an edible wax that does not completely dissolve in our system. The temp required to dissolve properly is considerably higher than 98 degrees.

I would suggest reading all of the K-Pax info on their website. It will give you good info even if you choose not to use that brand. I give it some credit with helping both my t-cell increase and viral load reduction. I read a post that said it needed to be prescribed by a doc, which is untrue. Some states and cities have assistance programs that pay for all or part of it.
They worked with me and came up with an adequate amount of the vitamins for about $35 a month, including shipping. 

Hope this is helpful.

Offline madbrain

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Re: Suggestions for Supplements?????
« Reply #13 on: April 14, 2009, 04:53:50 PM »
boxerman,

Whether you are attempting to replicate a formula such as K-PAX
or just boost a multi that you are already taking, it's best that the vitamin is a powder within a capsule and  not in a hard pill form. Often these are formed using an edible wax that does not completely dissolve in our system. The temp required to dissolve properly is considerably higher than 98 degrees.

I don't think it's really settled that capsules are better than tablets. They each have their pros and cons. If you google you will find many articles on the subject. Here is a good one :
http://www.nowfoods.com/Quality/QualityNotes/M040088.htm

Offline FrederickGNP+USA

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Re: Suggestions for Supplements?????
« Reply #14 on: April 18, 2009, 12:19:27 PM »


Great information men,

My Name is Frederick and nice to meet you and again .. great information.

I have been using a gycol protein program and photo nutrient program for years available only through MannaTech.com.  Great stuff for it makes sense that cell to cell communication in whole rich natural nutrients is great for the immune system ,for most of the immune system is built off the many  gyco proteins coming from food and such.

It is really a shame that our healthcare professional are trained in RX drugs mostly and not in good supplements too, for I am a true believer, after 20 years of HIV and still healthy with complimenting my ARVs with the science of gycol proteins and photo nutrients... and wow my glycoprotein program give me energy and more when I can afford to buy them. 

But if one want a RX, for  600 dollars worth of Marino  most Docs  will prescribe it and the Feds will pay for it too.. very strange and can make one think, what’s up with this concepts, for again an example Docs will write prescription for this synthetic Marino  (traded marked) for 300 to 600 dollars or so a month, but cannot write or most don't believe in supplements  of glycol proteins or photo nutrients, for I am more of a natural guy myself when it comes to complimentary supplements and cheaper too.

Frederick Wright

Offline Inchlingblue

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Re: Suggestions for Supplements?????
« Reply #15 on: April 21, 2009, 03:07:26 PM »
GMHC has a section on supplements that I think is a good start as far as information on basic supplements that are good with HIV. I think some of their recommended dosages are a little high for some of the items (glutamine for example, and NAC) but it's a good list nonetheless.

I take most of the ones they mention. Because I eat a pretty healthy diet, and to save money, I take them every other day, not every day. Except for fish oil which I take every day and a regular multi-vitamin that I also take every day.

They also include a good list of what supplements to avoid (such as St. John's Wort).

I'm not on meds yet and when I do start meds, I'm not sure if I'll continue taking NAC or Astragalus, but the rest I'll take even on meds.

Link:

http://www.gmhc.org/health/nutrition/factsheets/dietary_supplements.html

Offline tommy246

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Re: Suggestions for Supplements?????
« Reply #16 on: April 25, 2009, 04:52:25 PM »
Kpax is a dietary supplement that had a clinical study in people with HIV/AIDS, and claims it can increase CD4s.

http://www.kpaxpharm.com/vitaminsandsupplements/immunesystemboosters/immune-support-4pack

It is somewhat expensive. You can recreate a similar formula if you are willing to take more pills / capsules by buying its individual ingredients.

My "K-pax equivalent" costs $1.57 / day, and consistent of 10 different products and totalling is 13 tablet/capsules, vs $2.52 a day and 8 capsules for K-Pax.


I would like to try this kpax formula  but can i buy this here in spain
The other supplements that I take which aren't in K-Pax that have also had support for HIV in some studies in people are :
- melatonin (at night). I take 1mg per night
- probiotics - acidophilus . I take 2 tablets of 3 billiions CFU per day
- coq10 . I take 200mg per day
- Panax Ginseng . I take 500 mg twice a day. This may help with your energy too.

I also take the following, which have some anti-HIV in vitro, but haven't been tested in people :
- EGCG . I take 400mg twice per day.
- Astragalus. I take 500mg twice per day.
- Quercetin. I take 500mg twice per day.

These additional 7 supplements amount to $1.18 per day.

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 odyssey

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Re: Suggestions for Supplements?????
« Reply #17 on: April 26, 2009, 06:50:27 PM »
Well, I spoke to my doctor about the supplements, and showed him the list of ones madbrain suggested. He was only able to really suggest two of them, based on empirical evidence, which were selenium and fish oil. But he did say that he wouldn't object to me trying any of the others. He didn't really know anything about EGCG however. He's a real evidence based kind of doc, and told me that almost of the others had mixed results, where some studies showed good results, other showed bad, etc. So I decided to just go with the selenium and fish oil for now, plus its cheaper too. I started the selenium a few days ago, and will add in the fish oil once I'm sure I'm not experiencing any side effects from the first supplement. I figure by not starting them together, if I have a problem, I'll know which one is causing it!
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline madbrain

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Re: Suggestions for Supplements?????
« Reply #18 on: April 27, 2009, 05:58:08 AM »
Odyssey,

Well, I spoke to my doctor about the supplements, and showed him the list of ones madbrain suggested. He was only able to really suggest two of them, based on empirical evidence, which were selenium and fish oil. But he did say that he wouldn't object to me trying any of the others. He didn't really know anything about EGCG however. He's a real evidence based kind of doc, and told me that almost of the others had mixed results, where some studies showed good results, other showed bad, etc. So I decided to just go with the selenium and fish oil for now, plus its cheaper too. I started the selenium a few days ago, and will add in the fish oil once I'm sure I'm not experiencing any side effects from the first supplement. I figure by not starting them together, if I have a problem, I'll know which one is causing it!

Interesting. I showed the current list to my doc a week ago, and he said that everything on it was good for me. He wrote me a prescription that included :
Melatonin
Omega-3
vitamin C
vitamin B6
multi-vitamin
acidophilus
vitamin D3 (for my deficiency)

The prescription means I get to buy those tax free in my FSA.
He approved of me taking all the others and put that in writing, but that was short of recommending them.

In that apointment the doc told me I just had my VL was 501, my lowest yet - pretty good with no HAART I think ! I don't know if the supplements have anything to do with it, but I was pretty happy. That was slightly mitigated my CD4 at only 581 which was not close to their peak, but it wasn't a new low either and the percentage at 35 is still pretty good. The doc did tell me that the trend is towards starting HAART a bit earlier now. At this time I still said that I would prefer to take a pass on it.

Offline Peter Staley

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Re: Suggestions for Supplements?????
« Reply #19 on: April 27, 2009, 09:12:00 AM »
Well, I spoke to my doctor about the supplements, and showed him the list of ones madbrain suggested. He was only able to really suggest two of them, based on empirical evidence, which were selenium and fish oil. But he did say that he wouldn't object to me trying any of the others. He didn't really know anything about EGCG however. He's a real evidence based kind of doc, and told me that almost of the others had mixed results, where some studies showed good results, other showed bad, etc. So I decided to just go with the selenium and fish oil for now, plus its cheaper too. I started the selenium a few days ago, and will add in the fish oil once I'm sure I'm not experiencing any side effects from the first supplement. I figure by not starting them together, if I have a problem, I'll know which one is causing it!

Odyssey -- I think your doc's more science-based view is a bit safer than Madbrain's doc.

The general problem with using supplements with HIV is that there haven't been any large controlled clinical trials in people with HIV, so we really don't know if they help (and don't harm!).  Sure, there have been lots of little trials over time, but as we have learned with supplements and cancer, the little trials rarely predict the results large controlled trials show (most of these large trials showed that many supplements don't prevent cancer, and some might even increase your risk of cancer -- see http://www.nytimes.com/2009/02/17/health/17well.html).

So with HIV, we're basically still playing a game of faith when it comes to vitamins and supplements.  Granted, if any of the ones that have been studied in smaller trials had a huge negative effect, we would probably have seen it.  So the downsides on the ones Madbrain takes are probably pretty limited (we hope).

Offline madbrain

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Re: Suggestions for Supplements?????
« Reply #20 on: April 28, 2009, 07:34:16 PM »
Peter,

Odyssey -- I think your doc's more science-based view is a bit safer than Madbrain's doc.

I don't think my doc's view is particularly unsafe.

I asked him why his recommendations only went so far (under half the supplements I take) , and he said that it was because the research on the others didn't appear in well-known journals that was peer-reviewed. I take that as meaning that he thought there was sufficient evidence to recommend the ones that he did prescribe as beneficial for HIV, but that he still thinks the other may be beneficial to general health, but he is just not convinced enough that they will help specifically with HIV. I have forwarded him more info about the research I did find, though.

Quote
So with HIV, we're basically still playing a game of faith when it comes to vitamins and supplements.  Granted, if any of the ones that have been studied in smaller trials had a huge negative effect, we would probably have seen it.  So the downsides on the ones Madbrain takes are probably pretty limited (we hope).

I essentially agree with you there. I wish there were more and larger trials of vitamins and supplements. It is just not happening. Especially in vivo. We are stuck with what we got and a lot of in vitro testing of many substances. For me, at this time, the alternative is between taking nothing (it's not time for HAART yet), and a bunch of substances that are at worst harmless or with no effect (waste of money), and at best beneficial, based on the limited available research. Anecdotal evidence seems to suggest it's the later for me so far, but of course it's fairly limited.

Offline Dachshund

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Re: Suggestions for Supplements?????
« Reply #21 on: April 29, 2009, 08:35:50 AM »
My first serious two years of meds (strict adherence) I supplemented my diet with copious amounts of alcohol and cocaine. I remained undetectable and my cd4's continued to rise. Despite repeated anecdotal evidence I provided to my doc and groovy lab results, I never could get my doc to write me a script for blow.
« Last Edit: April 29, 2009, 08:38:04 AM by Dachshund »

Offline BT65

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Re: Suggestions for Supplements?????
« Reply #22 on: April 29, 2009, 09:39:11 AM »
My first serious two years of meds (strict adherence) I supplemented my diet with copious amounts of alcohol and cocaine. I remained undetectable and my cd4's continued to rise. Despite repeated anecdotal evidence I provided to my doc and groovy lab results, I never could get my doc to write me a script for blow.

Hee hee :D
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Netsurferdude

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Re: Suggestions for Supplements?????
« Reply #23 on: April 29, 2009, 11:42:41 AM »
I know it's against policy to promote products but here in Soweto we have fantastic results with the Herbalife range of products.

Basically it is a protein shake with all the daily vitamins and minerals and nutrients according to daily RDA levels. They also take the multivitamin and fibre and herbs tablets to give them the extra fibre they need which is lacking in their diet and it keeps their bowels clean. They drink the Thermojetics "tea" which is an energy drink with green tea extracts and also the Aloe Concentrate drink which is a sweet aloe that helps with any bowel, kidney and bladder problems.

The reason they do so well is because it is a meal in liquid form. Many times they cannot swallow or don't want to eat but drinking a nutritious meal they can do, It can be mixed with any type of liquid from milk to water to fruit juice. This is very important because out in rural South Africa where there is no electricity, this type of highly nutritious meal can be kept on your shelve as it is in powder form in a container. Mix it with 2 or more scoops of shake powder in a shaker and you have the best nutrition in a glass.

Because it is soy protein based, it helps keep their lean body mass healthy which is very important.

I strongly believe that taking a high dose of a specific mineral and/or vitamin is not to correct way to go. One must use a complete well balanced regimen that feeds your body everything it needs at once.

I personally live on the shakes as well and would not know how I would ever be able to go back to eating the old way of eating I used to before.

Regards,

Paul.

Offline mecch

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Re: Suggestions for Supplements?????
« Reply #24 on: April 29, 2009, 12:24:34 PM »
I strongly believe that taking a high dose of a specific mineral and/or vitamin is not to correct way to go. One must use a complete well balanced regimen that feeds your body everything it needs at once.

I personally live on the shakes as well and would not know how I would ever be able to go back to eating the old way of eating I used to before.

Paul, with all due respect, what a load of CRAP. Maybe a commercial shake helps in a tough situation, -- that is, it is better than NO nutrition -- but one can hardly call a liquid shake diet a "complete well-ballanced regimen".

Rather than report you for shilling for a product, i prefer to leave your comment in all its naive glory.

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Netsurferdude

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Re: Suggestions for Supplements?????
« Reply #25 on: April 30, 2009, 08:01:11 AM »
Mecch,

Sorry, I didn't know you were such an expert. I suppose all the people who actually use "the product" (name withheld) are all wrong here in Spweto and their good health as a result is something all in their minds ?

I just wanted to share my experiences with the rest of the forum members. Not "shilling" any product. Use it or don't use it. I don't care.

Tell me, do you also flame others when they mention commercial products in the other threads the way you flamed me ?

Get a chill pill.

Offline Ann

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Re: Suggestions for Supplements?????
« Reply #26 on: April 30, 2009, 09:38:15 AM »

I know it's against policy to promote products but here in Soweto we have fantastic results with the Herbalife range of products.


Net, it's against policy to promote, with links to an on-line shop, a product that you will personally financially benefit from. It's perfectly fine to mention a product you use in your own life and are happy with.

And Mecch, while it's fine for you to question the benefit of a product someone uses and likes, in this particular instance there's no need to call the guy a shill. After all, many people here recommend the use of probiotics like Dannon, and nobody raises an eyebrow.

I know vegetarians here in the UK who use the Herbalife shakes and they swear by them. I used it for a while, but unfortunately, the only difference I personally saw was the money missing from my wallet. But if some people believe they get a benefit from something which is basically vitamins, proteins and minerals in a shake, who am I to argue? It's their money, after all.

Ann


PS - The Herbalife shakes are definitely  an acquired taste! Yucky! :P
« Last Edit: April 30, 2009, 09:42:51 AM by Ann »
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Offline mecch

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Re: Suggestions for Supplements?????
« Reply #27 on: April 30, 2009, 01:23:18 PM »
Hmm, both comments to me are worth consideration.

However, let's ask NetSurfer - are you an Herbalife rep - no profit involved for you in its use?

Anyway, I don't knock the product. I question the cost and the claim that it is a "complete well balanced regimen".

As i said, I think liquid diets might be called for in certain medical cases, but whole and freshly prepared food are the general recommendation to the vast majority of HIV+ people. 

I'm not an expert. Have taken several nutrition classes at a pretigious university's top nutrition department. Have been a professional cook and food buyer. 

You love a commercial industrial shake as opposed to what???  Is fresh food so hard to find, afford, and cook in SA?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: Suggestions for Supplements?????
« Reply #28 on: April 30, 2009, 02:19:57 PM »

However, let's ask NetSurfer - are you an Herbalife rep - no profit involved for you in its use?


Really, does it matter? He didn't say "hey, PM me if you want to buy this stuff off me" and he didn't even link to a Herbalife website.

I also rather doubt that when Net said, "I live on the stuff" that he meant it literally. The Herbalife literature states quite clearly that their products are SUPPLEMENTS and not exclusive diets.


As i said, I think liquid diets might be called for in certain medical cases, but whole and freshly prepared food are the general recommendation to the vast majority of HIV+ people.  

You love a commercial industrial shake as opposed to what???  Is fresh food so hard to find, afford, and cook in SA?


Well, he already answered that question:


The reason they do so well is because it is a meal in liquid form. Many times they cannot swallow or don't want to eat but drinking a nutritious meal they can do, It can be mixed with any type of liquid from milk to water to fruit juice. This is very important because out in rural South Africa where there is no electricity, this type of highly nutritious meal can be kept on your shelve as it is in powder form in a container. Mix it with 2 or more scoops of shake powder in a shaker and you have the best nutrition in a glass.


If it's helping people live with hiv in a resource-poor setting, then that's a good thing, no?


As Net said, take a chill pill already. ::)

Ann
« Last Edit: April 30, 2009, 02:21:41 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 mecch

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Re: Suggestions for Supplements?????
« Reply #29 on: April 30, 2009, 02:21:07 PM »
On second thought, Net, I found my answer in your first post:  

"As for the HIV situation in sunny South Africa it sure as hell is an epidemic. My wife is a full time Herbalife distributor and me part time and we do our work in Soweto. Every Saturday morning it can get difficult to get around Soweto as there are so many funeral processions on the way to the cemeteries mainly for people who died from AIDS. Nobody wants to admit it and have excuses for dying from pneumonia, diabetes, high blood pressure, heart attack, stroke etc but we all know the real reasons but it is not spoken about because of the stigma.

We have helped a lot of HIV+ people regain their health when starting their HAART treatment with incredible results. I am busy putting a basic HIV/AIDS Powerpoint presentation together to actually teach people what HIV is and how it infects. When I go to homes of sick people where the whole family is HIV+ from husband to wife to children it can get very difficult to educate them and give them hope. The biggest barrier is the cultural one where talking about sex and anything related to it is taboo."

So, anyway, welcome to these forums and I do not mean to "FLAME" you. However, put your interests out there man.  
So what you are saying is that a shake filled with supplements is good for people suffering from wasting? I'll buy that.  
But why a Herbalife product?
Herbalife is a PYRAMID SCHEME and was founded by a saleman, not a nutritionist or scientist, based on a lie about his mother. He made hundreds of millions of dollars off this company. It's not a sham company, the products are controversial however.  

The point is, SOWETO is quite poor. Why would any community want to see its precious nutrition dollars fleeing the country to go into the pockets of Herbalife executives and stockholders.  
Couldn't local foods be fresher, more nutritious?

THe FIRST thing Herbalife teachers "distributers" is to get more distributers. The product is secondary. Its a gross siphoning of money spent of food that does not get returned in quality of food. A lot of every dollar spent is going to profit of many hands up the pyramid, and Herbalife itself.

I am NOT content to see this in these columns, sorry. And shall NOT back down on this.

However, not wanting to hjack this thread any further, I welcome the discussion in its proper place.

Modified: And Ann, read the post again. A fair amount of the wording sounds like instructions and a sales pitch.  I personally, did not see his "I live on the stuff" as him being obviously exaggerating.

And Net, I do NOT mean to begrudge you your good works with the HIV community. Anything that helps, god bless.  But please, i do not feel your post was transparent as to your personal interest, and what exactly this particular product is.
« Last Edit: April 30, 2009, 02:34:10 PM by mecch »
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Offline Netsurferdude

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Re: Suggestions for Supplements?????
« Reply #30 on: April 30, 2009, 06:55:32 PM »
Mecch,

Let's clear this up once and for all.

Yes we are distributors as you have pointed out in your message above. However we do not do the business the way you describe it though. What we do is we run what is called a nutrition club or as we call it here a Bophelo Impilo club. What happens there is the following :

When a person comes in we take down their details and ask them a whole series of standard questions concerning mainly what they eat, how they cook their food, what health issues they may have. We then take their blood pressure with a wrist BP monitor as high BP is a big issue here together with type II diabetes and obesity caused by their poor diet. This also leads to elevated levels of strokes in the community. We record everything and keep it on file. The 2nd time they come, they will get a number so that it is easy for us to pull their details out again and carry off where we left of last time.

They pay us R20 (oh shock !!, money, :o) that's about $2. For that they get a shake made from one of the Herbalife shakes in water and half a banana and an extra spoon of protein powder all mixed up in a blender to get a smoothie shake. They also get a cup of the Thermojetics "tea" which is an herbal energy drink. They also get a cup of the Aloe concentrate which settles their intestinal problems.

We then sit down and start teaching the person about eating a healthy diet of fruits and vegetables, drinking plenty of water and so on. We ask them to come back for a 10 day course if they can afford to and pay that $2 each day. Every day we do the same and teach them something new about living an healthy lifestyle for those 10 days. Some people have been coming since day 1, some come for the 10 days, some come only when they can afford to pay. We don't chase anyone to sign up and don't force anything on anyone. My wife does house calls to the old people who cannot walk to our nutrition club and prepares everything there for them.

The results of introducing such good nutrition to the people whether POZ or not together with education on what they should be eating and how they should be cooking their food instead of their staple diet of deep fried fatty red meat with a stiff maize meal porridge 3 x a day is very rewarding. When you get an 85 year old lady sitting in front of you thinking that feeling almost dead is normal for her age, coming back for her 2nd day asking me what I gave her the previous day because she never felt so much energy in her entire life, then you know you have something good on your hands.

When you have a 24 year old POZ girl whose heart rate on day 1 was 128bpm (resting) and an extremely low BP of about 90/60 and then have those numbers change to 100bpm and 108/70 by day 8 then you know you have something good. BTW when she eventually got herself tested by a volunteer councillor we also later found out she had TB and had to go for her 6 month treatment to hospital for that as well.

You ask me why Herbalife because of your concerns of it being "controversial products" ? Well to start with all the products have been tested and approved by our medicines control council in South Africa. Not only that, we fall under the EMEA region and that means we have to adhere to strict EU regulations which by the way are much stricter than your FDA regulations. I have tried many other products but here we have many many "cures" for HIV and people are so desperate that they will try anything to get better including talking into a microphone connected to a notebook computer running software analyzing your voice and diagnosing your health problems. You then get bottles of brown liquid to drink but instead you end up with severe rashes under your arms. You get the traditional herbalists or "sangomas" who talk to your ancestors and then give you some herbs to eat and/or drink or whatever. Imagine getting an enema using a hollow bull's horn.

I am very happy with the results I get from what I am doing and am very happy with the science and research involved behind the products and the doctors involved in this research. Perhaps you should revisit that side of Herbalife and update yourself in that aspect. and don't let the whole pyramid scheme get in the way.

Soweto is very poor as you say but the people here are not stupid. They will only spend their precious nutrition dollars on a product that produces results. Besides ourselves, we have plenty customers who have tried all the other products on the market and swear by the Herbalife products. As they say, the proof is in the pudding.

As for where the money goes, Herbalife is like any other MLM system. 73% of all money gets paid back to it's distributors. The rest is invested in the product, running the company and CASA Herbalife homes around the world which by the way donates money to or own Acres of Love home in Johannesburg which takes in abandoned / orphaned HIV+ babies and looks after them and if I am correct also donates to an HIV home in Zambia as well. And remember, if you are a company listed on any stock exchange, obviously you have to keep your stockholders happy. If you don't well... think about Big Pharma and the price we all pay for our meds.

As for spending your dollars on local fresher food, we encourage that of course but in the African culture veggies are mostly eaten on Sundays. The rest of the days are carbs like maize, white bread, white rice and lots of fatty deep fried red meat. Therefore the education we give during the 10 days on changing that to a more colourful fruit and veggie diet EVERY DAY not just Sundays.

As for my "financial" return on what I am doing, how much profit am I making on $2 ? We do it to help people with their health. If perhaps in 10 or 20 years time we may be making a small living of our "downline" then that is a bonus. If you think I was trying to recruit or sell, as Ann said, I did not do anything of the sorts and if you do think so well then I cannot help you with that.

I hope I have made myself clear to you. I consider this closed as well.

Thank you,

Paul.

Offline mecch

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Re: Suggestions for Supplements?????
« Reply #31 on: April 30, 2009, 08:41:47 PM »
You seem to be doing a number of helpful things, but I, personally, feel that your nutritional recommendations are commercially based and self interested, and I just do not think this falls correctly in this Nutrition thread. 

I don't see what they have to with the original poster's situation or enviroment either, though you generously explain your own environment, thank you.

But, then, i am not the moderator. 

This a forum for HIV+ people and, some threads, for their partners and family.  And one thread for people who think they might be infected.  Are you HIV+?  Is your wife?

Why is Herbalife such an important part of your postings here?

Why would you decounsel supplements to the poster in this thread, but then mention Herbalife as a "complete regimen".  He (she) isn't living or experiencing any of the situations you describe in Soweto.

Are you a nutritionist? Any nutritional training?

Ok, so its just my opinion, but Herbalife the company IS a suspect model of healthy food production and distribution. And its "science" is flimsy at best. You can't compare is profits to PHARMA profits since PHARMA has delivered a product to the HIV+ community that is godawfully expensive but WORKS and is almost universally accepted and supported by science and medicine around the world.

Herbalife founders were frauds in many ways:
http://www.pyramidschemealert.org/PSAMain/news/HerbalifeChargedwithFraud.html

Hospitals in Switzerland have linked Herbalife to kidney failure.
http://209.85.129.132/search?q=cache:nJYyS62GMZMJ:www.medicalforum.ch/pdf/pdf_d/2008/Suppl_41.pdf+herbalife+kidney+bern+switzerland&cd=8&hl=en&ct=clnk&gl=ch&client=firefox-a

Has the SA government recommended Herbalife for HIV+ undernourished people? 

This is a forum where HIV+ people share personal experience with diet and nutrition, and share links to groups and information and literature that specifically investigate HIV and nutrition and supplements.

For instance Madbrain uses a LOT of supplements and the judgement is out on how many of them most HIV specialists would recommend, based on science, but then there are other ways to go about investigating efficacy.

You say you are doing what you do to help people and not for financial incentive.  Bravo.
Personally, I believe the first and not the second, sorry, just my own caustic opinion.

Open your own thread then and share out all the references to these doctors and scientists or social workers or health policy people who have investigated Herbalife and its value for undernourished HIV+ people in South Africa, or anywhere.

I've read quite a few scholarly journal articles on this subject, HIV/AIDS in southern africa, some written by South African experts.  SA's challenge, 2009, concerning Nutrition and HIV and ARV (HAART) is quite unique, because of those lost years when your Government officially pushed nutrition and herbs as HIV treatment, as opposed to ARVs, and the heritage of aids denialists and traditional healing groups.  From a policy standpoint, one needs a push for everything - Nutrition supply for HIV+, nutrition education, and HAART for HIV+.  Perhaps you have found an application for this product that helps some immediate individual situations but in a larger perspective I would be VERY curious to see ANY evidence that Herbalife is what is called for in such situations.  And I would be very curious to see any registered south african dieticien recommending Herbalife in a clinical setting to HIV+ people, or doing nutritional education based on this range of products.

Sorry for the hijack.








 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline odyssey

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Re: Suggestions for Supplements?????
« Reply #32 on: April 30, 2009, 09:40:47 PM »
I would appreciate if people wouldn't hijack the thread I started! I started this thread to ask for advice about supplements, and now it has turned into a debate about the ethiics of a certain supplement company. Please keep it on topic guys and gals! Thanks!
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline mecch

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Re: Suggestions for Supplements?????
« Reply #33 on: May 01, 2009, 06:21:53 AM »
After I sero-converted, I started to read about supplements on the Internet on various sites.

One of the more comprehensive and concise sources of information was CATIE
Canadian AIDS Treatment Information and Exchange

They have one page discussions of dozens of supplements:

http://www.catie.ca/supple-e.nsf/supplement+sheets

Peter Staley's post to you gives the outlines about what you need to consider vis-a-vis supplements and HIV. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Netsurferdude

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Re: Suggestions for Supplements?????
« Reply #34 on: May 01, 2009, 10:57:48 AM »
Odyssey,

Please accept my apologies. I did not want this either. I just wanted to share with you and others what I was doing.

If I had known this was going to happen I would never have posted here.

Once again, my apologies.

Kind regards,

Paul.

Offline risred1

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Re: Suggestions for Supplements?????
« Reply #35 on: May 01, 2009, 03:31:53 PM »
As my need for meds draws nearer, and my experience with supplements increases, my viewpoint does evolve.

Largely, what i've done with my supplements program, is mostly based upon KPAX principles. (I have replicated the formula from my nutritional ASO).

I also add Ginsing (Korean) because without it, my energy level goes so low...

And I have a few alternative supplements that are really for the effects of HIV. MSM, 7 Keto DHEA....

But ultimately and many good people on the board point out, that good health does not come in a pill.

Good health involves good diet and exercise and quality sleep and managing your stress.

Sure taking pills does perhaps give you a sense of control. But of course for the most part, HIV has its own agenda and will do what its going to do. Perhaps supplements can delay need for meds, or offset some of the side effects of HIV, such as diarrhea, low engergy, PN... but they clearly do not stop HIV. I have never had a VL below 10k since I've been diagnosed. And over time, have seen my VL spike up to 100k +. And over time my CD4 has fluctuated in the 400's, but never more than that, and as of late is creeping down.

My last ditch efforts now involved the other aspects of good health. And trying to get the exercise, sleep and eating a better diet. And I'm fully aware that at this point, it may have very little to do with my blood work as my next test determines weather it is time to go on meds.

The supplement question is fine. Don't ignore the other aspects of good health. These things can be culmative and can have other benefits down the line as ones HIV advances.
risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

Offline lngtrmpz1

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Re: Suggestions for Supplements?????
« Reply #36 on: May 08, 2009, 05:07:03 PM »
Hi all...
I'd like to share my regimen but could also use some advice.

I just take some basics -

B-50 Complex - no A - Z, just the B's - 50mg of most except for folic acid which is measured in mcg's (400 I think, for balance). Was advised b my doc not to take the megadoses.

C - 1000mg a day (1 500mg 2x's a day - better for absorption)

zinc - 50mg (1 a day)

acidophilus (1 billion cfu's  1 tab a day) - Dr. recommended. Cured the diarrhea caused by the meds - solid stools every day now. First, I tried the 90/10% split with Acidophilus/Pectin 100m cfu, but had to take 3 pills a day, so I switched to the higher dose.

calcium - 1200mg day - powdered form - best for absorption (two heaping 500mg scoops a day) - Dr. recommended to prevent bone loss caused by Viread - I don't drink milk. Do eat nonfat yogurt but not every day. 

These seem to do it for me, overall, but  I could really use more specific advice on natural supplements for lowering triglycerides - I don't have a weight problem, cholesterol is kept pretty much in check. It's all meds induced. The info I read seems to be all over the map. I can't get a feel for dosages, good quality, poor quality, etc. I can't seem to find info on specific foods to eat either for that. It's all about lowering cholesterol  and  all the info I read assumes that I should go on a weight loss program. I don't need to diet/lose wieght. I'm NOT taking additional statins, so that is not an option. Don't eat many sweet foods at all. Don't consume much alcohol (2 beers a week, if that).

triglycercides - out the roof - 400-600, even 40mg a day of litpitor (I refuse to take additional statins - too hard on the liver, I had a reaction to Tricor, no thanks) - Before the lipitor, they were in the 750 range, consistently. Starting this month, I'll be participating in a blind/control study of fish oil/flaxseed conducted by JHU - I'll report my results here as I go along.. Wish me luck. Thanks

Age: 47
as of 4/27/09 -
vl - <50 ppl (consdidered undetectable) - consistent for 5 years on this regimen
cd4's -  935/35%
ht/wt - 5'9/155lbs
tri's - 510
cholesterol - uncalculable due to high tri's






Offline Inchlingblue

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Re: Suggestions for Supplements?????
« Reply #37 on: May 08, 2009, 06:43:06 PM »
These seem to do it for me, overall, but  I could really use more specific advice on natural supplements for lowering triglycerides -

I take and recommend: Omega-3 fish oils, flaxseed oil caps (and also ground flaxseed which I use in smoothies), 200 mcg. of selenium, lecithin and fiber (psyllium). Aerobic exercise is also good.

The link below has some excellent suggestions:

http://www.joyfullivingservices.com/triglycerides.html

Offline lngtrmpz1

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Re: Suggestions for Supplements?????
« Reply #38 on: May 08, 2009, 07:54:18 PM »
Thanks for the info, Inch. Much appreesh. I will be on a fish oil/flaxseed study very soon, so I should hold off buying it myself until that is overwith. I don't yet whether I'll be given the real stuff, or a placebo, and i don't want to skew the numbers. However, after the study, I'll be given the real supplement for free -- for awhile, I don't know how long yet.

As far as selenium: I've been advised by 2 different dr's NOT to take it because it's easy to OD on. One of those dr's was my old internist who had a special interest in HIV and diet. 

Selenium is literally in almost every morsel of food we eat every day. Not just minute amounts, but lots of it. Too much selenium can have some very negative effects (I forget exactly what without researching it again).  Again, the lack of info about specific common dosages iis frustrating.

Btw, what is your fish oil/flaxseed dosage?  There many different dosages and many different brands - some good, some bad... Excercise - Yes, I've been on and off that bandwagon for years... off for the last 4 months... but regular excercise will bring the tri's down about 200 points. I started up again this week. GOD, I'm sore.. LOL

Thanks for your input, though

Offline odyssey

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Re: Suggestions for Supplements?????
« Reply #39 on: May 09, 2009, 07:43:38 PM »
Well, I started the selenium a few weeks ago, and had no side effects, so started the fish oil this week. They're 1200 mg odor-free capsules with a recommended dose of 3 per day. I tried one in the morning and two at night, because I already take meds at those times anyway so it'd be easy to remember. The problem is, they seem to give me gas, abdominal pain, and subsequent bowel difficulties nearing diarrhea. Sorry if this is tmi. The first time this happened, I stopped the fish oil, and the problem went away. I figured maybe it was a fluke, so I tried again, and the same thing happened. Has anyone else had this problem? Its really unpleasant and has caused me to not take them for the time being. I really would like to find a way to prevent this from happening because fish oil has multiple benefits. Any thoughts?
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline Ric Wilke

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Re: Suggestions for Supplements?????
« Reply #40 on: May 09, 2009, 09:58:34 PM »
My full list of supplements.  Started some in 2001* and have added overs over the past eight years.

*Centrum Silver A-Zinc  QD  (yes, I'm almost 59)
*Vitamin B-6  50mg  QD
*Ester-C  500mg  BID
*Calcium w/ Vitamin D  600mg/200 I.D.  BID
Selenium  200 mcg  QD
Alpha Lopic Acid  600mg  QD
DHEA  25mg  QD  (helps keep the "lead in my pencil")

(QD=Once a day, BID=Twice a day)

Total cost less than $2.00 per day.
« Last Edit: May 09, 2009, 10:08:02 PM by Ric Wilke »

Offline madbrain

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Re: Suggestions for Supplements?????
« Reply #41 on: May 11, 2009, 05:11:58 AM »
Well, I started the selenium a few weeks ago, and had no side effects, so started the fish oil this week. They're 1200 mg odor-free capsules with a recommended dose of 3 per day. I tried one in the morning and two at night, because I already take meds at those times anyway so it'd be easy to remember. The problem is, they seem to give me gas, abdominal pain, and subsequent bowel difficulties nearing diarrhea. Sorry if this is tmi. The first time this happened, I stopped the fish oil, and the problem went away. I figured maybe it was a fluke, so I tried again, and the same thing happened. Has anyone else had this problem? Its really unpleasant and has caused me to not take them for the time being. I really would like to find a way to prevent this from happening because fish oil has multiple benefits. Any thoughts?

My bf had this problem when taking 4 omega-3 gels of 1000mg at once in the evening. He had no problems with taking 2x1000 in the morning and the same in the evening now.
Since you have already tried taking 1 in the morning and 2 at night, I'm not sure what else you can do besides reduce/eliminate the dosage. Are you taking them with or without food ? Might want to try the other way around.

Offline mecch

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Re: Suggestions for Supplements?????
« Reply #42 on: May 11, 2009, 02:52:16 PM »
Its really unpleasant and has caused me to not take them for the time being. I really would like to find a way to prevent this from happening because fish oil has multiple benefits. Any thoughts?

Sounds like you are quite methodological about all this. So perhaps try a different brand or formulation, if you are determined to take this supplement.

Another suggestion is simply to eat fish. Imagine - how wholesome is that.

Read the wiki article on fish oil.
http://en.wikipedia.org/wiki/Fish_oil

Then read the AHA recommendation:  eat fatty fish:  several times a week!

http://www.americanheart.org/presenter.jhtml?identifier=4632

"Fatty fish like mackerel, lake trout, herring, sardines, albacore tuna and salmon are high in two kinds of omega-3 fatty acids, eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA)."

So the challenge is to eat the "cleanest" of these fish possible - because they can be filled with toxic impurities.

I eat tuna sandwiches, tuna in salads, etc. I happen to love anchovies and/or sardines on pizza! They are cheap and so delicious, don't use them sparingly!  Maybe its an acquired taste, but perhaps you could acquire it!

Wild, real smoked salmon - I buy it when I'm feeling flush, but will eat the cheapo farmed stuff too.

Smoked mackerel is a heavenly sandwich, and pretty cheap.    

I'm no expert but I'm pretty sure whole foods are preferable to supplements.

I take the fish oil supplements, and sometimes get gas, sometimes not.  On the days I eat fish, i skip the supplement.  Fish oil supplements are highly processed, afterall.

http://www.aboutomega3.com/which_fish_oil_production_is_the_right_way.html

It seems there are special qualities we should look for in selecting a supplement, even the type of fish its made from.  How many fish oil supplements actually give this information!


« Last Edit: May 11, 2009, 03:14:10 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline madbrain

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Re: Suggestions for Supplements?????
« Reply #43 on: May 11, 2009, 07:32:24 PM »
mecch,

Then read the AHA recommendation:  eat fatty fish:  several times a week!

http://www.americanheart.org/presenter.jhtml?identifier=4632

"Fatty fish like mackerel, lake trout, herring, sardines, albacore tuna and salmon are high in two kinds of omega-3 fatty acids, eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA)."

So the challenge is to eat the "cleanest" of these fish possible - because they can be filled with toxic impurities.

I eat tuna sandwiches, tuna in salads, etc. I happen to love anchovies and/or sardines on pizza! They are cheap and so delicious, don't use them sparingly!  Maybe its an acquired taste, but perhaps you could acquire it!

Unfortunately, real fish have their issues with mercury toxicity as well. Watch this video from CBS which aired in the bay area :
http://cbs5.com/consumer/tuna.mercury.test.2.951871.html

Quote
I'm no expert but I'm pretty sure whole foods are preferable to supplements.

I'm sure the real fish has other benefits. But if you only want the omega-3, the supplements may actually be safer than real fish because many of them are molecularly distilled which reduces the mercury content.

Quote
I take the fish oil supplements, and sometimes get gas, sometimes not.  On the days I eat fish, i skip the supplement.  Fish oil supplements are highly processed, afterall.

http://www.aboutomega3.com/which_fish_oil_production_is_the_right_way.html

It seems there are special qualities we should look for in selecting a supplement, even the type of fish its made from.  How many fish oil supplements actually give this information

The link you posted specifically mentions mercury.
The information to look for on an omega-3 supplement is whether it is molecularly distilled to eliminate contaminants such as mercury.
The brand I use, NOW foods, is molecularly distilled.
The Nature made brand omega-3, which is also available in many drugstores and Costco, is also molecularly distilled.

Offline odyssey

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Re: Suggestions for Supplements?????
« Reply #44 on: May 11, 2009, 08:28:36 PM »
Well, as much as I know eating fish would be good for me, I don't see it happening any time soon. Between my sensory issues and my issues around cooking/preparing food, eating fish just isn't feasible. I think for now, I will start with one capsule a day, taken with food. If that doesn't work, I'll take it without food. Hopefully it is just that my body was a tad shocked by the sudden onslaught of such a large amount. Then I could work up to 3 a day. If it doesn't work, I'll either try a different brand or ask my doctor why this might be happening. I took fish oil for awhile when I was around 17, and I don't remember having any problems, so hopefully I can get this working too.
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline mecch

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Re: Suggestions for Supplements?????
« Reply #45 on: May 12, 2009, 05:51:26 AM »
Odyssey, whatever works for you. I encourage you, eventually, to include cooking preparing and eating food into the "things you do" to keep well. 

Madbrain, I did mention the impurities and that is why I said one should search for clean fish - bio. etc. Thanks for the info on which brands are refined.

Generally you'll see in this thread that I come from the position that food is preferable to supplements. Nothing wrong with suppplements, even helpful, but one should really be asking very specific questions about supplements to knowledgeable trained people and considering their answers, even comparing them.  We don't necessarily have nutritionists or herbalists and if we do, do we have a doctor who will work with a patient who is taking advice from more than one camp?  That's the idea situation. 

When we wade into the Net we have to keep our defenses and "literacy" up when considering adding multiple supplements - the manufacturers themselves write very persuasive texts, designed to sell, and the structures around the selling of supplements for HIV - buyer's clubs, or blogs, or online supplement shops, well, they provide a good service and some information but also some selling...  NYBuyer's Club a good example. 

For instance Kpax showed some benefit for treatment naive (no HAART) HIV+, and the group has been successful getting approval for insurance coverage here and there.  That's good right. But is it still beneficial to take this vitamin mix when you are on HAART?  That wasn't tested.  And the "science" itself was slight and doctors do question the benefit, for anyone, and rather frequently:
http://www.thebody.com/Forums/AIDS/Meds/Current/Q182879.html?h89o

For me, at least, it's easy "to slide" into a sort of obsessive compulsive "suspension of disbelief" and want to take everything possible, when I am reading around about supplements and talking to people into supplementation. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline madbrain

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Re: Suggestions for Supplements?????
« Reply #46 on: May 12, 2009, 06:04:45 AM »
Generally you'll see in this thread that I come from the position that food is preferable to supplements. Nothing wrong with suppplements, even helpful, but one should really be asking very specific questions about supplements to knowledgeable trained people and considering their answers, even comparing them.  We don't necessarily have nutritionists or herbalists and if we do, do we have a doctor who will work with a patient who is taking advice from more than one camp?  That's the idea situation. 

Indeed. But in the case of omega-3, if you need to have some daily (as many of us do, for various reasons), it seems clear that the supplement form is superior, because eating fish daily would result in too much toxicity.

 


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