POZ Community Forums
Meds, Mind, Body & Benefits => Nutrition & HIV => Topic started by: wildrunner8 on December 01, 2008, 11:23:46 pm
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Hi all,
First off I just want to say that this is an AWESOME forum. I spent many hours after I was diagnosed positive searching the web for information on HIV and this forum simplified that search greatly.
The reason I'm posting is to find information on supplements. I'm interested in everyone's thoughts... is there a good web resource that simplifies the process of sorting through all the information (and garbage) out there? What do different people take? Right now I'm just taking a solid multivitamin (Perfect Blend by Super Nutrition) as well as eating a balanced diet (not so much exercise though..haha).
Thanks in advance!
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Hey Wild,
Welcome to the forums!!! There is a LOT of info out there about supplements and not everyone is pro taking them so wade through all the info, research and opinions carefully. There are many members on here that have links to studies and know much more about supplements then I do. So I will leave this up to them. I personally take, a daily multi, Fish oil, Selenium, Green Tea Extract, B-12 daily as well as drink a lot of hot-tea and go for a run everyday. I hope you find all the info you are searching for! Sorry I am not more help.
~J
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hey,
Hi all,
First off I just want to say that this is an AWESOME forum. I spent many hours after I was diagnosed positive searching the web for information on HIV and this forum simplified that search greatly.
Sorry about your new diagnosis, but welcome to the forum.
The reason I'm posting is to find information on supplements. I'm interested in everyone's thoughts... is there a good web resource that simplifies the process of sorting through all the information (and garbage) out there?
There are tons of sources. Perhaps too many. I use a combination of several. Thebody has some good information, but some of it is outdated now.
Another very good one is Pubmed : http://www.ncbi.nlm.nih.gov/pubmed/ . I often search on terms like HIV, AIDS, CD4, and the name of a supplement, to find if there have been studies.
I also like scholar.google.com which is a search engine for scientific literature. I do similar searches there.
Regardless of how you do it, it's not going to be simple. But these are tools that help.
What do different people take?
I suggest you browse some of the threads in this forum some more. This question gets asked around here a lot.
Right now I'm just taking a solid multivitamin (Perfect Blend by Super Nutrition) as well as eating a balanced diet (not so much exercise though..haha).
Thanks in advance!
A good multi is recommended for everyone with HIV. Of course there are varying opinions on the definition of good. I didn't know about the one you take, but I looked at it and it seems like a good formula. One thing I didn't find is whether that manufacturer followed GMP (good manufacturing practices). This is important to ensure the supplement you are taking really contains what is stated on the bottle.
Oh, and by the way, great labs !
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Please check with your doctor before adding supplements you're not totally familiar with.
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(http://homepage.mac.com/bedstuy65/.Pictures/capslock.jpg)
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Seth,
The only, ONLY thing conclusively proven to prevent hiv from turning into "full-blown-aids" (how I HATE that expression!) is antiretrovirals.
And please lose the cap-lock. Makes my tired old hiv-infected eyes go wonky. ::)
Ann
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... not to mention writing your email out like that on a web forum will generate spam to your mail account
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THATS HOW I KNEW TOO TAKE MY LOVER, 'OFF' FROM HIS HAART-THERYPY, N HIS NUMBERS GOT ''BETTER'', I REPEAT, ''BETTER'', ON THESE PRODUCTS, THAN ON HIS MEDS. PLEASE CONTACT ME FOR A MORE DETAILED DESCRIPTION ON THESE AMAZING PRODUCTS.
This is a dangerous claim to make, and I am frankly surprised that this post is allowed to stand on AM.
BTW, do I get points for reading it all the way through? I mean damn.
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This is a dangerous claim to make, and I am frankly surprised that this post is allowed to stand on AM.
BTW, do I get points for reading it all the way through? I mean damn.
I'm surprised also and hope no one takes this advice.
And Jonathan, if you get points, then so do I damn it!
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This is a dangerous claim to make, and I am frankly surprised that this post is allowed to stand on AM.
It's just an individual anecdote. No generalizations should be made from it, regardless of its veracity.
I'm not particularly inclined to believe it, but it's still possible the guy became resistant to his meds and was no longer getting benefit and only the side effects. If the supplements that he started using had any beneficial effect at all then that could explain the results.
However, if his condition was serious enough to have gone on meds in the first place, it seems to me that he should have switched to a different med that worked or had fewer side effects, and not to using supplements as a substitute. Or a combination of new meds and supplements.
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1) Would some moderator please knock this Seth person for hawking some stuff in these forums. Thank you.
2) CATIE - Candadian AIDS Treatment Information Exchange has a great many fact sheets on supplements.
http://www.catie.ca/supple-e.nsf
3) New York Buyer's Club
http://www.newyorkbuyersclub.org/
I agree with BT65 - good idea to check all supplements with an HIV specialist, and if your HIV specialist really poo-poos them, but you are still interested, then check with doctors who are open to "complementary" treatment.
My HIV ID told me one of the big theories of aging and body damage - oxidative stress - that is supposedly countered by taking anti-oxidant supplements, seems to be being disproven these days.
He is against supplements because they haven't been proved. The famous HIV specialist Jon Kaiser thinks otherwise, finding supplements especially helpful for untreated HIV+ people. But then, he's hawking supplements. But then again, many US ADAP programs are paying for the supplements, and he says hes not making a profit.
Good luck.
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I missed the additional concerns about Seth's posts when I first read it yesterday - I was cross-eyed by the time I got that far.
And why didn't anyone use the report button? Just because I posted something doesn't mean I didn't miss something of concern in the post. We mods appreciate the help from eagle-eyed members reporting this stuff.
I've used the report button myself now, because I want input from the rest of the team.
Ann
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It's just an individual anecdote. No generalizations should be made from it, regardless of its veracity.
True. But hawking alternative therapies in lieu of established HIV meds is a direct violation of the rules of this site.
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I missed the additional concerns about Seth's posts when I first read it yesterday - I was cross-eyed by the time I got that far.
And why didn't anyone use the report button? Just because I posted something doesn't mean I didn't miss something of concern in the post. We mods appreciate the help from eagle-eyed members reporting this stuff.
I've used the report button myself now, because I want input from the rest of the team.
Ann
I am sorry I did not report it myself. I assumed you had read the entire thing (though I understand the cross eyed part) and figured it was AM worthy.
Personally, I would like very much to see claims that fell far outside the purview of peer reviewed science treated with the scrutiny it deserves, and those who continue to proselytise such dangerous claims should be similarly scrutinized.
Far more people, HIV negative and positive, read these forums than post. And giving someone latitude to overthrow HIV transmission and treatment science in favor of fairness lowers the credibility of this site.
Jonathan
(amazed that some of the offenders have their own named threads)
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Thanks to the moderators for keeping it intelligent!
And now back to the original poster's question -
I happen to have just read a recent, intelligent response to a similar question about supplements, on The Body
http://www.thebody.com/Forums/AIDS/Nutrition/Current/Q196964.html
For what its worth - I started drinking green tea by the bucket when I seroconverted and it did nothing for my viral load, which soared, because that's my genetic lot in life... Was eating fresh garlic, too. And doing that old-fashioned lemon olive oil drink. Quickly added the full gamut of KPAX like supplements. All that, and meditation, and shrink, and anti-depressant. Nevertheless, stratospheric viral loads.
My 1 unique experience: trust the anti-retroviral medicine, be cautious with the rest - which is what the expert on The Body advises as well.
PS
NAC smells rancid to me.
CoQ10 - friggin expensive but i take it, probably pissing away money.
Fish Oils - I take most days but ID says don't bother. Also eat a lot of anchovies and salmon. I love anchovy pizza!
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We deleted Seth's post.
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mecch,
http://www.thebody.com/Forums/AIDS/Nutrition/Current/Q196964.html
For what its worth - I started drinking green tea by the bucket when I seroconverted and it did nothing for my viral load, which soared, because that's my genetic lot in life... Was eating fresh garlic, too. And doing that old-fashioned lemon olive oil drink. Quickly added the full gamut of KPAX like supplements. All that, and meditation, and shrink, and anti-depressant. Nevertheless, stratospheric viral loads.
My experience is different - I have been taken a large number of supplements for about 15 months, including all 5 cited in thebody article in dosages that fall within the ranges recommended there, and I have maintained a very low very viral load and no notable tcell decline.
However, I am still not sure how much correlation there is between my taking the supplements, and my labs. Like you, I think it may be my genetic lot in life as well. It's very possible that I could stop all of them tomorrow, and not see a whole lot of difference. I probably won't do that unless I get strapped for cash.
I have to say, if I had your labs, I would have gone on HAART right away at the first or second lab that you got. I wouldn't have spent time experimenting with supplements before going on HAART. Afterwards, sure. My bf's labs weren't as bad as yours - his VL was much lower, but his tcells and % were declining and in your range - but I still pushed him to go on HAART ASAP. The supplements came later. He has maintained an undetectable VL all along with the HAART, but his tcells are still not within normal range, at 300 to 400 mostly, and 19% is the best he has gotten yet after 1.5 years of HAART. He hasn't missed a single dose of his HAART in over a year, but he very often skips the daily bottle of supplements that I fill for him, sometimes he skips an entire week at a time. Some people like supplements and some don't.
PS
NAC smells rancid to me.
CoQ10 - friggin expensive but i take it, probably pissing away money.
Fish Oils - I take most days but ID says don't bother. Also eat a lot of anchovies and salmon. I love anchovy pizza!
Hmm. I take the Jarrow NAC 600mg tablets and it doesn't smell like anything to me.
I started taking Coq10 again a few months ago. It's not cheap, about the same cost as my multi. I take 400mg.
As for fish oil, I take it mostly for mood, being bipolar, it is recommended. I wasn't aware that it could help for HIV.
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I have to say, if I had your labs, I would have gone on HAART right away at the first or second lab that you got. I wouldn't have spent time experimenting with supplements before going on HAART.
Madbrain, a person can't demand HAART and get it, the ID has to sign off. I felt crappy at seroconversion, then fine again. After my first labs, the ID told me to go on holiday to Italy. When I came back he was on holiday. Zoot. I saw my generalist who did labs. He conferred with specialists, who said I could be having very long seroconversion, since my CD4s were rising. No HAART recommended. A month later the ID did labs again and said he thought my body is one that doesn't fight HIV very well, if at all, but it was strange my t-cells weren't going done to 0.
You know, maybe everything I was doing with diet and supplements and mindfulness, was helping my t-cells, but as the ID says, they just can't do much against HIV. Who the f** knows.
Anyway, got the HAART. At last labs, with viral loads at close to undetectable, he said my defenses actually did contribute to the success of the HAART, so maybe I fight it a little bit.
I've always used supplements, so it seemed like a good bet to use them again. Pity no government or university can pay to do a lot more research. However HAART gives a lot of bang for the buck. Very big bucks.
Glad you and bf are both well, best wishes.
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My HIV ID told me one of the big theories of aging and body damage - oxidative stress - that is supposedly countered by taking anti-oxidant supplements, seems to be being disproven these days.
Here, there's a post about it in these forums too,
http://forums.poz.com/index.php?topic=24529.0
I think this will have implications for the "pro" arguments for supplements..
Best
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Madbrain, a person can't demand HAART and get it, the ID has to sign off.
Hmm, my HIV doc has always told me I could start HAART at any time if I wanted to and he would write the prescription.
After my first labs, the ID told me to go on holiday to Italy.
I shudder to ask ... But usually I don't let my doc decide on my holidays :)
When I came back he was on holiday. Zoot. I saw my generalist who did labs. He conferred with specialists, who said I could be having very long seroconversion, since my CD4s were rising. No HAART recommended.
Too bad you weren't able to see another specialist directly yourself while your doctor was away.
You know, maybe everything I was doing with diet and supplements and mindfulness, was helping my t-cells, but as the ID says, they just can't do much against HIV. Who the f** knows.
Could be that they helped a bit, very hard to tell without studies. I went through the mindfulness program too :) I got my highest CD4 % at that time. It must have helped.
I've always used supplements, so it seemed like a good bet to use them again. Pity no government or university can pay to do a lot more research.
There is still a lot of research on supplements that you can find if you search for it in the right places.
Glad you and bf are both well, best wishes.
Thanks, to you as well.
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Mad, I believe Mecch lives in another country (not the States), so things are probably much different there. Mecch, correct me if I'm wrong.
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Madbrain, your situation for getting medicine is the same as mine, then. Its your ID who will write the perscription. So you found one who says he will write it whenever you ask. Other IDs will not do this. There are treatment protocals and whoever is paying top dollar for the treatment (government, insurance, etc) is going to want some accountabilitiy, so there is pressure on doctors. So, eventually, how are even rich countries going to be able to afford treatment at seroconversion...if we go back to that???
Yes, I live in three countries outside the states, and my ID is in Switzerland.
Remember lets not hijack this thread, which is about supplements.
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Someone up thread a ways wrote, (I haven't figured out how to quote in those nifty boxes yet:)
Jarrow NAC 600mg tablets
and NAC smells rancid
What is NAC - and what does one take it for?
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Hi Bill,
NAC (N-Acetyl-Cysteine) here is a quick info sheet about it, not very extensive but maybe it can help a bit http://newyorkbuyersclub.com/resources/all-about-supplements/index.html
Scroll down the left hand side until you see NAC and click on it, or any other supplement you want some more basic info on. Once again this is not a deep, comprehensive resource but has anwsered a lot of my basic questions.
Best wishes!
~J
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Wow, thanks, for the info about NAC.
Your ref and Google answered a lot.
Now I'll speak to my docs - they're always complaining about my liver functions and triglycerides and such.
Only my "regular doctor" (primary care physician and a gay man) seems to know or care anything about supplements and natural remedies. My ID docs are all into chemicals!
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I put supplements 5th on my list of things to do. If I don't do the first four religiously, I don't bother with supplements.
My list -
- take my meds
- eat right
- workout
- get plenty of sleep and reduce stress
If I have those things under control, I add some protein shakes, b-vitamins, a complete vitamin, fish oil caps, and get that juicer out. I don't do the supplements with HIV in mind but trying to ward off cancer, heart disease, strokes, and all of the other things that can still get me:)
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We deleted Seth's post.
OMG... Thank you for putting that in here. I was going crazy looking for it. I"m like, where is the post with all the cap locks. I can't find it!!! LOL
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Caught the comment about NAC smelling rancid. If it does, then it is. It will go bad if exposed to too much heat and/or light. It's gone bad on me in the summer if I didn't keep it cool.
Keep it refrigerated for best results. If you buy it and find it stinks really bad, take it back to the store and demand a refund or exchange.
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Thanks for the rancid explanation!! I was wondering about that.
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Madbrain, a person can't demand HAART and get it, the ID has to sign off. I felt crappy at seroconversion, then fine again. After my first labs, the ID told me to go on holiday to Italy. When I came back he was on holiday. Zoot. I saw my generalist who did labs. He conferred with specialists, who said I could be having very long seroconversion, since my CD4s were rising. No HAART recommended. A month later the ID did labs again and said he thought my body is one that doesn't fight HIV very well, if at all, but it was strange my t-cells weren't going done to 0.
You know, maybe everything I was doing with diet and supplements and mindfulness, was helping my t-cells, but as the ID says, they just can't do much against HIV. Who the f** knows.
Anyway, got the HAART. At last labs, with viral loads at close to undetectable, he said my defenses actually did contribute to the success of the HAART, so maybe I fight it a little bit.
I've always used supplements, so it seemed like a good bet to use them again. Pity no government or university can pay to do a lot more research. However HAART gives a lot of bang for the buck. Very big bucks.
Glad you and bf are both well, best wishes.
GOOD ARTICLE!!!!!!!!!!! thank you man... you see.. there is other ways Madbrain..... too bad your on the doctors side bro...
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GOOD ARTICLE!!!!!!!!!!! thank you man... you see.. there is other ways Madbrain..... too bad your on the doctors side bro...
Other ways than what ? I don't see what you are getting at. mecch is taking HAART and experiencing its benefits.
And if you don't think your doctor is on your side, then you should change doctor.