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Author Topic: Supplements aren't backed by science !  (Read 5184 times)

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Offline madbrain

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Supplements aren't backed by science !
« on: April 28, 2008, 10:51:46 PM »
Don't listen to anybody who says otherwise. It couldn't possibly be true.

http://content.nejm.org/cgi/content/abstract/351/1/23
http://www.ajcn.org/cgi/content/abstract/76/5/1082
http://www.ncbi.nlm.nih.gov/pubmed/8853729
http://jia.sagepub.com/cgi/content/abstract/1/2/63
http://www.jaids.org/pt/re/jaids/abstract.00126334-200412150-00021.htm;jsessionid=LWGHRQWXp1ZChB7wqvjSl7LkJsG9gT1vcHJq1Xbpy12HSmNC0yF2!1379360954!181195629!8091!-1
http://www.ncbi.nlm.nih.gov/pubmed/15795466
https://www.who.int/nutrition/topics/Paper_2_Micronutrients_bangkok.pdf
http://www.aidsonline.com/pt/re/aids/abstract.00002030-199908200-00012.htm;jsessionid=LWGMLKVy2y1ZTypPcKNVhhyyqYXyL0TvhgzvFk8sd1zQgpfvsS2h!1379360954!181195629!8091!-1
http://www.aidsonline.com/pt/re/aids/abstract.00002030-199813000-00013.htm;jsessionid=LWGcTzTCT9rS3yd2vSNvVyClNj3B8vC23vKdpvnzdFwLCKcj2zX8!1379360954!181195629!8091!-1
http://www.blackwell-synergy.com/doi/abs/10.1046/j.1365-2362.2001.00781.x
http://www.ncbi.nlm.nih.gov/pubmed/9339849
http://www.ncbi.nlm.nih.gov/pubmed/9215661
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T38-455PYNV-5&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=30340af2979926896ed378c237e3bd50
http://www.aidsonline.com/pt/re/aids/abstract.00002030-199705000-00009.htm;jsessionid=LWFds3yhqGXZLRXHkpSw256nGrcTglYJchmQjGrRtv7GLclDh9ZW!1167962659!181195628!8091!-1
http://www.ncbi.nlm.nih.gov/pubmed/8199417
http://www.jaids.org/pt/re/jaids/abstract.00126334-200608150-00001.htm;jsessionid=LWFcxhyH7hdNJrHpKdwXTyTfwzDGWnyVKS6TnJPsyjc41h8hQ4G2!1379360954!181195629!8091!-1
http://links.jstor.org/sici?sici=1044-3983(199807)9%3A4%3C457%3AVIHDPA%3E2.0.CO%3B2-9
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WCJ-45GWBVR-2V&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=330776a40d9b7d57f4534cf14a9e2a88
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WP9-4GND96G-G&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=a49ee1e95d7119d6c7073648d7dd032b
http://www.springerlink.com/content/gwl86g6q1pu9239m/
http://www.aidsonline.com/pt/re/aids/abstract.00002030-200407230-00009.htm;jsessionid=LWGGJyr7Z4T20DKNnLvvZpF4kHDqF17v8nsmqyY0h7DVT29GqyGm!1167962659!181195628!8091!-1
http://www.ncbi.nlm.nih.gov/pubmed/10956377
http://www.jbc.org/cgi/content/abstract/272/9/5814
http://www.aidsonline.com/pt/re/aids/abstract.00002030-200311210-00008.htm;jsessionid=LWLG38trgQ1ypDgQpyqnKpnP2t1TlgyyHvLg0pBTJ1lZSq76Wlfq!1379360954!181195629!8091!-1
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6TB0-3Y2N020-1&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=03920ebe3a7677daee5ee54450ebf261
http://www.ncbi.nlm.nih.gov/pubmed/7576323
http://www.ncbi.nlm.nih.gov/pubmed/8503918
http://www.ncbi.nlm.nih.gov/pubmed/11684313
http://www.aidsonline.com/pt/re/aids/abstract.00002030-200204120-00020.htm;jsessionid=LWKcGhj2PfLhy5FFH9mvLQQ12hN3wW6jZhZyyvJ2t4zBPLGdhvLh!1167962659!181195628!8091!-1
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6SYR-4M7KB0H-1&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=612e1b8fbfcdebb5d184e1e050cb669f
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WH4-4B0NBYJ-X&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=9f6f3507097df32c5b3960bd92d8f2b8
http://pubs.acs.org/cgi-bin/abstract.cgi/jpcbfk/2006/110/i06/abs/jp0550762.html
http://www.ncbi.nlm.nih.gov/pubmed/1753340
http://www.ncbi.nlm.nih.gov/pubmed/8302491
http://www.ncbi.nlm.nih.gov/pubmed/7890479
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1749-6632.1992.tb17097.x
http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102178323.html
http://www.ncbi.nlm.nih.gov/pubmed/1482376
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T38-3YB9T83-3B&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=d12658dc87a29a7b2a1aeed8fa648e47
http://www.springerlink.com/content/p21177554k2r0228/
http://www.pubmedcentral.nih.gov/articlerender.fcgi?&pubmedid=2112750
http://www.ncbi.nlm.nih.gov/pubmed/8194133
http://www.jimmunol.org/cgi/content/abstract/162/5/2569
http://www.blackwell-synergy.com/doi/abs/10.1046/j.1365-2362.2000.00736.x
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T75-3YS92DX-C&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=2c56dcd47f6a407dca871c5fab8b73b4
http://www.ncbi.nlm.nih.gov/pubmed/7909525
http://www.ncbi.nlm.nih.gov/pubmed/7942779

Offline BT65

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Re: Supplements aren't backed by science !
« Reply #1 on: April 29, 2008, 08:38:39 AM »
No one said a multi-vitamin was a bad idea.  For me, Medicare Part D nor my state's Medicaid will cover supplements.  Why?  Because doctor's don't prescribe them, as they're not considered medicine that will "cure" anything or "stop" anything from happening.  And until medical science starts prescribing them as they do FDA approved medicines, I won't be spending the meager amount I get on social security disability on them (other than a multi-vitamin). 

I also don't think it's wise, for those of us on HIV medications (or any other prescribed medication), to start mixing in supplements without talking to a knowledgeable ID doctor and a well-educated pharmacist.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Matty the Damned

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Re: Supplements aren't backed by science !
« Reply #2 on: April 29, 2008, 09:34:11 AM »
With respect, I think what Madbrain is doing is using a straw-man argument. He's creating the illusion that a number of us have dismissed supplements as having no scientific or clinical value whatsoever and attacking that.

That is not our position. We've argued that there is no substantive or persuasive evidence that nutritional and dietary supplements are a suitable alternative to HAART. We've argued that people should use dietary and nutritional supplements where there is a clear clinical need eg a person has a vitamin or mineral deficiency.

This pile of links (which I suspect Madbrain himself has not read in any detail but has presented in an attempt to bamboozle people) does not prove otherwise.

Regards,

MtD

Offline thunter34

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Re: Supplements aren't backed by science !
« Reply #3 on: April 29, 2008, 09:37:20 AM »
Quote
Conclusion: Vitamin A supplementation, a low-cost intervention, does not appear to be effective in reducing overall mother-to-child transmission of HIV; however, its potential for reducing the incidence of preterm births, and the risk of mother-to-child transmission of HIV in these infants needs further investigation

The above is just a snippet from one randomly selected link amidst the barrage of ones you posted above, madbrain.  In fact, I took the time to click through a great many of them and found (SUPRISE!) that not only are many (or most) of them very outdated, the lion's share of them don't end up supporting anything in the way of supplementation.  They are merely reports of studies on things like HIV's effect on nutrient absorption and such.  And when they are actually about supplementation, they end up with conclusions like this one.

It looks like you just googled "HIV + Vitamins" or whatever and posted every hit that stuck.  Perhaps you thought that an avalanche of links would overwhelm people and they might take one look at it and just assume you had won your argument.

Nice try.
AIDS isn't for sissies.

Offline BT65

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Re: Supplements aren't backed by science !
« Reply #4 on: April 29, 2008, 12:37:42 PM »
I just clicked on a few of the links, and they were all short-term studies, saying that long-term studies were warranted.  But, no follow-ups on the long-term studies (because there were none). 

I agree with Timmy, Madbrain.  It looks like you googled what you were trying to find and randomly posted links here, hoping to start some sort of hysteria about taking supplements. 

When you find an ethical, long-term, tested and retested, long-term,  actual scientific study that proves this or that supplement "fixes" some sort of deficiency, and one that we can all afford, well, maybe then I'll give more creedence to what you're trying to peddle.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Lorenzopier

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Re: Supplements aren't backed by science !
« Reply #5 on: April 29, 2008, 04:46:01 PM »
There is a substantial amount of medical evidence that shows that nutritional deficiencies can start as early as 3 weeks after seroconversion of hiv. Why is there hardly any research efforts to tackle the nutritional deficiencies at these early stages? My stand is that there should be research efforts into arresting this deficiencies at the early stages while implementing HAART when hiv has finally progressed into the actual medical treatment stage.
« Last Edit: April 29, 2008, 04:49:08 PM by Lorenzopier »

Offline anniebc

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Re: Supplements aren't backed by science !
« Reply #6 on: April 29, 2008, 05:29:41 PM »
With respect Madbrain I think you have gone a little over the top with this post, from all the links you have posted it sound like it's obviously a pet hate of yours and something you seem quite passionate about, and I'm not knocking you for that, everyone to there own.....but in all honestly all I have to say on this is kudos to those who have posted so far and have actually taken the time to wade through a few off them..sorry but I'm not one of them.

Hugs
Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline thunter34

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Re: Supplements aren't backed by science !
« Reply #7 on: April 29, 2008, 05:36:25 PM »
There is a substantial amount of medical evidence that shows that nutritional deficiencies can start as early as 3 weeks after seroconversion of hiv. Why is there hardly any research efforts to tackle the nutritional deficiencies at these early stages? My stand is that there should be research efforts into arresting this deficiencies at the early stages while implementing HAART when hiv has finally progressed into the actual medical treatment stage.

Probably because most of these deficiencies are easily remedied by way of a plain old daily multi-vitamin, and because there is only so much money to go around.  Given the options, I guess most agree that the money is best spent on researching ways to either suppress or eradicate the virus...rather than sinking a lot of money into something that can most often be taken care of by a Flintstones chewable.
AIDS isn't for sissies.

Offline madbrain

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Re: Supplements aren't backed by science !
« Reply #8 on: April 29, 2008, 10:01:45 PM »
Matty,

With respect, I think what Madbrain is doing is using a straw-man argument. He's creating the illusion that a number of us have dismissed supplements as having no scientific or clinical value whatsoever and attacking that.

Maybe not yourself, but I think several around here have done that, even in this thread still.

That is not our position. We've argued that there is no substantive or persuasive evidence that nutritional and dietary supplements are a suitable alternative to HAART. We've argued that people should use dietary and nutritional supplements where there is a clear clinical need eg a person has a vitamin or mineral deficiency.

This pile of links (which I suspect Madbrain himself has not read in any detail but has presented in an attempt to bamboozle people) does not prove otherwise.

The purpose of the pile of links was to show that there was some science and benefits behind many supplements, and they should not be simply dismissed.
I do not t suggest supplements as an alternative to HAART. I only view it as a complement to HAART, not as an alternative at all.

I happen not to be on HAART yet, because my doc says it's better to wait given my current lab numbers and health. But the day he tells me I need to go on HAART, I will. I might even ask him to go on it before he tells me, if I see a bad enough downward trend in my labs or health. Fortunately neither has happened yet. I don't know if it's the supplements or some genetic reason. I just ordered a CCR5 genetic test to try to find out.

My doctor did not go out of his way to prescribe supplements to me except a multi-vitamin. But he is sufficiently convinced of the benefits of the supplements I take for HIV to have given me at my request actual prescriptions for more than 2/3 rd of them. These prescriptions allow me to buy those supplements tax-free in my healthcare FSA. For the last 1/3rd, he doesn't think there is benefit, but he also doesn't think they are harmful either.

My bf had bad numbers from the start. He went on HAART very soon after his HIV+ diagnosis. He is taking some supplements too, just not as many as I am. I have seen the side effects of HAART on him from the day he started Atripla. I know they are not typical. He already changed cocktail once the first year due to side effects. Still, it makes me want to do anything in my power to delay need for starting HAART.

Offline madbrain

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Re: Supplements aren't backed by science !
« Reply #9 on: April 29, 2008, 10:11:37 PM »
No one said a multi-vitamin was a bad idea.  For me, Medicare Part D nor my state's Medicaid will cover supplements.  Why?  Because doctor's don't prescribe them, as they're not considered medicine that will "cure" anything or "stop" anything from happening.  And until medical science starts prescribing them as they do FDA approved medicines, I won't be spending the meager amount I get on social security disability on them (other than a multi-vitamin). 

I also don't think it's wise, for those of us on HIV medications (or any other prescribed medication), to start mixing in supplements without talking to a knowledgeable ID doctor and a well-educated pharmacist.

The fact that Medicare or Medicaid don't cover them doesn't mean they don't have some benefit.

Doctors can and do prescribe supplements. I have been prescribed many supplements by several doctors for different conditions. For some conditions, it's a real no-brainer. For example, I have a vitamin D deficiency, so I get a prescription for vitamin D. For HIV, it's less common other than a multi-vitamin. But my HIV doctor did it for me at my request, for a majority of the supplements I take for HIV, which he thought were adequately supported scientifically. He wrote a letter saying that the purpose of my taking these supplements was for the treatment of HIV. This letter allowed me to get reimbursed for these supplements in my healthcare FSA account, which means I get to buy them tax-free instead of after-tax. Normally vitamins and supplements are excluded from the FSA, unless they are for the treatment of a specific medical condition.

Offline madbrain

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Re: Supplements aren't backed by science !
« Reply #10 on: April 29, 2008, 10:18:43 PM »
There is a substantial amount of medical evidence that shows that nutritional deficiencies can start as early as 3 weeks after seroconversion of hiv. Why is there hardly any research efforts to tackle the nutritional deficiencies at these early stages? My stand is that there should be research efforts into arresting this deficiencies at the early stages while implementing HAART when hiv has finally progressed into the actual medical treatment stage.

Well said. There could stand to be more research on the issue and which ones have the most benefit.

If taking relatively inexpensive supplements (in comparison to HAART) early on significantly delays the time to start HAART, then it should be a win for everybody - us patients who don't start HAART as early as before, and possibly suffer side effects earlier than we need to, and the insurance companies and governments who don't have to pay as much out for HAART.   That should free up a lot of money for research into a cure.

Offline BT65

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Re: Supplements aren't backed by science !
« Reply #11 on: April 30, 2008, 11:12:19 PM »
My doctor will not prescribe vitamins/supplements.  It wouldn't really matter if he did; my Medicare Part D plan wouldn't cover them anyway.  So, it's not "relatively inexpensive" for me.  If you care to send me donations, I will gladly accept them.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline madbrain

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Re: Supplements aren't backed by science !
« Reply #12 on: May 01, 2008, 03:17:59 AM »
Bettytacy,

My doctor will not prescribe vitamins/supplements.  It wouldn't really matter if he did; my Medicare Part D plan wouldn't cover them anyway.  So, it's not "relatively inexpensive" for me.  If you care to send me donations, I will gladly accept them.

I was talking about the selling price of the supplements and HAART before insurance. The supplements cost far less from that point of view.
I am sorry that your doc won't prescribe any supplements and that Medicare doesn't cover them. I think this reflects more on the sorry state of our healthcare system than how much science is behind the supplements and how effective they may be.

Offline risred1

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Re: Supplements aren't backed by science !
« Reply #13 on: May 14, 2008, 03:58:51 PM »
I know I'm wading back into dangerous waters but here goes.

As even posted as news on aidsmeds.com, The Supplement Acetyl L Carintine does have a study that show some effectiveness in treating PN. And can be prescribed by a doctor if your on ADAP in NY State.

What does this mean, or how can on interpret this information?

Let's start with the size of a study. If a study is small, does that mean that what is uncovered is without merit?

In my opinion, you work with what you got. if you have a small study, you look at the results regardless. What we all want is replication and confirmation of what is being stated in the study. Is it repeatable, is the science solid, what do peers think of the study. Does it merit further research. And is someone going to do the work on a larger scale. The issue we have to accept is that funding for some of these studies is limited and those with the funds may not be inclined to fund such studies. While there are those who encourage further research, grants or backers for supplement research are often limited from doing the larger studies to show/confirm efficacy of a supplement.

Supplements used to attempt to manage various aspects or side effects of HIV infection is also something to consider. While many focus on "deficiencies" and how a multi vitamin is all that is required if one has a say Vitamin D deficiency, there are other reasons to look at supplements to address side effects, such as metabolic effects - i.e. Fatigue, and Digestive Effects - i.e. Diarrhea, and Toxicity Effects - PN, Liver issues, Mitochondrial, and Immunological effects - Erosion of CD4 counts.

I believe that it is perfectably reasonable to take an over the counter supplement that is considered generally regarded as safe to offset these side effects of HIV infection.

So here is a good example I like to site and is a personal pet peeve of mine regarding the treatment of diarrhea. Imodium is commonly used to deal with diarrhea caused by HIV or meds. Imodium used to be a prescribed medication and is now over the counter and relatively inexpensive from a generic stand point. I know I can get 200 at Costco for less than 10 bucks. And it probably can still be prescribed as a treatment. But one can deal with diarrhea with Glutamine, which is an amino acid, Fiber and Bacteria.

I believe I get more out of this approach than taking Imodium. My digestive tract is performing well and comfortably, where I was taking Imodium every day to deal with HIV caused diarrhea.

So what do I need from a Scientific standpoint to explain the interconnection between the use of Glutamine, Fiber and Acididophilus? Or is it ok to mention that there is an alternative approach to diarrhea that involves these supplements.

Using Ginger for Nausea for example. Should Ginger be considered a supplement? What if it comes in a pill? Are we going to ignore Generations of medicinal herbal history because we don't have a study showing that ginger may alleviate Nausea? I have seen several comments about using ginger and have used it myself. Will it stop everyones bout with Nausea? Does everybody experience the same results from ARV meds? We all know the answer to that one.

And my last point is of course the concern that anecdotal evidence is also frowned upon to the point that it is encouraged not to talk about it. I know this is tricky stuff. And that we need to be careful about making over the top claims and the like. But it is part of the collective informal study that life itself provides. Just like Betty who says they have a box of supplements under the bed that didn't do a thing is a anecdotal reflection. Because it doesn't work for one person, doesn't mean it won't have an effect for someone else, and I try to be open and direct and honest about what i take and what the blood test shows. Even if 3 out of 4 don't gain anything, what about the 1 out of 4 that experience something positive? Is that to be discounted?

I'm hopefully trying to do the "right" thing. I am a reasonable person. I don't say - don't take meds! I know I will have to go on meds as I don't believe that even my complex supplement regimen will protect me for that much longer. I just took another blood test and we will see on Monday if I can delay any longer. But as my doctor has repeatedly told me, keep up what I'm doing and he has reviewed my regimen.

I know we can't "solve" the disagreements over the use of supplements. And I'm not trying to "solve" the issue. The exchange of information in general seems to be a great pro and con discussion. But in my opinion we tend to think of our bodies as being POZ but normal. I think that being POZ has a number of effects on how our bodies work and obviously meds also have their effects. How to look at those effects and looking at supplements is ultimately what I'm about and what I'm encouraging folks to consider.

If we need to start talking in terms of biochemical process at a detailed level which will make my head explode, we might just have to roll some of that out just to get some of this on the table. But ultimately, what would we gain?


 


« Last Edit: May 14, 2008, 04:00:33 PM by risred1 »
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 Dachshund

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Re: Supplements aren't backed by science !
« Reply #14 on: May 14, 2008, 04:28:52 PM »
Your anecdotes are no more true or verifiable than Betty's and that's what needs to be pointed out. Know one knows who we are on the internet, or our motives, and when you're dealing with HIV, diagnosing and treating side effects is a very serious business.

So what do I need from a Scientific standpoint to explain the interconnection between the use of Glutamine, Fiber and Acididophilus? Or is it ok to mention that there is an alternative approach to diarrhea that involves these supplements.

You don't, as long as you admit that there is no peer reviewed proof behind your claim and this is just your own personal story that might not work for everyone. Oh, and you always need to run it by a doctor because we don't DIAGNOSE or treat over the internet. Do that and I'm cool, don't and I'll point it out for you.

I wish we spent as much time on prevention as we did supplements. The other day I discovered a site where people actually posted wanting to become infected, with others posting eager to grant their wish. That was an eye opener.

 


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