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Author Topic: The Great Pro and Anti Supplement Shoot Out!  (Read 11147 times)

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Offline risred1

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  • Posts: 419
  • My Source for Supps - www.newyorkbuyersclub.org
The Great Pro and Anti Supplement Shoot Out!
« on: April 11, 2008, 12:47:11 AM »
Put yourself in my shoes for just a moment.

I've been poz for about 4 years now, In that time, I saw my CD4's steadily dropping getting closer to the 350 line I set for myself for going on meds.

Since I've been supplementing, I've reversed that trend and my CD4's actually have improved 100, form my low of 380 to my current 480ish, and my percentage has improved as well.

True that in anecdotal evidence. My personal experience.

Now I see plenty of well reasoned arguments against supplementing, often ending up with the statement your pissing your money away.

But when you see results like mine, how would you think I should react to those statements. Should I throw my supps out and see what happens? Even my doc says, whatever your doing, keep it up.

Well what I propose is that we put all our thoughts into a single forum subject so that we can just point to it in the future as the definitive discussion between the PRO and ANTI supplement factions that comment regularly on this topic.

Bottom line for me, I feel I'm getting results from my own program. When even your specialist is advising a continuation, its only makes sense to continue. My specialist know all the supplements I take, and he had no advice to give accept that the supplements were GRAS. (generally regarded as safe.)

And by luck, I ran into a fellow who thanked me for informing him about KPAX. He told me point blank that he feel so much better and his CD4 are improving. His doctor is asking what he is doing.

These are truly anecdotal situations. We can only share what we are taking and report if there is any change in CD4 and other measurements.

But I have to repeat this, in light of commentary that supps are a waste of money, if you were me, would you stop taking the supplements given the upward tick in my blood work since I've been taking my supplement program?
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 risred1

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #1 on: April 11, 2008, 01:51:18 PM »
The reason I take supplements is because I simply believe they are helping me keep my CD4 Count up, which is delaying the point I will need meds.

Essentially I have constituted my formula on K-PAX, the controversial and expensive Supplement package that is designed for HIV Positive Folks.

Alot has been said in this forum about Kaiser from calling him a Shill for his product, to providing excellent care from his cliniques. My specialist even calls what Kaiser does as Boutique care.

John Kaiser wrote a book awhile back called Healing HIV. This book was written just as HARRT and various more toxic medications were emerging. Kaisers point of view was that there is a point you need to use medications, but he also believe that you could delay your need for meds through the use of Nutrients and by adopting an overall strategy for managing your HIV illness, from stress reduction, exercise, and regular screening for intestinal parasites. Of course I'm just summarizing.

My belief that Kaiser has something valid to say is somewhat based upon my own experience with Blasto Hominus, an intestinal parasite, that cause my VL to spike and my CD4 to drop. After screening and successful treatment, my VL did drop back down, and my CD4 stabilized.

I was debating weather to order KPAX but I'm put off by the costs. Very High. But I was able to locate a group of people in New York, a buyers club, that basically allow you to make your own K-PAX at a significantly discounted cost.

I took this program for 2 years, which kept my CD4 above the 350 limit my doctor and i set for meds. He kept advising me to be prepared as the next test may necessitate me going on meds. I was testing every 3 months. Based upon my initial counts and early trends, and I was POZ for a year before diagnosis, he believed that I was already in a progressing stage vs. having an very Low VL and high CD4 for years before they start crashing.

So I've been hovering for 2 years, which was good. I have since added ECGC / Green Tea Extract to my regimine. After 6 months and the last test I had, my CD4 improved 20% as my percentage did. My VL also jumped up. My doc was surprised.

My doctor looked at my supplement list and crowned me "king of supplements" as as far as he knows, noone else is taking my formula. He did review it, and aknowledged that as long as my dosage is where it is at, the list is considered Generally Regarded as Safe. He also advised that what ever I'm doing, keep it up.

I do recognize that this is my personal experience, but i did not make these decisions in a vacuum. I relied on Kaisers opinions and research and the newyorkbuyersclub.org supplement information sheets, and am always considering any new information on the effectiveness of supplements.

It is clear to me that more information and studies are needed. It is also clear to me that there really isn't much interest in studying supplements.

It is easy to say, there is no proof of effectiveness. I take this position seriously. No proof is just that. Small studies should always be regarded with suspicion. Who and how the study is done is important.

Often we have to draw conclusions and look for extrapolations to see if something my provide some benefit. I would also state that many supplements are marginal at best in providing help in the grand scheme of effectiveness. I believe that while some may benefit from a supplement, there is just a good chance that it won't work for the next person. I don't believe that supplements can provide the general across the board effectiveness that HARRT or HIV Med provides. Low efficacy, does not mean no effectiveness, it simply just means that only so many folks will show some benefit.

I cannot tell you what in my formula is helping me specifically. The formulation is a shotgun approach. That can be distressing in itself as what is doing what for whom. But really, I didn't have the time to try one thing and note the results at the next test.

But the important thing for me is that I have defied my doctors expectations for at least a while, and my CD4 has improved during the time I have supplemented, which is generally not the expected pattern of disease progression.

I also believe that my formula can fail at any time as supplements cannot ultimately prevent you immune  system to start loosing the battle with HIV. That I will have to take meds at some point. That my strategy is just buying time.

If I were not HIV positive, I would regard supplementation other than a multivitamin or vitamin D supplement in the winter as not necessary. I agree that food is the best source for nutrition. The nutrients I seek, are not all that easy to obtain in the quantity I seek from the food I actually eat. But here is an example of where I use food instead of a supplement. I wanted to increase my DHA intake. DHA is the stuff that in Fish Oil. Omega 3, essentially. I was in fact taking a supplement. But I discovered that Walnuts and Flaxseed are very high in DHA. So I now eat oatmeal daily with a sufficient amount of walnuts to get the DHA I'm seeking. (about half a cup).

For me, I'm going to continue to be Pro Supplement because of my personal results. But I want to make sure that supplements are not a substitute for proper medical care and supervision. One should be working with a Doctor and getting regular blood work done to monitor progress. And, unfortunately, I know that there are going to be folks out there where the supplements will not delay onset of AIDS. I am not promoting supplements as an alternative to HARRT. I am promoting supplements as a possible source of nutrients your body may be depleting or needing to reduce inflammatory responses from the infection.
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 J.R.E.

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  • Posts: 6,960
  • Joined Dec-2003 Living positive, since 1985.
Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #4 on: April 12, 2008, 07:41:19 AM »


Well, lets see. I've been taking supplements most of my life. I am 56 years of age now. I've been taking a variety of supplements since I was about 20.

I was diagnosed positive in 1985, I still took a variety of supplements during that time. But it didn't stop me from getting an aids diagnoses in 2003. which is when I started on meds. Did all this help to prolong having to start on meds? I doubt it.  But I always did try to take care of myself as best I could thoughout most of those years. I made my choices, I made errors. I still take supplements.


Ray

Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline Lorenzopier

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  • Posts: 90
Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #5 on: April 13, 2008, 03:40:05 PM »
 This abstract is from the American  Journal of Clinical Nutrition

In HIV-infected persons, low serum concentrations of vitamins and minerals, termed micronutrients, are associated with an increased risk of HIV disease progression and mortality. Micronutrient supplements can delay HIV disease progression and reduce mortality in HIV-positive persons not receiving highly active antiretroviral therapy (HAART). With the transition to more universal access to HAART, a better understanding of micronutrient deficiencies and the role of micronutrient supplements in HIV-positive persons receiving HAART has become a priority. The provision of simple, inexpensive micronutrient supplements as an adjunct to HAART may have several cellular and clinical benefits, such as a reduction in mitochondrial toxicity and oxidative stress and an improvement in immune reconstitution. We reviewed observational and trial evidence on micronutrients in HIV-positive persons receiving HAART to summarize the current literature and suggest future research priorities. A small number of observational studies have suggested that some, but not all, micronutrients may become replete after HAART initiation, and few intervention studies have found that certain micronutrients may be a beneficial adjunct to HAART. However, most of these studies had some major limitations, including a small sample size, a short duration of follow-up, a lack of adjustment for inflammatory markers, and an inadequate assessment of HIV-related outcomes. Therefore, few data are available to determine whether HAART ameliorates micronutrient deficiencies or to recommend or refute the benefit of providing micronutrient supplements to HIV-positive persons receiving HAART. Because micronutrient supplementation may cause harm, randomized placebo-controlled trials are needed. Future research should determine whether HAART initiation restores micronutrient concentrations, independent of inflammatory markers, and whether micronutrient supplements affect HIV-related outcomes in HIV-positive persons receiving HAART
« Last Edit: April 13, 2008, 03:45:31 PM by Lorenzopier »

Offline Dachshund

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #6 on: April 13, 2008, 05:30:15 PM »
However, most of these studies had some major limitations, including a small sample size, a short duration of follow-up, a lack of adjustment for inflammatory markers, and an inadequate assessment of HIV-related outcomes. Therefore, few data are available to determine whether HAART ameliorates micronutrient deficiencies or to recommend or refute the benefit of providing micronutrient supplements to HIV-positive persons receiving HAART. Because micronutrient supplementation may cause harm, randomized placebo-controlled trials are needed. Future research should determine whether HAART initiation restores micronutrient concentrations, independent of inflammatory markers, and whether micronutrient supplements affect HIV-related outcomes in HIV-positive persons receiving HAART

Do you mind supplying the link?

Offline Lorenzopier

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #7 on: April 13, 2008, 05:53:09 PM »
« Last Edit: April 13, 2008, 08:24:32 PM by Lorenzopier »

Offline BT65

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #8 on: April 13, 2008, 11:21:45 PM »
Well, in the first link  I read, the study was full of limitations, and suggested much research needs to be done to reach a definitive conclusion.  I think people should refrain from pushing supplements on others until more good, scientific research is done that strongly supports supplement intake.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline J.R.E.

  • Member
  • Posts: 6,960
  • Joined Dec-2003 Living positive, since 1985.
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline risred1

  • Member
  • Posts: 419
  • My Source for Supps - www.newyorkbuyersclub.org
Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #10 on: April 15, 2008, 12:52:15 PM »
I personally struggle with the concept that supplements should not be considered because of "lack" of scientific proof.

The problem is, they are frequently not considered for study, and i can't wait for the scientific community to get around to it.

Meanwhile, folks are asking what to do with supplements. Which ones to take. What can one expect and so forth.

My personal beliefs are based upon my own experimentation. So I have acquired some knowledge in the area. I feel awkward in not sharing what I have learned and what resources I utilize to develop these points of view.

For example. It is well known that Ginger is a strong anti Nausea agent. Do you need proof that it is if something is considered G.R.A.S. ? (Generally Regarded as Safe?) I suggest that if someone is complaining about nausea, its just fine to talk about using ginger supplementation to see if it works for that individual.

When at first we hear about Diabetics and their trials with PN, and then we hear that they are using Acetyl L Carnintine to treat and in some cases reverse PN. And once again its is an over the counter supplement that is GRAS, then why wouldn't we mention that as something that can be tried?

Trying to understand the impacts of HIV infection, the metabolic, inflammatory, digestive issues that HIV and Medications often impart, and then being able to talk about GRAS supplements as possible avenues of treatment for managing those aspects, with perhaps extrapolated, studies or anecdotal evidence as sources, I believe in a forum is fine to talk about, and as well to debate with other points of view that can illustrate the shortcomings of the information, being provided.

HIV, being a chronic condition and infection, which ultimately requires the application of HART medications to treat, has pushed me to look at alternative treatments to try to buy time, before I have to go on Hart. I will repeat that my specialist is aware of my entire list of supplements, and while not advocating them, believes that they are not doing any harm, and are GRAS. If my University of Pennsylvania Hospital Specialist is telling me to keep up what ever I'm doing, then I'm taking that feedback and am feeling ok with sharing this information.

I hear very well those who do not thing supplements are wise. And I consider the information also provided as well in those discussions. The discussion regarding selenium is a great point. What was considered an essential supplement is a bit tarnished in the few studies that have been done. So one is wise to consider any information, reinforcing or countering use in developing ones own supplementation program, if one desires to create one.

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 Merlin

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  • As My WILL, So MOTE It Be !
Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #11 on: April 15, 2008, 08:05:10 PM »
I never see it as a case of allopathic vs natural, medicine vs supplements...etc, whichever way one swings it. All ingestions, be they food, drugs, supplements (feel free to use your imagination here), do either harm or good or both, to one's body. Many work for some and some for many. So whatever works for you, that's your reality.

Not everything goes thru the standard protocol of western clinical studies, thank goodness. If that were the case, then 3/4 of what worked before of what we used for some forms of ailments, will be off the shelves. Science cannot prove everything. There are some things we need to use basic common sense. Example: How does one "clinically prove" the effects of placebos widely used in clinical trials?

Gonna have my cuppa green tea with ginseng and peppermint- dun need no science to enjoy their perk me up goodness and pleasure. ;)
« Last Edit: April 15, 2008, 08:08:48 PM by Merlin »
I'll leave Hatred to those not strong enough to Love.

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Believe & The Power Of The Mind Transforms.
Make It Happen...

                            +++

I blame them for nothing.
I forgive them for everything.

---->> Mary J. Blige on dysfuctional parents

Offline BT65

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #12 on: April 15, 2008, 10:14:03 PM »
When at first we hear about Diabetics and their trials with PN, and then we hear that they are using Acetyl L Carnintine to treat and in some cases reverse PN. And once again its is an over the counter supplement that is GRAS, then why wouldn't we mention that as something that can be tried?

I'm diabetic and take Neurontin (Gabapentin) for neuropathy.  I don't use things unless they have tried-and-true scientific evidence to back them up.  I used to have a whole shoebox full of supplements and they did not a thing for me.
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: The Great Pro and Anti Supplement Shoot Out!
« Reply #13 on: April 15, 2008, 10:16:07 PM »
I used to have a whole shoebox full of supplements and they did not a thing for me.

Yup.

So Ris, which anecdotal evidence am I to believe? Yours or Bettys?

MtD

Offline shadowfluid

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  • Mike
Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #14 on: April 16, 2008, 02:23:33 PM »
Quote
I also believe that my formula can fail at any time as supplements cannot ultimately prevent you immune  system to start loosing the battle with HIV. That I will have to take meds at some point. That my strategy is just buying time.

You can't predict your immune system health nor buy time with vitamins.   Seriously. My numbers were similar to yours and all of a sudden my VL went from 32,000 to 92,000 in a month and CD4 went 472 to 320.  I'm 27....and insanely healthy...and was popping vitamins.
« Last Edit: April 16, 2008, 02:25:13 PM by shadowfluid »
Jan 08       321/23%  VL 92,000 (very mild shingles)
Feb 1 08    Start Truvada+Viramune
March 08    470/33%  VL 320
mid-May     Start Reyataz/Norvir/Truvada
June 08      571/ 40%     VL   80
August 08   585/ 33%     VL >50
Nov  Lab error!!!!!!!!wah.
Jan 09        535      Undetectable
March 11     756

Offline risred1

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #15 on: April 16, 2008, 09:25:41 PM »
I am trying to be totally honest in these discussions. And I'm trying to be honest with myself.

I am trying to provide a conduit of information regarding supplementation that hopefully goes beyond simply my personal experience. I didn't randomly start taking supplements, I relied on the sources I stated in the beginning of the forum.

So Based upon the last few comments, these are my responses.

1) Having a shoebox of vitamins that did nothing, I can understand that. And I have no problem with someone saying that supplements didn't do a thing for you. Of course you don't mention what supplements, etc. Personally, vitamins are just vitamins. I am of a mindset that when your not deficient in vitamins, add some only server to top off the tank so to speak. Frequently, comments stating that you just piss out these nutrients, I don't have a problem with. Over supplementation of your "standard" vitamins is of limited value in my book. I do take a vitamin designed for people with HIV, that is a full spectrum multivitamin that contains trace minerals in chelated form and 200 mcg of selenium. My supplementation plan includes those elements of KPAX tha Kaiser sites as useful, Alpha Lipoic Acid, Acetyl L Carnintine, NAC and Glutamine. On the KPAX formulation of with I added a sulfur supplement MSM. My CD4 Count became stable. From test to test, my CD4's count were dropping gradually, including the percentage. This is my shoebox of stuff, and I below are the links to the information I used to establish this a part of my regimen.

http://www.newyorkbuyersclub.org/resources/all-about-supplements/index.html

http://www.integrativehealthconsulting.com/research/broadspecbackground.html

Are the links the be all end all of information. Of course not. Are the sources controversial, well, some are and some are very specific studies for use of these nutrients. It takes quite a while to to sort through all the European studies for Alpha Lipoic Acid and the like. But the most important aspect of course is are these substances GRAS.

2) The next study results talk about using Acetyl L Carnitine for PN, news reported by Aidsmeds.com
Betty, I know your mindset is that you need something substantial to consider something. Having a high bar is your prerogative. But sometimes there is information you might at least consider interesting. Things like Alpha Lipoic Acid and Acetyl L Carntine have been used by diabetics to address PN issues. I see no reason why we wouldn't take a look at studies for things outside of the world of HIV, when the resulting conditions are similar. And of course the below study was an HIV study.
 
http://www.aidsmeds.com/articles/hiv_neuropathy_carnitine_1667_13136.shtml

3) As to the statement that you can't predict your immune system health nor buy time with vitamins.

Well, when your numbers are in gradual decline, you can in fact predict where and when you will have to go to HART. My specialist would review the progression of my numbers and using his experience and expertise, make those predictions. Over the last 2 years, I have defied expectations. Of course, I not saying I will not have to go on meds nor am I claiming that this trend reversal may just collapse. There is alot still not understodd about HIV disease progression. While my CD4 took a dramtic leap up, my VL also bumped up in the 40's. Something I'm obviously concerned with. I wouldn't be surprised at all if my next test shows and high VL where I might just have to start on meds. But the increase of CD4 is unusual in my specialists practice. A 20% increase from my prior numbers in the low 400's is unexpected.

----
The major change to my supplementation has been the inclusion of Green Tea Supplement, specifically looking for a high does of ECGC. I take a supplement that states the amount is about 20 cups a day. (it is decaffinated.) After I started the Green Tea, that's when I saw the bump up of my CD4 and the bump up of my VL.

So why would I take this supplement? Why is anyone taking it. We hear things about it. There are studies in cancer patients. There are invitro studies. there a claimed properties about ECGC acting somewhat like a Fusion Inhibitor. Am I playing around with it. Absolutely!

I don't know if someone should or shouldn't be doing something. Efficacy of nutrients is variable. HART is the only proven thing to reduce VL to a high degree of efficacy.

But, in my opinion, is room for thinking about the possible effectives of supplements that may be of some benefits, as they are to diabetics or increasingly, to folks with HIV.

The point of the shootout is to debunk, demystify, understand all points of views of supplementation. I can see perfectly well that the links I have supplied may just simply be insufficient, inadequate, maybe even wrong.

Guys like me in attitude and disposition will reach for the supplement regardless. At least for those who want to consider supplementation, there are guides out there that might prove to be of use. And those who have issues, and problems with supplements or who question their efficacy, have every right and reason to say their piece as to why its a waste of time.

By putting this down in this spot, at least folks can consider the discussion and find what they need for either position they may want to ultimately take. That would be fine by me.

----

BTW - thebody.com just added a nutritionist/specialist to their panel of experts.

http://www.thebody.com/Forums/AIDS/Nutrition/index.html







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 BT65

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #16 on: April 16, 2008, 09:53:21 PM »
Now why would I want to shell out big bucks for Alpha Lipoic Acid and Acetyl L, when I don't know how they would work vs. taking an FDA approved med that I pay much less for that works just fine?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Dachshund

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #17 on: April 16, 2008, 10:06:23 PM »


BTW - thebody.com just added a nutritionist/specialist to their panel of experts.


At least the body's "expert" can sum it all up in fifty words or less.

nutritional supplements
Apr 3, 2008

should I take nutritional supplements? im on a fixed-income (SSI) so i really only can afford the essentials. but I'm wondering if anything can help me.

 
 
 
  Response from Mr. Vergel

Some Medicaids, ADAPs and some Medicare part D programs cover certain supplements. In NY, you can get the KPAX through those programs. If you cannot, I would take a multivitamin with every meal that contains a daily dose of 200 micrograms of selenium plus all vitamin B's. You can find some cheap ones in most grocery stores. We trust companies like Super Nutrition and Jarrow for quality control. I would concentrate on eating fruits of all colors (wide availability of antioxidants) and green leafy vegetables (they contain more vitamins than lighter green vegetables)
 

 

Offline risred1

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #18 on: April 17, 2008, 10:34:40 AM »
Betty, I wouldn't presume to tell you why you should switch.

But I would tell you what I would be thinking about.

Acetyl L Carnitine has shown regenerative capability of the nerve sheath.

Many PN treatments in the past have focused on Pain Reduction and an anti inflamatory action as the treatment. I would want to know how the drugs actually work and if there is restorative capabilities of the drug.

Costs aside, and while I don't think Acetyl L Carnitine and Alpha Lipoic Acide are terribly expensive esspecially compared to co-pays that I am responsible for, I might have reached for ALA and ALC first to see if it would work. Since I'm taking these now, I'm betting on a preemptive effect and I am taking these for other issues I am dealing with.

By no means am I telling anyone to stop taking any prescribed medication. Your doing well, the costs are right, I substantially agree with you that for you, switching isn't necessary. However, you have options if the treatment were to stop working, which is good to have.

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: The Great Pro and Anti Supplement Shoot Out!
« Reply #19 on: April 17, 2008, 11:00:36 AM »
Betty, I wouldn't presume to tell you why you should switch.

But I would tell you what I would be thinking about.

Acetyl L Carnitine has shown regenerative capability of the nerve sheath.

Many PN treatments in the past have focused on Pain Reduction and an anti inflamatory action as the treatment. I would want to know how the drugs actually work and if there is restorative capabilities of the drug.

Costs aside, and while I don't think Acetyl L Carnitine and Alpha Lipoic Acide are terribly expensive esspecially compared to co-pays that I am responsible for, I might have reached for ALA and ALC first to see if it would work. Since I'm taking these now, I'm betting on a preemptive effect and I am taking these for other issues I am dealing with.

By no means am I telling anyone to stop taking any prescribed medication. Your doing well, the costs are right, I substantially agree with you that for you, switching isn't necessary. However, you have options if the treatment were to stop working, which is good to have.



Risred you continue to come very close to crossing the line into diagnosing and recommending treatment for Betty. You may not presume to tell Betty why she should switch, but yet you tell her what she "should" switch to. Again, citing links that you yourself admit are controversial. We know your stand on supplements, but in all honesty I think you should confine your opinion to your own meager anecdotal evidence and quit suggesting treatment for others no matter how sincere you may be.

Even the expert you mentioned at the body doesn't do that. I can only guess you've got his expert opinion on all of this and will provide that link as well.

Offline Funkengruven

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #20 on: April 17, 2008, 01:24:36 PM »
I read a couple of those posts from The Body.  The doctor repeatedly says that a variety of fresh fruits and veggies is best, and when it comes to supplements ... you takes your chances in what they will or will not do for your body.  I'll just stick with a salad before popping anything more "exotic" than a basic multivitamin.

Offline madbrain

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #21 on: April 18, 2008, 12:04:45 AM »
I'm diabetic and take Neurontin (Gabapentin) for neuropathy.  I don't use things unless they have tried-and-true scientific evidence to back them up.  I used to have a whole shoebox full of supplements and they did not a thing for me.

Funny you would mention that drug. I was prescribed that drug for sleep. It did not do a thing for me. Melatonin, on the other hand, seems to work fairly well. But I had to find it on my own.

Offline Dachshund

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #22 on: April 18, 2008, 08:10:12 AM »
Funny you would mention that drug. I was prescribed that drug for sleep. It did not do a thing for me. Melatonin, on the other hand, seems to work fairly well. But I had to find it on my own.


When I was having problems sleeping my infectious disease doctor made me try Melatonin first before he would prescribe me anything. I used it for three months between regular doctor visits with absolutely no effect.

Offline J.R.E.

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #23 on: April 18, 2008, 07:00:27 PM »
Funny you would mention that drug. I was prescribed that drug for sleep. It did not do a thing for me. Melatonin, on the other hand, seems to work fairly well. But I had to find it on my own.


I also used melatonin, back in 1997, for about a year ( as needed). I Also have to say, that I was into hiv infection 12 years at that time, and not on meds.

I used it primarily, because I went onto the 11:00PM to 7:00Am work shift, and decided to try it, to see how it would help me sleep in the daytime. It worked very well, and fast ! It helped me make the transition into the graveyard shift.

I was prescribed nabumetone,(relefen) back in the early part of 2004, when my neuropathy was at it's worst. It did absolutely nothing for me.

My HIV doctor suggested Acetyl-l Carnitine, along with additional B- vitamins, which I still take today, along with ALA. These two are combined in one capsule. I also have been fortunate enough, not to have to take anything additional for the PN. There are some days that are worse than others, my feet still have that cold feeling, that pins and needles feeling, but in most cases, I deal with it pretty well. On the days that are the worse, two aspirin, is all that I need. All I can say is, that the neuropathy is no where as bad as it was back in 2004, when I could barely walk or drive a car, for about a month or so.




Take care-----Ray
« Last Edit: April 18, 2008, 07:05:18 PM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline Lorenzopier

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #24 on: April 19, 2008, 04:06:30 AM »
 :)
« Last Edit: April 19, 2008, 04:10:39 AM by Lorenzopier »

Offline Dachshund

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #25 on: April 19, 2008, 09:26:23 AM »
CDC: Mounting illness reports linked to supplement By MIKE STOBBE, AP Medical Writer
Fri Apr 18, 6:19 PM ET

ATLANTA - Health officials are investigating more than 180 reports of illness in people who took dietary supplements containing toxic levels of the mineral selenium.
 
Last month, federal officials warned consumers about harmful doses of selenium — a mineral considered healthful in small amounts — in plastic bottles of liquid Total Body Formula and Total Body Mega Formula.

The manufacturer recalled the product March 27, but reports of 184 illnesses indicate many people are still taking it, health officials said.

The U.S. Food and Drug Administration found up to 200 times the label level of selenium in the products. The agency also found 17 times the label level of chromium but has not yet concluded if those levels are toxic.

Toxic levels of the minerals were in about 1,200 bottles distributed in 16 states and over the Internet, said Dr. James Lando, who is leading the team working on the investigation at the Centers for Disease Control and Prevention.

Health officials are looking into an escalating number of illnesses in 10 states — Georgia, Florida, Tennessee, Kentucky, Texas, Louisiana, Michigan, Pennsylvania, Virginia and North Carolina.

No deaths have been reported. One person has been hospitalized.

Reported symptoms include hair loss, discolored and painful fingernails, muscle cramps, joint pain, diarrhea and fatigue. Victims have grown ill five to 10 days after beginning to take affected products. Death is possible but unlikely, health officials said.

The products are distributed by Total Body Essential Nutrition Inc. of Woodstock, Ga. The company did not return a message Friday from The Associated Press.

___

Offline thunter34

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #26 on: April 19, 2008, 09:36:40 AM »
Yep.  All over the news down here recently.  Woodstock...not far at all from me.  This hits close to home.  Or rather it would - if I had the funds to make any of this discussion relevent to me in the first place.  This is decided for me already.  Meds = funded.  Supps = not. 
AIDS isn't for sissies.

Offline J.R.E.

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #27 on: April 19, 2008, 03:41:26 PM »
CDC:
The products are distributed by Total Body Essential Nutrition Inc. of Woodstock, Ga. The company did not return a message Friday from The Associated Press.

___



Not my brand of supplements. Got to watch these things though... Thanks for the article.

Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline Lorenzopier

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #28 on: April 20, 2008, 01:10:00 AM »
Korean Red Ginseng Slows Depletion of CD4 T Cells in Human Immunodeficiency Virus Type 1-Infected Patients

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1074393

Offline Dachshund

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #29 on: April 20, 2008, 08:07:52 AM »

Offline BT65

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #30 on: April 20, 2008, 08:54:49 AM »
CDC: Mounting illness reports linked to supplement By MIKE STOBBE, AP Medical Writer
Fri Apr 18, 6:19 PM ET

ATLANTA - Health officials are investigating more than 180 reports of illness in people who took dietary supplements containing toxic levels of the mineral selenium.
 
Last month, federal officials warned consumers about harmful doses of selenium — a mineral considered healthful in small amounts — in plastic bottles of liquid Total Body Formula and Total Body Mega Formula.

The manufacturer recalled the product March 27, but reports of 184 illnesses indicate many people are still taking it, health officials said.

The U.S. Food and Drug Administration found up to 200 times the label level of selenium in the products. The agency also found 17 times the label level of chromium but has not yet concluded if those levels are toxic.

Toxic levels of the minerals were in about 1,200 bottles distributed in 16 states and over the Internet, said Dr. James Lando, who is leading the team working on the investigation at the Centers for Disease Control and Prevention.

Health officials are looking into an escalating number of illnesses in 10 states — Georgia, Florida, Tennessee, Kentucky, Texas, Louisiana, Michigan, Pennsylvania, Virginia and North Carolina.

No deaths have been reported. One person has been hospitalized.

Reported symptoms include hair loss, discolored and painful fingernails, muscle cramps, joint pain, diarrhea and fatigue. Victims have grown ill five to 10 days after beginning to take affected products. Death is possible but unlikely, health officials said.

The products are distributed by Total Body Essential Nutrition Inc. of Woodstock, Ga. The company did not return a message Friday from The Associated Press.

___


And herein lies the problem-supplements are not regulated by the FDA.  Until they are, I won't be spending money on them.  They're not funded here in Hoosierville either, Timmy.

As for the neuropathy, Neurontin works for me and is covered under my Medicare Part D.  The other supplements mentioned above are not.  So, it's a no-brainer for me.  I did run out of Neurontin once (waiting for the doctor to send a refill to the pharmacy) and got no sleep because of the severity of the PN.  So, I'll continue with the Neurontin, and pay the $3.00 copay.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Lorenzopier

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #31 on: April 20, 2008, 09:15:28 AM »
PRESCRIPTION DRUGS THAT KILL: ANOTHER KIND OF DRUG PROBLEM


http://consumerlawpage.com/article/drugs_that_kill.shtml
« Last Edit: April 20, 2008, 09:19:31 AM by Lorenzopier »

Offline Dachshund

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #32 on: April 20, 2008, 09:27:40 AM »
PRESCRIPTION DRUGS THAT KILL: ANOTHER KIND OF DRUG PROBLEM


http://consumerlawpage.com/article/drugs_that_kill.shtml

Oh I get it you're playing tit for tat. Thank goodness there is some sort of record even though this study is ten years old. This is exactly what we're trying to warn people about it when it comes to supplements, unfortunately there are no studies to fall back on. Thanks for making our point.

PS ALL CAPS IS A NICE SCARY TOUCH!
« Last Edit: April 20, 2008, 09:31:52 AM by Dachshund »

Online Miss Philicia

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #33 on: April 20, 2008, 09:40:08 AM »
PRESCRIPTION DRUGS THAT KILL: ANOTHER KIND OF DRUG PROBLEM


http://consumerlawpage.com/article/drugs_that_kill.shtml

What exactly was the purpose of this post Lorenzopier?  That all of us on HAART are lemmings?  That HAART doesn't really work?  That HAART is damaging our bodies and we should all "stop the meds!"?

Care to elaborate?
"I’ve slept with enough men to know that I’m not gay"

Offline BT65

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #34 on: April 20, 2008, 10:49:20 AM »
OK Lorenzopier.  You take an all-supplement regimen (NO prescription meds) and check back with us in about 5-10 years and let us know how splendidly you're doing.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Lorenzopier

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #35 on: April 20, 2008, 11:20:56 AM »
Please do not think i was trying to make a negative statement about HAART or any type of pharmaceutical.
I have used  HAART for about about five years extensively and i am still amazed at the miraculous results achieved and how HAART has saved my life and also the lives of millions of people who are poz.I do realize that at some point i will eventually have to resume HAART unless a diffrent method of treating hiv has been scientifically proven.Just because a supplement has not been FDA regulated i believe is still not a good reason to not use supplements as a adjunct to conventional medicine or as a way of maintaining health or even alleviating certain conditions so that pharmaceuticals can be saved for use at a later stage in life.Supplement sales have reached $24 billion for 2007 in the US.I think that this type of growth in sales seems to indicate at least in part that people must be achieving a wide range of health benefits from supplements.The post i made in reference to ,PRESCRIPTION DRUGS THAT KILL: ANOTHER KIND OF DRUG PROBLEM, was to show that even with the FDA involvement in regulations of pharmaceuticals, and hopefully someday supplements, there can sometimes still be minor to moderate risks involved in the pursuit of treatment management.
« Last Edit: April 20, 2008, 11:55:42 PM by Lorenzopier »

Offline Dachshund

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #36 on: April 20, 2008, 11:47:07 AM »
.Supplement sales have reached $24 billion for 2007 in the US.I think that this type of growth in sales seems to indicate at least in part that people must be achieving a wide range of health benefits from supplements.

No it doesn't indicate anything without scientific proof. It indicates that the manufacturers of supplements are as adept at advertising and marketing as any other business. Making claims without having to prove it.

You guys continually want to tiptoe right up to the edge suggesting the supplement route is better in the treatment of HIV. This is what you really mean.

I do realize that at some point i will eventually have to resume HAART unless a diffrent method of treating hiv has been scientifically proven.
« Last Edit: April 20, 2008, 11:49:05 AM by Dachshund »

Offline BT65

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #37 on: April 20, 2008, 04:44:21 PM »
Supplement sales have reached $24 billion for 2007 in the US.I think that this type of growth in sales seems to indicate at least in part that people must be achieving a wide range of health benefits from supplements.

Cigarette sales are probably that amount also.  I wonder if people are "achieving a wide range of health benefits" from these as well?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline thunter34

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #38 on: April 20, 2008, 04:51:58 PM »
I wonder how much crack brings in?  (I've read it fights off KS, don'tcha know.)
AIDS isn't for sissies.

Offline thunter34

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #39 on: April 20, 2008, 04:54:41 PM »
And I'm *dying* to know how much cash Enzyte pecker pills are pulling in per year.

[attachment deleted by admin]
AIDS isn't for sissies.

Offline J.R.E.

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #40 on: April 20, 2008, 07:47:54 PM »

Lets try to get back on track. Forget about crack or enzyte :



Her's a pretty good lesson. Read it and make up your own mind, make your decisions :

http://www.aidsmeds.com/articles/Nutrition_4979.shtml


Ray

Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline thunter34

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #41 on: April 20, 2008, 10:31:06 PM »
Here's an interesting perspective to consider:

anyway, i had hoped that all the stuff i was taking would slow the loss of tcells, and i can honestly say nothing works except hiv meds, i tried, herbs, yoga, swimming, vitamins, minerals, coloustrum, tons of stuff, and nothing had the slightest effect, oh well

AIDS isn't for sissies.

Offline BlueMoon

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #42 on: April 21, 2008, 01:54:00 AM »
Lets try to get back on track. Forget about crack or enzyte :

No. . . crack?
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline Merlin

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #43 on: April 21, 2008, 05:22:37 AM »
Well, congrats bimazek, u finally made it to the Hall of Fame by being well quoted here. ;D Has to happen someday when u persevere hard enough.

Thanks Ray for the articles. As usual, u provide a good neutral balance.  :-*

I dun really understand the big shootout here. Is one person taking his/her supplements over the east side gonna kill someone who isn't, over the west..or versa versa? If some decide to spend money to get well anywhich way they choose, hey, that's their reality and money and choice.

And enuff spiel about public duty to educate people from this evil and that already. Cigarettes do indeed kill; only wished we told George Burns much earlier. He could have stayed around way much longer (like 300 maybe) on meds and supplements instead of making those damn tobacco companies so smoking rich. ::)
Maybe we still can; maybe we all can be around much longer too if we all tell the other George to stop lighting up bush fires in someone else's backyard. :o

Case and point: If it doesn't kill you, it makes u stronger, hopefully wiser too.

PS: Never been a fan but on your last post, I have to agree with u, Lorenzopier.  Stay the course, u may just get quoted favorably too one day. ;)
I'll leave Hatred to those not strong enough to Love.

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Offline madbrain

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #44 on: April 21, 2008, 07:56:32 PM »
And herein lies the problem-supplements are not regulated by the FDA.  Until they are, I won't be spending money on them.  They're not funded here in Hoosierville either, Timmy.


Well, the regulations for supplements are evolving.

http://www.healthcare-packaging.com/archives/2007/10/fda_hopes_new_supplement_regul.php

Unfortunately the fact that regulations exist doesn't mean every pill or bottle gets tested/inspected apparently.
It seems Total nutrition claimed to be following cGMP but they still ended up with a big problem with the selenium.

Offline poz1970

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Re: The Great Pro and Anti Supplement Shoot Out!
« Reply #45 on: April 24, 2008, 08:50:53 AM »
Re Supplements,

I just take Mega B Complex, Mega Multi Vitamins, Omega 3, and Spirulina.. (and when I've got the sniffles, I take garlic/horseraddish and vitamin C tablets)... and maybe 2-3 cups of green tea with mint every day... seems to serve me well...

I might be pissing my money down the drain, I don't know.. I do know after starting the Spirulina, I started to feel ALOT better, and the Mega B is great when I'm feeling really really flat.


J
"The Bible contains 6 admonishments to homosexuals and 362 admonishments to  heterosexuals. That doesn`t mean that God doesn`t love heterosexuals. It`s just that they need more supervision." -- Lynn Lavne

 


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