OK I'm asking the illusive Vitamin Question? Which do you think is best?

[seekingtruth75]

Hey all -
First thanks or all your kind words as I started Atripla last week. So far its been really making me feel better, I can certianly notice a jump in the amount of energy I have.

Ok new question...I have read alot about KPAX vitamins and they seem pretty good. They are covered under my ADAP so I figured I would give them a shot. What do you guys out there like to use vitamin-wise? Any other reccomendations?

Many thanks!

[Matty the Damned]

The KPAX issue was discussed at some length here.

MtD

[J.R.E.]

http://www.hopkins-hivguide.org/q_a/patient/alternative_therapies/using_high_doses_of_multivitamins__e.g._kpax_.html?contentInstanceId=431439&siteId=7151




Myself, I take one Centrum Silver a day. It's a lot less expensive.




Ray

[J.R.E.]

Hello,

Just one thing, the new formulation of Centrum is iron free. Which is a good thing, if your a guy.

Here's some more reading for ya ;


http://forums.poz.com/index.php?topic=234.0


And from the lessons :


http://www.aidsmeds.com/articles/Nutrition_7670.shtml



Take care-----Ray

[mjmel]

I take GNC's Mega Men's. Honestly, I think any multi vitamin/mineral combo works to supplement diet. I don't always eat balanced meals..........so I supplement.
I note a difference in energy level between taking them and skipping a week. I am a 58 yr. old male and 17 yrs. positive.
Currently, Meds are: truvada, norvir and invirase.

Mike M

[vokz]

My opinion, for what it is worth …

Don’t waste your money on puffed up crap like K-PAX .. unless you have a particular reason for wanting to make your urine expensively rich in fabulous micronutrients. As far as I am concerned, K-PAX is an unforgivable and contemptuous exploitation of people living with HIV.

Jon Kaiser makes big claims for K-PAX .. but be aware that he has never backed most of them up, that his not very scientific ‘study’ only enrolled 40 patients, was limited to a paltry twelve weeks and that (contrary to Kaiser’s own not very credible claims) other far more comprehensive studies have all shown that a cheap multivitamin will give EXACTLY the same benefits .. and that micronutrient deficiencies are, in any case, much less common in people taking antiretrovirals.
 
Unless you have an identified mineral / vitamin deficiency, a healthy varied diet should take care of all your needs.

If your diet is suspect (or even if you just want some peace of mind) by all means take a good all-purpose multivitamin and mineral supplement .. but at all costs (and costs is one thing it will give you plenty of) avoid K-PAX and the sort of bizarre, unsupervised and potentially dangerous mega-dosing that is advocated by some.

PS: If you made your way over to the other discussion – kindly highlighted by Matty - you will see that a number of people are giving undue weight to an ‘interview’ with Jon Kaiser in Positive Nation. K-PAX’s UK distributor (a man with no medical qualifications who owns several of London’s gay bars) is one of the largest commercial advertisers (probably THE largest non-pharma advertiser) in Positive Nation. Please note that the ‘interview’ is little more than an infomercial, that the publication is very careful not to endorse the product and that not a single one of Kaiser’s claims about K-Pax has ever been supported by any of the medical writers in the same publication (draw your own conclusions, but that seems quite significant to me .. especially when you also consider that several members of the editorial team actually drink at one of the distributor's bars and still can't bring themselves to endorse the product).

Mark – who supplements with a regular, cheap, readily available all-purpose multivitamin & mineral pill

[RapidRod]

I don't take anything. My blood tests don't show a need to supplement anything.

[redhotmuslbear]

I use the store-brand men's vitamin from Target.  Designer labels like K-Paz and even GNC are just more pissing money away.


David

[mjmel]

No matter what brand you decide on--your body uses what it can then you piss out the extras. Daily.

Mike M

[risred1]

Well, here we go again.

If you are HIV positive, then supplements may in fact provide a number of benefits.

The elements that is in Kaisers Formula Feature:

Selenium

Alpha Lipoic Acid

Acetyl L Carnintine

NAC

Glutamine

and the usual suspects for B Vits C and E and minerals.

For those who are stating that the featured supplements are without merit are simply out of step with recent research. I believe the overtly negative statements regarding supplement usage is highly prejudicial and only justifies a personal view towards supplementation. I challenge anyone who say that supplements offer no value to consider  the latest regarding treatment of PN with Acetyl L Carnintine. I think the conversation needs to be elevated to talk about specifics components of supplementation rather that throwing them all under the bus.

I am not advocating over supplementation, or mega dosing.

What I am advocating is the understanding that the metabolic, inflammatory, digestive and immunological impacts of HIV and Meds that can be offset by these supplements. It is not necessary to take K-PAX, whose main advantage is that it is a combo of nutrients. One can create a similar profile with a quality chelated multivitamin, and the featured supplements listed above from discount stores or buyers clubs.

Add some ECGC, MSM, Probiotics, Vitamin D, Omega 3 and now your looking at my formula.

Now lets talk about diet.

A good diet can supply the nutrients you need for a normal healthy body. A person who is POZ may be challenged to get the nutrition one needs to offset the metabolic, digestive, inflammatory and immunological impacts of HIV.

One can easily get the Omega 3 one needs by eating Walnuts and Flax seeds as well as the right fish and other stuff. One can get Vitamin D by going outside and sitting in the sun for 15 minutes a day. One can get fresh probiotics from Yogurt. But One has to do or consume these things pretty regularly. For those of us who don't get enough sun, omega 3, helpful bacterial, there are supplements to fill the gap.

What a diet can't do is provide Alpha Lipoic Acid as an anti inflammatory for those of us with Liver Issues. What a diet can't do is provide Acetyl L Carnitine for PN, although there are other diet considerations that may also be effective, And if your having digestive issues to begin with, where are you going to get glutamine to help with that?

Those who are doing well with their diets and exercise, I'm more that thrilled for you. Hooray!

But I'm going to take my supps and work my diet and exercise in combination. And for personal experience, well, my CD4 and percentage is up on this regimen 30% of which 20% is since I've added ECGC. Will it last forever? No it won't, because HIV will eventually overpower my immune system. But it might by me some time and provide some protection from the side effects of HIV. I've had some shaky moments, but overall, its working out so far.

[vokz]

For those who are stating that the featured supplements are without merit

And has anyone actually said that? .. or are you just imagining these supposedly “overly negative statements”?

[vokz]

Risred

I would love to know where you are getting your information on lipoic acid, L-carnitine and glutamine and not being able to get these from a healthy diet.

Lipoic acid is found in abundance in the kidney, heart and liver meats of any animal .. as well as spinach, broccoli and potatoes.

Meat, poultry, fish, and dairy products are all naturally rich sources of L-carnitine.

Glutamine is the most abundant naturally occurring non-essential amino acid in ANY meat and dairy product. Pulses, spinach, parsley and cabbage also provide plentiful amounts.

With all of these substances, science consistently shows that the percentage absorbed when taken via oral supplementation is MUCH lower than that from food sources.

In fact, IF we do have a deficiency, then (unless you have special needs and a qualified medical professional has advised you otherwise) rather than supplementing with L-carnitine, lipoic acid and glutamine; science (rather than the supplement industry) actually tells us that the vast majority of us would be FAR better off (in both finances and health) with a single cheap B-complex formula (in fact, lets make that B complex + B12 formula, so we have anaemia and dementia covered too) to increase the retention of the abundant L-carnitine, lipoic acid and glutamine ingested from natural food sources.

And yes, if you are already taking the B complex formula, then you probably are just pissing the lipoic acid, L-carnitine and glutamine straight down the drain.

[redhotmuslbear]

But I'm going to take my supps and work my diet and exercise in combination. And for personal experience, well, my CD4 and percentage is up on this regimen 30% of which 20% is since I've added ECGC. Will it last forever? No it won't, because HIV will eventually overpower my immune system. But it might by me some time and provide some protection from the side effects of HIV. I've had some shaky moments, but overall, its working out so far.

Risred,

An uncontrolled sample size of ONE does not yield scientifically valid conclusions.  You cannot say conclusively that any of your supps did one thing or another, other than cost you money and affect the look and smell of your urine.

David

[risred1]

1st - Here is an interesting location to look up information on supplements.

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

NYBC is a Non-Profit Organization. Jon Kaiser does sit on their board. NYBC, however, does not sell KPAX. They do offer ways to build your own combo, and provide a more than fair price for their supplements. I don't get all my supps from them, but get my Multi - Amni - extra protection without Iron, and DHA, 7-Keto- DHEA, Astragalus, Glutamine, etc. from them. I get my Acetyl - l - Carnitine and Alpha Lipoic Acid from Bronson in a combo. ECGC from another supplier and so forth. I do spend about 100 bucks a month on my supplements. Something I acknowledge not everyone can afford to do. Some supplement are available as prescriptions and may be covered by ADAP. Acetyl-L-Carnitine is one of them.

Also: from our own Aidsmeds.com on Acetyl-L-Carnitine:

Acetyl-L-Carnitine Promising for Neuropathy

October 1, 2007
In a recent article in the journal CNS Drugs, Michael Youle, MD, a noted HIV specialist at London’s Royal Free Hospital, claims that acetyl-L-carnitine (LAC), an over-the-counter amino acid supplement, is a promising treatment for a condition known as peripheral neuropathy. Characterized by alternating numbness, tingling and pain in the feet, legs, hands and arms, peripheral neuropathy is nerve damage that can result from the use of certain antiretroviral medications, predominantly Videx (didanosine) and Zerit (stavudine). There are currently few treatments for neuropathy, and none are highly effective.

In the article, Dr. Youle reviews several small studies that have explored whether taking LAC can protect people from developing neuropathy or treat people who have already developed it. One early study found that people who took LAC (1500 mg twice a day) showed evidence of both nerve regeneration and a reduction in painful symptoms. A somewhat larger study, published early this year, found that LAC was significantly better able than a placebo to alleviate neuropathy symptoms.

Many people with HIV have developed resistance to a number of antiretroviral medications and must use drugs like Videx and Zerit to build an effective antiretroviral regimen. Physicians need an effective method to prevent neuropathy from developing, if possible, and to treat it when prevention is not possible, writes Dr. Youle. He concludes that LAC shows promise in this regard and deserves larger studies to prove its effectiveness.
-------
I don't mind being corrected if I'm wrong. And I know deep down that this can be a shady business. I'm not trying to "sell" supplements. I'm trying to cope with my own issues regarding problems I am having, such as keeping my CD4 count up, my elevated Liver Enzymes under control, my lipids where they should be, my energy level up, my HIV related digestive issues managed. I use anything I can get my hands on including diet and natural sources in addition to my supplements. For example, Oatmeal with 1/4 cup or more of Walnuts for my breakfast, to help me with cholesterol management and a high Omega 3 source.

I can happily show improvement of my number since my CD4's dipped under 400 and my Cholesterol is considered in the Normal Range, My Triglycerides are in the normal range, My Liver Enzymes were at times a 0 from around 200 count, although they have edged up from 0, and my digestive function has been improved from when I was having "issues" and taking immodium regularly - now it is a rare need. Some of these supps I take are preventative. Some are due to my age. (DHEA and MSM).

So if your not having any problems and everything is fine, does that mean you need to supplement? That's a personal question as some may want to take a "preventative" view on some of these supps. But I can respect an answer that says no.

But we are not all in the same boat so to speak. All I'm trying to present is there are issues that supplements may provide assistance with in managing aspects of HIV infection and its side effects and med side effects. At least whether its a pill or from the food you eat, getting these substances may provide some benefit.

As opinions differ, I don't want to state my conclusions as "fact". But I am, perhaps to only myself, justifying my use of supplements in context that there are opinions that are just the opposite.  Any of us are entitled in a public forum to throw something under the bus or relegate something as useless. The Vitamin Water thread is a pretty good case and point. However, look at all the attention paid to that thread. Meanwhile, someone who has grant money to perform a study on supplements asks for opinions on what folks would like to see studied, and suddenly, no one has an opinion.

So, perhaps in vain, I try to put some information out there on a regular basis to let folks know that if you have nausea  or diarrhea  or PN or other things going on, there may be "non-medical" things to you can do to treat those conditions, and they may be worth a try.

I do worry that, that folks who take a dim view toward supplements often take that blanket view and apply it to everything. As can be demonstrated with the potential of Acetyl-L-Carnitine in the treatment of PN, perhaps that blanket view isn't where we should be.

Looking back, this thread is about K-PAX and that is controversial enough through the differing view of Kaiser. I can accept one opinion that Kaiser is just a shill for his product, and his formula is way overpriced and unverified in efficacy. But if we examine what is in K-PAX and explore what the foundation for including Selenium, Glutamine, Alpha Lipoic Acid, NAC and Acetyl-L-Carnintine, there may be more than Kaisers face to consider.

Respectfully submitted for your consideration.

rised1

[vokz]

Risred,

It is unfortunately YOU who is guilty of taking the blanket view in your banal and single-minded desperation to pimp the New York Buyers Club (yes, I know you keep telling us that you aren’t trying to promote them, but the fact that you keep having to tell us all that you claim not to be should tell you that you continue to come across as if you are).

You are arguing against an argument that hasn’t even been put forward.

I repeat: No-one is saying that supplements are a bad thing, provided there is an identified need to be taking them.

The whole point is that supplements aren't benign substances - that routine unnecessary supplementation can very often do more harm than good and that the risk of creating toxicity through supplementation is very real.

In the developed world – yes, even amongst us pozzers - toxicity through supplement overload is twice as common as the very deficiencies people are trying to guard against by taking the supplements in the first place. That is why it is so important to speak to your doctor about what you are doing.

All of the supplements you mention have an undoubted value; but the value is there where there is a diagnosed problem/deficiency.. not as an unsupervised one-size-fits-all scattergun prophylaxis.

Seekingtruth75 isn't indicating that he has any specific problems.

Seekingtruth75 has only just started treatment and he isn't even taking any of the particular NRTIs that are commonly associated with peripheral neuropathy.. yet here you are advocating routine and unsupervised supplementation with Acetyl-l-carnitine on the basis of Mike Youle's 2004 study into the use of Acetyl-l-carnitine to treat patients with diagnosed peripheral neuropathy AND who also (because of their medications) have an identified suppressed serum level of Acetyl-l-carnitine.

I have spoken to Mike Youle on countless occasions and he certainly doesn't advocate the use of Acetyl-l-carnitine as a prophylaxis (which is exactly what you are doing). Indeed, he would probably be quick to caution you that unnecessary supplementation with that particular substance can in itself cause rash, appetite disturbance, nausea, vomiting, agitation and a particularly unpleasant and antisocial body odour .. sypmtoms that most people on antiretroviral regimes are trying to avoid.

He would also point out that peripheral neuropathy is more commonly associated with a deficiency in vitamin B12 (a lack of which, amongst other things, prevents the absorption of the usually abundant supply of L-carnitine in most diets) and that it would be far cheaper, safer and efficient to guard against that vitamin B12 deficiency occurring in the first place (and therefore also the need for most of us to be taking any of the supplements you are advocating over-and-above what is in a standard broad-spectrum multivitamin).

Seekingtruth75 is on drugs that are known to increase the levels of both triglycerides and LDL (bad) cholesterol. You are advocating Omega 3, which is fine for triglycerides .. BUT which notoriously increases LDL cholesterol quite dramatically and could result in him having to take otherwise unnecessary statins to control his cholesterol levels.  Should he really be taking that if he doesn’t need to?

I agree that there may be more than Kaiser’s face to consider. There is Seekingtruth75’s health and well-being to consider. I could go on, but I am sure you get the point (IF you want to).

Respectfully submitted for YOUR consideration, Risred.

[J.R.E.]

He would also point out that peripheral neuropathy is more commonly associated with a deficiency in vitamin B12 (a lack of which, amongst other things, prevents the absorption of the usually abundant supply of L-carnitine in most diets) and that it would be far cheaper, safer and efficient to guard against that vitamin B12 deficiency occurring in the first place (and therefore also the need for most of us to be taking any of the supplements you are advocating over-and-above what is in a standard broad-spectrum multivitamin).

Just to add,....It has also been known that too much vitamin B-6,  ( 200mg a day) can contribute to PN. Be cautious on the B-6.

Ray

[risred1]

Just to make sure I provide background.

All my supplements have been reviewed by my specialist. He is not concerned with my dosage or is not aware of any significant issues with the supplements I am taking.

He has also told me that "whatever I'm doing, keep it up." He's been telling me for 2 years that I need to prepare myself for meds soon. The fact that my CD4 have gone up 30% is unusual.

And I really don't care if the stance is, I'm a shill for NYBC. They have helped me and many others get the supplements I want at a good price. Their charter and mission I find to be what I would want from a non traditional medical support point of view. i am a happy customer, and will continue to point folks to them as a resource.

And if I'm taking this "blanket" view that there are folks who are stating that supplements are of no value, well let put it this way, there are plenty of posting that are not in favor of supplementation on ground that its a waste of money, or, there is no proof, or, you can get everything you need from food, which is fine, but anti supplement. I don't know how you can view that any other way.

I repeat that I am not selling supplements. But if folks rather take immodium over glutamine, well I sorta wonder why. And when folks are have nausea and can try ginger, I wonder why. And if in the Winter Month you don't get sun, you should take Vitamin D.

And if you have Liver issues as I do, well, I take Alpha Lipoic Acid. What am I supposed to do, here? I do believe this is helping. I can lie low and not share, but I'm not thinking that is the right thing to do. Am I being dangerous. All these substances are sold over the counter and have guidelines on how much to take and what they may or may not interact with. And one should alway review anything they are taking with their specialist.

Sorry if I'm pissing folks off. That's just the way it going to have to be. Nothing is going to be resolved here.

 

[madbrain]

Just to add,....It has also been known that too much vitamin B-6,  ( 200mg a day) can contribute to PN. Be cautious on the B-6.

Ray

Yes, most substances can cause problems when taken in excess. Always look up the upper tolerable intake level (UL) for anything you take, if it exists. Most vitamins have one set.  For B6, the UL is 100 mg per day. See http://dietary-supplements.info.nih.gov/factsheets/vitaminb6.asp . You can also see on the same page that the RDA for B6 is from 1.3 to 1.7mg depending on age and sex. That gives quite some room in between to decide how much to take.

Personally, I take 75 mg of B6 - 25mg in my multivitamin, and 50mg in a separate B6 tablet.

Anyone supplementing has to be cautious. It is wise to ask your doctor, even if he is not the one prescribing. He can check those UL for you and tell you if it's OK or too much. I take a large number of supplements and ran the whole list by him. Right now, he thinks I'm probably not benefitting a lot from them. But as long as he is reasonably confident they are not harming me, I'm going to take the chance.

[milker]

Don't take Vitamin B if you're into watersports.

Milker.

[madbrain]

Volkz,

In this forum we all share the same virus, at various degrees. There has been a lot of research on many supplements. It's impossible for risred1 or anyone else to quote it all everytime they mention one supplement. Many supplements were shown in (small) studies to be beneficial to CD4/VL, even without having the other extra conditions that you cite. I think it's fair to be recommending to be looking into them, even if one isn't on HAART or suffering from side effects such as peripheral neuropathy.

On the subject of l-carnitine (not acetyl ...), there was another study done at http://bloodjournal.hematologylibrary.org/cgi/content/full/91/10/3817?ck=nck which showed it increased CD4.

There is another paper that talks about acetyl l-carnitine at http://www.thorne.com/altmedrev/.fulltext/5/4/290.pdf . That one references many other studies and talks about other supplements. They are all small, but to me it was sufficiently interesting to make me considering trying them, and letting my doc know I was taking them, of course.

At 500mg/day acetyl l-carnitine, i haven't seen any of the side effects you described. Mike Youle's study used much higher doses, however, like 3g per day, which would indeed be very expensive.

And I also take a multi and extra B12, and had my doc check my levels, and they are good.

As far as omega-3 increasing LDL cholesterol, I'm not sure this is really settled.

Here is a list of studies (done on dialysis, not HIV patients) http://cjasn.asnjournals.org/cgi/content/full/1/2/182/T1 . Many of them actually found omega-3 actually decreased the LDL cholesterol.

In truth, I wish the doctors were a little bit more interested in considering the use of supplements as prophylaxis.  One only gets a limited amount of time with their physician. So we get to look for a lot of the information ourselves. That is one the point of these forums. The doc still gets involved to check that things are OK.

Risred,
I repeat: No-one is saying that supplements are a bad thing, provided there is an identified need to be taking them.

The whole point is that supplements aren't benign substances - that routine unnecessary supplementation can very often do more harm than good and that the risk of creating toxicity through supplementation is very real.

In the developed world – yes, even amongst us pozzers - toxicity through supplement overload is twice as common as the very deficiencies people are trying to guard against by taking the supplements in the first place. That is why it is so important to speak to your doctor about what you are doing.

All of the supplements you mention have an undoubted value; but the value is there where there is a diagnosed problem/deficiency.. not as an unsupervised one-size-fits-all scattergun prophylaxis.

Seekingtruth75 isn't indicating that he has any specific problems.

Seekingtruth75 has only just started treatment and he isn't even taking any of the particular NRTIs that are commonly associated with peripheral neuropathy.. yet here you are advocating routine and unsupervised supplementation with Acetyl-l-carnitine on the basis of Mike Youle's 2004 study into the use of Acetyl-l-carnitine to treat patients with diagnosed peripheral neuropathy AND who also (because of their medications) have an identified suppressed serum level of Acetyl-l-carnitine.

I have spoken to Mike Youle on countless occasions and he certainly doesn't advocate the use of Acetyl-l-carnitine as a prophylaxis (which is exactly what you are doing). Indeed, he would probably be quick to caution you that unnecessary supplementation with that particular substance can in itself cause rash, appetite disturbance, nausea, vomiting, agitation and a particularly unpleasant and antisocial body odour .. sypmtoms that most people on antiretroviral regimes are trying to avoid.

He would also point out that peripheral neuropathy is more commonly associated with a deficiency in vitamin B12 (a lack of which, amongst other things, prevents the absorption of the usually abundant supply of L-carnitine in most diets) and that it would be far cheaper, safer and efficient to guard against that vitamin B12 deficiency occurring in the first place (and therefore also the need for most of us to be taking any of the supplements you are advocating over-and-above what is in a standard broad-spectrum multivitamin).

Seekingtruth75 is on drugs that are known to increase the levels of both triglycerides and LDL (bad) cholesterol. You are advocating Omega 3, which is fine for triglycerides .. BUT which notoriously increases LDL cholesterol quite dramatically and could result in him having to take otherwise unnecessary statins to control his cholesterol levels.  Should he really be taking that if he doesn’t need to?

I agree that there may be more than Kaiser’s face to consider. There is Seekingtruth75’s health and well-being to consider. I could go on, but I am sure you get the point (IF you want to).

Respectfully submitted for YOUR consideration, Risred.