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Author Topic: K PAX immune support  (Read 11620 times)

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Offline tommy246

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K PAX immune support
« on: May 11, 2009, 03:32:49 PM »
I am thinking of buying this product and taking it instead of my regular pills which are 1 multivitamen with minerals,2 omega 3,1 B vitamin ,and 1 primose oil antioxident,any thoughts on K PAX.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline Ann

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Re: K PAX immune support
« Reply #1 on: May 11, 2009, 04:20:53 PM »
Tommy,

I've moved your thread to the Nutrition forum, which is the more appropriate place for supplement discussions. There are already several threads that discuss K-Pax, use the search function and you'll find loads of info.

Ann
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Offline madbrain

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Re: K PAX immune support
« Reply #2 on: May 13, 2009, 05:11:26 AM »
I am thinking of buying this product and taking it instead of my regular pills which are 1 multivitamen with minerals,2 omega 3,1 B vitamin ,and 1 primose oil antioxident,any thoughts on K PAX.

If you review the formulation of Kpax immune support, you will see that it doesn't have omega-3. So, you still need to continue taking separate omega-3. I'm not sure about "primose oil antioxident".

I think k-pax is a good multi-vitamin, but it is pricey. You can get the same thing for half the price if you are buying its individual ingredients, but it will be more pills.

Offline Pozibilities

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Re: K PAX immune support
« Reply #3 on: June 14, 2009, 09:10:30 PM »
My naturopath has had me on K Pax going on a year and it is very smooth and seems to work really well.

Offline newbie05

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Re: K PAX immune support
« Reply #4 on: June 15, 2009, 09:16:27 PM »
We are all so different in the way our bodies handle  things. I went on the K Pax immune support. I lasted about 3 months. At the time, I was not on meds. My t-cells made a sharp decline and viral load went up. Showed my dr. what I was taking. She said, "Please don't ever take these again".  When I got off, my viral load went back down and t-cells shot up nicely. Someone else may take them and it turn out great.

Offline mewithu

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Re: K PAX immune support
« Reply #5 on: June 15, 2009, 11:54:40 PM »
Expensive urine is about all vitamins are. If it works for you take them though.
1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like,  two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea,  Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. 
(2010 Now doing OK cd4=210  VL= < 75)
I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects.  I have the wasting syndrome, Fatigue  . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

Offline Pozibilities

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Re: K PAX immune support
« Reply #6 on: June 16, 2009, 09:46:44 AM »
Much evidence to refute that, but I respect your opinion

Offline Merlin

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Re: K PAX immune support
« Reply #7 on: June 16, 2009, 02:28:18 PM »
Expensive urine is about all vitamins are. If it works for you take them though.

If however one practices Uropathy aka urine therapy, then nothing is wasted. Those expensive vitamins and traces can be put to great use.  ;D

PS: Don't knock it if you haven't tried it. ;)


If you review the formulation of Kpax immune support, you will see that it doesn't have omega-3. So, you still need to continue taking separate omega-3. I'm not sure about "primose oil antioxident".

I think k-pax is a good multi-vitamin, but it is pricey. You can get the same thing for half the price if you are buying its individual ingredients, but it will be more pills.


(From their website)
K-PAX Immune Support Formula contains therapeutic dosages of potent micronutrients in the optimal combination to best support healthy immune function. Some of the key ingredients in our formula include:
Zinc 30 mg ...
Selenium 200 mcg
Alpha Lipoic Acid 400 mg
Acetyl-L-Carnitine 1000 mg
N-Acetyl Cysteine (NAC) 1200 mg
Price: $39.95 (120 caps)

-----------------------

To be fair, looking at the dosage of each supplement (120 caps), it may will be more pricey if one buys them separately*, given ALA and NAC are expensive supplements to begin with; plus definitely more pills to take now; :o

Zinc 200 mcg ($ 5.04 )
Selenium 200 mcg($ 6.62 )
ALA 1000mg($30.99)
NAC 1200mg ($22.99)
Price: $65.64

*Price sources: GNC, Vitacost, Twinlabs
« Last Edit: June 16, 2009, 02:34:16 PM by Merlin »
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Offline mecch

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Re: K PAX immune support
« Reply #8 on: June 16, 2009, 04:09:44 PM »
I would enjoy to read a good investigative article on K PAX.  How they got ADAP approval in states, the doctors who support their use and the doctors who do not.
They are costing individuals and taxpayers a lot of money.  What is their exact utility now, 2009, and for whom.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Luke

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Re: K PAX immune support
« Reply #9 on: June 27, 2009, 03:48:22 AM »
Quote
Much evidence to refute that, but I respect your opinion

What is this evidence then? The only 'evidence' I have ever seen was a laughable and quite unscientific study carried out by Jon D. Kaiser, the guy whose formulation it is. I have on the other hand seen plenty of solid evidence to support the expensive urine theory.

Even if you take Jon Kaiser's study at face value, there were only two areas in which there was a significant difference between K-PAX and a totally inert placebo:

  • peripheral neuropathy
  • CD4 counts

Even the CD4 count 'evidence' is totally undermined by the fact that the patients in the placebo group saw an overall fall in their CD4 counts - which is quite remarkable when you consider that each and every one of them was taking combination therapy at the time - so that would suggest that half the people here (myself included) would be dead by now if that is the effect that taking your HIV meds really has.

So, peripheral neuropathy aside, there isn't actually any remotely credible suggestion that K-PAX will do anything for you that doing nothing at all, or simply supplementing with any of the multitude of much cheaper generic micronutrient supplements, will do.

As far as peripheral neuropathy is concerned; I don't think anyone in their right mind would expect an inert placebo to help with that; but simply adding a cheap generic version of acetyl L-carnitine, N-acetyl cysteine or alpha lipoic acid to your generic vitamin pill will probably deliver all the supposed benefits that K-Pax does (and still save you more than 90% of the extortionate cost of K-PAX).

And of course, if you aren't on treatment and unfortunate enough to be suffering from peripheral neuropathy; then there isn't actually a single shred of evidence (not even from K-PAX or Jon Kaiser himself) to support the belief that K-PAX, over a cheap broad-spectrum multivitamin & mineral pill, does anything other than give you the very expensive urine that has already been mentioned.

There is abundant evidence to support the idea that a daily broad-spectrum multivitamin will improve the general health and CD4 counts of those in resource limited settings / nutrient restricted diets, who are not yet on treatment; but it takes a major act of deception to turn that into evidence that would support spending a small fortune on potentially dangerous mega-dosing, with several hundred times the daily recommended safe limits of certain substances .. and it is a hard fact that, in the developed world, most people with HIV quite simply are not deficient in most of the nutrients that you are mega-dosing on when you take K-PAX.  

At UK prices:

  • K-PAX, as used in Kaiser's study, would come in at £1,199.40/year (£719.40 if you opt for the single strength formulation) - plus another £59.40 in delivery costs, if you don't buy in bulk.
  • A perfectly adequate standard broad-spectrum multivitamin & mineral pill, plus an acetyl-L-carnitine and alpha lipoic acid supplement, can easily be sourced on your local high street (Boots, GMC or Holland & Barrett) for less than £50/year - so that's less than the delivery costs alone on K-PAX - and comes in at closer to £30 if you shop wisely when certain retailers (GMC or Holland & Barrett) run their regular cycle of product promotions.
  • Right now, using a random online retailer with no price promotions, a 360 day supply of multi-vitamins, minerals and micronutrients (£12.99) along with acetyl-L-carnitine & alpha lipoic acid (£35.98) - so that's a grand total of just two pills a day - comes in at £48.97 with free delivery.

By my calculations, that makes K-PAX enriched urine more than 25 times more expensive than any other evidence suggests it needs to be; which probably explains why I've never met a single HIV specialist who doesn't consider it to be tantamount to an exploitation racket and that it is far better, and safer, to target specific identified deficiencies.
« Last Edit: June 27, 2009, 08:40:14 AM by Luke »

Offline madbrain

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Re: K PAX immune support
« Reply #10 on: June 27, 2009, 05:24:54 AM »
Merlin,

To be fair, looking at the dosage of each supplement (120 caps), it may will be more pricey if one buys them separately*, given ALA and NAC are expensive supplements to begin with; plus definitely more pills to take now; :o

Zinc 200 mcg ($ 5.04 )
Selenium 200 mcg($ 6.62 )
ALA 1000mg($30.99)
NAC 1200mg ($22.99)
Price: $65.64

*Price sources: GNC, Vitacost, Twinlabs


I spent some time putting together my supplement regimen. One of its goals was to clone all the ingredient of k-pax. It can really be done for much less than the "single dose" k-pax . It does take work and a complicated spreadsheet to match the dosage of all the individual nutrients.  One of the tricks is to start with a good multi that already includes selenium 200mcg and zinc. So there is no need to buy separate pills for those.

Also, you are not taking into account the pillcount, you just added the cost of individual supplements ignoring how many need to be taken per day.
From iherb.com :

Examples, from iherb.com :

Jarrow NAC 600 * 100 = $14.67 . You take 2/day, that's a 50 day supply. So the NAC monthly cost is only 14.67/50*30 = $8.80 .

NOW Alpha lipoic acid 600mg *120 =  35.08 . You only need 1/day. So that's a 120 days supply. Monthly cost = 35.08/4 = $8.77

K-pax costs $74.95/month for their "single-strength" product.

I have described the "K-pax clone" part of my regimen in this post :
http://forums.poz.com/index.php?topic=26331.msg329451#msg329451

It is made of 10 different products and a total of 14 capsules/tablets per day - compared with 8 for K-pax. The daily cost is $1.63 . Or $48.90 per month - compared with $74.95 for K-pax . That's 2/3rd of the price.
And if you buy in bulk like I do (for one year), you can get discounts up to 16% off and free shipping. So it ends up costing closer to half of K-pax. I am not affiliated with Iherb - just a happy customer.

I will admit it is more complicated with the pill boxes to have so many different products to take. With K-pax I believe the capsules are all identical (not sure since I never bought it), so you just need to take 8 of them, no need fort sorting.

Offline mecch

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Re: K PAX immune support
« Reply #11 on: June 27, 2009, 06:33:37 PM »
By my calculations, that makes K-PAX enriched urine more than 25 times more expensive than any other evidence suggests it needs to be; which probably explains why I've never met a single HIV specialist who doesn't consider it to be tantamount to an exploitation racket and that it is far better, and safer, to target specific identified deficiencies.

Wow great post Luke, thanks.

And anyone have any explanation how this got ADAP coverage in some states?  Was it more a function of the state of things in the year it was approved for coverage?  That's what i suspect.... 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Merlin

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Re: K PAX immune support
« Reply #12 on: June 28, 2009, 02:46:50 AM »
Merlin,

Also, you are not taking into account the pillcount, you just added the cost of individual supplements ignoring how many need to be taken per day.


You may have misread my post. I believe it's clear my comparison shows it is more expensive to buy pills separately and more pills to pop otherwise. ??? ::) :P
I'll leave Hatred to those not strong enough to Love.

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I forgive them for everything.

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Offline madbrain

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Re: K PAX immune support
« Reply #13 on: June 29, 2009, 06:35:51 AM »
You may have misread my post. I believe it's clear my comparison shows it is more expensive to buy pills separately and more pills to pop otherwise. ??? ::) :P

I think I read your post correctly, and I responded by showing you that your math is wrong - it can be much less expensive to buy the individual pillls than K-PAX, even though it will be more pills to pop.

To reiterate, your math is wrong because you are adding up the price of individual supplement bottles that will last much longer than one month, and then comparing that sum against the cost of one month of K-PAX. That's a meaningless comparison.

Offline madbrain

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Re: K PAX immune support
« Reply #14 on: June 29, 2009, 07:15:46 AM »
And of course, if you aren't on treatment and unfortunate enough to be suffering from peripheral neuropathy; then there isn't actually a single shred of evidence (not even from K-PAX or Jon Kaiser himself) to support the belief that K-PAX, over a cheap broad-spectrum multivitamin & mineral pill, does anything other than give you the very expensive urine that has already been mentioned.

There is also no evidence that K-PAX is less helpful in people not on treatment than in people on treatment. Placebo-controlled trials are generally considered unethical in HIV/AIDS meds. We will never know exactly because it would endanger the life of too many patients to have one group taking placebo and another group taking k-pax. That doesn't mean the second group wouldn't see some benefit.

Even new HIV drugs are compared with some other existing treatment that did have some placebo-controlled trials before, not against an actual placebo.

There have however been many studies about some of the individual nutrients in K-PAX and their benefits in HIV. Many of them were in people not on HAART, before HAART existed, or in populations who couldn't afford meds (HAART or pre-HAART). Don't you think some of that research can be applied to K-PAX too to figure out the answer to its effect in people not on HAART ?

Quote
There is abundant evidence to support the idea that a daily broad-spectrum multivitamin will improve the general health and CD4 counts of those in resource limited settings / nutrient restricted diets, who are not yet on treatment; but it takes a major act of deception to turn that into evidence that would support spending a small fortune on potentially dangerous mega-dosing, with several hundred times the daily recommended safe limits of certain substances .. and it is a hard fact that, in the developed world, most people with HIV quite simply are not deficient in most of the nutrients that you are mega-dosing on when you take K-PAX. 

At UK prices:

I think you make two separate arguments. One about the price, and one about the usefulness or toxicity of the product.

On price, nobody needs to pay the inflated UK K-PAX prices when they can get essentially the same product for 2/3rd of the US price or less by ordering the individual ingredients.

On toxicity, I haven't seen anything in K-PAX that was above safe limits, let alone by several hundred times. And I checked the FDA and many other websites for the upper intake levels when I put together my K-PAX clone to make sure it was OK. I think as long as you use the K-PAX formula for the "single strength" product, you won't get close to the safe limits. The double strength one is another matter. K-PAX recommends it for anyone above 120 lbs. I wonder why at that exact cutoff one needs 2x as much supplements. I weigh 150 lbs and I would not use the double strength. Perhaps if I weighed 250+ lbs I would consider using the double strength dosage but I'm not sure even then.

Some B vitamins in K-PAX are indeed far in excess of the recommended values, but that doesn't mean they are unsafe - any excess will pass in urine as you well know. Just check the formulation for any B-complex supplement and you will see doses far above recommended. Essentially the K-PAX regimen includes a b-complex. I don't think it's a bad thing. But if you don't like the color of your urine, you can always build a similar combo without the high amount of B vitamins.

Offline Luke

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Re: K PAX immune support
« Reply #15 on: June 29, 2009, 07:33:01 AM »
Madbrain, I've never in my life read anything more twisted, desperate, uninformed and totally irresponsible.

Offline Luke

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Re: K PAX immune support
« Reply #16 on: June 29, 2009, 07:40:43 AM »
Quote
Just check the formulation for any B-complex supplement and you will see doses far above recommended. Essentially the K-PAX regimen includes a b-complex. I don't think it's a bad thing. But if you don't like the color of your urine, you can always build a similar combo without the high amount of B vitamins.

I know no such thing, because it is just plain wrong and a figment of your imagination. If excess vitamin B is harmlessly passed in the urine, how come then that there are so many well documented conditions - including, quite ironically, peripheral neuropathy - resulting from vitamin B toxicity? Maybe it is time you stop making wholesale quotes from the bizarre drivel they include in the K-PAX promotional.

Kaiser is the lunatic making unsubstantiated claims and tortured extrapolations from other research - and growing rich in the process. Ask yourself why he won't subject his witches brew to a proper peer-reviewed study - and indeed do so at his own expense, because why should valuable resources be diverted to disproving his crackpot theories?.

The placebo argument is a total red herring - he himself used a placebo group in this ludicrous 'study' of his - and he doesn't even need to use a placebo; because he can simply compare it to simple cheap multivitamins and a few generic supplements. Also, it is not unethical to use placebo groups where it isn't a matter of life and death .. and not even you have the gall to make the case that K-PAX is a matter of life or death.

The answer is simple: he wouldn't stand to gain financially if people saw that K-PAX offers them nothing at all that can't be easily achieved at a very small percentage of the cost, and without scatter-gun megadosing at, yes indeed, up to several hundred times the recommended safe limits.

The whole basis of your argument is that it must be fine if no-one has bothered to prove his specific claims wrong. Keep following that if you like; meanwhile, I am sure that most people will settle for avoiding what is the patent irresponsible stupidity of megadosing.
« Last Edit: June 29, 2009, 03:33:28 PM by Luke »

Offline madbrain

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Re: K PAX immune support
« Reply #17 on: June 29, 2009, 03:20:36 PM »
Madbrain, I've never in my life read anything more twisted, desperate, uninformed and totally irresponsible.

What a great argument.

Offline madbrain

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Re: K PAX immune support
« Reply #18 on: June 29, 2009, 03:38:35 PM »
I know no such thing, because it is just plain wrong and a figment of your imagination. If excess vitamin B is harmlessly passed in the urine, how come then that there are so many well documented conditions resulting from vitamin B toxicity? Maybe it is time you stop making wholesale quotes from the bizarre drivel they include in the K-PAX promotional.

I never cared about the K-PAX promotional. If you want to make an argument about vitamin B toxicity in K-PAX, you should look at doses at which this was reported to happen. Then compare them to the doses in K-PAX. Then report back.

Quote
Ask yourself why he won't subject his witches brew to a proper peer-reviewed study - and indeed do so at his own expense, because why should valuable resources be diverted to disproving his crackpot theories?.

Anyone else is free to do additional research on supplements, including on K-PAX. I would welcome it. But the funding for it is very scarce. There is no point in using name calling here, I don't think it is helpful.

Quote
The placebo argument is a total red herring - he himself used a placebo group in this ludicrous 'study' of his - and he doesn't even need to use a placebo; because he can simply compare it to simple cheap multivitamins and a few generic supplements. Also, it is not unethical to use placebo groups where it isn't a matter of life and death .. and not even you have the gall to make the case that K-PAX is a matter of life or death.

It wasn't a placebo group since one group had patients on HAART, and another group on HAART + KPAX. But yes, he could have compared the efficacy against HAART + other supplements. That would be very useful data to have. I haven't seen any life or death claims made about K-PAX. I just went to the K-PAX web site to check and it talks about immune system enhancement.

Quote
The answer is simple: he wouldn't stand to gain financially if people saw that K-PAX offers them nothing at all that can't be easily achieved at a very small percentage of the cost, and without scatter-gun megadosing at, yes indeed, up to several hundred times the recommended safe limits.

If you want to continue making the argument that K-PAX is mega-dosing and is above safe limits, then I think you should cite some nutrient levels in K-PAX and which one exceed upper tolerable intake levels for them, or studies of toxicity reported at those levels.

Quote
The whole basis of your argument is that it must be fine if no-one has bothered to prove his specific claims wrong. Keep following that if you like; meanwhile, I am sure that most people will settle for avoiding what is the patent irresponsible stupidity of megadosing.

No, that's not the whole of it at all. I have spent dozens of hours researching nearly every nutrient that is in K-PAX when I built my K-PAX clone. I did not check just a single source of information. I could not find any evidence that it is irresponsible. And other than for the B vitamins, which can also be found in similar levels in other high-end multivitamins, I don't think anything in K-PAX can be called megadosing. It is just a lot of nutrients put together, at levels high enough to have been previously shown to be of therapeutic value.

Offline Luke

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Re: K PAX immune support
« Reply #19 on: June 29, 2009, 03:55:13 PM »
I never cared about the K-PAX promotional. If you want to make an argument about vitamin B toxicity in K-PAX, you should look at doses at which this was reported to happen. Then compare them to the doses in K-PAX. Then report back.

Then why do you keep quoting the K-Pax promotionals almost word-for-word? And if you care to check, the long-term vitamin B6 toxicities - including peripheral neuropathy - are documented at lower levels than the doses Kaiser used in his own study formulation.

Quote
There is no point in using name calling here, I don't think it is helpful.

And you really don't think that you deliberately and systematically misrepresenting what people say, and their knowledge and beliefs, is tantamount to exactly the same?

Quote
It wasn't a placebo group since one group had patients on HAART, and another group on HAART + KPAX. But yes, he could have compared the efficacy against HAART + other supplements. That would be very useful data to have. I haven't seen any life or death claims made about K-PAX. I just went to the K-PAX web site to check and it talks about immune system enhancement.

Of course it was a placebo. One group was on HAART + K-PAX and the other group was on HAART + a placebo. Maybe it is you who should recheck your dubious sources.

Quote
If you want to continue making the argument that K-PAX is mega-dosing and is above safe limits, then I think you should cite some nutrient levels in K-PAX and which one exceed upper tolerable intake levels for them, or studies of toxicity reported at those levels.

And if you want to continue it, then perhaps it would behove you to stick to facts.

Quote
No, that's not the whole of it at all. I have spent dozens of hours researching nearly every nutrient that is in K-PAX when I built my K-PAX clone. I did not check just a single source of information. I could not find any evidence that it is irresponsible. And other than for the B vitamins, which can also be found in similar levels in other high-end multivitamins, I don't think anything in K-PAX can be called megadosing. It is just a lot of nutrients put together, at levels high enough to have been previously shown to be of therapeutic value.

Well, megadosing has a clearly defined meaning and it is certainly more than just vitamin B6 that is megadosed. If you want to redefine it for your purposes, then that is up to you; but there are endless studies and statistics out there to show the very real dangers of megadosing at the levels at which it is defined.
« Last Edit: June 29, 2009, 05:45:17 PM by Luke »

Offline risred1

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Re: K PAX immune support
« Reply #20 on: June 29, 2009, 04:10:12 PM »
Luke, one thing I understand about supplements is that they often rely on anecdotal evidence, or ancillary studies from which we draw our own conclusions.

Focusing exclusively on CD4 and VL is a losing game when it comes to Supplements.

And fundamentally, I agree that "mega dosing" is of dubious use.

For example, mega dosing C and E have been largely discredited. Although if i get a canker sore, I will take 500mg of C 3 times a day to reduce the pain.

But I believe there is another side to supplements that need to be considered. Individually for individual issues.

You pretty much do need to one by one and not lump supplements and "throw them under the bus" so to speak, and in my opinion.

I see HIV infection as a multifaceted problem where it isn't solely about HIV and CD4 interaction. But the side effects of the infection that supplements can provide some relief, for some people.

Metabolic, Inflammatory, Neurological, Digestive are noted side effects of HIV infection alone.

I'll point to specifics in regard to my HIV infection. And as you can see, I'm now on meds for a month.

I was able to go 5 years before going on meds. Nothing remarkable there. But for about 4 years, I maintained an equilibrium with my HIV. Which isn't uncommon, however, I performed better than my doctor expected based upon my initial numbers. He even said to me, whatever your doing, keep it up and understood and added to my file what I was taking.

But in the end, no supplementation program is going to stop HIV. And in my case, I can't really claim that supplements helped me maintain my equilibrium. It was entirely a stalling tactic in my thought process.

But where supplements did make a difference was Digestive and Metabolically. HIV impacted my digestive function fairly significantly. After I began supplementation with glutamine and pro-biotics, my function improved significantly, and i even reach a never better state. But as my VL increased, the supplements only help to a point and digestive issues ultimately returned over the last 7 months prior to me going on meds.

I also had fatigue issues that increasing was effecting me. I cycled on and off of Ginseng and clearly there was a difference in my energy level on Ginseng vs. not.

I also took Alpha Lipoic Acid for my fatty liver condition, and for a time, my elevated liver counts went to zero. But slowly returned. Which probably has much to do with the extra weight I'm carrying, which was difficult for me to control because of fatigue. but for a while, I got some results.

I agree that the problem often is, lack of information. But if your having issues, then what choices do we have and can these things help?

Not everything needs to come from the doctor in a prescription for it to be effective. Ginger is a great anti-nausea agent and you can get them in freeze dried form in capsules. Does that make it a supplement?

I'll let others decide if K-PAX is a shame or not. But I simply do not discount supplements, because my experience says that they can play a role in how we try to manage HIV's effects.

 








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 Luke

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Re: K PAX immune support
« Reply #21 on: June 29, 2009, 04:22:33 PM »
You pretty much do need to one by one and not lump supplements and "throw them under the bus" so to speak, and in my opinion.

I totally agree. I am absolutely not arguing against carefully targeted and informed supplementation - I use them myself. I am arguing against the sort of irresponsible and unsupervised scatter-gun supplementation advocated by Kaiser.

Offline risred1

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Re: K PAX immune support
« Reply #22 on: June 29, 2009, 04:54:51 PM »
I did read his book from the 90's absurdly called, healing HIV.

my opinion was, if the book was correct about his practice, he would try anything to keep his patients alive, and developed these techniques as part of his practice. He wasn't against meds, but doing everything you can from stress reduction, acceptance therapy, and supplements to attempt to maintain control.

He also was a bit advocate to regular intestinal parasitic screening which is clearly outside of conventional thinking, but after I had Blasto Hominus, got just an inkling how much more severe these "typical" conditions can be if your HIV positive. Fortunately, the lab i used was able to detect the parasite and the treatment worked.

i don't know much more about Kaiser than from the book he wrote. But much of what he advocates for dealing with HIV issues, such as the glutamine, Acetyl L Carnitine, Alpha Lipoic acid, NAC are staples in most HIV supplementation routines.

Yes its scatter shot in a combo, but as folks who take Atripla note, taking one thing that has all the things in it, may be simpler than trying to figure it out. Its also more expensive for certain.

I now don't really know what to make of Kaiser. He seems to stimulate devotion and ridicule simultaneously. I don't think he's a quack, but he certainly has done thing differently than others.

I would say, folks that have used his practice, what did they think of his approach? And of course we need to realize that much of this was developed in the 90's, so it is a bit backward looking.

Overall that is a problem with HIV therapy, we tend to look at things from a historical perspective. And we wait what seems like forever for results from studies. It may be the best drug ever, but until we go through long term use studies, the advice is to use the current drugs that have been studied for a long time.

When Reyataz showed up, Kaletra was so strong that even my doc said, wait and see. Part of my waiting was to hold off long as possible before going on meds, and now I'm on Reyataz. I probably could have started sooner and avoided 6 months of feeling like crap. But that is the nature of the beast.

We have to decide what we are going to do, what role to play, and what resources we want to expend. Much of it is on us as individuals. Madbrain's  thoughts as my own, our our own individual attempts to see what we can do to attempt to control this thing. I was a big time advocate of supplements in the past, but I now accept that as hopeful thinking. But a part of living with HIV is being hopeful. And we all need our own devices in determining what gives us hope.

At least I was in a pill taking routine for 5 years, and still continuing. Because of my routine, my doc, who normally recommends Atripla, knew that I can take 3 pills a day in the morning like clock work. For folks having trouble taking pills, taking supplements and getting used to it and finding a way, may have some ancillary benefit down the road when it comes time to take meds every day.






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 Luke

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Re: K PAX immune support
« Reply #23 on: June 29, 2009, 05:06:16 PM »
But much of what he advocates for dealing with HIV issues, such as the glutamine, Acetyl L Carnitine, Alpha Lipoic acid, NAC are staples in most HIV supplementation routines.

I disagree. Almost everyone I know takes some sort of supplement, but I don't actually know anyone for whom all those four are staples. I also don't know anyone who would routinely take them at anywhere near the doses advocated by Kaiser. I can't speak for the USA, so maybe it is a cultural difference.

I do however know that my clinic routinely prescribes some of them to good effect, at significantly lower doses than in K-PAX, where there is an identified need - in particular where a patient suffers from peripheral neuropathy.

Offline risred1

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Re: K PAX immune support
« Reply #24 on: June 29, 2009, 05:25:33 PM »
Probably a bad use of words on my part. "Staple".

It certainly is a part of mine, and I take 400mg alpha lipoic and 1000mg NAC in time release,  and 1000  mg of Acetyl L Carnitine Daily.

Not the full 600mg 1500mg and 1500mg advocated by some.
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 madbrain

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Re: K PAX immune support
« Reply #25 on: June 29, 2009, 06:22:43 PM »
Luke,

Then why do you keep quoting the K-Pax promotionals almost word-for-word?

I did no such thing.

Quote
And if you care to check, the long-term vitamin B6 toxicities - including peripheral neuropathy - are documented at lower levels than the doses Kaiser used in his own study formulation.

Yes, I have checked. That is the one thing I take exception to in K-PAX, and that's why I take slightly less B6 than is in K-PAX in my clone (75 vs 100mg).

Quote
And you really don't think that you deliberately and systematically misrepresenting what people say, and their knowledge and beliefs, is tantamount to exactly the same?

I haven't done any such thing.

Quote
Of course it was a placebo. One group was on HAART + K-PAX and the other group was on HAART + a placebo. Maybe it is you who should recheck your dubious sources.

In other words, there was no group that was on a placebo alone.

Quote
And if you want to continue it, then perhaps it would behove you to stick to facts.

That is a really interesting comment coming from you, since most of your posts include very few facts, they are full of personal attacks, against Kaiser, the price of K-PAX, or anyone who takes supplements.

Quote
Well, megadosing has a clearly defined meaning and it is certainly more than just vitamin B6 that is megadosed. If you want to redefine it for your purposes, then that is up to you; but there are endless studies and statistics out there to show the very real dangers of megadosing at the levels at which it is defined.

If it is more than B6 that is megadosed, and it is dangerous, please enlighten us with facts about it. I certainly would like to know since I take a combo similar to K-PAX. This is another example of a factless post from you.

Offline Luke

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Re: K PAX immune support
« Reply #26 on: June 30, 2009, 02:43:17 AM »
I did no such thing.

Then you clearly aren't even aware of the contents of your own posts.

Quote
Yes, I have checked. That is the one thing I take exception to in K-PAX, and that's why I take slightly less B6 than is in K-PAX in my clone (75 vs 100mg).

Oh, so now your story changes and you have all along taken exception to the one thing which only a few posts ago you were telling us was so harmless that any excess would just pass harmlessly out in urine. Pardon me for laughing whilst I watch you dig this rather large hole for yourself.

Quote
I haven't done any such thing.

I repeat: Then you clearly aren't even aware of the contents of your own posts.

Quote
In other words, there was no group that was on a placebo alone.

In other words there was a placebo group - by every definition of the meaning of a placebo group and even Kaiser refers to it as such - only you can't admit it, because that would make you wrong ... again. If you are testing the benefits in treating people with peripheral neuropathy caused by their meds (which is the only benefit that Kaiser has ever managed to demonstrate) then of course the placebo group needs to be on meds. As for the people who aren't yet requiring meds, there simply is no ethical dilemma.

Quote
That is a really interesting comment coming from you, since most of your posts include very few facts, they are full of personal attacks, against Kaiser, the price of K-PAX, or anyone who takes supplements.

Really? That is just a blatant lie. Yes I have certainly made comments about Kaiser and the extortionate and quite unjustifiable cost of his witches brew; but show me anywhere that I have attacked people who take supplements. As I have made very clear on this thread, I don't have an issue with sensible and targeted supplementation. The fact that you have to lie repeatedly, and so blatantly, shows just how desperate you are.

Quote
If it is more than B6 that is megadosed, and it is dangerous, please enlighten us with facts about it. I certainly would like to know since I take a combo similar to K-PAX. This is another example of a factless post from you.

Well, just one single example is vitamin B12. Thiamine is another (and before you desperately try to claim that they aren't also dangerous, try thrombosis and anaphylaxis for size). The list goes on. So the fact that you claim that there aren't others (having previously claimed that there were none at all) just shows that it is you, not I, who is factless in their posts - in fact, I doubt you even know the meaning of the word 'fact' - so, as I have clearly demonstrated that you are singularly unable to stick to any of these elusive facts, there is therefore little point in continuing this.

It seems that your idea of making a point is to indiscriminately spray as many non-facts around as Kasier would have us consume needless vitamins, and then desperately cling to the hope that one of them may actually turn out to be a fact. Perhaps this is an illustration of what megadosing does to your faculties.
« Last Edit: June 30, 2009, 04:11:38 AM by Luke »

Offline madbrain

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Re: K PAX immune support
« Reply #27 on: June 30, 2009, 04:12:19 AM »
Luke,

Then you clearly aren't even aware of the contents of your own posts.

I think you are so blinded by your beliefs that you are reading things in my post that I just didn't write.

Quote
Oh, so now your story changes and you have all along taken exception to the one thing which only a few posts ago you were telling us was so harmless that any excess would just pass harmlessly out in urine. Pardon me for laughing whilst I watch you dig this rather large hole for yourself.

My storing is not changing - my supplement regimen has been available publicly for a long time and you can see the B6 dosing in it at links I previously posted, and how it differs from K-PAX slightly (it is less). And I have even discussed the B6 issue previously if you care to search the forum or use google.

Quote
In other words there was a placebo group - by every definition of the meaning of a placebo group and even Kaiser refers to it as such - only you can't admit it, because that would make you wrong ... again.

You are a real piece of work ! You would do well to start reading the posts before you reply to them. I suggest you go back to my first response and see what I quoted and responded to.

You made an argument that just because there was a trial of K-PAX in people on HAART that showed some benefit, it didn't mean K-PAX was also beneficial in people not on HAART.

In principle I agree with that. It's a different population, and it would require a different trial to get conclusive evidence.

I then pointed out that there could be no placebo-controlled trial of K-PAX in that other population for ethical reasons.

As far as "By every definition of the meaning of a placebo group", the population is part of the definition of the trial. You can't talk about the placebo group without defining the population.

Kaiser writes about a placebo group in his trial of KPAX, which is in the population of people that were all on HAART.

He does not write about a placebo group in a population of people not on HAART, simply because there wasn't any such trial.

The only person to mention K-PAX as life-or-death was you. The life-or-death issue is with performing trials on HIV-positive people that are purposedly kept off life-saving HAART, that is the ethical issue I was referring to. But you proceeded to put words in my mouth.

Since there is no trial of K-PAX in people not on HAART, and there is never going to be any for ethical reason, we have to rely on other related research to help figure out whether K-PAX might also be helpful in that population.

Quote
The fact that you have to lie repeatedly, and so blatantly, shows just how desperate you are.

More personal attacks. What would I need to be desperate about ? I'm glad the supplement company paid for Kaiser's research. Now I get to benefit from it, without having paid to pay the high cost, by using a similar, cheaper supplement regimen.

Quote
Well, just one single example is vitamin B12. Thiamine is another. And the list goes on.

So what's the issue with the amount of B12 in K-PAX ?
From http://ods.od.nih.gov/factsheets/VitaminB12.asp

What is the health risk of too much vitamin B12?
The Institute of Medicine of the National Academies did not establish a UL for this vitamin because vitamin B12 has a very low potential for toxicity. The IOM states that "no adverse effects have been associated with excess vitamin B12 intake from food and supplements in healthy individuals" [7]. In fact, the IOM recommends that adults older than 50 years get most of their vitamin B12 from vitamin supplements or fortified food because of the high incidence of impaired absorption in this age group of vitamin B12 from foods that come from animals [7].

And since you cited it, same question for thiamine.

Same question for "the list goes on". I didn't see that one anywhere on the K-PAX fact sheet, though.

Quote
So the fact that you claim that there aren't others just shows that it is you, not I, who is factless in their posts - in fact, I doubt you even know the meaning of the word 'fact' - so, as I have clearly demonstrated that you are singularly unable to stick to any of these elusive facts,

More personal attacks. It's clear you don't have anything useful to say in this discussion other than to bash Kaiser, complain about his overpriced formula, and make repeated claims about its dangers, without substantiating them.

Quote
there is therefore little point in continuing this.

On this part, I fully agree with you. If you had anything factual or of substance to say, you would have been able to state it by now, and also do it in a civil way. You have the honors of being only the second person to make it to my ignore list. Life is too short to waste responding to twits like you.

Offline Luke

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Re: K PAX immune support
« Reply #28 on: June 30, 2009, 04:30:21 AM »
Madbrain,

As for B12, even K-PAX on their own packages here in the UK, show the percentage against recommended intake - and it is over 10,000%, which is pretty spectacular for something which you claim isn't even megadosed - and I have already given thrombosis as an example of the result of B12 toxicity, so I really shouldn't even need to have to repeat myself. Same goes for thiamine and anaphylaxis. If you don't consider them to be dangerous, then there really is little hope for mankind. Rare toxicities they may be, but they are none-the-less very real in people with chronic conditions (I take it you do realise that you are talking to people with HIV and that HIV is a chronic condition).

Don't forget that this is in addition to the B6; which we have now established can cause peripheral neuropathy - but only after you had quite irresponsibly claimed that it was harmless and that any excess would simply be harmlessly passed in urine. Yet it turns out that you are worried enough about it to decrease your own intake whilst telling others that it is harmless (but that's OK, because you disingenuously tell us that anyone reading this would know that, because it is hidden away somewhere amongst the rest of the copious nonsense you have posted on the subject in the past).

As for the rest of the drivel - not only are you misrepresenting my own posts, but you are denying what you have posted in this very thread - all I can say is that you are seriously deluded and that I am done with this ridiculous circular nonsense.

Madbrain by name and madbrain by nature. Have fun, because you wouldn't know a fact (let alone a twit) if it stood up and smacked you in the face.
« Last Edit: June 30, 2009, 05:41:14 AM by Luke »

Offline madbrain

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Re: K PAX immune support
« Reply #29 on: June 30, 2009, 04:32:29 AM »
risred1,

Appreciate you stepping in.

I was able to go 5 years before going on meds. Nothing remarkable there.

Yes, that's about average.

Quote
But for about 4 years, I maintained an equilibrium with my HIV. Which isn't uncommon, however, I performed better than my doctor expected based upon my initial numbers. He even said to me, whatever your doing, keep it up and understood and added to my file what I was taking.

To me, it's clear that HIV behaves differently in different people. Even the same HIV behaves very differently in me as it does in my bf. He went on meds 2 years ago, and I still don't need it. There are some genetic factors in play. Scientists have not identified most of them yet, unfortunately.

Even though you ended up with some average time to meds, how can you know how you would have done without the supplements ? Your HIV progressed, at a certain average rate. But perhaps it would also have progressed even faster without the supplements. You might have needed meds less than 12 months after your last HIV negative test like my bf did.

Quote
But in the end, no supplementation program is going to stop HIV.

Probably not - at least, no supplementation program that anyone has ever come up with and studied yet.

Quote
I agree that the problem often is, lack of information.

Yes, unfortunately the available research is insufficient when it comes to supplements.

Quote
But if your having issues, then what choices do we have and can these things help?

Exactly. I have always had serious GI issues too, and the supplements I take have clearly helped. That's a lot easier to measure than the effect of HIV on CD4 and VL which are much less visible except in the labs every 3 months, at least for me so far.

Offline Merlin

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Re: K PAX immune support
« Reply #30 on: June 30, 2009, 05:29:31 AM »
Supplement overdose=irritable aggression=must have the last word in= ;D :D ;)
(Trust me, mine won't be the last post here.) :-X
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Offline Ann

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Re: K PAX immune support
« Reply #31 on: June 30, 2009, 05:41:43 AM »
Madbrain, Luke, you two need to stop this pissing contest right now. Enough is enough. Either agree to disagree - or ignore each other. And yes, this is a warning. Stop it.

Out of the eight B vitamins, only three of them have any recorded toxicities.

Vitamin B3    niacin - recommended intake, no more than 35 mg/day from supplements, drugs or fortified food. Harmful effects may include: Flushing (redness of the skin, often accompanied by itching or a mild burning sensation). Intake of 3000 mg/day of nicotinamide and 1500 mg/day of nicotinic acid are associated with nausea, vomiting, and signs and symptoms of liver toxicity.

Vitamin B6 pyridoxine - recommended intake, no more than 100 mg/day from supplements, drugs or fortified food. Harmful effects may include: sensory neuropathy and dermatological lesions.

Vitamin B9  folic acid - recommended intake, no more than 1 mg/day. Harmful effects: Masks B12 deficiency, which can lead to permanent neurological damage.

None of the other B vitamins have upper limits and none of the others have any known toxicities. B vitamins are water soluable and the worst effect most of them have is they make your piss very expensive. That's it, other than the three listed above.

This information is from the USDA. SOURCE

Ann
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Offline risred1

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Re: K PAX immune support
« Reply #32 on: June 30, 2009, 11:23:13 PM »
My take on vitamin toxicity....

If Luke is having issues, then his speaking from experience is of value to us in learning more about this possibility.

But, I would also comment that I've pretty much taken the K-PAX formula, via selecting individual components myself, which often leads to taking up to 40 supplement tabs and caps a day.

My doctor nor did I suspect at any time that I was having a vitamin/supplement toxicity issue.

Now that I'm on meds, I've altered my supplementation to eliminate Herbal Supplements, and pulled it back to a Multi without Iron with Selenium, Alpha Lipoic Acid, NAC and Acetyl L Carnintine, 100 mg of 7-Keto DHEA, and Vitamin D supplement based upon how much sun I'm getting, Glutamine and Psyllium Fiber.

My blood work didn't indicate issues either and honestly, I thought the level of what i was taking is Generally Regarded as Safe.

I'm also a 215lb man at 5'8", short and husky, but with enough muscle to go on long bike rides, lift wieghts, etc.

Just like everything, one size does not fit all, but we are often living in guidelines that are one size fits all.

Madbrain has terrible issues with Vitamin D deficiency. Luke has toxicity issues. That about says it all.

From my point of view, guidelines are conservative, minimal, well researched and meaningful. But we are all different.

I know for years I've had increasing trouble during the winter months. Tried Light Therapy and Zoloft with minimal relief. Then I just increased my Vitamin D supplementation from 400 i.u, to 1200 i.u. That was the thing I needed.

My mom scoffs at what I'm taking, insisting that she takes 2000 i.u. a day. she's in her 70's. And lives in Arizona. She might be overdoing it, but not a whisper of Osteoporosis.

Oh, and she's 5'3" and 120 lbs.

Wise or not.... these are the choices we make.

 
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

 


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