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Author Topic: Icrease in immunity - Other medicine?  (Read 11630 times)

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Offline hope4love

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Icrease in immunity - Other medicine?
« on: February 26, 2010, 12:40:22 PM »
Can any suggest if their CD4 count increased by eating a particular food, vegetable, herb etc
is their any way where we can improve our immunity naturally by consuming certain food, oil extracts etc. My be Ayurvedic/Homeopathic/Unani medicine etc? any information?

SM
Jan 2009 - Sero Negative
Jan 2010 - Sero Positive
               CD4 - 275, VL - 18,000
Oct 2010 - CD4 - 241, Started - Vonavir; Oct 2011 - CD4 - 474;Jan 2012 - CD4-620; Aug 2012-CD4-600, VL- UD; Jan 2013 CD4-493, VL-72 IU/ml   (Blip)

Offline BT65

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Re: Icrease in immunity - Other medicine?
« Reply #1 on: February 26, 2010, 04:14:50 PM »
Can any suggest if their CD4 count increased by eating a particular food, vegetable, herb etc
is their any way where we can improve our immunity naturally by consuming certain food, oil extracts etc. My be Ayurvedic/Homeopathic/Unani medicine etc? any information?

SM

That may be best answered by people I used to know, who had Aids, and tried to save themselves via naturopathic, homeopathic, etc. etc. who died, back in the day I mean.
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: Icrease in immunity - Other medicine?
« Reply #2 on: February 26, 2010, 05:28:56 PM »
Hope,

From an orthodox medical perspective there's not really anything you can do to "increase" your immunity.  In terms of HIV, all you can do is supress the virus and your immune system should return to some form of normal function over time. Provided the virus remains suppressed. Only western medicine provides treatments which produce effective viral suppression.

There is no compelling evidence that demonstrates the efficacy of any of the alternative methods you refer to. Nevertheless I note that ayurveda has a strong following in India and many of the herbal remedies used in that tradition are of interest to orthodox western medicine.

Homeopathy is a different matter. It is pseudo-scientific nonsense. Don't waste your time or money seeing the scoundrels involved in homeopathy.

Unani medicine is based on Galenic principles which we now know to be nonsense as well.

MtD

Offline mecch

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Re: Icrease in immunity - Other medicine?
« Reply #3 on: February 26, 2010, 07:25:32 PM »
There certainly are diets and supplements that can make you "healthier" and its worth pursuing. But its not a replacement for medical care.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Nestor

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Re: Icrease in immunity - Other medicine?
« Reply #4 on: February 26, 2010, 08:34:40 PM »

Hi Hope,

I've heard claims for bitter melon, barley, shiitake mushrooms, reishi mushrooms, coconut oil, garlic, green tea, colostrum, turmeric, astragalus, pickled ume plums, and a few other things.  I have incorporated most of them into my diet to some degree.  Bitter melon, not much; it simply isn't something that would be realistic to eat in large quantities.  Green tea I've drunk regularly for many years, since before HIV, so I simply continued as before.  Colostrum, I get a quart from the dairy farm once in a while, especially in spring.  Coconut oil intensely, at various times, and then I'll get tired of it and forget about it for a while.  Barley, shiitake mushrooms, and garlic have become quite regular components of my diet, but probably not in the kind of quantities that would realistically make a difference even if they did have some capacity. 

I have no idea whether any of these things is doing anything against HIV at all.  I certainly wouldn't make a claim based on my own experience.  My t-cells and vl are neither notably good enough for me to say "something must be doing something" nor bad enough for me to say "obviously, none of these things does anything." 

My criterion in trying something is basically this: it should be something that I would do, to some degree, even without HIV.  That is, it should be a basically good thing in itself.  Eating barley on a regular basis, or garlic, would be a basically good thing even if it does nothing against HIV, so at least I'm not losing anything.  Nor do these things put a strain on the budget.  Now, if someone were to propose something of which I hated the taste, or which seemed as if it might be dangerous, or that cost huge amounts of money, I would demand much more solid arguments before I tried it. 

A test would be this: in the three-month period before the next set of labs, I would consume lots of several of these things.  Then, in the three-month period before the set of labs after that, I would strictly avoid all of them.  I would repeat the process several times.  If, over time, the periods when I was consuming the allegedly HIV-fighting foods consistently resulted in numbers that were significantly better than in the periods of abstention, I would then feel prepared to offer my own experience as an argument.  I have already tried this sort of thing to a limited degree; there were a couple of times when a bout of particularly enthusiastic coconut-oil and mushroom consumption was followed by a rather high t-cell count; it is also true that just before I began these "experiments" I had two quite high vls which, as you see, have never returned since I began them.  However I have not done any of this with anything like the discipline or the consistency which would be necessary to make a serious claim on the basis of my own experience. 

I would be very interested to hear whether anyone else making these kinds of trials has observed any kind of effect on t-cell count, vl, or quality of life. 

And by the way, the fact that people tried many kinds of natural remedies and still, tragically, died of AIDS proves only that these remedies are not cures.  I do not think any serious person is claiming that any of these things is a cure.  Most of those of us who are trying them are hoping for something far more modest--perhaps delaying meds for a few years while we are still not on them; having better success with meds, and fewer side effects, after we are on them; and better overall health in general. 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline hope4love

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Re: Icrease in immunity - Other medicine?
« Reply #5 on: February 27, 2010, 01:24:17 PM »
thank you all for the reply . I did hear in Ayurveda that turmeric, garlic improves immunity and Nestor too mentioned along with other things. It's good to incorporate this in our Diet we dont loose anything it might work or may not work but we are having healthy food and drinks. This was useful. Thanks.
Jan 2009 - Sero Negative
Jan 2010 - Sero Positive
               CD4 - 275, VL - 18,000
Oct 2010 - CD4 - 241, Started - Vonavir; Oct 2011 - CD4 - 474;Jan 2012 - CD4-620; Aug 2012-CD4-600, VL- UD; Jan 2013 CD4-493, VL-72 IU/ml   (Blip)

Offline john33

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Re: Icrease in immunity - Other medicine?
« Reply #6 on: February 27, 2010, 02:37:10 PM »
Hope,

as mentioned by the more experienced members, (new to this myself)
just remember these are no replacement for medical care

John

Offline thom k

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Re: Icrease in immunity - Other medicine?
« Reply #7 on: March 01, 2010, 04:30:42 PM »
Hi Hope,

You might find this CATIE links on "Herbal Therapies for people living with HIV" and "A Practical Guide to Complementary Therapies for People Living with HIV" useful:

http://www.catie.ca/herb_e.nsf/TOC/24B449840467ADBD85256E620057C912?OpenDocument

http://www.catie.ca/comp_e.nsf

The second link has specific write ups on Ayurvedic, Homeopathy, Naturopathy and Traditional Chinese Medicine.

You can navigate to other pages about Nutrition and Hiv also.  
« Last Edit: March 01, 2010, 04:34:35 PM by thom k »

Offline Matty the Damned

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Re: Icrease in immunity - Other medicine?
« Reply #8 on: March 01, 2010, 04:43:37 PM »
Hi Hope,

You might find this CATIE links on "Herbal Therapies for people living with HIV" and "A Practical Guide to Complementary Therapies for People Living with HIV" useful:

http://www.catie.ca/herb_e.nsf/TOC/24B449840467ADBD85256E620057C912?OpenDocument

http://www.catie.ca/comp_e.nsf

The second link has specific write ups on Ayurvedic, Homeopathy, Naturopathy and Traditional Chinese Medicine.

You can navigate to other pages about Nutrition and Hiv also.   

Those pages indicate the information contained therein was last revised in 2004. This (amongst other things) leads me to question their usefulness.

MtD

Offline thom k

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Re: Icrease in immunity - Other medicine?
« Reply #9 on: March 01, 2010, 04:49:53 PM »
And I find this link also useful:

http://www.aidsinfonet.org/fact_sheets/view/900#3

You can find links to alternative therapies and nutrition.   

Offline Matty the Damned

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Re: Icrease in immunity - Other medicine?
« Reply #10 on: March 01, 2010, 04:55:42 PM »
And I find this link also useful:

http://www.aidsinfonet.org/fact_sheets/view/900#3

You can find links to alternative therapies and nutrition.   

Eh, again many outdated links and links to information of dubious validity.

MtD

Offline Nestor

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  • What we love, we shall grow to resemble.
Re: Icrease in immunity - Other medicine?
« Reply #11 on: March 02, 2010, 12:33:09 AM »

Thank you, Thom K, for this information!  I am looking forward to reading more in these links. 

MtD, you say:

Quote
Those pages indicate the information contained therein was last revised in 2004. This (amongst other things) leads me to question their usefulness.

Whether a date of 2004 renders information invalid or of limited usefulness depends on the nature of the information.  Has much changed since then?  I wouldn't get my information about the latest anti-retrovirals from something written in 2004.

But these links which Thom K has just given us contain basic, general, introductory descriptions of various herbal remedies most of which have been well known for a very long time.  The herbs have not changed their natures, and in most cases no new revelations about them have emerged that would call for revision of such a website. 

Suppose, for example, you want to know whether there is anything behind the claim that monolaurin--the active ingredient in coconut oil--does something against HIV.  The site says: 

Quote
Monolaurin is a form of the fatty acid called lauric acid, which is found in large quantities in coconut milk and human milk. Some fatty acids, including lauric acid, reportedly have anti-bacterial, anti-fungal and antiviral properties. In test-tube studies, monolaurin has been shown to have antiviral activity against a number of viruses, including influenza and herpes. It seems to work by disrupting the lipid envelope of these viruses. Limited test-tube data also suggest that lauric acid may increase the production of immune cells in the body. There have been no clinical studies of monolaurin in PHAs. Monolaurin comes in capsules, however, lauric acid can also be found in raw or processed coconut.

That's pretty much all there is to say.  As far as I know, it remains true that no clinical studies have been done.  Nothing in the above paragraph has been disproven, and no major monolaurin-related discoveries have taken place in the past six years--again as far as I know--that would need to be added to it. 

Similarly, of the famous ayurvedic formula triphala, it says:

Quote
Triphala is a combination of three fruits - haritaki, amalaki and bibhitaki - used in Ayurvedic medicine. It is used to help maintain a healthy digestive system. It improves digestion and appetite and works as a laxative. Triphala is a good example of an herbal formula that combines several herbs with similar properties that work together. Haritaki (Termina chebula) is used extensively in Tibetan medicine. It is the strongest laxative of the three and helps to prevent cramping. It may also be active against intestinal parasites. Amla, or amalaki (Emblica officinalis), is used to rejuvenate the digestive system and improve appetite and digestion. It contains large amounts of vitamin C (3,000 mg per fruit) and is said to rejuvenate the circulatory system, helping to rebuild new tissue and maintain the red blood cell count. Bibhitaki (Terminalia belerica) tones and protects the stomach and is also used as an appetite stimulant. Bibhitaki is also taken for sore throats and respiratory illnesses. Triphala or other formulas containing haritaki should not be used by pregnant women or when a person is experiencing fatigue, wasting or diarrhea.

Again, is the information here any less true today than it was six years ago? Has any major new information about triphala emerged?  If not, the information is not outdated. 

It should be noted that these websites seem to offer extremely basic introductions to what's out there.  The information is not, in itself, enough to base any decision on.  I would not decide to use or triphala, or not to use it, based on the above paragraph.  I would, however, find out that it exists, and what it's supposed to do; exploring further is now up to me. 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline Matty the Damned

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Re: Icrease in immunity - Other medicine?
« Reply #12 on: March 02, 2010, 12:40:40 AM »
Thank you, Thom K, for this information!  I am looking forward to reading more in these links. 

MtD, you say:

Whether a date of 2004 renders information invalid or of limited usefulness depends on the nature of the information.  Has much changed since then?  I wouldn't get my information about the latest anti-retrovirals from something written in 2004.

But these links which Thom K has just given us contain basic, general, introductory descriptions of various herbal remedies most of which have been well known for a very long time.  The herbs have not changed their natures, and in most cases no new revelations about them have emerged that would call for revision of such a website. 

Suppose, for example, you want to know whether there is anything behind the claim that monolaurin--the active ingredient in coconut oil--does something against HIV.  The site says: 

That's pretty much all there is to say.  As far as I know, it remains true that no clinical studies have been done.  Nothing in the above paragraph has been disproven, and no major monolaurin-related discoveries have taken place in the past six years--again as far as I know--that would need to be added to it. 


Indeed. I note that the links provided have not been revised in nearly six years and should be considered stale. There is more contemporaneous information available on this site, for example.

MtD

Offline BT65

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Re: Icrease in immunity - Other medicine?
« Reply #13 on: March 02, 2010, 05:40:07 PM »
Nestor, I will tell you that years ago, I used to have a shoebox full of vitamins and herbs, all of which were being touted at the time by the likes of Louise Hay, who made a lot of money off books like "love yourself, heal aids." 

I took the pills faithfully, and still got wasting, and my CD4's still went down to 2.  So, there you have it.  Organizations and individuals will make as much money as they can off whatever illness will buy into their b.s.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Okealyshire

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Re: Icrease in immunity - Other medicine?
« Reply #14 on: March 03, 2010, 03:25:30 AM »
Again, is the information here any less true today than it was six years ago? Has any major new information about triphala emerged?  If not, the information is not outdated. 

On the contrary: no new information has emerged because this compound has apparently shown zero effectiveness at reversing HIV. Were it to be effective, we'd encounter numerous articles referencing peer-reviewed research conducted independently by multiple professionals.

The human body is a wonderful regenerative machine; most simple ailments like indigestion, irregularity, and bruises cure themselves over time. Ayurvedic treatments, homeopathy, traditional Chinese medicine, and the rest were invented long before we discovered microbiology. The best that could be said about pre-scientific treatments is that they act as counter-irritants: religiously applying some herbal concoction to your sour stomach directs attention away from the nausea because the tingle and the odor of the herbs occupy most of your thoughts. Eventually the stomach settles, you stop applying the herbal stuff, and you assume it was the herbs that cured you -- when in fact it was simply a matter of time.

The blog Science-Based Medicine has had plenty to say about this for a while now.

Offline Nestor

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Re: Icrease in immunity - Other medicine?
« Reply #15 on: March 03, 2010, 07:00:30 AM »
Quote
On the contrary: no new information has emerged because this compound has apparently shown zero effectiveness at reversing HIV.  Were it to be effective, we'd encounter numerous articles referencing peer-reviewed research conducted independently by multiple professionals.

That may very well be (I happen to suspect that there may be other possibilities) but what you write is not at all "on the contrary" to what I wrote.  For one thing, while I happen to disagree with you profoundly, at least about TCM, in what you quote above I was not taking up the cause of any particular remedy, or even of the website in general.  I was only pointing out that the "it's outdated" argument with which MtD tried to dismiss that website (not the remedies which that website rather neutrally describes) would only have been a valid or reasonable one if new information had come along which had fundamentally changed what we know (or don't know) about those remedies.  To the extent that they have not, the website is as good a general introduction to what's out there as it was six years ago. 

There may be many reasonable arguments against the website, but "it's outdated" is not one of them. 

Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline Matty the Damned

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Re: Icrease in immunity - Other medicine?
« Reply #16 on: March 03, 2010, 07:02:47 AM »
That may very well be (I happen to suspect that there may be other possibilities) but what you write is not at all "on the contrary" to what I wrote.  For one thing, while I happen to disagree with you profoundly, at least about TCM, in what you quote above I was not taking up the cause of any particular remedy, or even of the website in general.  I was only pointing out that the "it's outdated" argument with which MtD tried to dismiss that website (not the remedies which that website rather neutrally describes) would only have been a valid or reasonable one if new information had come along which had fundamentally changed what we know (or don't know) about those remedies.  To the extent that they have not, the website is as good a general introduction to what's out there as it was six years ago. 

There may be many reasonable arguments against the website, but "it's outdated" is not one of them. 



I did not dismiss the entire website(s) Thom provided, merely the information on the pages linked to.

And yes, I consider TCM to be an enormous load of vitalist horse shit.

MtD

Offline Jeton

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Re: Icrease in immunity - Other medicine?
« Reply #17 on: March 03, 2010, 10:04:08 AM »
the KPAX website (i take their powder by rx, 2 scoops 2x day) has a well-footnoted page on nutrition n hiv. they don''t mention iron tho, n many poz ppl r deficient in that as well, due to varying mechanisms.

http://www.kpaxpharm.com/medical-conditions/hiv_aids_nutrition_medication_side_effects

Offline Jeton

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Re: Icrease in immunity - Other medicine?
« Reply #18 on: March 03, 2010, 10:13:02 AM »
also, Geron Corporation has been working on an astragalus derivative called TAT2, which is supposed to increase telomere-length n result in an immune response similar to that seen in some prostitutes along the Kinshasa highway, who were demonstrated to have "killer cd8" cells that are far more active against HIV. i haven't tried the herb myself after reading of this a year ago, but i've never heard of a contraindication for HAART patients against using astragalus...unlike echinacea, for instance.

http://www.natap.org/2009/HIV/060209_01.htm

 

Offline risred1

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Re: Icrease in immunity - Other medicine?
« Reply #19 on: March 03, 2010, 10:19:18 AM »
As a person who has used supplements before having to go on meds, and continues to do so....

Nothing replaces the "value" of a good diet. However, no matter what supplements or diet you use, HIV mostly likely will require treatment. There are a few who can "control" hiv, but they are a very small exception. And probably has very little to do with Diet and Supplements. Either their body has the genetic ability to handle HIV or not.

There is no Magic Food or Supplement out there to manage HIV. PERIOD! No article, no website, no book has the answer. They will often promote their own products. Which means the information they provided should be looked at with a questioning eye by us.

Every few months, we are going to hear about what I will call the "supplement" of the month. Some anti aging miracle compound that is going to make up for all the deficiencies.... don't fall for it. What you're looking at and quoting from is probably marketing materials. Like a cure for Baldness or small penis. Again, don't start "believing" something because it sounds good.

What does make sense to me is being tested for deficiencies. If you have low levels of Vitamin D, for example, that is something you can easily and inexpensively correct, perhaps as easily as getting more sun. B levels, other potential deficiencies... whatever. A good diet can cover many of these things, but sometimes we have issues that require further steps.

Secondly, if your HIV positive, I believe we need to stop looking at studies that depict, "normal" people. By normal, those who are HIV negative. We are no longer in that world. Looking at information about those not dealing with a chronic infection, simply doesn't apply to us. The way HIV affects us is its own thing....

We do know that HIV affects a good number of body systems. Metabolic, Vascular, Hepatic, Renal, Digestive as well as obviously the immune system. Lots of folks have to find a way to deal with these side effects of the infection. Dealing with Side effects is just that. It is largely about mitigation.

Mitigation isn't going to stop HIV. For me, its about improving quality of life. If HIV caused diarrhea is an issue, there are a number of ways to address that. Fatigue, there are things that might help. And so forth.

Ultimately, my view is that one should pay attention to the treatment guidelines that have been published and adhere to them. Be it a CD4 count of 350 or 500 as the line, or a VL about 100k. That's the measuring stick we need to pay attention too. Ultimately, supplements and nutrition are not going to stop the progression of HIV, and its very difficult to say if nutrition and supplementation really does all that much. Perhaps it might buy some time, but that is really the best you can hope for.

What I'm concerned with today, post meds, is that there is an attitude that we can "beat" HIV with some strange plant or supplement or magic food, or something someone conjures up to sell to us. That we want to believe in something natural is going to keep HIV at bay. We really need to accept what HIV is. A virus our bodies cannot ultimately control. We need to medicate when it is time. And the guidelines reflect that time to go on treatment. Because the best treatment results occur when your immune system is still in relatively good shape and able to recover after treatment.

I pretty much stayed with the guidelines, but still waited too long because I was fighting a delaying action for so long, I thought I might be able to stay off of treatment for another 6 months or a year... In my MIND. I felt bad for a year, when I didn't need to. My CD4 is up to around 600... which I haven't seen for years. I feel remarkably better. And my side effects are minimal, certainly nothing I can really put my finger on as a comparison. If one delays treatment, one is playing with fire. So all this talk about nutrition and supplementation can be misleading us to not do what we need to do. Which is embrace treatment.

The demarcation on to treatment is psychologically significant. So I understand the reticence. I don't think we talk enough about the significance of admitting that we need to take meds for the rest of our lives. (even if we take a break, its part of the treatment cycle.) But I would say, don't be deluded. Don't be fooled. Don't try to skirt the issue. Treatment is the only thing that suppresses the virus. Treatment is the only thing that allows our immune system to recover. That is the truth of it. We need to accept the truth.

So folks can tout this and that, as I have, but in the end, its largely fluff. And we shouldn't be fluffing around when the guidelines are telling us when to go on treatment.
« Last Edit: March 03, 2010, 10:24:15 AM by risred1 »
risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

Offline Jeton

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Re: Icrease in immunity - Other medicine?
« Reply #20 on: March 03, 2010, 10:38:42 AM »
As a person who has used supplements before having to go on meds, and continues to do so....

Nothing replaces the "value" of a good diet. However, no matter what supplements or diet you use, HIV mostly likely will require treatment. There are a few who can "control" hiv, but they are a very small exception. And probably has very little to do with Diet and Supplements. Either their body has the genetic ability to handle HIV or not.

There is no Magic Food or Supplement out there to manage HIV. PERIOD! No article, no website, no book has the answer. They will often promote their own products. Which means the information they provided should be looked at with a questioning eye by us.

Every few months, we are going to hear about what I will call the "supplement" of the month. Some anti aging miracle compound that is going to make up for all the deficiencies.... don't fall for it. What you're looking at and quoting from is probably marketing materials. Like a cure for Baldness or small penis. Again, don't start "believing" something because it sounds good.

What does make sense to me is being tested for deficiencies. If you have low levels of Vitamin D, for example, that is something you can easily and inexpensively correct, perhaps as easily as getting more sun. B levels, other potential deficiencies... whatever. A good diet can cover many of these things, but sometimes we have issues that require further steps.

Secondly, if your HIV positive, I believe we need to stop looking at studies that depict, "normal" people. By normal, those who are HIV negative. We are no longer in that world. Looking at information about those not dealing with a chronic infection, simply doesn't apply to us. The way HIV affects us is its own thing....

We do know that HIV affects a good number of body systems. Metabolic, Vascular, Hepatic, Renal, Digestive as well as obviously the immune system. Lots of folks have to find a way to deal with these side effects of the infection. Dealing with Side effects is just that. It is largely about mitigation.

Mitigation isn't going to stop HIV. For me, its about improving quality of life. If HIV caused diarrhea is an issue, there are a number of ways to address that. Fatigue, there are things that might help. And so forth.

Ultimately, my view is that one should pay attention to the treatment guidelines that have been published and adhere to them. Be it a CD4 count of 350 or 500 as the line, or a VL about 100k. That's the measuring stick we need to pay attention too. Ultimately, supplements and nutrition are not going to stop the progression of HIV, and its very difficult to say if nutrition and supplementation really does all that much. Perhaps it might buy some time, but that is really the best you can hope for.

What I'm concerned with today, post meds, is that there is an attitude that we can "beat" HIV with some strange plant or supplement or magic food, or something someone conjures up to sell to us. That we want to believe in something natural is going to keep HIV at bay. We really need to accept what HIV is. A virus our bodies cannot ultimately control. We need to medicate when it is time. And the guidelines reflect that time to go on treatment. Because the best treatment results occur when your immune system is still in relatively good shape and able to recover after treatment.

I pretty much stayed with the guidelines, but still waited too long because I was fighting a delaying action for so long, I thought I might be able to stay off of treatment for another 6 months or a year... In my MIND. I felt bad for a year, when I didn't need to. My CD4 is up to around 600... which I haven't seen for years. I feel remarkably better. And my side effects are minimal, certainly nothing I can really put my finger on as a comparison. If one delays treatment, one is playing with fire. So all this talk about nutrition and supplementation can be misleading us to not do what we need to do. Which is embrace treatment.

The demarcation on to treatment is psychologically significant. So I understand the reticence. I don't think we talk enough about the significance of admitting that we need to take meds for the rest of our lives. (even if we take a break, its part of the treatment cycle.) But I would say, don't be deluded. Don't be fooled. Don't try to skirt the issue. Treatment is the only thing that suppresses the virus. Treatment is the only thing that allows our immune system to recover. That is the truth of it. We need to accept the truth.

So folks can tout this and that, as I have, but in the end, its largely fluff. And we shouldn't be fluffing around when the guidelines are telling us when to go on treatment.


good post overall, n great Gara avatar, but i'd beware throwing the baby out with the bathwater. i've found myself having to be surprisingly loud here about the necessity of controlling HIV asap with ARV, but for years i've also argued against treatment orthodoxy because studies HAVE shown that HIV and certain ARVs deplete certain nutrients in the body at a faster rate than normal.

u can't let the need to keep people realistic (like the woman elsewhere on this site asking "what's the best way to avoid meds as long as possible?") overcome the reality of basic science.

the supplement industry remains a bit of a Wild West environment, and there is legislation in Congress to tighten up regulation of the industry, some of which i favor (making sure what's on the label is actually in the bottle, making sure there's no contaminants, preventing unsupported claims) and some of which i don't. to my mind there is a categoric difference between saying "compound x will do y" (which should require FDA-approved proof) and saying "the abcd peoples of 123-land have used compound x for y for millenia" or "the following peer-reviewed study showed xyz effects from compound 3 in abc participants" (which should not require FDA-approval, only literal truthfulness...ie, "abcd peoples" had really better exist in123-land n have a documented history of using compound x for y reasons for millenia)

one thing ACT-UP set an example for as the right of people to own their own bodies, and take their own risks. that right is inalienable. however, literal truth in advertising should be required and deceptive marketing practices prosecuted.


Offline risred1

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Re: Icrease in immunity - Other medicine?
« Reply #21 on: March 03, 2010, 11:53:20 AM »
My perception is that we become, fixated on how we ultimately perceive HIV.

And I will say, that I'm no different than most in that regard.

But what I will accept is that through experience, my belief's should change with the times!

HIV knowledge isn't static. As we learn more, we can do more for ourselves. Yet the nature of the epidemic has scarred us. These emotional wounds often don't allow us to update our perception.

As BT65 has long been an advocate that supplements are a waste of time. That has much to do with his lack of results in following someones advice on how to manage HIV with supplementation, with obviously poor results. I don't expect BT65 to change his thought process. Betrayal is Brutal...

What I have learned over the year of HIV infection, which doesn't compare with other on this site, but is of course my journey, is that you can do things for yourself, but you can't win. Like many a video game. It just gets harder and harder and ultimately it will defeat you, no matter how good you get.

That doesn't mean there are things that we need to be on the lookout for. Vitamin D is certainly one of those things. If we were to follow BT65 Advice, its worthless. That's where pronouncements are a tricky thing. If one is deficient in something, then correction should be taken. That may involve supplements. Throwing all supplements under the bus is something I wouldn't advise.

But we shouldn't put stock in HIV management from a perspective that there really is HOPE that nutrition, supplementation, and exercise somehow is the "answer". It isn't. Plenty of folks like BT65 know better. People who supplemented with everything, who controlled their diet, exercised and tried to control their minds only to succumb. They may have extended their life, but the conclusion is obvious. These things really don't work as some would have us believe.

I believe in Mitigation of Side Effects, Managing or correcting deficiencies, and treatment when its Time per the guidelines we have been provided.
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: Icrease in immunity - Other medicine?
« Reply #22 on: March 03, 2010, 04:56:09 PM »
Risred, first, of all, I'm female.  2nd'ly, I don't debunk the efficacy of a good multi-vitamin, and calcium w/ vitamin D; both of which I take.  A lot of supplements, homeopathy, herbs etc. as treatment for HIV, or any other disease?  That I don't believe in.  It's a waste of money, and frankly, I take enough meds.  I don't want to pour more down my throat that aren't necessary.
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: Icrease in immunity - Other medicine?
« Reply #23 on: March 03, 2010, 05:10:54 PM »
BT is wise. Unless they are medically indicated supplements and vitamins will do nothing more than give you very expensive piss.

MtD

Offline risred1

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Re: Icrease in immunity - Other medicine?
« Reply #24 on: March 03, 2010, 11:40:58 PM »
BT65 - sorry about the gender mistake...

However, you rarely qualify your statements. You usually make pronouncements about supplementation, as you did in this thread. I take you at your word however, that your experience as with mine, was ultimately futile.

To me, if you don't distinguish your statements, then what you say is consistently, none of this stuff works. I'm not really disagreeing with you ultimately.

However, if we are talking about mitigation of side effects, how do your statements "work" in that context? Or reconsile what you just stated about taking supplements, when you say you have a box under your bed that are worthless....

To me, that box sounds like everything. But now you state you're taking supplements. So I apologize if I'm confused.

I respect you and of course Matty, and maybe I'm splitting hairs. But then what is our position on these things? Is my position regarding, Mitigation, Corrections of Deficiencies, and acceptance of Med when its time something you have issue with?

If my interpretation of you're statement is going to far, I apologize of course.
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 Matty the Damned

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Re: Icrease in immunity - Other medicine?
« Reply #25 on: March 03, 2010, 11:54:30 PM »
My position is pretty clear. Supplements (including vitamins) are of use where they are medically indicated, eg in cases of particular deficiencies etc.

There is an undercurrent of woo when it comes to the supplements industry and it's this that I object to.

Now there are numerous situations where poz folks may suffer from vitamim and mineral deficiencies and to my mind these are best corrected with a suitably balanced diet. Where deficiencies are more serious then a quality supplement recommended by a health professional should be used.

Judiciously.

It's fair to say that many poz folks in the west have poor diets (eg too high in fat and refined carbohydrates, lacking fresh fruits and vegetables etc) especially if they dwell in a low income bracket. In those cases a quality multi-vitamin supplement taken as directed is of benefit, or at the very least can do no specific harm.

MtD

Offline BT65

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Re: Icrease in immunity - Other medicine?
« Reply #26 on: March 04, 2010, 07:19:40 AM »
It's well known, and accepted by the medical community, that a multi-vitamin, and calcium with D when one starts aging, are good additions to one's diet and health.  My sister firmly believes in taking vitamin C when she has a cold.  I tried that a few times, and it didn't get rid of the cold.  I don't believe it did anything. 

My mom had a problem with her eyes, and one of her "natural healing" friends touted vitamin E.  My mom started taking it, and it did nothing. 

If a medical doctor suggests taking a certain vitamin, due to a deficiency, then I am a firm believer in that situation.  However, to just take a vitamin, herb, or supplement, because a person, or group of people are singing its praises, well, that I don't believe in. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline risred1

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Re: Icrease in immunity - Other medicine?
« Reply #27 on: March 04, 2010, 03:42:10 PM »
What I've always found interesting is that there often is much common ground when we really dig at things.

Essentially we have the same opinion. But of course how we express those opinions can differ in substance and style.

Pre Meds, I had a I am my own lab experiment view of the world. You do some research, you think about ones situation, and I was inclined to give it a go.

In essence, expensive urine, but lets see if the lab numbers show anything.

I had the belief that I had delayed my need for meds. And even received tacit approval from my ID doc, who said, "whatever your doing, keep doing it.". Weather it was the supps, or simply that I was able to maintain levels it seemed at least encouraging. But as we all pretty much had or have to deal with, at some point we need to embrace prescription medications.

But beyond simply weather my CD4 were stable and ultimately falling, and my VL stable and eventually increasing, I was able to manage my HIV diarrhea, improve my Liver Counts, Lower my total Cholesterol, and slightly improve my fatigue levels.

So while I can't say for certain that those supplements I took with the eye to improving my immune function was really effective, I will say with more certainty that I was able to Mitigate some of the effects of HIV.

Now that I'm post meds, some of the issues are now of a different sort. Looking at Mitigating/compensating for the effects of the Meds.  Vitamin D, Calcium, Multi Vitamin, Selenium, Yogurt, Psyllium Fiber are all companions to my Reyataz/Truvada/Norvir Combo and throw in some ALC as a Neuropathy prophylactic.

I do not take Herbal Supplements any more.

I don't take claims of Resveratrol, Q10, or all the miracle anti-aging stuff all that seriously. And even then, what do we know about the interaction with the ARV's we are taking?

I don't know what is the "best" advice though. Except to understand exactly what your trying to do and to know that folks are trying to sell us stuff. And that we should not put any stock into anything that says "cure" in regards to HIV. And that we should not delay treatment hoping that supplements will change the game.
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 Miss Philicia

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Re: Icrease in immunity - Other medicine?
« Reply #28 on: March 04, 2010, 03:46:14 PM »
Actually from what I recall we spent an entire three years trying to tell you this, up until rather recently.
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Offline risred1

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Re: Icrease in immunity - Other medicine?
« Reply #29 on: March 05, 2010, 02:50:42 AM »
But how were those thoughts being conveyed?

Usually, those discussion were demarcations of Good or BAD or as BT65 would say...

shoebox filled with supplements under the bed.

Expensive Piss, is still being used.

I feel my position matured, but was focused on hopeful things, but never believed that supplements were the "answer". I always thought that there might be a some benefit from an Immune standpoint.... but accepted that it was only at best a delaying action.

I consistently maintained that mitigation, I did not use that word and i wish I did, of side effects was the primary purpose of my supplementation. I had fatigue problems.. So what else is new. We all did or do.... i took ginseng and it helped.

Astragalus didn't do a thing... I Hope I shared that i didn't think much of ADAPTOGENS. I tried to show folks where they can get information that I thought was reasonable. I found a good place to get supplements and shared that.

Diarrhea - Glutamine and Yogurt

Nausea - Ginger

Liver issues - ALA, ALC, NAC

Immune Boost - Selenium

Yes, I talked about KPAX and listened to others regarding it. I did show how one could make a much lower costing version of KPAX for those who were interested. I know of several folks who thanked me for the information I provided and how to obtain quality supplements at a reasonable price. I'd like to believe I was of some service.

This of course happened over the years.

I got yelled at by a good number of people, one who said I'd live to regret saying the word "manageable" and HIV in the same sentence. We've had all sort of nasty discussions regarding food and nutrition and supplements.

What still frustrates me, though, in the end, we all admit to taking some sort of supplement.

So what are we or were we arguing about if in essence we end up agreeing on many points.

Would it be fair to say we have all evolved from our hardened positions?

If we are taking Pills... Vit D for example. We are supplementing...

And many of us are really looking hard at D levels. Getting Tested and taking corrective action.

The point is, ultimately, what we use to say is now just an echo of where we are today. Thus, we still rely on making statements about shoebox's and piss.

Dealing with HIV is no picnic, but once we can start tearing down our own stigmas about it, and through experience seeing how we don't need to hold on to out of date ideas, we can update our perceptions.

I actually like having my bias's and prejudices trumped by experience. Because you can let go of preconceptions.

For me, for my entire life, preconceptions got in the way of me growing. In the end, you don't know until you really know. Sometimes it can be what you thought it would be, but rarely is it exactly what you thought it would be.

What my point is, we all need to move on when we can. And recognize that some of our reactions, or standard points of view like Shoebox's and Piss are not current to what we now understand about supplements. Is it all supplements? of course not. But some being OK, means there has been a shift.

My optimism is my burden. I hope and trust that things will work out. I try things to see what will happen. I like to talk about things I'm trying. I'll justify my thinking. And then, what are the results....

What I hope now is that there are moments when we can help each other. And occasionally, we get to rehash some of these things, as the age old questions continue to appear over and over again.

Have you noticed how the board has changed over the years? There's a lot less to write about in the nutrition forum. And even in the Treatment Forum. I'm hoping that ultimately, we are helping each other.
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: Icrease in immunity - Other medicine?
« Reply #30 on: March 05, 2010, 06:15:17 AM »
Risred, I never said the shoebox full of supplements I had was "under the bed."  On the contrary, it was right by my bed, so I could take them on rising.  A multi-vitamin, and calcium w/ D, are far cries from Kpax, selenium etc.   Unless a doctor highly recommends me taking a supplement, I'm not taking it, bottom line.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline risred1

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Re: Icrease in immunity - Other medicine?
« Reply #31 on: March 05, 2010, 08:44:33 AM »
And I'm sorry that I'm picking on the shoebox thing.... its a great illustration, which helps me make the point.

Doctor Approved/Encouraged. How can anyone argue with that?
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 Hoover

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Re: Icrease in immunity - Other medicine?
« Reply #32 on: September 09, 2010, 10:46:47 AM »
I converted In May of 2010 and had a CD4 of 348. The doctor wanted to put me on the usual drugs but I opted not. (At some time in the future I am sure I will get on them or hopefully improved ones by that date)  My partner and I did our research and got me on herbs and vitamins and a hyperbaric chamber.
With 4 tests done, each month my CD4 keeps going up. Last time in July it was up to 620.
I am not saying that the herbs are the reason for my increase, but something in me has improved.
We spent August in Amsterdam and I was not consistent with my herbs and minerals and I am awaiting my latest results to see if there was any affect.

When I receive my latest result, I will post it.
Below are the pills I take daily if anyone is interested, they are all also for anti-aging as they are antioxidants.

NAC 600 mg
Selenium 200 MCG
SOD
Beta Glucan
Shilajit
Saventaro
Silver water 2 ounces daily
Reservatrol 50mg  (not with super catís claw)
Catís claw 505 mg
Beta Glucan beta 1,3
Astragalus root 500 mg
Infection date: March 16, 2010
20/05/10 - CD4 348  VL 58,000  Lymph nodes in jaw painful!  Antioxidants started.
01/06/10 - CD4 428  VL?
24/06/10 - CD4 578  VL 9,800
13/07/10 - CD4 620  VL?
04/09/10 - CD4 648  VL?
01/11/10 - CD4 710  VL?   CD8 972
16/12/10    CD4 738  VL?  CD8  896   
02/02/11    CD4 520 (month of parasites and new lab)
14/03/11 started Truvida and Sustiva (Efavirenz)
04/07/11 CD4 686 VL 75 CD8 588  41%
10/10/11 CD4 757  45%  VL UD

Offline Ann

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Re: Icrease in immunity - Other medicine?
« Reply #33 on: September 09, 2010, 11:22:21 AM »
Hoover, it's normal for the counts of a newly infected person to start rising in the months following infection. It's most likely nothing to do with the supplements.
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Offline Hoover

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Re: Icrease in immunity - Other medicine?
« Reply #34 on: September 09, 2010, 01:14:19 PM »
Ann thank you for the quick response.
My HIV doctor said that whatever I am doing to keep it up as he had never seen results like mine .
Apparently he believes in alternatives to standard meds, but I suspect you don't.
I am not selling snake oil nor suggesting anyone follow my lead, I am only posting my experiences and test results.

Also I might mention to the newly diagnosed with lymph node issues, get a mini-trampoline.
My jaw hurt so badly that I couldn't close my mouth. After a week with my trampoline (10 minutes a day) the lymph in the jaw shrank and stopped hurting. Maybe that is normal for the newly diagnosed also, but it worked according to the research out there.

Here is hoping for a free exchange of ideas and experiences.

Hoover
Infection date: March 16, 2010
20/05/10 - CD4 348  VL 58,000  Lymph nodes in jaw painful!  Antioxidants started.
01/06/10 - CD4 428  VL?
24/06/10 - CD4 578  VL 9,800
13/07/10 - CD4 620  VL?
04/09/10 - CD4 648  VL?
01/11/10 - CD4 710  VL?   CD8 972
16/12/10    CD4 738  VL?  CD8  896   
02/02/11    CD4 520 (month of parasites and new lab)
14/03/11 started Truvida and Sustiva (Efavirenz)
04/07/11 CD4 686 VL 75 CD8 588  41%
10/10/11 CD4 757  45%  VL UD

Offline Miss Philicia

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Re: Icrease in immunity - Other medicine?
« Reply #35 on: September 09, 2010, 01:51:59 PM »
lovin' the trampoline/lymph node interconnection
"Iíve slept with enough men to know that Iím not gay"

Offline Hoover

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Re: Icrease in immunity - Other medicine?
« Reply #36 on: September 09, 2010, 02:22:05 PM »
Unlike the circulatory system which uses the heart as a pump, the lymph system relies on body movement, that is, exercise to circulate lymph around the body. The trampoline works great for this and most people can do this exercise very easily.
There is a lot of information about this but many doctors do not know of it. My HIV doctor said my nodes would bother me until I got on meds.... NOT!
Also there are very expensive mini-trampolines which say they are best for this, but my $40.00 one works just fine.

Hope this is of help to someone.

Hoover
Infection date: March 16, 2010
20/05/10 - CD4 348  VL 58,000  Lymph nodes in jaw painful!  Antioxidants started.
01/06/10 - CD4 428  VL?
24/06/10 - CD4 578  VL 9,800
13/07/10 - CD4 620  VL?
04/09/10 - CD4 648  VL?
01/11/10 - CD4 710  VL?   CD8 972
16/12/10    CD4 738  VL?  CD8  896   
02/02/11    CD4 520 (month of parasites and new lab)
14/03/11 started Truvida and Sustiva (Efavirenz)
04/07/11 CD4 686 VL 75 CD8 588  41%
10/10/11 CD4 757  45%  VL UD

Offline Miss Philicia

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Re: Icrease in immunity - Other medicine?
« Reply #37 on: September 09, 2010, 02:26:58 PM »
Hey Hoover, and welcome to the forums -- just curious what's up with the use of the hyperbaric chamber.  Can you explain this in further detail?

Thanks.
"Iíve slept with enough men to know that Iím not gay"

Offline jkinatl2

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Re: Icrease in immunity - Other medicine?
« Reply #38 on: September 09, 2010, 02:36:01 PM »
Back when I first joined AIDSMEDS, there was a poster who advocated mini-trampoline use as an alternative to HAART. If memory serves, most of his proof was found on sites that, shockingly, sold mini-trampolines.

Hoover, you have chosen an odd place to jump into the discussion, and combined with your immediate characterization of one of our moderators, flags are raised.

The benefits of regular exercise to maintain, even improve health are well documented. Ann has never discounted the use of alternate therapies, as you suggest.

 She applies the same scientific standard to them that she does to prescribed medications, however. And while there is some evidence that both HIV and the drugs used to treat it have an impact on the absorption of vitamins and minerals (as HIV resides in the gut to an amazing degree) there is no consensus that anything beyond a balanced diet and perhaps a daily multivitamin are necessary to maintain health.

I asked this same question in 2005:

Please show me the first-tiered peer-reviewed evidence that mini trampoline use has anything to do with CD4 count.

And while we are on the subject, why specifically mini-trampolines? Why not Wii Fit? Riding a bike? cardio/resistance training at home or the gym? And if it's the bouncing effect of the trampoline, I can think of other bouncy activities that require only a willing partner.

As for myself, I am skeptical. But skeptical should be a GOOD thing, right? I mean, it's skepticism of mainstream medical formulas that steers people into alternative therapy to begin with, right?

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Hoover

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Re: Icrease in immunity - Other medicine?
« Reply #39 on: September 09, 2010, 03:37:37 PM »
I must be confused, I thought this site was a discussion group.
To my knowledge I have said nothing offensive but yet I was dismissed by one person then attacked by another. My thought was that I have spent 4 months doing research to help myself with my new illness and now found a place where I believed I could share that information with others. Maybe someone in this group could even offer something constructive.

From reading  jkinatl2's profile he appears to be a nice person but his comments were not kind.
Yes I am sure there are some self serving people who hack this site to push their own agenda, but my intents are purely to help those in my position.
First I did not say or imply that a trampoline would increase CD4s, I said it stopped the painful lymph nodes in my jaw. Second, if I were selling trampolines, I would recommend a specific brand not the cheapest.

Now that that unpleasantness is over I would like to respond to Miss Philicia who asked a question.
There is not much research on Hyperbaric chambers and HIV but I found some obscure data on Autistic children and their response to HBT treatments. Yes there is a lot of information generated by people selling the machines but we try to get past their junk and find real research.
Not everyone can afford $17K for a chamber and I am not sure it if is of any benefit but I am testing it.
This month I plan to stop my daily 90 minute treatments and keep all my herbs/minerals the same as always and after a month retest my CD4s. This is the only way I know to test to see if there is any difference with or without the chamber. If anyone has something to offer in advice on how to better carry out this test, I am all ears.
Hopefully I will get to post my results in a month.

In no way do I suggest anyone buy a chamber! My partner is protective of me and will do anything to keep me healthy including buying a chamber....
 
Infection date: March 16, 2010
20/05/10 - CD4 348  VL 58,000  Lymph nodes in jaw painful!  Antioxidants started.
01/06/10 - CD4 428  VL?
24/06/10 - CD4 578  VL 9,800
13/07/10 - CD4 620  VL?
04/09/10 - CD4 648  VL?
01/11/10 - CD4 710  VL?   CD8 972
16/12/10    CD4 738  VL?  CD8  896   
02/02/11    CD4 520 (month of parasites and new lab)
14/03/11 started Truvida and Sustiva (Efavirenz)
04/07/11 CD4 686 VL 75 CD8 588  41%
10/10/11 CD4 757  45%  VL UD

Offline jkinatl2

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Re: Icrease in immunity - Other medicine?
« Reply #40 on: September 09, 2010, 04:09:38 PM »
I apologize. I meant no disrespect. Do you have any first tiered peer-reviewed evidence to support the bouncing motion as regards lymph node activity? I think it would make interesting reading.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline newt

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Re: Icrease in immunity - Other medicine?
« Reply #41 on: September 09, 2010, 06:38:27 PM »
Quote
There is not much research on Hyperbaric chambers and HIV but I found some obscure data on Autistic children and their response to HBT treatments.

The key word here is obscure.

A healthy life is good for people with HIV, and not doing drugs, meditation etc will contribute to a healthy life.

But in the end turnip or flower picked by the full moon will not do squit against the the natural history of HIV. Unless you treat it it will get you.

I am pro treatment, and pro healthy life, but I do not believe in effective alternative treatments that make for significantly better immunity for people with HIV, because whatever you can find on the web or in odd journals the evidence is not in favour. Esp on the hyperbaric oxygen point. People like to look at alternatives because it's attractive/non-ARVs and no-one really wants to do day in day out chemotherapy. It's all a bit of distraction. HIV requires a certain philosophical humility, or else exceptional bravery.

- matt
"The object is to be a well patient, not a good patient"

Offline Hoover

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Re: Icrease in immunity - Other medicine?
« Reply #42 on: September 09, 2010, 07:02:55 PM »
I will do two replies in one:

Jonathan: I am glad we got past our misunderstanding!
You like Annie Lennox, Buffy and Dr. Who, you must be a great guy.

I have no clinical proof on the use of the trampoline and lymph glands.
All I know is that I read it would work for my painful jaw and then it fixed the node!
Actually it was one of those people who denies the existence of HIV that told me to use the trampoline. Funny that you can find good information from the oddest sources.
The 20,000 colonies ($40.00) was well worth the trampoline and it sits nicely in my gym.

Newt:
We will all have to go to meds eventually and I accept it, but will do what I can to avoid the issues. Maybe by the time I need meds, there will be even better ones on the market.
In this country all we can get is AZT from India... The herbs I take work with my anti-aging and cause no harm. Last week my anti-aging doctor implanted 14 testosterone pellets and I have lots of energy.
My partner says "Better living through chemistry."

Time for a drink and cook some dinner.

Cheers,
Hoover

Infection date: March 16, 2010
20/05/10 - CD4 348  VL 58,000  Lymph nodes in jaw painful!  Antioxidants started.
01/06/10 - CD4 428  VL?
24/06/10 - CD4 578  VL 9,800
13/07/10 - CD4 620  VL?
04/09/10 - CD4 648  VL?
01/11/10 - CD4 710  VL?   CD8 972
16/12/10    CD4 738  VL?  CD8  896   
02/02/11    CD4 520 (month of parasites and new lab)
14/03/11 started Truvida and Sustiva (Efavirenz)
04/07/11 CD4 686 VL 75 CD8 588  41%
10/10/11 CD4 757  45%  VL UD

Offline Hellraiser

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Re: Icrease in immunity - Other medicine?
« Reply #43 on: September 09, 2010, 08:24:02 PM »
So maybe you're missing a little dialogue that's been ongoing for a very long time here at Aidsmeds (well before you or I joined).

1) Regardless of how you feel about Herbal/Holistic/Alternative therapies the only really truly effective treatment for HIV is HAART

2) Trying to make a tenuous connection between anything other than HAART and your improving CD4 results will most likely get you at the very least dismissed and perhaps even openly mocked.  This is what you saw happening in the beginning of this thread.

3)  Everyone and I mean everyone has a nosedive in CD4 during the initial infection with HIV and it recovers to a more stable level as your Viral Load dips down to something manageable for a while.  If you ask Philicia nicely she may even post the graph she's used in other threads for you.  This would happen no matter if you were taking powdered babies, highly enriched uranium, or the souls of cats you ritually sacrificed.

The responses to your post were actually quite tame and decidedly civil and if you think I'm kidding you should read through some of the other responses given to newer posters who come in with unbelievable claims.  (The colloidial silver thread being possibly my favorite)

Offline Hoover

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Re: Icrease in immunity - Other medicine?
« Reply #44 on: September 09, 2010, 08:37:23 PM »
Hell Raiser,

I do not believe anything you had to say was helpful. Why do you bother, are you that unhappy?
After reading your post I can see why there is an ignore button.

Even if I am naive, do you not have the kindness to turn a blind eye and say to yourself that the newbie will eventually learn? Shame on your for your callousness. We are all in the same boat and I would hope better from everyone concerned.

So what would you have me do in my situation? My CD4s are now too high to start meds and in this country I can only get old meds from India. I freely admit that I will be on meds some day.

Since you mentioned the colloidal silver, that takes care of the many parasites we endure on a daily basis here in a third world country.

Hoover
Infection date: March 16, 2010
20/05/10 - CD4 348  VL 58,000  Lymph nodes in jaw painful!  Antioxidants started.
01/06/10 - CD4 428  VL?
24/06/10 - CD4 578  VL 9,800
13/07/10 - CD4 620  VL?
04/09/10 - CD4 648  VL?
01/11/10 - CD4 710  VL?   CD8 972
16/12/10    CD4 738  VL?  CD8  896   
02/02/11    CD4 520 (month of parasites and new lab)
14/03/11 started Truvida and Sustiva (Efavirenz)
04/07/11 CD4 686 VL 75 CD8 588  41%
10/10/11 CD4 757  45%  VL UD

Offline jkinatl2

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Re: Icrease in immunity - Other medicine?
« Reply #45 on: September 09, 2010, 10:48:55 PM »
Here's the thing.

At some point, each infection is an individual thing. What works for me might not work for you, and vice versa. some people gain great strength in having massive amounts of sex and eating junk food, drinking to excess and/or doing drugs, legal and illegal. Many of us continue to do these things even when on HAART therapy, and survive. Even thrive.

Others live moderate lives of fidelity and abstinence, eat a balanced diet and reduce stress, and grow ill and die regardless of medication. Goddess knows, we have seen enough of both situations here in this forum.

Thing is, there really IS no "one size fits everyone" advice for alternative therapy. We DO know that HAART works - and as you pointed out, what might be available to some people might not be available to others. HAART is a catch-all phrase which means literally hundreds of combinations using dozens of different drugs. sadly, your choices might be dictated largely by where you live. That is a subject for another forum, of course.

I wish there was an answer in the realm of alternative medicine that worked for everyone - or even for a statistically significant number of people. Sure, a  multivitamin is recommended, or at least not discouraged for people with HIV. Of course, as has been mentioned before, some people have deficiencies that are specific to them, and additional supplements might be advised after tests are done.

What worries me is the trend from the 1990s to "mega-dose" on certain supplements. This can lead to some very dangerous effects. A person who is systematically poisoning him/herself is NOT doing his/her immune system any favors.

I hope you are talking to your physician about the non-prescribed drugs and therapies that you are attempting, and I hope (fingers crossed) that your doctor knows enough about those therapies to advise you, either to continue or to stop. We already know a number of alternative supplemental therapies work VERY poorly with HIV drugs, and others can stress the immune system even without prescribed drug therapy.

I think the most important thing when considering alternative therapy is to not allow yourself to be talked into lowering the bar for scientific proof. In addition, research any medications you might be prescribed to treat HIV thoroughly, of course. It is important that we know what we are putting into our bodies, and why.

Regardless, I certainly wish the OP and the new member(s) the very best of fortune. Because sometimes, it really all boils down to our individual responses to HIV.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Hoover

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Re: Icrease in immunity - Other medicine?
« Reply #46 on: September 09, 2010, 11:07:16 PM »
Wow I lasted almost 12 hours on this forum!
It appears many of you know everything and anything I may have to offer is useless.
At no time did I say what I am doing is correct or advise anyone replicate my actions.
We are all individuals with specific responses to our illnesses and our meds.
I wish you all the best luck with the paths you have chosen, but do not think this forum is correct for me.

It is sad to see how bitter and hateful some people can become.

Peace to you all from paradise,
Hoover

Infection date: March 16, 2010
20/05/10 - CD4 348  VL 58,000  Lymph nodes in jaw painful!  Antioxidants started.
01/06/10 - CD4 428  VL?
24/06/10 - CD4 578  VL 9,800
13/07/10 - CD4 620  VL?
04/09/10 - CD4 648  VL?
01/11/10 - CD4 710  VL?   CD8 972
16/12/10    CD4 738  VL?  CD8  896   
02/02/11    CD4 520 (month of parasites and new lab)
14/03/11 started Truvida and Sustiva (Efavirenz)
04/07/11 CD4 686 VL 75 CD8 588  41%
10/10/11 CD4 757  45%  VL UD

Offline jkinatl2

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Re: Icrease in immunity - Other medicine?
« Reply #47 on: September 09, 2010, 11:20:22 PM »
Wow. Just wow.

You lasted as long as you wanted, or until someone actually "discussed" in a discussion forum the things you had to say.

best of luck, you are missing out on some of the best HIV knowledge in the world, here.

Also, I feel like I typed an awful lot for nothing.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline natthai

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Re: Icrease in immunity - Other medicine?
« Reply #48 on: September 10, 2010, 12:54:48 PM »
I can offer my own lab results in support of jkinatl2 correct statement that "At some point, each infection is an individual thing" and why it is a good idea to keep an open mind as microbiology and genetics knowledge is expanding exponentially now.

For example:
3)  Everyone and I mean everyone has a nosedive in CD4 during the initial infection with HIV and it recovers to a more stable level as your Viral Load dips down to something manageable for a while.  If you ask Philicia nicely she may even post the graph she's used in other threads for you.

This strongly given assertion however is technically incorrect. This nosedive in CD4 that you refer to everyone and you mean everyone as having didn't happen to me. I have a relatively new infection and I know the exact time and date of exposure. Furthermore I was diagnosed with the Nucleic-acid Test which has a sensitivity window of 12 days post exposure. My doctor informs me that I have now reached set point which is the stable level I assume you are talking about where VL dips for a while. However, since baseline lab results, my CD4 and CD4% have continually increased.

I am certain what graph you are referring to however it sounds like the graph on wikipedia that my doctor drew for me on the day I received the diagnosis and it is here:

http://en.wikipedia.org/wiki/File:Hiv-timecourse.png

The caption reads "A generalized graph of the relationship between HIV copies (viral load) and CD4 counts over the average course of untreated HIV infection; any particular individual's disease course may vary considerably. "

So in other words, although many may see a nosedive it certainly isn't going to be the same for everyone. Since then I have wondered why my progression so far has not followed the general pattern and I was told the following:
"The level of viral load set point (in this case quite low) generally predicts how rapid the natural course of HIV will be (in this case may be slow)."

I posted my lab results and "asked the expert" at thebody.com, his response was:
"your immune system is able to control to HIV replication, thus preventing your CD4 count from decreasing significantly."

So from these two replies, I am not exactly sure what this means as far as a prognosis or expected disease progression. I would love to hear others experience on this issue. Especially those that knew their infection date (or close to it), have regularly monitored their progress and who had high CD4 at the end of their set point or who's numbers did not follow the general trend. Specifically I would like to hear about any characteristics/ behaviors /diet / supplements you attribute as contributing to your good results. I have one novel candidate in mind but I don't want to reveal it yet until I have gathered more research so as to avoid incurring the mournful wrath of opposing the orthodoxy.

To get back to the OPs question (I hope you are still around). Some of the replies in this thread were not so helpful. The OP was specifically asking for tips on diet, supplements, and complimentary therapies. Instead of strongly asserted, unsubstantiated opinion (given with the highest of confidence) on what does not work, it would be nice to see more offerings of what he asked for- advice on some helpful/positive steps that others have found DO work.

Personally, I believe that certain supplements/lifestyle/dietary choices I have implemented since my diagnosis have been helped. I believe there are specific things you can do to strengthen your immune system. I am not sure if this is exactly the same thing as "Increase in immunity" however.

My doctor told me that "nutrition is Key to disease progression." Dr. Montagnier has also talked a lot about the importance of nutrition on building up a strong immune system. Especially after acute or initial infection when the virus is exploding at high numbers it is competing with your body's systems for many micronutrients and vitamins. When it replicates it needs to take nutrients from your body to build its proteins. As a result, HIV positive people are shown to have chronically lower levels of: Selenium, Vitamin D, Calcium, Melatonin, Zinc etc etc. So one beneficial proactive step you could consider is testing for nutritional deficiencies/consulting with a nutritionist and restoring nutrient levels and/or ensuring that you are eating a healthy diet high in fresh veggies.

Take Vitamin D for example; there have been many recent studies suggesting the importance Vit D levels play in immune function. Furthermore, it has been shown that HIVers are often deficient in Vit D. So eating a diet high in Vit D, getting exposure to sunlight and testing for deficiency may be quite helpful.

Is there anything that you can do specifically to increase CD4 cells? Perhaps, keeping in mind that CD4 cells were only discovered in the late 70s and named in 1984. As with all T cells, they are produced in the Thymus. There are exogenous (made by your body) hormones which stimulate the thymus to produce more T cells. Has anyone run across the statement that "absolute CD4 cells are highest at night and lowest in the day?" There is a clue here. How many people I wonder here actually get the amount of sleep recommended for regular healthy people, let alone enough sleep for an immune compromised individual. Considering the importance high quality sleep plays on immune function this may be another avenue to investigate.

Searching pubmed for "hiv" reveals over 200,000 studies! There is a tremendous amount of information to be learned and its changing all the time. I applaud anyone who is seeking answers. I agree that this is one of the best sources of information and I would love to see a community discussion focused on support and progress.
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline Hellraiser

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Re: Icrease in immunity - Other medicine?
« Reply #49 on: September 10, 2010, 01:00:14 PM »
However, since baseline lab results, my CD4 and CD4% have continually increased.

*sigh* Yes and shall we take a guess as to why your CD4 has been increasing SINCE your infection?

 


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