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Author Topic: IMPORTANT NOTE TO ALL PPL Living with HIV  (Read 7909 times)

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Offline xtente

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IMPORTANT NOTE TO ALL PPL Living with HIV
« on: June 01, 2007, 10:04:15 am »
Last night i wrote that I was leaving this forum but I have reconsidered. I want you all to know that in addition to taking meds PLEASE PLEASE include Maitake Mushrooms in your diet. When I was OFF meds (i take breaks) I took Maitake Mushrooms and though my viral load went up, SO DID MY T-Cells. I jumped from 500 to 793 in two months. PLEASE go out and get Maitake Mushrooms. They stimulate the pituitary gland to make T-Cells.

Offline Cliff

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Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #1 on: June 01, 2007, 11:27:07 am »
Glad you reconsidered.  We all make rash judgements out of anger and hurt...so you're not alone there. 

I'm not sure what Maitake mushrooms are.  Do you have any links to studies done on these mushrooms and their effect on the immune system (I assume they must stimulate the immune system somehow)?

Offline thunter34

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  • His name is Carl.
Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #2 on: June 01, 2007, 11:48:30 am »
I'm all for shrooms.
AIDS isn't for sissies.

Offline Dachshund

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Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #3 on: June 01, 2007, 11:57:26 am »
I'm sure you would agree it is important to consult your doctor before beginning any alternative treatment. You also mentioned your VL increased after consuming Maitake. What does your doctor think about all this. I did the googles for more info on the Maitake.

The mushroom itself has been used as food for centuries and is generally presumed to be safe. So far, studies have not shown any adverse effects from Maitake D-fraction or beta glucan, BUT HUMAN STUDIES HAVE NOT YET BEEN COMPLETED. In animals studies, beta-glucans of the type from the Maitake mushrooms lowered blood sugar and should be used with CAUTION in people with hypoglycemia(low blood sugar)or those who are on medicines to reduce or control blood sugar. Beta glucans also reduced blood pressure in animals and may have a similar effect in people. Additional studies are needed to find out if these effects occur in humans.

Allergies to many type of mushrooms have been reported, including Maitake.

 

Offline David_CA

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Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #4 on: June 01, 2007, 01:46:30 pm »
I'm all for shrooms.

Same here.  They remind me of my college days.  Tim, do you remember where they used to grow here?  There's a huge shopping mall/center thing there now.
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline thunter34

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Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #5 on: June 01, 2007, 01:50:09 pm »
are you talking about the main mall off oleander or where?

besides, i was talking about nutritious and delicious mushrooms.

don't know what you might be talking about.   ::)
AIDS isn't for sissies.

Offline David_CA

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Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #6 on: June 01, 2007, 02:00:39 pm »
Oh, you mean the really healthy, low fat mushrooms?  Silly me... what was I thinking?  No, I mean down towards the beach between Oleander and Market St.

« Last Edit: June 01, 2007, 02:03:46 pm by David_NC »
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline xtente

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  • Posts: 52
Dachund.....listen
« Reply #7 on: June 01, 2007, 02:31:34 pm »
NO NO NO NO NO. you misunderstand

whenever I go OFF meds my viral goes up and my cd4's decrease. When off meds and takign mitake mushrooms, my VL went up (as it usually does when I am off meds) BUT my cd4's went UP.

People who are allergic to mushrooms should be careful, but all this dependency on doctors is BS. My doc is continually amazed that I go off meds for 4 months, go back on, get undetectable and dont get resistant. The school of medicine and the school of natural healing are often at odds, mostly because the school of medicine seeks to make money and doesnt want ppl to find out the best things in life are free. For example...a friend of mine has herpes. He was on valtrex and some cream called acyclovir. Well, he decided to stop that and go the holistic route. He takes L-Lysine and puts Honey on his blisters and now he gets an outbreak ONCE a year and using honey, it only lasts TWO days. Impressive huh!
« Last Edit: June 01, 2007, 02:33:52 pm by xtente »

Offline Dachshund

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Re: Quit Changin' The F@#king Subject Title xtente
« Reply #8 on: June 01, 2007, 02:41:38 pm »
Must be nice to have all the answers...no wonder you don't need us. By the way did you get that ADAP thingy figured out?

Offline xtente

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Re: Quit Changin' The F@#king Subject Title xtente
« Reply #9 on: June 01, 2007, 03:41:59 pm »
Must be nice to have all the answers...no wonder you don't need us. By the way did you get that ADAP thingy figured out?

Yeah I spoke with them today. My wife and I changed addresses and they were concerned. Its all good now.

Offline Miss Philicia

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Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #10 on: June 01, 2007, 03:51:06 pm »
I think we may be back to that correlation and causation thingie

At any rate why would someone advocate the intake of some odd mushroom and not provide some link about this?  It was even requested by someone here and still not provided in a follow up.  I could just as easily advocate that everyone halt all HIV meds and start licking dust off their floor because, hey... my cd4s go up.
"I’ve slept with enough men to know that I’m not gay"

Offline RapidRod

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Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #11 on: June 01, 2007, 03:57:55 pm »
I'll just stick with my meds and my doctors and leave the mushrooms for my salads.

Offline xtente

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OMG you ppl are doubting thomas' here is a link
« Reply #12 on: June 01, 2007, 04:44:00 pm »
I think we may be back to that correlation and causation thingie

At any rate why would someone advocate the intake of some odd mushroom and not provide some link about this?  It was even requested by someone here and still not provided in a follow up.  I could just as easily advocate that everyone halt all HIV meds and start licking dust off their floor because, hey... my cd4s go up.

First of all i told you from FIRST HAND EXPERIENCE that it works. If that aint a testimonial then what is. anyway, here is a link.

http://www.newyorkbuyersclub.org/resources/all-about-supplements/fact-sheets/botanicals.html

Maitake Mushroom (Grifola frondosa): Maitake is one among a number of medicinal mushrooms widely used in the treatment and prevention of cancer.
The primary actions of maitake include: increased secretion of interleukin- and 2, which in turn stimulate the body’s cancer fighting mechanisms; and increased macrophage, natural killer cell, and CD4 activity. These activities are reportedly due to maitake’s rich concentration of the immunomodulating polysaccharide beta-glucan.

According to Dr. Hiroaki Nanba, a Japanese researcher who discovered this fraction in maitake, the mushroom works in four ways to help in the treatment and prevention of cancer:

1. Protecting healthy cells from becoming cancerous
2. Inhibiting the spread of cancer
3. Inhibiting tumor growth
4. Lessening side effects associated with chemotherapy

A limited number of clinical reports showing positive effects used a variety of dosages including a low of 25 mg and a high of 150 mg of beta-glucan fraction. Some of the cases included an additional 6 g of maitake fruiting body. A standard dose has been recommended as 1 mg of beta-glucan fraction per kilo of body weight (approximately 70 mg for average male adult weight).
« Last Edit: June 01, 2007, 04:46:03 pm by xtente »

Offline RapidRod

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Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #13 on: June 01, 2007, 05:04:06 pm »
I always like this:     
DISCLAIMER: These statements have not been evaluated by the Food and Drug Administration. These products are not intended to diagnose, treat, cure, or prevent any disease.

Offline Dachshund

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Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #14 on: June 01, 2007, 05:11:06 pm »
I always like this:     
DISCLAIMER: These statements have not been evaluated by the Food and Drug Administration. These products are not intended to diagnose, treat, cure, or prevent any disease.


But you got a testimonial. ;)

Offline Miss Philicia

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Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #15 on: June 01, 2007, 05:11:40 pm »
First of all i told you from FIRST HAND EXPERIENCE that it works. If that aint a testimonial then what is. anyway, here is a link.

Anecdotal /= data (hence my comment about eating dust off the floor... it's really not a difficult concept to grasp, even more so on the internet)


Thanks for the link.  Having lived with HIV for 15 years and having spent the first 5 years consuming all sorts of odd natural remedies such as what you suggest and seeing no way to effectively ascertain whether it's doing what is claimed or if it's simply mere coincidence I remain very skeptical about all such claims without  hard data, and I don't see any hard data with your link, but I do see a lot of assertions.  Where are the clinical studies, or am I missing that section in your link?

If it works for you, or rather you believe it works, than that's grand.  In the future as a simple courtesy for your fellow travelers in the HIV world you might want to consider providing links to such information at the beginning of an informative thread. 

Oh, and by the way your link also makes the case in bold that this should be used  IN ADDITION to "direct therapies for the reduction of viral loads and improvement of immune deficiency syndromes" so NO they're not really advocating going of HIV meds like you're doing and just taking mushrooms.
"I’ve slept with enough men to know that I’m not gay"

Offline bear60

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Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #16 on: June 01, 2007, 05:12:14 pm »
What a dump.   quote Bette Davis
Poz Bear Type in Philadelphia

Offline xyahka

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Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #17 on: June 02, 2007, 12:03:38 am »
Xtente, i am not sure how long you have been poz. Although i think there is something you have to realise. Here there are people with different times taking meds or being poz, plus different ideas and conceptions about conventional and alternative medicine.

I know, and i am sure you know there are lot of theories about practices to improve the health of someone living with hiv/aids... but some of them are risky, and off course once people are in meds it is a higher risk for them to stop meds and go trying something might or might not work. not all of us can skip meds and then go back and being undetectable, so i think stopping meds is not an advice to give to anyone.

About the mushrooms, i think we all appreciate your first hand experience, but again... it applies to your specific case, it might not work the same for others, that's why guys are asking you a link for some scientific site on internet where explicit information about researches and approval for the use of this muschroom have been stated. As i told you, we all come from different backgrounds but we have stablished scientific sites (not good sites... but scientific CDC, UNaids, red cross and so on) as a reliable source of information.

Hope you put the comments of the guys in perspective, and understand our way of thinking.

glad to have you around.

Juan Carlos
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline Andy Velez

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Re: IMPORTANT NOTE TO ALL PPL Living with HIV
« Reply #18 on: June 02, 2007, 12:34:41 pm »
X, I appreciate your good intentions in recommending mushroom use.

However, all you can do is talk about how you see it from your own personal experience. Recommending something for everyone to use which has not been scientifically studied and documented is unreliable at best and potentially problematic at worst.

Flat out recommending it for everyone and anyone who's interested in what you've suggested is risky business.  I recommend exploring for further information as well a conversation with their doctor about it before doing anything. All we are is a bag of chemistry and bringing anything new into the mix ought to be done carefully.

As I think many can attest to, seemingly innocent and promising changes in substances taken in can sometimes have very serious side effects.

 
« Last Edit: June 02, 2007, 12:36:50 pm by Andy Velez »
Andy Velez

 


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