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Author Topic: My list and a question about one of them  (Read 9225 times)

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Offline Okealyshire

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  • Posts: 139
My list and a question about one of them
« on: April 21, 2008, 08:00:27 PM »
Good day all. I'm new here. Got infected about five years ago and started HAART last November. Doc put me on Truvada/Reyataz/Norvir, which I'm tolerating very well with no side effects. VL is undetectable, CD4 around 350.

I've learned a lot about HIV from countless hours of reading. Honestly, it's been a bit fun to learn something in so much detail (weird, no?). How nutrition affects the disease is especially interesting. I've seriously improved my diet, that's for sure. Alas, I fell into the supplement trap, and spent way too much time scrounging for any bit of info I could find, sat for hours comparing ingredients in various vitamins, swallowed a bunch of herbs, and whatnot. Then I realized that as healthy as the HAART and diet keep me, all that extra stuff probably wasn't doing much.

So I've narrowed it down to these, and why:

* Mega multi-vitamin/mineral
   - all-around good thing to do
   - it's got extra selenium, but I doubt the claims made of it
* Additional calcium/magnesium
   - counteract possible bone loss from the tenofovir
* Combined fish oil and CoQ10
   - can't stand to eat fish, but health benefits seem obvious
* Combined alpha lipoic acid and acetyl-L-carnitine
   - some evidence for glutathione boost from ALA
   - some evidence for cell protection from ALC and CoQ10
* Acidophilus
   - ...?

I look for scientific evidence before I do just about anything. My friend even jokes that I have no beliefs -- which I suppose is true, since "belief" means considering something to be true without evidence. Heh. Anywayz...the one thing in my list that maybe reveals a bit of belief is the acidophilus. I've read that HIV hides in the gut and evades HAART. If one would add extra good bacteria to the gut using acidophilus, wouldn't that crowd HIV out of the neighborbood, so to speak?

Thing is, I can't find any research to support this notion. So while it seems logical (believable?), I'm waffling whether the acidophilous is truly beneficial.

Would love to hear your thoughts about this. And if you've got comments on my overall selection, feel free to throw 'em in, too. Looking forward to joining your community here.


Offline BlueMoon

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Re: My list and a question about one of them
« Reply #2 on: April 22, 2008, 02:44:57 AM »
Hello, and welcome to the forum.  I'm on the same regimen as you, for two months now, and it's working well so far.

I also try to maintain a healthy diet.  I adopted it six years ago, so that was one change that I didn't have to make when I was diagnosed in October.  I've looked into supplements but so far haven't begun any, except for the multivitamin which I was already taking.  

I've considered fish oil in the past, but I do have fish about once a week.  Calcium and magnesium might be a good idea eventually.  I'll have to ask my doctor about that when I see him again in June.  I have a pint of milk and usually a cup of yogurt (all fat-free) daily, as a source of calcium and also probiotics.  

Ok, so that's probably not much useful info there but it's all I've got for now.  I hope meds and diet continue to work for you (and me!).      
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline risred1

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Re: My list and a question about one of them
« Reply #3 on: April 22, 2008, 08:28:56 AM »
First the Multi with Selenium, I'm not sure what "extra" Selenium is. You should not take more than 200 mcg per day.

When Considering Calcium, one should make sure that they are not deficient in Vitamin D. If you get direct sunlight on your skin on a regular basis, you may not have any issues regarding D. However, I will supplement Vitamin D in the Winter Months to 1200 I.U. per day.

Fish Oil Supplement. The key ingredient is DHA or Omega 3 fatty acids. DHA is also abundant in Flax seed and Walnuts. I make the point of eating oatmeal and a half cup of Walnuts every day. There primary evidence regarding Omega 3 has to do with Getting your Triglycerides down, which is one of those numbers doctors are aware, tend to increase dramatically when on a PI regimen. While Reyataz dose not seem to share this property with Kaletra, the low dose Norvir may. You're blood test would show if you having a triglyceride issue. There is much discussion and hype going on with Omega 3 fatty acids, but what seems obvious may in fact be perhaps overstated. The primary focus of discussions regarding Omega 3 is cardio vascular, and of course there are concerns that HIV meds can increase issues in this area.

Q-10. K-PAX formula removed this component because there was insufficient evidence that Q-10 had any impact on HIV. However, from a metabolic standpoint, Q-10 is supposed to be a key enzyme that is supposed to help ones mitochondria perform well. It was touted as one of those anti aging supplements, because as one ages, production drops in the body.

Acidophilus - If you are having bouts with Diarrhea as a results of HIV and/or meds, the bacteria may help your digestive track perform better and recover more quickly from this. In fact a comprehensive digestive "program" might be in order to improve function in this area, to recover and control diarrhea. A healthy digestive track is important as leaky gut can be a result of of a long term infection with HIV. But the initial indicators of a "problem" with HIV is a chronic state of diarrhea. We need digestive bacteria to help us digest food and maintain a healthy intestinal track, and reflowering or supplementing with Acidophilus or Bifidous can provide help. I'm not aware that there is any evidence that a well performing digestive track will "crowd" out HIV, however, a healthy performing digestive track has its own benefits and in dealing with other potential conditions.

A good central place to look at what supplements are in use for what with supporting links to the studies supporting these conclusions can be found at:

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

And, you should absolutely discuss this with your doctor, as I'm not one. Nor am I a nutritionist. The opinions I've stated are my conclusions from doing the same as you, seeking information about supplements from various sources on the internet.


« Last Edit: April 22, 2008, 08:36:04 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 Dachshund

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Re: My list and a question about one of them
« Reply #4 on: April 22, 2008, 09:04:36 AM »
You'll need to discuss any supplements you might decide to take with your doctor. Hopefully they have a licensed pharmacist (for want of a better word) on staff that can discuss dosing and harmful drug interactions with you. Someone well versed in aids meds. Even a trained, licensed, nutritionist can be lacking in knowledge when it comes to HIV. As for the trouble you're having finding scientific proof concerning supplements, well to be honest there ain't none out there.

You'll notice that the vast majority of information posted in the Nutrition Forum is anecdotal. Please remember that before you part with too much of your hard earned money for dung beetle tea.

You seem to have a good head on your shoulders. My only bit of advice is to not obsess about the numbers game. Don't lock yourself into one forum, emotional health might be just as important as diet. Check out the rest of AIDSMEDS while you're here.

Oh by the way a decent diet, an over the counter multivitamin and me and my virus have been upward and onward for over twenty years.

Welcome,
Hal

Offline BT65

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Re: My list and a question about one of them
« Reply #5 on: April 22, 2008, 09:22:13 AM »
Oke, first, welcome to the forums.

I used to have a shoe box full of supplements, and they didn't do anything for me.  I'm not saying you shouldn't take any of them; I second what Hal said about talking to your doctor and a pharmacist who's familiar with HIV meds etc.

There aren't scientific studies to back up anything about supplements.  To me, there's only opinions.  That's one reason why I don't rush to the store and buy any.  I've been diagnosed with HIV since 1989 and I do well without spending tons of money on these.

Good luck with what you decide to do and I do hope to hear more from you.
   Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline madbrain

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    • My personal site
Re: My list and a question about one of them
« Reply #6 on: April 22, 2008, 10:01:23 PM »
Betty,

There aren't scientific studies to back up anything about supplements.  To me, there's only opinions.  That's one reason why I don't rush to the store and buy any.  I've been diagnosed with HIV since 1989 and I do well without spending tons of money on these.

You are free to believe whatever you want, but there are many studies and a lot of them have been cited around here in many threads by myself, risred1, lorenzopier, to just name a few. There should certainly be more, and larger studies, though.

Offline Okealyshire

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  • Posts: 139
Re: My list and a question about one of them
« Reply #7 on: April 23, 2008, 12:52:58 AM »
Thanks for the welcome, everyone.

I wrote "extra selenium" because it seems uncommon to find a multivitamin with more than a small amount; the one I'm using has 200mcg. The separate Ca+Mg has additional D (combined total 1200mg). The fish oil has DHA and EPA. And the other day I had some walnuts for the first time in years -- forgot how good they really are. Crunch crunch.

Saw the blurb about kids on probiotics a couple weeks ago. Hope someone extends the study to adults. I've read a lot of the info at NYBC; alas, the "acidophilus" and "probiotics" entries in the list on that page don't have links.

You're all absolutely correct, verifying with doc is on the agenda. When I first started treatment I asked him about supplements and herbs, and other than warning against St. John's wort, he didn't seem to worry about anything else or have any recommendations. When I asked him about possible drug/herb interactions especially with the Norvir, he replied that documented interactions involve high doses -- the low 100mg booster dose hardly has a problem.

Curious thing about the available research in general... what little I've found almost always employs subjects who aren't on HAART. Makes me wonder whether people on HAART need anything else at all. The dearth of HAART-plus-supplement studies certainly can be interpreted that way, eh? Indeed, the plural of anecdote is not data.

Dachshund, thanks. Emotionally I'm doing pretty well -- better than I initially expected. It's easy to fall into the numbers rat hole, yep. Many of the forums here look interesting, I'll be sure to peruse them and contribute where I can.
« Last Edit: April 23, 2008, 01:06:22 AM by Okealyshire »

Offline rondrond

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  • Posts: 1,712
Re: My list and a question about one of them
« Reply #8 on: April 23, 2008, 06:27:19 AM »
Hey, welcome to the forum. I am by no means an expert and can only ofer what I have used for over 15 years now.,
Probiotic mult vitamin
Vitamin C
B Complex
Vitamin E
Omega 3 Fish Oil
Alpha Lipoic Acid
Nac

These are my basics and I have come to these for some reason or another, usually based on something I read on the internet. I can't justify them in any way. Many of them were started for the benefit of my sister, who had cracks on her feet and around her cuticles that no amount of lotion or vaseline would alleve. All I know is after starting the fish oil, E, the cracks disappeared. (word)

anyway,
welcome to the forum
ronnie
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline Dachshund

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  • Posts: 5,941
Re: My list and a question about one of them
« Reply #9 on: April 23, 2008, 07:15:32 AM »

Offline risred1

  • Member
  • Posts: 419
  • My Source for Supps - www.newyorkbuyersclub.org
Re: My list and a question about one of them
« Reply #10 on: April 23, 2008, 08:30:45 AM »
It is a very good question to ask about HAART and Supplements. If one is suppressing the virus, what would the supplements be for then?

Clearly the front line Meds are improving in tolerability. It is not unusual to here comments from those on Atripla or Reyataz or Truvada who are having few if any side effects. It is not an absolute, however, as many asking on these forums will attest.

I take supplements to hopefully buy time before I will go on meds. For me, I'm not trying to suppress the virus with the supplements, which would be overreaching on the power of supplements, I am trying to make sure my body has what it needs to fight the virus, and I'm trying to boost my CD4 counts.

But my view is that I will continue to supplement as the game changes post HART, to attempt to counteract affects of toxicity issues even with the improved medications.

Metabolic, Inflammatory and Digestive effects are well documented issues associated with HAART, so more and some less. And CD4 recovery is alway an issue on these forums after HAART begins.

Some supplements have been studied for their ability to provide relief of PN. Peripheral Neuropathy. (ALC, ALA)

Some supplements are being thought of as recovery aids after intensive cancer therapies and may provide assistance to the body in dealing with HAART. ECGC (Green Tea Supplement, Astragalus).

Some supplements might provide assistance for dealing with mitochondrial toxicity issues, and improve ones energy levels. (ALC, ALA, NAC, Glutamine).

And digestive issues can be addressed with Glutamine, Probiotics (Yogurt), Fiber, and Electrolyte (SALTS) supplementation.

The usual disclaimers apply to discussing issues with your doctor first. Digestive issues are common and treatable, but its important to make sure its not just the meds. Fatigue can be the result of other viral infections or conditions that are not necessarily related to the Drugs or HIV. PN is a common complaint, and a serious one. There are medications to treat this condition now and studies taking place. But it is not unusual to occasionally hear about doctors who will recommend some supplements to help deal with these conditions. But that seems to be the exception than the rule. Certainly one would need to discuss any proposed supplementation plan pre or post HART. Your Doctor should be monitoring your, if any, progress as well as looking at your blood work pre and post HART.

This of course is my opinion, I am not a doctor or nutritionist.
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: My list and a question about one of them
« Reply #11 on: April 23, 2008, 08:58:41 AM »
When I first started treatment I asked him about supplements and herbs, and other than warning against St. John's wort, he didn't seem to worry about anything else or have any recommendations.

He had no recommendations because, again, there are not scientific studies backed by the FDA that have been done or can prove anything.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online Miss Philicia

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Re: My list and a question about one of them
« Reply #12 on: April 23, 2008, 09:17:32 AM »
Okealyshire: Like you I take a Norvir booster and Truvada.  My doctor recommends taking a multi-vitamin (I'm not obsessive over what kind, and I've taken one for the 15 years I've been on HIV meds), Omega-3 fish oil (I was on Kaletra for 5 years so it elevated my lipid panel, but not so bad that I had to go on a prescription or anything like some people) and calcium supplement (yes, this is a preventive measure for the bone mineral density issue (osteopenia)ówhich can lead to osteoporosis -- found in some recent studies about Truvada).  I also take Pancrecarb which is a natural digestive enzyme, which allows for better GI functioning, absorption, less diarrhea, less bloating, etc.

Personally, I take a "less is more" approach to the issue of supplements.  During my early HIV years post diagnosis I used to load up on hundreds of dollars worth of supplements... everything from tumeric, shark cartiledge and blue green algae to some weird stuff made from boxwood shrubs in France.  All I will say is that over 15 years of seeing what's "in" for the HIV community and the supplement-obsessive crowd it all changes every 4-5 years, and like you said there seem to be little to no studies having to do with people on HAART.  What's worse -- do you want to start taking something only to find out (like everyone did with St John's Wart a decade ago) that we should never have been taking it?

It's fine for people on the board that are NOT on HAART to make recommendations for others not on HAART, as there are no possible drug interactions.  If you are on HAART it's obviously prudent to talk to your doctor about this, and not some random person on the internet who has a degree in Teh Googles.
« Last Edit: April 23, 2008, 09:19:27 AM by philly267 »
"Iíve slept with enough men to know that Iím not gay"

Offline Lorenzopier

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Offline Dachshund

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Re: My list and a question about one of them
« Reply #14 on: April 23, 2008, 12:18:10 PM »
http://jia.sagepub.com/cgi/content/abstract/3/4/121

Guess what else works, switching from Kaletra to Prezista which I'm not sure was being even perscribed during that 2004 study. I was one of the unfortunate that didn't fall into the 36% success rate after giving probiotics a try to help with the poopies. Amazingly my diarrhea vanished withen 24 hrs of dropping Kaletra. I do believe probiotics can be useful in a healthy diet, however no matter how much yogurt you slug down it ain't going to change this:

Results: Weight, CD4 count, and HIV RNA were unchanged in both groups.   

Offline denb45

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Re: My list and a question about one of them
« Reply #15 on: April 23, 2008, 08:46:59 PM »
Guess what else works, switching from Kaletra to Prezista which I'm not sure was being even perscribed during that 2004 study. I was one of the unfortunate that didn't fall into the 36% success rate after giving probiotics a try to help with the poopies. Amazingly my diarrhea vanished withen 24 hrs of dropping Kaletra. I do believe probiotics can be useful in a healthy diet, however no matter how much yogurt you slug down it ain't going to change this:

Results: Weight, CD4 count, and HIV RNA were unchanged in both groups.   

TUMS works wonders, my doctor told me that I can eat as many as I could stand, and that the TUMS won't hurt me in any way GREAT for DIARRHEA
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline bear60

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Re: My list and a question about one of them
« Reply #16 on: April 24, 2008, 02:48:35 PM »
As with any medicinal treatment, there are potential problems or side effects with TUMS.
I find it difficult to believe that your doctor would tell you that unlimited use of Tums is ok.
See this:
Do not take calcium carbonate or antacids containing calcium without first talking to your doctor if you take other medications. Calcium can decrease the effects of many other medicines by binding to them or by changing the acidity of the stomach or the urine. Take calcium with meals to increase its absorption by the body, unless otherwise directed by your doctor.
Tums (calcium carbonate) side effects
Stop taking calcium carbonate and seek emergency medical attention if you experience a rare allergic reaction (difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives).
Other, less serious side effects may be more likely to occur. Continue to take calcium carbonate and notify your doctor if you experience

nausea or vomiting;

decreased appetite;

constipation;

dry mouth or increased thirst; or

increased urination.

Side effects other than those listed here may also occur. Talk to your doctor about any side effect that seems unusual or that is especially bothersome.


What other drugs will affect Tums (calcium carbonate)?
Before taking calcium carbonate, tell your doctor if you are taking

digoxin (Lanoxin, Lanoxicaps);

antacids containing calcium or aluminum;

another calcium supplement;

calcitriol (Rocaltrol) or vitamin D supplements; or

a tetracycline antibiotic such as tetracycline (Sumycin, Achromycin V, and others), demeclocycline (Declomycin), doxycycline (Vibramycin, Monodox, Doxy, and others), minocycline (Minocin, Dynacin, and others), or oxytetracycline (Terramycin, and others).

You may not be able to take calcium carbonate, or you may require a dosage adjustment or special monitoring during treatment if you are taking any of the medicines listed above.

Drugs other than those listed here may also interact with calcium carbonate. Talk to your doctor and pharmacist before taking any other prescription or over-the-counter medicines, including vitamins, minerals, and herbal products.

http://www.drugs.com/mtm/tums.html
Poz Bear Type in Philadelphia

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: My list and a question about one of them
« Reply #17 on: April 24, 2008, 05:13:27 PM »
As with any medicinal treatment, there are potential problems or side effects with TUMS.
I find it difficult to believe that your doctor would tell you that unlimited use of Tums is ok.
See this:
Do not take calcium carbonate or antacids containing calcium without first talking to your doctor if you take other medications. Calcium can decrease the effects of many other medicines by binding to them or by changing the acidity of the stomach or the urine. Take calcium with meals to increase its absorption by the body, unless otherwise directed by your doctor.
Tums (calcium carbonate) side effects
Stop taking calcium carbonate and seek emergency medical attention if you experience a rare allergic reaction (difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives).
Other, less serious side effects may be more likely to occur. Continue to take calcium carbonate and notify your doctor if you experience

nausea or vomiting;

decreased appetite;

constipation;

dry mouth or increased thirst; or

increased urination.

Side effects other than those listed here may also occur. Talk to your doctor about any side effect that seems unusual or that is especially bothersome.


What other drugs will affect Tums (calcium carbonate)?
Before taking calcium carbonate, tell your doctor if you are taking

digoxin (Lanoxin, Lanoxicaps);

antacids containing calcium or aluminum;

another calcium supplement;

calcitriol (Rocaltrol) or vitamin D supplements; or

a tetracycline antibiotic such as tetracycline (Sumycin, Achromycin V, and others), demeclocycline (Declomycin), doxycycline (Vibramycin, Monodox, Doxy, and others), minocycline (Minocin, Dynacin, and others), or oxytetracycline (Terramycin, and others).

You may not be able to take calcium carbonate, or you may require a dosage adjustment or special monitoring during treatment if you are taking any of the medicines listed above.

Drugs other than those listed here may also interact with calcium carbonate. Talk to your doctor and pharmacist before taking any other prescription or over-the-counter medicines, including vitamins, minerals, and herbal products.

http://www.drugs.com/mtm/tums.html


I don't put to much wieght in what most doctors tell me, after 22 yrs of having HIV, I had many many doctors too many to count, some of them or good, and some of them are not so good......... I have proved most of them WRONG, after all ,I'm still here and STILL ALIVE....so what do they really know? I also take RANITDINE (it's ZANTAC 150) twice a day, seems to work, but I still get the hershey running squirts tho, I think my BIG problem is the Norvir ( I take 4 a day) but, untill they come out with a NEW PI, not many options for me right now (I have resistance to most all of the PI's)............Here's my current MEDS:

APTIVUS 2 twice a day= 4
NORVIR  2 tiwice a day = 4
Truvavda 1 once a day = 1
Isentress 1 twice a day= 2

Accupril 1 once a day= 1
Omega-3 fatty acids twice a day =2
Tricor 1 once a day =2

Lopermide 2 tiwice a day =2 (FOR THE HERSHEY RUNNING SQUIRTS)
RANITDINE 2 tiwice a day = 2 (for the stomach acid issues)
TUMS (for the stomach acid issues)
« Last Edit: April 24, 2008, 06:04:09 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Okealyshire

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Re: My list and a question about one of them
« Reply #18 on: April 25, 2008, 10:55:55 PM »
Saw doc today. Discussed several points of interest.

Supplements. Even the ALA, ALC, and CoQ10 really aren't supported by well-designed studies with control arms, and tenofovir-induced bone loss hasn't been sufficiently demonstrated. So it's down to three for me now: multi-vitamin, fish oil, and acidophilus (that last item because I've noticed the words consistency and regularity have lately regained their meanings for me, heh). All those other pills went for a noisy circular swim the moment I returned home this afternoon. (Milk thistle garnered a caution -- while it's believed to "support" the liver, he's seen cases where elevated liver function tests are directly attributable to the herb. Interesting.)

Immunizations. I had accumulated this list of about a dozen vaccines various readings indicated would be wise  for us HIV-ers. Turns out most are unnecessary for those responding well to HAART. While I do travel regularly to exotic locales such as India, China, Indonesia, and thereabouts, and even drink the local vermin-infested tap water and thrive on the scrumptious grub served up by shady street vendors*, doc ruled out most of my list! He had one question for me: "When you go there, do you have regular contact with small children or work for some program digging wells in the ground?" "Nope, I rarely see the outside of the hotel conference room," I replied. So today's adventure included only an updated tetanaus/diptheria/pertussis jab and the first of two hepatitis A shots. He saved pneumonia for when my CD4 count bumps up close to 500.

Adherence. Because of the travel, it's happened that I've delayed occasional doses by as much as eight or nine hours. Not a problem with Truvada/Reyataz/Norvir, he says, because they'll stay active against HIV for about 36 hours in most people. Nice to have that 12-hour cushion.

I wondered aloud whether I asked him too many questions about all my research. He replied that of all his patients, I'm the one he worries least about. Kind of a nice way to end the visit, and I walked out with a smile.


*Don't be leery of this stuff: it's wonderful. After all, the vendors have a vested interest in not killing their customers, you know. ;D
« Last Edit: April 25, 2008, 11:00:50 PM by Okealyshire »

Offline Winiroo

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Re: My list and a question about one of them
« Reply #19 on: April 25, 2008, 11:23:16 PM »
If I remember correctly there are some herbal supplements persons taking HIV meds should not take.

Cant remember any of them right now but I bet someone on here will.

Offline Matty the Damned

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Re: My list and a question about one of them
« Reply #20 on: April 26, 2008, 02:35:54 AM »
St Johns Wort and garlic tablets/capsules are a no-no for those on meds.

Echinacea is a no-no for all pozzies at all times.

MtD

Offline Winiroo

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Re: My list and a question about one of them
« Reply #21 on: April 26, 2008, 12:27:30 PM »
Thanks Matty.

Offline shadowfluid

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Re: My list and a question about one of them
« Reply #22 on: April 26, 2008, 02:32:20 PM »
St Johns Wort and garlic tablets/capsules are a no-no for those on meds.

Echinacea is a no-no for all pozzies at all times.

MtD

What about wormwood and snake eye? *conjuring up a black magical spell*
Jan 08       321/23%  VL 92,000 (very mild shingles)
Feb 1 08    Start Truvada+Viramune
March 08    470/33%  VL 320
mid-May     Start Reyataz/Norvir/Truvada
June 08      571/ 40%     VL   80
August 08   585/ 33%     VL >50
Nov  Lab error!!!!!!!!wah.
Jan 09        535      Undetectable
March 11     756

Offline J.R.E.

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Re: My list and a question about one of them
« Reply #23 on: April 26, 2008, 04:34:30 PM »
St Johns Wort and garlic tablets/capsules are a no-no for those on meds.

Echinacea is a no-no for all pozzies at all times.

MtD


Just to add a little more info regarding garlic ;

http://www.thebody.com/content/art1866.html


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



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

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

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

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

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


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

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline madbrain

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Re: My list and a question about one of them
« Reply #24 on: April 28, 2008, 04:50:31 AM »
St Johns Wort and garlic tablets/capsules are a no-no for those on meds.

Echinacea is a no-no for all pozzies at all times.

MtD

Well, it's not exactly as clear-cut as you make it sound .
http://www.thebody.com/content/art6034.html

Unfortunately, on this one, there haven't been any studies in people with HIV. So I would the say the jury is out.
FWIW ... I don't take it . But I keep an open mind about supplements.

Offline madbrain

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Re: My list and a question about one of them
« Reply #25 on: April 28, 2008, 05:11:31 AM »
Hi,

Saw doc today. Discussed several points of interest.

Supplements. Even the ALA, ALC, and CoQ10 really aren't supported by well-designed studies with control arms, and tenofovir-induced bone loss hasn't been sufficiently demonstrated. So it's down to three for me now: multi-vitamin, fish oil, and acidophilus (that last item because I've noticed the words consistency and regularity have lately regained their meanings for me, heh). All those other pills went for a noisy circular swim the moment I returned home this afternoon. (Milk thistle garnered a caution -- while it's believed to "support" the liver, he's seen cases where elevated liver function tests are directly attributable to the herb. Interesting.)


I think most doctors are in agreement that a multi is a good idea at this point for us pozizes.

I take fish oil too - omega-3, and a probiotics as well.

On the ALA and ALC, I read enough about them to be convinced to take them. The studies may not be large, but there have been some. On the Coq10 I wasn't really convinced either, though I did try it a few months last year.

http://www.know.aids.org/atn/a-268-02.html
http://www.ingentaconnect.com/content/ap/im/1999/00000092/00000001/art04727
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=8736490&dopt=Citation


Offline Matty the Damned

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Re: My list and a question about one of them
« Reply #26 on: April 28, 2008, 11:41:22 PM »
Well, it's not exactly as clear-cut as you make it sound .
http://www.thebody.com/content/art6034.html

Unfortunately, on this one, there haven't been any studies in people with HIV. So I would the say the jury is out.
FWIW ... I don't take it . But I keep an open mind about supplements.


Listen honey, you're gonna have to do better than The Body as a reputable source.  ::)

MtD

Offline madbrain

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Re: My list and a question about one of them
« Reply #27 on: April 29, 2008, 05:48:25 AM »
Well, it's not exactly as clear-cut as you make it sound .
http://www.thebody.com/content/art6034.html

Unfortunately, on this one, there haven't been any studies in people with HIV. So I would the say the jury is out.
FWIW ... I don't take it . But I keep an open mind about supplements.


Listen honey, you're gonna have to do better than The Body as a reputable source.  ::)

MtD

I'm not sure how to take this. Are they disreputable somehow ? Thebody is one of the few site that my doctor sent me to the day I turned poz and wanted more information than they could provide during the visit.

What was the source for your statement ? I didn't see one.

Offline Matty the Damned

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Re: My list and a question about one of them
« Reply #28 on: April 29, 2008, 06:44:42 PM »
On echinacea and for the purposes of this thread, my sources are three-fold.

Firstly the Journal of the Institute of Immunopharmacology flagged potential problems with echinacea back in 1997. It's cited here on the website of the Canadian AIDS Treatment Info Exchange.

So there's some historical perspective.

More recently the Australasian Society of Clinical Immunology and Allergy talks generally about problems with echinacea and gives a nod to the idea that it's problematic for HIV positive people, but notes that position is not universally held.

Thirdly I go on the advice of my HIV specialist and my pharmacist who both advise that taking echinacea is Not A Good Idea for poz bodz. The potential benefits for anyone from taking such a substance is questionable, and the added complications for HIV positive people make it something to avoid.

I (and others as well) have long had a problem with the way The Body does it's work. My personal view is that The Body is a less than optimal place for HIV/AIDS information, be it in treatment or prevention terms.

MtD

Offline Ann

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Re: My list and a question about one of them
« Reply #29 on: April 29, 2008, 07:08:47 PM »
My hiv doc is primarily an hiv pharmacologist involved in research. When I was first diagnosed, I said I was thinking about taking echinacea - he started jumping up and down on top of his desk, shouting "NO! NO! NO! Stay away from that stuff!"

Well, he didn't exactly do that; he gave me some long-winded explanation of why it wasn't a good idea for poz people to take it. I don't remember the details, but the take-home message was definitely NO! I'm not in the habit of second-guessing the Wizard of Poz. ;)

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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