Nutraceutical Strategies for Pharmaceutical Side Effects

[Lorenzopier]

Haart has allowed us to the ability to manage hiv and take control of our health and our lives. Most people are getting little to no side effects these days, and if so they are usually switched to a different regimen or prescribed an additional pharmaucetical to control a side effect. Unfortunately i developed a very long list of side effects. The worst being liver toxicity due to my hepatitis B. My doctor was quickly able to switch me to Truvada which brung the hepatitis B under control. Later he switched my regimen two more times in an attempt to control side effects but we were unsuccessful. Eventually i decided to use my knowledge of nutraceuticals to tackle these problems. For the first 3 or 4 months i experienced only little improvement and at times even experienced additional side effects from the nutraceuticals but i quickly learned that the key to making them work is balance, timing and staging. The important thing to always remember is to consult with your doctor or a licensed naturopathic doc to get there guidance and input before considering the use of any type of nutraceutical.   

[Jeff G]

Many of the products people buy attempting to treat or improve your health are of no benefit so please understand that these products are not studied or regulated like the meds we get from our doctors and even some of the big box stores sell useless and sometimes dangerous products . 

http://well.blogs.nytimes.com/2015/02/03/new-york-attorney-general-targets-supplements-at-major-retailers/

[Lorenzopier]

Fact is, science-based micronutrients established many decades ago in many biology textbooks as well as thousands of studies of micronutrients in very reputable medical journals are readily accessible. You are right that micronutrients still have not been regulated yet, and that is because of the Dietary Supplement Health and Education Act of 1994. 

[Jeff G]

The supplement industry has been largely discredited . I have no problem with finding safe natural solutions but until the industry is properly regulated I would hope people will avoid using these products . Its one thing to read that a supplement works and quite another to make sure that you are actually taking and getting the product you paid for .

Please understand, I am not against a holistic but the fact is the industry that delivers these products have been shown to be corrupt .   

You did not like hearing this in another thread so you started another on the same subject. Its OK to state your opinion but you must expect others like me to reply and when we do you do not have to start another thread to make your point .

[Lorenzopier]

If i were to discontinue my use of nutraceuticals based on a fear of  the industry being unregulated and the industry being discredited, then my health and quality of life would take a nose dive for sure and i am not willing to take that risk again. The only option that would be left for me is to add additional pharmaceuticals along side of HAART, which is a scary proposition for me. Issentres and Truvada although awesome are a heavy enough burden on my system. Also the other thread that your are referring to is about battling hiv naturally and because there is no way to battle hiv using nutraceuticals i saw the light and decided i was wasting my time in that thread.  This thread is about using nutraceuticals to counter the side effects of pharmaceuticals which is a whole other ballgame. 

[zach]

chalking this up to more bullshit. whats the agenda here? if people PM seeking answers, sell them some juice+ or that voodoo concoction?

[mecch]

. Also the other thread that your are referring to is about battling hiv naturally and because there is no way to battle hiv using nutraceuticals i saw the light and decided i was wasting my time in that thread.  This thread is about using nutraceuticals to counter the side effects of pharmaceuticals which is a whole other ballgame.

Whew!  So glad to hear you see why that chat in that thread was irrelevant.  By the way you were wasting our time too, not just your own.

You are getting resistance now in this thread for a few reasons:

You choose this word "nutraceutical" which is meaningless in many English-speaking countries and beyond meaningless it sounds culty, or ridiculous, or snake-oily.   Why not just say "supplements".

Second, just the other day there was a report from the NY A.G. that supplements purchased in well known and trusted national chain stain stores in the US were filled with garbage.  So people are wary.
http://www.ag.ny.gov/press-release/ag-schneiderman-asks-major-retailers-halt-sales-certain-herbal-supplements-dna-tests

We reacted to your posts because people here try to eliminate snake oil and turnaround ignorance.  Also, so many many people are afraid of ART being "toxic" and inevitable hideous "side effects" of this "toxic" treatment.  That contributes to needless fear, to delayed treatment, to non-treatment, to non-adherence. So glad that is not your case and you commit to ART and finding workarounds.

I'm sorry you had side effects from Art. I am glad you've found a way through them.  Make your information here specific about yourself.  You began in that other thread with an proselytising tone and here as well. Or, at least general, and not specific to you and with details. 

Talk more specifically about how supplements have helped you deal with side effects and who is helping you do that. Nobody is going to have a problem with that. Lots of people take supplements on this forum. Lots of people do a little alternative medical traditions here or there.  Big deal, this is not news.  Did you think it was a scoop?

What kind of supplements have helped you and how?

[leatherman]

The only option that would be left for me is to add additional pharmaceuticals along side of HAART, which is a scary proposition for me. Issentres and Truvada although awesome are a heavy enough burden on my system.

ummm, adding a supplement or adding another medication? please explain how there is a difference? If another medication/pharmaceutical (i.e. another pill) could help a side effect, what's the difference in taking s supplement (i.e. another pill).  It seems like either way you're still just taking another pill. Plus, now that the news is out about how many (most?) supplements seem to be junk anyway, it seems many supplements have probably only been working because of the placebo effect.

What is your burden with Issentress/Truvada? The medications themselves work against HIV so there is no basic "toxicity" issue, so you must be referring to side effects. For most people, as per the studies on these drugs, there are few to no long-term side effects. Switching regimens can usually help someone avoid side effects (and needing any "nutraceuticals" - and that has the extra benefit of lowering the pill burden too). I can definitely see where you should probably be a bit more specific about your individual issue.

I'm sorry to hear that through multiple regimens you have continued to deal with side effects. Were these always the same effects or different with each regimen? What problem can't you shake with Issentress/Truvada? Have you tried changing your diet or the times when you take your meds? I think if you're going to start up a thread about strategies, you really need to talk more specifics, more strategies. Instead of simply proselytizing about a nebulous theory that supplements will help with side effects, what supplement has helped you with what problem? I think if you have that kind of discussion, people will quit thinking that you are promoting supplements (which simply seem to be ground up grass and asparagus here in America ) as a miracle cure.

for example, my mom eats a small piece of candied ginger every meal to help quell nausea. (there's a "Nutraceutical Strategy for Pharmaceutical Side Effects" for ya. )  However, I would also add some caution about using ginger as when I have used it to quell my nausea (my HIV meds induce nausea probably 6-8 time a month with vomiting 2-4 times a month), I have gotten violently ill and puked up the ginger. I've tried all sorts of strategies to quit puking but to no avail. I did use to puke 30 days a month though, and switching through 2 different regimens got me to puking 4 times a month, so I've just learned to deal with the issue as it is. But it's all good! I ain't dying of the AIDS these days (like I was for a long time) and, when I'm not puking those 4 times a month, I'm healthier than I've been in years.

Certainly some supplements can help some people with deficiencies and/or to deal with some side effects; but not always. And while at times helpful with side effects, supplements still simply do nothing against the HIV.

[Lorenzopier]

Yes i see that the investigation by the Attorney General found that various herbal products either did not contain the labeled amount of herbal extract or either contained ingredients that were not listed on the label. This is indeed troublesome point blank. Out of the dozens of supplements that i use everday to counter side effects only one of them is a herbal product called Tribulus. I initially began using supplements for sports performance at the age of 16 i am now 49. In those 33 years of supplement use i have learned quite a bit. This knowledge did not just come to me. I actually have spent many thousands of hours reading, researching, experimenting, reading medical journals, supplement websites, publications, forums, bookstores, magazines etc...I still spend a lot of time still searching and never seem to get tired of searching. In the other thread i have most of my side effects listed. The doctors who i have seeked out advice from it was always ironic that i actually have more knowledge than they do pertaining to supplements.   

[Lorenzopier]

Hello Leatherman. Even with the Issentress/Truvada combo i experience fatigue, weight loss, lowered appetite, high cholesterol, depression, bone loss, lipo, decreased libido. I can understand your point that a pill is just a pill whether it is pharmacological or supplemental, and yes the supplements also have the potential to produce side effects but as long as i maintain balance with the supplements they do not produce side effects. The balancing part is the hardest to maintain during a supplement program because of the precision involved and most would probably rather deal with adding another pharmaceutical rather than having to deal with this precision issue.

[Dan0]

Out of the dozens of supplements that i use everday to counter side effects ........

No offense but I think I would be looking to my Doctor to examine side effects that create the desire or need to take 'dozens' of additional pills, powders and whatever else. If for no other reason than quality of life and not being harnessed to an endless cycle of ingestion. Initially, I thought you were speaking of one or two instances a day but 'dozens'? That seems incredibly extreme or obsessive. If I told my doctor that I had to self-medicate with this amount of herbal remedies due to side effects, I think that he would be shocked and compelled to find an alternative approach quickly.

What do you take each day? I'm curious - I can't imagine being focused enough to consume dozens of compounds, pills and whatever else and remain adherent to them without impacting my day to day existence.

[Lorenzopier]

Well Dan that is the other problem my life revolves around supplement cycles and most people would immediately find this dishearting, but because i have been doing these cycles for 3 decades now it has just become a natural thing to me. Actually it is mostly a desire for me to function and feel to the level i was before seroconversion.

[Jeff G]

Maybe many of your side effects are being caused by over supplementation ?

[Lorenzopier]

Hello Jeff i looked into that as well but when i stop supplementation the side effects are difficult to handle. I have done many treatment interuptions in the past and side effects always sudside within about one to two weeks of stopping HAART except the lipo.

[Jeff G]

Im sorry you having such a difficult time finding the right combo for yourself, I think thats really what this thread is about . Please understand why its important for us to warn others that supplementation can also be very detrimental to your health and should only be done under the supervision of your doctor .

[mecch]

Hello Leatherman. Even with the Issentress/Truvada combo i experience fatigue, weight loss, lowered appetite, high cholesterol, depression, bone loss, lipo, decreased libido.

How many of these has an MD - treating your HIV - said were caused by ART?  Has your lipo been diagnosed and monitored by a ID, for example? Or is this self-diagnosis?

Dozens?  And taking them is major component of your daily life?

Have you ever been evaluated for OCD - obsessive compulsive disorder? 

No human needs to be taking dozens of supplements a day.  I am fairly convinced something has gone off the rail with the way you see your body, its chemistry, working and staying functional, healthy enough, etc.

Dozens?  No dear.  I say this with concern, not to criticise or condescend.  You need to get off this merry go round.  Please see a therapist.

[leatherman]

there's another good lesson from this kind of thread - HIV affects different people differently because HIV works against a very distinctly unique bodily component - a person's immune system. Constant inflammation, high viral loads, low tcells, viral reservoirs, etc. all of these things create a unique problem inside each of us. It seems that your situation is just really unique. Most people can change meds or foods to mitigate many to most issues. Sadly it may be that you are too unique.

It is really troubling to read about all the side effects you have to deal with. It's nearly as troubling to read about all your attempts you have taken to mitigate those problems with meds changes and supplements.

I remember, back  in the day, when I had 32 HIV meds a day I had to take - pills, tablets, capsules and liquid tablespoons. Some were so many hrs before food and some so many hrs after food. It was crazy! (However, it was worlds better than having to take AZT every 4 hrs 24/7 because I lost a lot of sleep with that regimen LOL). I can't imagine having to still juggle dozens of pills a day here in 2015 - just to get past some side effects.

Actually it is mostly a desire for me to function and feel to the level i was before seroconversion.

ah! You've been a pozzie for 27 yrs and you're 49 - you're going to have to give up that dream, honey. LOL  I've been poz for 31 yrs and I'm turning 53 next month, trust me, at this age and living with this disease this long, there's no going back to feeling like we did before seroconversion - which oddly enough for both of us was when we were 22. LOL

So after re-reading through your posting history, I have another question. Does taking all your supplements/Nutraceuticals help YOU with your issues?

[Lorenzopier]

In order for me to manage the 13 side effects it requires me to work out of 28 supplement bottles daily. The Lipo and 8 of the side effects have been diagnosed by doctors. Leatherman you are extremely detailed and accurate with your assessments in your last post. Based on my findings the supplements counter side effects on a percentage basis.
Lipo 30%, bone loss 80%, high cholesterol 80%, depression 50%, decreased appetite 90%, weight loss 100%, lowered libido 90%, fatigue 50%, hiv inflammation 70%, neurocognitive decline 50%, eczema 70%, small intestine absorption decline 80%, anemia 50%
   

[mecch]

I admire your grit and determination to have dealt all these years with the virus as well as for figuring out so many ways to meet your various health challenges.  Are you an engineer?  I was wondering in previous posts if you might be a bit OCD, but I do know a fair number of guys in science and tech who have really structured life styles and present information about that, in similar ways to what you just expressed.  Anyway, I hope you can share some of your experiences about what supplements have helped what challenges.

[Lorenzopier]

Thanks Meech, I dont have any engineering training at all. I did take three years of vocational electronics in high school. I have always had a deep fascination with the endocrinology field since age 16. The research findings of the former science editor of Poz  Lark Lands Ph.D. was greatly instrumental in focusing my studies towards its current direction as well. I will definitely go into which supplements i use as well as how many. I just wont people to understand that i am aware that my total pill count is in a range that will be appalling, but because my side effects are so numerous i have to have numerous amounts of supplements. 

[Lorenzopier]

After doing a recount i am currently working out of 26 bottles daily and my total  pill count is 110 pills daily of which most are only 1/2 the size of a HAART pill. The following dosages are tailored to fit me specifically based on my amount of side effects from HAART and also on my bodies individual chemistry profile. Please Pay Very Close Attention Now- Under no circumstances should you attempt this type of program without the guidance of a naturopathic physician or without having acquired advanced knowledge in how to make the correct adjustments based on your own individual chemistry profile so as to avoid any potential side effects. I have put these in order of most crucial micronutrient for me to least crucial.


  Next i will cover which supplements play a primary role in controlling each of my 13 side effects.

[Jeff G]

After doing a recount i am currently working out of 26 bottles daily and my total  pill count is 110 pills daily of which most are only 1/2 the size of a HAART pill. The following dosages are tailored to fit me specifically based on my amount of side effects from HAART and also on my bodies individual chemistry profile. Please Pay Very Close Attention Now- Under no circumstances should you attempt this type of program without the guidance of a naturopathic physician or without having acquired advanced knowledge in how to make the correct adjustments based on your own individual chemistry profile so as to avoid any potential side effects. I have put these in order of most crucial micronutrient for me to least crucial.


  Next i will cover which supplements play a primary role in controlling each of my 13 side effects.

When I read your list of 110 supplements my heart kind of broke for you and I struggle as what to do with this situation . I know you strongly believe you are helping yourself but after reading your post that I severely edited I have to take a stand on this issue and say enough is enough and its not negotiable .

People come here to find factual information and your last post despite the disclaimer just went too far . One of the things I edited out was next you were going to discuss how the 110 supplements work and how they treat your conditions. 

We are a forum that deals with peer reviewed science and medicine to treat HIV so if you wish to blog about natural remedies to the extent you just tried to do then please go find another space on the internet to do it because you can not do that here .

I am locking this thread now and hope you get the help you need before that list of supplements I edited out does harm to you. I'm sorry to have to lock your thread but I do not feel it was appropriate for this forum .