The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Dollar for dollar, what is the least useful supplement?

Discussion in 'General Treatment' started by Rory_5, Sep 14, 2012.

  1. Rory_5

    Rory_5

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    I'm trying a bit of a shotgun approach, which is getting costly. I'm wondering what I should start cutting back on...

    CoQ10 is expensive and I haven't noticed a huge difference with it (though everyone has recommended it, including a doctor whose opinion I value greatly). I have other things that work well for energy levels.

    What about immune strengtheners or natural antivirals? Monolaurin doesn't seem to do much, ditto Red Marine Algae. They aren't bank-breakers but they aren't cheap, either.
     
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    LIke many supplements, you don't always feel what Coq10 is doing for your heart, immune system, nervous system etc. Since levels go down as people age it is good to make sure we have some.

    I take good immune supplements and I know they work. Many times we don't feel a difference but our body is getting the things we need. I take a large amount of supplements and have a schedule three times a day.
     
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  3. *GG*

    *GG* Senior Member

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    LDN (low dose Naltrexone) and Vitamin D are immune modulators, Vitamin D is very cheap, get the gel, not powder pills. LDN is relatively cheap and a lot of people have had help with it.

    GG
     
  4. GracieJ

    GracieJ Senior Member

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    I hear you on breaking the bank. Most of my regimen for years has been herbs, vitamins, minerals, aminos, etc. to the tune of $300-400 a month. As I had fallen through the cracks medically - both mainstream doctors as well as alternative at times - I did my own "trials" of several things, using them for months, going off, using them in synergy with other things, going off... and identifying that way what my body needed.

    What I didn't know 20 years ago would have saved me a lot of time and money:

    1. Because natural supplements work by feeding and rebuilding the body, it can take weeks or months for effects to show. The regimen I finally went on to rebuild the endocrine system took 10 months before I saw any difference. DON'T GIVE UP TOO SOON.

    2. As depleted and run-down as a body can get with an illness like ME/CFS, the dosage on the bottle is often all wrong. It can take a dose 3-5x higher to get the needed effect and can be perfectly safe to do so.

    That said -- find someone to muscle test your dosage and exactly what is needed. (Or find an office with a BioMeridian machine.) You may be able to "tag-team" your supplements, taking a course of one for a few months then resting from it as you do a round of another one, all the time knowing which ones really do need to go together to create synergy. With proper dosages, you do not have to stay on an expensive one for an extremely long time, and often with the most correct supplements for YOU a lot of other items simply are not needed. Your body is then equipped to make its own pharmacy from the food you eat.

    I am now at 75% or more of restored function using supplements. Ironically, change came when I "cut back" and went to the most basic needed items first -- but in higher doses.

    It is so individual. I would rate my own "attack" order roughly this way: #1: Sleep aids. #2: Detoxification. #3: Digestive system support. #4: Endocrine system support. #5: All other support.
     
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  5. *GG*

    *GG* Senior Member

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    Sounds like very good advice to me!

    GG

    PS Very much my path to recovery also.
     
  6. GracieJ

    GracieJ Senior Member

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    Thanks, ggingues, was editing that a little, and there were your comments! I added a couple of thoughts.
     
  7. ukxmrv

    ukxmrv Senior Member

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    Multi-vitamins (and in particular B multis) that just made me worse and worse. Injections of B12 as cyanocobalamin and the most expensive that did nothing - IVIG.

    (Q10 I do find useful but not until I tried one of the higher strength ones. Anything under 100mg had no obvious effect)

    I can't afford to pay for supplements that don't work. Swallowing so many each day just makes my digestion much worse so I need to make sure they help not hinder.

    It's going to be very individual though.
     
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  8. GracieJ

    GracieJ Senior Member

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    Monolaurin I would take hands-down blind any day over just about anything else.

    B12 is a must for ME/CFS... but has to be the right one. Cyanocobalamin is not a good form, but is cheaper, so used a lot. What do we know?? Methylcobalamin is a good one. Not sure about the other ones.

    B vitamins in general can be hard to balance, as so many formulas just do not get it in the right ratios. 3-5 lbs of healthy intestinal flora deliver the B vitamins we need, so restoring that is high priority in many ways.

    Watch for bioavailability: Some chemical combinations go straight through the body. Others are highly bioavailable. The labeling can look almost identical.

    The LEAST useful supplement? The wrong one for you.
     
  9. GhostGum

    GhostGum Senior Member

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    To really reiterate what others have already pointed out people can really expect too much from supplements, especially in the short term but it is also understandable to some degree because it can be a little overwhelming with the endless options and feeling like you are swallowing all these random unknowns all the time. Just have to keep an interest, keep reading studies, reading peoples experiences, even reading what athletes/body builders get up to and eventually become comfortable/familiar with what you know likely does do something. Like Gracie I have been cycling on and off, trying all different kinds of things since about 2005 now eventually getting into routines I like with supplements I feel very comfortable with which I have no doubt has saved me in the end, am probably at about 75% recovery as well.

    If you are on a tight budged always look for good bulk suppliers, you can even buy things like coq10 in a bulk powder I think, depending on dosage you could easily get a year supply for under $80. Using a powder with a sublingual or buccal delivery can make a big difference for absorption over capsules, depending on the substance and taste. Can always make your own capsules too, can save a lot of money and can also put substances together in the one pill, can be a lot more convenient than taking several from different branded bottles.

    The ones that are probably not worth it are those advertised by some fancy company or lab with flashy names making over the top claims with some secret patent recipe on the label. Off the top of my head I can not actually think of anything over the years that was overly expensive and not worth trying, many of the things I have ditched I actually see others using saying it helps; maybe colostrum was one that was way over priced and not worth it but even that I see some saying it is great on the immune system and helpful for different diseases/illnesses.

    At the end of the day you just have to learn about the individual substance and make your own mind up, some will simply be much more expensive than others in their basic form.
     
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  10. caledonia

    caledonia

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    You can get CoQ10 from Sam's club for a good price. It works as well as the expensive stuff. 100mg daily helps me significantly with brain fog - from a lack of concentration so horrible I could only read the titles of articles in the newspaper, to being able to read an entire large book such as Osler's Web. I could tell a difference within a few days.

    For some people, it helps with energy, but based on the formulas I've seen for mitochondria, you may also need several other complementary supplements in conjunction to feel a difference. I haven't gotten that far with my experimentation yet.

    Some people do better with another form of CoQ10 called ubiquinol.
     
  11. caledonia

    caledonia

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    Ghost Gum, can you tell us more about the bulk suppliers? I haven't heard of this before. Are there any you can recommend?

    Saving money on supplements would be awesome, although having to fill up your own pills sounds like a pain.
     
  12. GhostGum

    GhostGum Senior Member

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    Depends what country you are in but a little digging and it should not be too hard to find a supplier of cheap bulk powders, I use an Australian retailer online now myself which is not always the cheapest, just go sick of sending my money overseas and waiting for packages. Use to use ones like 1Fast400 which always had very low prices, smartpowders is another good one (well it use to be but looks like its filled with branded products now).

    With the capsules you can get kits which do 50 at a time, I am too lazy myself and just throw stuff down the hatch now, under the tongue or just throw a few things into a shake or just water.
     
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think sometimes we expect drug like effects from supplements, i suppose supps just help our body to try and run efficiently, i dont think we will find a cure as such in supplements but i think they are helpful.
    There is enough research/studies in cfs/me to show that oxidative stress is a problem for us. Other research shows that q10 as well as carnitine are low in cfs/me, also glutathione.

    When it comes to buying supps, especially us aussies, we get totally ripped off buying most stuff locally. Basically i have found supps from iherb etc to be a stronger dosage, 2-3 times larger quantity and about 1/3 to 1/2 the price. The worst rip off for us are hormones like dhea and melatonin, firstly in australia we need to see a doc for a prescription then we cant buy these from overseas even with a prescription for dhea, we need to mostly buy them from a compounding chemist eg dhea 25mg x 100 cost approx $80-100 locally, iherb sell dhea 25mg x 300! for $16. Melatonin 3mg x 30 would cost approx $50-60 locally, online <$10 probably <$5. We are just getting sucked in.
    Most supps even including postage from overseas are way cheaper then locally. It wouldnt suprise me if they rought this stuff from iherb ib bulk and just mark it up by 300%.

    Anyway, i think a basics for cfs/me would be vit c/e Q10, acetyl l carnitine, lipoic acid, NAC.
    If after something with are more immediate effect for energy i would look at acetyl tyrosine, NAD and 5htp/tryptophan for mood and/or sleep, these supps arent bullet proof but do help some. Im sure there are others.

    cheers!!!
     
  14. Rory_5

    Rory_5

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    @ Gracie, can you tell me what Monolaurin does for you?
     
  15. Esther12

    Esther12 Senior Member

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    I only take vitamin d (can't get out much) and a multi-vit. If something doesn't make you feel better, and you're only taking it to feel better, I wouldn't bother with it.
     
  16. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I agree. So many supplements, antioxidents, bio hormones, immune help, etc are needed by the body. They are needed long term. For me, I need them all to be strong and heal. They have been amazing.
     
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  17. Dreambirdie

    Dreambirdie work in progress

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    The adaptogenic herbs (eleutherococcus senticosus, schizandra, and ashwagandha--rotated) are a very necessary part of my regimen. And licorice root. My adrenals are a big issue. Whenever I stop these, I feel worse.

    Also anti-viral herb formulas, custom made by my TCM practitioner, are a must. Sometimes I add lauricidin, GSE, and black elderberry if I need them.

    Bio-identical hormones have been helpful as well. I get those prescribed by my naturopath, using a saliva test.

    Other than that: B complex, B-12 (methyl), C, K&D, lecithin, fish oil and herbs for sleep are the ones I keep around the most.
     
  18. GracieJ

    GracieJ Senior Member

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    Monolaurin kills candida. My candida story is a long one. I ended up untreated and addicted to sugar. It was horrible. I understand that combating sugar addiction is worse than getting off cigarettes. Wish I'd known about Monolaurin a long time ago.
     
  19. taniaaust1

    taniaaust1

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    I myself personally only take the things which I know are actually doing something for me. (so only take the things I know Im deficient in, the things Ive got genes which affect normal absorption of or the things in which I get symptom improvement with). Ive spent a ton of money over the years trialing things (Ive probably trialed most things) but do a ton of saving by only staying on the things which I know are helping me.

    It may be worth not buying the things which arent helping (esp if you've trialed them for a while.. thou some things one can know in a very short time if they are going to help or not) . I suggest putting that money aside to save up for some more tests of things which could better show you where your individual issues are and what you could be treating in your own case.

    We are all completely different and what others need, may not be what we need to be taking.
     
  20. SOC

    SOC

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    This is a very tough, if not impossible, question. Supplements that work wonders for some people are useless (or worse) for others. It seems to be a very individual issue.

    I don't think I can identify any supplement as definitely not worth the money. There are some I've dropped because I wasn't seeing any useful effect, while there are others I always go back to after taking a test break.

    As for CoQ-10, I don't get a sudden "wow, I feel better" response as soon as I take it. It's more that I find I'm doing more and am less tired overall when I'm taking it than when I'm not. Pretty subtle, but I'm more functional with it, so I keep taking it. I have to go up to at least 300mg daily (200mg w breakfast, 100mg with lunch) before I notice an effect, though.

    Vit C doesn't do anything obvious for me, but it's cheap and generally recommended, so I keep it on my list.
     

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