Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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How much do you spend on supplements and which are effective?

Discussion in 'General Treatment' started by drob31, Aug 12, 2015.

  1. drob31

    drob31 Senior Member

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    This is just a general question to see how much people spend on supplements. I feel like I've spent so much, and while it was worthwhile because I have found a few that have had a dramatic impact, I feel like 99% have had little to no impact. I estimate that I spend $150-$200 a month on supplements.

    Supplements that have helped:

    Iodine (12.5 mg of iodoral before adrenals couldn't increased thyroid activity--will revisit once I know I can handle it, or am using hydrocortizone)
    Pregnenolone 100 mg initially, now using 25 mg of micronized (turned the "lights" back on via raising cortisol and or increasing neurotransmitters, or increasing any other adrenal hormone, such as DHEA or progesterone)
    Desiccated adrenal gland 6-8 pills of standard process dessicated adrenal gland which contains all the adrenal hormones. Pregnenolone may have actually eventually caused a negative feedback loop, and while still helpful, needed to be lowered, and partially replaced with desiccated adrenal gland. The more the better.
    Magnesium: 600-1000 mg of magnesium glycinate at night. My serum levels were low and it's involved in 300 biochemical processes.

    Supplements that 'might' help:

    Lumbrokinase 2 caps 2x a day for excess fibrinogen which causes sticky blood and decreased oxygen delivery to peripheral tissues and the brain (thus causing brain fog).


    Other than those 4, I cannot conclusively say the other 300 plus supplements helped.
     
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  2. barbc56

    barbc56 Senior Member

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    Five dollars per month fo prescription vitamin D3.

    Barb
     
  3. Misfit Toy

    Misfit Toy Senior Member

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    I'm not sure how much I've spent. I know that vitamin D3 does nothing for me. I take 5,000 IU and feel no different.

    Magnesium helps. I was doing the shots via my tush but developed welts and stopped. The welts would take weeks to go down and that was with taurine.

    Probiotics. I would say about $50 a month right now. Medicines help me more.

    I have cabinets, boxes and closets filled with supplements.
     
  4. A.B.

    A.B. Senior Member

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    I never felt any effect from vitamin D supplements even when I was deficient according to blood tests. Getting some sun does however make a felt difference in vitality and mood.

    PS: magnesium is cheap, safe and likely to be helpful since so many people have a deficiency. 68% of adults in the US were found to have a magnesium deficiency in this study: http://www.ncbi.nlm.nih.gov/pubmed/15930481
     
    Last edited: Aug 13, 2015
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  5. leokitten

    leokitten Senior Member

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    The first couple years I was spending similar amounts maybe even $200-300 per month trying desperately to find something so I could get better but I honestly can't really tell if anything has helped. Realizing this I dropped most and spend a lot less now only take supplements that I've read on PR or literature that are important i.e. vitamins, minerals, omega 3, coq10, pqq, acetyl l-carnitine, and curcumin.

    You might have already seen but I started a thread asking a similar question, people have some good posts in this thread it's worth a look:

    http://forums.phoenixrising.me/inde...o-not-have-any-real-effect-on-symptoms.37938/

    Nothing really seems to help, the only supplement I somewhat notice is acetyl l-carnitine 1000 mg/day which has an effect reducing fatigue. But it goes away the moment you stop taking it.
     
    Last edited: Aug 13, 2015
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  6. Plum

    Plum Senior Member

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    £100-£120 per month on: Omega 3, probiotics, Now Liver Detox & Regenerator, pancreas glandular, Rainbow Light digestive enzymes.

    All help me and are of benefit.

    I have taken pretty much everything else in the past with none of it helping!
     
  7. Martial

    Martial Senior Member

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    no more then 115$ a month but its mostly spent on herbs, vitamins last longer and I buy in bulk.
     
  8. taniaaust1

    taniaaust1 Senior Member

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    When I worked out my costs years back, I was shocked when I saw that my health issues and disability actually costed me more then what I pay for my house rent. I fortunately get my manual wheelchair free (which I cant push much further then across a large house room myself) but are thinking about hiring a mobility scooter at some point if I can financially work out how that could be done.

    I cant remember now what the amount the illness costs me was but it costs me over $110 week for my medical/health needs. (its about to go up greatly more as Im also needing a food service I will be paying for some how).

    Not just for lots of supplements but also for the gaps I have to pay for my prescription drugs too (I spend on prescription drugs just under the amount one it is before one is able to get them free), disability aids, doctors gaps (if Im able to get to specialists), compression support stockings for the POTS (when I can get them), petrol to get to appointments (if Im able to get to those) etc etc.

    As I pay 25% of my disability pension to rent (and being I spend more on my disability then that), this means over 25% of my pension is going towards my disability/health costs.

    Some supplements which help me

    -are the ones I take for my MTHFR mutation (active kind of folate, methyl B12.. so they also help methylation) - more stamina on them then if I don't take them

    - selenium (without this my nails go very weak and start peeling so I must need it for general health)

    - molybdenum (for a deficiency of it.. it helps my working brain .. without it I cant do any maths in my head)

    - trace mineral lithium (though it didn't make me feel different, after it sinking further year by year for 7 years?, it took my blood tests into a good level. My blood was previously showing what some ME/CFS specialist is a sign of chronic infection re low blood cell count (just on border).

    Lithium increases white blood cells so I know it is helping by my blood tests with helping my immune system. I still though have lithium deficiency, if I got that corrected maybe then I'd notice feeling better in some way on it?.

    - I used to take Calicum for severe PMDD (PMS like times ten with mood swings) which used to help me but I have that issue now controlled by staying on an extremely low carb diet

    (It's weird.. I just noticed most of the supplements which help me are minerals ending in "um".. though magnesium doesn't help me at all).

    - I take fairly high dose D3 (and even with that I have never seen my level within normal range. It doesn't seem to help me but I keep taking that as research has shown a higher risk of cancer if your D is severely low at the range my goes if Im not on supplements.. all my family die of cancer)

    - supplements for IBS-C (without I sometimes cant go at all! and then my bowel prolapses).. eg fibre supplement or Epsom salts

    That's 8 supplements my body actually regularly needs, then I have other supplements I take only when needed and not daily eg melatonin (that is actually a prescription drug here but one in which isn't covered at all by our health system), Vit C (can help my body ward off a sore throat at times), fish oil (fish oil doesn't help my ME but I have osteroarthritis which plays up occasionally and I use it for that pain) etc

    I have 7 prescription drugs also take or take just when needed on top of the supplements. (I'm so much more screwed up if I didn't take the medications and supplements)

    I personally though I've tried a lot of them, haven't found herbal meds to be helpful for me. Im still in trial of a herb for my adrenals (one which Dr Cheney also recommends) but which so far hasn't helped (I suspect my specialist will put dose up when the time comes Im able to get to him again).
     
    Last edited: Aug 13, 2015
  9. sarah darwins

    sarah darwins I told you I was ill

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    Pretty much zero. I went through phases of trying all sorts of things, but none of them made any difference.

    I'm assuming we're making a distinction between (dietary) supplements and herbal medicines, which I haven't really tried but which many people report can be extremely effective if used knowledgeably.
     
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  10. taniaaust1

    taniaaust1 Senior Member

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    I don't know about others here when I think of supplements, I think of all natural pills be it vitamins or herbal meds. It is good that you pointed out that people may take what are supplements differently.
     
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  11. sarah darwins

    sarah darwins I told you I was ill

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    I should have written my post differently and just asked the question! I'm sure you're right — different people mean different things by "supplements".
     
  12. Misfit Toy

    Misfit Toy Senior Member

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    Yes, the sun is the answer which is why I don't love winter. Even while on vitamin D, my levels really only go up by 15 points. So, as of now...I stopped but also because I'm having nutritional status testing to see what is going on.

    Magnesium does help and I'm finding that different types work better for me. Magnesium sulphate was fogging me out even with potassium so I'm back to liquid Kal mag with Calcium which helps me to also go to the bathroom. Much needed!
     
  13. whodathunkit

    whodathunkit Senior Member

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    I spend about that. Maybe more now that my insurance just quit paying for my methylcobalamin injections. Thank you, ACA! :grumpy:

    Anyway, things that have made a noticeable difference in how I feel and in my long-term functioning, and that I will continue to take in some dosage, at least once per week in perpetuity, include:

    methylcobalamin
    adenosylcobalamin
    methylfolate
    L-carnitine fumarate
    iodine
    freeze-dried adrenal
    CoQ10 (ubiquinol or mito-q)
    variety of probiotics
    choline
    magnesium
    lycopene (effective prophylactic against sun damage, really works!)
    asthanxin (sunburn again, very effective, I live in hot sunny climate so these are must-haves for me)
    digestive aids

    Stuff that has helped me noticeably but I no longer seem to need regularly (but may still circle back to in the future if necessary) include:

    P5P
    B2 (FMN form)
    Pantethine
    thiamine (particularly sublutiamine form)
    ALCAR

    Liposomal vitamin C also made a noticeable difference in how I felt at one point,but it's expensive or a PITA to make homemade, so I bagged that. If I win the Lotto, however, it's definitely a keeper...really good for gums.

    Worth noting is that except for iodine and adrenals, none of the above ever did anything positive for me until after I'd gotten methylation going for a while. Getting that process started seemed to clear the way for other nutrients to be able to do their jobs, and I seemed to be able to correct a lot of deficiencies. P5P was a horrible experience for me before methylation, but when I added it back in after a few months on @Freddd's protocol I realized what a great supplement it could be. CoQ10 did nothing until after methylation, likewise choline, ALCAR, etc., etc.

    Stuff I take daily or weekly because it's cheap insurance include:

    selenocysteine
    Vitamin C
    Vitamin D
    copper sebacate
    zinc
    magnesium
    RALA

    That's not entirely comprehensive but it's most of it. I also have an "escrow pile" of stuff that's been tried and rejected for bad effect or no effect (but is kept because sometimes I decide to try it again), plus am experimenting with new things and rotating things in and out. I hope to settle on a much more moderate regimen in the nearer future, as my health evens out more, I reliably eat well, and deficiencies are increasingly corrected.
     
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  14. geraldt52

    geraldt52 Senior Member

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    +1. It took a long time but just not having a cabinet full of crap, that I have to look at in disgust every day, has given me a bigger boost than any supplement I ever took!
     
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  15. barbc56

    barbc56 Senior Member

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    I have been trying to get as much sunlight as possible but until this last week or so this has been a horrendously rainy/cloudy summer. I've been wearing sunglasses but am now wondering if this will hamper getting vitamin D from the sun?

    The vitamin D doesn't seem to be helping my levels. I take a low dose as I was originally given a large dose which made me sick and may have caused kidney stones but the latter may be a coincidence. It looks like I have hyperparathyroidism which can lower your vitamin D significantly. Easily fixed and hopfully will stop the kidney stones from forming.

    I did have a B12 deficiency about five years ago and had the injections until I was in the normal range.* I didn't notice any positive effects on my health but who knows as with this condition there are so many overlapping symptoms. At least my B12 levels have been normal.

    Well back to sitting in my driveway reading and changing my position with the sun. As the sun turns, so do I!:lol:

    Barb

    ETA
    *That should be my blood levels were normal, not me. I'm a Never Normal and I say that proudly! I left it the way I originally wrote it, as I need a laugh.

    Ack, I keep having to edit as auto correct changes the words and I can't disable it.
     
    Last edited: Aug 13, 2015
  16. ahmo

    ahmo Senior Member

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    Probably $200/month. Haven't tracked it recently. Last year was a year of detox, also early 2015, so lot's extra $ during that time. However, now trying new selection on antioxidants, which seem to be my biggest need now, and hopefully will settle on something that also helps keep some of the other needs under control.

    B Complex; FMN; Mfolate; MB12; AdB12
    Magnesium, selenium, zinc, molybdenum, lithium
    L-Carnitine Fumarate, ALCAR
    Ubiquinol, evening primrose, fish oil, Vit K, Vit D, E
    choline, lecithin
    Betaine HCL, ox bile
    Probiotics

    As Needed: resveratrol, astaxanthin, royal jelly,

    Pretty basic now. No longer needing: GABA, glycine, several aminos for ammonia reduction, antihistamines, several minerals
     
    Last edited: Aug 13, 2015
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  17. drob31

    drob31 Senior Member

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    Have you tried liposomal vitamin C, N-Acetyl Glutathione, or R-K-ALA for antioxidants?

    What B complex do you use? Also, what's FMN?
     
  18. drob31

    drob31 Senior Member

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    I've noticed the same thing, the sun is way better at raising D levels than supplemental D3.
     
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  19. drob31

    drob31 Senior Member

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    How much are the injections without insurance? I'm thinking of trying them. Also, I've noticed you can get your own online.

    How much iodine do you use?
     
  20. Mary

    Mary Senior Member

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    I've been spending way too much ($250 - $300) and want to cut back but have found these things to be essential:

    methylfolate (boosted energy)
    P-5-P - boosted energy
    Theanine serene - helps with sleep
    glycine - helps with sleep
    magnesium
    BCAAs & glutamine - noticeably shortened PEM
    milk thistle
    lipo C (make my own with immersion blender, it does work)
    Echinacea for sinus infection
    potassium - crucial for energy
    glandular adrenal - really helped at one time
    Seriphos - very good for normalizing cortisol
    HCL
    probiotic
    beta alanine - the jury is out on this one, it does boost energy, but seems to make me crasher easier!
    5-htp - helps with sleep
    Westhroid (Armour equivalent)

    I also take basic mineral sup, Vitamin A, D, E, lithium, evening primrose oil, B complex, pantothenic acid, zinc, selenium, inositol/choline, DMG, calcium, pregnenolone, DHEA, methylcobalamin, carnitine fumarate, taurine, lysine there's more I think - it's ridiculous

    I just ordered rhodiola rosea as I get sick way too much, hoping it will help.

    Also, just reordered CoQ10 - it's never done anything for me before but want to try it again. I read that the ubiquinone form actually can be better than ubiquinol, and is quite a bit cheaper (Dr. Sinatra), and that ubiquinol actually makes some people quite tired. So I'm going for the cheap version. The beta alanine does boost my energy but then leaves me feeling drained and I'm wondering if it is using, and hence depleting, CoQ10 as I have all the other mito bases covered. It's an experiment.

    @drob31 - I did methylcobalamin injections a few years ago. As I recall it was close to $50 for a 2 month supply ,depending on the dose. It was by prescription at a compounding pharmacy (McGuff Compounding Pharmacy in Santa Ana, CA)
     

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