Viewing 18 posts - 1 through 18 (of 18 total)
  • #73832
    Vitamins, Supplements and Snake Oils.

    Now I have been offered everything from magic pills to faith healing. Only thing I take on a regular basis is vitamins. Not convinced they make a huge difference but I have no way of knowing if they slow down the progression. I figure I have nothing to lose. I do not endorse these products but I would be interested in hearing if anyone else takes anything similar.
    This is my stack:

    Core:
    Lecithin 1360mg
    Co-Enzyme Q10 200mg
    Vitamin E 1000ui
    Selenium 200ug

    Rotational:
    EgCg(Green tea extract) 400mg
    Creatine 3000mg
    L-glutamine 500mg

    Additional other:
    Phosphatidyl Serine 100mg
    Reishi Mushroom spores N/a
    Vitamin C 500mg
    Iron Complex 15mg
    Wheatgerm oil 1140mg
    Flaxseed Oil 1000mg

    Currently researching:
    beta-Hydroxy beta-methylbutyric acid (HMB)
    N-acetyl-Cysteine (NAC)
    Trimethylglycine (TMG)
    SAMe(S-Adenosylmethionine)
    Acetyl-L-Carnitine and Alpha Lipotic acid
    DHEA

    Failed due to immune reaction:
    Royal jelly
    Cod liver oil

    References :
    1. Folkers K, Simonsen R (1995) Two successful double-blind trials with coenzyme Q10 (vitamin Q10) on muscular dystrophies and neurogenic atrophies. Biochim Biophys Acta 1271(1):281-6. May 24.

    2. Backman E, Henriksson KG. Effect of sodium selenite and vitamin E treatment in myotonic dystrophy. J Intern Med. 1990 Dec;228(6):577-81.

    3. Gamstorp I, Gustavson KH, Hellstrom O, Nordgren B. J Child Neurol. 1986 Jul;1(3):211-4. A trial of selenium and vitamin E in boys with muscular dystrophy.

    4. Orndahl G, Sellden U, Hallin S, Wetterqvist H, Rindby A, Selin E. Myotonic dystrophy treated with selenium and vitamin E. Acta Med Scand. 1986;219(4):407-14.)

    5. Orndahl G et al. (1983) Selenium therapy of myotonic dystrophy. Acta. Med. Scand. 213:237.

    6. Hidiroglou M, Jenkins K, Carson RB, Brossard GA. Selenium and coenzyme Q10 levels in the tissues of dystrophic and healthy calves. Can J Physiol Pharmacol. 1967 May;45(3):568-9.

    7. Jackson MJ, Jones DA, Edwards RH. Vitamin E and muscle diseases. J Inherit Metab Dis. 1985;8 Suppl 1:84-7.

    8. Milhorat AT and Bartels WE. (1945) The defect in utilization of tocopherol in progressive muscular dystrophy. Science 101:93-4.

    Chagrin
    Participant
    Posts: 130
    Joined: 04/03/2011
    #81071
    Re: Vitamins, Supplements and Snake Oils.

    Thanks for your info, would be very interested in anything you find.
    I highly recommend the selenium / Vit E / Lecithin combination.
    Lecithin in capsule form ideally as it tastes horrible.
    I think it makes my ankles feel a bit more stretchy.
    Thought I could notice a difference during physio.

    Chagrin
    Participant
    Posts: 130
    Joined: 04/03/2011
    #81072
    Re: Vitamins, Supplements and Snake Oils.

    I meant snake oils as a derogatory term for quack medicine. The expression is also applied metaphorically to any product with exaggerated marketing but questionable and/or unverifiable quality or benefit. Although I have often wanted a wheelchair with mechanical spider legs.

    Only because people make big promises and I do not want to give anyone false hope.
    This has an interesting list of things : http://www.lef.org/protocols/neurological/muscular_dystrophy_01.htm

    Chagrin
    Participant
    Posts: 130
    Joined: 04/03/2011
    #81073
    Re: Vitamins, Supplements and Snake Oils.

    What exactly does lecithin do?? I have never heard of supplementing this for MD specifically??

    My partner is on nowhere near as many supplements as that chagrin (he has unconfirmed lgmd) but currently takes:

    300mg coenzyme q10
    2 multivitamin tablets (1 morning and night)
    2 teaspoons daily gingko biloba juice for circulation
    St johns wort for anxiety
    Concentrated fish oil liquid, 5 mL daily
    Chlorophyll/barley grass powder one teaspoon a day
    Cranberry tablets
    Vitamin d 2000iu a day
    1 tablespoon of linseeds daily

    He drinks a cup of decaffeinated green tea every night as well as some fibre supplements.

    He has been finding the co q10 has been helping with endurance while exercising.

    Thats the only benefit I can confirm.

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #81074
    Re: Vitamins, Supplements and Snake Oils.

    lecithin is a component of cell walls. It is the walls of the muscle cells that dystrophin is a component of and so the theory is that it might help to reinforce and so slow progression. It is one of the things that is diminished in the muscles of dystophic people.

    Some people take it for weight loss.
    There is clinical evidence it improves long term memory.
    If taken with Niacin it can help with blood-pressure too.

    Chagrin
    Participant
    Posts: 130
    Joined: 04/03/2011
    #81075
    Re: Vitamins, Supplements and Snake Oils.

    This is good information.

    I realise now I knew very little about this important subject.

    Will be researching further.

    Many thanks the “Heads Up”

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #81076
    Re: Vitamins, Supplements and Snake Oils.

    I started a Vitamin Cycle this week after doing a couple months of research. 3 complete days in and no negative reactions or side-effects. Actually feeling quiet good and not just psychologically, the physical difference is quiet noticable too.

    Heres my line up:

    Multivitamin & Mineral
    Omega3 Fish Oil 1000mg
    Glucosamine Sulphate 1500mg
    L-Arginine 500mg
    Vitamin C 500mg
    L-Theanine 100mg
    Acetyl L-Carnitine 500mg
    Creatine 500mg
    Serbian Ginseng 600mg

    They all relate to my LGMD except the Serbian Ginseng which is a herbal “Upper” to give me a boost for the day.
    Hope that helps anyone who is doing any research :)

    Sagar
    Participant
    Posts: 82
    Joined: 20/12/2010
    #81077
    Re: Vitamins, Supplements and Snake Oils.

    Very interesting stuff! The only vitimin I take daily is Halibiorange tabs which has A, C & D included. But I have tried Co-Enzyme Q10 but ended up going off them before seeing any effect because the capsules were too difficult to swallow :( I would try them again if I found a brand of the same vitimin that was a bit easier to get down. Any suggestions? I’ve also tried Glucose tablets but saw no effect. I’ve TRIED to get ahold of Creatine but cannot find a place other than the internet to get it. Other things I’d like to try include;

    Omega 3
    Cod Liver Oil
    Green Tea/other herbal tea

    ambitiousturtle24
    Participant
    Posts: 69
    Joined: 18/03/2011
    #81078
    Re: Vitamins, Supplements and Snake Oils.

    Buy all my stuff from Healthspan.

    http://www.healthspan.co.uk/cod-liver-oil/

    They are usually much cheaper than High street special offers.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #81079
    Re: Vitamins, Supplements and Snake Oils.

    Creatine is hard on the kidneys, so it has to be cycled on and off.

    St Johns wort may cause damage if taken long term, modern antidepressants are sometimes safer.

    Co-Q10 will not have noticeable benefits, it takes time to build up and you have to time dosages, 3 times a day. It has been shown to dramatically cut chances of heart problems. May increase endurance if you are still walking.

    I buy my stuff in bulk from :
    http://www.discountvitaminsandherbs.com/

    Although this place has awesome custom mixes, good prices and nice range (Milkshake form might be easier to take?):
    http://www.myprotein.com/uk/

    This chart is not specific to MD but is pretty and interesting and shows the evidence behind many supplements:
    http://www.informationisbeautiful.net/visualizations/snake-oil-supplements/

    Chagrin
    Participant
    Posts: 130
    Joined: 04/03/2011
    #81080
    Re: Vitamins, Supplements and Snake Oils.

    Is there anywhere you can get chewable Co-Enzyme Q-10 or Creatine?

    ambitiousturtle24
    Participant
    Posts: 69
    Joined: 18/03/2011
    #81081
    Re: Vitamins, Supplements and Snake Oils.

    I get all my stuff from http://www.zipvit.co.uk/

    They have great prices and do a lot of good deals. Also have a good chewable selection!

    Sagar
    Participant
    Posts: 82
    Joined: 20/12/2010
    #81082
    Re: Vitamins, Supplements and Snake Oils.

    @ambitiousturtle24 wrote:

    Is there anywhere you can get chewable Co-Enzyme Q-10 or Creatine?

    Not that I am aware of. Q10 is generally specially coated so it doesn’t dissolve in the stomach. Creatine you generally get as a powder but it is pretty awful tasting.

    Chagrin
    Participant
    Posts: 130
    Joined: 04/03/2011
    #81083
    Re: Vitamins, Supplements and Snake Oils.

    Hi… that was great stuff..

    antishaz
    Participant
    Posts: 1
    Joined: 07/09/2011
    #81084
    Re: Vitamins, Supplements and Snake Oils.

    This is my current stack that I am very happy with : Dec 2013:

    Zinc 15mg
    Co Enzyme Q10 300mg
    Selenium 200mcg
    Vitamin E 400iu
    Lethicin 1200mg
    Alpha Lipotic Acid 250mg
    Acetyl L-Carnitine 500mg
    L-Taurine 600mg
    CLA (Conjugated linoleic acid) 1000mg
    HMB ( Beta-Hydroxy beta-methylbutyric acid) 3000mg
    EgCg (Epigallocatechin gallate) 850mg
    L-Glutamine 500mg
    Creatine 700mg

    Chagrin
    Participant
    Posts: 130
    Joined: 04/03/2011
    #81085
    Re: Vitamins, Supplements and Snake Oils.

    Hi everyone,

    Has anyone proven that the use of reishi mushroom is being efficient against MD? I read that patients who could not lift theirs head, after two weeks of daily use could make it…

    Diana Rocha
    Participant
    Posts: 1
    Joined: 12/03/2014
    #81086
    Re: Vitamins, Supplements and Snake Oils.

    I am generally skeptical of things unless there are a few peer reviewed studies. I tried reishi and did not notice much difference. Maybe other people would have different results. Best case you can hope for is that it slows progression, I think rebuilding muscle and function is highly unlikely for anything to do.

    Chagrin
    Participant
    Posts: 130
    Joined: 04/03/2011
    #177469
    Reply To: Vitamins, Supplements and Snake Oils.

    Check my stuff from https://www.nutrizing.co.uk
    I also have great prices and do a lot of good deals. Also, have a good chewable selection!

    nutrizing
    Participant
    Posts: 0
    Joined: 03/05/2019
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