July 15, 2011 at 8:06 pm #73832Vitamins, 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:
Co-Enzyme Q10 200mg
Vitamin E 1000ui
EgCg(Green tea extract) 400mg
Phosphatidyl Serine 100mg
Reishi Mushroom spores N/a
Vitamin C 500mg
Iron Complex 15mg
Wheatgerm oil 1140mg
Flaxseed Oil 1000mg
beta-Hydroxy beta-methylbutyric acid (HMB)
Acetyl-L-Carnitine and Alpha Lipotic acid
Failed due to immune reaction:
Cod liver oil
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.July 15, 2011 at 10:51 pm #81071Re: 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.July 16, 2011 at 9:10 am #81072Re: 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.htmJuly 16, 2011 at 9:19 am #81073Re: 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
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.AngelicPrincessParticipantPosts: 85Joined: 21/12/2010July 17, 2011 at 10:18 am #81074Re: 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.July 18, 2011 at 10:16 am #81075Re: 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!".taungfoxParticipantPosts: 4,630Joined: 27/09/2010July 21, 2011 at 6:55 pm #81076Re: 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
Vitamin C 500mg
Acetyl L-Carnitine 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 researchSagarParticipantPosts: 82Joined: 20/12/2010July 29, 2011 at 10:52 pm #81077Re: 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;
Cod Liver Oil
Green Tea/other herbal teaambitiousturtle24ParticipantPosts: 69Joined: 18/03/2011July 29, 2011 at 11:05 pm #81078Re: Vitamins, Supplements and Snake Oils.
Buy all my stuff from Healthspan.
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!".taungfoxParticipantPosts: 4,630Joined: 27/09/2010July 31, 2011 at 7:43 am #81079Re: 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 :
Although this place has awesome custom mixes, good prices and nice range (Milkshake form might be easier to take?):
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/August 1, 2011 at 10:18 am #81082Re: Vitamins, Supplements and Snake Oils.
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.December 2, 2013 at 1:05 pm #81084Re: Vitamins, Supplements and Snake Oils.
This is my current stack that I am very happy with : Dec 2013:
Co Enzyme Q10 300mg
Vitamin E 400iu
Alpha Lipotic Acid 250mg
Acetyl L-Carnitine 500mg
CLA (Conjugated linoleic acid) 1000mg
HMB ( Beta-Hydroxy beta-methylbutyric acid) 3000mg
EgCg (Epigallocatechin gallate) 850mg
Creatine 700mgMarch 12, 2014 at 12:34 am #81085Re: Vitamins, Supplements and Snake Oils.
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 RochaParticipantPosts: 1Joined: 12/03/2014March 13, 2014 at 12:43 am #81086Re: 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.
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