Drugs and supplements

Drugs, supplements, vitamins and additives.
Should you be taking them?

Warning!
The following details are for reference only. You MUST seek professional advice from your doctor before taking ANY drugs or supplements.
Drugs and supplements can have side effects or react against any drugs you are already taking. You may do more harm than good by trying out a drug "recommended" by a friend or a website. This warning also applies to non-prescribed vitamin/enhancements drinks and tablets which are available. Sometimes these don't have scientific evidence to back-up claims or have not been approved by government departments. Always research products fully, and discuss them with your doctor, before parting with your money. And if you find any interesting websites about similar products(good and bad), then please give me the links to post here. I accept no responsibility for any damage caused by using this information.

Drugs used for various NM related issues.

Problem	Country	Drug	Success vs Fail	Drug	Success vs Fail	Drug	Success vs Fail	Notes
.	.	.	.	.	.	.	.	.
Reflux	UK	domperidon	.	ranitadine	.	.	.	.
.	.	.	.	.	.	.	.	.

Antibiotics used by the NM egroup members.

Antibiotic	Taken for	Notes
Zithromax	pneumonia and chest infections	.
Synergis	RSV	Info on Synergis

Vitamins and supplements.
These are my unofficial statistics of supplements used by some of the members of the NM chatgroup.

Supplement	Possible benefits	Age group	Improvement		Failures	Comments
Supplement	Possible benefits	Age group	small	large	Failures	Comments
Carnitine	More energy	0-10	1	.	.	My daughter uses carnitine and has been for about 6 years now. She gets 5ml 3 times a day. I definitely see an improvement in her energy levels when on it. Looser bowels is only side effect.
Carnitine	.	11-20	.	.	.	.
Carnitine	.	20+	.	.	.	.
.	.	.	.	.	.	.
Creatine	More energy	0-10	.	.	.	At one point we used creatine, but with no effects other than it kicked in premature puberty...this ended when we ended the creatine.
Creatine	.	11-20	.	.	.	.
Creatine	.	20+	1	.	.	.
.	.	.	.	.	.	.
L-tyrosine	More energy, reduce secretions	0-10	1	.	.	Test liver and kidneys regularly
L-tyrosine	.	11-20	1	.	.	.
L-tyrosine	.	20+	1	.	.	.
.	.	.	.	.	.	.
Coenzyme Q10	.	0-10	.	.	.	.
Coenzyme Q10	.	11-20	.	.	.	.
Coenzyme Q10	.	20+	1	.	.	Taking more than suggested brought on slight depression.

Creatine Creatine	Health and Age.com An index of supplements	Drugs.com An index for hundreds of drugs
The Berries Website Creatine - Does it really work?	Creatine Warnings about creatine.	Creatine research MDA USA article
Warning about Creatine An item on the BBC News program today (19.8.99) warned of the possible damage to the liver caused by taking more than the recommended dosage of creatine. Body builders are particularly at risk as they want quick results. Some people with NM have tried taking creatine. Few have noticed any effect. more on creatine	Creatine test The Creatine Kinase Test.	Creatine Update An update (February 2001)
Creatine (FAQ) Frequently Asked Questions.	Creatine The Muscular Dystrophy Association of USA answers FAQ.	http://www.absolute-creatine.com/
Carnitine or (L-carnitine) Carnitine This is a quote from a parent whose child has NM. " This past summer, we tried her on Carnitine and saw a surge of energy for a couple of weeks. She started throwing up because of it and there really was no significant benefit that I could see, not to mention the potential for aspiration so we have since stopped it. She's better without it actually, but it was worth a shot to see what would happen."
Coenzyme Q10 It May Just Be the Miracle Vitamin of the 1990s......	Coenzyne Q10 Coenzyme Q10	Coenzyne Q10

Tyrosine A few parents have tried giving tyrosine to their NM child. Most report little or no change. A study for NM treatment is running in Australia. Results will take quite some time. Any news I receive will be posted on Dr. North’s page.	Tyrosine Very good, easy to read info about this amino acid.	Tyrosine (L-tyrosine) Tyrosine

Oxandrin Oxandrin

Vitamin C www.childlife.net

Hi Cyndie, Actenol is a drug that is taken once a week and is supposed to sort of "reverse" bone loss. Here is a link that explains things better. I've been taking it for 2 yrs and the last scan I had showed slight improvement. Kathleen