Annaliese

Julieph85 did you ever get IVIG?

Eek, broken bones. Sounds nasty Issie. I dont eat dairy so maybe i should take some calcium. Re methylation, my holistic dr mentioned this to me and i looked it up a while ago but i went way over my head. Biochem isnt my thing. The one thing i noticed from that video was that 20-30% of people had the gene he was talking about yet surely 20-30% of people dont get chronically ill(ormaybe they do). The guy speaking said he had two genes mutations but that he was well- hmmm.

Just spent 90 mins watching that video link you posted. Very interesting. Not sure i understood most of it though! How did you find out you have/had osteopenia?

Thanks issie! I was just reading http://hyper.ahajournals.org/content/45/3/385.long again and it retriggered my interest in this. When i first started getting sick i got a lot of flushing so i was thinking mcad triggering hyperpots as my diagnosis. But maybe its urea cycle disorder triggering mcad triggering hyperpots! Still doing well on naltrexone btw.

Oh, just found out high ammonia levels can trigger mast cells!

I found out that pregnancy can trigger a urea cycle disorder (causing ammonia toxicity in some types). Im gonna try to get my blood ammonia levels checked.

No, i dont know anything about it. How is mitochondrial diseases related? I also have very high urinary succinate levels. Ive been given arginex powder for the high orotic acid level and CoQ10 for the high succinate. Im going to ask to be tested for a urea cycle disorder, perhaps i should also be tested for mitochondrial disease?

Thanks Delphic dragon! : )

Btw, urea cycle disorders can "start" post pregnancy. This is why im interested in it.

Ive just received a weird super high urine "Orotate" result which indicates ammonia toxicity. Was seeing if this is somehow related to ehlers danlos and came up with this ref. Does anybody know anything about ammonia toxicity? It seems relevant because it influences nitric oxide levels. Just started checking this out so am a bit confused at present... http://books.google.com.au/books?id=FVfzRvaucq8C&pg=PA694&lpg=PA694&dq=hyperammonemia+and+ehlers+danlos&source=bl&ots=x_cJsS_8_Y&sig=8rJQx81fLDgzKDI4yI_bs8TIIiA&hl=en&sa=X&ei=eWVMT7wN55qJB_m8mHc&ved=0CGkQ6A

Message me if you would like the oz pharmacy name.

Discovered you can get it in Australia but its expensive.

Issie do you mean the article you posted a few weeks ago?

http://www.tinnitusformula.com/qtimes/2009/04/askbarry.aspx "Interestingly, the FDA has banned aldosterone as a bio-identical hormone. This is very unusual as the FDA does not generally interfere with bio-identical hormone therapy except in extreme cases. Since aldosterone is a natural hormone and exists in everyone's body, it defies logic to ban a bio-identical product. Perhaps the answer lies in the fact there is a commercially sold synthetic analog of aldosterone called fludrocortisone. This synthetic drug is manufactured by Barr Laboratories and distributed under the brand name Florinef. T

http://www.tinnitusformula.com/infocenter/articles/treatments/aldosterone.aspx "Bio-identical aldosterone is very difficult to obtain in the US so Dr. Wright enlisted the aid of a Canadian compounding pharmacy to supply it. He put Tom on two 125 microgram capsules daily. To monitor the safety of the therapy, Dr. Wright checked Tom’s serum electrolyte levels (potassium, sodium and chloride) monthly. He began taking aldosterone and nystatin as he tapered off the prednisone."