Annaliese Posted February 28, 2012 Report Share Posted February 28, 2012 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=0CGkQ6AEwCA#v=onepage&q=hyperammonemia%20and%20ehlers%20danlos&f=false Quote Link to comment Share on other sites More sharing options...
Annaliese Posted February 28, 2012 Author Report Share Posted February 28, 2012 Btw, urea cycle disorders can "start" post pregnancy. This is why im interested in it. Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted February 28, 2012 Report Share Posted February 28, 2012 I know that Ehlers-Danlos often leads to Osteopenia. That's been long documented. As for ammonia toxicity, this is the first I've heard of it. Looking through pubmed, there is ONE article that links kidney function and Ehlers-Danlos. It was published in 1967 and I can't get the abstract. Based on the title, urine seems to be more acidic. ( Ehlers-Danlos syndrome with renal tubular acidosis and medullary sponge kidneys. A report of a case and studies of renal acidification in other patients with the Ehlers-Danlos syndrome. Levine AS, Michael AF Jr.) so I guess a link is possible. Perhaps see/ call a nephrologist? Quote Link to comment Share on other sites More sharing options...
Annaliese Posted February 28, 2012 Author Report Share Posted February 28, 2012 Thanks Delphic dragon! : ) Quote Link to comment Share on other sites More sharing options...
shoegal Posted March 1, 2012 Report Share Posted March 1, 2012 have you looked into mito? Quote Link to comment Share on other sites More sharing options...
Annaliese Posted March 2, 2012 Author Report Share Posted March 2, 2012 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? Quote Link to comment Share on other sites More sharing options...
Annaliese Posted March 18, 2012 Author Report Share Posted March 18, 2012 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. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted May 1, 2012 Author Report Share Posted May 1, 2012 Oh, just found out high ammonia levels can trigger mast cells! Quote Link to comment Share on other sites More sharing options...
issie Posted May 1, 2012 Report Share Posted May 1, 2012 I've just stumbled across something on methylation and some genetic markers that can be associated with high amonia levels. It to me appears that there could be a POTS connection - but, some on the MCAS forum are connecting it to MCAS. I'll see if I can post the link. I've got some feelers out to a few people that know more than I do about it - so hoping to get some feedback so I can understand it better.http://mthfr.net/methylation-and-mthfr-defects-presentation/2012/04/25Issie Quote Link to comment Share on other sites More sharing options...
Annaliese Posted May 1, 2012 Author Report Share Posted May 1, 2012 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. Quote Link to comment Share on other sites More sharing options...
issie Posted May 1, 2012 Report Share Posted May 1, 2012 I'm glad it's still working well for you. PM me and tell me what it's done for you - so far.I'm HyperPOTS with MCAS and EDS and had osteopenia - which I've corrected and also have osteo-arthritis. So, all of this is interesting to me. Just something I've not researched well. . . . .yet.Issie Quote Link to comment Share on other sites More sharing options...
Annaliese Posted May 1, 2012 Author Report Share Posted May 1, 2012 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? Quote Link to comment Share on other sites More sharing options...
issie Posted May 1, 2012 Report Share Posted May 1, 2012 I know, I understood some of it - but, since it's not something I've done any research in - it's a new one to me. So, hopefully will be able to learn more.I had bone density scans. I keep breaking things and they thought this last time it must have been that my osteopenia had progressed to osteoporosis - well, I had been taking a new calcium and when they did my bone density scan - I had brought my density back up into the normal range. So, it wasn't the reason why my bones broke so bad. Issie Quote Link to comment Share on other sites More sharing options...
Annaliese Posted May 1, 2012 Author Report Share Posted May 1, 2012 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. Quote Link to comment Share on other sites More sharing options...
Berwell Posted September 17, 2018 Report Share Posted September 17, 2018 Curious to know if doctors figured out what was causing your Hyperammonemia. I’m in a similar situation and so any information would be helpful. Quote Link to comment Share on other sites More sharing options...
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