Annaliese

Anecdotally, there seems to be a link between ehlers danlos and autoimmunity and im wondering, as have others on here, whether EDS carries with it innate immune dysfunction (and hence a higher risk of AI disease). Im trying to find peer-reviewed articles or books/ websites on the topic but am not having that much luck. Ive seen it reported that people with EDS can have problems scarring ( scarring is part of immune function) and have a higher incidence of respiratory tract infections but that's about all. Has anybody seen any good refs of this topic? Ive also noticed women with EDS often have estrogen- related conditions. Again, i cant really find much on this....have you seen anything? Since women are much more likely to get AI disease, i think the high incidence of estrogen - related conditions among the EDS population is particularly interesting....

Loads of people on here have AI disease. People with innately inadequate immune sytems tend to develop AI diseases (in combination with environmental factors of course). I have def noticed many women on dys forums having urinary tract issues.

Makes me think ldn is a possible answer to autoimmune dys. Im trying ldn but am still on a low intro dose.

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=0CGkQ6AEwCA#v=onepage&q=hyperammonemia%20and%20ehlers%20danlos&f=false

I found i used to have a lot of flushing before i realised i had low blood volume. After starting florinef, this stopped. Blood is redirected during sex, perhaps this creates a blood deficit elsewhere which results in unpleasant effects. Is it possible you have low blood volume?

I have tmj trouble too. Not as bad as yours though. Started in pregnancy. Side of head swelled up so it looked like a hammerhead shark. Couldnt hear properly either. Ive just purchsed some herbal antiinflammatories. Too esrly to tell if they work yet. I hear tmj trouble can come along with ehlers d syndrome. Do you have that? I supect i do. My hips are lso giving me trouble. Have you tried treatments that help fibromyalgia suffers? Thats my next option.

Message me if you would like the oz pharmacy name.

Molecular structure? Nerd it up rama ; )

Go Issie! Wahooooooooo!

Issie, do you remember what you listed down as the discussion topic?

Does anybody know if its possible to get angiotensin II agonist autoantibody testing? Since my dys started in pregnancy and at the time i was labelled with atypical preeclampsia, i started doing research on preeclampsia. It turns out an angiotensin II agonist autoantibody is responsible for preeclampsia. Ive thought for a while now that i seemed symptomatically, to fit into the high angiotensin, low aldosterone group so i was quite alarmed when i saw that angiotensin II was involved in preeclampsia.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1499888/

I think that i read somewhere that methydopa can increase risk of lupus, not sure how that compares with the risks of clonidine...trying to work this one out myself!

I think youre right about there being a relationship between pots and hormones. I know heaps of dys women who have problems related to estrogen.

Has anybody compared clonidine, beta blockers and mestinon ( since mestinon increases parasympathetic activity)?

Ok, thanks Schorobi

Julie, im not doing the levine but started recumbent cycling and its really helped with everything really. I started at 2 mins at resistance consistent with a hr between 95 and 105. I increased 2 mins every week or second week depending on how i felt. The key i reckon is to make sure not to overdo it. If i ever got palps i stopped for eg. I also never did it whilst sick. I put the buke seat way back so i was almost lying down so i could get my heart rate that low.

Schorobi, how did the clonidine patch compare to taking beta blockers in terms of reducing anxiety in particular but other symptoms also?

How come it only happens when standing though?

All i know is that SSRIs made me very sick. Big time diarrhea, nausea and low bp. Just writing SSRI sends a ahiver down my spine!

Ive often wondered about seratonin too because of my gut issues. When i sit or stand this in itself can causes bowel cramps and diarrhea. I dont know what my seratonin levels are like but ive got high standing norepinephrine.