PXE LAB

PXE International promotes research that is driven by, and centered on, people affected by PXE. PXE LAB is a forum for PXEers and researchers to brainstorm, collaborate, and develop a research study on nutrition and exercise.

Supplements

4juls's picture

I wonder what are the supplements to help and which to avoid with PXE? Have any supplements helped any others with symptoms? Blessings to you all and thank you in advance.

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Stacey Mokalis's picture

have started taking omega3supplements for my eyes.That is after my eye doctor insisted.Have you been on some kind of vegan diet?I

 

4juls's picture

Not vegan but I do not eat red meat & or any dairy for many years (just personal preference). I take omegas too but worry about them thinning the blood. I hear they are great for eyes and maybe the benefit outways the fact that it can thin the blood? I hope so. 

Erika's picture

Hi Stacey! I was diagnosed just 6 months ago, and I have seen 3 different ophtalmologists until now. I asked each one of them if I should take any kind of supplement (MacuShield, Ocu-Vite vitamin/mineral pill ...) but everytime I was told that this will not be helpful in my case, as basically (quoting one of the Dr.) "it is a defect". As it seems different for you, it will be great to know further regarding this subject. 

Mary-Elizabeth Garcia's picture

I've asked my retinologist the same question and the reply was, "Well, it can't hurt."  Would like to hear from others if they have asked their eye professionals about supplements. 

4juls's picture

I think early on, I basically got he same advise..."It can't hurt", when asking about taking vitamins for my eye such as Ocuvite or whatever there is out there. I do take Omegas in my daily handful of supplements. I hear they are good for eyes but also know they can thin your blood. 

Stacey Mokalis's picture

o are we getting eye bleeding after 40?How many of us were vegan when we got the bleeding?Let's try and see if there is sth common among us when getting this bleeding.Do any of us have heart problems?How were you diagnosed?I was at 5.i have the classic PXE neck marks

Stacey Mokalis's picture

Hi once again!

I would  really be interested  in finding  out if  eye  bleeding  occured  while  following  a  vegan  diet or  whether  it  occured  before  following  a  vegan  diet.What  I  discovered  lately  was  that  while  i  was  consuming  dairy  products  i  had  an  iron  deficiency. Once i  stopped consuming dairy  products  my  blood  test  showed  an  improvement .Has  anyone had  a  similar  problem?My  nutritionist says  that too much  calcium (because  of  pxe) might  be  the  reason  for  my  iron  deficiency.

Stacey Mokalis's picture

Hi once again!!!I  am  so, so excited!!As  I  have  mentioned  before  I got  eye  bleeding  for  the  first  time  last  August,Up  until  then  I never  paid  any  attention  to  my  diet though  I  have  always  been thin.After  the  bleeding  my  eye  doctor  insisted  I  change  my  dietary  habits  by  adding  omega3  rich fish ,  like  sardines  and  salmon  at  least  3  times  a week.I  also  reduced  radically  dairy  products  and  i  took a  vitamin  d supplement  because  my  nutritionist  insisted  it  will  improve  my  immune  system  and  he  topped  that  with  omega 3 cod  oil.Guess  what!  My eye  conditiom ,my  right  eye which  has  never  had  bleeding but  was  in  a bad  condition  has  shown  slight  improvement!!!!!!Has  anyone  had a similar  improvemnt in  their  eyes?Could  it  be  due  to  the  omega  3  or  vitamin  d  supplement?

 

 

 

 

 

 

 

 

 

 

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