Originally Posted by Chris Parson (Post 70770)

i have a rare condition called Bullous Pemphigoid. try doing a google image search to see what it looks like.

basically my immune system is attacking my skin. there's no known cause or cure.

standard treatment is to take large doses of prednisone, antibiotics, and niacinamide until the symptoms subside. this worked ok about 7 years ago, but the symptoms are back. my hand is blistering up and i'm back on the prednisone. this works to temporarily alleviate the symptoms, but when i try to ween off, the blistering comes right back. if it goes untreated, my whole body will continue blistering until i just decompose completely and die. it has gotten really advanced before and it is very painful.

if i keep taking these drugs, i'm going to die too.

i'm presently trying this alternative treatment that involves taking massive doses of seasalt and vitamin C. the theory is that autoimmune disorders are caused by some kind of hidden bacteria and that the salt/c combo will make my body a toxic environment for this bacteria and i'll get better.

i've been doing this for a week or so and have not seen any improvement. today my fingers started blistering up again, and my spirits are really low.

if any of you have any ideas of how to help, i'd really appreciate it. i've been seeking out some kind of shaman who can help me find some answers but have not yet found one.

good vibes/prayers would also be appreciated.

i'm not ready to die.

thanks y'all.

-chris

Originally Posted by Chris Parson (Post 70770)

i have a rare condition called Bullous Pemphigoid. try doing a google image search to see what it looks like.

basically my immune system is attacking my skin. there's no known cause or cure.

standard treatment is to take large doses of prednisone, antibiotics, and niacinamide until the symptoms subside. this worked ok about 7 years ago, but the symptoms are back. my hand is blistering up and i'm back on the prednisone. this works to temporarily alleviate the symptoms, but when i try to ween off, the blistering comes right back. if it goes untreated, my whole body will continue blistering until i just decompose completely and die. it has gotten really advanced before and it is very painful.

if i keep taking these drugs, i'm going to die too.

i'm presently trying this alternative treatment that involves taking massive doses of seasalt and vitamin C. the theory is that autoimmune disorders are caused by some kind of hidden bacteria and that the salt/c combo will make my body a toxic environment for this bacteria and i'll get better.

i've been doing this for a week or so and have not seen any improvement. today my fingers started blistering up again, and my spirits are really low.

if any of you have any ideas of how to help, i'd really appreciate it. i've been seeking out some kind of shaman who can help me find some answers but have not yet found one.

good vibes/prayers would also be appreciated.

i'm not ready to die.

thanks y'all.

-chris

Originally Posted by Chris Parson (Post 91082)

i didn't pay anything but it looks like i can still post


ok well here's an update:

my mom convinced me to go to this integrative medicine guy a few days ago. he's got me off the prednisone completely, and i'm taking high doses of omega 3-6-9, along with regular daily doses of b-12, co q 10, and magnesium.

it looks like it is really working. if i had been off predisone for this long before, i would already be covered in sores, and while i can still feel some tingling in my hand, the symptoms are actually getting way better. it is pretty amazing.

Originally Posted by Chris Parson (Post 91082)

...i'm taking high doses of omega 3-6-9, along with regular daily doses of b-12, co q 10, and magnesium.

it looks like it is really working. if i had been off predisone for this long before, i would already be covered in sores, and while i can still feel some tingling in my hand, the symptoms are actually getting way better. it is pretty amazing...