Re: Conventional/alternaive medicine efficacy - your thoughts?

[Guest guest]

Wylie,

We are all different and so have to figure out what works best for ourselves. I have tried cutting out URSO and my liver numbers started going up right away. I have gone back on it but have cut back to the point I am on very low dose (500mg/day for about 200lbs body weight). My brother controls his UC using diet. Maybe I should try an alternative diet.

Ian (52) PSC 89

[Guest guest]

I'm afraid I'm not going to be much help. I've been taking sulfasalazine (Azulfadine then), nearly continuously since November of 1977. The only gaps are a year or so of remission in 1979-80, and a trial of Pentasa in the early 80s. I've never made an attempt to change my diet due to UC or PSC. I did go on a low fat diet after cholecystectomy in 2001 (but my " normal " diet nearly meets the criteria anyway).

I do eat a lot of vegetables & fruits, not much meat, and enough calories to sustain my weight at 170-180 or so (same weight as college). I also exercise (a lot, for my age) and do NOT have what would be considered a low stress job. I also have asthma, and take a medication for it (Singulair). I've taken glucosamine-chondroitin since the mid-90s (joint supplement).

Since PSC diagnosis in 2000, I have added some supplements, in addition to the high-dose URSO; high potency vitamin, calcium, milk thistle, SAMe and lately, fish oil. I've been symptom-free since the cholecystectomy, but the reason can't be said to be alternatives, since I also take the recommended medications.

Nothing is risk-free. All medications (and all foods and supplements - including water!) have potential side effects. The trick is to pick the ones that are efficacious but minimize the side effects.

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On Behalf Of musicalfarming

Hello, Im curious to post and see how people feel about how effective conventional

treatments have been for them, and comparatively how effective any alternative treaments

have been for people...

[Guest guest]

I'm afraid I'm not going to be much help. I've been taking sulfasalazine (Azulfadine then), nearly continuously since November of 1977. The only gaps are a year or so of remission in 1979-80, and a trial of Pentasa in the early 80s. I've never made an attempt to change my diet due to UC or PSC. I did go on a low fat diet after cholecystectomy in 2001 (but my " normal " diet nearly meets the criteria anyway).

I do eat a lot of vegetables & fruits, not much meat, and enough calories to sustain my weight at 170-180 or so (same weight as college). I also exercise (a lot, for my age) and do NOT have what would be considered a low stress job. I also have asthma, and take a medication for it (Singulair). I've taken glucosamine-chondroitin since the mid-90s (joint supplement).

Since PSC diagnosis in 2000, I have added some supplements, in addition to the high-dose URSO; high potency vitamin, calcium, milk thistle, SAMe and lately, fish oil. I've been symptom-free since the cholecystectomy, but the reason can't be said to be alternatives, since I also take the recommended medications.

Nothing is risk-free. All medications (and all foods and supplements - including water!) have potential side effects. The trick is to pick the ones that are efficacious but minimize the side effects.

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On Behalf Of musicalfarming

Hello, Im curious to post and see how people feel about how effective conventional

treatments have been for them, and comparatively how effective any alternative treaments

have been for people...

[Guest guest]

I'm afraid I'm not going to be much help. I've been taking sulfasalazine (Azulfadine then), nearly continuously since November of 1977. The only gaps are a year or so of remission in 1979-80, and a trial of Pentasa in the early 80s. I've never made an attempt to change my diet due to UC or PSC. I did go on a low fat diet after cholecystectomy in 2001 (but my " normal " diet nearly meets the criteria anyway).

I do eat a lot of vegetables & fruits, not much meat, and enough calories to sustain my weight at 170-180 or so (same weight as college). I also exercise (a lot, for my age) and do NOT have what would be considered a low stress job. I also have asthma, and take a medication for it (Singulair). I've taken glucosamine-chondroitin since the mid-90s (joint supplement).

Since PSC diagnosis in 2000, I have added some supplements, in addition to the high-dose URSO; high potency vitamin, calcium, milk thistle, SAMe and lately, fish oil. I've been symptom-free since the cholecystectomy, but the reason can't be said to be alternatives, since I also take the recommended medications.

Nothing is risk-free. All medications (and all foods and supplements - including water!) have potential side effects. The trick is to pick the ones that are efficacious but minimize the side effects.

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On Behalf Of musicalfarming

Hello, Im curious to post and see how people feel about how effective conventional

treatments have been for them, and comparatively how effective any alternative treaments

have been for people...

[Guest guest]

Wylie,

I've had UC for a long time -- was Dxed at 16 and likely had it for two ears

prior. With

PSC, I was Dxed in 2000 when I was 32. I wonder what 48 might bring!

Anyway, I think that is great that a raw food diet has worked for you. I've

toyed with the

idea and have researched it, but it scares the bejeebers out of me, knowing what

happens

if I eat a salad on any given day.

I have become MUCH more selective about the oils I eat, and take Nordic Naturals

Cod

Liver Oil, use organic olive oil, but only in no-heat or low-heat preparations.

For anything

high-heat, I am using either butter or unrefined, virgin coconut oil. Since it

is a medium-

chain fatty acid, it is readily absorbed by the gut -- no lengthy trip through

the guts trying

to break it down like transfats or saturated fats from animal sources. And

Coconut oil is

high in lauric acid -- the only other place it is found is in mother's milk. It

is supposed to

be very healing to the lining of the gut, and since that is where half my health

problems

are, I figure it was worth a shot. I have definitely noticed a shift in my

energy level when I

DON'T have some coconut oil -- I'm dragging all day. I recently found out that

elite

athletes use it as an energy booster while competing, and it makes sense:

Quickly

absorbed, bio-available pure energy.

I am also experimenting with pro-biotics -- yogurt and fermented veggies. We are

planting a veggie garden this week, and I am making sure we have plenty of

veggies that

will preserve well. The research I have done has been compelling.

I'm curious -- did you ease into the raw food thing, or jump in with both feet?

Regards,

Colleen

[Guest guest]

Wylie,

I've had UC for a long time -- was Dxed at 16 and likely had it for two ears

prior. With

PSC, I was Dxed in 2000 when I was 32. I wonder what 48 might bring!

Anyway, I think that is great that a raw food diet has worked for you. I've

toyed with the

idea and have researched it, but it scares the bejeebers out of me, knowing what

happens

if I eat a salad on any given day.

I have become MUCH more selective about the oils I eat, and take Nordic Naturals

Cod

Liver Oil, use organic olive oil, but only in no-heat or low-heat preparations.

For anything

high-heat, I am using either butter or unrefined, virgin coconut oil. Since it

is a medium-

chain fatty acid, it is readily absorbed by the gut -- no lengthy trip through

the guts trying

to break it down like transfats or saturated fats from animal sources. And

Coconut oil is

high in lauric acid -- the only other place it is found is in mother's milk. It

is supposed to

be very healing to the lining of the gut, and since that is where half my health

problems

are, I figure it was worth a shot. I have definitely noticed a shift in my

energy level when I

DON'T have some coconut oil -- I'm dragging all day. I recently found out that

elite

athletes use it as an energy booster while competing, and it makes sense:

Quickly

absorbed, bio-available pure energy.

I am also experimenting with pro-biotics -- yogurt and fermented veggies. We are

planting a veggie garden this week, and I am making sure we have plenty of

veggies that

will preserve well. The research I have done has been compelling.

I'm curious -- did you ease into the raw food thing, or jump in with both feet?

Regards,

Colleen

[Guest guest]

Wylie,

I've had UC for a long time -- was Dxed at 16 and likely had it for two ears

prior. With

PSC, I was Dxed in 2000 when I was 32. I wonder what 48 might bring!

Anyway, I think that is great that a raw food diet has worked for you. I've

toyed with the

idea and have researched it, but it scares the bejeebers out of me, knowing what

happens

if I eat a salad on any given day.

I have become MUCH more selective about the oils I eat, and take Nordic Naturals

Cod

Liver Oil, use organic olive oil, but only in no-heat or low-heat preparations.

For anything

high-heat, I am using either butter or unrefined, virgin coconut oil. Since it

is a medium-

chain fatty acid, it is readily absorbed by the gut -- no lengthy trip through

the guts trying

to break it down like transfats or saturated fats from animal sources. And

Coconut oil is

high in lauric acid -- the only other place it is found is in mother's milk. It

is supposed to

be very healing to the lining of the gut, and since that is where half my health

problems

are, I figure it was worth a shot. I have definitely noticed a shift in my

energy level when I

DON'T have some coconut oil -- I'm dragging all day. I recently found out that

elite

athletes use it as an energy booster while competing, and it makes sense:

Quickly

absorbed, bio-available pure energy.

I am also experimenting with pro-biotics -- yogurt and fermented veggies. We are

planting a veggie garden this week, and I am making sure we have plenty of

veggies that

will preserve well. The research I have done has been compelling.

I'm curious -- did you ease into the raw food thing, or jump in with both feet?

Regards,

Colleen

[Guest guest]

Hey Colleen,

I did ease into raw foods, Pretty much ever since i was dxed with psc i

have tried

many different therapies and eventually started into " raw foods " , it helped

mitigate the

disease but i didnt notice significant improvement tell i really commitied and

left behind

many of my food addictions of the past. I also had to learn the correct way,

This may

scare the bejesus out of you but the raw food diet i am on includes the full

spectrum of

foods :Vegetables(usually juiced), RAW MEAT ( ahhhh), raw milk, eggs, fruits

nuts,etc all

raw except a rare baked potato. even more rare i eat salad , doesent really work

for me.

This diet scared me at first, and its completely contrary to conventional

medical opinion.

But eventually i just got too sick and i jumped into the freezing water. its not

so bad

This is frustrating for me because i now feel so impassioned by my

experience that i

feel like fighting the medical system because i believe it has corrupted its

purpose for

lucrative intent. The FDA has turned its sholder on low quality foods,

environmental

toxins, and many prescription drugs to protect the economy behind them even

though

they cause disease.

This is a big problem and its hard to look at.

Healthfully,

wylie

>

> Wylie,

>

> I've had UC for a long time -- was Dxed at 16 and likely had it for two ears

prior. With

> PSC, I was Dxed in 2000 when I was 32. I wonder what 48 might bring!

>

> Anyway, I think that is great that a raw food diet has worked for you. I've

toyed with the

> idea and have researched it, but it scares the bejeebers out of me, knowing

what

happens

> if I eat a salad on any given day.

>

> I have become MUCH more selective about the oils I eat, and take Nordic

Naturals Cod

> Liver Oil, use organic olive oil, but only in no-heat or low-heat

preparations. For

anything

> high-heat, I am using either butter or unrefined, virgin coconut oil. Since it

is a

medium-

> chain fatty acid, it is readily absorbed by the gut -- no lengthy trip through

the guts

trying

> to break it down like transfats or saturated fats from animal sources. And

Coconut oil is

> high in lauric acid -- the only other place it is found is in mother's milk.

It is supposed

to

> be very healing to the lining of the gut, and since that is where half my

health problems

> are, I figure it was worth a shot. I have definitely noticed a shift in my

energy level when

I

> DON'T have some coconut oil -- I'm dragging all day. I recently found out that

elite

> athletes use it as an energy booster while competing, and it makes sense:

Quickly

> absorbed, bio-available pure energy.

>

> I am also experimenting with pro-biotics -- yogurt and fermented veggies. We

are

> planting a veggie garden this week, and I am making sure we have plenty of

veggies

that

> will preserve well. The research I have done has been compelling.

>

> I'm curious -- did you ease into the raw food thing, or jump in with both

feet?

>

> Regards,

>

> Colleen

>