Re: LDN for Crohn (questions and concerns regarding my case)

[Guest guest]

nepoznatoi,

I have no knowledge that would be helpful to you but I want to

encourage you to keep fighting the good fight. You've been through a

lot and I truly hope things will get better for you.

Phil

----------------------------------------------------------

>

> Hello everyone,

>

> I have recently found out about LDN and read with interest about it.

[Guest guest]

Hi,

My daughter, who is 21, started taking LDN in July for her Crohns. She was

terribly thin and in the middle of a huge flare. She weighed only 98 pounds, but she is 5 foot 7 so that is not as thin as you.

The Avicel filler caused some nausea for both of us (I don't have Crohn's, I just wanted to start at the same time to see what were side effects and what was the Crohn's)

Her greatest improvement came when we switched to the cream, compounded by Skip's Pharmacy. She now has a good appetite, no pain at all, and eats pretty much whatever she wants (although she tries to eat healthy, it's hard because she is in college). When she is here she follows a no grain, no sugar, no starch diet, but a low-carb diet is also effective for Crohn's .Dr. Wolfang Lutz has had great success with low carb, you might want to take a look at his book "Life Without Bread".

At any rate, she is back up to 111 and still gaining. This is the FIRST remission she's had in 5 years. Pentasa is an anti-inflammatory so it is fine with LDN.

Absorb Plus, while pricey, is pretty effective at helping put weight on.

Right now she is not taking anything besides LDN, although when she started she took Digestive Advantage for Crohn's, which is a combo of enzymes and probiotics.

She is "supposed" to take fish oil, SCD vitamins, and probiotics, but she forgets more often than not.Here at home she also drank at least one green coconut each day, but you cannot get the truly green ones in the states.

At any rate, I would recommend the cream over the capsules, and I would also recommend cutting out all sugar and processed foods. LDN is amazing for Crohn's, but diet and clean living are very important.

Most of the people in the studies were able to maintain remission after stopping LDN, but since it has no side effects and is also preventive against cancer,she chooses to continue.

Oh - vitamin B-12 shots were also very helpfull.

Best wishes for a complete and long lasting remission.

Teejay

[Guest guest]

Hi Teejay,

Thanks for sharing your experience. They are very helpful. I'm

trying to get my GI to write me a prescription for LDN and was

wondering if I should specifically ask for the cream. Does my doctor

have to write a specific prescription for the cream or just regular

prescription?

>

> Hi,

> My daughter, who is 21, started taking LDN in July for her Crohns.

She was

> terribly thin and in the middle of a huge flare. She weighed only

98 pounds,

> but she is 5 foot 7 so that is not as thin as you.

> The Avicel filler caused some nausea for both of us (I don't have

Crohn's, I

> just wanted to start at the same time to see what were side effects

and what

> was the Crohn's)

> Her greatest improvement came when we switched to the cream,

compounded by

> Skip's Pharmacy. She now has a good appetite, no pain at all, and

eats

> pretty much whatever she wants (although she tries to eat healthy,

it's hard

> because she is in college). When she is here she follows a no

grain, no

> sugar, no starch diet, but a low-carb diet is also effective for

Crohn's .Dr

> Wolfang Lutz has had great success with low carb, you might want

to take a

> look at his book " Life Without Bread " .

> At any rate, she is back up to 111 and still gaining. This is the

FIRST

> remission she's had in 5 years. Pentasa is an anti-inflammatory so

it is

> fine with LDN.

> Absorb Plus, while pricey, is pretty effective at helping put

weight on.

> Right now she is not taking anything besides LDN, although when she

started

> she took Digestive Advantage for Crohn's, which is a combo of

enzymes and

> probiotics.

>

> She is " supposed " to take fish oil, SCD vitamins, and probiotics,

but she

> forgets more often than not.Here at home she also drank at least

one green

> coconut each day, but you cannot get the truly green ones in the

states.

> At any rate, I would recommend the cream over the capsules, and I

would also

> recommend cutting out all sugar and processed foods. LDN is amazing

for

> Crohn's, but diet and clean living are very important.

> Most of the people in the studies were able to maintain remission

after

> stopping LDN, but since it has no side effects and is also

preventive

> against cancer,she chooses to continue.

> Oh - vitamin B-12 shots were also very helpfull.

>

> Best wishes for a complete and long lasting remission.

> Teejay

>

[Guest guest]

Hi ,

Yes - I would say just get the cream - for people with Crohn's it has the benefit of bypassing the gut completely and goes straight into the bloodstream. Yes - the doctor does have to specifically request the cream

Teejay

-- [low dose naltrexone] Re: LDN for Crohn (questions and concerns regarding my case)

Hi Teejay,Thanks for sharing your experience. They are very helpful. I'm trying to get my GI to write me a prescription for LDN and was wondering if I should specifically ask for the cream. Does my doctor have to write a specific prescription for the cream or just regular prescription? >> Hi,> My daughter, who is 21, started taking LDN in July for her Crohns. She was > terribly thin and in the middle of a huge flare. She weighed only 98 pounds,> but she is 5 foot 7 so that is not as thin as you.> The Avicel filler caused some nausea for both of us (I don't have Crohn's, I> just wanted to start at the same time to see what were side effects and what> was the Crohn's)> Her greatest improvement came when we switched to the cream, compounded by> Skip's Pharmacy. She now has a good appetite, no pain at all, and eats> pretty much whatever she wants (although she tries to eat healthy, it's hard> because she is in college). When she is here she follows a no grain, no> sugar, no starch diet, but a low-carb diet is also effective for Crohn's .Dr> Wolfang Lutz has had great success with low carb, you might want to take a> look at his book "Life Without Bread".> At any rate, she is back up to 111 and still gaining. This is the FIRST> remission she's had in 5 years. Pentasa is an anti-inflammatory so it is> fine with LDN.> Absorb Plus, while pricey, is pretty effective at helping put weight on.> Right now she is not taking anything besides LDN, although when she started> she took Digestive Advantage for Crohn's, which is a combo of enzymes and> probiotics. > > She is "supposed" to take fish oil, SCD vitamins, and probiotics, but she> forgets more often than not.Here at home she also drank at least one green> coconut each day, but you cannot get the truly green ones in the states.> At any rate, I would recommend the cream over the capsules, and I would also> recommend cutting out all sugar and processed foods. LDN is amazing for> Crohn's, but diet and clean living are very important. > Most of the people in the studies were able to maintain remission after> stopping LDN, but since it has no side effects and is also preventive> against cancer,she chooses to continue. > Oh - vitamin B-12 shots were also very helpfull.> > Best wishes for a complete and long lasting remission.> Teejay>

[Guest guest]

Thanks to everyone who responded!

Sorry if this is a dumb question but how much cream does one put on

himself?

If I want to start with 3 mg should I buy 3 mg and 4.5 mg LDN creams?

Also, someone mentioned Absorb Plus. Do you know how does it compare

to Ensure Plus? Besides my usual meals I take 3 Ensure Plus daily (990

calories).

[Guest guest]

Hi,

The cream is pre-measured in syringes, but it is best if you call or email Skip's for better info.

Ensure is not at all good for Crohn's - it is loaded with sugar and other ingredients that can cause more inflammation.

My daughter cannot drink it at all - it really is made as a supplement more for older people, but not as an enteral nutrition for people with digestive disorders. Absorb Plus is pricey, but you could probably get your doctor to prescribe whatever it is they use in hospitals.

Regards,

Teejay

-- [low dose naltrexone] Re: LDN for Crohn (questions and concerns regarding my case)

Thanks to everyone who responded! Sorry if this is a dumb question but how much cream does one put onhimself? If I want to start with 3 mg should I buy 3 mg and 4.5 mg LDN creams? Also, someone mentioned Absorb Plus. Do you know how does it compareto Ensure Plus? Besides my usual meals I take 3 Ensure Plus daily (990calories).

[Guest guest]

I am taking Colazal for UC (I also have Crohn's) and have been taking LDN

since July 11 (had to stop for 10 days for surgery). Is anyone taking

Asacol or Colazal and been able to stop because LDN is providing enough

positive help? I would love to cut back on the other Rxs if LDN is working

enough that I don't need the others.

[Guest guest]

>

> Hi,

>

> The cream is pre-measured in syringes, but it is best if you call or

email

> Skip's for better info.

> Ensure is not at all good for Crohn's - it is loaded with sugar and

other

> ingredients that can cause more inflammation.

> My daughter cannot drink it at all - it really is made as a

supplement more

> for older people, but not as an enteral nutrition for people with

digestive

> disorders. Absorb Plus is pricey, but you could probably get your

doctor to

> prescribe whatever it is they use in hospitals.

>

> Regards,

> Teejay

" Ensure is loaded with sugar " ? Hm, sorry but that is just not correct.

I just read nutrition facts and ingredients for both Ensure Plus and

Absorb Plus and it seems that it's Absorb Plus that actually has more

sugar.

Absorb Plus has about 30 or so calories more then Ensure Plus but

that's not such a huge advantage.

Ensure Plus has been suggested to me by all doctors and I have

consulted many, trust me.

So I wonder, are they really all so wrong and WHX? I have never had

any problems with Ensure except that it makes me " full " , but hey - try

to drink 3 daily, it's like 2 and half BIG meals. (and I take all

" normal " meals, too)

Can somebody else share their experiences with Ensure or Absorb Plus?

Thanks

[Guest guest]

nepoznatoi wrote:

> " Ensure is loaded with sugar " ? Hm, sorry but that is just not correct.

I just looked at the ingredient list at ensure.com and the top 3 ingredients

listed are:

1) water

2) maltodextrin (a sugar)

3) sucrose (another sugar)

That sounds like " loaded with sugar " to me.

Tom

[Guest guest]

>

> > " Ensure is loaded with sugar " ? Hm, sorry but that is just not correct.

>

> I just looked at the ingredient list at ensure.com and the top 3

ingredients listed are:

>

> 1) water

> 2) maltodextrin (a sugar)

> 3) sucrose (another sugar)

>

> That sounds like " loaded with sugar " to me.

>

>

>

> Tom

>

What do you mean by " top 3 ingredients " ? The order in which they were

written doesn't say anything about their amount.

Try to look under " nutrition facts " and see that the amount of sugar

in grams is minimal. (much lower then in Absorb Plus definitely)

[Guest guest]

I also have Crohn's and UC and have been taking LDN for more than

three months now. I started out with 3 ml of the transdermal cream

but that didn't seem to be working. I switched over to liquid made

from the 50 mg. naltrexone pill and took 4.5 ml dose. That is the

dose used in the clinical trial. It was ok and caused no problems

even though I only weigh 90 lbs. @ 5'2 " . The first improvement from

LDN was a wonderful increase in energy. It has not yet eliminated my

problem with diarrhea and gas but has made me feel better and my last

blood tests showed improvements. Maintaining weight is really

difficult for me because so many foods aggravate my symptoms, but I

am hopeful that slow improvement will happen as I continue with the

LDN and try to figure out which foods and supplements are tolerable.

The last few days I have taken a few steps backward but that may have

something to do with tapering off prednisone. I had been on a dose

of 40 mg. many months ago and now down to 4 mg. along with 3 Colazal

capsules daily. LDN is definitely worth trying, and I wish you

better health with it.

>

> Hello everyone,

>

> I have recently found out about LDN and read with interest about

it.

> Although I have read almost everything Google could find about it I

> still have some questions and concerns regarding my case.

> So let me start if anyone is interested.

>

> I am 20 years old Crohn sufferer who has had problems since 11 years

> old. But they were never able to confirm 100% that I had Crohn. That

> was a bad thing because I started to think I wasn't actually sick

at all.

> Anyway, till the age of 20 I have been more or less controlling my

> disease by myself (good diet, lifestyle, sometimes a little bit of

> Metronidazol). I did have 2 hospitalizations when things escaped

> control and I was put to corticosteroids which did help but was

> horrible experience. I noticed that stress is very important, funny

> thing is I was NEVER sick during the summer when there is no school,

> no stress etc.

> So, at the end of 2007 my symptoms suddenly got terribly bad. I am

> guessing this was caused by my very bad eating habits (I went to

> college and had nobody to cook for me ) and lots of stress too.

> Anyway, they got SO bad that the inflammation occurred with severe

> abscess that was almost life threatening. I ended up on the

operation

> table and they cleaned everything without going for resection yet.

> Soon another abscess formed and they had to remove my terminal ileum

> which was as they say horribly destroyed by the Crohn's disease.

Yep,

> that was in fact the first time someone was certain I actually had

> Crohn. Too bad it had to be a surgeon. They & quot;installed & quot;

> ileostomy and in month or so I had yet another abscess which they

> successfully cleaned up. So I was in hospital for 3 months and I

have

> now been home for 6 months. My surgeon is ready to reconnect me but

> the problem is I have lost a lot of weight . In my most healthy

days I

> used to have 63 kg (or 138 lbs) and now I am at only 43 kg (or 94

lbs)

> which is really bad considering my height which is 183 cm (or 6 ft).

> I am now feeling OK but SO MUCH comes out on my ileostomy, I feel

like

> I am never going to regain at least some of my weight. And of

course I

> have to do it if I want to get reconnected and continue with my

normal

> life. I am feeling more or less OK (just came back from 5 days in

> hospital - they regained my electrolytes lost because of the bag I

> guess) but another problem I have is that my operation wound is

still

> leaking (I have 5 cm deep fistula). Doctors don't know if the

fistula

> is result of surgeon's mistake (which can happen with severe

> abscesses) or of Crohn's disease. Because right now my Crohn is not

> active at all and has not been for quite some time. (They plan to

deal

> with fistula when time comes for reconnection - no need to do

anything

> right now when it's not causing me bigger problems except it has to

be

> cleaned few times a day)

>

> Now, my fear is that Crohn gets active again and I want to know what

> to do about it. I am doing blood tests regularly and if I see any

tiny

> signs of inflammation I would like to try LDN.

> My questions regarding LDN are:

> 1) Is Irmat Pharmacy reliable company?

> 2) Is Avicel (I think they said they use this exclusively) good

filler?

> 3) What dose should I start with (I know many recommend 4.5 mg but I

> am seriously underweight at the moment and am afraid that it could

be

> too much and cause adverse reaction)?

> 4) How long should I take it?

> 5) Is there a need to take it right now when my Crohn is not active

or

> only during the inflammation if it happens again?

> 6) Can I use Pentasa together with LDN? Btw, at the moment I only

take

> Pentasa, doctors didn't give me anything else. (they did want me to

> take antibiotics for 3 months after I left hospital but I didn't

take

> them because my own experience has shown they are not helpful at

all,

> in fact I sometimes think they worsen my symptoms. Metronidazol was

> the only exception and it helped me well with small inflammations in

> the past)

> 7) When taking LDN, does one have to use any other medicine with

it? I

> have read recommendations for DL-Phenylalanine but didn't find much

> about it.

>

> That would be about it for now. Thanks in advance to anyone who can

> clear at least some of my doubts and concerns!

>

[Guest guest]

As I've written several times before ;-)....I know a person that used Asacol and LDN.

He stopped using Asacol app. 7 months after starting up on LDN. It's a year and a half now

since he started and he still uses only LDN. You have to try, eh? :-)

good luck!

Ingrid

[low dose naltrexone] Re: LDN for Crohn (questions and concerns regarding my case)I am taking Colazal for UC (I also have Crohn's) and have been taking LDN since July 11 (had to stop for 10 days for surgery). Is anyone taking Asacol or Colazal and been able to stop because LDN is providing enough positive help? I would love to cut back on the other Rxs if LDN is working enough that I don't need the others.------------------------------------