Re: Was frightened :( Now LDN with SCD.

[Guest guest]

Jodi, You are on Low Dose Naltrexon, right? How long have you been on it? I've asked my Crohn's daughter's gi doc about it and he said he would like to use the Crohn's med's first before trying this. Since summer she has tried Remicade & Humira she has had reactions to both and cannot take them. So I am keeping LDN as another hope for her (as well as SCD of course). Have you had any adverse reaction to it? Or any other side effects? How does it work? I've read that it boost the immune system, all these other IBD meds are trying to suppress it. Thanks,BelleSubject: Was frightened Now LDN with

SCD.To: BTVC-SCD Date: Sunday, December 21, 2008, 4:07 PM

Heh Mara,

You still having a good mood?

I like the effect it is having on my sleep as I have had sleep issues

for many years and since LDN I have been getting really good quality

sleep which is interesting since in some it can cause sleep disturbance.

How has your sleep been?

Jodi

SCD 14 months

Crohn's/Colitis

--- In BTVC-SCD@yahoogroup s.com, Mara Schiffren <alcibiades@ ...>

> Plus, it boosts endorphins - that's the mechanism that occurs during

> runner's high, for example, or while consuming dark chocolate, so

> you end up feeling pretty damn good. <g>

[Guest guest]

Hi Belle,

Mara just gave a great summarized explaination as to how it works.

http://health.groups.yahoo.com/group/BTVC-SCD/message/13968

Basically it modulates the immune system as opposed to mainstream

thought of suppressing the immune system. I find it very helpful! I

have been on it - I am very bad at remembering dates and my husband

reminded me I have been on it more than a month as I have gradually

increased the dosage (which is suggested for sensitive patients and

especially people with MS). So, I guess maybe it has been about 7

weeks- something like that. I should of written this down, I shall

get the date from my doc tomorrow. Anyway, yes, I find it very

helpful as I have a very hard time on regular meds like all the 5ASA's

(had an allergy) and I had an allergy to Remicade and it stopped

working for me.

Many IBD'ers use the transdermal cream that is compounded in an EMU

oil base as it is superior for absorption. It is very important for

LDN to be absorbed fast and not slow release. LDN needs to be

purchased via a reputable compounding pharmacy as many pharmacies

aren't familiar with fillers etc (plus for us SCD'ers it's best for it

to be SCD compliant) The trasndermal with the EMU oil is available at

Coastal Compounding in Savannah Georgia.

LDN works really well for people on an anti Candida diet and since SCD

is naturally anti Candida it's like a perfect marriage in that respect.

It has really boosted my stamina GI wise.

I am not feeling like I am getting punched in the belly every other

day (I ate contaminated meat months ago and it has been awful shaking

out of it.. I had to take Prednisone a couple of months and LDN

helped me get off of it)

I do not think I would be reacting this well to LDN without the SCD.

I think it is also playing a major role in my recent blood count

increase (I hadn't calculated the time I was on 1.5 mg LDN)

I consider SCD the foundation for all of this and LDN a major piece in

the puzzle -for me-. Among many other things that I do.

The side effects most commonly reported with initial use; sleep

distubances like vivid dreams and even nightmares. This subsides.

Only like %20 of people experience this. Some people experience

insomnia as well. I on the other hand have been sleeping really well.

The peak of the endorphin boost is around 2am. I have woken up a

couple of times only able to go back to sleep about 15-30 minutes

later. I have experienced nausea in the middle of the night which can

be unpleasant but that is also from the endorphin boost. That also

passes.

LDN can also bring up other systemic infections to the surface like

Lyme disease. Just like Candida (but Candida somehow stops the

efficacy of the LDN) So as my GI is getting better on LDN the Lyme and

Co-Infections have gotten worse. Some Lymies report that it is easier

treating Lyme while on LDN some report the opposite. I think this

explains why I have been so incredibly ill with no respite for so many

years as I am dealing with Lyme issues besides being on an awful diet

(I don't even want to think about it!!). So, for me learning this has

been another piece of the puzzle to nurse myself back to health. I

have found an Alternative clinic here that treats Lyme in a very

different way and I am very excited about this as these are treatments

I have done in the past and have felt much better- Now I know it was

treating lyme issues.

Anyway, for me it is taking a while to find the correct recipe for

getting better. As I said SCD is the foundation and LDN is a huge

piece of the puzzle. I cannot go crazy- I still get warning signs but

I don't get debilitated Crohn's wise from let's say eating something.

I know I can only eat 1 egg a week with-in a recipe any other way- my

body is just not ready for. I still have to work up on the probiotic

as if I try the whole capsule I am unhappy.. But it isn't nearly as

bad as it was before.

Personally, I would give LDN a try. Better than all of the harsh

drugs- and you can always graduate to the other meds.

The difficult choice with LDN is that it cannot be taken with

immuno-supressants and one can start it on Prednisone but it is best

to be on 10mg or less although I know of some people that were on more

and tapered. Since your daughter cannot take Remicade- you don't have

-that- difficult a decision to make. I say go for it. Many GI's

won't prescribe it. My integrative doctor does. But you should ask

your doc as he might surprise you.

Here is the LDN support group where you can ask more questions;

http://health.groups.yahoo.com/group/lowdosenaltrexone/

and you can read about it at;

lowdosenaltrexone.org

Also feel free to email me off-list with any questions you have..

At jodah235@... or jodah235@...

Jodi

SCD 14 months

Crohn's/Colitis

[Guest guest]

Thank you Jodi for the info on LDN. We are trying to heal her skin for over a month now due to the reaction to the Humira. Her GI doc started her on Imuran on Dec 1, but stopped it yesterday due to her skin not healing only getting worse. She is taking Valtrex now, was on Acyclovir for 2 weeks. She is still on Entocort. Her leg has been hurting for a few days now too and will limp off and on.She is still on SCD.I am just so sick of this disease, the meds, everything that goes along with it.Thanks for all the information and support.Belle

[Guest guest]

Belle,

I'm so sorry you guys have to go through this.

I hope she feels better soon. You have my prayers.

What's the problem with her skin?

Jodi

SCD 14 months

Crohn's/Colitis

[Guest guest]

We are trying to heal her skin for over a month now due to the reaction to the Humira

Belle,

Has her skin rash been diagnosed? I took Humira and got a rash that was diagnosed as psoriasis. It's a rare side effect and was hard to treat. Hope you and the doctor can figure it out.

Phyllis

CD

[Guest guest]

Hi Phyllis,Thank you so much for your post. If you could please help with some advice. Just yesterday I had to take her again to the dermatologist as her "rash" has changed in appearance. They took a biopsy and they said it looks like psoriasis. I am so upset. How did your's go away? How long did it take to go away? How did you get rid of it? Is it a permanent skin disease now, or once the Humira got out of your system did it then go away? She stopped the Humira on November 20, then started Imuran December 1. Her GI doc took her off of the Imuran December 22 due to this rash, now she is only on Entocort. Today she had a stomach ache for awhile, I hope her Crohn's isn't coming back.I am so upset. Her skin looks awful, and she has some on her face. If you have any advice we would appreciate it so much on how to help heal her skin. Do you

have IBD? What are you taking for it now? She can't have Remicade either. She is on SCD .Thank you so much for your post. We are so upset and at I am at my wits ends- I just don't know what to do!BelleSubject: Re: Was frightened Now LDN with SCD.To: BTVC-SCD Date: Wednesday, December 24, 2008, 10:03 AM

We are trying to heal her skin for over a month now due to the reaction to the Humira

Belle,

Has her skin rash been diagnosed? I took Humira and got a rash that was diagnosed as psoriasis. It's a rare side effect and was hard to treat. Hope you and the doctor can figure it out.

Phyllis

CD

[Guest guest]

Belle,

I sent a reply to your email address because this is off track for SCD. I hope you don't mind.

Please feel free to ask questions if you think I can help.

Phyllis

CD

Re: Was frightened Now LDN with SCD.To: BTVC-SCD Date: Wednesday, December 24, 2008, 10:03 AM

We are trying to heal her skin for over a month now due to the reaction to the Humira

Belle,

Has her skin rash been diagnosed? I took Humira and got a rash that was diagnosed as psoriasis. It's a rare side effect and was hard to treat. Hope you and the doctor can figure it out.

Phyllis

CD