Re: IMURAN.... anyone taken it? on it? previously on it?

[Guest guest]

>

> >

> >

> > It's not unlikely that you got the histoplasmosis *because* you were on

> > Remicade because of its effect on the immune system. I would strongly urge

> > you to try LDN before agreeing to go on Humira. Humira works similarly to

> > Remicade. If you're not familiar with LDN, look at

> > www.lowdosenaltrexone.org There are a number of people here who use it

> > along with the SCD, and for most people it works wonders: taken at night it

> > blocks your opioid receptors for three or four hours, which in turn causes

> > your body to produce many more endorphins (people with auto-immune disease

> > have low endorphin levels), which in turn begins to regulate your immune

> > system. (The first thing you'll likely notice will be a big boost in energy

> > level.) But don't expect even doctors at Mayo clinic to necessarily know

> > much about LDN and thus recommend it.

> >

> >

> >

> > Do be careful also with drinking stuff like Ensure. It contains a lot of

> > sugar. Personally, I'm convinced the SCD approach which allows only the

> > specific carbs in fruit and honey is a far better approach than a diet that

> > allows more sugars/starches and cuts out fats (a body, especially a sick

> > body, absolutely need fats, including saturated fats) – and there's a lot of

> > evidence to back that up.

> >

> >

> >

> > n

> >

> > Crohn's 30 years, SCD/LDN six months.

> >

> >

> >

> > *From:* BTVC-SCD [mailto:BTVC-SCD ] *On

> > Behalf Of * Wolf

> > *Sent:* Friday, July 10, 2009 2:27 PM

> > *To:* BTVC-SCD

> > *Subject:* Re: IMURAN.... anyone taken it? on it? previously on

> > it?

> >

> > As a senior in college I started having intestinal problems, but I

> > wasn't formally diagnosed I was diagnosed with Crohn's until about a

> > year later in 1996, and I was on Imuran for a couple years in the

> > late 1990s to the early 2000s. I am fortunate to only live 2 1/2

> > hours from Rochester, Minnesota, and was able to start going to Mayo

> > Clinic at that time. Every summer since 1996 I have my annual review

> > at Mayo Clinic.

> >

> > During that time was was having some flares, would run a fever for a

> > couple days, and get prescribed a short dose of prednisone to help

> > get it back under control. In August if 2004 I had a bowel

> > obstruction, and fortunately it was resolved with no surgery, but did

> > have a hospital stay for a couple days and was on a liquid then soft

> > diet for about 6 weeks.

> >

> > After the obstruction, two variables were changed in my life. First,

> > my GI doctor started me on Remicade (more on Remidace after diet).

> > Second, I started to research how diet could affect Crohn's (and

> > other digestive conditions such as ulcerative colitis). I did get

> > better, but I think it was a combination of both the Remicade and

> > changing my diet. At that time, my reference was, and still is, The

> > New Eating Right For a Bad Gut by Scala. Since then, what I've

> > discovered both from reading the book and trial and error that I have

> > to manage my diet, much like a diabetic has to manage his or her

> > diet. When I stick to my safe foods, I'm good. If I eat some foods

> > that I shouldn't then the next day, it's a bad day with a lot of time

> > in the bathroom. Scala's diet isn't as strict as the SCD for carbs.

> > Basically it's staying away from spicy, fatty and other foods that

> > are difficult for the body to digest. Fish. fish oil and flaxseed

> > oil are good because of their anti-inflammatory properties. My wife

> > has arthritis, and is starting to go gluten-free as she thinks she's

> > gluten sensitive, and I'm starting to read more about SCD so I can

> > further modify my diet. The other diet strategy I've used is to drink

> > Ensure (and the cheaper Wal-mart brand Equate) daily as a diet

> > supplement- this allows me to eat less food and lower the digestive

> > load on my colon.

> >

> > On to Remicade, it was working well until I contracted a lung

> > infection in November of 2007- histoplasmosis (it used to be called

> > the bird flu) Because of my compromised immune system, it ended up

> > spreading and going systemic, a " normal " person would have had flu-

> > like sys-toms for a couple days and been finished . My local

> > hospital shipped me up to Rochester to Mayo Clinic/St. 's

> > Hospital, and I was up there for almost three weeks. Ran fevers of

> > 102+ and to make a long story short, was miserable. Lost 30 pounds,

> > and during a check-up later a Mayo Doctor told me that if I hadn't

> > been a healthy 35 year old, I would have died. The silver lining was

> > that as sick as I was, my Crohn's didn't flare up. I was taken off

> > the Remicade, but to kill the infection ended up on an antibiotic for

> > a year-- it was a fungal infection and it's a lot harder to kill a

> > fungus than a bacteria. It turned out that I was inly the 4th person

> > that Mayo Clinic knew about to experience this specific infection

> > after being on Remicade. That's the short version...

> >

> > Had my annual Mayo visit and my doctor wants to start me on Humera,

> > but I'm not very excited, as it also lowers the immune system as a

> > side-effect of lowering the inflammation in my small intestine. But

> > in the end I may not have a choice since my CT scan showed a

> > progression of inflammation but it's less invasive than the other

> > option of a surgical colon resection. There are other people that

> > have discontinued Remicade and started Humera, so that's encouraging.

> >

> > My understanding from living with Crohn's for over a decade is that

> > Imuran (and Flagyl, etc.) are first line drugs, the if they don't

> > work to manage the inflammation of a Crohn's or UC then Remicade and

> > humera are the " big gun " drugs. My case is very unique, if I hadn't

> > contracted histoplasmosis, I would probably still be on the Remicade.

> > I've had a pretty good experience at Mayo Clinic, about my only

> > complaint is that my doctor minimizes when I want to talk about

> > diet. He thinks it is great that i manage what I eat and that I

> > research it, but that's about it.

> >

> > If anyone has to start Remicade or Humera, make sure you talk with

> > your doctor about what situations you have to avoid that are high

> > risk for picking up an infection.

> >

> > My hope, my goal, is that by adding the SCD component to what I'm

> > already doing, I can at least delay starting the humera. It should

> > also help that some huge stressors in my life, from the past year

> > are finally gone, all i will say is that this past year was horrible.

> > The details would take a couple more paragraphs, too much for now,

> > but what I can say that my wife and other people that saw my

> > situation are amazed that I kept going and didn't quit. I personally

> > think the stress was a big part of my colon inflammation getting worse.

> >

> > I've taken enough time, hopefully this helps a little.

> >

> > Be thankful for every day that we have, be thankful for our family

> > and friends.

> >

> > Jim Wolf

> >

> > Checked by AVG - www.avg.com

> > Version: 8.5.387 / Virus Database: 270.13.10/2231 - Release Date: 07/11/09

> > 05:57:00

> >

> > What is the vsl incudent you mention inthe post regarding ldn?

esther sann

SCd 9 minths

M.c

> >

>

[Guest guest]

One needs to be very wary of prednisone as well. I got valley fever (which

caused pneumonia) while taking it. I was in the hospital longer with that then

any crohn's episode! If it wasn't for that dang prednisone, my life wouldn't

have been turned upside down :-(.

I've been very lucky and haven't caught anything with imuran, remicade, or

humira. But I have the luxury of being able to avoid sick people most of the

time (no kids, don't work, and not currently going to school).

Holly

Crohn's

SCD 12/01/08

>

> It's not unlikely that you got the histoplasmosis because you were on

> Remicade because of its effect on the immune system. I would strongly urge

> you to try LDN before agreeing to go on Humira. Humira works similarly to

> Remicade. If you're not familiar with LDN, look at www.lowdosenaltrexone.org

> There are a number of people here who use it along with the SCD, and for

> most people it works wonders: taken at night it blocks your opioid receptors

> for three or four hours, which in turn causes your body to produce many more

> endorphins (people with auto-immune disease have low endorphin levels),

> which in turn begins to regulate your immune system. (The first thing you'll

> likely notice will be a big boost in energy level.) But don't expect even

> doctors at Mayo clinic to necessarily know much about LDN and thus recommend

> it.

>

>

>

> Do be careful also with drinking stuff like Ensure. It contains a lot of

> sugar. Personally, I'm convinced the SCD approach which allows only the

> specific carbs in fruit and honey is a far better approach than a diet that

> allows more sugars/starches and cuts out fats (a body, especially a sick

> body, absolutely need fats, including saturated fats) - and there's a lot of

> evidence to back that up.

>

>

>

> n

>

> Crohn's 30 years, SCD/LDN six months.

>

[Guest guest]

Make sure you get regular blood counts. My previous dov overdosed me and did

not monitor my blood resulting in a trip to the ICU, 2 weeks in isolation in the

hospital, and almost a death sentence. Used properly it is supposed to be

relatively safe.

Joe

> >

> > It's not unlikely that you got the histoplasmosis because you were on

> > Remicade because of its effect on the immune system. I would strongly urge

> > you to try LDN before agreeing to go on Humira. Humira works similarly to

> > Remicade. If you're not familiar with LDN, look at www.lowdosenaltrexone.org

> > There are a number of people here who use it along with the SCD, and for

> > most people it works wonders: taken at night it blocks your opioid receptors

> > for three or four hours, which in turn causes your body to produce many more

> > endorphins (people with auto-immune disease have low endorphin levels),

> > which in turn begins to regulate your immune system. (The first thing you'll

> > likely notice will be a big boost in energy level.) But don't expect even

> > doctors at Mayo clinic to necessarily know much about LDN and thus recommend

> > it.

> >

> >

> >

> > Do be careful also with drinking stuff like Ensure. It contains a lot of

> > sugar. Personally, I'm convinced the SCD approach which allows only the

> > specific carbs in fruit and honey is a far better approach than a diet that

> > allows more sugars/starches and cuts out fats (a body, especially a sick

> > body, absolutely need fats, including saturated fats) - and there's a lot of

> > evidence to back that up.

> >

> >

> >

> > n

> >

> > Crohn's 30 years, SCD/LDN six months.

> >

>

[Guest guest]

Make sure you get regular blood counts. My previous dov overdosed me and did

not monitor my blood resulting in a trip to the ICU, 2 weeks in isolation in the

hospital, and almost a death sentence. Used properly it is supposed to be

relatively safe.

Joe

> >

> > It's not unlikely that you got the histoplasmosis because you were on

> > Remicade because of its effect on the immune system. I would strongly urge

> > you to try LDN before agreeing to go on Humira. Humira works similarly to

> > Remicade. If you're not familiar with LDN, look at www.lowdosenaltrexone.org

> > There are a number of people here who use it along with the SCD, and for

> > most people it works wonders: taken at night it blocks your opioid receptors

> > for three or four hours, which in turn causes your body to produce many more

> > endorphins (people with auto-immune disease have low endorphin levels),

> > which in turn begins to regulate your immune system. (The first thing you'll

> > likely notice will be a big boost in energy level.) But don't expect even

> > doctors at Mayo clinic to necessarily know much about LDN and thus recommend

> > it.

> >

> >

> >

> > Do be careful also with drinking stuff like Ensure. It contains a lot of

> > sugar. Personally, I'm convinced the SCD approach which allows only the

> > specific carbs in fruit and honey is a far better approach than a diet that

> > allows more sugars/starches and cuts out fats (a body, especially a sick

> > body, absolutely need fats, including saturated fats) - and there's a lot of

> > evidence to back that up.

> >

> >

> >

> > n

> >

> > Crohn's 30 years, SCD/LDN six months.

> >

>

[Guest guest]

Make sure you get regular blood counts. My previous dov overdosed me and did

not monitor my blood resulting in a trip to the ICU, 2 weeks in isolation in the

hospital, and almost a death sentence. Used properly it is supposed to be

relatively safe.

Joe

> >

> > It's not unlikely that you got the histoplasmosis because you were on

> > Remicade because of its effect on the immune system. I would strongly urge

> > you to try LDN before agreeing to go on Humira. Humira works similarly to

> > Remicade. If you're not familiar with LDN, look at www.lowdosenaltrexone.org

> > There are a number of people here who use it along with the SCD, and for

> > most people it works wonders: taken at night it blocks your opioid receptors

> > for three or four hours, which in turn causes your body to produce many more

> > endorphins (people with auto-immune disease have low endorphin levels),

> > which in turn begins to regulate your immune system. (The first thing you'll

> > likely notice will be a big boost in energy level.) But don't expect even

> > doctors at Mayo clinic to necessarily know much about LDN and thus recommend

> > it.

> >

> >

> >

> > Do be careful also with drinking stuff like Ensure. It contains a lot of

> > sugar. Personally, I'm convinced the SCD approach which allows only the

> > specific carbs in fruit and honey is a far better approach than a diet that

> > allows more sugars/starches and cuts out fats (a body, especially a sick

> > body, absolutely need fats, including saturated fats) - and there's a lot of

> > evidence to back that up.

> >

> >

> >

> > n

> >

> > Crohn's 30 years, SCD/LDN six months.

> >

>