RE: SCD & CFS? (And also re: Crohn's)

[Guest guest]

I have Crohn’s, arthritis, asthma and mitochondrial

dysfunction (and was once told I have fibromyalgia). While I don’t formally

have CFS I certainly have spent the last many, many years with chronic fatigue!

(I’m 56; my problems started as a teenager.) The fatigue has gotten worse

over the years – apart from my Crohn’s. Fatigue has been my most

debilitating symptom and prevents me from working full-time, or working at all

sometimes.

I’ve found that a very low carbohydrate diet like the SCD

is helping me quite a bit, but not in the way it does/has for some others on

this list. As we keep saying, everybody responds differently, including to

their diseases. I guess as my fatigue has gotten worse and worse I felt I

needed something that would work better and faster than the diet – if there

was such a thing.

That something for me is low-dose naltrexone (LDN). I’ve

been on it for only 8 days and the increased energy I already have is simply remarkable.

I feel alive! (Incidentally, the first thing I felt after Day 2 was a kind of “release”

of my tight lactic-acid-full muscles. I’m getting much more restorative

sleep also.)

I’m not by any means denigrating the efficacy of SCD. Not

even close! It’s a wonderful thing. I’m still on SCD and intend to

stay on for as long as necessary, however long that might be (though, I’m

hoping, not forever!) My faith allows me to avoid getting anxious about the

future and to take one day at a time.

There are some of us who clearly need more than the diet,

especially perhaps to “jumpstart” the healing. Since LDN works so

well for the whole range of autoimmune diseases, and the Penn State Crohn’s

LDN trial results were amazingly good, I decided to ask my gastroenterologist

for it. He agreed (many doctors don’t). It’s a God-send. But so is

the diet. In fact, they work very, very well together, because people

taking LDN should be eating a very low carbohydrate diet in order to keep yeast

levels down, which LDN can exacerbate in some people. So SCD and LDN work sort

of hand-in-glove for those using both. (See http://www.ldninfo.org/

if you’re interested, and also look near the bottom of the page under “LDN

and autoimmune diseases.”)

But this is the SCD list, not the LDN list. If you have

questions feel free to email me offlist.

n

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of mcgohetw

Sent: Tuesday, March 17, 2009 12:04 PM

To: BTVC-SCD

Subject: SCD & CFS?

Greetings all,

Does anyone have any experience with chronic fatigue syndrome and SCD?

After a shingles virus 3 years ago, I've struggled with CFS symptoms,

as well as ibs, with some remission and relapse of both. In fact, my

current relapse with CFS preceded the return of IBS by a couple of months.

Since many on scd have described problems with fatigue and weight

loss, at least during early stages of scd, I'm wondering how those

problems might exacerabte CFS symptoms. Or, conversely, how scd might

benefit folks with CFS?

thanks for your help!

Tom

ibs

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[Guest guest]

Funny, I just asked my GI to prescribe LDN and be refused.I also supplied him with lots of info, trial studies, etc. And he still didn't go for it.I have been sent a list of LDN prescribers in my area but none are GI's, and the others are far away. Do you mind me asking what city you live in? Maybe there is a chance I missed someone.Thank you,Sent from my iPhone

I have Crohn’s, arthritis, asthma and mitochondrial

dysfunction (and was once told I have fibromyalgia). While I don’t formally

have CFS I certainly have spent the last many, many years with chronic fatigue!

(I’m 56; my problems started as a teenager.) The fatigue has gotten worse

over the years – apart from my Crohn’s. Fatigue has been my most

debilitating symptom and prevents me from working full-time, or working at all

sometimes.

 

I’ve found that a very low carbohydrate diet like the SCD

is helping me quite a bit, but not in the way it does/has for some others on

this list. As we keep saying, everybody responds differently, including to

their diseases. I guess as my fatigue has gotten worse and worse I felt I

needed something that would work better and faster than the diet – if there

was such a thing.

That something for me is low-dose naltrexone (LDN). I’ve

been on it for only 8 days and the increased energy I already have is simply remarkable.

I feel alive! (Incidentally, the first thing I felt after Day 2 was a kind of “releaseâ€

of my tight lactic-acid-full muscles. I’m getting much more restorative

sleep also.)

 

I’m not by any means denigrating the efficacy of SCD. Not

even close! It’s a wonderful thing. I’m still on SCD and intend to

stay on for as long as necessary, however long that might be (though, I’m

hoping, not forever!) My faith allows me to avoid getting anxious about the

future and to take one day at a time.

 

There are some of us who clearly need more than the diet,

especially perhaps to “jumpstart†the healing. Since LDN works so

well for the whole range of autoimmune diseases, and the Penn State Crohn’s

LDN trial results were amazingly good, I decided to ask my gastroenterologist

for it. He agreed (many doctors don’t). It’s a God-send. But so is

the diet.  In fact, they work very, very well together, because people

taking LDN should be eating a very low carbohydrate diet in order to keep yeast

levels down, which LDN can exacerbate in some people. So SCD and LDN work sort

of hand-in-glove for those using both. (See http://www.ldninfo.org/

if you’re interested, and also look near the bottom of the page under “LDN

and autoimmune diseases.â€)

 

But this is the SCD list, not the LDN list. If you have

questions feel free to email me offlist.

 

n

    

 

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of mcgohetw

Sent: Tuesday, March 17, 2009 12:04 PM

To: BTVC-SCD

Subject: SCD & CFS?

 

Greetings all,

Does anyone have any experience with chronic fatigue syndrome and SCD?

After a shingles virus 3 years ago, I've struggled with CFS symptoms,

as well as ibs, with some remission and relapse of both. In fact, my

current relapse with CFS preceded the return of IBS by a couple of months.

Since many on scd have described problems with fatigue and weight

loss, at least during early stages of scd, I'm wondering how those

problems might exacerabte CFS symptoms. Or, conversely, how scd might

benefit folks with CFS?

thanks for your help!

Tom

ibs

 

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[Guest guest]

What's your area?MaraFunny, I just asked my GI to prescribe LDN and be refused.I also supplied him with lots of info, trial studies, etc. And he still didn't go for it.I have been sent a list of LDN prescribers in my area but none are GI's, and the others are far away. Do you mind me asking what city you live in? Maybe there is a chance I missed someone.Thank you,Sent from my iPhoneI have Crohn’s, arthritis, asthma and mitochondrial dysfunction (and was once told I have fibromyalgia). While I don’t formally have CFS I certainly have spent the last many, many years with chronic fatigue! (I’m 56; my problems started as a teenager.) The fatigue has gotten worse over the years – apart from my Crohn’s. Fatigue has been my most debilitating symptom and prevents me from working full-time, or working at all sometimes. I’ve found that a very low carbohydrate diet like the SCD is helping me quite a bit, but not in the way it does/has for some others on this list. As we keep saying, everybody responds differently, including to their diseases. I guess as my fatigue has gotten worse and worse I felt I needed something that would work better and faster than the diet – if there was such a thing.That something for me is low-dose naltrexone (LDN). I’ve been on it for only 8 days and the increased energy I already have is simply remarkable. I feel alive! (Incidentally, the first thing I felt after Day 2 was a kind of “release” of my tight lactic-acid-full muscles. I’m getting much more restorative sleep also.) I’m not by any means denigrating the efficacy of SCD. Not even close! It’s a wonderful thing. I’m still on SCD and intend to stay on for as long as necessary, however long that might be (though, I’m hoping, not forever!) My faith allows me to avoid getting anxious about the future and to take one day at a time. There are some of us who clearly need more than the diet, especially perhaps to “jumpstart” the healing. Since LDN works so well for the whole range of autoimmune diseases, and the Penn State Crohn’s LDN trial results were amazingly good, I decided to ask my gastroenterologist for it. He agreed (many doctors don’t). It’s a God-send. But so is the diet. In fact, they work very, very well together, because people taking LDN should be eating a very low carbohydrate diet in order to keep yeast levels down, which LDN can exacerbate in some people. So SCD and LDN work sort of hand-in-glove for those using both. (See http://www.ldninfo.org/ if you’re interested, and also look near the bottom of the page under “LDN and autoimmune diseases.”) But this is the SCD list, not the LDN list. If you have questions feel free to email me offlist. n From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of mcgohetwSent: Tuesday, March 17, 2009 12:04 PMTo: BTVC-SCD Subject: SCD & CFS? Greetings all,Does anyone have any experience with chronic fatigue syndrome and SCD?After a shingles virus 3 years ago, I've struggled with CFS symptoms, as well as ibs, with some remission and relapse of both. In fact, my current relapse with CFS preceded the return of IBS by a couple of months.Since many on scd have described problems with fatigue and weight loss, at least during early stages of scd, I'm wondering how those problems might exacerabte CFS symptoms. Or, conversely, how scd might benefit folks with CFS?thanks for your help!Tomibs No virus found in this incoming message.Checked by AVG.Version: 7.5.557 / Virus Database: 270.11.16/2005 - Release Date: 3/16/2009 7:01 PMNo virus found in this outgoing message.Checked by AVG.Version: 7.5.557 / Virus Database: 270.11.16/2005 - Release Date: 3/16/2009 7:01 PM

[Guest guest]

I'm in Fairfax, va. right outside DC.Sent from my iPhone

What's your area?MaraFunny, I just asked my GI to prescribe LDN and be refused.I also supplied him with lots of info, trial studies, etc. And he still didn't go for it.I have been sent a list of LDN prescribers in my area but none are GI's, and the others are far away. Do you mind me asking what city you live in? Maybe there is a chance I missed someone.Thank you,Sent from my iPhoneOn Mar 17, 2009, at 1:34 PM, "n Van Til"

<rxbachroadrunner> wrote:I have Crohn’s, arthritis, asthma and mitochondrial dysfunction (and was once told I have fibromyalgia). While I don’t formally have CFS I certainly have spent the last many, many years with chronic fatigue! (I’m 56; my problems started as a teenager.) The fatigue has gotten worse over the years – apart from my Crohn’s. Fatigue has been my most debilitating symptom and prevents me from working full-time, or working at all sometimes. I’ve found that a very

low carbohydrate diet like the SCD is helping me quite a bit, but not in the way it does/has for some others on this list. As we keep saying, everybody responds differently, including to their diseases. I guess as my fatigue has gotten worse and worse I felt I needed something that would work better and faster than the diet – if there was such a thing.That something for me is low-dose naltrexone (LDN). I’ve been on it for only 8 days and the increased energy I already have is simply remarkable. I feel alive! (Incidentally, the first thing I felt after Day 2 was a kind of “release†of my tight lactic-acid-full muscles. I’m getting much more restorative sleep also.) I’m not by any means denigrating the efficacy of SCD. Not even close! It’s a wonderful thing. I’m still on SCD and intend to stay on for as long as necessary, however long that might be (though, I’m hoping, not forever!) My faith allows me to avoid getting anxious about the future and to take one day at a time. There are some of us who clearly need more than the diet, especially perhaps to “jumpstart†the healing. Since LDN works so well for the whole range of autoimmune diseases, and the Penn State Crohn’s LDN trial results were amazingly good, I decided to ask my gastroenterologist for it. He agreed (many doctors don’t). It’s a God-send. But so is the diet.  In fact, they work very, very well together, because people taking LDN should be

eating a very low carbohydrate diet in order to keep yeast levels down, which LDN can exacerbate in some people. So SCD and LDN work sort of hand-in-glove for those using both. (See http://www.ldninfo.org/ if you’re interested, and also look near the bottom of the page under “LDN and autoimmune diseases.â€) But this is the SCD list, not the LDN list. If you have questions feel free to email me offlist. n     From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of mcgohetwSent: Tuesday, March 17, 2009 12:04 PMTo: BTVC-SCD Subject:  SCD & CFS? Greetings all,Does anyone have any experience with chronic fatigue syndrome and SCD?After a shingles virus 3 years ago, I've struggled with CFS symptoms, as well as ibs, with some remission and relapse of both. In fact, my current relapse with CFS preceded the return of IBS by a couple of months.Since many on scd have described problems with fatigue and weight loss, at least during early stages of scd, I'm wondering how those problems might exacerabte CFS symptoms. Or,

conversely, how scd might benefit folks with CFS?thanks for your help!Tomibs No virus found in this incoming message.Checked by AVG.Version: 7.5.557 / Virus Database: 270.11.16/2005 - Release Date: 3/16/2009 7:01 PMNo virus found in this outgoing message.Checked by AVG.Version: 7.5.557 / Virus Database: 270.11.16/2005 - Release Date: 3/16/2009 7:01 PM