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An update on my LDN therapy: A Miracle? An unequivocal YES!
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Zizzle
King Penguin
King Penguin


Joined: 22 Jul 2010

Posts: 3481
User's local time:
2017 Jun 27 - 10:43 AM


Food Intolerances : gluten, dairy, soy, sesame seeds, buckwheat, amaranth, walnuts, peppers, CORN!

PostPosted: Wed Jun 25, 2014 10:47 am    Post subject: Reply with quote

I too have had amazing success with LDN for my autoimmune disease. It cleared my itchy dermatomyositis skin rash. I only have traces on my hands now. I am still sun sensitive, but the rash is fleeting, whereas before, any sun could cause a major flare of the disease. I also have much more energy and have the happiest mood (best I've had in decades). I've been able to taper my other meds at an unusually fast pace. Unfortunately, I still have D most days, despite being on the paleo diet, but I have bacterial and candida overgrowth, and perhaps other infectious issues at play. I'm currently off all probiotics while preparing for some testing. I had perfect normans when I was drinking water kefir every day, so I hope to get back on it soon.
_________________
1987 Mononucleosis (EBV)
2004 UCTD post-partum
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2012 Dermatomyositis
2013 Modified Paleo Diet
2014 Low Dose Naltrexone
2015 Megaspore and Culturelle probiotics
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JLH
King Penguin
King Penguin


Joined: 17 Jun 2008

Posts: 4272
User's local time:
2017 Jun 27 - 9:43 AM


Food Intolerances : gluten, casein, soy, eggs, yeast; 3+ rice, chicken, corn, almond; 2+ tuna. oat, beef, cashew; 1+ white potato, walnut

PostPosted: Wed Jun 25, 2014 12:09 pm    Post subject: A Facebook post from Got Endorphins! LDN Group Reply with quote

Quote:
Tonia Paulsen

"LDN: Miracle Drug

I posted last night about my husband's flu-like symptoms after starting 1.5mg for Fibro/CFS. He was going to stop and restart at a lower dose. Until this morning at 7am, that is. That was when he turned into Superman.

I wish so badly that I had a before photo of this room. It's the room where everything was thrown when we moved in 14 months ago. It became this way because I didn't have time with a new born and he was in too much pain and too exhausted. There was, quite literally, no clear floor space to step on. You had to move things and restack, just to clear a skinny path to walk to *try* to find what you were looking for. The desk was over to the right about 6 feet, and was STACKED with boxes. Heavy boxes. All the way to the ceiling. Everything that you see in the photo on the right, everything that is neatly stacked, was all over the room, thrown precariously, and covering all that clear floor that you see now.

My husband moved and organized all of it while I was asleep. He said it was like he didn't know what was going on in his body, and it scared him. He didn't know if it was the LDN...he didn't know if he could trust the way his body was feeling.

This is the same man who last night, couldn't give our son a bath because the pain was so bad. He sat there, and he tried, but it just wasn't working.

This is the same man who was in tears 2 nights ago from trying to shave his face.

I just watched this same man cry tears of pure joy.

Now, the trick will be, to make sure he calms down and doesn't over do it. He's afraid it's a fluke and doesn't want to waste it. He's now doing the dishes. Very difficult for me not to give my stamp of approval on that.

(Forgive me for cross-posting in the other groups)"

Not our DX but great news anyhow.

_________________
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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Sheila
Rockhopper Penguin
Rockhopper Penguin


Joined: 18 May 2011

Posts: 1125
User's local time:
2017 Jun 27 - 10:43 AM


Food Intolerances : gluten, eggs, cow's milk, soy, guar gum, whey, goat's milk, cocoa, crab, carrot, amaranth, kamut,
Location: Palm Beach Gardens, Fl

PostPosted: Wed Jun 25, 2014 12:33 pm    Post subject: Reply with quote

Thanks for sharing. I have a friend who is seriously ill with lupus and read a note on the LDN website that it can help those people as well. Sounds like a miracle drug for some and that's wonderful.

Sheila W
_________________
To get something you never had, you have to do something you never did.

A person who never made a mistake never tried something new. Einstein
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Lesley
King Penguin
King Penguin


Joined: 03 Sep 2011

Posts: 2914
User's local time:
2017 Jun 27 - 7:43 AM


Food Intolerances : Too many to list

PostPosted: Wed Jun 25, 2014 2:37 pm    Post subject: Reply with quote

Z - please post the links to the making of water kefir. I am willng to try anything to try to get a "perfect Norman". Although things are better my gut is still severely inflamed, so I cannot get to wellness.
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JLH
King Penguin
King Penguin


Joined: 17 Jun 2008

Posts: 4272
User's local time:
2017 Jun 27 - 9:43 AM


Food Intolerances : gluten, casein, soy, eggs, yeast; 3+ rice, chicken, corn, almond; 2+ tuna. oat, beef, cashew; 1+ white potato, walnut

PostPosted: Wed Jun 25, 2014 5:30 pm    Post subject: Researching LDN Reply with quote

Don't forget to check out You Tube, too. Some really interesting videoe there.
_________________
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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Zizzle
King Penguin
King Penguin


Joined: 22 Jul 2010

Posts: 3481
User's local time:
2017 Jun 27 - 10:43 AM


Food Intolerances : gluten, dairy, soy, sesame seeds, buckwheat, amaranth, walnuts, peppers, CORN!

PostPosted: Mon Jun 30, 2014 1:03 pm    Post subject: Reply with quote

Video on how to make it:
http://www.culturesforhealth.com/water-kefir

My source for grains (in Minnesota, I think):
On sale for $3.99! They must be reproducing too fast. Nice people.

http://www.keysands.com/water-kefir/
_________________
1987 Mononucleosis (EBV)
2004 UCTD post-partum
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2012 Dermatomyositis
2013 Modified Paleo Diet
2014 Low Dose Naltrexone
2015 Megaspore and Culturelle probiotics
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Leah
King Penguin
King Penguin
United States

Joined: 02 Feb 2012

Posts: 2527
User's local time:
2017 Jun 27 - 7:43 AM


Food Intolerances : gluten, dairy, coffee, tea,fruits..... IgA deficient, so I can't be tested
Location: San Francisco Bay Area

PostPosted: Mon Jun 30, 2014 6:17 pm    Post subject: Reply with quote

woo hoo!
Leah
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wmonique2
Rockhopper Penguin
Rockhopper Penguin


Joined: 03 Aug 2012

Posts: 1008
User's local time:
2017 Jun 27 - 10:43 AM


Food Intolerances : GF, SF, DF,Walnuts, cherries, caffeine and another 30+ foods
Location: Georgia, U.S

PostPosted: Mon Jul 07, 2014 10:36 am    Post subject: An update on my LDN therapy: A Miracle? An unequivocal YES! Reply with quote

Hello my friends,

Thank you all for your wonderful support! You guys are awesome!

Keep in mind that LDN is just another option for us.

Love to all,

Monique
_________________
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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DebE13
Rockhopper Penguin
Rockhopper Penguin


Joined: 27 Nov 2011

Posts: 1540
User's local time:
2017 Jun 27 - 9:43 AM


Food Intolerances : Gluten, casein, soy, eggs
Location: Wisconsin

PostPosted: Mon Jul 07, 2014 1:48 pm    Post subject: Reply with quote

cheerleader

Great news for the both of you!
_________________
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
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DJ
Gentoo Penguin
Gentoo Penguin


Joined: 01 Oct 2013

Posts: 472
User's local time:
2017 Jun 27 - 10:43 AM


Food Intolerances : gluten, dairy, eggs, soy, kidney beans (and most other legumes), nuts, especially almonds and peanuts, tapioca, xanthan gum, and chicken
Location: Upstate NY

PostPosted: Thu Jul 17, 2014 7:58 pm    Post subject: Reply with quote

Excellent news, Monique! LDN has very few side effects. I'm a big fan of microdosing.
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Lesley
King Penguin
King Penguin


Joined: 03 Sep 2011

Posts: 2914
User's local time:
2017 Jun 27 - 7:43 AM


Food Intolerances : Too many to list

PostPosted: Fri Jul 18, 2014 8:38 pm    Post subject: Reply with quote

Every time I go out I forget to buy a suitable jar for the kefir. Maybe one day I will remember.
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Zizzle
King Penguin
King Penguin


Joined: 22 Jul 2010

Posts: 3481
User's local time:
2017 Jun 27 - 10:43 AM


Food Intolerances : gluten, dairy, soy, sesame seeds, buckwheat, amaranth, walnuts, peppers, CORN!

PostPosted: Tue Jul 22, 2014 10:37 am    Post subject: Reply with quote

Another update from me. My DM rash is still in remission and I'm TAN now!! I never thought I would ever be able to go in the sun again!! I even changed my whole wardrobe to cover up my chest until the end of time. I am in awe.

I started Nystatin pills for yeast overgrowth again last week. I had tried 2 months ago and had violent D for 4 days and stopped. This time the D was milder and after one week I'm now tolerating the med and thinking of moving up to 2 per day. Eventually I need to take 3/day. The qualities and odor of the D completely changed, so I know I'm "remodeling" my GI tract. I feel really good. No die off symptoms after the first few days (headache and fleeting rashes) other than D. I'm even increasing my fiber intake to keep things moving.

I finally think I'm moving in the right direction to completely heal my gut and autoimmune disease!!
_________________
1987 Mononucleosis (EBV)
2004 UCTD post-partum
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2012 Dermatomyositis
2013 Modified Paleo Diet
2014 Low Dose Naltrexone
2015 Megaspore and Culturelle probiotics
Back to top
wmonique2
Rockhopper Penguin
Rockhopper Penguin


Joined: 03 Aug 2012

Posts: 1008
User's local time:
2017 Jun 27 - 10:43 AM


Food Intolerances : GF, SF, DF,Walnuts, cherries, caffeine and another 30+ foods
Location: Georgia, U.S

PostPosted: Tue Jul 22, 2014 10:47 am    Post subject: an update on my LDN therapy: A Miracle? An unequivocal YES! Reply with quote

Z.

Awesome! since it is an immune system modulator, it takes some time to start seeing the changes....happy for you. I am doing great. Still stand alone medication. I have been tinkering with the dosing and the time I take it but other than that, it's been wonderful.

Love,

Monique
_________________
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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cinemom
Adélie Penguin
Adélie Penguin


Joined: 04 Feb 2015

Posts: 57
User's local time:
2017 Jun 27 - 7:43 AM


Food Intolerances : TBD, lactose intolerant
Location: United States

PostPosted: Sun Mar 15, 2015 12:25 pm    Post subject: Reply with quote

Zizzle wrote:
I too have had amazing success with LDN for my autoimmune disease. It cleared my itchy dermatomyositis skin rash. I only have traces on my hands now. I am still sun sensitive, but the rash is fleeting, whereas before, any sun could cause a major flare of the disease. I also have much more energy and have the happiest mood (best I've had in decades). I've been able to taper my other meds at an unusually fast pace. Unfortunately, I still have D most days, despite being on the paleo diet, but I have bacterial and candida overgrowth, and perhaps other infectious issues at play. I'm currently off all probiotics while preparing for some testing. I had perfect normans when I was drinking water kefir every day, so I hope to get back on it soon.


Monique and Zizzle, thanks for the info on LDN and also for water kefir. I hope to see Norman someday again. Will give water kefir a try! And will research LDN and see if I would be a candidate. Thx!
_________________
“Nothing will ever be attempted if all possible objections must first be overcome.” - Samuel Johnson
"When making your choices in life, do not forget to live." - Samuel Johnson

MC/LC dx October 2014
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jcml12
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 24 Apr 2015

Posts: 33
User's local time:
2017 Jun 27 - 7:43 AM


Food Intolerances : gluten, dairy, soy, casein, grains, gums, sugar, corn
Location: PORTLAND, OR

PostPosted: Fri Apr 24, 2015 3:46 pm    Post subject: LDN Reply with quote

I tried LDN but it cause my muscle fasciculations in my legs to get worse and with that there were more cramps. The doctor said it was a crap shoot as to if it would not bother the muscle twitching or make it worse and in my case it made it worse. I have heard of many people that it has worked wonders for so glad to hear your one of those.

Jan
_________________
Collagenous Colitis, Benign Cramp Fasciculations in lower legs, Thyroid and High Cholesterol
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