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An update on my LDN therapy: A Miracle? An unequivocal YES!
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mjbonsais
Adélie Penguin
Adélie Penguin


Joined: 28 May 2005

Posts: 118
User's local time:
2017 Oct 22 - 4:19 AM


Food Intolerances : gluten, milk, egg, yeast

PostPosted: Fri Nov 06, 2015 1:49 pm    Post subject: Tex you are AWESOME Reply with quote

Yes you are! I admire you and you are so knowledgable within many areas. I know that may come from your background but also reading, studying and your own sheer determination to feel better. LDN may not be for everybody. I bought some magnesium spray today after work to try topically first. My back ache is Shhhh…. hopefully~ getting better. I have had some constipation instead of diarrhea and am keeping my diet light. BRAT diet this week.

We can become hung-ho when new ideas and methods come around and it is best to be prudent and educate oneself. I am, however, thrilled for those of us who have much success with the LDN. Those individuals are true happy campers!

Have a great weekend everybody- I am doing some yardwork and getting ready for Thanksgiving -- can you believe it? lol
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Sheila
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Joined: 18 May 2011

Posts: 1127
User's local time:
2017 Oct 22 - 3:19 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: Fri Nov 06, 2015 6:50 pm    Post subject: Reply with quote

I have not experienced palpitations even though I jumped from 1.5 to 3 mg after 7 weeks. I'm planning on trying 4.5 mg next. I'm taking LDN in hopes of mitigating Sjogrens AI symptoms. I'm seeing some improvement already.

Sheila W
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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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Lucy_B
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Adélie Penguin


Joined: 04 Sep 2015

Posts: 129
User's local time:
2017 Oct 22 - 3:19 AM


Food Intolerances : Gluten, casein, soy/legumes, eggs, nightshades (potatoes, tomatoes, etc.), nuts/seeds, grains, pork, tuna, beef, chicken, salicylates...pretty much everything under the sun. :)

PostPosted: Sat Nov 07, 2015 3:08 pm    Post subject: Reply with quote

Thanks, everyone! I think it was a blood sugar situation, as I also had the shakes and things improved as I continued to eat. In hindsight, I probably didn't have enough for dinner the night before. I didn't have the same experience this morning after using the same dose of LDN last night so am chalking it up to a a random event. I do think I need to up the magnesium intake, though- good idea. I've been using transdermal oil in the mornings but will add to evening routine, as well. Tex, can you remind me what oral mag supplement you recommend? Is it Doctor's Best? I'm not crazy about the oil b/c it gets on everything and has an icky texture.
_________________
2005- Crohn's dx (later changed to "IBS")
2010 to present- Recurrent miscarriages (9)
2012 to present- Elevated thyroid antibodies and TNF-a
2012- tested compound heterozygous for MTHFR mutation
2015- LC dx
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:19 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat Nov 07, 2015 3:45 pm    Post subject: Reply with quote

I use Doctor's Best Chelated Magnesium (magnesium glycinate). It is very highly rated on independent tests. Note that the front label says 200 mg, but if you read the label on the back, it says 200 mg per serving, and a serving is 2 tablets (not 1), so it contains 100 mg per tablet. This labeling convention is true for every brand of magnesium that I have looked at — all of them actually contain half as much magnesium as the front label shows.

Eating only carbs can cause hypoglycemic symptoms. I find that if I eat a snack of carbs only (such as Fritos, for example) about mid-afternoon, by about 5–7 hours later, I will show hypoglycemic symptoms (unless I have eaten something in between those times). If I eat nothing at all in the afternoon, I have no symptoms. Or if I eat something that contains protein, I have no symptoms. But if I eat carbs (only), that will result in the shakes and other symptoms of hypoglycemia.

As I believe Jean (JFR) once pointed out, carbs are the only food type that is totally unnecessary in the human diet.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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wmonique2
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Joined: 03 Aug 2012

Posts: 1015
User's local time:
2017 Oct 22 - 3:19 AM


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

PostPosted: Sat Nov 07, 2015 4:15 pm    Post subject: an update on my LDN... Reply with quote

Tex,

The reason you get hypoglycemic after you eat carbs is because your pancreas shoots too much insulin to cover those carbs (especially if you had a serious amount of them like 40 or 50gr) and then instead of coming down to normal, it goes below normal and you tank hence the shakes etc....

You don't get it when you mix it with protein because the protein carries you over until the next meal and slows down the conversion of carbs -- the fat in the protein does that also... And we have to have carbs (not the processed type) because brains only function on glycogen.

So for you, best is to have a snack of carbs mixed with protein --- that's the answer. Laughing So you are like me, minus the insulin pump.

Love,

Monique
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Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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tex
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Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:19 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat Nov 07, 2015 8:13 pm    Post subject: Reply with quote

Hi Monique,

You're quite correct of course about why carbs alone cause hypoglycemia. And you certainly guessed correctly that when I eat Fritos, I don't just eat a reasonable amount — I try to eat as much of them as possible so that I don't have to worry about the leftovers getting stale on me. Laughing

But as you suggest, it didn't take but 1 or 2 repetitions before it dawned on me that large amounts of carbs alone definitely do not constitute a prudent snack. So these days, I always include protein with any snack.

And yes, the brain uses glucose for fuel, but that doesn't mean that the glucose has to come from dietary carbs. It can come from gluconeogenesis, for example. IOW, the liver can convert amino acids into glucose. Or it can come from glycerol, which is a byproduct of fat metabolism. That's one of the reasons why an all-meat diet requires fatty meat. Lean meat won't work.

Eskimos Prove An All Meat Diet Provides Excellent Health

Incidentally, it's absolutely great to see that you're doing so well these days. thumbs up

Love,
Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Sheila
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Joined: 18 May 2011

Posts: 1127
User's local time:
2017 Oct 22 - 3:19 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: Sun Nov 08, 2015 2:39 pm    Post subject: Reply with quote

Hi Tex, I was happy to see your comment about fatty meat being necessary in a diet high in protein (meat). I've tried grass-fed, organic beef and it's been awful. I love pork and sausage and decided I'd keep on eating it as long as my cholesterol was normal and the MC was in remission. The modified Paleo diet works for me and as much as I would like to add more grains, too many make me feel crummy.

BTW, my son is reading your book and will do Enterolab testing. He is GF but still symptomatic. He tried taking some of my left over budesinide without benefit. This disease is just so hard, especially at the beginning.

Sheila W
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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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Hopeful
Adélie Penguin
Adélie Penguin
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Joined: 08 Sep 2014

Posts: 227
User's local time:
2017 Oct 22 - 3:19 AM




PostPosted: Mon Dec 07, 2015 8:18 am    Post subject: Reply with quote

Hi, Monique. Very interesting posts about LDN. Can you get it from Skip's without a prescription?
Chris
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wmonique2
Rockhopper Penguin
Rockhopper Penguin


Joined: 03 Aug 2012

Posts: 1015
User's local time:
2017 Oct 22 - 3:19 AM


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

PostPosted: Mon Dec 07, 2015 9:33 am    Post subject: Reply with quote

No. You can't get it nowhere without rx in the U.S. Skip's compounds it to minimal dose that works. Otherwise you can buy it without rx at alldaychemist.com from India in 50mg pills and dilute it yourself with water to 4.5mg or less.

Also, you can buy it compounded without rx at buyldn.com. It's from Israel. Very reliable source. You can start there. Best is to go and see a doc that would prescribe it. Otherwise I would try Israel.

Monique
_________________
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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Sheila
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Joined: 18 May 2011

Posts: 1127
User's local time:
2017 Oct 22 - 3:19 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: Thu Jan 28, 2016 1:13 pm    Post subject: Reply with quote

This is another success story for LDN. My son had every MC symptom there is. His GI doc did not take biopsies as requested, subsequently my son doesn't have an "official" MC diagnosis. My mother and I had both been diagnosed with MC. Chris had Enterolab and genetic testing done recently. He has 2 celiac genes (inherited from Grandmother and mother) and Enterolab confirms a gluten intolerance. He stopped eating gluten about 9 months ago with only some improvement. I was purchasing LDN from Israel and bought a couple of bottles for Chris and he started taking it about 5 months ago. His D has improved tremendously as has many other symptoms. I think the LDN made a difference and he agrees.

BTW, I take LDN for Sjogren's Syndrome symptoms and there has been an improvement for me as well.

Sheila W
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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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jmargil

unknown IP

Joined: 02 Feb 2016

Posts: 2
User's local time:
2017 Oct 22 - 3:19 AM


Food Intolerances : seems like everything
Location: massachusetts

PostPosted: Tue Feb 02, 2016 9:42 pm    Post subject: LDN how long did it take to feel a difference? Reply with quote

Sad after zero success on lomotil and 9 mg of entocort and PB for several years a new DR I am seeing suggested trying LDN-I started taking the lowest dose 5 days ago and know that I will be tapering up but am curious when you noticed an improvement--really I am thinking should I get my hopes up or not...my symptoms are as bad as ever but know that I am early in this trial.

thanks for your time-
Julie the Newbie to the Group

good night all :)
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:19 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Tue Feb 02, 2016 10:06 pm    Post subject: Reply with quote

Hi Julie,

Welcome to our Internet family. LDN seems to work the best when nothing else does. So there is reason for optimism.

However, I'm guessing that your doctor probably failed to mention that most of those people who see success from LDN also found it necessary to change their diet to avoid at least their most inflammatory foods. Most GI specialists still believe that diet has nothing to do with MC, and that is the main reason why they are unable to successfully treat so many MC patients.

I've never used LDN, so I can't offer any personal insights on how long it takes to see benefits.

Again, welcome aboard, and please feel free to ask anything.

Tex
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cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Sheila
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Joined: 18 May 2011

Posts: 1127
User's local time:
2017 Oct 22 - 3:19 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 Feb 03, 2016 7:44 am    Post subject: Reply with quote

Welcome, Julie. I'm in remission from MC after changing to a modified Paleo diet and about 2 years on Entocort. I also have celiac disease, diagnosed by my GI doc via genetic tests and symptomology. My son has all the signs of MC but his GI doc didn't take biopsies during his colonoscopy. He had Enterolab tests, determined he is intolerant to gluten and also has 2 celiac-gluten intolerance genes. He began a gluten free diet several months ago but was still having D pretty regularly. He started LDN about 5 months ago and is beginning to see improvement, finally. I take LDN for autoimmune diseases and I have seen definite improvement.

As Tex said, LDN may be a last ditch drug when all else fails. However, changing your diet may be the key to stopping your D.

Sheila W
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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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jmargil

unknown IP

Joined: 02 Feb 2016

Posts: 2
User's local time:
2017 Oct 22 - 3:19 AM


Food Intolerances : seems like everything
Location: massachusetts

PostPosted: Wed Feb 03, 2016 10:12 am    Post subject: thanks for your reply! Reply with quote

My doctor is doing a food sensitivity blood test to check for leaky gut (?) and a stool test (i have had many of these in the past) to see where I am with that and I am going in for a lactose breath test next week. I had the traditional celiac test and was not found to be intolerant of gluten but was told by a few people that I should go gluten free anyway to see if that helped...it did not unfortunately...I am going to google Paleo diet later to see what that is about...i really appreciate your information--seems that people on this site know a whole lot more than any of the dr's I have met on this unfortunate journey. Have a nice day Sheila!
Julie
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tex
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Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:19 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Wed Feb 03, 2016 12:30 pm    Post subject: Reply with quote

Julie wrote:
I had the traditional celiac test and was not found to be intolerant of gluten but was told by a few people that I should go gluten free anyway to see if that helped...it did not unfortunately...


Here's why that test is worthless for MC patients and why your short GF trial did not help:

The obsolete blood tests used by all mainstream MDs will not detect the type of non-celiac gluten sensitivity that causes our reactions. The antibodies are produced in the intestines (not in the blood), so that rarely do enough of them leak into the bloodstream to produce a positive blood test result. Furthermore, the tests they use are so insensitive that they are pretty much worthless even for diagnosing celiac disease unless the disease has been damaging the small intestine for so many years that the villi are almost totally destroyed (a Marsh 3 level of damage). Because of that poor sensitivity, many authorities claim that only about 1 in 20 celiacs are ever diagnosed, despite having severe clinical symptoms (doctors can be rather dense when they want to be, because liability risks sort of force them to "go by the book"). Here's a medical research reference if you don't believe me:

From page 108 of the book Microscopic Colitis:

Quote:
One such study looked at 115 subjects with biopsy-proven celiac disease and found that only 77 % of those who had total villus atrophy showed a positive serum anti-endomysial antibody test result.6 Furthermore, in this particular study, only 71 % of the total number of subjects had total villus atrophy, and for those who had partial villus atrophy, only 33 % showed a positive anti-endomysial antibody test result. As the research report so eloquently pointed out, “Serologic tests, in clinical practice, lack the sensitivity reported in the literature” (Abrams, et al., 2004, p. 547).


The red emphasis is mine.

Here is reference 6 from that quote:

6. Abrams, J. A., Diamond, B., Rotterdam, H., & Green, P. H. (2004). Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy. Digestive Diseases and Sciences, 49(4):546–550. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15185855

As poor as the sensitivity of those tests are for detecting celiac disease when total or near-total villus atrophy has already developed, anyone who has a lower level of damage is out of luck — the tests absolutely will not yield positive diagnostic results for them, so their doctor is forced to officially declare them to be "not gluten sensitive". Rolling Eyes And most of us are not even celiacs, so our level of intestinal damage is less than Marsh 3 (we typically show a Marsh 1 level of villus damage). A Marsh 1 level of damage is consistent with the inflammation in the colon that's used as a diagnostic criterion for LC. Therefore our chances of being diagnosed as gluten sensitive by a mainstream doctor are close to nil (unless they stray from the official diagnostic guidelines), even though virtually all of us here are just as sensitive to gluten as the average celiac.

As almost anyone here who has successfully learned to control their MC by changing their diet will tell you — short term gluten avoidance is typically just an exercise in futility. It takes a while to get our antibody levels down to a level at which we stop reacting. The half-life of IgA anti-gliadin antibodies is 120 days, so if our antibody levels are high when we begin the diet, it can take a long time for them to decline down to a normal level. And if we do not also exclude your other food sensitivities while we are avoiding gluten, those foods can prevent us from ever reaching remission. We have to do virtually everything right (not just most things right) in order to control this disease, because it can be very unforgiving. We have to be just as determined to kick it to the curb as it is determined to ruin our life.

Tex
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cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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