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sonhaslada

Does anyone use Niacinamide to slow beta cell destruction?

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sonhaslada

I am the mother of a newly diagnosed LADA son. He tested positive for the IA-2 antigen confirming type 1. Right now he can control his blood sugar with strict diet control and no meds. We were extremely optimistic until he got his diagnosis a few days ago. He has been taking 2.5 grams of nicinamide a day in hopes of stalling the beta cell destruction. Hopefully one of the trails will produce something in the next few years to halt the progression. Does anyone else take niacinamide? Have you experienced or heard of it helping? Even the Mayo clinic writes it is "promising". His

endocrinologist, who also is involved in research, says it has neither been proven or disproven. Thanks for you thoughts.

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benm024

Hi there,

 

I have been taking Naicinaminde for a couple months. I take 1000mguu. I can not tell you it has helped but certainly has not hurt.

 

I do have a pretty unusual story however. I was diagnosed with LADA several months ago due to higher than normal morning blood sugars and the presence of GAD antibodies. (morning ranged from 100-130) All my other numbers are normal or low prediabetic. c-peptide normal. After taking this (and some other things) along with a small Lantus injection nightly I recently had a full antibody test and tested negative for ALL antibodies. Normally this would not happen until all my beta cells were killed off, which clearly has not happened as my blood sugar levels remain the same.

 

Very strange, but I am hoping this means the attack has stopped. might be wishful thinking but will see!

 

Ben

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sonhaslada

That is really wonderful. I hope it is working for you and you can beat this disease. If you cannot put it into remission then at least you can delay the destruction until there is a cure. The DiaPep277 sounds promising and it is in the third phase of trials. Marketing is still a few years away so I hope niacinamide will prevent my son from losing all of his beta cells until then.

 

What are the other things you are taking?

 

I read you should dose 25mg per kilo of body weight so divide your weight in lbs by 2.2 and multiply by 25 to get the right amount.

 

Best of luck and thanks so much for responding.

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benm024

I know how you feel about the diagnosis. I was and am willing to try anything to postpone the destruction of all of my beta cells. Unfortunately I am out of ideas and am in kind of a holding pattern. I was very aggressive with trying to get into a trial. I did not qualify for the diapep one because my cpeptide was normal. I was extremely close to getting into a trial for alphacept (Inducing Remission in Type 1 Diabetes With Alefacept - Full Text View - ClinicalTrials.gov) however at the last minute my antibody tests all came back negative and I was disqualified. They even retested the sample with the same results, so thats how I know I am negative for antibodies now. It was very frustrating to not get in the trial but the negative antibodies gave me hope at the same time.

 

Anyway to answer you question, here is the list of stuff I take today:

 

Perscription

Lisinopril 20 mg

Metformin fast acting 500mg

 

Over the counter

Omega 3 900mg

Multivitamin

Vitamin d3 5000iu

Naicinamide 1000mguu

Chromiun 500mcg

Resveratrol 250mg

Cinnamon 500mg

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sonhaslada

Thanks for that link for the alefacept trial. My son's endocrinologist mentioned a trail is San Fran and that is probably the one she was referring to.

Do you know if they have closed the recruitment for DiaPep? I emailed a recruitment location and it was returned so they probably have.

 

I understand the frustration of not getting into a trial but even if you did, there is a big chance you wouldn't get the drug anyway. That would be devastating if it worked but you were on placebo! We can hope the niacinamide works and the fact you tested negative is very hopeful news.

 

You are on a good list of supplements. Alpha Lipoic Acid is also very good at lowering blood sugar. It is a powerful antioxidant and liver detoxer that helps with neuropathy. I suppose it could prevent it too. Apple cider vinegar lowers blood sugar too. Co Q10 is very good for the heart and gums to prevent disease. I am all for prevention.

 

Are you familiar with the study done at Georgetown University with the vegan diet? It was on type II diabetics but it reduced their need for medication so dramatically several of the participants were "cured", not needing medication any more. I was shocked when I read this as I thought an Atkins diet would be best for my son and was pushing hamburgers on him. Then I read red meat stresses the kidneys and most people on waiting list for kidney transplants are diabetics - another reason to pursue prevention.

 

Thanks for the information and good luck. What you told me is very helpful - and hopeful!

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foxl

hi, sonhas -- I too think Atkins or other low carbing is best. But I emphasize fat instead of protein. I am not too impressed with vegan diet -- I am in fact vegetarian and have found not only better BG control, but more satiety, with high-fat. I tried low fat vegan and never stopped feeling hungry and gradually my compliance with the diet simply dwindled and I gained my weight back.

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sonhaslada

I no longer think Atkins is good for diabetes - as soon as I did a little research I found out otherwise. I believe some fats are very good for you so I do not support the low fat diet either. I think that concept is for type 2 diabetics that are often overweight. Walnuts are full of omega 3s. Avocado is a very healthy fat. People say coconut oil is great for a lot of things. I agree fat helps satisfy hunger; it slows digestion. And good fat rarely makes you fat.

 

Trying to figure out what caused this, some researchers believe it is our western diet very high in processed refined foods, and animal protein and fat. Some think it is related to having a reaction to milk casein or glutten. Some think it is lack of vitamin D. Some think we are obsessed with cleanliness and our children's immune systems do not learn how to respond appropriately. I wish I had known all of this years ago because something as simple as supplementing vitamin D and niacinamide can reduce the chances of a child developing type one diabetes (that has the genetic tendency) by 80%.

 

There are many interesting studies out there. i wish these forums had a specific place to discuss trials so everyone could keep up with what is happeneing. I read about a new study going into phase two for a TB drug (BCG) that halts the destruction and also regenerates cells. This drug has been around 90 years, is just a TB vaccine, does not suppress the immune system. They are just giving it in a higher dose with several rounds and it is working.

 

The T1DAL drug (alefacept) is for psoriasis and there have been cases of skin cancer developing. Not sure about that one.

 

I probably need more acceptance of what is happening - just so hard to sit by waiting if there is any chance this could be stopped.

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foxl

I do not think diet causes T1D -- I really do not. There was a recent article comparing antibody (GAD and IA-2) presence between normal and obese kids and adolescents -- the rate was the same.

 

There are also quite a few articles in recent years indicating that saturated fat is not harmful.

 

Is your son on Vitamin D supplements?

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sonhaslada

Yes he is taking vitamin D.

 

I don't believe obesity causes type one either. I think the milk connection has more to do with little children than LADA.

 

My son tested positive for the IA-2 antibody. Does anyone know what that means?

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foxl

It is one more antibody implicated in Type 1 diabetes.

 

HOW MUCH Vit D does your son take? It took 4000IU to get me into the optimal range .... so I suspect my deficiency preceded my diabetes.

 

You really blame milk? Interesting. I have always consumed a fair amount, but developed lactose intolerance and was dairy-free for a long time, before becoming diabetic.

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sonhaslada

I know it is one of the anti-bodies killing beta cells. I just wondered if there was any more information. What is the difference between anti-bodies?

 

This is what I learned about milk. Remember I am not a scientific person and you can get a more in depth explanation elsewhere. At some point there was a change in some cows (especially Holstein) of the casein protein. It went from A2 to A1 beta. Over time most Holstein cows had this type of protein which is supposed to be the culprit in causing type one diabetes in some (but not all) children. It is very similar to the beta cells in the pancreas. When babies are fed cow's milk based formulas, some of these molecules can leak from their immature digestive systems. The body's immune system sees it an an invader and attacks. Then the immune system confuses the beta cells of the pancreas with the milk protein and attacks them. Even when a baby is breast fed, if the mother consumes a lot of milk, the protein can be passed through her milk.

 

Most kids do not develop diabetes in infancy so I guess this theory would mean all type one diabetes takes time to kill all the beta cells. Or it could mean that the transfer from attacking milk protein to killing beta cells takes longer. The countries with the highest consumption of milk have the highest incidence of diabetes. Some cows milk is safe but it has to be tested to see which protein the cow is producing. All goat's milk is safe. Feeding babies cereal before the age of 3 months can also cause problems. In countries where milk is not consumed, there is a much lower incidence of type one diabetes. We are taught milk is essential but there is actually plenty of calcium in vegetables. I can't tell you how many times I told my son to drink his milk and he never liked it!

 

Diabetes is on the rise - not just type 2. There has to be an explanation.

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sonhaslada

For anyone curious about the niacinamide I thought i would share my son's experience.

When he was diagnosed they did a test to check his blood sugar over the past three months and it was very high - over 230.

 

He went on strict diet control, monitoring his blood to learn which foods he could tolerate best. He was put on glimepiride and could only take half the lowest dose.

 

He started niacinamide. This was supposed to be 2.5 grams a day but I don't think he took more than 1. He also took 2000iu vitamin D and a natural vitamin/mineral supplement (Alive). That is all he would do. His girlfriend found the whole thing nonsense so no support from that area.

 

Finally he went to a highly qualified endocrinologist and he tested positive for IA-2 antibodies. I was hopeful he might get into the the DiaPep277 but he was too late. As my son was having more trouble with low's than highs, this doctor suggested he might quit the drug to see if he could control his BG with diet.

 

He has been doing that for about 3 weeks with good results. His fasting bg is about 100-110. He rarely goes above 135. He went on a trip with his girlfriend and ate a hamburger on a white roll which shot his BG up to over 180. Hopefully he will avoid those mistakes.

 

Maybe the niacinamide is helping.

 

Diet is very helpful. There is so much he does not eat any more but there are a lot of foods he really loves that he can eat to his hearts content without it affecting him. He makes smoothies out of plain yogurt and frozen blueberries. He can bake substituting almond flour for half of the whole wheat. Even home made granola with a lot of nuts and seeds and coconut oil does not affect his BG. He uses Ezekiel bread instead of regular because it is sprouted grain - not flour- and lower on the GI. He does not want sugar any more but uses a very small amount of honey or maple syrup, mainly in something like the granola. He does not like the artificial sweetners. Nothing processed or refined. He was hoping he had his disease under control but the test proved otherwise.

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lamia
For anyone curious about the niacinamide I thought i would share my son's experience.

When he was diagnosed they did a test to check his blood sugar over the past three months and it was very high - over 230.

 

He went on strict diet control, monitoring his blood to learn which foods he could tolerate best. He was put on glimepiride and could only take half the lowest dose.

 

He started niacinamide. This was supposed to be 2.5 grams a day but I don't think he took more than 1. He also took 2000iu vitamin D and a natural vitamin/mineral supplement (Alive). That is all he would do. His girlfriend found the whole thing nonsense so no support from that area.

 

Finally he went to a highly qualified endocrinologist and he tested positive for IA-2 antibodies. I was hopeful he might get into the the DiaPep277 but he was too late. As my son was having more trouble with low's than highs, this doctor suggested he might quit the drug to see if he could control his BG with diet.

 

He has been doing that for about 3 weeks with good results. His fasting bg is about 100-110. He rarely goes above 135. He went on a trip with his girlfriend and ate a hamburger on a white roll which shot his BG up to over 180. Hopefully he will avoid those mistakes.

 

Maybe the niacinamide is helping.

 

Diet is very helpful. There is so much he does not eat any more but there are a lot of foods he really loves that he can eat to his hearts content without it affecting him. He makes smoothies out of plain yogurt and frozen blueberries. He can bake substituting almond flour for half of the whole wheat. Even home made granola with a lot of nuts and seeds and coconut oil does not affect his BG. He uses Ezekiel bread instead of regular because it is sprouted grain - not flour- and lower on the GI. He does not want sugar any more but uses a very small amount of honey or maple syrup, mainly in something like the granola. He does not like the artificial sweetners. Nothing processed or refined. He was hoping he had his disease under control but the test proved otherwise.

 

Hi,

I'm a mother of 2 diabetes children, one of them was recently diagnosed 3 months ago. i've been reading for 2 months now about Niacinamide, i E-mailed many doctors participated in those researches, but i got no answer from any body. i read that a recent scientific study showed that 90% of early diagnosed persons envolved in the study who were given Niacinamide and prevented from all dairy products were cured. but i can't reach any reference to who made this study that i started to believe it was fake. i want to try giving my 9 years old son Niacinamide and eliminate dairy products for few months and see the result, but i'm not sure if this could have bad side effects on the liver or something else. i asked many doctors here in my country but they never heard about this and didn't recommend i try it. Can you please tell me more information about your experience. how many doses per day? did your doctor recommend you to try this? if so, is it possible you could get me to contact with him. i appreciate your help

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sonhaslada

I am sorry it has taken so long to respond. I did not see your post.

 

The doctor my son saw is a highly respected research doctor in Seattle. Her response to him about niacinamide is that there have been no trials to prove it works but "it does not hurt". The Mayo clinic says the same thing and adds, it "looks promising".

 

But before I get too far into that, look at my post in the topic on LDN, low dose naltrexone. I believe this LDN is even more promising than niacinamide because it halts the progress - not just stalls it. And LDN is very safe with no side effects. Here are a few links for LDN.

 

The Low Dose Naltrexone Homepage

Low Dose Naltrexone Forum - LDN & Parkinson's, Type 1 diabetes, MD, Cancer,etc

 

You are lucky to have young children under your control. If I was you, I would find a doctor that is aware of the value of LDN and see him/her. I would give your children LDN, vitamin D (check blood levels), alpha lipoic acid (powerful antioxidant and lowers blood sugar) and niacinamide. A naturopathic doctor might be more aware and educated in preventive medicine. And of course, these things do not interfere with taking diabetic medicine. Sure hope you find help in this area. Let us know if you try it.

 

My son is on his own and his girlfriend poo-paws all of my research without even reading what I have printed out for them from extremely reputable sources. I sure hope he pursues it but I will have to find the doctor and shove him there. Good luck.

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lamia

Thanks alot sonhaslada for your reply, i'll check these links, and i hope i can find a doctor who can help me about it. i'll let you know if i tried something. and Good luck with your son, it's hard to convince them in this age of any thing.

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sonhaslada

My son has agreed to see a ND that prescribes LDN. She treats Crohn's disease, MS and cancer with it but I was told she has worked with diabetics. I also contacted a research doctor at Penn State and he emailed me back right away telling me LDN has not been tested for LADA but it is worth a try. I got the name for the ND from this link. This person can connect you in most parts of the world. LDN is "off label" but perfectly ethical and safe for your doctor to try especially since it has virtually no side effects other than vivid dreams the first week or so and occasionally insomnia (2% of people) that resolves quickly..

 

angelindisguiseldn@yahoo.com

 

I will update this post when I find out if it is helping him. He just started school and is extremely stressed from overworking which caused his blood sugar to go up.

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lamia

Thanks for keeping us updated. I'll keep checking for ur updates to see what happened. tension always raise sugar levels, let him try to relax a little. Good Luck

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sonhaslada

My son cancelled his first appointment with the ND but finally rescheduled about a week ago. She was very optimistic LDN would halt the progression. Unfortunately my son's girlfriend refused to allow him to start it and I can't find out why. She is a very controlling person who makes uninformed basically hysterical decisions with unsubstantiated assumptions. So this is devastating news. If anything changes, I will post again. I have done extensive study on LDN and I take it myself for another condition. It is extremely safe.

 

One of the ways they determine if a person has LADA instead of type two is if they have a family history of type one or other autoimmune diseases, many of which are related to diabetes. Is is very common for there to be psoriasis, hashimoto's disease and other autoimmune diseases in the same family and sometimes diabetics have more than one autoimmune disease. This is why research has focused on using drugs used for other autoimmune diseases on diabetics to see if they work.

 

LDN is highly successful on Crohn's disease and MS as well as many other autoimmune diseases and cancer. It works by regulating the immune system rather than suppressing it. In the trial on Crohn's disease at Penn State University, 90% of patients benefited and 2/3 went into complete remission. In a trial for MS patients all but one out of 40 had no further progression of the disease.

 

It is in my opinion (as well as many other people) well worthy trying. It is extremely cheap, costing about $18 a month, highly effective and has a 30 year safety record.

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beyenemekk

Three weeks ago I learnt that my daughter is Type 1 diabetic. She is 15 months old. She is on regular insulin and I wanted to slow down the destruction of beta cells. I saw recommendation from many websites that niacinamide helps. I talked to her pediatric and she said it is ok to use. However, I couldn’t find it from local and online stores (Fredmayer, Walgreen, Wal-Mart etc) with her dose (some sites says 6mg and others say 9mg). Anyone knows where to get it.

Beyene

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