This Is MS Multiple Sclerosis Knowledge & Support Community

Without a background in science, nevertheless, I try to read material in this area:

One source is InFocus, the quarterly publication of the American Autoimmune Related Diseases Association (website: http://www.aarda.org); another is the Multiple Sclerosis Quarterly Report (or MSQR) available free to participants in the registry of the North American Research Committee On Multiple Sclerosis (website: http://narcoms.org), where I first read of the findings of researchers Barnett and Prineas at Australia's University of Sydney. (The information is also found at ThisIsMS in the reprinting of the article, "Multiple sclerosis: Taming of a shrew.")

I have read and recommended the book, The Autoimmune Connection by Rita Baron-Faust and Jill Buyon, M.D.. Though it is good, I found it lacking in an important area--insulin, specifically excess insulin production (hyperinsulinemia). I readily find info on other hormone abnormalities--too little cortisol (Addison's Disease), too much (Cushing's Syndrome); too little thyroid hormone (Hashimoto's thyroiditis), too much (Grave's Disease); too little effective insulin (diabetes), but too much (???)--scarce info.

Much of this reading and my personal experience (Five people, I know to have MS, including me, have had insulin testing for various reasons and all five report elevated insulin levels.) lead me to believe, as many of you have stated, that MS is not initially an autoimmune disease. I think "neuro-endocrine disease" is a more apt description. A letter to the Director of Johns Hopkins Center for Autoimmune Disease Research (Noel Rose) even elicited this reply: "Your letter raises another possibility in suggesting that elevated levels of insulin may induce cell injury. Following damage to the cells, an autoimmune response may supervene and extend the illness." (He has written for AARDA that there seems to be a common thread in autoimmunity; I proposed that this is insulin.) Why do many (if not most) MS'ers go on to develop diabetes, another "autoimmune disease"--with an insulin connection?

In my own experience, I hear almost constant "gurgling" in the upper left quadrant (above the waist) of the abdomen (tho my internist who has not heard it thinks it must be my stomach. I think "pancreas."); CT scan shows no evidence of a tumor in the pancreas; fasting insulin level is 12 UU/ML (I've read that below 10 is best.), non-fasting insulin is 30 (Our lab lists 27 as the top end of normal.). (By the way, I 'll bet if you have MS and get an insulin test, your levels will be elevated, too!) Later edit: My latest insulin test result was 9 UU/ML. Optimal range is 4 to 7 UU/ML.

My glucose level was 87 mg/dl. I am puzzled that the glucose and insulin could be at those levels when I eat so little and virtually NO carbs (sugar, starch). So now I search for a source of my glucose. Glucose triggers the pancreas to produce insulin (the amount which the pancreas secretes overcompensates for the glucose).

5/20/11 Update from Dr. Joseph Mercola's nutrition plan on that optimal range for the insulin level:
Your Fasting Blood Insulin Test
To find out your insulin levels, you need to get tested by your doctor. The test you need to ask for is a fasting blood insulin test, The test is done by just about every commercial laboratory and is relatively inexpensive.

Facts about Your Fasting Insulin Test:
• This test is profoundly useful. It's one of the least expensive tests in traditional medicine, yet it is one of the most powerful. A normal fasting blood insulin level is below 5, but ideally you'll want to be below 3.
• You can safely ignore the reference ranges from the lab as they are based on "normals" of a population that has highly-disturbed insulin levels.
• This is a great test to do BEFORE you start your program as you can use it to assess how well you are progressing in the program.
• If your level is above 5 you will want to consider significantly reducing most sugars and grains, even whole wheat grains, until you lower your level. Once you've normalized your insulin level you can reintroduce grains into your diet at a lower level to optimize your health.
• Exercise is of enormous benefit in improving the sensitivity of your insulin receptors, and help normalize your insulin level far more quickly.
Is there any other reason the pancreas would pump out lots of insulin? Aging, a diet with too much glucose-producing food, a "sick" pancreas (genes? bacteria? virus? disease or cancer?), or inflammation in the body (my situation, I believe, due to chronic sinusitis and mucus drainage--I think it becomes glucose and also triggers the pancreas.). (By the way, one friend with MS clears her throat constantly; another experiences exacerbations during allergy season, another has frequent(!) bouts of pancreatitis--the inflammation connection?) One page in the NIH Plan to Coordinate Autoimmune Research lists all kinds of suspected germ-caused illnesses--don't they all cause inflammation? To view the plan, go to this link http://www.niaid.nih.gov/dait/pdf/ADCC_Report.pdf Why do statins and corticosteroids and tumeric often help some people?--They are anti-inflammatory! Salmon is naturally anti-inflammatory, too.

11/25/10 – a search on Google, "chemistry of mucus," led me to the information that there is SUGAR in mucus!
It seems to start with high glucose, then excess insulin in my case.

I have read that excessive insulin is involved with diabetes, heart disease, high cholesterol, high blood pressure, and obesity; why not autoimmunity as well--specifically, MS? Several researchers (at Brown, Harvard, Texas--probably more that I don't know about) think there is a connection between insulin and Alzheimer's, too! One source described insulin in the bloodstream as an irritant--"like lye in the pipes." Is this an explanation for peripheral neuropathy in diabetes,...vasculitis,...the tingling of MS?

Every odd fact I know about MS seems explainable with this excess-insulin theory: (Does it work for what you know, too?) Stress/MS link--stress causes the body first to produce more cortisol (a glucocorticoid, which then triggers more insulin). Vitamin D/sunshine/weight-bearing exercise cause the body to remove insulin. Pregnancy improves MS symptoms; there are frequently exacerbations after delivery--could the pregnant mother be producing excess insulin for development of the baby? After delivery, does excess production continue unopposed, unused, and "loose" in her system? (See General Discussion Forum, "Ms and the pill" posting by bromley, on Dec. 26, 2005) MS is practically non-existent among Eskimos (Lapps, too)--their diet has little carbohydrate or anything that changes to glucose; or do they have a stronger pancreas that just does NOT produce excess insulin? It is generally accepted that MS symptoms are better in the morning before eating--isn't this when insulin levels are lowest? Could Swank diet succcesses in many be attributable to the same principle?

I have asked 3 dietitians for a list of foods that will depress insulin production--no luck! One even stated that "with the aging...the pancreas, which makes insulin, doesn't work as well," and referred to "the natural tendency for insulin levels to increase with age." Any suggestions on this? My internist says there is no medication to depress production.

Honoring this website's disclaimer, of course, I am not promoting a regimen; I welcome your comments (Please be kind in critiquing my unconventional ideas.); I seek your help on diet suggestions; and if anyone has had an insulin (NOT glucose!) test (about $50 if insurance won't cover it), I am interested in the results. Or, as has been suggested with the Naltrexone poll, maybe a pattern will emerge!
I apologize for this long-winded posting. I can't resist one final comment to demonstrate my twisted sense of humor: You are saying, "Oh, sure, NOW I hear this, after eating all those Christmas cookies and candy!" I don't think the calories matter; I think the "sweetness" triggers the pancreas to produce insulin; therefore, artificial sweeteners, like Splenda and others, are no better than sugar, maybe worse since they are hundreds of times sweeter than sugar.

Wow, Impressive post!!! There could definitely be some correlation. Perhaps that is why the Swank and Paleolithic diets have some success??

"Insulin--Could This Be the Key?"

It is one of the keys, but what probably happens is more like this:

Chronic stress - due to chronic inflammation, in turn due to chronic infection - alters the hypothalamic- pituitary- adrenal axis, producing more cortisol. This really increases the production of glucose which in turn raises insulin levels. Low brain levels of glucose may have an input here, as you have a lot of germs in the brain eating up the sugar, and, in the progressive form, a lot of inflammatory host cells eating up the sugar as well. So secondary neuroendocrine imbalances do occur.

Have a look in the Antibiotics and Regimens sections, then CPn Help to find out more information about this, and welcome to the site!

Sarah

Hi Lyndacarol
Gosh interesting theory but I see several problems with it, just as a thought. Insulin (the hormone that ferries sugar into the cells) is of vital imprtance in the body and is delicately balanced with glucagon (a concentrated sugar that will increase blood sugar if it slips low) and both made by the pancreas so you always have sugar available for your brain. Which thing your pancreas makes depends ONLY on the sugar level in your blood. The brain can tolerate blood sugar levels up to the 200's but on the low side the brain will go into a coma with too low sugar. As a result, your pancreas constantly regulates the blood sugar using insulin and glucagon so that you are maintained in the narrow normal range of 70-110. Your high insulin is marginally high and it's presence is greatly influenced by other factors. For example if you are over weight you may have developed insulin resistence in which your cells do not "take up" the sugar ferried in with insulin well. Your pancreas will make more in that case because the delicate feedback loop that tells the pancreas that insulin needs to be made is sugar-in other words if there's sugar in the blood the pancreas makes more insulin. So if you made some insulin but the resistant cells did not take up the sugar and the sugar remained high, the pancreas will make more. It is not regulated by how high the insulin is in the blood but by the level of sugar floating around. This is because sugar is of vital importance and must be maintained in a narrow band or your go into a possibly fatal coma(too low) or diabetic ketoacidosis(another kind of coma) if the insulin level is so low that the sugar is floating around without any way to get into the cells and the brain where it is critical. If your theory were correct, people with diabetes type 2 the insulin resistant kind of diabetes who have high insulin levels (high insulin levels are considered pre diabetic for type 2 diabetes), would be prone to autooimmune disease and this is not the case. The connection between diabetes and MS is type 1 diabetes and these people make no insulin except what is given via a needle in response ot blood levels of sugar

you are a deep thinker! Keep researching and looking into it!
I'm with you on the autoimmune angle. Prineas convinced me thoroughly that MS is not autoimmune. Others followed his work and as far as I am concerned any "autoimmune" theory is wrong, though some epitope spreading after illness or injury of some kind is possible as a secondary issue, though potentially this coud be healed by the original irritant being gone. (similar to rheumatic fever which though damaging is self limited)

I use antibiotics myself 3 months on the regimen. For 15 years I have had MS and I have researched many angles out of plain curiosity. I am a nurse.
Marie
.

Hi LyndaCarol

I'd like to echo Viper and Marie. It was a terrific post and you're a great thinker. I haven't a clue what the answer may be to your question about insulin though.

Welcome to the site and you definitely posted in right place.

Sharon

I did a quick search in the net, and found the following.
http://www.aquarianonline.com/Wellness/ ... brief.html

The relation to diet with MS is unproven at this time. In our house we practice a low fat limited sugar content as well as other dietary changes. John has definitely shown improvement through diet and his glucose levels used to be high in his blood where now they fall into an acceptable range. He does have Type 2 diabetes in his family but that apparently has nothing to do with MS but more to do with diet. My advice eat low fat as well as low sugared foods skip the processed, run from aspartame and limit all know toxins it will certainly help. Rather than a cure it seems to be more a controller. This is my opinion by no means law. Great post by the way and it's exactly what we need to do is to mull over every angle.

Sorry, Lyndacarol, for the post I made at first, now rewritten. I was just in rather a bad mood so shouldn't have been posting at all. Sorry.

So once again welcome to the site!

Sarah

lyndacarol,

I too am really interested in dietary influences on different diseases, including but not limited MS.

Like you, I got really interested in the possibility that elevated insulin levels (hyperinsulinemia) might play a role in MS. When I searched on PubMed, most of the papers on hyperinsulinemia were old, from the 1950s and 1960s, and abstracts weren't available. I am still curious as to what those researchers observed! It seems that once MS got its autoimmune label, alternative explorations became more limited. So I can't answer what role hyperinsulinemia might play in MS based on the published medical literature.

I've a question for you: were you and the other people you mentioned all experiencing a relapse, that is, serious MS-related symptoms at the time the insulin levels were measured?

When I had the relapse that led to my diagnosis, I remember that my blood sugar was slightly elevated - apparently insulin was not checked. The nurse at the time (this is before I had an MS diagnosis) said that the elevated glucose was a sign of stress. Since I was in pretty bad pain and couldn't see or walk straight, I guess I could confess to lots of stress at that moment!

After about a year post-diagnosis of eating a lower-fat diet with no gluten or dairy, I had some cardiovascular screening blood work done. That battery measured insulin. I was not having any MS-related symptoms at the time. My fasting insulin level was a "good" low of 7 uU/ml (heart-protective target was less than 10, reference range 6-27). I don't know what the non-fasting level is.

I am surprised that dieticians you talked to didn't give you more help on diet relating to insulin levels, but I'm not a nutritionist. I have found a lot published about people with obesity and high insulin that were put on various diets with emphasis on limiting carbohydrates, and after several weeks their insulin levels dropped considerably. There is also a lot of information on the glycemic index of foods, that is, those foods that break down to glucose quickly - I was surprised that table sugar does not have as high a glycemic index as a potato! If glucose levels spike, then insulin will then rise. I ran into the same problem you did - there is a lot more info on blood glucose than insulin levels! If you are interested I can send you more links and info - most of this is not specific to MS.

Keep up the search! We are all on the quest, here.

Lisa

Thank you all for the responses I found today. I appreciate your encouragement and understanding; this is what I expected from what I had read earlier. I do think we need to examine all the angles. In my own humble way, I am trying. I hope NEVER to offend anyone with my questions!

I am "old" to MS (I've had it for 13 years--more, I think, and rather debilitated); I am no scientist! I am "new" to many of your ideas and appreciate your patience with me.

The idea that hyperinsulinemia starts the MS process is hard for me to give up. Given my years of sinus drainage, it just seems so logical that the mucus I always described as "sweet" might push the pancreas to produce too much insulin.

I have looked for information on the pancreas-insulin function; and think you have a good handle on it, Marie. I'll definitely be comparing notes with you in the future! Especially because you were so encouraging--"Keep researching and looking into it!" And because we share the opinion on MS as an autoimmune disease.

And, specifically to LisaBee--I agree with you "it seems that once MS got its autoimmune label, alternative explorations became more limited." I think medical specialties came into existence about 1949 or 50, and it seems a "disease" in one area is never looked at in another.

To your question....the five MS'ers who had an insulin test and found elevated levels were not in the throes of exacerbations. They have ongoing symptoms and could probably be describe as secondary progressive.

Insulin testing is not done routinely so I am not surprised that you didn't have one in the beginning. Your later result of 7 was indeed good; I know I should throw out my hypothesis on that basis, but I need to think about it a bit more first.

I am interested in any info on diet recommendations that might lower insulin. I am aware of glycemic index--white potatoes have been GONE from my diet for a long time. White sugar, white bread, white rice--most carbs. I take in fewer than 50 grams per day (even much less now, 1-16-10). I have never had a weight problem--5'5" and 124--more than the 116 in high school, but that was DECADES ago! This diet just won't "re-boot" my pancreas!

After reading The Gold Coast Cure by Andrew Larson, M.D. and his wife Ivy Larson, who HAD but got over MS, and who said that avocadoes depress insulin production, I now eat one avocado per day. I see no great change--"gurgling" stops for about 2 hours after eating some. I need other food suggestions--avocados get boring! So now, 1-16-10, I have given up daily avocados.

I do SO appreciate your words, "Keep up the search! We are all on the quest here."

lyndacarol's insulin post got me thinking again about the insulin connection, blood glucose, and more broadly, the utilization of glucose in the mitochondrial respiratory chain. I ran some searches on hypoglycemia and demyelination, and of course found some hits, below is one from a diabetes journal if interested:

<shortened url>

There are also articles on inborn errors of metabolism causing demyelination, but I've already posted about those.

I then was watching a recent episode of "House", a Fox channel medical drama about a grouchy doctor who is a master at differential diagnoses, and the episode of the evening was about finding an insulinoma in a patient that caused transient episodes of hyperinsulinemia when the guy was stressed, which would result in hypoglycemia, and the guy would pass out. Not that I'm suggesting MS is linked to occult insulinomas, but it got me thinking about stress reactions, different ways energy metabolism could get deranged, which might be involved in MS, both on a "macro" level (blood glucose level) and on a "micro" level - mitochondrial respiration (utilization of glucose to power the cell).

On the "macro" side, interesting enough, a very recent article came out about the hormone ghrelin and that levels in MS patients are twice as high as in the controls. Abstract is below. Ghrelin is a peptide released from the stomach that stimulates excretion of growth hormone. There is an explosion of research about ghrelin in obesity and regulation of metabolism. My rudimentary understanding is that ghrelin is lower in obese people, and rises with fasting. The authors suggest that maybe the MS patients had higher ghrelin in response to inflammation, but I would also offer an alternative one, that maybe elevated ghrelin is a sign of some other derangement, like growth hormone release (or something else) is not responding properly to the ghrelin signal, so ghrelin keeps firing out.
Just an idea.
^^^^^

Neuro Endocrinol Lett. 2005 Dec 28;26(6) [Epub ahead of print] Related Articles, Links


Patients with multiple sclerosis have higher levels of serum ghrelin.

Berilgen MS, Bulut S, Ustundag B, Tekatas A, Ayar A.

Department of Neurology, Firat University Faculty of Medicine, Elazig, Turkey. msberilgen@yahoo.com.

In addition to metabolic and neuroendocrine actions, the recently discovered hormone ghrelin has been found to have inhibitory effects on inflammatory processes. This novel finding suggests possible involvement of the peptide in the pathogenesis of inflammatory disorders including the inflammatory demyelinating disease of the central nervous system, multiple sclerosis (MS). The aim of the present study was to evaluate serum ghrelin levels in patients with MS. Serum ghrelin levels were measured in 40 MS patients and 20 controls. Control subjects were selected from healthy individuals, matched for age, sex and BMI. Fasting plasma levels of ghrelin were determined by radioimmunoassay. Serum ghrelin level was significantly higher in MS group (226.16 +/- 35.84 pg/ml, n=40) than that in the control group (113.04 +/- 11.28 pg/ml, n=20, P<0.001). Both, relapsing remitting and secondary progressive MS patients had ghrelin levels significantly higher than controls, while there was no significant difference between the ghrelin levels of patients with these two categories of MS. This study for the first time shows that patients with MS have higher levels of ghrelin and this increase in circulating ghrelin level may function against the proinflammatory process in these patients.

PMID: 16380704 [PubMed - as supplied by publisher

^^^^^^^
I'll do more digging on ghrelin and what it does, it's relationship between blood glucose, insulin, etc, since I don't know much yet. In the meantime, maybe this will trigger some synaptic firing!

Thanks, lyndacarol!
Lisa

It's interesting that you mentioned the programme House. The doctor is played bu Hugh Lawrie who has to walk around with a limp and a walking stick. I only saw one of the episodes and guess what disease they were examining - a young man with MS.

By coincidence there was an interview with Hugh Lawrie in one of the UK newspapers. It said that he used to row when he was at Cambridge University but had to pack it in as he had a severe bout of Glandular Fever. I hope that the walking stick he has in the series (and the limp) are for his charater rather than the real thing.


Ian

The last week or so has not been good. I didn't even get to the computer to check online. Now I find here lots more reading to do.

I have been convinced that nothing can be given to lower insulin levels directly. But I think the insulin level is somehow connected to inflammation. That may be the way to get to insulin. (Is the Swank diet and the one in The Gold Coast Cure basically anti-inflammatory? The diet of the Eskimos too?)

Please understand that I throw out these ideas for discussion and friendly criticism. I certainly have NO answers. If I misunderstand the purpose of "forum," gently set me straight.

Other reading promotes these ideas. Please give me your kind thoughts on this angle: There is much emphasis on inflammation these days--an article in the January/February 2006 AARP says, "Usually, once the threat subsides, so does inflammation, and you begin to heal. But inflammatory conditions such as rheumatoid arthritis and asthma; long-term infections; persistent insults such as smoking, obesity, and high blood pressure; or even a genetic predisposition can trigger a state of chronic inflammation. When the immune system doesn't get to shut down, it does damage to the body--including your cardiovascular system."

I know of recent reports that MS becomes worse in those who smoke. Could those who improve on the Abx regimen be removing a "long-term infection" which causes inflammation? Richard Pryor died of "damage to the body--...cardiovascular system." I have chronic sinusitis--inflammation! I have heard MS'ers are more likely to have exacerbations after surgery or a virus--inflammation again? Why did a friend have symptoms that led to her MS diagnosis when she stopped allergy shots? And now only gets exacerbations during the allergy season? She has a bad cold now; I will have to call and see if MS symptoms are back, too. Statins are anti-inflammatory; corticosteroids, too. Could there be different sources for this inflammation?

Review your own situation. Do you have a source of inflammation?

I think it is more appropriate for me to post the latest titles of my reading in the Reading Nook rather than here

Gosh lynda carol and there's the rub. You got right to it. Yes there is inflammation for sure in the brain in ms. NO one knows why, though the prevailing theory is that it is autoimmune or in other words your immune system attacking the brain for no apparent reason. The only reason we say the body is attacking the brain for no apparent reason is we can't find any reason for it to be attacking like a germ (virus or bacteria) or a dead cell we can see that make snese for us to have our immune systems there on "official body business" (but that does not mean a germ is not there). It appears the immune system is there causing inflammation of it's own accord; thus autoimmune.

When the immune systme is active in any area several things happen as a matter of course, and inflammation is part of that process no matter if natural or autoimmune. It appears to me that everytime a researcher comes out and declares with great trumpeting that some feature of the immune system is upregulated in MS (ie IL-15) you also find it is upregulated in natural immune reactions ( like in response ot germs)as well if you take time to look, so simply saying hey IL-15 is high in MS means nothing because it is also high in bacterial or viral stimulation of the immune system. Sometimes however people think this kind of thing the holy grail of MS; kill of the IL-15 and suddenly the "abnormal immune response" clears up supposedly. Unfortunately this kind of approach has not worked well so far (tysabri, steroids, campath etc-help a little maybe , or sometimes are actually dangerous it appears, but not cure by any means)

Research done by prineas j and barnett showed in lesions in MS brains that the nerve dies THEN the immune system comes in to clean up just as we expect it to. This seems to support an infective theory rather than an autoimmune one as germs can kill cells like nerves. Others have followed up that work agreeing that the nerve dies then the immune systme comes in to clean up. But not so fast, Claudia lucchinetti of the ms lesion project disagreed that this was correct saying that her research show clearly 4 types of lesions not the one that he mentions as if all lesions start by having the nerve die that way. Her work indicates that there are two autoimune types and two other types apparenlty infective or toxic.

The probelm with saying "OK then there is a germ there and the body is reacting as it should. This is what the immune system does is attack injured cells and clean them up when they are infected so it must be a germ" is that we can't find one that everyone agrees is the smoking gun or even find one everyone agrees is even there at all. NO sooner does one guy find one and another says no I did not find it, your research is off base you.

For years there has been hints of a link to epstein barr virus (mono or glandular fever) human herpes 6 (roseola) hepatits b shots, and a variety of other things recently chlamydia pneumoniae but also according to Lida Mattman PhD and author of "Stealth Pathgens" borellia like spirochetes. Research and the scientific process rages back and forth with no clear scientific winner. I am personally a fan of the stealth pathogen idea which includes chlamydia pneumoniae. It is clear even as noted by Margaret Hammerschlag MD an outspoken critic of the CPn MS connection, that we CANNOT culture persistent infections. They are invisible but still induce inflammation. THis is very plausible if considered the cause of the inflammation in MS that appears to have no trigger other than autoimmunity. It is totallly unproven at this point though some workers like Subramaniam Sriram MD at Vanderbilt University find chlamydia pneumoniae in MS brains often, others say it is not there even if they looked using DNA fragments as VU does.

This is the eternal question in MS. I am biased by my belief that the stealth pathogen idea is plausible in at least some cases of what we call MS.
Marie

Hi Lynda Carol,

I was interested in what I read into your post of the link between inflammation, a faulty immune system and the potential impact on the cardiovascular system.

Recently, I had a comprehensive medical checkup at a Bangkok International Hospital. My opinion was that the level of assessment was of the highest quality.

The doctors reported that apart from my MS (3 lesions on the upper spine, EDSS 6.5) I am in perfect health. All the organs, including my heart are OK. In fact, and ironically, for my age I am one of the healthiest males they have seen! The heart specialist commented that there is no linkage between MS and the muscle function of the heart.

My point is that in my case at least, there does not appear to be any correlation between MS and my general health level. Of course, there still could be lurking there, bacteria or viruses which have only impacted on my CNS.

Do you have any comment in the context of your post? Others might have a perspective, also.

Regards & thanks,
Phil.