Exploring the Gut-Brain Connection and Photosensitivity

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KarenB

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Everything Jon takes is with a meal. I've thought about papain, but I know that it can sometimes contribute to diarrhea (in China and Thailand, they eat green papaya stir fried with a little pork (something like a squash), but warn not to eat too much or you'll get diarrhea -- perhaps because it's green. But I was thinking since Jon has a hard time chewing pork and beef, about letting the meat marinate with a little papaya overnight -- it tenderizes the meat. Papaya is actually a good fruit for the keto diet because it isn't so high in carbs.

At any rate, either the zinc or the enzymes or getting out of acidosis (or all 3) seem to be working well. Still not completely diarrhea free, but Jon suddenly has an appetite again (after 3 months of not wanting to eat at all) and loads more energy. Seizure control was a little low for a few days, but now seems to be picking up again. No photosensitive seizures in over 5 days since starting the zinc and pancreatin (just some nocturnal seizures -- and those went away after I removed banana from his bedtime snack - too many carbs).
 

Keith

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I wonder if there's a potassium connection related to the banana. I've just begun to scratch the surface of potassium. There's been some progress about potassium ion channels and seizure activity. And maybe more than one new AED based on either activating or inhibiting potassium ion channels. There's also research about effect of light and potassium channels and circadian rhythm. Eye issues such as dryness are associated with potassium deficiency. Potassium is also required to make stomach acid, perhaps the most crucial part of balancing gut dysbiosis.

Whether it's high potassium, as early studies show, or potassium deficiency, I don't know. I've read the most dangerous aspect of diarrhea is loss of potassium. Celiac disease is known to cause potassium deficiency leading to neurological problems even when there are no gut symptoms. Then there's also intracellular microbial dysregulation of potassium ions channels, i.e., leishmania altering potassium in macrophages which they inhibit and even use to reproduce (now that's heinous!).

Maybe the time and type of potassium consumed is important. Two other foods even higher in potassium than bananas are coconut milk (Thai canned is probably best in the world, very low carb and high saturated fat, makes a nice treat, too.) and also blackstrap molasses, a very nutritious, unique food, by-product of sugar manufacturing from the third boil. Relatedly, activation of brain potassium channels is known to lower glucose production in the liver.
http://www.nature.com/nm/journal/v18/n11/abs/nm.2987.html
http://www.eurekalert.org/pub_releases/2011-11/aeco-esi110711.php
http://jn.physiology.org/content/103/2/632.full
http://www.jneurosci.org/content/30/15/5167.long
http://www.sciencemag.org/content/337/6096/839.short
jgp.rupress.org/content/68/4/359.full.pdf
jeb.biologists.org/content/94/1/345.full.pdf
http://www.sciencedaily.com/releases/2008/06/080612075331.htm
http://www.webmd.com/epilepsy/news/20110613/fda-oks-new-epilepsy-drug
http://www.sciencedirect.com/science/article/pii/S0014489408001239
http://www.popsci.com/science/article/2012-07/chemical-injection-blind-mice-can-see
http://www.sciencedaily.com/releases/2012/07/120725132210.htm (UV light opens potassium ion channel in eyes)
http://www.slas.ac.cn/upload/20120820-2.pdf
 
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KarenB

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Potassium levels have been consistent with Jon because it's in his Cytra-K crystals that he takes as a buffer. However, I didn't give them to him in past 2 weeks when he was having a lot of diarrhea, as they can irritate the bowels -- gave baking soda instead (which seemed to work better, actually). So...his electrolytes this past week were a little low in potassium. Not too low, just on the low side of normal.

I really think it was the carb levels in the banana -- there's a lot of sugar in banana. I usually don't give it to him for that reason, but gave it to him last week as it's easy on the gut and a good potassium source (since wasn't giving the Cytra-K).

Interestingly enough, the Specific Carb diet (for gut inflammation) and the Inflammation diet and the anti-acidosis diet, and this other diet I found that deals with a lot of potential food intolerances -- they all cut out or severely restrict grains and sugar. And this is also part of the Ketogenic diet.

Another seizure free day -- in spite of going to mall on 2 consecutive days and having bright flashy lights that were potential seizure triggers.
 

Keith

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Agreed completely about carbs. I do, however, find the potassium connection to photosensitive seizure very, very interesting. And I never say "very, very." Maybe coconut milk, the thick kind in cans, would be a lower source of carbs and even higher in potassium.

What's the "mega-dose" of zinc you're using? How many mg/day? I wonder if boron would also be a good thing.

As posted earlier, carbs are inflammatory because they feed microbial overgrowth producing the basis of triglycerides: glycerol. The fats are then oxidized producing inflammation, hence antioxidants. The notion that carbs are the basis for high cholesterol is difficult to grasp:
http://coolinginflammation.blogspot.com/2009/07/low-carbs-lowers-triglycerides.html

In Celiac disease where seizure is a symptom, experts at the University of Chicago Celiac Disease Center still believe the cause is genetic and that the starchy-sweet gluten-free diet is the only treatment. They are impudent with incomplete biopsies (they don't test for any of the usual suspects) and would never even consider use of probiotics. But the tides are changing as people begin to see themselves as part of the web of life:
http://www.ncbi.nlm.nih.gov/m/pubmed/23134620/
 
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Nakamova

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Another seizure free day -- in spite of going to mall on 2 consecutive days and having bright flashy lights that were potential seizure triggers.
That's terrific! Sounds like your latest regimen is paying off.
 

Chaz1

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Karen, thats simply wonderful news.......

thanks so much to both you and Keith for providing such detailed info, not easy reading but I sm learning from you 2 :)
 

KarenB

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Actually, my nutritionist here tells me that coconut milk is a large part of the Ketogenic diet for the Thai kids (who may not be able to tolerate the dairy fats and also it's within their budget). Coconut milk has protein and fat and not so many carbs, and a lot of the fats in coconut oil are the MCT (medium chain triglycerides) which are easier to digest and help with higher ketosis and seizure control. So...she said that her dietician can help us with some menus using the coconut milk (actually, it's already in the Ketocalculator, so can do it myself).

The only thing is that I've noticed for myself that when I drink coconut milk (straight from the coconut) is that I get diarrhea. I don't know if it would have the same effect on Jon. But I'm thinking about giving it a try.

Unfortunately, Jon had a seizure last night, after a good run. We were decorating the Christmas tree, and I thought we'd bought these tiny soft lights, but when they were plugged in, they were so bright they looked like airport runway lights. And we had some Christmas videos on the big screen TV. He actually didn't have the seizure until he headed upstairs (after being downstairs with the bright lights and TV for about an hour) -- so it may or may not have been photosensitive.

But...heading out today to find some softer lights for the tree.

Jon's taking 75 mg of zinc with breakfast and again at supper. This is WAY higher than the normal daily allowance. But his doctor said he was showing some clinical signs of zinc deficiency (gums and fingernails, not to mention the chronic diarrhea) -- apparently blood levels don't give you an accurate reading. This...in spite of getting zinc in his supplements. Possibly an absorbtion issue? At any rate...this is a short term high dose...for 2 weeks...to boost immune system and clear up diarrhea.
 
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KarenB

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I think the reason Celiac is believed to have genetic connections is that there are higher rates in certain groups of people (for instance, Down Syndrome), and also there are genetic markers for it, I think.

Interesting that several intestinal diseases -- Celiac, Crohns, and even Rotovirus in young children (at least the Asian strain) all have seizures as potential symptoms. Also, some association with Ulcerative Colitis and seizures. I believe the medical literature points to the intestinal disease causing cerebral vasculitis which in turn causes the seizures.
 

Nakamova

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Zinc deficiency can cause a decrease in appetite -- wonder if that was one of the factors (along with the Zonisamide) for his appetite issues? Zinc can help with treating diarrhea, so maybe that will be an added benefit.
 

Keith

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Karen, the coconut milk I'm referring to is very thick and creamy like this brand. It's actually quite good plain: http://www.thaikitchen.com/products/coconut-milk/coconut-milk.aspx

One benefit to coconut oil and I believe milk, as well, is lauric acid which is antiviral: http://www.healthy-oil-planet.com/lauric-acid.html

Here's info about blackstrap molasses which I'm looking forward to trying myself:
http://www.whfoods.com/genpage.php?dbid=118&tname=foodspice
http://www.naturalnews.com/026296_molasses_health_sugar.html

I wonder if zinc-carnosine provides the same benefits of zinc along with the added GI benefits its known for:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856764/
(carnosine is also known to slow kindling in amygdalas of the brain)
 
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Keith

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More on potassium ion channels as related to seizure including photosensitive seizure, I see Robin and Bernard talking about this in 2006:
http://www.coping-with-epilepsy.com/forums/f22/ion-channels-sodium-potassium-brain-686/

News in 2010, "Blocking potassium channel in mice brains causes seizures"
http://www.bcm.edu/news/item.cfm?newsID=2547
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2928878/

Chapter in 2012 book:
http://www.ncbi.nlm.nih.gov/pubmed/22787644

I don't really understand the potassium-sodium balance, but I do know sea salt is a good addition to the body. And, yes, Karen, the pink Himalayan type from Pakistan as you pointed out earlier. It contains potassium, magnesium and other trace minerals, as well.

Related to photosensitive seizure, UV light is known to regulate (open) potassium ion channels in eyes:
http://www.sciencedaily.com/releases/2012/07/120725132210.htm

If the potassium ion channel is somehow blocked via microbial toxins of gut origin (LPS), then UV light may cause hyperexcitability. Amazingly, here's a study showing intracellular LPS inhibiting ("drastic decrease") potassium channels. Whether the toxins are of gut, brain or other origin, I don't understand.
http://www.ncbi.nlm.nih.gov/pubmed/15389581

Zinc modulates (slows) potassium ion channel current:
http://www.cell.com/biophysj/abstract/S0006-3495(01)75686-X
 
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KarenB

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Zinc deficiency can cause a decrease in appetite -- wonder if that was one of the factors (along with the Zonisamide) for his appetite issues? Zinc can help with treating diarrhea, so maybe that will be an added benefit.
Yes, Nakamova -- we saw an almost immediate increase in appetite -- it's almost back to normal now, in spite of still being on that high dose of Zonegran.

And it seems the diarrhea has cleared up for now as well.:clap:

Only 1 seizure in 5 days -- not bad -- beats 1 or 2 every day:banana:

Headed out to mall yesterday and got a little tree with fiber-optic lights (very muted) for the upstairs sitting room (where Jon spends most of his time) and muted colored lights for the other tree. Hopefully we can get through the holidays in festive mode without too many seizure triggers
 

KarenB

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Karen, thats simply wonderful news.......

thanks so much to both you and Keith for providing such detailed info, not easy reading but I sm learning from you 2 :)
Thanks Chaz!

How is your son doing these days?
 

KarenB

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Keith -- I'm not sure if the "Thai kitchen" coconut milk is available here in Thailand -- ha ha!! But there's all sorts of coconut milk on the supermarket shelves -- so I think I'll have to ask the Nutrition doctor which brand she recommends (and also see if she can get that brand put into the Ketocalculator -- since I would assume that different types of coconut milk have different ratios of fat, carbs, and protein).

Regular milk is hard to work into the Keto diet because it is high in sugars. Also, the lactose can sometimes cause intestinal inflammation -- especially after a viral infection. The Specific Carbohydrate diet recommends only dairy products that have been fermented (which reduces the lactose) -- such as cheeses and butter and yogurt. We do use cream, which is very low in lactose.

My Nana used to swear by blackstrap molasses (and she lived to be 97 -- with an active life right up to the end). Alas, can't work that into the Keto diet.

You had mentioned Papain a while back -- I just checked his supplements, and he actually gets 3 mg. of papain a day in that.

Very interesting info on the potassium. Jon's back on his potassium cytrate crystals.
 

Keith

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I'm just now learning about potassium citrate crystals, normally used to prevent kidney stones (the oxalate connection discussed earlier).

What I don't know is if this form of potassium is good for bioavailability. Coconut milk and blackstrap molasses (and banana, perhaps in smaller amounts due to high sugar; some people eat the banana peel as it's actually higher in nutrients than the flesh, easier to eat when very ripe) might be a better way to absorb potassium and also not alter calcium levels which the citrate crystals may be meant to do for stone prevention. Maybe both crystals and coconut milk would be a good thing. People are eating half a can of the thick coconut milk at a time. There are different, also powerful properties in virgin coconut oil (VCO).
Note: diarrhea is a side effect of potassium citrate crystals.

Potassium ion channels are apparently very serious business in epilepsy. I don't mean to scare anyone here because good health is difficult enough without epilepsy. Here's what looks like a very important 2010 paper about potassium in epilepsy and heart health. I stumbled on it yesterday and would be remiss not to share it:
http://www.jneurosci.org/content/30/15/5167.long

Here's more research regarding potassium ion channels in the retina, all way over my head, but the point is that potassium channels in eyes is fairly well studied, perhaps not yet in relation to photosensitive seizure:
http://www.ncbi.nlm.nih.gov/pubmed/9695793
http://www.ncbi.nlm.nih.gov/pubmed/1330655
http://www.sciencedirect.com/science/article/pii/0006899382904590
http://www.ncbi.nlm.nih.gov/pubmed/23110755
http://jp.physoc.org/content/521/3/637.long "potassium channel activation was dependent on extracellular calcium."
http://europepmc.org/abstract/MED/2785716/reload=0;jsessionid=WlXOmy1MrroioXMPoXL0.6 "light-evoked potassium increase within the retina"
http://www.ncbi.nlm.nih.gov/pubmed/9685198
http://pubs.acs.org/doi/abs/10.1021/bi0618058
http://jn.physiology.org/content/96/5/2792.short
http://www.ncbi.nlm.nih.gov/pubmed/11375491 (protective role)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2322935/ (general CNS overview including retina)

Here in 2010 they've studied gene mutation of potassium ion channel contributing to epilepsy:
http://www.pnas.org/content/108/13/5443.full
My problem with focus on genes is microbial-gene interaction is not taken into account. Microbes turn our genes on and off like light switches. One example is Celiac gene testing where results can change rapidly after going on a good diet which shifts flora, normally gluten-free in Celiac, still not optimal as it's high sugar/starch.

Here's a 2009 study about UV light causing seizure and potassium ion channels affected:
http://144.206.159.178/FT/CONF/16425096/16425165.pdf

1989, during seizures, extracellular potassium accumulation reaches levels that exceed 10-fold changes from baseline:
http://www.ncbi.nlm.nih.gov/pubmed/2523337

2011, FDA approves first potassium channel opener to treat seizures:
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm258834.htm

Between excess histamine of gut and brain origin causing inflammation of optic nerve, oxalate crystal deposition of gut origin due to malabsorption/SIBO and perhaps especially potassium flux related to microbial interference/malabsorption, it's quite a recipe for photosensitive seizure.
 
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Keith

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Stop the presses! New optogenetic research about potassium and epilepsy is somehow being interpreted by this author recommending a low potassium diet:
http://www.sciencemedicine.org/content/4/161/161fs40.abstract

This is the new study in question:
http://www.ncbi.nlm.nih.gov/pubmed/23147003

videos from the study authors:
http://www.eurekalert.org/multimedia/pub/49790.php
http://www.eurekalert.org/multimedia/pub/49791.php

Perhaps the interpreter recommending a low potassium diet is under the impression that lower potassium would mean less potassium blocked from leaving the cell; still trying to figure that out . . . it doesn't seem to be a good recommendation. Especially interesting is the use of microbial toxins of two types in the experiments, one light sensitive.
BBC report: http://www.bbc.co.uk/news/health-20297386
 
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KarenB

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I think Jon is absorbing the potassium well from the potassium cytrate, because his potassium levels (his electrolytes are usually checked once a month or more) have been good until the last reading -- in the 2 weeks prior to that blood draw, I had not given him the Cytra-K because he was recovering from the stomach virus, and, as you mentioned, the potassium cytrate can irritate the intestinal walls and cause diarrhea. So, at the last blood draw, his potassium levels were normal, but on the low side of normal.

I went back and checked his (seizure/food/meds/kitchen sink)log, and the lowered potassium levels did not seem to enhance seizure control -- in fact, the opposite seemed to be true, and he had better seizure control when Cytra-K gradually reintroduced (however, at the same time we had just added in the pancreatic enzymes and zinc).

Since there's mixed messages about the implications of potassium and seizures, it would perhaps be wise at this point to opt for a moderate potassium intake -- neither high nor low. Since the baking soda regime seemed (inexplicably) more effective than the Cytra-K for managing acidosis, we're doing a trial with a reduced dose of Cytra-K and 1/8 tsp of baking soda in water twice a day. He'll get his levels checked again in a week, so we'll see how that works with the acidosis.

After a quiet 5 days with only 1 seizure, and several days with normal BMs, we introduced 1 dose of probiotics yesterday. Wow! 3 seizures in 24 hours. The last one (this morning) was definitely photosensitive (he was fixated on the Christmas tree -- even though the lights are the very muted fiber-optic, I had only 1 lamp on in the sitting room, so it was in a bit of a dark corner).

So...probiotics and seizures...if anyone doubts the gut-brain link, I would like them to explain how introducing "good" bacteria into the gut can trigger seizures. I remember you mentioning the same experience with your dog, and have read numerous anecdotal reports on the forums -- especially with kids. Even Jon's GI doc indicated that probiotics could trigger seizures in someone with epilepsy.

So...the question is WHY do probiotics trigger seizures? Apparently, the "die-off" of the "bad" bacteria, and especially fungi (Candida, among others), release toxins that can impact the central nervous system. I was a bit surprised to see such an immediate effect -- thinking that it would be around the 3rd day that we'd see the reaction.

As I was doing some more research on this, I came across this article in the Epilepsy Therapy Project
http://professionals.epilepsy.com/page/infectious_fungal.html

According to this article, various fungal infections (and they have a list of which ones) are implicated in epilepsy!! Has this come up yet in discussions? I don't remember, but it may have been that I was sleep deprived or in the midst of a crisis with Jon and missed it.

The article lists which individuals might be especially at risk, including premature birth and compromised immune system. Jon was born prematurely and most children with Down Syndrome have compromised immune systems. The article also mentioned "chronic meningitus"-- of which I have never heard.

So...definitely food for further thought and research.
1) Implications of fungal infections on photosensitive seizures (as well as other types)
2) Implications of fungal "die-off" due to probiotics and/or anti-fungal meds on photosensitive and other seizures
3) Implications of fungal infections on chronic diarrhea

At any rate, what we're going to do with the probiotics is let the present "toxin release" from bacteria/fungal die off work it's course, and then when things go quiet again (seizure wise), we'll introduce the probiotic again.
 

KarenB

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Probiotics can ease inflammation caused by high-fat diet
http://www.ncbi.nlm.nih.gov/pubmed/23211714

Probiotics have anti-depression & anti-anxiety properties, which involves the vagus nerve and GABA. The probiotic Lactobacillus rhamnosus increased GABA reception in the cortical regions of the brain and reduced in the hippocampus, amygdala, and locus coeruleus
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3268265/
http://www.ncbi.nlm.nih.gov/pubmed/21876150

gut bacteria on brain functions and the implications for probiotic
http://www.ncbi.nlm.nih.gov/pubmed/23202796

Probiotic helpful for treatment of autoimmune encephalomyelitis (post-viral infection encephalitis)
http://www.ncbi.nlm.nih.gov/pubmed/21970527
 

Keith

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I keep thinking about that year seizure-free after ampicillin, which I don't believe is antifungal, but could be. Maybe the effect is indirect as lowered bacteria give fungi some peace (bacteria eat yeast) and they don't dysregulate the immune system. Fungal DNA is strikingly similar to human DNA suggesting they hold the key to our locks, see here:
http://articles.latimes.com/2012/jun/08/science/la-sci-sn-fungus-irritable-bowel-20120608

So many of today's dangerous food allergies such as peanut can be explained by antifungal properties. Why should 25% of Europe now be allergic to carrots?

The problem with antibiotics is they allow yeast overgrowth. Virgin coconut oil (VCO)is supposedly a good thing for this problem . . . and also apple cider vinegar (ACV), the raw type like Bragg's.

With potassium levels, maybe the real issue is what's inside the cell, not the serum testing. This is what RBC potassium testing is apparently about, measuring potassium in red blood cells. I don't know if more dietary potassium can open potassium ion channels, but here's someone where that helped: http://www.stopthethyroidmadness.com/potassium/
(lots of good links within)

Here's what may be an important paper in optogenetics, an exciting science which doesn't seem to factor-in microbial toxins of gut origin, yet they're used in experiments to induce response:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1447674/

Optogenetics educational video:
 
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KarenB

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Hard to tell what bought us that blessed seizure free year -- a 3rd of it without meds. It could have been that the diet kicked in (he'd been on it for 6 weeks at that point). It could have been the ampicillan knocking out SMBO.

The year prior to that seizure free year, he was constantly ill (after being remarkably healthy for the first 6 years of his life other than seizures). He had recurring ear infections (which he'd never had before), pneumonia, a couple bouts of stomach flu, etc. He was on quite a bit of antibiotics that year (and he'd hardly had any antibiotics before that). We had come back from Asia, and he was living in the U.S. for the first time -- apparently there were a lot of viruses and bacteria he'd not been exposed to.

During the seizure free year -- he was really healthy again. No visits to the pediatrician that whole year except for his annual checkup, and an outbreak of hives (never found out what the allergic factor was with that -- perhaps ant bites).
 
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