Exploring the Gut-Brain Connection and Photosensitivity

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KarenB

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Been thinking about Kefir...when Jon lived in Asia, he drank Kefir every day at preschool -- it was part of the routine. Come back from playground, and sit down and drink Kefir while watching Tom & Jerry. A lot of Asian kids can't drink milk, but they can drink Kefir. Maybe that boosted his immune system and also kept his gut healthy, and perhaps his central nervous system. He also was virtually seizure free during his preschool years -- 1 seizure in 3 1/2 years, on just a low dose of Topamax.

It wasn't until we were in the States (and he wasn't getting his Kefir everyday), that the seizures got bad and he also got a lot of other illnesses. We gave him the "drinkable yogurt" available at the supermarket, but perhaps not as many good bacteria.
 

Keith

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I've made coconut kefir from the Thai Kitchen coconut milk and it's quite good; bought kefir grains online. Also made water kefir which is a different kind of grain, using beets like a beet kvass.
 

KarenB

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Ha ha! You're really liking that coconut milk. I took a look at what's available in the Bangkok supermarkets, and they don't have the Thai kitchen brand (which happens to be what's in the Ketocalculator), so I'll have to get the nutritionist here to put it in as there seems to be a lot of variety in protein, fat and carb levels with each product.

But that does sound pretty cool that Kefir can be made with other ingredients than milk. I'm guessing that because it's made with grains that it's a little high in carbs, but it might be worth working some into the diet somehow. I looked it up, and it does have lots more bacteria than regular yogurt, along with "good" yeast that goes after the bad yeast in the body.
 

Keith

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They're just called kefir grains, but it's not grain, they're little translucent globs of microbial communities.
http://www.marksdailyapple.com/homemade-coconut-milk-kefir/
http://www.passionatehomemaking.com/2010/03/how-to-make-coconut-milk-kefir.html

I'm not sure if making kefir from coconut milk alters potassium level somehow; could probably be used both ways for balance . . .

This business of light dependent potassium ion channels is quite a network of information and difficult to grasp, but it's a powerful construct explaining seizure disorder, perhaps especially photosensitive. One nuance I'm still trying to understand is influx and efflux of ions, leaving and entering the cell simultaneously. I'd have to read much more to understand and probably consult with experts; it appears potassium may leave the cell, but is blocked from entering . . . this allows calcium to enter (intracellular calcium) which stimulates the immune system, increasing macrophage activity along with inflammation. Magnesium comes into play . . .
 

KarenB

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yesterday, I checked on the ketocalculator, and actually the kefir is lower in carbs than regular yogurt (plain, unsweetened -- both made with milk). Not sure why that would be -- perhaps the kefir consumes more of the lactose, and thus reduces the sugar?

So...next trip to supermarket, will checking out if unsweetened kefir is available for sale. I know they have the fruit sweetened stuff.

At any rate, it must be an extremely healthy drink -- you'd get calcium and protein, plus all the probiotic qualities -- so really cool that this is given to preschool kiddies over in these parts.
 

Keith

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The mysterious rise in rickets seems instructive with regard to seizure, including photosensitive seizure, related to both malabsorption and potassium ion channels. Disturbing news in England the past few years and this recent article:
http://www.telegraph.co.uk/health/healthnews/9698670/Britains-bad-summer-will-see-epidemic-of-vitamin-deficiency-expert.html

As with vitamin D deficiency, rickets is normally attributed to poor diet and lack of sunshine in complete disregard of microbial imbalance as cause. Just as children are now born predisposed to obesity and diabetes, rickets is again rearing its ugly head. It's not about diet and sunshine per experts such as Dr. Michael Holick and all the professors quoted in the article. They are missing the microbial target.

Rickets is a known cause of seizure, yet no one yet understands the real cause of rickets:
http://www.sciencedirect.com/science/article/pii/S1875957212001052

Both gastrointestinal symptoms and opthamalic lesions including night blindness are known in rickets:
http://www.ijo.in/article.asp?issn=0301-4738;year=1979;volume=27;issue=4;spage=229;epage=229;aulast=Reddy

Intracellular calcium is known to be crucial for bone mineralization.
http://www.ncbi.nlm.nih.gov/pubmed/21440636
http://www.pnas.org/content/early/2012/08/08/1208916109.abstract

Vitamin D (calcitrol) is known to increase intracellular calcium which is responsible not just for bone mineralization, but increasing our innate immunity by stimulating macrophage activity, reducing microbial loads.

But intracellular calcium is not just about vitamin D which is why vitamin D resistant rickets is not a rare disorder.

Intracellular calcium is also generated by calcium activated potassium ion channels by calcium itself called Calcium Induced Calcium Release (CICR):
http://physrev.physiology.org/content/89/4/1153.full
jp.physoc.org/content/555/3/627.full.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC160467/

So, if potassium ion channels are blocked via previous posts here, it seems a possible explanation for the rise in rickets associated with seizure.

Compounding the problem or even causing it is imbalanced gut flora at root of vitamin D deficiency where microbes toy with vitamin D receptors:
http://www.urmc.rochester.edu/news/story/index.cfm?id=2923

This is also one reason zinc deficiency is so important as a zinc molecule is required at the base of the vitamin D receptor. This may actually be the most important function of zinc, also required for some antioxidant enzymes. Boron is another overlooked deficiency with regard to vitamin D deficiency as it somehow modulates D.
 
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KarenB

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Very interesting -- have we figured out yet what causes the potassium ion channels to be blocked?

Jon's definitely doing better with photosensitive seizures. He has not had a photosensitive seizure in 6 days (since the morning when he was looking at the Christmas tree lights). This in spite of being around lots of potential triggers. So...it seems the zinc and/or enzyme regime is working.

He did have some nocturnal seizures this past week, so we first fiddled around with his bedtime snack, and that didn't work, so then we tried reducing the zinc dose (zinc can both inhibit as well as trigger seizures -- 2 different actions on the brain), and that did the trick. Two nights (and days) seizure free. He was doing fine on the 75 mg a day, but when we went up to 150 mg/day he started having those nocturnal seizures, so on the half dose (which is still a huge dose) he's doing well with both photosensitive seizures as well as nocturnal seizures. This in spite of taking the Diazepam wean down another notch (.5 mg every other night -- almost completely weaned of that hated med).

We also added in probiotics again yesterday -- and this time no problems!! So we'll stick with the morning dose of that for 3 days, and then add in the evening dose.
 

Keith

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Good news. If potassium ion channels are 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. Toxins may be of gut, brain or other origin:
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

And intestinal malabsorption leading to deficiency of potassium and/or calcium may be a root cause . . . that's why I suggested coconut milk for additional potassium as well as broad antimicrobial function and alkalinity.

Cholesterol is also known to regulate ion channels, very complex stuff:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2891522/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2895485/

Maybe that year seizure-free after ampicillin had something to do with shifting flora which changed cholesterol and triglyceride levels affecting ion channels . . . still trying to learn about these things.

Relatedly, this 2010 study, seemingly very important, shows how microbial toxins can be a root cause of type 2 diabetes:
http://diabetes.diabetesjournals.org/content/59/1/172.long
(This would explain why gastric bypass surgery rapidly halts diabetes by removing infected section of small intestine, SIBO or gram-negative bacterial overgrowth.)
 
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Keith

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Karen, thanks for asking about what causes potassium ion channels to be blocked as this seems so crucial. As well as what's stated above, what may be even more important is adenosine.

Adenosine is known to interact with potassium channels, hence ATP-sensitive potassium ion channels related to brain, heart and pancreatic insulin ducts:
http://ajpheart.physiology.org/content/early/2010/10/01/ajpheart.00702.2010
http://www.ncbi.nlm.nih.gov/pubmed/2452599
http://link.springer.com/chapter/10.1007/978-1-4614-3903-5_26?LI=true (seems a controversial 2013 paper suggesting adenosine supplementation, opposite of allopurinol)

This brings me back to what I mentioned before: allopurinol
http://fn.bmj.com/content/97/3/F162.full
http://www.sciencedirect.com/science/article/pii/009130579290046I (hippocampus-optic nerve connected)
www.pnas.org/content/99/26/17072.full.pdf (sodium connections)

But here's the SIBO and general microbial connection along with LPS (microbial endotoxins): microbes including bacteria and protozoa use their own ATP to make adenosine in order to hijack our immune system, evading macrophages and even using our white blood cells as places to flourish!! I find that particularly outrageous. It's their pathway to virulence which is why allipurinol is not just used for gout, but also microbial infections and epilepsy. It's an "adenosine antagonist which inhibits glutamine release from excitatory neurons, but does not change the plasma concentration of other epilepsy drugs."
http://jem.rupress.org/content/206/11/2417.full
http://www.hindawi.com/journals/jtm/2012/650874/

Microbes may use their own adenosine to hijack macrophages sent out to kill them where the mechanism is altering potassium currents:
http://www.sciencedirect.com/science/article/pii/S0014489408001239
http://www.ncbi.nlm.nih.gov/pubmed/9673902 (allopurinol to the rescue)
 
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KarenB

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After 1 year of being on Keto diet, Jon's cholesterol levels were perfect, in spite of high fat diet. However, large amount of his fats were from olives, avocados, canola oil. I think there may be a lesson to be learned from that with regard to adults being on the Ketogenic diet for seizures. I think it can be done safely if the right fats are used.

Saw the GI doc and Pediatrician/Nutritionist yesterday. Jon had an Ultrasound & Xray of abdomen, which didn't show any abnormalities. Stool cultures came back negative for everything. Nutrition MD has added in calcium, as he hasn't a sufficient amount in his diet. I was thinking he was ok because his blood levels of calcium were fine, but she explained that the blood levels don't really give a clear indication of whether or not there is a deficiency. So...starting that today, and will see if it has an effect on the seizures.

Very interesting about the potassium and alleperonal.
 

Nakamova

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Things like calcium and magnesium are hard to gauge via blood levels, since the body will draw nutrients from other areas just to keep those blood levels stable. Your bones could be crumbling due to a calcium deficiency, but the deficiency wouldn't be reflected in your blood.
 

Keith

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Maybe it has to do with measuring intracellular vs. serum calcium. Similarly, RBC potassium tests measure what's inside of red blood cells as opposed to extracellular potassium in serum. Are there intracellular calcium tests available?

Based on my very simplistic understanding, intracellular calcium is key to the immune system as it stimulates macrophage activity, reducing microbial loads. I know of a famous doctor/researcher who actually routinely takes antibiotics, supposedly based on germ-free mice living longer! In the long run, of course, that's counterproductive as their immune systems are poorly developed: http://www.scientificamerican.com/article.cfm?id=species-specific-microbes-immune

Here's a 2012 paper detailing adenosine antagonists such as allopurinol stimulate intracellular calcium, though many other things can do this, as well:
http://onlinelibrary.wiley.com/doi/10.1111/j.1476-5381.1993.tb13444.x/abstract
 

KarenB

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Things like calcium and magnesium are hard to gauge via blood levels, since the body will draw nutrients from other areas just to keep those blood levels stable. Your bones could be crumbling due to a calcium deficiency, but the deficiency wouldn't be reflected in your blood.
Yes, that's exactly what Jon's doctor said.
 

KarenB

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The way Jon's doctor explained it is that only 2% of the calcium that is in your body is actually in the bloodstream. And...as Nakamova mentioned, the body will leach calcium from the bones to keep the blood levels constant. So...it seems that any sort of serum testing for calcium levels would be pointless (I wonder why they include them in many blood draws?)
 

Keith

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The role of glutamate in seizure is known; Dogtor J and Dr. Russell Blaylock have studied this and make it a priority including eliminating glutamate excess in diet.
http://www.ncbi.nlm.nih.gov/pubmed/7970002

Potassium channels are related to potassium dependent glutamate channels. Perhaps potassium channels altered by toxins (LPS) of gut origin affect glutamate channels. Potassium-selective glutamate receptors are known to be strikingly similar to inverted potassium channels. Maybe balancing gut dysbiosis, thereby lowering toxins while adding potassium to the diet (coconut milk, blackstrap molasses, dark greens) would help.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964903/
http://www.ncbi.nlm.nih.gov/pubmed/16434141

This may be part of the cascade responsible for now mysterious photosensitive seizure:
2010: A light-gated, potassium-selective glutamate receptor for the optical inhibition of neuronal firing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2915903/

Magnesium deficiency is a known factor in potassium deficiency (more than half of those with potassium deficiency also suffer magnesium deficiency). Magnesium also lowers inflammatory histamine. It's known magnesium deficiency leads to glutamate receptor hypersensitivity causing damage. It may even be a matter of brain development in the womb, i.e., not enough magnesium sites, indicating magnesium supplementation.
http://jasn.asnjournals.org/content/18/10/2649.full
http://fn.bmj.com/content/78/2/F116.full
http://tv.naturalnews.com/v.asp?v=8c501468ca914abee2d9395667d5f200
 
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KarenB

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Good article on the potassium/glutamate/photosensitive issue.

We started Jon on a magnesium supplement a while back. It certainly helped him sleep better at night, and also seemed to reduce seizures a little bit.

Jon's photosensitive seizures seem to be fading away. He had a seizure that may have been photosensitive a week ago. There seems to be some sort of trigger in the big room downstairs -- we thought it was the big screen TV, but didn't have that on. Just playing music and playing ping pong -- but the overhead lights are rather bright -- we have covered some of them with Chinese lanterns to mute the light, but need to buy some more. Hosting 2 parties this week, so hopefully we can get through without any seizures!!
 

kirsten

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Remember that seizures are exacerbated by anything that alters health even slightly. Where weather is concerned, I personally suffer from low blood pressure as a result of dehydration on hot days, and this worsens my seizures. When I keep myself hydrated with Power aid and rehydrate, I'm fine. Anticonvulsants sometimes cause severe electrolyte imbalances that can certainly cause seizures. I suffered from SIADH hyponatremia as a result of tegretol for three months. If your daughter is drinking a lot of fluids and taking one of the first line anticonvulsants, this could be the problem that is making her seize in hot weather. A sodium level will tell you if this is the case. Climate can have a range of effects on health. Some people suffer from seasonal effective disorder as soon as spring begins. The stress involved could worsen seizures. It would probably be enlightening for you if you took your daughter for a general check up on one of those bad days. Often, when background issues worsen seizures, it's a cinch to fix them.
 

kirsten

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Reading all you have said about photosensitivity has left me a little confused. I am extremely photosensitive, but only to flashing lights. Do those who are sensitive to flashing lights also respond to sunlight in the same way?
 

Keith

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kirsten, from what I've read in this thread as well as experience with my photosensitive seizing dog, both flashing lights and sunlight can be triggers.

Karen, I've got new thoughts about MCTs, wondering if coconut oil would a better source of MCTs as it contains the powerful antimicrobial (especially antifungal), lauric acid.

Coconut oil is being hailed as remedy in Alzheimer's disease where the mechanism is believed to be raising ketones, clean energy for the brain. But what if the true mechanism is via lauric acid in MCTs crossing blood-brain barrier? There is good evidence for Alzheimer's root cause as brain infection amid dramatic rise seen in fungal brain infections:
http://www.sciencedaily.com/releases/2010/03/100302201656.htm
http://www.ncbi.nlm.nih.gov/pubmed/18661680
http://www.plospathogens.org/article/info:doi/10.1371/journal.ppat.1002305

The same controversy applies to the misundersood ketogenic diet where ketones are actually lowered over time, yet still neuroprotective as the diet removes carbs feeding overgrowth; it may not be just about addition of fats as currently viewed. Coconut oil may be far more advantageous for gut health, as well.
 
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KarenB

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Keith's premise (as I understand it) is that there is a strong link between gut issues and photosensitive seizures (sunshine and seizures).

One way to treat overproliferation of the "bad" bacteria in the gut is the ketogenic diet -- which limits carbohydrates. Without the sugars from sweets and starches, the bacteria die off. Some other treatments for intestinal ailments (Crohns and Colitis) such as the Selective Carb Diet and Anti-inflammation Diet, also cut out sugar and most grains -- so, in essence they are a type of Ketogenic diet, even though the objective is not to go into Ketosis, but rather to eliminate foods that can cause inflammation or increase bacterial or yeast overgrowth in the gut.

But interestingly enough, the Ketogenic diet is also used to treat seizures. It's not known exactly why a high fat/low carb diet stops seizures, but it works just as well as meds (especially with certain types of seizures), and is especially helpful for children with intractible epilepsy who have gone through multiple meds without relief.

I just read another account on the Charlie Foundation -- a Mom gave her 2 year update on her son, who has Lennox Gestault Syndrome (a horrible progressive form of epilepsy believed to be incurable) -- he has gone from having up to a hundred seizures a day when initiating the diet to now 1 year seizure free. The diet worked a miracle for this little boy, and has for many children.

Research on how the Ketogenic diet works has focused on a variety of things: change of chemistry in the brain, lowering of blood sugar, release of certain enzymes, etc. But not a lot of attention so far has been giving to the gut-brain connection -- i.e. - treating the gut treats the brain.
 
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