Exploring the Gut-Brain Connection and Photosensitivity

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RobinN

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Keeping good thoughts during your tweaking Karen. I wish you much success.
 

KarenB

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Thanks, Robin.
The fish oil connection continues -- this past week
Monday 10/8 1 gram fish oil, 1 seizure
Tuesday - no fish oil, 3 seizures
Wednesday - 1 g fish oil, 1 seizure
Thursday - no fish oil, 4 seizures
Friday - 1 g fish oil, 1 seizure
Saturday - no fish oil, 3 seizures

This is quite interesting, because it's my understanding that it takes some time for the omega 3 to build up in the blood, and I wouldn't think that one day of going without would be that significant. But the last 6 days seem to be indicating that it perhaps does.
 

KarenB

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I found this helpful site that sorts out the research on different beneficial aspects of Omega 3 fish oils.

http://www.uofmhealth.org/health-library/hn-2843005#hn-2843005-uses

It may be helping Jon in at least 3 ways:

1) Anti-convulsive and neuroprotective effects

2) Studies found it helpful with both Crohns disease and Ulcerative Colitis -- seems like it promotes good gut health.

3) AND...photosensitivity!!! There is a condition called Polymorphous Light Eruption, which is a type of allergy to the sun -- people get rashes when exposed to sunlight or other UV light -- and one study found that fish oil was helpful with this condition. So...that begs the question...it it's helpful with one type of photosensitivity, could it be helpful with seizures triggered by sunlight?
 

KarenB

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Also found this helpful website on photosensitive epilepsy

http://www.epilepsymatters.com/english/faqphotosensitive.html

Some aspects that were interesting to me...more common sufferers are children (between age 8 to 20), and there seems to be a link with early puberty.

The "covering one eye" trick apparently really does work. It seems that the light needs to come in to both eyes. The site even suggests wearing an eye patch!! Also, polarized blue sunglasses (not even sure what that is) for both outside and inside where there's bright or flashing lights.

Sunlight, strobe lights, TV, and even certain patterns and contrasts can all trigger this sort of epilepsy.
 

epileric

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I found this helpful site that sorts out the research on different beneficial aspects of Omega 3 fish oils.

http://www.uofmhealth.org/health-library/hn-2843005#hn-2843005-uses

It may be helping Jon in at least 3 ways:

1) Anti-convulsive and neuroprotective effects

2) Studies found it helpful with both Crohns disease and Ulcerative Colitis -- seems like it promotes good gut health.

3) AND...photosensitivity!!! There is a condition called Polymorphous Light Eruption, which is a type of allergy to the sun -- people get rashes when exposed to sunlight or other UV light -- and one study found that fish oil was helpful with this condition. So...that begs the question...it it's helpful with one type of photosensitivity, could it be helpful with seizures triggered by sunlight?
Actually it said that there is not very good reason to assume omega 3 oils work well. The effects on Epilepsy, Crohns Disease & uncerative Colitis were all given 2 stars. According to the site 2 stars means:
Contradictory, insufficient, or preliminary studies suggesting a health benefit or minimal health benefit.
Photo sensitivity was given only 1 star. 1 star means:
For an herb, supported by traditional use but minimal or no scientific evidence. For a supplement, little scientific support.
Also the photo sensitivity this site refers to is not neurological but dermatological photo sensitivity http://www.uofmhealth.org/health-library/hn-1248007#hn-1248007-need-to-know
 
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Keith

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In my experience with fish oil with my dog, there's such thing as too much of a good thing, once overdoing it and causing problems. Some science backs it up:
http://cancerres.aacrjournals.org/content/70/20/7960.long

Fish oil seems to be often used along with glucosamine sulfate; the more I learn about glucosamine, the more I like. Earlier I mentioned its antihistamine effect via heparin production which releases DAO enzyme needed to degrade histamine. It's also said to make hyaluronic acid important to eye health.

Dogtor J today informed me it's made into sialic acid in the liver which binds to cells and blocks inflammatory lectin. He talked about it on this forum a few years ago and a lot on his own site.

So, glucosamine sulfate seems like a good thing, but may be just a band-aid in light of microbes degrading sialic acid with their own enzymes, then making their own lectins which bind to our cells . . . wreaking havoc including the blocking of glucose which leads to diabetes. Microbes such as bacteria coat their own bodies in sialic acid, apparently stealing it from our cells.
http://www.ncbi.nlm.nih.gov/books/NBK1907/
http://mic.sgmjournals.org/content/153/9/2817.full
http://www.ncbi.nlm.nih.gov/pubmed/2885220


I've read glucosamine sulfate works even better used along with MSM. People with glaucoma find it reduces IOP (intraocular pressure).

Note: Bee propolis is said to allow fertility in endometriosis by inhibiting microbial adhesion, i.e., e.coli:
http://onlinelibrary.wiley.com/doi/10.1002/ejoc.201100407/abstract

Also the case for honey and royal jelly:
http://www.ncbi.nlm.nih.gov/pubmed/18043624
 
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Keith

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Dogtor J has shown himself to be quite a quack.

Personally I would be careful of anyone who thinks that what works for a dog would automatically work for humans, not to mention all the other things he does.

http://www.coping-with-epilepsy.com/forums/f39/diet-alleviating-other-neuro-symptoms-16866/
Eric, I realize there's a lot of pressure in epilepsy which is why I choose to cut you plenty of slack. But I will say what you've said here is insensitive and flat out wrong. Moreover, you're belittling the actual content of this discussion with meaningless tangents. Good day to you.
 

epileric

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I'm sorry you see it as belittling but when someone gives medical advice their professional background is very relevant.

I feel that when a veterinarian gives advice to humans we should be aware that he is a vet & not a human doctor and that he is likely to be very misleading as he has shown us.
 

Dutch mom

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Discussion is about different personal opinions, especially when it is about alternative treatments. I have no problem with people having different points of view as long as no other member is being attacked as a person.
 

Keith

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Karen, there's also a lot of glucosamine in bone broth along with aforementioned gelatin:
http://myhealingkitchen.com/medical...the-glucosamine-bone-broth-is-more-effective/
http://foodforkidshealth.com/bone-b...t-for-your-infants-gastrointestinal-concerns/

Cooking as long as 24 hours with a splash of vinegar helps draw out nutrients. I didn't know you can also add egg shells to make broth as the membranes are known to have glucosamine.

Like so many things including fish oil, there's such thing as too much glucosamine according to this study related to diabetes:
http://www.sciencedaily.com/releases/2010/10/101027111349.htm

More and more, I like the "let food by thy medicine" approach.
 
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KarenB

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With regard to the star system in the U. of Mich site -- yes, 2 stars do indeed indicate minimal evidence or possibly conflicting evidence, but that doesn't mean that the fish oil doesn't work for that condition - just that there hasn't been enough large studies to verify the results of smaller studies. And...if you read the summaries below each chart, you will find that some of the initial studies have been quite promising.

For instance, with Crohns disease:
"A two-year trial compared the effects of having people with Crohn’s disease eat 3.5 to 7 ounces of fish high in EPA and DHA per day or having them eat a diet low in fish.56 In that trial, the fish-eating group had a 20% relapse rate compared with 58% among those not eating fish".
AND
"In a double-blind trial, people with Crohn’s disease who took supplements providing 2.7 g of EPA/DHA per day had a recurrence rate of 26% after one year, compared to a 59% recurrence rate among those taking placebo."

Personally, after reading those studies, I wouldn't come to the conclusion that fish oil is not helpful for Crohns.

In the (admittedly very small) study done on retarded adults with epilepsy, there was a DRAMATIC turnaround in these patients. I had already read that study, and, as I recall, 4 out of the 5 patients became seizure free, and the 5th patient had like a 90% improvement. Once again, as the mother of a severely retarded child with epilepsy, I would NOT come to the conclusion from this study that fish oil was a useless therapy.

Furthermore, the AEDs that Jon are currently on are only providing control of tonic clonics. His tonic seizures have not decreased (in fact, they increased after starting Zonegran and Diazepam). What they HAVE done is destroyed his appetite, given him diarrhea, hallucinations, hyperactivity, and psychotic symptoms including head banging and other self harming activities.

My charting indicates that the fish oil is more helpful for Jonathan than the AEDs; however, will need more time to see if the trend continues.
 

epileric

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Sorry Karen, I think that you misunderstood me.

I was not saying that any of those things won't work or are impossible but I would be very careful when assuming they do work when they have not been confirmed one way or another yet.

Even if some studies show promise in science they must be repeated.
 

KarenB

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Yes, I know we have to be careful with supplements -- and not overdosing. I'm very careful about researching the upper tolerable amounts of everything that Jon takes. With regard to fish oil, he only takes 1 gram a day, which is a safe amount for his age and weight. And I had actually reduced that to 1 gram every other day, because of my concerns about blood thinning (since he's also on Zonegran, which thins blood). But preliminary results of reducing the fish oil seemed to cause an increase in seizures. But, it may just be coincidence, so we will chart this longer and see what happens.

If we do find a continued strong link between fish oil and reduced seizures, then I intend to discuss with his neurologist reducing the Zonegran (which is also causing issues with acidosis) to 50 or 75 mg a day (he's currently on 100) and giving the fish oil on a daily basis. I believe that a lower dose of Zonegran will continue to control the tonic clonics (it did when he first started at a lower dose, and titrating up to 100 did not decrease the tonics), but will perhaps ease some of the negative side effects.
 

KarenB

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With regard to preliminary or small studies ... this is my take...

If the preliminary results are good

AND

whatever the therapy was is considered generally safe

WHY NOT???

Why should I wait another 5 or 10 years for more studies when preliminary evidence indicates that something like fish oil or turmeric could indeed be helpful, and mostly likely would not cause any adverse effects?
 

epileric

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Sorry, I didn't say anything about dosages overdosing nor did I mean to imply it.

What you say you're doing with Jon sounds good & I hope he does well.
 

epileric

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As far as the studies go, I never meant to say not to try anything, just to realize that they are not proven treatments.
 
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KarenB

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With regard to dosage, I was referring to Keith's concerns about overdosing fish oil.
 

epileric

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Eric, I realize there's a lot of pressure in epilepsy which is why I choose to cut you plenty of slack. But I will say what you've said here is insensitive and flat out wrong. Moreover, you're belittling the actual content of this discussion with meaningless tangents. Good day to you.
You are right I did overstep the boundary by calling him a name & I apologise for that.

I do feel that DogtorJ's actions correspond very well to other people who promote fraudulent practices.
 
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