Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Can certain foods trigger seizures in those who have seizures from Lyme/coinfections?
I already avoid artificial sweeteners, MSG & gluten, and am trying as hard as I can to eat only organic, and certainly trying to eat non-GMO.
My dietary restrictions are: No gluten, No corn, No soy, No tree nuts/coconut, No sulfur/sulfites (eggs, cruciferous veggies like broccoli or kale, animal flesh (fish & shellfish, beef, chicken, pork, etc.), garlic/onion, preservatives), low ammonia (low protein).
I'm trying to get back into eating real food after not being able to eat anything for over a year, so I can get off of IV food (TPN). So far, I've been ok with zucchini, carrots, potatoes, pears, ginger root, and parsley.
But in the last couple days, I've started having seizure-like episodes again and suspect it is due to either a new supplement, or some food I've tried in the last couple days (brown rice, tomato, organic grass-fed butter, oregano, fenugreek, thyme, andrographis).
Thoughts, comments welcome. Thanks.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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GretaM
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Member # 40917
posted
Oh razzle! I'm so sorry you are going thru the seizure episodes again.
I don't know the answer to your question.
I remeber how badly I reacted to rice a year back.
And then when my doc and I were trying to figure out where my continued mycotoxin exposure, rice was mentioned as being a possible culprit.
The Better Health Guy has a blog write up about mycotoxins. On the summary near the end of the letter, it lists foods commonly contaminated with mycotoxins.
Not sure if this is what is causing your episodes, but might be something to look into.
Hope you find the culprit causing this for you soon.
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- organic grass-fed butter - should be excellent for you. A good source of CLA (I mentioned that below so disregard my question as if you are getting that. It's in the butter, if from grass fed, free range cattle.
While andrographis is wonderful to help minimize seizures for me - one of the best I've found, actually,
there was another well researched poster here some time ago for whom andrographis made seizures worse.
I would stop that & see how you do, although you are on a very low dose, it just may not be right for you, especially considering the likelihood of blood sugar issues due to the extra low protein diet you describe.
Andrographis can lower blood sugar. Protein, about 20 grams with each meal is what helps keep blood sugar stable. Without adequate protein from whole food sources that also contain good fats (fish / eggs / meat), this herb may cause it to drop.
As for other foods: foods rich in glutamine / glutamic acid can lower seizure threshold.
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)
Seaweed has its own natural MSG and can be very excitatory
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all). -
[ 11-19-2014, 01:39 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, I see you have been unable to eat whole foods for over a year and must rely on TPN. I hope there is some way to alter your nutrient intake and sources of that -- or preparation.
I know you have a good reason for avoiding eggs & animal protein but those are the very foods that helps reduce seizures for me.
I could not get enough varied protein and other specific nutrients from just legumes / rice. Not even close. It was just not possible for MY body.
I was vegetarian for a long time. Only when I added back in fish and animal protein did my brain really feel better feed. Salmon & Sardines, especially.
Do you have an allergy to fish / meat / eggs? Bad reactions? If about sulfur/sulfites, is there no other way besides avoiding such a wide range of protein?
Do you supplement with TAURINE and CL (conjugated linoleic acid) as in free range beef)? Those are not in plants to the degree our brains and eyes require. Be sure to supplement.
I see you just started with organic free range butter. Good for the CLA in it.
Taurine deficiency can cause seizures.
Insufficient protein (about 60 grams a day, 20 each meal and a little at each snack) can also create issues with blood sugar with highs and drops, either of which can trigger seizures.
CAN YOU PUREE MEAT / MASH SALMON? When my mouth has been full of ulcers, mashed salmon worked very well for me. Pureed chicken, too, in a soup.
Whatever reason that seems to require you have low protein . . . seems there must be another way to approach that problem. A brain requires protein, all cells require it. Those with chronic infections require more, each day, than the average person.
This will work its way out, really. Rest well. -
[ 11-19-2014, 02:31 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Thanks for the replies.
More info:
I cannot eat eggs or animal flesh in any form (fish/shellfish, beef, pork, chicken, turkey, etc.) - it is not a texture issue, I get anaphylaxis from the sulfur/sulfites (sulfur amino acids) in the meat & eggs. Taurine is a sulfur amino acid, so I can't take much of it, if any.
I'm ok with small amounts of organic skim milk, but am holding off adding that back to my diet now because it is too difficult for me to digest right now, even though I do take digestive enzymes that include the enzymes for milk/lactose.
I know I have a high carb diet, but these are the foods I can tolerate best (always have, even before Lyme; I think it is a genetic reason = methylation genomic variants).
I am still getting amino acids in my TPN right now. I have never done well on a high protein diet ever since birth. I believe this is because my body cannot properly process sulfur amino acids.
I ate an almost vegan diet (the only animal products I ate were butter and honey) in college and did not have seizures then. If anything, I felt my best then.
Before going near-vegan, I had shaking chills with severe nausea & sometimes vomiting nearly every night. Reducing sulfur amino acid intake dramatically reduced these episodes.
Every time I get a sulfite reaction, I get the same shaking chills and nausea/vomiting, and now also swelling in my throat, etc. (i.e., anaphylaxis).
The reason I have to have a low protein diet is two-fold: I have severe reactions to sulfur/sulfites/sulfur amino acids and I have too much ammonia (from Lyme and methylation variants MTHFR A1298C & CBS C699T).
My body cannot detox either of these things (sulfur, ammonia) well, hence they tend to build up and make me very, very sick.
The best way for me to help my body with this issue is to reduce exposure to sulfur containing substances, and ammonia-generating proteins. I have not seen enough help with just using yucca & molybdenum -- I need the low protein/low sulfur/low ammonia diet too.
I believe my stomach stops working when ammonia overload depletes BH4 (used by the body to detox ammonia) to a certain point. I have a history of these stomach crashes, and I don't want to have them any more.
TPN is not fun to be on (when my stomach crashes, I cannot swallow anything, not even my own saliva, for months), and every time my stomach crashes, it takes longer and longer to recover to the point where I can eat again.
My blood sugar is fine with the help of chromium supplements. HGB A1C is normal (measure of long-term blood sugar stability).
However, I know I am deficient in fatty acids, because I cannot tolerate the TPN lipids (so my TPN is lipid-free). Unfortunately, I don't tolerate many fats well.
Vegetable oils and animal derived fats (except butter) seem to cause me varying degrees of distress (despite digestive enzymes), and I am not sure why this is the case (has always been so).
A poorly done acupuncture treatment seems to have triggered the start of the seizure-like episodes initially. Before that, I did have muscle tremors, but nothing like these current episodes.
Essential oils applied to the back of my neck & spine do help some, and for a while I thought I was clear from the seizure-like episodes. I guess I'm not. So I'm trying to discover if there are food triggers for seizures so I don't add more trouble than what I already have.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Razzle,
thanks for such a detailed explanation. I'm so sorry it's so difficult and complex. Geez, it just turned over 1 a.m. -- an emergency street crew was drilling in the road by my window for hours and just stopped so I'm heading to bed.
I wish I could help. Still, it could be the andrographis is just not for you. See how it goes without it. Although, you said elsewhere that you did well with several a day sometime before now.
Sweet dreams. This all has to get better. Just hold on. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Keebler,
Wow, that's late for them to be making such a racket...glad they finally stopped!
Thanks for the links (in your earlier post)...I read through and didn't find anything listed that I've been using/eating. Been trying to be really super careful with ingredients.
Anyway, yeah, I suppose it could be the Andrographis (yes, I took it for a while before without troubles, but that was long before the seizure-like episodes started)...will try to go without it and see if it helps any...
Thanks,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Because andrographis lowers blood sugar (and if blood sugar is too low, that can lower the seizure threshold) . . .
and being on TPN (IV food) for your main protein & many other nutrients . . .
perhaps it could be that it does not "hold" glucose as steady because it's more accessible and used up quicker? With whole food, because it takes hours to digest the blood sugar is held more steady over time with fats and proteins & complex carbs.
If you have a glucose meter, you might want to check from time to time to see if blood glucose is stable. Still, when you take anything that can lower blood sugar, best to take with the most substantial food you can manage so it will be best metabolized more slowly than just alone.
Just one thought as to why this seizure flare now.
In case you just got any new light bulbs, be aware that those with any degree of seizure disorder may do best to avoid all fluorescent bulbs. The old fashioned kind, incandescent may be best.
I do okay with a CREE LED bulb (warm but I forget the number on it) that I've recently tested out, though. As long as the LED is not in a lamp or socket that is on a dimmer switch. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there <<<<< Razzle >>>>>,
I am glad that you are asking about food and seizure activity. I wish I could add something helpful... but I will sure keep you in prayer.
I am searching for info' on how to treat a Myoclonus seizure like issue, and each time someone asks about seizures,it gives me a little more info' to check on.
At this time TxC'/hubby and I are on low carb dietary lifestyle. Mine is somewhat modified,due to health issues,and supplements. Recently I found that I could not eat celery anymore, not even in very small amounts.
Right now, I am not eating eggs, that seem to be causing a reaction [IBS type].
Prayers going up for your situation to be resolved soon,and for you to be able to find healthful,helpful foods you can eat.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
Prayers for you, Razzle. I hope you can figure out what helps.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Typing one-handed...sliced my thumb trying to fix dinner, & it is super painful...
Thanks for replies. Got dowser test and seems Burdock was interacting w/ Andrographis. Stopped the Andrographis for now.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Received an e-mail from Dr Mercola about Black Fermented Garlic being excellent for seizures. My local Whole Foods Carries it, maybe yours does also.
Hope you feel better.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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quote:Originally posted by glm1111: Received an e-mail from Dr Mercola about Black Fermented Garlic being excellent for seizures. My local Whole Foods Carries it, maybe yours does also.
Hope you feel better.
Gael
Did he say how much to take?
Not sure if I am having seizures. LLMD calls them subcortical because I dont have myoclonus during. I have had these "brain events" the past 2 nights triggered by sleep...
Posts: 97 | From Rockwall,TX | Registered: Apr 2014
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
The e-mail says...works wonders for seizures. Then when I opened it the first ad was for Fermented Black Garlic. Then went on to talk about the Ketogenic and Atkins diet for seizures. Not sure if he meant that the Garlic was used for seizures or not now that I re-read the e-mail.
Sorry for the confusion, but it's just not clear. However there seems to be many benefits of the fermented garlic. You can cook with it and eat it right out of the bulb as well.
Hope this makes sense.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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