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I'm sorry to be filling up the board with questions today, but do you think it's possible that the garlic that I have been giving my girl is drawing things out/stirring things up? I posted earlier about her rage this am which has now lasted for 5 hours and been the worst one that she has ever had. And it is just dawning on me about the garlic. Hmmm. What do you think?

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How much are you giving and how often?

We use 1000mg odorless garlic - one capsule/day at dinner. The first week, both kids got sillier and impulsive, a little quick to anger. Then it resolved and we've had no symptoms of yeast infection in a year since starting it.

 

Are you giving probiotics? When did you start the zith? Do you see any pattern to the rages (e.g. lyme has a life cycle of 3-4 weeks, so some parents see an increase in symptoms one week a month). Do you now her MTHFR status?

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I use garlic with my daughter also and I have a daughter who will use any excuse to rage. I did not see any increase in raging with the garlic. I will say however, that when we use diflucan for yeast that she always has a bad day the next day. Quick temper and more tendency for raging. So I do think that yeast die off can cause those type of symptoms but I'm not sure that garlic gives such a bad die off. Some children are more sensitive than others though so I guess you never know but my guess is it's a coincidence. Sure hope things improve for you.

 

Dedee

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I am giving 500 mg high allocin garlic. Yes, I am alternating several probiotics including narrow and pb8. I do not see any pattern--today was the worst rage ever, an we've had some doozies. She does have the homogeneous mthfr gene defect. I am giving her methylfolate but have not yet found methylated b12--I am checking that out.

 

I am going to check out The lemon balm that someone mentioned earlier.

 

Thank you both for your input. You have no idea how much it helps to know that somebody who is also living through this is thinking about it, too. :)

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If she's homozygous, methylation could be a big part of the bipolar. Try some niacin - one dose. Open a capsule (I can only find them in 500mg capsules). So I open one up and sprinkle 1/10 of it onto an oreo or applesauce or yogurt...

 

Then maybe stop giving her methylfolate until you get some methylB12 (can get it on amazon or local health food store or a GNC or a Vitamin Shoppe). When you do re-start methylfolate + methylB12, start low dose - like 60-100mcg. Often when you re-start a system that hasn't been working well, you stir lots of stuff up. Starting low helps reduce the turmoil.

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Hahhahaha...I just read my last post and saw all kinds of typos and out and out incorrect terminology! Ooops!

 

I got the methylb12 and niacin (and lemon balm)! I'm hopeful that tomorrow will be better!

Tomorrow will be better :) I think you deserve a nice glass of wine tonight

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From personal experience, I'd consider trying either the lemon balm (have no experience with that) or the change in methylfolate/methylB12 dosing but not both today. Change one thing at a time or you won't know what caused what.

 

If you opt to put the lemon balm aside and go the methylation route, I'll just tell my story as something to go by. When my DD was flipping out b/c I'd been giving too much methylfolate and no methylB12, here's what I did to "fix" it:

 

Day one - gave 50 mg niacinamide (1/10 of an opened capsule) and hid it in some food. This helped calm her w/in the hour and it gave me a little confidence I was on to something. I did not give any methylfolate or methylB12 that day.

 

Days 2-6 - no methylfolate, no methylB12, no niacin. Kept all other meds/supplements the same. Avoided fortified cereals, multi-vitamins or anything that might have regular folate in it. During this time, her mood drastically improved and she became steady and happier.

 

Day 7 - her mood started to get a little up and down. I saw small signs "it" (bi-polar) was coming back. So I re-started methylfolate - one drop of yasko's methylmate B, which is 67mcg of methylfolate. Plus 1000 mcg tablet of methylB12 - dissolved both into a 5ml medicine cup with water. Had her drink it. This significantly reduces the absorbability of the methylB12, as I did not have her keep it under her tongue. So for anyone thinking "holy cow, that's a lot of B12 compared to methylfolate," I think much less methylB12 is actually getting into her system with this delivery method. (for reference, DD is 8, 53lbs)

 

Day 8 - no methyl supps

 

Day 9 - same as Day 7

 

We stayed at this every other day dosing and have stayed at this for 6 months, from August until now. Usually, January is an awful month. For the past 4 yrs, she has dissolved into a puddle of irrational, emotional mess. One January, her CamK tested 179 without any obvious signs of infection (tho she may have had lyme - we treated for it but never had any slam dunk labs to confirm, just a C3d in the 90s - 9 times higher than normal). This January, she was stable the entire month, only pulsing zith every other day (more to protect DS than her and also to not test fate). So everything points to proper methylation as being her answer.

 

I'm not saying this is your DDs answer or her only answer. You have possible lyme and strep that still need to be addressed. I only put this out there as a reference for what we did when we were trying to isolate the role that methylation/MTHFR played in our story. So if/when you decide to test this theory, only change one variable - and that's the dosing of the methylfolate/methylB12. Leave the lemon balm for later if needed, or do only the lemon balm and not the B vitamins. Just not both today.

 

The niacin is used only as a mop to help clean up the excess amount of unused methylfolate you may have been giving. It isn't used as part of a daily therapy. Too much niacinamide is not good for those with MTHFR (tho everyone needs some niacinamide). Because your DD is homozygous (mine is hetero), she may need more than my DD in terms of dosing. But I'd suggest using one drop every other day for a week, maybe two and only then consider doing one drop every day for 2-3 weeks, then increasing again if needed. If you tip the cart too far the other way and you see bad stuff again, break out one dose of niacinamide as an "antedote". Good luck!

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Thank you for such detailed help. I really need that right now and know that i am looking for something--anything right now to fix it. Your advice is very wise to do one thing at a time--while I have known that, thanks for reminding me because I have been so desperate that my philosophy has sort of been to try everything that might work and sort it out later. This is the worst she has ever been. When I woke her up this am after she slept 17-18 hours (we had to give her a zyprexa that our psych gave us for emergencies), she was still very much in the same place as yesterday--irritable, wanting people to die and asking why I could 't make them die. We finally let her lay back down after giving her 2 Advil which did zero. She has been asleep again for a couple of hours--don't really know what to make of this, but we are letting her sleep as long as she can.

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  • 1 year later...

I know this is an old topic, and I hope she is doing much better by now. But I wanted to say that we had an absolutely horrible experience with garlic that I believe set off our last PANS episode. My daughter had food poisoning and H pylori, terrible gastritis. I was desperate to help her so I suggested she eat a little garlic. Bad idea! She ate at least six pickled cloves over two days. She loves them, so she was eating them and I didn't know it. Oh my god, the night of the second day of her eating garlic, she exploded with OCD like we had never seen before. Ordering, jumping, counting to the extreme, which she had none of before. She slept in the bath tub for days, couldn't use the bathroom, wouldn't sleep in her bed, went into rages. It was . It had to be that the garlic opened the barrier and wow, it happened fast. And she had the worst hives, big welts all over her body. That was eight months ago, and she is just now starting to get better. I wouldn't have believed garlic could have that kind of effect, but it had to be.

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This is the first time i've read about garlic helping with rage. DD is struggling now but has a tooth infection. She is not on antibiotics yet wenoticed sugar is starting to bea catlysist so wearecutting it ,out of her diet again. I dont know ?, how to check if yeast is a problem.

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