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#61 of 873 Old 06-04-2010, 12:24 PM
 
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Originally Posted by gigismom View Post
ds started his new supps last night. per his new doctor... i gave him 1/2 capsule of Digest Gold followed 1/2 hour later by 1/2 capsule of viracin (this is an antibacterial... i think... to kill his bad gut bugs). He then ate a really big dinner. About 1-2 hours later he pooped and then again about another hour later. This is soooo not like him. He just pooped on Tues and lately he has been pooping every 3 to 4 days. Also, (tmi) the stool was very loose and STINKY. He did not have any cramping. What's up with that? To be expected after starting the new supps? Is this an indication that I gave him too much and should lower his dose? Is this a sign of die-off? I don't even know if this is a good or bad sign.... don't know what to think. I definitely want him to poop more frequenty so I was initially thrilled but then puzzled when it was so loose. What do you all think?
Normal. As long as he doesn't get any cramps or uncomfortable rashes, I'd go with it and see how he does. I wouldn't up the dose for at least a week though. We do low n slow here.

What to expect (from enzymestuff):

http://www.enzymestuff.com/discussionadjustments.htm

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#62 of 873 Old 06-04-2010, 12:26 PM
 
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Sorry, I always forget to multi-quote!

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Do you have a link? Didn't know she had a challenge going. I"ve been pretty good at drinking 16oz a day.
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#63 of 873 Old 06-04-2010, 12:56 PM
 
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I'd test you first. First off, you can assume a fair amount about their genetics based on yours, and a healthy mama is really important.

Searched Yasko for adenoids. She seems to link it mostly with strep - chronic strep in nasal passages AND gut (and the gut part leads to leaky gut). It's a bear to get rid of, but apparently nasal xylitol spray is great for getting it out of nasal passages, and then papaya enzyme & vitamin C (to bowel tolerance). Also, are you supping iron? She strongly recommends people do NOT take iron if dealing with chronic bacterial stuff, it makes the bacteria stronger. Instead she uses lactoferrin, which accomplishes the same thing for you without making the bacteria more virulent. Oh, and elderberry for immune support.

But, and this is a big guess, most of the kids with adenoid issues seem to have the tough MTRR mutations, meaning they need tons of B12. So you might try hydroxy B12 with him - that at least is an easy thing to get picky little guys to take!
Does her test test for the MTRR mutation? I don't know about the strep thing. We are seeing a craniopath & doing homeopathy & it did seem to make a difference (until this week) in that he could breath through his nose again. Now he's back to his old tricks again. Not sure what to make of it. There is very little chance of me getting enzymes into him. He is already getting like 3g of sodium ascorbate in his water. Do they talk at all about what happens to the kids when they have their adenoids removed? Does it help? Or does the strep go somewhere else? Sounds kind of like their screwed.

I almost supped iron but decided not to in the end. My ferritin level went up anyhow. I was surprised. I should do elderberry. Maybe for him as well if I can get him to take it.

I'm a bit discouraged today, after my appointment yesterday and Adam's reignited congestion.

Mom to DMI & Silly Apple
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#64 of 873 Old 06-04-2010, 12:57 PM
 
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My SIL was misdiagnosed with Lupus. Turned out she had lyme, and what's bad is that lupus is treated with steroids. Steroids make lyme worse. Now (12 years later) she's developed lupus. There goes my theory about gluten and autoimmune diseases. I was thinking they all developed because of gluten (I'm blaming it for everything).

Have they done coinfection tests on you - other tick-borne illnesses? it's possible you have one of the other ones, and not lyme, which is why it's coming back equivocal. My regular doctor today said that most of the diseases are related, symptom wise.

At least some things are looking good in your blood!
Thanks for the reminder about the lupus & steroids. I'd heard that before but had not remembered.

So if one hasn't yet developed an autoimmune disorder but is on the way, is there a way to interrupt that process?

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#65 of 873 Old 06-04-2010, 01:03 PM
 
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August is pretty full already (two weddings, my bday, DH's bday)! Planning parties makes me crazy. And last weekend when we were at the lake, my mother asked if we were planning anything for her 70th bday (this coming Sunday). oops. So we're celebrating the following weekend. Got to go get presents for my brothers to give her, and us. But that's next week.... I've got plenty of time...

Dang it!

1:45pm mammo then ultrasound. I don't know how much they'll tell me then. I'm hoping for confirmation that it's a cyst since the doctor said if it's fluid filled then it's a cyst, and cysts never become cancer.

Healing vibes


And the family grapevine is going... apparently word is out that I have lyme, so I'm getting "get well" and "thinking about you" emails when I'm no worse than I have been for the last 9 years!! It's kind of weird.
Well at least they care. I didn't even get a happy birthday from any family besides my mother (well and DH & the kids).

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#66 of 873 Old 06-04-2010, 01:05 PM
 
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Sorry, I always forget to multi-quote!



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#67 of 873 Old 06-04-2010, 01:39 PM
 
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hi everyone, happy june! just popping in before work so i did not have time to read up to this point yet. just need your thoughts on something

ds started his new supps last night. per his new doctor... i gave him 1/2 capsule of Digest Gold followed 1/2 hour later by 1/2 capsule of viracin (this is an antibacterial... i think... to kill his bad gut bugs). He then ate a really big dinner. About 1-2 hours later he pooped and then again about another hour later. This is soooo not like him. He just pooped on Tues and lately he has been pooping every 3 to 4 days. Also, (tmi) the stool was very loose and STINKY. He did not have any cramping. What's up with that? To be expected after starting the new supps? Is this an indication that I gave him too much and should lower his dose? Is this a sign of die-off? I don't even know if this is a good or bad sign.... don't know what to think. I definitely want him to poop more frequenty so I was initially thrilled but then puzzled when it was so loose. What do you all think?
That is a LOT of digest gold and viracin to start off with. You'll definitely see plenty of die off with that, if he has gut issues. Lots of loose stinky poop is definitely die off. Watch his behavior - you'll know you pushed too fast if he starts to feel really bad. In our house, we often see a little lethargy/feeling bad, a little wildness, a little low grade fever, a little sleep disruption. If any of those things get too bad, back off on the doseage, and/or try some activated charcoal and/or clay and vitamin C to mop up the toxins.

And while you are doing this, it is critically important he poop at least daily (or else the toxins will get reabsorbed as they sit waiting to get pooped out). Sounds like that isn't an issue right now, so that's great!

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1:45pm mammo then ultrasound. I don't know how much they'll tell me then. I'm hoping for confirmation that it's a cyst since the doctor said if it's fluid filled then it's a cyst, and cysts never become cancer.
Sending good thoughts your way, Kathy!

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Does her test test for the MTRR mutation? I don't know about the strep thing. We are seeing a craniopath & doing homeopathy & it did seem to make a difference (until this week) in that he could breath through his nose again. Now he's back to his old tricks again. Not sure what to make of it. There is very little chance of me getting enzymes into him. He is already getting like 3g of sodium ascorbate in his water. Do they talk at all about what happens to the kids when they have their adenoids removed? Does it help? Or does the strep go somewhere else? Sounds kind of like their screwed.

I almost supped iron but decided not to in the end. My ferritin level went up anyhow. I was surprised. I should do elderberry. Maybe for him as well if I can get him to take it.

I'm a bit discouraged today, after my appointment yesterday and Adam's reignited congestion.
. Hugs, hang in there. Yes, the Yasko test looks for MTRR mutations, 4 or 5 different ones. In general, removing adenoids seems to deal with the immediate issue, but not the cause, so the cause (strep or poor methylation or messed up immune response, or whatever) moves elsewhere and continues to cause issues. There still may be plenty of acute reason to remove them, but it doesn't sound like it usually addresses long term issues.

I'd personally consider trying some hydroxy B12 with him, and see what happens (it's easy to give, either drops or sublinguals - I just crushed those into powder and wiped in DS' cheek for max absorption, but they taste good). I know you struggle to get him to take things, and if he has some of the tougher MTRR mutations, that might be the thing that would make the biggest difference to his methylation. (Make sure he's taking about 200mg of folate as well, but that powder is tasteless, so guessing you could sneak it in somewhere).

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So if one hasn't yet developed an autoimmune disorder but is on the way, is there a way to interrupt that process?
That's why I was thinking you might want to do the genetics test for you first. The faster you can deal with any urgent genetics (like B12 with the MTRR mutations), the more chance you can interrupt whatever's coming at you. People use her protocol quite a bit with chronic fatigue, fibromyalgia, etc - but they are debilitated enough it's often hard to move very fast.

With her program, there are "step 1" supports you can put in place before you get your genetics (you probably have some already). And if I were you I'd put the basic methylation supports she calls for in place as well, slowly, so you don't cause lots of detox/reaction for your nursling.

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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#68 of 873 Old 06-04-2010, 01:40 PM
 
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Thanks for the reminder about the lupus & steroids. I'd heard that before but had not remembered.

So if one hasn't yet developed an autoimmune disorder but is on the way, is there a way to interrupt that process?
I don't know. Do they even know what triggers autoimmune disorders? Are all autoimmune disorders inflammatory in some way? Is that a key? There's got to be something that starts the cascade.

One good thing...when I was putting away stuff downstairs, I saw the hot fudge sauce that I'd found (safe - pineapple juice, pear juice, cocoa, vanilla) last time I went to a hfs, so now I don't have to make my own tonight! I'm making Jacqueline's 4 bean salad tonight so it has time to marinate too. Yum, I can't wait.

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#69 of 873 Old 06-04-2010, 02:26 PM
 
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tired
kids are "fighting" over milk... ds2 "shared" his side with ds3 and ds3 didn't want to give it back. they were both giggling while ds3 was nursing (apparently it's funny for ds3 to nurse on ds2's side? I was laughing at them anyway.).

just jumped on to say thinking of you, Kathy
interesting about the get well cards and stuff. my parents used to call my grandma (dad's mom) a hypochondriac bc she never really felt well. She had Hashimoto's (though they just said 'hypothyroidism'). Of course she never felt well! It kind of concerns me that my family probably views me as being a "hypochondriac" as well.

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#70 of 873 Old 06-04-2010, 02:37 PM
 
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Originally Posted by mamafish9 View Post
That is a LOT of digest gold and viracin to start off with. You'll definitely see plenty of die off with that, if he has gut issues. Lots of loose stinky poop is definitely die off. Watch his behavior - you'll know you pushed too fast if he starts to feel really bad. In our house, we often see a little lethargy/feeling bad, a little wildness, a little low grade fever, a little sleep disruption. If any of those things get too bad, back off on the doseage, and/or try some activated charcoal and/or clay and vitamin C to mop up the toxins.

And while you are doing this, it is critically important he poop at least daily (or else the toxins will get reabsorbed as they sit waiting to get pooped out). Sounds like that isn't an issue right now, so that's great!



Sending good thoughts your way, Kathy!



. Hugs, hang in there. Yes, the Yasko test looks for MTRR mutations, 4 or 5 different ones. In general, removing adenoids seems to deal with the immediate issue, but not the cause, so the cause (strep or poor methylation or messed up immune response, or whatever) moves elsewhere and continues to cause issues. There still may be plenty of acute reason to remove them, but it doesn't sound like it usually addresses long term issues.

I'd personally consider trying some hydroxy B12 with him, and see what happens (it's easy to give, either drops or sublinguals - I just crushed those into powder and wiped in DS' cheek for max absorption, but they taste good). I know you struggle to get him to take things, and if he has some of the tougher MTRR mutations, that might be the thing that would make the biggest difference to his methylation. (Make sure he's taking about 200mg of folate as well, but that powder is tasteless, so guessing you could sneak it in somewhere).



That's why I was thinking you might want to do the genetics test for you first. The faster you can deal with any urgent genetics (like B12 with the MTRR mutations), the more chance you can interrupt whatever's coming at you. People use her protocol quite a bit with chronic fatigue, fibromyalgia, etc - but they are debilitated enough it's often hard to move very fast.

This makes total sense to me. It's just when I start to think about me, I think about the kids and realize they need help too. But I guess I have to start somewhere.


With her program, there are "step 1" supports you can put in place before you get your genetics (you probably have some already). And if I were you I'd put the basic methylation supports she calls for in place as well, slowly, so you don't cause lots of detox/reaction for your nursling.
What are the basic methylation supports? Just curious if I'm already taking some.

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#71 of 873 Old 06-04-2010, 04:18 PM
 
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Oh yeah. One more minor (?) annoyance.
The app I use on my iPod for organizing myself got erased somehow (I'm guessing the somehow starts with R and ends with aphael, but that's my best guess. ). So, the last month or so of putting data (chore list/schedule, Master grocery list, household shopping list, clothes shopping list, pantry inventory, wish lists for people, etc etc) into my iPod? Yep. Gone. *sigh*

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#72 of 873 Old 06-04-2010, 04:30 PM
 
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Oh yeah. One more minor (?) annoyance.
The app I use on my iPod for organizing myself got erased somehow (I'm guessing the somehow starts with R and ends with aphael, but that's my best guess. ). So, the last month or so of putting data (chore list/schedule, Master grocery list, household shopping list, clothes shopping list, pantry inventory, wish lists for people, etc etc) into my iPod? Yep. Gone. *sigh*
Maybe this is an opportunity to get the other app that really has all that you want? The one that you found after you bought this one? (looking on the bright side, since here it's not so bright--tired and feeling like ugh, it's Friday, no cleaning at all, just blah... and DH is going out of town for half of next week, and it's getting warm again... blah blah blah, whine whine whine... )

Chlobo--I *think* the list of supps you asked about is the latest addition to mamafish's Yasko thread?
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#73 of 873 Old 06-04-2010, 04:54 PM - Thread Starter
 
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If going off the foods made the symptoms go away, why would lyme abx bring them back? Is it a food intolerance or something else? I just don't get it.
Antibx creating leaky gut?

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Originally Posted by mamafish9 View Post
Searched Yasko for adenoids. She seems to link it mostly with strep - chronic strep in nasal passages AND gut (and the gut part leads to leaky gut). It's a bear to get rid of, but apparently nasal xylitol spray is great for getting it out of nasal passages, and then papaya enzyme & vitamin C (to bowel tolerance). Also, are you supping iron? She strongly recommends people do NOT take iron if dealing with chronic bacterial stuff, it makes the bacteria stronger. Instead she uses lactoferrin, which accomplishes the same thing for you without making the bacteria more virulent. Oh, and elderberry for immune support.

But, and this is a big guess, most of the kids with adenoid issues seem to have the tough MTRR mutations, meaning they need tons of B12. So you might try hydroxy B12 with him - that at least is an easy thing to get picky little guys to take!
Hmmm, that would correlate with my DS too, he has had strep before. And he tends to have a quick temper, comes and goes very fast Gemini that he is, so I've always assumed he needs B12.

What's the hydroxy B12 stuff you use? I need to give folate with this?

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So, on my new favorite topic, pancreatic supports... . DS was the child who woke up in the middle of the night and was up for 4 hours, several times a week. It got better over the last year, but still happened 1-2x a week. And he woke frequently to nurse, without that, I can't imagine how often he would have been awake at night.

Since starting all the Yasko stuff, this has entirely disappeared, and I think it's primarily the pancreatic supports - he's not having blood sugar crashes in the middle of the night any more. I also make sure he goes to bed with a full belly, but that didn't really fix things before, it only moved his wake up time from midnight to 2am .
This is very interesting, I'm thinking it's making him less insulin resistant by supporting the pancreas? Except that I thought the problem would be further down the chain... confusing... but you can't argue with success, you must be soooooo happy this is better, yikes.

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If you posted it here before I missed it. I have insomnia where I can't fall asleep, and if I wake up in the night, it takes me an hour or so to get back to sleep. So maybe I should have a protein (like a hard boiled egg) before bed? or should it be a fat?
Yes I would try some protein, fat is fine too: nuts, seeds or meat. Or you might need to lower your carbs at dinner, the "can't fall asleep at night" could be a sugar crash followed by adrenaline surge interfering with melatonin release.

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I'm remembering I had a bad reaction to Metafolin, what does that mean, I should go slower?
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#75 of 873 Old 06-04-2010, 05:07 PM
 
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What type of bad reaction? Could you have been quite low on B12 and that depleted it further? Wait... is metfolin a form of folate, or a drug for blood sugar issues? The latter is metformin, right? If it's folate, is it just folate, or something else as well?
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#76 of 873 Old 06-04-2010, 05:22 PM
 
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What are the basic methylation supports? Just curious if I'm already taking some.
Some mthf folate (like 200mcg or so), some folinic (again, about 200mcg), intrinsic factor (to help transport B12, Yasko has a supp on her site that has intrinsic factor & folate, take 1/4 tab a day), and then B12 - without genetics, do hydroxy B12, 3-5mg a day at least (more if that seems helpful). She doesn't tend to use a lot of folate, even if you have mthfr mutations, because excess folate can be converted to glutamate (excitatory and inflammatory and a big problem for ASD kids and people with autoimmune disorders). If you have mthfr too, she has other supports - NADH, BH4, liver supports, can't remember what else.

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Hmmm, that would correlate with my DS too, he has had strep before. And he tends to have a quick temper, comes and goes very fast Gemini that he is, so I've always assumed he needs B12.

What's the hydroxy B12 stuff you use? I need to give folate with this?

This is very interesting, I'm thinking it's making him less insulin resistant by supporting the pancreas? Except that I thought the problem would be further down the chain... confusing... but you can't argue with success, you must be soooooo happy this is better, yikes.
To be honest, I'm backing my way into understanding. I tried it, it worked wonders, now I'm figuring out all the reasons why. And with Shannon seeing benefits too, it seemed like some other people might fall into this same category, hence the sudden experiment we seem to have launched here .

For the hydroxy B12, you saw the link in the other thread. And as I just said up-post, about 200mg each of folate & folinic at most (I used the mega food B complex 1/3 a day for DS, and a little extra mthf folate, and that seems to work fine).

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I don't know. Do they even know what triggers autoimmune disorders? Are all autoimmune disorders inflammatory in some way? Is that a key? There's got to be something that starts the cascade.
I wish they knew what exactly caused immune disorders(hashis here) that sure would make life a lot easier. I guess it could be metal toxicity, viral, etc there's some ideas but it's hard to pinpoint. Oh our lovely toxic world

The strep thing really sticks out for me too. Although I haven't had it since first year in college so about 7 years ago. I had it many times growing up. 5 times in high school alone. Fun times
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#78 of 873 Old 06-04-2010, 06:00 PM
 
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What's her name so I can look her up?
http://www.facebook.com/#!/pages/Hea...f/346377049242

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#79 of 873 Old 06-04-2010, 06:17 PM
 
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Some mthf folate (like 200mg or so), some folinic (again, about 200mg), intrinsic factor (to help transport B12, Yasko has a supp on her site that has intrinsic factor & folate, take 1/4 tab a day), and then B12 - without genetics, do hydroxy B12, 3-5mg a day at least (more if that seems helpful). She doesn't tend to use a lot of folate, even if you have mthfr mutations, because excess folate can be converted to glutamate (excitatory and inflammatory and a big problem for ASD kids and people with autoimmune disorders). If you have mthfr too, she has other supports - NADH, BH4, liver supports, can't remember what else.

For the hydroxy B12, you saw the link in the other thread. And as I just said up-post, about 200mg each of folate & folinic at most (I used the mega food B12 complex 1/3 a day for DS, and a little extra mthf folate, and that seems to work fine).
Mega Foods is a brand, right? Is it the MegaFood Balanced B Complex. We have that one. Otherwise,

So this is what I have on hand:

Perque Activated B-12 guard 2,000 mcg sublingual hydroxoccobalamin
Thorne Folocal (folate as calcium folinate) 800 mcg
Thorne 5-MTHF 1,000mcg

So are these the right forms? Or is there a Hydroxy & a hydroxo? And when you say 200mg I would need to take 3 of the thorne folocal & 2 of the 5-MTHF?


Now, about the strep thing. DS has never had strep that I know of. Do most of these kids have recurrent strep infections? I realize he could still have it but I'm just curious.

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#80 of 873 Old 06-04-2010, 06:20 PM - Thread Starter
 
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What type of bad reaction? Could you have been quite low on B12 and that depleted it further? Wait... is metfolin a form of folate, or a drug for blood sugar issues? The latter is metformin, right? If it's folate, is it just folate, or something else as well?
Solgar Metafolin form of methylfolate. I've only ever taken methyl B12 and it seemed to help but maybe only helping a small amount? I want to just try hydroxy myself first too.

So per the very well timed quote below from Mamafish, the "excitatory" reaction was my response to Metafolin! Made me jittery.

Speaking of adrenal issues in other thread, I don't want to do derail it... my DS almost certainly has them given his poor sleep issues for the first 3 years of life, and my issues. I'm sick to my stomach right now b/c he is starting his fourth hour of video games today (school day) and it will probably continue until bedtime. And tomorrow for most of the day (Fri & Sat Papa Days). This has got to be murder on his adrenals (staying in one place, stressed and yelling).

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Some mthf folate (like 200mg or so), some folinic (again, about 200mg), intrinsic factor (to help transport B12, Yasko has a supp on her site that has intrinsic factor & folate, take 1/4 tab a day), and then B12 - without genetics, do hydroxy B12, 3-5mg a day at least (more if that seems helpful). She doesn't tend to use a lot of folate, even if you have mthfr mutations, because excess folate can be converted to glutamate (excitatory and inflammatory and a big problem for ASD kids and people with autoimmune disorders). If you have mthfr too, she has other supports - NADH, BH4, liver supports, can't remember what else.

To be honest, I'm backing my way into understanding. I tried it, it worked wonders, now I'm figuring out all the reasons why. And with Shannon seeing benefits too, it seemed like some other people might fall into this same category, hence the sudden experiment we seem to have launched here .

For the hydroxy B12, you saw the link in the other thread. And as I just said up-post, about 200mg each of folate & folinic at most (I used the mega food B12 complex 1/3 a day for DS, and a little extra mthf folate, and that seems to work fine).
DS can't do that hydroxy formula b/c of the rosemary, will probably get one from Emerson Ecologics (I get half price thru my RD friend). If I get a new supplement "approved" by her. She is great, it's just the ua violation "family circumstance"... our appts are now attended by both me and STBX and its a major pia and honestly waste of time on just the basics which are still not followed after a year of appts. Sigh. See why I just post cryptic messages, once I get started ... !!

I should probably just try again for B6 b/c the salicylate issue still isn't being resolved. Wish me luck on Thurs. for our appt. Four years ago our DAN/AAEM dr. that we first did allergy testing with was going to test DS for MTHRF and the uav nixed it. To think I could have known then.
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#81 of 873 Old 06-04-2010, 08:14 PM
 
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Mega Foods is a brand, right? Is it the MegaFood Balanced B Complex. We have that one. Otherwise,

So this is what I have on hand:

Perque Activated B-12 guard 2,000 mcg sublingual hydroxoccobalamin
Thorne Folocal (folate as calcium folinate) 800 mcg
Thorne 5-MTHF 1,000mcg

So are these the right forms? Or is there a Hydroxy & a hydroxo? And when you say 200mg I would need to take 3 of the thorne folocal & 2 of the 5-MTHF?


Now, about the strep thing. DS has never had strep that I know of. Do most of these kids have recurrent strep infections? I realize he could still have it but I'm just curious.
ACK!!!! My bad - 200mcg, not mg. I'll go fix upthread. So, do like 1/4 of each of the thorne ones a day. So sorry. And the Perque is perfect, it's one of the ones Dr. Yasko uses as well (I think hydroxo and hydroxy are technically used one for sublingual, one for shots, or some dumb thing - same stuff). And yes, Megafood B is what I use for DS, but like 1/6 a day. Like I said, Yasko believes in small doses of folate, but the correct forms, and then lots of B12. (Take the perque, spread them out over the day).

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It's 90F here so I have to run both ovens at 450 for pizza tonight. hee hee.

got mammo and u/s. Said she'd give it to the radiologist and my doctor should call me with results Monday or Tuesday. So more waiting.... neither tech would tell me anything. Went to 6 stores today. Hope I got everything for the party... then I realized that we only have 2 chairs for outdoor seating... oops. I guess I'll send DH out in the morning.

I still haven't started cooking or cleaning for tomorrow. I thought I was going to make biscotti or cookies to go with the ice cream sundaes, but I don't know if that's going to happen or not. And I don't really have an appetizer that DS can have (and it is HIS party). I have potato chips (G and I can have them) and chips & salsa (for "the others"). I have rice crackers... can anyone think of something to dip? I did layered taco dip at the last party... it's a lot of work and I think my ovens are going to be full.

Gotta go soak my beans for the baked beans. And put the pizzas in the oven for (very late) dinner. I'm trying another new crust recipe.

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kathy, take notes on the crust recipe, please! I have been dying for pizza and the amy's stuff is just so expensive and every crust I' ve tried I haven't liked. (Course, I could ruin it like I ruined your bread...)

We went to a friends to swim today. So fun. Kids had a blast. My 3 yr old swam the width of the shallow end (floaties) back and forth over and over the entire time. She was so cute. And excited. And it worries me because mil just put her above ground pool up, filled it, and has no fence. I thought she was going to fence the thing first! DD is a climber, so even without the ladder, she could shimmy up the poles on the sides. She does that on the bunk bed already. I don't think I'll be leaving my kids there til there's a fence...and our garden is there... Who puts up a pool without a fence??? She said she wasn't going to fill it til she had fencing...

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Thanks for the reminder about the lupus & steroids. I'd heard that before but had not remembered.

So if one hasn't yet developed an autoimmune disorder but is on the way, is there a way to interrupt that process?
I think it's entirely possible, I just don't know how...I totally think that lifestyle, diet both play a part. Take dd for instance...I truly believe had she gone on eating gluten her entire life without addressing all these things, that she would someday end up with thyroid or diabetes issues. I feel like her chances for that are much slimmer now...(those are two autoimmune issues that run rampant in my family--high blood pressure and heart issues are DH's side, as well as asthma, allergies and autism...). I know environmental issues stack the deck these days, but these other things certainly help. And I am totally wanting dr yasko's tests for myself, dh and her. I think that would give a us an interesting picture into our family... (just have to afford them)

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OK, tiptoeing into land I didn't want to go in to. I think we need to test DD for food intolerances and celiac. She's 6yo and 35lbs, and after three weeks of whooping cough, she looks like a cadaver . Happened with flu earlier this year too. She's skinny enough it's a health issue. She doesn't eat enough. But before we force feed her, we need to rule out physiological stuff. Food intolerances & celiac seem like the obvious two to check first.

So - ideally I want an ELISA test that is from a good lab, doesn't need a doc to order (I can probably get our family doc to order, but it'd be easier if I didn't have to do that), and finger prick, not blood draw. I found US Biotek, and a site I can order their 96 panel IgG fingerprick test from that doesn't require a doc (I think they have one onsite that signs the orders). Any reasons that is a bad idea? Also, if you are celiac, would you necessarily be IgG to gluten? DD doesn't really have any other indicators (normal poop, etc), but I figured it was smart to rule out.

Ugh. I don't want to go here.

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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I know there's a blood test for celiacs...so they are looking for certain somethings in the blood...we did enterolabs. DD did not have the celiac genetics, but all celiac symptoms and IgG to gluten. I know many are working to broaden the "diagnosis" to add people like dd. I don't know why the US is so far behind in this area. I think it's wise to rule it out. And keep in mind she can be Non Celiac Gluten Intolerant/Sensitive. (Which is becoming a label in itself.)

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Deb celiac wouldn't show up on an IgG panel, sorry. And as you know, gluten could still be causing a bunch of issues even without celiac. Maybe a GF trial over the summer when there's no school to confuse things?

Has anyone mentioned vit D for autoimmune stuff yet?

Not around much - still trying to juggle dd and ds, but now I have energy and motivation, too. Did laundry, unloaded the dishwasher, scrubbed the floor (it was sticky), reorganized a couple cabinets, and got dd set up with water play. Not much compared to a few of you who will remain nameless, but HUGE for over here

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Found this article on celiac and blood tests. It sounds like a combo of IgG and IgA antibodies (if you are positive for both) is a pretty accurate test for celiac? I don't need definitive, and I know she could be just IgG for gluten. Hoping neither is the issue, and she's just in the pancreatic supports camp with DH and DS, but...

Shannon, I'm thinking to go the test route this time, because a food trial with DD is going to be, um, difficult. And if it is a food intolerance, it's got to be something like dairy or gluten she gets every day (or several somethings, but including one of those). This is my kid that doesn't eat meat, so pulling dairy is going to take out a lot of her protein sources. Gluten would be easier nutrition wise, but a huge stress on her in terms of changing her diet (she's my sensitive child who doesn't handle change well). So while I know the tests are never 100% accurate, it seemed like the place to start.

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Originally Posted by mamafish9 View Post
Found this article on celiac and blood tests. It sounds like a combo of IgG and IgA antibodies (if you are positive for both) is a pretty accurate test for celiac? I don't need definitive, and I know she could be just IgG for gluten. Hoping neither is the issue, and she's just in the pancreatic supports camp with DH and DS, but...

Shannon, I'm thinking to go the test route this time, because a food trial with DD is going to be, um, difficult. And if it is a food intolerance, it's got to be something like dairy or gluten she gets every day (or several somethings, but including one of those). This is my kid that doesn't eat meat, so pulling dairy is going to take out a lot of her protein sources. Gluten would be easier nutrition wise, but a huge stress on her in terms of changing her diet (she's my sensitive child who doesn't handle change well). So while I know the tests are never 100% accurate, it seemed like the place to start.
Certain levels of one of the antibodies is supposed to be diagnostic, but I forget which one. Ttg?

I'm assuming you've played with supps like zinc and mag and stuff? Watching dd and myself, I swear, a bunch of the sensitive kid stuff ties in to the nutritional stuff as well...

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OK, tiptoeing into land I didn't want to go in to. I think we need to test DD for food intolerances and celiac. She's 6yo and 35lbs, and after three weeks of whooping cough, she looks like a cadaver . Happened with flu earlier this year too. She's skinny enough it's a health issue. She doesn't eat enough. But before we force feed her, we need to rule out physiological stuff. Food intolerances & celiac seem like the obvious two to check first.

So - ideally I want an ELISA test that is from a good lab, doesn't need a doc to order (I can probably get our family doc to order, but it'd be easier if I didn't have to do that), and finger prick, not blood draw. I found US Biotek, and a site I can order their 96 panel IgG fingerprick test from that doesn't require a doc (I think they have one onsite that signs the orders). Any reasons that is a bad idea? Also, if you are celiac, would you necessarily be IgG to gluten? DD doesn't really have any other indicators (normal poop, etc), but I figured it was smart to rule out.

Ugh. I don't want to go here.
Wasn't there a stool test for celiac or gluten intolerance from some lab?
I didn't think celiac showed up on a IgG screen either. It's autoimmune, but is it just antibodies that the tests are showing?

Does she not eat meat because she's a vegetarian? Or not eat meat because she doesn't like it? Or... just curious. ALCAT doesn't require a doctor either... (I'm biased because I haven't taken the other ones, and ALCAT was good for us).

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#90 of 873 Old 06-04-2010, 10:07 PM
 
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Certain levels of one of the antibodies is supposed to be diagnostic, but I forget which one. Ttg?

I'm assuming you've played with supps like zinc and mag and stuff? Watching dd and myself, I swear, a bunch of the sensitive kid stuff ties in to the nutritional stuff as well...
It sounds like IgG + IgA both positive is about 95% predictive of celiac (which would be plenty close enough for me).

She's fine on supps, and we hair tested, she's not zinc or mag deficient. I've never really impacted her much with supps, she's like me, doesn't seem that affected. She's just tiny, and I'm not convinced it's normal. I think with how thin she is after whooping cough, it's just a lot more disturbing than normal, and I'm taking it as motivation to go rule out a few things.

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Wasn't there a stool test for celiac or gluten intolerance from some lab?
I didn't think celiac showed up on a IgG screen either. It's autoimmune, but is it just antibodies that the tests are showing?

Does she not eat meat because she's a vegetarian? Or not eat meat because she doesn't like it? Or... just curious. ALCAT doesn't require a doctor either... (I'm biased because I haven't taken the other ones, and ALCAT was good for us).
Enterolabs will stool test and gene test, but I figured I'd start with a wider food intolerance panel - I have no reason to believe gluten is a more likely culprit than dairy, for example.

She's never liked meat. I always assumed it was texture related. I don't eat a lot of meat, it makes me feel full and blecky. But she'll eat bacon, meatballs, and calamari no problem. And happily eat beans, dairy, eggs.

I just figured out I can order the US Biotek panel through Directlabs, so no doc needed, and with the autism-mercury discount, it will only cost about $175. The ALCAT looks great, it's just really expensive, and it requires a blood test (which honestly scares me more than the cost!). I have a sister who passes out and goes into shock (and takes about 48 hours to recover) every time they draw her blood - and DD is sooooooo like her. They can have all of my blood they want, but DH, DD, or DS, it would be a MAJOR calamity. So trying to start easy here .

From what I've read here, it seems like the ELISA stuff people do can often be false negative/positive on things like corn, or more exotic fruits, stuff like that - does anyone have a story of the ELISA being wrong on gluten or dairy?

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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