High dose ALA having good effect

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fiveyearswasted
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High dose ALA having good effect

Postby fiveyearswasted » Mon Mar 03, 2014 11:26 pm

Just sharing.....

We've been giving my son a high dose of ALA recently with good results. One 600mg cap in the morning and one 600mg cap at night. Total 1200mg daily. We did this for 3 weeks then tested.

Testing:
Ammonia cut in half. Previously it was 111. Normal scale is 30 to 86. This time it was down to 56.
Copper is down. Previously it was 136. Scale is 68 to 128. This time it was 117.
ASO is down. Last time 153. Scale limit is 239. This time it was 136. (Starting was 398 2 years ago.)
IgE. Previously was 543. This last time was 346. Scale limit is 173 so still significantly high but this was a large drop in this short period of time. Two years ago it was 661.
Homocysteine. Previously it was below range, 2.8, on a normal scale of 3.7 to 13.5. This time it was 5.9.

Other possibly related items:
Vit A was good. 118 on a scale of 97 to 316.
Vit B1 was good. 61 on a scale of 24 to 66.
Vit D was the same at 58. (We've been giving a lot of D3.)
IgG was at 795. Range is 870 to 1700. He's always been a tad low in this.
AST was slightly lower. Previously 37 was down to 30. Range < 35.
ALT was slightly lower. Previously 31 was down to 20. Range <35 (Nice to know that ALA seems to be helping liver function a bit.)
Lithium. This was our first time testing this marker and it was rock bottom low. 0.01 on a scale of 0.60 to 1.20. We do take lithium orotate 20mg once every 1 to 2 weeks so I was surprised to see it this low.

Observations:
Speaking is improved. Speaking clarity and speaking engagement is notably better. Not an extreme improvement but noticeable.
Sleeping is better. This was one of the first observations was that he was sleeping through the night and waking up at ~7:00am. Before, it was rare that he would get a full 8-9 hrs of sleep. Also he tends to stim which for him is scripting immediately upon waking. The last 2 days he has woken up at 5:30 though and I think I may need to remove the recently added B-complex to see if that helps.
Overall seems happier and more engaging. Teachers said he's been more engaging in class. My wife said he is answering questions better.

None of this has been a dramatic change but it is a noticeable improvement so we are going to stick with this for a while. We are using regular racemic Healthy Origins ALA, not R-ALA or stabilized. We did chelate for 2 years off and on and have completed 48 rounds but none were done around the time of this testing. Anyways, things have been going well and I just wanted to share.
No scientific evidence that autism has a toxic or allergic basis. - Mr. Barrett

dabaxter
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Re: High dose ALA having good effect

Postby dabaxter » Wed Mar 05, 2014 9:08 am

Interesting. I'd like to hear how it goes for a longer term.
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kulkulkan
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Re: High dose ALA having good effect

Postby kulkulkan » Wed Mar 05, 2014 2:22 pm

Looks like everything is going in the right direction. Just curious, how much Vitamin A and D are you dosing?

For us, we tested low in Vitamin A again, and Vitamin D was 43 (down from 49 before) - we had stopped supplementing these aggressively less than a year ago and would like to start again. I know Dr. Cannell recommends 75 as the Vitamin D level for ASD, but haven't seen anyone reach that level here.

fiveyearswasted
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Re: High dose ALA having good effect

Postby fiveyearswasted » Wed Mar 05, 2014 8:45 pm

kulkulkan wrote:Looks like everything is going in the right direction. Just curious, how much Vitamin A and D are you dosing?

For us, we tested low in Vitamin A again, and Vitamin D was 43 (down from 49 before) - we had stopped supplementing these aggressively less than a year ago and would like to start again. I know Dr. Cannell recommends 75 as the Vitamin D level for ASD, but haven't seen anyone reach that level here.


I give a 25,000iu Vit A pill about once a week.

Vit D is a strange one for us. When we first started supplementing large amounts of it, his levels actually dropped down to 34. I gave him 50,000iu every day for almost a month straight and that got his levels up to 60. Recently I have been giving 10,000iu daily and his last test was at 58. It looks like he needs at least 10,000iu to stabilize him. I would like to get to 80 but the weather is warming up and I think getting some sun will help so I am going to stay with this level for a while.
No scientific evidence that autism has a toxic or allergic basis. - Mr. Barrett

Leo
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Re: High dose ALA having good effect

Postby Leo » Fri Mar 07, 2014 4:39 pm

Nice post, we are also doing ALA but as per Andy Cutler protocol. I was thinking increasing dose from 14 mg to 33 mg for 33 lb child (5 year old), was thinking hard of potential issues as AC followers say not to do it, but this post had given me lot of courage.

Many thanks for sharing. God bless your child.
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fiveyearswasted
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Re: High dose ALA having good effect

Postby fiveyearswasted » Mon Mar 10, 2014 6:50 pm

My son learned how to ride a bike yesterday. I'm so stoked about this. He's 9yrs old and it is something we've been working on but I didn't think he had the coordination for this quite yet. His 6yr old brother picked it up last weekend so I think he was really motivated to copy him. I know this isn't exactly ALA related but things have been going great!
No scientific evidence that autism has a toxic or allergic basis. - Mr. Barrett

luis
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Re: High dose ALA having good effect

Postby luis » Mon Mar 10, 2014 10:35 pm

fiveyearswasted wrote:My son learned how to ride a bike yesterday. I'm so stoked about this. He's 9yrs old and it is something we've been working on but I didn't think he had the coordination for this quite yet. His 6yr old brother picked it up last weekend so I think he was really motivated to copy him. I know this isn't exactly ALA related but things have been going great!


WOW !!!

Following this thread with close attention.

JeniB
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Re: High dose ALA having good effect

Postby JeniB » Tue Mar 11, 2014 8:34 am

are you giving any thiamine? still dosing two times a day?

Glad he's doing so well!
Jen
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fiveyearswasted
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Re: High dose ALA having good effect

Postby fiveyearswasted » Tue Mar 11, 2014 11:07 pm

JeniB wrote:are you giving any thiamine? still dosing two times a day?

Glad he's doing so well!
Jen


Thanks!
I ran out of straight thiamine and I stopped the B-complex. For the time being, his B1 levels look fine. Maybe I'll do a once a week b-complex.

It has been almost 6 weeks now, (I should have mentioned that it takes about 2 weeks to get the lab results) exact same protocol. 2x 600mg per day. Not a single bad side effect has been noted. He's eating a lot. I noticed this several weeks ago so I am not sure if this is related or not. My wife noticed it more recently.

He still has a white strawberry tongue. (http://www.stankurtz.com/biomedical/ton ... y-ill.html) The ALA has done nothing for this so far unfortunatley. Still one of our biggest enigmas.
No scientific evidence that autism has a toxic or allergic basis. - Mr. Barrett

luis
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Re: High dose ALA having good effect

Postby luis » Fri Mar 21, 2014 6:34 pm

5years,

How's your boy doing on high dose ALA ?
Which brand do you use, please ?
I've upped my son's dosage to 100 mg, twice a day, with good result. Thinking of upping it still more.

Luis

fiveyearswasted
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Re: High dose ALA having good effect

Postby fiveyearswasted » Sun Mar 23, 2014 7:52 pm

He is still doing great.
We missed a few doses, one night dose and then the next morning, and he was notably worse. Less focused and lots of stimming. This cleared up when we got him back on schedule.

Also we had some bratwurst sausages (had MSG in them) and that seemed to set him off so we need to make a note to avoid them in the future.

We use the Healthy Origins ALA. It is just regular ALA, not stabilized or R-ALA.
Here is a link: http://www.iherb.com/Healthy-Origins-Al ... ules/10097
You might get a discount if you use this code: NUV229 (not sure about this though)
It is the cheapest ALA that I trust.


Glad to hear this is working for your son too! Keep us posted on any progress.
No scientific evidence that autism has a toxic or allergic basis. - Mr. Barrett

luis
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Re: High dose ALA having good effect

Postby luis » Sun Mar 23, 2014 8:42 pm

I've been uping his dose. Today he got 400 mg, twice. Much more happy (not yeasty) ! Eye contact improved.

Thank you for the tip !!!

JeniB
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Re: High dose ALA having good effect

Postby JeniB » Mon Mar 24, 2014 5:32 am

This whole thread is very interesting. What strikes me is the immediate Stimming with missing doses. I would wonder if you're right and it's just the MSG? or I wonder if the daily large dose of it, is helping the most and missing a dose is allowing resettling? There are tons of people out there that take 600 mg of ALA with little bad effect, has to be since it's sold in these doses in most health food stores. I'm also beginning to wonder if the bad chelation reactions are from people with a major thiamine issue? Please keep updating how your kids are doing. Maybe, to see if it's missing the dose that caused the issues, give the sausage again when you haven't missed a dose? I know you hate getting a reaction again, but it may be worth it to see how it is working or what it's doing. Do you have the ability to run a metals test too? I can't seem to let go of the thought with a AC protocol person on the adult forum, she had run several tests during ALA rounds and had no mercury at all coming out and when she ran a test during an IV vitamin C, magnesium, and zinc infusion, she dumped tons of mercury. Wonder what's going on with the doses used in AC of ALA or what is causing the bad effects from others that have claimed to try a large dose of ALA and ended up in bed and incapacitated for a week? Maybe it's stopping after one big dose that's doing the damage?
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luis
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Re: High dose ALA having good effect

Postby luis » Mon Mar 24, 2014 8:15 am

Or maybe it could be due to the viral backfire ? In his book, Dr. Goldberg says that he never stops the antiviral cold turkey, because this would imbalance the immune system and let the doors opened to a viral strong reaction.
My opinion is that ALA is acting as an antiviral here (in high dose), possibly by increasing glutathione.

fiveyearswasted
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Re: High dose ALA having good effect

Postby fiveyearswasted » Mon Mar 24, 2014 7:32 pm

JeniB wrote:This whole thread is very interesting. What strikes me is the immediate Stimming with missing doses. I would wonder if you're right and it's just the MSG? or I wonder if the daily large dose of it, is helping the most and missing a dose is allowing resettling? There are tons of people out there that take 600 mg of ALA with little bad effect, has to be since it's sold in these doses in most health food stores. I'm also beginning to wonder if the bad chelation reactions are from people with a major thiamine issue? Please keep updating how your kids are doing. Maybe, to see if it's missing the dose that caused the issues, give the sausage again when you haven't missed a dose? I know you hate getting a reaction again, but it may be worth it to see how it is working or what it's doing. Do you have the ability to run a metals test too? I can't seem to let go of the thought with a AC protocol person on the adult forum, she had run several tests during ALA rounds and had no mercury at all coming out and when she ran a test during an IV vitamin C, magnesium, and zinc infusion, she dumped tons of mercury. Wonder what's going on with the doses used in AC of ALA or what is causing the bad effects from others that have claimed to try a large dose of ALA and ended up in bed and incapacitated for a week? Maybe it's stopping after one big dose that's doing the damage?


The two missed doses and the sausage incident were on different days. With the sausage incident my son had his full doses of ALA. I posted in another thread about a study on pubmed that showed ALA helping to regulate glutamate in the brain. We probably went over the controllable limit with the sausages. That said, he was definitely worse when he missed two consecutive doses.........and I am trying to think back now if he had anything that could have had MSG in it on those days too.

It is certainly intriguing why some react so badly to ALA. It could be any number of things but one thing for sure is that some people get wrecked by it. My sons testing seemed to indicate more of a problem with cadmium than mercury. Of course he hasn't had any fillings in his teeth. Maybe someone with a large mercury burden would react differently.

On metals testing we can do metals testing and I am wondering how best to do this. I would not expect much to come out on a urine metals test with ALA because this is going to increase excretion through the bile. I would like to run one test with ALA + DMSA and another with just DMSA to see the difference. Ideally this along with a fecal metals test would give a clearer picture but I somehow doubt I will be doing that. I am still kinda leary on doing DMSA chelation due to the ALA working so well that I don't want to run the chance of messing it up. However, it makes sense that if ALA is helping intracellularly, then this dumping of metals might overwhelm the excretion pathways and periodic DMSa rounds would help keep those pathways open.

Looking back I wish I would have tested thiamine earlier. My son's levels were fine but we only tested after starting the high dose ALA. My son is / was low sulfur with low levels of cysteine, methionine, taurine, and homocysteine. ALA seemed to fix the low homocysteine which may be an indication of fixing the cysteine and / or methionine. I wonder if it could have done something to fix thiamine. Maybe provided enough sulfur to spare thiamine???
No scientific evidence that autism has a toxic or allergic basis. - Mr. Barrett

fiveyearswasted
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Re: High dose ALA having good effect

Postby fiveyearswasted » Mon Mar 24, 2014 7:58 pm

luis wrote:I've been uping his dose. Today he got 400 mg, twice. Much more happy (not yeasty) ! Eye contact improved.

Thank you for the tip !!!



Somehow you would expect more yeast with this much sulfur or at least more yeasty behavior but the exact opposite is happening. Same here. We're seeing better behavior.

Regular ALA absorbs at about 30% from the gut which leaves 70% behind. I am going to have to pick up some stabilized Na-R-ALA and compare.
No scientific evidence that autism has a toxic or allergic basis. - Mr. Barrett

FatherOf2
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Re: High dose ALA having good effect

Postby FatherOf2 » Tue Mar 25, 2014 9:44 am

Would a high dose ALA 2x/day help us? We did a hair test, which showed that neither mercury nor lead were a problem. The AC counting rules didn't indicate any heavy metal burden either. We tested urine during the highest DMSA dose round (12.5mg every 4 hours) and exceretion of mercury and lead were zero, but arsenic was high. We tested urine porphyrins and saw high oxidative stress markers. High 7cxP, 5cxP, pcP and cP suggested a possible mercury contamination, but according to our Dr R, they could also be explained by mitochondrial disorders. We did DMSA rounds and saw some improvements on rounds 2-3, but regression in behavior on rounds 6 (DMSA + ALA), 7 (DMSA), and 8 (DMPS). I first suspected the ALA as the reason for increased irritability, but then DMSA-alone and DMPS-alone rounds caused the same increase in irritability. I think it was caused by an exhausted supply of iron or some metal. I think that my son is affected by an oxidative stress because after we started high-iron supplementation a few days ago, we saw an increase in stimming and worse verbal skills (using wrong words in sentences or hard-to-understand words). We backed-off the iron dose to 45mg/day and will possibly go further down to 30mg/day. But we noticed a reduction in irritability on high iron.

luis
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Re: High dose ALA having good effect

Postby luis » Tue Mar 25, 2014 12:39 pm

JeniB wrote:are you giving any thiamine? still dosing two times a day?

Glad he's doing so well!
Jen


I had to back up a bit today. He wasn't that good yesterday. Today I'm givin him 200 mg of ALA, twice.

Simultaneously, I gave him B1 coenzyme 5 mg and Allithiamine 100 mg, along with B2 coenzyme, for absorption of B1.
Also, I gave him Molybdenum, to metabolize sulfites (that degrade thiamine).

He is already acting much better than yesterday. I've been reading a lot about Thiamine and I'm convinced of its importance in our kids.

JeniB
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Re: High dose ALA having good effect

Postby JeniB » Thu Mar 27, 2014 8:55 am

Sulfur would reduce thiamine instead of increase it. That's what I'm seeing. Thiamine treats sulfur toxicity. I know thiamine uses sulfur somehow, but it's different than adding in sulfur supplements or foods. It's more of what is produced when you crush garlic, this is the chemical in allithiamine type of thiamine. Avoiding sulfur seems to really help my son a lot. It's the bacteria. I think it's why iron is an issue as well. Kid isn't getting it, the bacteria are.
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fiveyearswasted
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Re: High dose ALA having good effect

Postby fiveyearswasted » Thu Apr 17, 2014 10:47 pm

Quick update.

We are still on the same protocol, 600mg 2x a day. No problems noticed. One thing, if we miss a dose, it is a night and day difference. Stimming gets pretty bad, very hard time focusing, waking up very early. Usually takes 2 on time doses to resolve.
Not sure if this is related or just if he is reaching that age but he is putting on weight very fast now. My wife said it seemed like he "got a belly" overnight. He always hovered around the lowest end of normal weight or sometimes a bit below so this is quite nice.

Had a really good day yesterday. Attention was good and he initiated conversation with my wife a few times.
We had a few small cucumbers from the garden on the kitchen counter that I was going to prep for dinner. He came up and wanted to use the peeler on them. He used to hate veggies, especially those that "crunch". I helped him with the peeler initially then he took over from there. When my wife came home he was really excited to show her what he did. Then he went on to eat a bunch of the chopped cucumbers at dinner. Very good day.

I ordered some Na-R-ALA mixed with B1 and Moly from CustomCapsule.com. Large order but nicely priced.
Per Pill Breakdown:
Na R-Alpha Lipoic Acid (NaR-ALA) 230 MG
Thiamine HCl (Vitamin B1) 10 MG
Molybdenum (Molybdenum citrate) 200 MCG
Works out to $95 for 300 pills with shipping.
I had an older bottle of a similar mix that was in my fridge for 2 years that I forgot about. A few pills left in there, opened them up and they were in perfect shape. It seems the sodium stabilization really works.
I'll give this a try and if it doesn't work was well as the racemic ALA then I'll go back.

Got to find something for the low lithium. Just found out the Rx lithium carbonate for his weight suggests 1800mg a day to start then ~900mg to maintain. I am giving just ~20mg of lithium orotate per day and that probably isn't going to cut it.



How are things going for you Luis?
No scientific evidence that autism has a toxic or allergic basis. - Mr. Barrett


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