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Hack my reaction? Please help.

Messages
48
Hello everyone;

I have been reading this forum for a couple of months but this is my first post. I have multiple autoimmune conditions that are not pretty well controlled with a paleo diet and a dose of IV drugs each month. However, I continue to have issues with severe fatigue, intermittent brain fog, and really bad environmental sensitivities.

I have been trying to treat my fatigue for many years using supplements. Last year I came across the mitochondria stuff and decided to try alpha lipoic acid and acetyl-l carnitine (in addition to my vitamin D3, potassium, magnesium, and occasional B multi). I felt an increase in energy within the first day. I didn't realize it at the time, but I was becoming more and more anxious each day.

Finally, I had a severe panic attack followed by the development of an absolutely crushing depression. I could barely function. I tried to use the mood cure and other supplements, but could not take the pain. I finally saw a therapist and a doctor and started anti-depressants. One year later I STILL need the antidepressants.

I have been reading about the methylation protocols and am waiting for 23andme results. But I am terrified to try any carnitine supplements again.

Does anyone have any idea what could have happened to screw my brain up so very badly with those supplements? I had never had depression or anxiety before - and this was a life-threatening case.

Thanks so much for any guidance.

TL/DR - alpha lipoic acide and acetyl-l-carnitine caused severe anxiety and depression that are still present one year later.
 

caledonia

Senior Member
I think the problem was actually the alpha lipoic acid, which will detox mercury. If you don't use it the right way it will send mercury to your brain (well according to Andrew Cutler anyway). Mercury has wide ranging mental and physical effects.

I can't see where carnitine would do that, or at least that has not been my experience. I did have trouble with the ALA causing more metal detox than I could tolerate, so I discontinued. Carnitine has been giving me a nice boost of energy with no side effects.

The good news is you should be able to detangle this. Getting your 23andme SNPs done is a first good step.

Do you have or have you ever had mercury fillings and/or other exposure to mercury?

What was the trigger(s) for your environmental sensitivity?
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
Jammies,

Congratulations on your first post and welcome! I'm glad you decided to say something. There are some really smart, kind and helpful people here. Do you have a good illustration of the folate and biopterin cycles? For me, that is key as to understanding what's going on. Biopterin is used to make serotonin and dopamine, and the folate cycle interacts with it. You'll get to the bottom of this yet. :)
 
Messages
48
I think the problem was actually the alpha lipoic acid, which will detox mercury. If you don't use it the right way it will send mercury to your brain (well according to Andrew Cutler anyway). Mercury has wide ranging mental and physical effects.

I can't see where carnitine would do that, or at least that has not been my experience. I did have trouble with the ALA causing more metal detox than I could tolerate, so I discontinued. Carnitine has been giving me a nice boost of energy with no side effects.

The good news is you should be able to detangle this. Getting your 23andme SNPs done is a first good step.

Do you have or have you ever had mercury fillings and/or other exposure to mercury?

What was the trigger(s) for your environmental sensitivity?


Thank you for your reply. I did have 4 mercury amalgams placed when I was a child. Three of them are now gone. Two of them were actually replaced about 3-4 weeks before the depression and anxiety hit. If this is mercury in my brain, am I screwed forever? Shouldn't things be better after a year?

As for the environmental sensitivity, I just don't know what the first trigger was. I was in my late teens/early twenties when I started become really intolerant of any fragrances at all, food chemicals, laundry detergents, etc. I had a LOT of pesticide exposure as a child as I grew up on a large fruit farm. However, my grandmother also had a really strong aversion to any fragrances.

Thanks again for your help. I so want to figure out what is wrong with me. I have missed most of my adult life because of fatigue. Having depression on top of it is more than I can cope with.
 
Messages
48
Jammies,

Congratulations on your first post and welcome! I'm glad you decided to say something. There are some really smart, kind and helpful people here. Do you have a good illustration of the folate and biopterin cycles? For me, that is key as to understanding what's going on. Biopterin is used to make serotonin and dopamine, and the folate cycle interacts with it. You'll get to the bottom of this yet. :)

Thanks for the words of encouragement - it is very kind of you!! I am just diving in to the folate cycles, have not looked at biopterin at all. I'm embarrassed to admit that I have a degree in Biochemistry from many years ago and I work as a scientist in immunology now....but I am still a bit overwhelmed by all this!! The people around here blow me away with their working knowledge of these systems.
 

juniemarie

Senior Member
Messages
383
Location
Albuquerque
jammies with your science background once you get your 23&me results you will be ready to dive in and really make some headway. Many of us stumbled around for a long time trying various supplements and protocols with mixed success. I think its safe to say that once you know your SNP's a much clearer picture of your problem and path opens up. Its still complicated, but your science mind will really be helpful not just for you but those of us here without a mind for science(thats me) who really need and appreciate science minded people like you to help us understand cause without that we are in the dark and clueless.
 

Crux

Senior Member
Messages
1,441
Location
USA
Hi Jammies;

It seems that for any substance, there are going to be positive and negative responses. Then, something may work great, even for years, and begin to cause problems.

I've had this issue too, so, you're not alone. I've had good reactions with ALA and L-Carnitine in the past, but then I developed side-effects. They were not permanent.

There may be simultaneous deficiencies going on. I agree that the 23 and me results will help.

Personally, B12 supplementation really lessened my MCS. Some people have found folate to also help.
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
I am just diving in to the folate cycles, have not looked at biopterin at all.
Jammies,
The chart I used is http://www.heartfixer.com/AMRI-Nutrigenomics.htm. It doesn't have the SHMT reaction in the upper left hand of the folate cycle. It also has some advice that works for some and not for others, but overall the discussions are pretty good. You'll get better information on this site though. (For example, the CBS C699T is not the upregulation they say it is, and folinic acid for SHMT is not tolerated by everyone.) But with the chart at the top of the page, you'll see how biopterin (BH4 and BH2) is key in both anxiety and depression. Understanding just what's going on there - that's a whole different story!

Crux wrote above:
Personally, B12 supplementation really lessened my MCS. Some people have found folate to also help.
Every body is different. That's great for her, but for me methyl B-12 with methyl folate got me into "paradoxical folate deficiency" - sores at the corners of my mouth and lesions like acne on my face, scalp, and maybe feet (or that could be eczema -too early to tell). And now, knowing my other mutations (at the time I only knew MTHFR A1298C heterozygous), it sort of makes sense, meaning I could imagine that the MB12 opened up a pathway that used up more folate than I was taking. Whew! Sorry for all the run-on sentences.

Oh, and biopterin is available online, but it seems that everyone warns not to supplement with it until you get the other things working well, or you could crash. And it's expensive!
 

brenda

Senior Member
Messages
2,263
Location
UK
jammies

Welcome. Good to have another scientific mind on board. When you got your amalgams out did you chelate according to Andy Cutler? I advise you to look at his work. Many think he is the safest on chelating.

I have problems with mercury from my childhood and pesticides later and am pretty sick but still have two fillings.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
Thank you for your reply. I did have 4 mercury amalgams placed when I was a child. Three of them are now gone. Two of them were actually replaced about 3-4 weeks before the depression and anxiety hit.

Mercury is certainly a possibility, but it is also worth considering whether you are sensitive or intolerant of the substances used to replace your amalgams. Some people are.
 

caledonia

Senior Member
Thank you for your reply. I did have 4 mercury amalgams placed when I was a child. Three of them are now gone. Two of them were actually replaced about 3-4 weeks before the depression and anxiety hit. If this is mercury in my brain, am I screwed forever? Shouldn't things be better after a year?

As for the environmental sensitivity, I just don't know what the first trigger was. I was in my late teens/early twenties when I started become really intolerant of any fragrances at all, food chemicals, laundry detergents, etc. I had a LOT of pesticide exposure as a child as I grew up on a large fruit farm. However, my grandmother also had a really strong aversion to any fragrances.

Thanks again for your help. I so want to figure out what is wrong with me. I have missed most of my adult life because of fatigue. Having depression on top of it is more than I can cope with.

Pesticide exposure will certainly screw you up, as will mercury fillings.

Did you use laughing gas (nitrous oxide) when you got your fillings? That's another bad substance for those with MTHFR mutations, and could certainly be a trigger for worse symptoms.

I think you might be able to go back and ask the dentist what materials were put in. I think there might also be a test to see if you're allergic to those materials, but I'm not sure if your dentist could do that or where to get it.

I think it would be better to try and open up your detox pathways (i.e. support methylation) first before attempting to chelate out any mercury. Just doing that will start some metal detox, as will working on the gut (gut bugs also hold onto metals).

You may or may not need to do a specific metal chelation protocol. The Cutler protocol is supposed to get the mercury out of your brain. I would save that until last.
 
Messages
48
Pesticide exposure will certainly screw you up, as will mercury fillings.

Did you use laughing gas (nitrous oxide) when you got your fillings? That's another bad substance for those with MTHFR mutations, and could certainly be a trigger for worse symptoms.

I think you might be able to go back and ask the dentist what materials were put in. I think there might also be a test to see if you're allergic to those materials, but I'm not sure if your dentist could do that or where to get it.

I think it would be better to try and open up your detox pathways (i.e. support methylation) first before attempting to chelate out any mercury. Just doing that will start some metal detox, as will working on the gut (gut bugs also hold onto metals).

You may or may not need to do a specific metal chelation protocol. The Cutler protocol is supposed to get the mercury out of your brain. I would save that until last.

Thank you for your thoughts. I had 1 or 2 amalgams replaced many several years ago and had no reactions. I think the materials were the same but I could check. I am pretty scared of the mercury protocols as I have heard horror stories about them, but will consider them.

Do you have any thoughts on how l-carnitine or ALA could be playing a role here?
 
Messages
48
Jammies,
The chart I used is http://www.heartfixer.com/AMRI-Nutrigenomics.htm. It doesn't have the SHMT reaction in the upper left hand of the folate cycle. It also has some advice that works for some and not for others, but overall the discussions are pretty good. You'll get better information on this site though. (For example, the CBS C699T is not the upregulation they say it is, and folinic acid for SHMT is not tolerated by everyone.) But with the chart at the top of the page, you'll see how biopterin (BH4 and BH2) is key in both anxiety and depression. Understanding just what's going on there - that's a whole different story!


Thank you!! That will be very helpful in making me more literate in this area :)
 

brenda

Senior Member
Messages
2,263
Location
UK
jammies

I am not saying that you should start with chelation, just trying to pin point the main issue. If you got mercury amalgams out by an ordinary dentist and he/she did not take safety measures, then you most certainly were poisoned. It's good to know what Cutler thinks about the issue. He cautions against ALA. If you do have a load of mercury then the methyl b's will stir things up and you will have to go very slowly or even not take them according to your 23andme results.
 
Messages
28
The frequent-dose-chelation group on Yahoo is probably the best place to learn about Cutler's chelation protocol and its safety. If you search back at the adult-metal-chelation group has some discussion about methylation, MTHFR etc. from the mercury perspective too. Worth signing up and reading through imho.
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
jammies

He cautions against ALA. If you do have a load of mercury then the methyl b's will stir things up and you will have to go very slowly or even not take them according to your 23andme results.
brenda,
Could you point me to where I can learn what 23andMe results contraindicate ALA? It's been on my protocol and I have wondered whether it was helping or hurting. I'd love to know what is recommended! Thank you!
 

brenda

Senior Member
Messages
2,263
Location
UK
brenda,
Could you point me to where I can learn what 23andMe results contraindicate ALA? It's been on my protocol and I have wondered whether it was helping or hurting. I'd love to know what is recommended! Thank you!

It is Cutler who cautions against ALA if there are any amalgams remaining. As caledonia says, it has to be taken carefully.
 
Messages
48
The frequent-dose-chelation group on Yahoo is probably the best place to learn about Cutler's chelation protocol and its safety. If you search back at the adult-metal-chelation group has some discussion about methylation, MTHFR etc. from the mercury perspective too. Worth signing up and reading through imho.

Thanks for this suggestion. I joined up and posted some questions. I was taking the alpha-lipoic acid before during and after the removal of 2 amalgam fillings. According to that group, I most likely gave myself mercury toxicity in the brain.

It's overwhelming to think about trying to fix it since it requires me to use ALA again which I am afraid of. For now, I made an appointment to get my last amalgam out.

I'm hoping I'm not going on a wild-goose chase with this. OR that I don't make myself worse again.
 
Messages
48
It is Cutler who cautions against ALA if there are any amalgams remaining. As caledonia says, it has to be taken carefully.


Yes, I had no idea ALA was used for mercury. I was just taking one large dose every morning. Apparently this is the worst thing you can do especially during amalgam replacement. Do you trust this group and this protocol? Have you tried it?