Great info! Can you clarify a few things...
Ok, questions...
You said this on the FB group:
Caffeine raises the neurotransmitter acetylcholine by inhibiting the enzyme acetylcholinesterase which breaks down acetylcholine. And acetylcholine gives skeletal muscle the signal to contract. So PET is a neuromuscular dysfunction of the muscles in the ear. That's probably why alcohol improves PET because alcohol increases dopamine which is in an equilibrium with acetylcholine and therefore lowers the latter.
So are we saying that acetylcholine, while usually an important neurotransmitter and great for improving memory, in our cases is causing muscular spasm and therefore PET?
Personally, I eat extremely healthy, but would be concerned if this is true, as my choline levels would be off the charts given I eat an abundance of most of the foods highest in choline - ie. eggs/dairy/meat/fish/avocado/nuts....
Re copper...
I'm in total agreement with the copper deficiency theory, and were we to look at raising our copper intakes naturally, then some of the best sources - liver, fish, avocados, nuts, seeds - are also all high in choline. So perhaps a dedicated copper supplement is a better option..?
Another thing I've learnt while researching - and this certainly applies to me - is "zinc-induced copper deficiency". I won't post medical links but there are many. Zinc is already known as a copper inhibitor, so taking high dose zinc supplements for more than a few weeks will by default, lower your copper levels. This is becoming more and more common as doctors/pharmacists/naturopaths prescribe zinc for a variety of ailments, all the while being unaware of the mineral imbalance it's causing.
Personally, I have tested at the bottom end of the range for serum copper and slightly below the acceptable range for ceruloplasmin. This wasn't surprising to me as I'm experiencing a number of other symptoms that would point to this, which I would expect others to have along with PET, were copper to be the cause. As such, I've started treating with copper bisglycinate (Thorne brand), 2-4mgs per day. I'm seeing a specialist in a few weeks to discuss this approach, amongst other things. Only possible side-effect so far is that it encourages too many bowel movements, but I can't say for sure it's the cause. My understanding is that it can take months to boost copper levels, even at 6-8mgs per day. Any thoughts on any of this are very welcome.
While my doctor doesn't see an issue with me being at the very low end or slightly below the range, it does pose the question "what is an ideal level?", especially in order to eliminate the symptoms of PET (assuming the correlation). I imagine it's different for everyone and perhaps only time will tell. I believe it's all about having optimum levels (of everything) - eg. you can be in the range for Vitamin D, but still feel poorly and be symptomatic as though you had a deficiency).
As I've mentioned previously, I'd encourage everyone with PET to get their serum copper and ceruloplasmin levels tested and share them here.
Cheers
Re supplementation...
Is there anything to suggest it's required, and going to be a better alternative than simply boosting our intake of high-copper foods?
Apparently even the tiniest serving of beef liver can give you 4mgs!
Does the body find it harder to absorb copper from food sources, compared to supplements?
Also, I'm interested in your post regarding the type of copper supplement to use....
I wouldn't recommend any blue copper (which smells like wet dog), one that definitely works is MitoSynergy MitoActivator Extra Strength, but that is extremely expensive. An alternative is Nature's Plus Copper 3 mg (green copper).
Green copper tends to be more cuprous (monovalent) while blue copper tends to be more cupric (divalent). The body can use both forms but monovalent copper is easier to absorb by the intestinal transporter CTR1. If it is divalent it has to be reduced by another electron donator. The isoflavones are probably able to donate an electron as does niacin, that's why the only available cuprous copper supplement is a combination of niacin and copper.
I've just noticed that the Thorne product I'm using has clear capsules and the contents are distinctly blue.
So if this is just a case of bioavailability, then could one simply take it with soy milk (as suggested on the group)?
Firstly, as the creator of the group, would you mind telling us of your situation...
- do you have PET, and if so can you give us some background?
- have you had your copper tested or tried supplementing?
Ok, questions...
You said this on the FB group:
Caffeine raises the neurotransmitter acetylcholine by inhibiting the enzyme acetylcholinesterase which breaks down acetylcholine. And acetylcholine gives skeletal muscle the signal to contract. So PET is a neuromuscular dysfunction of the muscles in the ear. That's probably why alcohol improves PET because alcohol increases dopamine which is in an equilibrium with acetylcholine and therefore lowers the latter.
So are we saying that acetylcholine, while usually an important neurotransmitter and great for improving memory, in our cases is causing muscular spasm and therefore PET?
Personally, I eat extremely healthy, but would be concerned if this is true, as my choline levels would be off the charts given I eat an abundance of most of the foods highest in choline - ie. eggs/dairy/meat/fish/avocado/nuts....
Re copper...
I'm in total agreement with the copper deficiency theory, and were we to look at raising our copper intakes naturally, then some of the best sources - liver, fish, avocados, nuts, seeds - are also all high in choline. So perhaps a dedicated copper supplement is a better option..?
Another thing I've learnt while researching - and this certainly applies to me - is "zinc-induced copper deficiency". I won't post medical links but there are many. Zinc is already known as a copper inhibitor, so taking high dose zinc supplements for more than a few weeks will by default, lower your copper levels. This is becoming more and more common as doctors/pharmacists/naturopaths prescribe zinc for a variety of ailments, all the while being unaware of the mineral imbalance it's causing.
Personally, I have tested at the bottom end of the range for serum copper and slightly below the acceptable range for ceruloplasmin. This wasn't surprising to me as I'm experiencing a number of other symptoms that would point to this, which I would expect others to have along with PET, were copper to be the cause. As such, I've started treating with copper bisglycinate (Thorne brand), 2-4mgs per day. I'm seeing a specialist in a few weeks to discuss this approach, amongst other things. Only possible side-effect so far is that it encourages too many bowel movements, but I can't say for sure it's the cause. My understanding is that it can take months to boost copper levels, even at 6-8mgs per day. Any thoughts on any of this are very welcome.
While my doctor doesn't see an issue with me being at the very low end or slightly below the range, it does pose the question "what is an ideal level?", especially in order to eliminate the symptoms of PET (assuming the correlation). I imagine it's different for everyone and perhaps only time will tell. I believe it's all about having optimum levels (of everything) - eg. you can be in the range for Vitamin D, but still feel poorly and be symptomatic as though you had a deficiency).
As I've mentioned previously, I'd encourage everyone with PET to get their serum copper and ceruloplasmin levels tested and share them here.
Cheers
Re supplementation...
Is there anything to suggest it's required, and going to be a better alternative than simply boosting our intake of high-copper foods?
Apparently even the tiniest serving of beef liver can give you 4mgs!
Does the body find it harder to absorb copper from food sources, compared to supplements?
Also, I'm interested in your post regarding the type of copper supplement to use....
I wouldn't recommend any blue copper (which smells like wet dog), one that definitely works is MitoSynergy MitoActivator Extra Strength, but that is extremely expensive. An alternative is Nature's Plus Copper 3 mg (green copper).
Green copper tends to be more cuprous (monovalent) while blue copper tends to be more cupric (divalent). The body can use both forms but monovalent copper is easier to absorb by the intestinal transporter CTR1. If it is divalent it has to be reduced by another electron donator. The isoflavones are probably able to donate an electron as does niacin, that's why the only available cuprous copper supplement is a combination of niacin and copper.
I've just noticed that the Thorne product I'm using has clear capsules and the contents are distinctly blue.
So if this is just a case of bioavailability, then could one simply take it with soy milk (as suggested on the group)?
