Carnitine deficiency, other ways of treating?

[VeganMonkey]

I have been diagnosed with carnitine deficiency 15 years ago and supplements didn't work. So I had it tested recently again and I am still deficient. Again I started taking supplements, this time together with coq10 but it doesn't help. I wonder if it possible that my body can not absorb it? Is it possible to inject it carnitine?

Btw has anyone had the tissue test done where they cut a piece of skin out to test for an illness where the patient is chronically deficient? I had that done but it came out negative. I never did the follow up test which was a muscle biopsy (because it had to be done without anaesthetics at that time, the skin test was also without anaesthetic

 

[caledonia]

What kind of supps have you tried? I'm doing ok with L-carnitine fumarate. That's supposed to be the best form for ME/CFS.

If you're a vegan (I'm assuming this due to your user name), you might want to reconsider that. The highest amount of carnitine comes from red meat. There are many other essential nutrients present in high amounts in meat (B vitamins). Many of us do better on a high protein, cave man type diet.

Carnitine issues can also be due to general mitochondrial issues which can be due to methylation cycle issues. Most of us, if not all of us, have problems with methylation.

Check out this page with info on Rich Vank's methylation hypothesis for ME/CFS if you haven't seen it already. http://phoenixrising.me/treating-cf...e-mecfs-glutathione-and-the-methylation-cycle

 

[VeganMonkey]

I used a vegan L-carnitine. Most carnitine tables are derived from corn. My specialist told me I needed to take it with coq10 he said that helps with absorption. Will ask him to look into it further.

I'll have a look at the article. I have been reading like crazy here since I discovered this site, but I haven read all yet, there is so much!

 

[golden]

i think its good to review diet.

vegan and vegetarian diets get blamed for all sorts. a lot of scientific studies are changing those beliefs.

but coming from a common sense approach i see that the majority of people with m.e. eat meat.

i have seen a lot of people posting stating going onto the cave man diet did nothing - adding meat into their diet did nothing.

some people say it helped.

some people who were meat eaters also say that by going vegetarian vegan or raw helped them.

 

[Mij]

You should also be taking it on an empty stomach.

I take l acetyl carnitine form in combination with R+ alpha lipoic acid.

I agree with the other member that strict vegetarians are at risk of carnitine deficiency.

 

[VeganMonkey]

I was deficient already before I was vegan. Thanks for the tip about empty stomach, will try that
So how would I feel it's working? Do you get less exhausted or do certain symptoms or pains disappear?

 

[caledonia]

I was already taking Co Q 10, then added the l carnitine fumarate in. So if it's a necessary co-factor, I lucked out on that.

I don't take anything on an empty stomach, even stuff you're supposed to. It all seems to work ok despite that. (I can't swallow pills unless I put it in a mouthful of food.)

I got a couple of points in energy on a scale of 0-100. Which doesn't sound like much, but it's the difference between being able to take care of dirty dishes with some regularity and not. Also somewhat less PEM.

I think there are still other things I need to do for energy to see a bigger boost, but you might be different.

 

[Mij]

I was deficient already before I was vegan. Thanks for the tip about empty stomach, will try that
So how would I feel it's working? Do you get less exhausted or do certain symptoms or pains disappear?

I've been sick for 22yrs and have had up and downs in energy production along the way so it's difficult to know how much the l acetyl carnitine is helping. I was never tested to see if I was deficient but had an RBC fatty acids test that indicated very deficient in Omega 3's and my OAT in the energy production section showed below normal levels. My antioxidant status was very low too, I'm assuming my carnitine was deficient too based on the all the other test results.

Knowing that you are deficient is a good start so you will probably be a better judge of how it's working for you.

To answer your question, yes I feel less exhausted and my gait is smoother I no longer feel as though my legs are going to give out or need to lie down right away. Is it from the carnitine? Can't say for sure.

I still get PENE if I exercise beyond my envelope/boundaries and need adequate rest in between any physical or mental activities.. I never had pain.

 

[Mij]

VeganMonkey,

I'm curious, do you have ME? I reread your initial post and you wrote that you've been diagnosed with Carnitine deficiency. I read that IV carnitine is available:
Treatment of Deficiency

L-carnitine supplements are provided for those with both primary and secondary carnitine deficiencies. Oral carnitine is usually the first form of treatment, but if the individual does not respond, IV carnitine is available. Other nutritional counseling and supplementation is also considered, depending upon the cause of the deficiency. For example, for those with a fatty acid oxidation disorder, a fat-restricted diet is encouraged. Vitamins and minerals involved in the synthesis of carnitine may be needed, such as vitamin C, biotin or riboflavi

 

[BEG]

Treatment of Deficiency

L-carnitine supplements are provided for those with both primary and secondary carnitine deficiencies. Oral carnitine is usually the first form of treatment, but if the individual does not respond, IV carnitine is available. Other nutritional counseling and supplementation is also considered, depending upon the cause of the deficiency. For example, for those with a fatty acid oxidation disorder, a fat-restricted diet is encouraged. Vitamins and minerals involved in the synthesis of carnitine may be needed, such as vitamin C, biotin or riboflavi

Mij,
Thanks for that most helpful link.
Brown-eyed Girl

 

[VeganMonkey]

Mij, I have been diagnosed with ME/CFS several times by different doctors in two countries. In the past the criteria where that you couldn't be diagnosed with CFS if you had other illnesses but nowadays it seems they can co-exist and you can still have CFS. I have POTS, IBS and fibromyalgia as well and score 100% on the Ehler Danler Syndrome test, but I need to get that looks at by a separate specialist I think. It is complicated because I don't know which symptom is caused by what.

I'm going to ask my specialists about the carnitine, if maybe I need to use a different dose or injections etc.

 

[ButterflyBreath]

Hi Vegan Monkey.

I have been lacto ovo vegetarian all my life. From what I have read, MOST sources say that if you are a healthy person you get an acceptable amount from diet. Yes, there is less in a vegan diet, but those who's diet is lower in carnitine hold on to the carnitine more and don't excrete it. Carnitine is a non essential amino acid, meaning that it is not essential to get it all from our diet because we make it out of lysine and methionine.

The problems come when we can't absorb it because of gut issues, or well...I'm assuming there are a host of issues that can go wrong. But usually it's not an issue of getting enough.

I've had to research this recently because I have had fatigue for at least 6 years that is getting chronically worse. In 2012 I was diagnosed with methylation issues and have MANY many mutations in that area. Have had brain fog, depression, anxiety, weight gain, and of course fatigue and more. I had tried a standard dose of oral carnitine months ago and it did nothing for me. I read about it more and discovered there is a specific gene associated with carnitine so I checked my 23andme results and saw that I have a bunch of homozygous mutations. So I tripled the dose, and it worked!!!!...for 2 day . For 2 days I felt great but then it quit working. So I knew there was something to it, but I didn't know exactly what.

Finally I have found a good doctor who knows about methylation and carnitine, etc. he ordered the organic acids urine test, which did show that I am very deficient in carnitine. I began IV therapy last Thursday. It took a couple days to kick in, but when it did I felt much better. However I couldn't sleep, so we still need to figure some things out. I might need an injection able kind I can do myself every few days. This leads me to conclude that I might have a problem absorbing it through my digestive system.

I still have bad brain fog and muscle fatigue issues but I also have adrenal insufficiency/fatigue, which can cause that. I wonder if maybe the carnitine issue has caused the adrenal issues, and hence blood sugar issues, hormone issues....*sigh*

I am supposed to do IV therapy for 8 or 12 weeks...can't remember. I will try to report how it goes.

 

[mille100piedi]

Hi Vegan Monkey.

I have been lacto ovo vegetarian all my life. From what I have read, MOST sources say that if you are a healthy person you get an acceptable amount from diet. Yes, there is less in a vegan diet, but those who's diet is lower in carnitine hold on to the carnitine more and don't excrete it. Carnitine is a non essential amino acid, meaning that it is not essential to get it all from our diet because we make it out of lysine and methionine.

The problems come when we can't absorb it because of gut issues, or well...I'm assuming there are a host of issues that can go wrong. But usually it's not an issue of getting enough.

I've had to research this recently because I have had fatigue for at least 6 years that is getting chronically worse. In 2012 I was diagnosed with methylation issues and have MANY many mutations in that area. Have had brain fog, depression, anxiety, weight gain, and of course fatigue and more. I had tried a standard dose of oral carnitine months ago and it did nothing for me. I read about it more and discovered there is a specific gene associated with carnitine so I checked my 23andme results and saw that I have a bunch of homozygous mutations. So I tripled the dose, and it worked!!!!...for 2 day . For 2 days I felt great but then it quit working. So I knew there was something to it, but I didn't know exactly what.

Finally I have found a good doctor who knows about methylation and carnitine, etc. he ordered the organic acids urine test, which did show that I am very deficient in carnitine. I began IV therapy last Thursday. It took a couple days to kick in, but when it did I felt much better. However I couldn't sleep, so we still need to figure some things out. I might need an injection able kind I can do myself every few days. This leads me to conclude that I might have a problem absorbing it through my digestive system.

I still have bad brain fog and muscle fatigue issues but I also have adrenal insufficiency/fatigue, which can cause that. I wonder if maybe the carnitine issue has caused the adrenal issues, and hence blood sugar issues, hormone issues....*sigh*

I am supposed to do IV therapy for 8 or 12 weeks...can't remember. I will try to report how it goes.

 

[mille100piedi]

Mij, I have been diagnosed with ME/CFS several times by different doctors in two countries. In the past the criteria where that you couldn't be diagnosed with CFS if you had other illnesses but nowadays it seems they can co-exist and you can still have CFS. I have POTS, IBS and fibromyalgia as well and score 100% on the Ehler Danler Syndrome test, but I need to get that looks at by a separate specialist I think. It is complicated because I don't know which symptom is caused by what.

I'm going to ask my specialists about the carnitine, if maybe I need to use a different dose or injections etc.

 

[flt4ever]

Sorry for reviving this post. I hope the Op is doing better. But just in case it may still help...and to other new potential readers; there are many different forms of Carnitine. Over here there's a great metabolic explanation of it. At first it explains what Cartinine is, you could scroll straight down to the part "Different Types, Different Benefits". I have studied Carnitine in depth and the guy do explain it quite simply.

Another possible helpful tip would be to point out this product to those who doesn't know about it.


- Regardless of what you take, remember its all about balance.

Courage to all of you!

Fit

 

[mgk]

How much are you taking? You may just need to take more. This study showed that carnitine from food is much better absorbed than supplements:

Bioavailability of dietary L-carnitine is 54-87% and is dependent on the amount of L-carnitine in the meal. Absorption of L-carnitine dietary supplements (0.5-6 g) is primarily passive; bioavailability is 14-18% of dose. Unabsorbed L-carnitine is mostly degraded by microorganisms in the large intestine.

Most of the studies I've looked at use 2 grams. There are some that use even more than that. For example, in this study it was shown that people with a certain genetic condition are carnitine deficient. They were given 50mg/kg -- which amounts to 3.5 grams for a 70kg person -- and even that didn't bring their levels up to that of normal people.

I have that condition by the way and carnitine definitely helps me with pain, cognitive function, and energy levels. It's not an immediate thing. After a few days I settle into a new normal and then I only realize how much it was helping when I stop.