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Fish oil reaction due to low carnitine

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Quick post to ask if anyone else has experienced this. DS seems to have increased anxiety/mood flux after fish oil. We discontinued it long ago. Today, heard a video saying that those who are low in carnitine, have reactions to fish oil within 1 week of ingestion (ours was more immediate). I have not yet done the further research but curious if others have seen that connection? And I'm not sure if the reaction is to fish oil supplements or just fish. This is on my mind this week - because we are in a more mild flare - and after some wild salmon -- his anxiety worsened.

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Interesting! I never seem to tolerate fish oil supplements well either - seems to exacerbate anxiety/depression. This has always baffled me since it's posted everywhere about how good it is for you. Will b interested to read others comments... Btw, I don't think it's related specifically to fish, more so likely to DHA:EPA (will research the potential carnitine connection u wrote about - very curious about this).

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Btw, organic hemp oil (look up Nutiva brand) seems to help my anxiety/depression in a way I've never experienced with fish oil supplements. Fyi. :)

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Thanks! Today was the first I heard of the carnitine connection. It was a statement made by Jim Adams on the Autism Series link that is posted on this board a couple topics down. I have yet to look into this deeper but he was very convincing! Will look into the hemp oil. Thanks!

 

Jim Adams, PhD

Talk Title: How Diet and the Environment Affect the Gut Microbiome and Nutrient Status

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I hadn't heard of the Carnitine connection either but DS reacted w/ in 15-20 min w/ a flare in all symptoms when he was took it. Once I connected dots we discontinued ASAP, but I was giving him a high dose of O3's not just Fish Oil. Even chia, flax and other O3 sources were disaster for him. I believe that since it crossed the BBB it was impacting his already sky high dopamine level. He also reacted really negatively to Vit D. Basically the same reactions as I saw w/ O3's.

 

When he was really really ill his Carnitine was tested and the supplements to improve it made him crazier and gave him insomnia.

He's improved so much over the past 2 years and I still keep him away from Vit D and O3 for fear they will do a number on him. Perhaps I will re-visit the Carnitine supplements based on your post....thank you :)

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DD14 has been totally asymptomatic for PANS/bartonella for a year or so now, her only remaining symptom had been a propensity toward motor ticcing - her vocals are long gone, thank goodness.

 

Her ticcing is generally only suggestible but sometimes becomes visible to herself and me (not usually others). It began again last summer, and through the fall got progressively worse. My husband blamed it on the stress of starting high school, but to me she didn't seem stressed.

 

She has had poor reactions to fish oil supplements in the past, so this summer I started adding hemp oil to her whey/kefir smoothies. I didn't connect the dots when low level ticcing started.

 

This fall I began supplementing with Cod Liver Oil for vit A because I hadn't found a good source of pastured, organic liver, and it just seemed easier. Ticcing just got worse and worse.

 

It took a while for me to remember about the fish oil reaction (it had been so long ago), but as soon as I remembered, I discontinued the CLO - ticcing decreased. When I discontinued hemp oil her ticcing completely resolved.

 

She seems to have no trouble with the more saturated oils (coconut and palm kernel oil) and monounsaturated olive oil and butter. PUFAs seem to be the problem.

Edited by rowingmom

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Hello

 

I was just wondering if rather than the fish oil/hemp oil if it could be the Vitamin D component. Fish oil is fairly high in Vitamin D, I am seeing about 2000 IU per tablespoon and that hemp oil is only plant with Vitamin D not sure if that's true mind you...

 

Only thought it worth a mention as my ds can't seem to handle Vitamin D supplementation at all. Our ped did explain why this could be to me, something along lines of it being a brain steroid etc with lots of receptors in brain

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The rationale from Jim Abrams regarding carnitine: "One unpublished study by Audhya of 400 children with autism found that about 1-2% had a severe behavioral reaction to fish oil within a few days, resulting in extreme behavioral problems. These symptoms disappeared within a few days after stopping intake. Blood testing revealed that these children had a carnitine deficiency (see section on Carnitine), which is needed to carry long-chain fatty acids into the mitochondria, and to transport short and medium chain fatty acids out of the mitochondria. Supplementation with low dose carnitine (about 200 mg/day) allowed the children to tolerate fish oil without any problem. Since the major source of carnitine is beef and pork, people who avoid those foods may want to start with very low doses of fish oil, and if there is a problem add a carnitine supplement or eat beef or pork regularly."

 

I of course wonder why the large study is unpublished....

 

But, yes the vit D as part of the fish oil is definitely an issue. DS14 does react to just plain D as well.

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DD14 doesn't react to vit D, only the PUFAs.

 

I supplement 1000 IUs in the winter, and she gets lots of sun in the summer. We eat plenty of red meat, although it is lamb (pastured), not beef or pork.

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Hello

 

Our 10 yo PANS daughter reacted with otherwise uncharacteristic irritability / rage several days after I began giving her a high dose of liquid Omega 3 daily (Barlean's Organic Oils - Omega Swirl Fish Oil).

 

It was surprising because at the time she was in PANS remission; totally healthy with zero PANS symptoms, taking only abx and the occasional Iburprofen. Of course we assumed we were helping her by giving her these supplements, but I was carefully tracking her behaviors against her diet and meds at the time (abx), and the causal relationship was clear once I stopped giving her this supplement. She also reacts this way after eating too much cheese or dairy, which is rich in Omega 3.

 

At the same time I documented very light, petechiae rashes appearing on her back and stomach. These benign rashes (not raised, not itchy, just speckled and odd) and they would come and go. I didn't pay much attention to them, but they turned out to be signifiers of Vasculitis, an auto immune condition which turned out to be the root cause of her PANS symptoms, but we were unaware of the connection at the time.

 

Via 23& Me + her Livewelllo report, I later learned the following:

 

The FADS2 gene encodes an enzyme known as Fatty acid desaturase 2, which causes desaturation of fatty acids, converting dietary -linolenic acid (ALA) to omega-3 long-chain fatty acids (EPA), a precursor of the active form - DHA. Blood levels of Poly Unsaturated Fatty Acids (PUFAs) are influenced not only by diet, but to a large extent also by genetic variants. These variants are common in Europeans. (NAME) has low efficiency for converting ALA to EPA, due to GG genotype for rs1535 compared to people with other genotypes. Other clinical, genetic or environmental factors may influence this outcome. People with low efficiency genotypes may not benefit from taking plant sources (ALA) of omega fatty acids and may benefit more from micro algae oil which has more of the EPA form."

 

I've been unable to make any further connections between this information about her genetic predisposition and her reaction to Omega 3 supplementation, other than I know to steer clear of the liquid form. My rudimentary assumption is that Omega 3s play some role in her BBB permeability, which simply equals (for us) DON'T USE THEM.

 

Hope this is helpful.

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@ Albymom - have you trialled the micro algae oil, or are you steering clear of all PUFAs?

 

DD14 used to have intermittent petechiae rashes on her back, chest and thighs, which would last for 3-4 days and then disappear. No itching and hardly noticeable. She hasn't had them for a while so I assumed they were associated with her infections. Rashes are so hard to diagnose.

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