Know Your Risk for CAA; Take Precautions Now

Alzheimer's, cardiovascular, and other chronic diseases; biomarkers, lifestyle, supplements, drugs, and health care.
Post Reply
User avatar
Julie G
Mod
Mod
Posts: 9187
Joined: Sat Oct 26, 2013 6:36 pm

Know Your Risk for CAA; Take Precautions Now

Post by Julie G »

In a very personal way, it's come to my attention that cerebral amyloid angiopathy (CAA) may be more prevalent than we initially suspected. The first warning sign is often a hemorrhagic stroke from which many never recover. While some statistics say that 50% of those with AD have it, other researchers think that number is much higher. It also tracks well with carriage of ApoE4 in a dose dependent fashion, with increasing risk as we age. See my recent blog CAA: Notes From the Frontlines to learn more.

This risk presents a conundrum to our population as a body of research suggests that we need higher amounts of omega-3s, but fish and algal oil have anticoagulant properties which can further increase our risk. This is something we all need to navigate as safely as possible. For me, it feels a bit like walking a tightrope. I'm trying to consume more SMASH (sardines, mackerel {NOT king mackerel}, anchovies, salmon and herring) fish but finding it really hard to eat healthfully with my added caretaking responsibilities.
Free at Sixty
Contributor
Contributor
Posts: 3
Joined: Thu Jun 06, 2019 7:17 am

Re: Know Your Risk for CAA; Take Precautions Now

Post by Free at Sixty »

Thank you so much Julie, for your recent article, "Know Your Risk for CAA; Take Precautions Now." I just read it this morning in the Apollo newsletter and that has prompted me to find my way back to this group to thank you. It's been so helpful to me personally because I've been feeling very alone in my efforts to find out how to do as much prevention as I can with this diagnosis.

Just one week ago I had a 1/2 hour visit with a neurologist for the first time since I found out (thru 23 and Me 4 or 5 years ago) that I have 2 APOE4 genes. I was referred to a neurologist after I had to have an MRI to rule out a benign tumor near either ear last summer. The MRI was done to rule out ear tumors before I could go ahead and get hearing aides for a moderate hearing loss. The MRI results included this: "There are multiple chronic microhemorrhages primarily in the cerebral cortex suggesting amyloid angiopathy. Neurology consultation might be of use."

I'm sure you won't be surprised to hear that this neurologist said a number of things that were not helpful, including:
warning me not to be taken advantage of by those trying to make money off my worry over my genetic status;
telling me that inflammation in the brain was not an issue that I should be concerned about; insisting that fish oil does not thin the blood significantly; that frequent mild headaches have nothing to do with this; and there is no need for any follow-up despite my documented mild cognitive loss. He did advise me to keep my blood pressure normal (which is still is) and not to take any prescription blood thinners or aspirin.

I really don't want to give up my 3 grams of fish oil a day because I'm convinced that it lowers my discomfort from inflammation but I'm now feeling up to taking that on and eating fish (for me wild caught salmon and cod) everyday for lunch. I'm also very careful with eating only pasture raised eggs and chicken and occasionally 100% grass fed bison/venison. I'm actually excited to be trying some wild boar for the first time soon, which is actually much leaner than the pasture raised chicken.

Anyway, please remember that all of your efforts to spread the word are helping so many people that you never hear from directly!
In gratitude,
Patty :P
User avatar
Lulu
Contributor
Contributor
Posts: 54
Joined: Fri Mar 17, 2017 1:49 pm

Re: Know Your Risk for CAA; Take Precautions Now

Post by Lulu »

With my recent health issues, and my holistic cardiologist insisting my husband and I watch Forks over Knives, and The Game Changers documentaries, I have now stopped all animal foods (including eggs, all dairy, red meat, white meat, even fish), and all choline, lecithin, carnitine, and all fish oil supplements. They all increase formation of TMAO, a toxic substance in our bodies, which is implicated in neurodegenerative disease, heart disease and even cancer. I was hoping Algal oil would be safe, but now I'm not sure. Apparently choline and omega 3's from plant sources do not increase TMAO.

Vegans rarely have any TMAO production in their bodies, although Dr. Hazen of the Cleveland Clinic said the highest TMAO level they ever saw was a vegan woman who was giving herself lecithin enemas. (what???) (lecithin is a fat, so perhaps that is the reason it increases TMAO? I don't know) Vegans can also get plenty of protein, choline and omega 3's from plants. Who knew??? Not me.

I'm now on a new path and have to figure all of this out, but from what I'm reading and seeing in the literature, plant based and omitting all animal protein, choline / carnitine / lecithin / fish oil supps appears to be the healthier way to go. Time will tell, but I'm truly shocked at what the research has shown me.

I never ever thought I would stop my fish oil supplements, or go vegan, but here I am.

I'm so glad you posted this warning, thank you.

Lu
Plumster
Senior Contributor
Senior Contributor
Posts: 620
Joined: Mon Oct 30, 2017 6:19 pm

Re: Know Your Risk for CAA; Take Precautions Now

Post by Plumster »

Lulu wrote: Fri Jan 20, 2023 7:41 am With my recent health issues, and my holistic cardiologist insisting my husband and I watch Forks over Knives, and The Game Changers documentaries, I have now stopped all animal foods (including eggs, all dairy, red meat, white meat, even fish), and all choline, lecithin, carnitine, and all fish oil supplements. They all increase formation of TMAO, a toxic substance in our bodies, which is implicated in neurodegenerative disease, heart disease and even cancer. I was hoping Algal oil would be safe, but now I'm not sure. Apparently choline and omega 3's from plant sources do not increase TMAO.

Vegans rarely have any TMAO production in their bodies, although Dr. Hazen of the Cleveland Clinic said the highest TMAO level they ever saw was a vegan woman who was giving herself lecithin enemas. (what???) (lecithin is a fat, so perhaps that is the reason it increases TMAO? I don't know) Vegans can also get plenty of protein, choline and omega 3's from plants. Who knew??? Not me.

I'm now on a new path and have to figure all of this out, but from what I'm reading and seeing in the literature, plant based and omitting all animal protein, choline / carnitine / lecithin / fish oil supps appears to be the healthier way to go. Time will tell, but I'm truly shocked at what the research has shown me.

I never ever thought I would stop my fish oil supplements, or go vegan, but here I am.

I'm so glad you posted this warning, thank you.

Lu
Lulu,

Does this mean that you rely on walnuts, flax and chia seeds? I've been whole foods plant based since 2017 and it's one of the best decisions I ever made. However, I am relying on algae oil DHA. Stroke does run in my family.

I do take choline daily and my TMAO level is minimal.
e3/4 MTHFR C677T/A1298C COMT V158M++ COMT H62H++ MTRR A66G ++ HLA DR
jlp1701
New User
New User
Posts: 2
Joined: Sat May 02, 2020 5:50 pm

Re: Know Your Risk for CAA; Take Precautions Now

Post by jlp1701 »

Julie, I am so sorry to hear about your mother and am relieved she was able to get care so quickly. I hope she continues to improve. This also sounds quite stressful--I hope you are doing well.

Thank you for writing up your CAA findings. As a 4/4 male, I am particularly interested in this. One thing I am confused about is how much fish or algae oil actually increases bleeding risk. It have only done a little searching, but it seems like the research is inconclusive, with some recent studies showing that fish oil does not make bleeding worse (post surgery) and may actually be helpful in hemorrhagic stroke. Separately, it seems like many of the RECODE recommended supplements thin the blood -- it certainly is a perplexing situation!

I look forward to hearing more about any additional research you do on this important topic.
J11
Contributor
Contributor
Posts: 3351
Joined: Sat May 17, 2014 4:04 pm

Re: Know Your Risk for CAA; Take Precautions Now

Post by J11 »

ARIA Dosing 1b.PNG
I posted this slide in the ~ December 23, 2022 posts from the Celebration thread for Aducanumab which were from a Biogen presentation from the web.

What I find of interest is that microdosing of Lecanemab seems like a plausible preventative strategy for CAA. AD patients or those simply with e44 especially have a tremendous amount of this underlying CAA pathology that has never been treated. Then patients with clinical AD go in for mab treatment and they dose at upwards of 1 gm and there is all of this ARIA. Much of the side effects of mabs relates to the fact that the patients had no treatment options for their CAA. It was simply allowed to progress without intervention. With 50% or more of AD patients with CAA illness it is not a surprise that there is so much stroke like behavior in AD.


However, if all you want to do is remove some of this CAA then Lecanemab microdose does not seem like a bad idea. You don't need maximal dosing to achieve that over an extended time. Even now with clinical judgment that does not seem that unreasonable idea, though hopefully they will soon do the clinical research especially using subq dosing to prove it.

Removing this amyloid in the blood vessels in the brain could have significant health benefits. It might reduce risk of hemorrhagic stroke, reduce macrohemorrhages, reduce microhemorrhages etc..
You do not have the required permissions to view the files attached to this post.
Post Reply