Prodrome blood test results, initial and over time

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aedaed11
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Re: Prodrome blood test results, initial and over time

Post by aedaed11 »

Gail wrote: Thu Jun 09, 2022 3:26 pm
SusanJ wrote: Wed Jun 08, 2022 9:41 pmuu



With MTHFR variants and given your higher homocysteine level, I'm guessing that your body might just be using your choline intake (via food) to help with methylation (due to lack of B vitamins), which means it's not available for making phosphatidylcholine. You're on the right track in thinking about this, and might just need to fiddle with your B vitamin intake, perhaps add some choline (or choline containing foods), and/or take phosphatidylcholine as a supplement (fairly inexpensive).

Honestly, I'd start there, to optimize your methylation pathways and see where it leads you. These actions will likely bring your homocysteine down, too. If it doesn't, then add the TMG.
Thanks for your comments SusanJ! I think that's wise advice to look into other causes for the my low phosphatidylcholine. Thanks for the link to the wiki on Homocysteine. Will do. These systems are so complex - but I will work on my methylation and see if that helps.
I am not an expert and don’t have Apoe4, but I have the same prodrome pattern, (and my father has NAFLD).
I am taking Prodrome Glia for white matter inflammation issues derived from Lyme Disease. I haven’t found a single thread discussing Dayans work other than this. So please keep the discussion going.

I suspect my issue is that I have several genetic variants that might be contributing:

rs7946 T/T:

PEMT pathway is responsible for the body’s production of phosphatidylcholine, which is part of the phospholipid bilayer making up the membranes surrounding our cells. The PEMT enzyme is key in the body’s ability to create choline. Genetic variants that decrease the function of the enzyme cause greater reliance on choline from dietary sources.


rs10791957:
> - A/C: reduced turnover of methionine to phosphatidylcholine

Plus:

rs18J01133: >- A/G: one copy of **MTHFR C677T** allele, enzyme function decreased by 40%


Haven’t tested my father on prodrome (yet), but for me, I tested on the 2nd percentile for Total PhosphatidylCholine at age 32 and with a healthy diet. After 3 months of taking 10g a day of Sunflower lecithin I only went up of the 12th percentile. So I am taking now PC capsules in addition. Will test again soon and share my results.
Last edited by aedaed11 on Fri Jul 15, 2022 7:42 pm, edited 1 time in total.
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Re: Prodrome blood test results, initial and over time

Post by Theresa.J »

aedaed11 wrote: Fri Jul 15, 2022 7:39 pm
Gail wrote: Thu Jun 09, 2022 3:26 pm
SusanJ wrote: Wed Jun 08, 2022 9:41 pmuu



With MTHFR variants and given your higher homocysteine level, I'm guessing that your body might just be using your choline intake (via food) to help with methylation (due to lack of B vitamins), which means it's not available for making phosphatidylcholine. You're on the right track in thinking about this, and might just need to fiddle with your B vitamin intake, perhaps add some choline (or choline containing foods), and/or take phosphatidylcholine as a supplement (fairly inexpensive).

Honestly, I'd start there, to optimize your methylation pathways and see where it leads you. These actions will likely bring your homocysteine down, too. If it doesn't, then add the TMG.
Thanks for your comments SusanJ! I think that's wise advice to look into other causes for the my low phosphatidylcholine. Thanks for the link to the wiki on Homocysteine. Will do. These systems are so complex - but I will work on my methylation and see if that helps.
I am not an expert and don’t have Apoe4, but I have the same prodrome pattern, (and my father has NAFLD).
I am taking Prodrome Glia for white matter inflammation issues derived from Lyme Disease. I haven’t found a single thread discussing Dayans work other than this. So please keep the discussion going.

I suspect my issue is that I have several genetic variants that might be contributing:

rs7946 T/T:

PEMT pathway is responsible for the body’s production of phosphatidylcholine, which is part of the phospholipid bilayer making up the membranes surrounding our cells. The PEMT enzyme is key in the body’s ability to create choline. Genetic variants that decrease the function of the enzyme cause greater reliance on choline from dietary sources.


rs10791957:
> - A/C: reduced turnover of methionine to phosphatidylcholine

Plus:

rs18J01133: >- A/G: one copy of **MTHFR C677T** allele, enzyme function decreased by 40%


Haven’t tested my father on prodrome (yet), but for me, I tested on the 2nd percentile for Total PhosphatidylCholine at age 32 and with a healthy diet. After 3 months of taking 10g a day of Sunflower lecithin I only went up of the 12th percentile. So I am taking now PC capsules in addition. Will test again soon and share my results.
Hello aedaed11 -

As an intern on the Support Team, it's my job to welcome you to the ApoE4.info site and provide you with tips on navigating the site. I gather from your post though that you are experienced in finding your way around such sites.
However, in case you need or want site-specific tips, you can check out the How to Guide.

Because you quoted SusanJ in your post, she will be notified and will likely reply. I believe there are a couple of other threads on this site that reference Dr. Goodenowe's work and you can find them by typing his name in the Search box below your username. Perhaps they would be of interest.

Again, welcome to the site and thank you for your contribution!

Warmly,
TheresaJ
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Gail
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Re: Prodrome blood test results, initial and over time

Post by Gail »

aedaed11 wrote: Fri Jul 15, 2022 7:39 pm
Gail wrote: Thu Jun 09, 2022 3:26 pm
SusanJ wrote: Wed Jun 08, 2022 9:41 pmuu





rs7946 T/T:

PEMT pathway is responsible for the body’s production of phosphatidylcholine, which is part of the phospholipid bilayer making up the membranes surrounding our cells. The PEMT enzyme is key in the body’s ability to create choline. Genetic variants that decrease the function of the enzyme cause greater reliance on choline from dietary sources.


rs10791957:
> - A/C: reduced turnover of methionine to phosphatidylcholine

Plus:

rs18J01133: >- A/G: one copy of **MTHFR C677T** allele, enzyme function decreased by 40%


Haven’t tested my father on prodrome (yet), but for me, I tested on the 2nd percentile for Total PhosphatidylCholine at age 32 and with a healthy diet. After 3 months of taking 10g a day of Sunflower lecithin I only went up of the 12th percentile. So I am taking now PC capsules in addition. Will test again soon and share my results.
Thank You for your email aedaed11! I looked very quickly and you are right! I have the PEMT RS 7946 T/T variant! I have been taking Biobody phosphatidylcholine since the beginning of June. Soon I will be switching to the the Now Sunflower Lecithin. I haven't retested. But all your information is very interesting to me.
I just saw this post and it is late at night. Tomorrow I am up early for an out of town trip for two days.
When I get back I will look further at my genetics report and see if I have the other variants you mentioned. I will also let you know what my percent phosphatidylcholine looked like on my Prodrome scan. I think it was 28% but not sure. Thanks for bringing this to my attention and I guess I need to be serious about eating my eggs and taking my choline supplements.
Interesting enough, I just recently saw a Dr.Gundry P.A. and she told me my TMAO production was too high. She said I needed to NOT take anything that had Choline in it. But I chose to ignore her, my heart is in great shape with a zero CAC score and my oxidized LDL is very low. I'm more worried about my brain and my Phoshatidylcholine levels!

Thanks,
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Re: Prodrome blood test results, initial and over time

Post by floramaria »

Notes on my second ProdromeScan: I’ve had to sit with these results for awhile because the results and the consultation were discouraging. I’m not sure what to make of it all, actually. If I felt myself to be unhealthy or in decline it might have been devastating. As it is, though, I am trying to reconcile a ProdromeScan consultation that made me sound like a total mess with the day to day reality which is that I am strong, active, energetic and physically and cognitively healthy.

Prior to the second Prodrome Scan, I’d been taking 1 ml of ProdromeNeuro and 1ml ProdromeGlia per day for 18 months based on Dr Goodenowe’s recommendations after my first ProdromeScan.
Justine, the Health Coach who did the consult, was knowledgeable, as far as I can tell, but I do not have the scientific background to evaluate her comments. We were hampered somewhat by the fact that she could not see my earlier ProdromeScan (PSK-0357). I’d hoped she would be a able to address the changes… for the worse…. between my first and second ProdromeScans. Even though I was able to tell her about the results on my previous ProdromeScan, she couldn’t look at the two side by side since my earlier results were not in their database.
(It would have been helpful if she’d let me know this before the consultation; I could have located the digital file containing the earlier ProdromeScan results and sent it to her before our meeting.)

Between the first and second blood draws:
~Line 2c DHA Ethanolamine Plasmalogen declined from 85th% to 60th% This is the line she said is most important for preventing AD
~Line 2d EPA Ethanolamine Plasmalogens declined from the 72nd % to the 31st%
~Peroxisomal function and mitochondrial function which were impaired in first test got worse.

According to my notes, Justine’s explanation for why my plasmalogen levels declined rather than improving was that at the time of my first test, my peroxisomes were stressed out and that was pushing them to make high levels of plasmalogens. She said I had probably not been taking “enough” of the ProdromeNeuro and ProdromeGlia to improve my plasmalogen levels, only enough to take the stress off the peroxisomes which then produced less plasmalogens. (Hmmm.) But my peroxisomes are even more stressed at the time of the second blood draw, according to the ProdromeScans. I didn’t notice this until after the consultation, so I wasn’t able to ask her to explain that apparent discrepancy.
He recommendation was for me to take 3 ml of ProdromeGlia per day and 2 ml of ProdromeNeuro. This would be 5 bottles/month! This was shocking to me, and even more shocking was when I asked, “Is this a loading dose that I will be able to decrease after a month?” “No,” she said, “this is for life.”
She recommended BodyBio PC in addition to the Prodrome products. She thought the pricey Urolithin A product MitoPure might be helpful for my “leaky mitochondria”. Many other supplements were recommended too.

Adding another $1000 a month to my already hefty supplement budget is not something I am able to do.

At this point, the ProdromeScans have raised a lot of questions for me. More questions than answers. Here are a few:
What is stressing my peroxisomes? How valid is this way of gauging peroxisomal function?
Is there anything I can do instead of taking additional supplements? Just how leaky are my mitochondria? How valid is this way of measuring mitochondrial function? How stable or volatile are different values in the ProdromeScan?

I’d probably need a PhD in biochemistry to be able to figure out the answers to these questions.
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Re: Prodrome blood test results, initial and over time

Post by Gail »

@floramaria

Thank you so much for the thorough recap of your second Prodrome Scan. You actually validated all my thoughts, and concerns, and especially doubts I had after having a Prodrome Scan consultation with Justine - the same health coach.
I, too, consider myself very healthy, proactive about my health. I have a good diet, I am very fit, and live a very healthy lifestyle in the Sierra Nevada Mountains. I regularly average 30 miles a week or more and about 5000 ft gain or more hiking over high Sierra passes at the altitude of around 9000 ft on a weekly basis. I train at the gym 3 times a week. My regular blood profiles are very good. I, too, am cognitively fit scoring a 93 percentile on average in BrainHQ. After meeting with Justine, I felt the same way you seem to feel Floramaria! She made feel like I was a mess,, I had fatty liver disease (I'm not overweight and I don't drink alcohol) , my mitochondrial function was horrible and no hope for my peroxisomal function at all! Another thing she was disdainful of my years of being a Vegan and also even though she was a Bredesen trained health coach at some point was very disdainful of the Bredesen diet. She warned me that I better start eating a lot more grass fed beef (more than my one serving a week - not enough!) or I'd never get better.
Then came the recommendations to get myself out of this mess. Three ml per day of Nuero and three ml per day of Glia. That alone would cost $1200 per month. She thought I should take the fatty acid supplements also - another $100 per month. Total $1300 per month. So I would be on every one of the supplements that Prodrome sells. She told me I should be on BodyBio PC also but was hesitant to recommend it because Dr. Goodenowe would soon be releasing his own phosphaditylcholine supplement and she really should be recommending Dr. Goodenowe's supplement.

I really have my doubts about this health coach qualifications (no medical training!! - no biochemistry training) to diagnose my supposed very sickly cellular health and then recommend a fix of $15,600 a year to get better!!

I did not feel good about this experience at all. I did not take her advice - but decided to take just 1 ml of Prodrome Nuero for $200 per month and the NOW PC supplement ($12 per month as opposed to BodyBios $78 per month) which JulieG recommended to me on the Bredesen site. I am questioning the good name of Prodrome Sciences!

I did some research on the internet and found that Dr. Goodenowe had a company in Saskatchewan at one point that he left under a bit of controversy - possibly the company was taken away from him due to accusations of mismanagement. I know this information could be faulty - as it has been unverified - and my only source of information is on the internet and I could be wrong. I would encourage anyone to do some research before they spend $15,600 on Prodrome supplements. I have read some of Dr. Goodenowe's research papers and they seem valid to me. I read his book "Breaking Alzheimers" and I felt it was inspirational and his scientific arguments were very convincing. But the Prodrome Scan and the recommendation of a high cost supplement regime needs a lot more justification than I have received so far. I have many doubts about Prodrome after my Scan and health consultation.

Another consideration I had was the fact - that when I take a supplement (usually either Jarrow or Life Extension) I check Consumer Labs for their quality ratings. Consumer Labs tells me as a third party tester that the supplement I am considering does indeed have the correct substance at the quantity listed on the ingredients label and is free of heavy metal contamination and impurities. As far as I know - and please correct me if I am wrong- there is no third party tester of Prodrome Supplements. We could be taking some snake oil!!! OR - we could be taking Plasmalogens. I personally don't know for sure. I feel this whole obsession with taking Plasmalogens and paying big $$$ for it is a bit of a risky proposition.

This is just my thought on the Prodrome supplements and experience so far. You may have a different experience and different feelings about it. I welcome hearing about it.

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Re: Prodrome blood test results, initial and over time

Post by floramaria »

Gail wrote: Wed Aug 10, 2022 6:29 pm I did not feel good about this experience at all. I did not take her advice - but decided to take just 1 ml of Prodrome Nuero for $200 per month and the NOW PC supplement ($12 per month as opposed to BodyBios $78 per month) which JulieG recommended to me on the Bredesen site. I am questioning the good name of Prodrome Science
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Hi Gail, I have a big post coming your way regarding TMAO and avoiding choline. You and I are definitely on parallel paths! It is great to find this commonality, both with the ProdromeScan consultations and the advise we both got from other independent sources about choline intake. We have a lot to discuss!
Because it will be a long post with various quotes in it, I am writing it only computer as a document. I'll cut and paste it in this thread, having learned my lesson about losing posts.

Meanwhile I just want to be sure that you are aware of the community discount code for ProdromeScience has offered for MOD4 participants. If you intend to continue to take Prodrome Products, you might want to get involved.

3. Prodrome is offering discounts on tests and supplements for MOD4 participants. You can begin participating in the project by ordering blood tests here and blood test/supplement bundles here. There is no formal sign-up for members wishing to participate in MOD4. Please forward the CSV file(s) of your blood test(s) that you receive from Prodrome to the MOD4 project email, mod4@apoe4.info. (The CSV file is best suited for direct database import.)

4. Anyone in our community is welcome to purchase blood tests and supplements from the Prodrome Store for a 25% discount with code APOE4GROUP25 at checkout.


Information about the MOD4 project in the post by Julie G at the top of this thread:

viewtopic.php?f=15&t=7874#p82739

More to follow.
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Re: Prodrome blood test results, initial and over time

Post by Tincup »

floramaria wrote: Wed Aug 10, 2022 10:09 pm I have a big post coming your way regarding TMAO and avoiding choline.
A recent Huberman Lab podcast where he mentioned a supplement taken with choline that keeps TMAO low. It is this one. TMAO may be offset with 600mg of garlic. A search on TMAO & garlic brought up this.

It is the section that starts at 1:37:29 and mentioned the garlic at about 1:44:00.
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Re: Prodrome blood test results, initial and over time

Post by Julie G »

Notes on my second ProdromeScan: I’ve had to sit with these results for awhile because the results and the consultation were discouraging...
Thank you so much for the thorough recap of your second Prodrome Scan. You actually validated all my thoughts, and concerns, and especially doubts I had after having a Prodrome Scan consultation...
Floramaria and Gail, thank you both for sharing your Prodrome scan journey. On a recent book club/support group Zoom meeting, I got to hear from Floramaria firsthand. I was pretty shocked, both at her results and the recommended "fix." I plan to reach out to Dr. Goodenowe to share your experiences and will share his response.
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Re: Prodrome blood test results, initial and over time

Post by Gail »

floramaria wrote: Wed Aug 10, 2022 10:09 pm
Gail wrote: Wed Aug 10, 2022 6:29 pm I did not feel good about this experience at all. I did not take her advice - but decided to take just 1 ml of Prodrome Nuero for $200 per month and the NOW PC supplement ($12 per month as opposed to BodyBios $78 per month) which JulieG recommended to me on the Bredesen site. I am questioning the good name of Prodrome Science
Gail 3/4
Hi Gail, I have a big post coming your way regarding TMAO and avoiding choline. You and I are definitely on parallel paths! It is great to find this commonality, both with the ProdromeScan consultations and the advise we both got from other independent sources about choline intake. We have a lot to discuss!
Because it will be a long post with various quotes in it, I am writing it only computer as a document. I'll cut and paste it in this thread, having learned my lesson about losing posts.

Meanwhile I just want to be sure that you are aware of the community discount code for ProdromeScience has offered for MOD4 participants. If you intend to continue to take Prodrome Products, you might want to get involved.

3. Prodrome is offering discounts on tests and supplements for MOD4 participants. You can begin participating in the project by ordering blood tests here and blood test/supplement bundles here. There is no formal sign-up for members wishing to participate in MOD4. Please forward the CSV file(s) of your blood test(s) that you receive from Prodrome to the MOD4 project email, mod4@apoe4.info. (The CSV file is best suited for direct database import.)

4. Anyone in our community is welcome to purchase blood tests and supplements from the Prodrome Store for a 25% discount with code APOE4GROUP25 at checkout.


Information about the MOD4 project in the post by Julie G at the top of this thread:

viewtopic.php?f=15&t=7874#p82739

More to follow.
floramaria
Thank you Floramaria!

Yes, we are having some of the same experiences! It sure is nice to have some companionship on the road we are traveling! Maybe we should share and compare our Prodrome Scan results off line. I can email you mine. We might learn something that way. In my report line 2C DHA-Ethanolamine Plasmalogen was 59% compared to your 60%. Line 2D EPA-Ethanolamine Plasmalogen was 26% compared to your 31%. I sure hope mine don't decline after supplementing. I think you made some valid points at the end of your post such as " How stable or volatile are different values in the ProdromeScan?"

Another point I would like to make is that Dr Goodenowe has studied plasmalogens in the people who are diseased. And I know he has done some studies on predicting disease. But I don't think there have been too many studies on this particular set of blood biomarkers that are in the Prodrome Scan and what they are truly predicting. And NO STUDIES on what happens when the Neuro or Glia plasmalogens are supplemented. How do the blood biomarkers in the Prodromescan change? As far as I know there are no studies on that. No peer reviewing at all. In fact his supplement has not been studied. So for me it is a hard pill to swallow that I need to pay thousands of dollars a year for this supplement.

Floramaria thank you for the tip on the 25% reduction. It will help with the 1 ml of Neuro that I have decided to take.

It was interesting to me though that my phosphatidylcholine
was measuring very low. Then I read the information on the PEMT gene that user aedaed11 was so kind to alert me to.
I do have the gene mutation of PEMT RS 7946 T/T variant. So my body has less of an ability to make phosphatidylcholine. I will listen to Tincups recommendation from the Huberman broadcast. But currently after a meeting with a very young and knowledagble Cardiologist and after a CAC score of 0 at age almost 70 – I am more worried about my body’s under sufficiency of phosphatidylcholine than I am worried about TMAO.
Tincup, is TMAO just another substance that is an irritant to the vascular endothelium like insulin or high glucose than can poke holes in the endothelium?

Floramaria -did you do that CAC test while you were in Calif?

Thanks to all users of APOE4 forum for all the great recommendations and everything I learn from you guys. Floramaria I am waiting eagerly for your report on TMAO and phosphatidylcholine supplements! Thanks for your help.
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Re: Prodrome blood test results, initial and over time

Post by Jlhughette »

Julie G wrote: Thu Aug 11, 2022 2:56 pm
Notes on my second ProdromeScan: I’ve had to sit with these results for awhile because the results and the consultation were discouraging...
Thank you so much for the thorough recap of your second Prodrome Scan. You actually validated all my thoughts, and concerns, and especially doubts I had after having a Prodrome Scan consultation...
Floramaria and Gail, thank you both for sharing your Prodrome scan journey. On a recent book club/support group Zoom meeting, I got to hear from Floramaria firsthand. I was pretty shocked, both at her results and the recommended "fix." I plan to reach out to Dr. Goodenowe to share your experiences and will share his response.
I’m sorry I wasn’t able to fix my computer problems to join in on Aug 6 to the book club support group on Zoom. I really was looking forward to hearing people’s updates, especially regarding Prodrome feedback. After 8 months of taking Prodrome Neuro I felt that I was going backwards a bit with my progress. I decided to stop taking some of my supplements one by one to try to track if something was off. I occasionally had word retrieval issues and felt stressed. The first supplement I stopped taking was Prodrome Neuro and I immediately felt like my old self. Relaxed, cognitively OK and physically energetic, which is the state I like to be in, as much as possible. I’m about to start taking the supplement again because I still have two bottles, and it’s likely nothing to do with my downturn. But if I start to feel “off” again, I’ll probably stop taking it. I do wonder if the Glial might be an option to try. It is interesting hearing Floramaria and Gail’s experiences.
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