SusanJ's intro

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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SusanJ
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SusanJ's intro

Post by SusanJ »

About time to add my story to the list.

Family History

My father had LOAD Alzheimer's. In retrospect, probably not diagnosed for at least 2 years. He was good at hiding his slips, but when my mom died in 2008, it was obvious how much she helped him get through his days. He had psychosis in his last months, and that was when we had to move him to nursing home care. He died of pneumonia in 2009, which from what I've read, is common for AD patients. Do not know his APOE status.

[Added: I should probably mention that my dad smoked until his mid-50's, had periodontal disease and was overweight. When he quite farming, he gained a lot of weight and didn't do the same kind of physical activity. Had a heart attack in his mid-60's, and bypass in his early 70's. He was diagnosed with type 2 diabetes in his early 70's and rheumatoid arthritis in his mid-70's. It is my motivation to not go down that same path...]

My father's aunt was in a nursing home with dementia when she was in her 80's for 10 years . Lest I point the finger at my father's side of the family for my status, my mother's half-sister had EOAD, and spent at least 15 years in the memory care unit. Don't know their APOE status either.

My History

I lived and ate my way through a pretty typical life for my first 50 years - SAD, stress from work, but at least I was pretty good about the exercise part. In 1999, I gave up dairy because of digestive problems. Around 2005 I switched to a vegan diet because my hubby had been diagnosed with blockages through a heart scan - his doctor of course recommended no red meat and low fat. My heart scan was clear (at age 50). Then the GI problems started, which I assumed were just what happened when you got older - did not connect it to the vegan diet.

In 2009 I was diagnosed with rheumatoid arthritis. About the time of menopause, after losing my mom and many other stressors in my life. A friend with RA suggested stop eating gluten. I did, and not only did my joints feel better, my GI track starting getting better. I also gave up legumes, and all grains except for some rice and saw additional improvements with my gut.

I moved to a new town in 2011 when my hubs retired, and in early 2012 found a new functional medicine doctor. With his help, I continued to improve my gut health. He suggested I do genetic testing to see if there were treatable variants - he suspected MTHFR at the time. I got my results back, and yes I was homozygous for C677T. I also found I had the variants common to RA, and I was APOE 3/4. As with everyone, it was a shock, even though the family history is there.

I currently eat a moderate fat Paleo diet. I do eat more starches than most Paleo folks - I do eat potatoes and other root veggies, along with starches (tapioca, arrowroot, potato) in nut-flour baked goods. Grass fed beef, free range chicken and eggs, fish, and lots of veggies. I do eat a serving or two of fruit, mostly berries, most days.

I take curcumin (BCM-95 and Longvida), 1 G fish oil (nordic naturals ultra-omega), 20 mg zinc glycinate for RA symptoms, Xymogen Methyl Protect for MTHFR, 5000 IU D3 (initially low, then too high, will be testing again in the spring), 90 mcg MMK (K2), 1000 mg calcium citrate, 400 mg magnesium, a multivitamin, and a lutein/zeaxanthin supplement because I am risk for macular degeneration. I also use probiotics and take a digestive enzyme with each meal.

I've stabilized my weight. I lost about 25 pounds - down to 110 - when I first went paleo-ish. With a healthier gut, I now weigh around 120 at 5'6", so around BMI of 19.4. I walk my dogs daily for about 40 minutes and switch between additional speed walking, hiking in the mountains, elliptical, weights and yoga for additional exercise. Some days my RA will flare, and walking the dogs is about it.

Forgot to add I am on bioidentical hormones (est and progest) and DHEA compounded in a cream. Amounts based on my lab tests.

My RA is under control without drugs. I just had xrays of hands and feet, and still no damage to the joints. I still wake up with the usual stiffness, but most days it improves as the day goes on.

I'm 58. This year I decided to retire from work completely. I can afford it, and I'd rather be pursuing some of that bucket list than sitting in meetings, even if discussing interesting problems (I LOVE solving problems, my blessing and curse). So, I have time for more music (piano, bass), and art (collage, watercolors, photography). Still love learning, reading, and spend way too much time looking at health research (I was in pharmacy school for 3.5 years before switching to computer science). I volunteer at the local history museum, and with a local arts organization.

I meditate daily, and following the Buddhist tradition, I have benefited from understanding how my attachment to outcomes (e.g. push away what I don't like, holding too close what I do like, refusing to see reality) create unnecessary burden in my life.

The only moment I have is now, and I try to choose to live in that moment as fully as I can.

And like everyone, I have good days and bad.
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Re: SusanJ's intro

Post by bentkat »

Susan,

It's a privilege to read your intro. What a well-rounded, interesting person you are.

I'm curious as to why you gave up a vegan diet when you gave up grains.
I have not had any negative effects on a vegan diet, but then I might well be one of the few who thrives on any diet.

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Re: SusanJ's intro

Post by Julie G »

Hey Susan, I agree with Bentcat. It is an honor you get to know you better.

How difficult that must have been to lose of your parents so close together. And, how sad to see your Dad decline so quickly without your Mom.

It sounds like you have an amazing local doctor; how blessed you are! Have you ever explored the mast cell activation (MCA) aspect of RA? Seems like many here experience various faces of MCA...and it appears to overlap with AD. I need to start a separate thread about that.

It's interesting to hear your dietary journey. From MarkES's posting you've got an amazing NMR; something is working for you :D Kudos. Out of curiosity, is your husband still vegan/low fat or has he also switched to a more Paleo diet?

I'd love a nut flour recipe. I only tried to make almond flour pancakes once and I felt as though I'd swallowed a 10lbs weight. Bleh. There are days I'd kill for a muffin...
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Re: SusanJ's intro

Post by SusanJ »

Thanks for your kind words, and always much appreciated on this journey!

BentKat, without legumes (which I loved - black beans, garbanzos, pintos!!!), I found I couldn't get enough protein and was constantly hungry, and kept losing weight (my friends were worried I looked so thin). At 110, I couldn't afford to keep losing weight. When I added meat back in, I had energy, could work out and gain some weight back. My GI track is definitely much happier. I still have GF, legume-free vegan meals during the week, I just can't do it for every meal.

Julie, the hubs will eat some poultry and fish with me and will eat dairy (yogurt, cheese), but he draws the line at red meat. We have an agreement that he has to make his own breakfast and lunch, so he still eats grains (he loves pasta), but has been cutting back some. He is APOE3/3, and has other issues to tackle.

I have not looked at MCA in any detail. Probably makes sense to look at it more.

And for baked goods, here are two of my favorite sites.

Elana's Pantry: Almond muffin at http://www.elanaspantry.com/ratio-rally-quick-breads/
This is easy to modify by adding berries, carrots, whatever, and she has lots of recipes for other baked goods on her site, but the older recipes are not paleo. I also have both of her general cookbooks. She is the queen of almond flour, and has one cookbook that is all cupcakes.

Against All Grain: these macadamia waffles will rock your world http://www.againstallgrain.com/2013/02/ ... uit-syrup/
Her cookbook is gorgeous - like food porn but its all stuff you can eat! She has a nut cheese recipe that I am eternally grateful for.

Maybe I should start a new thread on food sites... ;)
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Re: SusanJ's intro

Post by SusanJ »

I see that I made this intro a long time ago, in a galaxy far, far away. About time for an update, so instead of slapping my latest labs in a new thread, I thought I'd start documenting my progress here.

Like many here, I've tested and tweaked and tested and tweaked more times than I can count. I felt pretty stable by 2017, but still bothered by pesky histamine problems that would flare from time-to-time. One time in 2016, I had a bad reaction on my birthday, and I told my husband to watch for certain symptoms, but if I passed out, please call 911. :shock:

2017 continued to be up and down, and I was having trouble controlling my homocysteine and A1c, in spite of supplements and watching my diet.

Then, I read "Dirty Genes" by Ben Lynch when it came out earlier this year. What an eye opener, even for an old hand, "methylation whisperer" like me. Back to the books for me to understand some of things he wrote about.

I've been following his recommendations from the book for 11 weeks now. At the end of week 7, I did an NMR that I had ordered earlier in the year through Life Extension (it had been a while), along with an oxLDL (never done that) and other IR and inflammatory testing.

Here's the results. First number is from this month:

Total Cholesterol
220
204 (2017, different labs)

LDL-P
1150
1112 (2015, different labs)

HDL-C
79
77 (2017, different labs)

Triglycerides
90
63 (2017, different labs)

LDL Size
21.5 (pattern A)

Fasting Insulin
3.9
3.6 (2016, different labs)

A1c
5.5
5.6 (2017, different labs)

LP-IR score
<25 (low)

Myeloperoxidase
224 (low risk, no comparison)

OxLDL
41 (low risk, no comparison)

CRP
<0.15
<0.2 (2017, different labs)

Homocysteine
6.9
7 (2017, different labs)


Yep, triglycerides are higher than I want and fasting insulin crept up, I think because I was doing more vegetarian meals, so will be messing with my carb and protein ratios. But, A1c is creeping down from a high of 5.7 in 2016 - finally! Overall I was very pleased with the overall cardio markers and LP-IR.

Here's the interesting thing.

In 2016, I had dropped folate and B12 after lab tests show blood levels on the high side, but my homocysteine soared to 10.4, so I resumed higher doses. I was taking 800 mcg folate, 1000 mcg B12 and 1 gram of TMG per day, and my 2017 homocysteine was back down to 7. But, I was suffering folate side effects.

After reading Lynch's book, and Chris Masterjohn's methylation series, I changed my approach.

I now supplement 400 mg phosphatidylcholine and 2-3 grams of creatine per day. They help spare methyl groups because they are in already in their ready-to-go forms, so no methyl groups needed in the conversion, leaving more methyl groups for things like recycling homocysteine. I also dropped to 400 mcg folate, 500 mcg B12 and 1 gram of TMG per day. B6 is the same at 38 mg/day. Folate side effects waned and here I am at 6.9 on the homocysteine scale. Lower folate and B12 and still a good result. Really happy with that.

I wanted to share my homocysteine adventures for any members who are still struggling to get their homocysteine levels down. Now in reality, I am also in the middle of additional gut healing, so my numbers might be also be confounded by that - I found I had a dirty PEMT gene, which ensures cell wall integrity, but also effects things like your bile flow, and puts you at risk for gut problems like SIBO.

I think working on PEMT problem and my gut also also helped in the histamine area. Cell wall integrity can impact whether cells are trigger happy with histamine release, and of course, cleaning up my microbiome means my immune response to foods in the gut is starting to be more normal. With histamine dropping and more methyl groups, I found brain effects going down like busy brain, and I rarely wake up in the middle of the night anymore.

So, I highly recommend "Dirty Genes" for anyone who feels a bit stuck in their health journey. It does not require to you know your snps from 23andme, because his argument is that genes can be dirty (or not behave) because of genetics or environmental/lifestyle reasons. He goes off lists of symptoms. The eye opener for me was seeing gallbladder problems in the lists, which both my parents had (stones and gall bladder removal), so it was a clear sign for me to dig into PEMT. The book also tied a lot of my genetics together in a way I hadn't seen in the past - how one gene affects another and soon a trio is causing a host of seemingly unrelated issues. In fact, he recommends a certain order of treatment, and interestingly, MTHFR is one of the last to treat.

Long post, but my hope is this helps someone . Now I'm off to do more tweaking and testing, but generally feeling ding-dang good about my recent progress.
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Re: SusanJ's intro

Post by slacker »

Great update Susan, and good to hear from you as always.

Would you be willing to add a short homocysteine reducing update to your wiki? It's always helpful to point members to one place for information. :) (I know you're super busy)
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Re: SusanJ's intro

Post by Lucy5 »

Lots to think about here Susan..thx so much for sharing. Really good to hear your results show such progress. A lesson for some of us (meaning me!), that tenacity and a willingness to do those deep dives into data just may reward one with nice results!

There are so many moving parts when it comes to bio-hacking homocysteine, it can be mindnumbing. As someone homozygous for MTHFR and more, my best lab by far was a lovely 6.9 way back in 2012 when I'd never even heard of MTHFR (or homocysteine to be honest :?) and so wasn't supplementing with any of the methyl B's, not to mention indulging in a diet that would be shocking here. 6 years later (following most of the recommended protocols), my hcy is in th 9-10 range. So clearly for some of us, there's more to the story. A very interesting theory that perhaps MTHFR is the last to treat....Dirty Genes just made it's way to the top of my reading list!
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Re: SusanJ's intro

Post by SusanJ »

Slacker, I already put information in the wiki a couple weeks back about how choline and creatine are helpful in hacking homocysteine.

Lucy, I was the same way. Following these protocols didn't work as well for me as others, and then there were the folate side effects. I was surprised to see I needed to treat some other things that were interfering with a properly functioning methylation cycle. I always put MTHFR first in priority - just take the B vitamin/TMG stack and that's it. But, it makes sense when you read his reasons why (and he gives his references). And it helped seal the deal when Masterjohn came out with the same choline and creatine recommendation just about the same time. Do let me know what you think once you've read the book.
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Re: SusanJ's intro

Post by Jafa »

Hi Susan, I’m so happy to hear you are making progress in the methylation journey. It’s really great that you’ve managed to reduce your homocysteine without having to suffer the folate brain buzz. Thanks for sharing your experience of following the Lynch and Masterjohn recommendations for using choline and creatine to spare the methylation load. As you know I’ve been experimenting with something similar as my homocysteine was stuck in the 9-11 range.

I’m so glad you posted today. I checked my phosphatidylcholine dose against your 400mg and went back to Masterjohn’s transcript. While I thought I’d been conservative taking a little over 1 scoop of lecithin powder (he recommends up to 4 scoops depending on other choline containing foods in the diet), I had the wrong product. Four scoops of his recommended Microingredients brand contains 1600mg of phosphatidylcholine, 1.3 scoops of my Now Sunflower Lecithin contains a whopping 2500mg. :oops: I’ve been taking that dose for a couple of months now, and have reduced my folate to 400ug, B12 to 500ug, P5P to 25mg and am not taking any TMG. My sleep which is usually not great has become terrible and I was hoping that reducing the B’s might have helped. Not so far. Wonder what the side effects of too much choline are?

Am going to test my bloods tomorrow.
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Re: SusanJ's intro

Post by TheBrain »

Susan, it was helpful and interesting to read your original story and your recent update. You provide an excellent example of the benefits of tweaking and deep diving to improve health.

I am sorry to hear the details of your father’s decline with AD and his health issues that contributed to it. It sounds like he relied heavily on your mother up until she died.

You are reminding me again to read Dirty Genes, but I suspect I should first make more progress with overcoming CIRS and then see what’s left.
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
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