Jim's Journey

[OfficeSpace]

Long time lurker, recent joiner, first time poster. I am both anxious about and fascinated by my / our condition, and this site is a tremendous resource. THANK YOU!

I'll kick off this thread with a baseline overview and current challenges.
Much of what I've been doing has been informed by the Primer, the Wiki, and other resources linked below.
Additional insight, suggestions, and encouragement would be most appreciated!


Background

• 52 year old male of European descent
• ApoE ε3/ε4 carrier (per 23andMe)
• Physically fit throughout childhood, team sports, etc.
• Graduated high school 5'9" ~135 lbs and very fit.
• Gained weight in college and maintained ~175 lbs during decades of sedentary office work.
• Drank soda like a fish. Diet otherwise reasonably healthy, at least relative to the S.A.D.

Dysphasia

• Diagnosed in 2013 as GERD and prescribed a proton pump inhibitor.
• Researched GERD and used elimination diet to identify gluten as a heartburn trigger and raw carrots as a compaction trigger.

Gout

• First attack in 2000, averaged one major episode per year.
• Diagnosed in 2015 and prescribed a xanthine oxidase inhibitor (to reduce uric acid synthesis).
• Liver objected in 2016, ultrasound indicated risk of NAFLD, prescribed a uricosuric (to increase uric acid excretion).
• Researched gout, learned about fructose-induced uric acid formation, and drastically reduced consumption of all carbohydrates (keto-ish).
• Rapidly shed ~30 lbs and reduced meds to maintenance dosage.

Kidney Stone

• Diagnosed in 2023, MRI indicated 5-6 mm calculus in the proximal right ureter just past the ureteropelvic junction, nephrologist recommended ureteroscopy and laser lithotrypsy.
• Researched alternatives to surgery, drastically reduced oxalates, increased hydration (to avoid supersaturation in the kidneys), increased calcium (to encourage oxalate binding in the intestines), increased citrates (to discourage oxalate binding in the kidneys).
• Passed 6mm stone within 3 weeks, 20% Calcium Oxalate Dihydrate (Weddellite) and 80% Calcium Oxalate Monohydrate (Whewellite).
• Rapidly shed ~15 lbs (keto-isher).

Family History

• Grandfather diagnosed with dementia in his 70s, probably Alzheimer's Disease.
• Father recently diagnosed with dementia in his 70s, possibly Alzheimer's Disease.

Physical

• Height: 5'10"
• Weight: <135 lbs
• BMI: ~19
• WHtR: ~.4
• BP <110/<70 @ <60 bpm
• Ketones: optimal for nutritional ketosis (1+)

Lipids

• optimal Triglycerides (57 MG/DL)
• optimal Glucose (62 MG/DL)
• high TOT (256 MG/DL)
• optimal HDL (84 MG/DL)
• high LDL (170 MG/DL)
• moderate ApoB (106 MG/DL)
• optimal LP(a) (<10 NMOL/L)
• optimal TDL / HDL ratio (3.0)
• good LDL / HDL ratio (2.0)
• optimal TG / HDL ratio (.7)

Dietary Goals:

• low carb (cerebral glucose hypometabolism & insulin resistance)
• low purine (gout)
• low saturated fat (MUFA and PUFA for keto)
• low lectins (microbiome)
• low oxalates (kidney stone)
• low sodium (kidney stone)
• high calcium (kidney stone)
• high citrates (kidney stone)
• high fiber (vegetables… gotta eat something!)
• high hydration (gout, kidney stone)

Typical Diet:

• eggs (onions, mushrooms, garlic, herbed goat cheese)
• salad (Romaine, Arugula, cucumber, radish, sardines, sprouts, feta, EVOO, ACV)
• chicken and salmon often, shellfish occasionally, beef or pork rarely
• asparagus, broccoli, cauliflower, bell peppers, onions, mushrooms, zucchini
• A2 kefir with seasonal fruit and, in moderation: sunflower seeds, pumpkin seeds, pecans, walnuts
• popcorn with olive oil & Old Bay
• hydration only water w/ lemon and decaffeinated tea & coffee
• fasting between 1900 - 0900 (all consumption within 10 hours daily)

Avoidances:

• no seed oils (minimize oxidization of LDL payloads)
• no almonds, no spinach (oxalates)
• no wheat (rare baked goods using gluten free flour, oat flour)
• no refined carbs (e.g.- zoodles for pasta)

Medications & Supplements:

• Probenecid (500mg morning) - Uricosuric for gout
• Fish oil (500mg morning, 500mg evening) - EPA & DHA omega-3s
• Pantethine (300mg morning) - B5 antioxidant
• Pantothenic Acid (500mg evening) - B5 CoA to metabolize proteins, carbs, fats
• E Annatto Tocotrienols (125mg evening) - E antioxidant
  NO STATINS (doctor prescribed 10mg Atorvastatin, which is lipophilic)
• uncomfortable with mechanism of HMG-CoA reductase inhibitors
• have no effect on myelination anyway (though cyclodextrin may!)

Physical Challenges:

• Feel very fit but underweight
• Cardio excellent but muscle mass lacking
• aerobic - 90%
• anaerobic - 10%

Appetite Challenges:

• Hungry most afternoons, even after meals.
• Caloric deficit?
• Nutritionally deficient?

[SusanJ]

Physical Challenges:
Feel very fit but underweight
Cardio excellent but muscle mass lacking
aerobic - 90%
anaerobic - 10%
Appetite Challenges:
Hungry most afternoons, even after meals.
Caloric deficit?
Nutritionally deficient?

I do a similar diet, the final piece going low oxalate almost 3 years ago. Previously I relied on nut to keep my calories up, so without that, I lost weight I didn't have to lose, including muscle mass. I was also hungry in the afternoon. I suspect I am also a hyper absorber (plan to test) so I watch my fat intake, especially saturated and even EVOO.

Have you tracked daily food in something like Cronometer? It can be eye opening, because too often we feel like we eat enough, but see that in reality we don't. You can also add a target weight, and it helps calculate the number of calories you need each day.

Don't know how low carb you are percentage wise, but I have switched my diet to include more carbs, including white rice and corn. You might consider loosening up the diet to include some additional carbs. Add a fruit smoothie (I use flax milk to keep saturated fat low, blueberries and whatever might be seasonal, some fiber to slow digestion) in the mid-afternoon or after working out (consider creatine or other muscle building supplements after lifting). Add some corn tortillas (medium oxalate) or a smear of pumpkin seed butter (low-med oxalate depending how much you use) on the baked goods. Include a side dish of Spanish rice (or other rice dish made with extra veggies/good stuff) etc.

Also make sure you're including enough protein, which will be necessary to regain muscle mass.

I've read papers saying that we can better utilize carbs in the morning, so maybe try adding carbs in the morning to start and see what happens. Another option is to start your feeding cycle earlier in the day. I've read other papers that say it works better for some folks. I also eat 3 times a day to get enough calories in each meal and not feel overstuffed trying to get it in 2 meals.

In my experience, extra low weight/low muscle mass is a hard place to recover from. And your diet is very restrictive compared to many on this site. At this point, my advice is just get some extra carb calories in there, see what happens to the insulin/blood sugar numbers and don't let the perfect diet be the enemy of the good.

Good luck!

[OfficeSpace]

Thank you very much for your thoughtful and insightful reply. Prior to the kidney stone diagnosis earlier this year, almonds had been my go-to snack; I consumed 2+ lbs per week, plus spinach among other high-oxalate "healthy" foods, plus woefully insufficient hydration, which equaled unanticipated trouble! I should have known better (too much of a "good thing"), but it's what made my initial keto-ish diet tolerable. Additional dietary restrictions (and increased exercise) since then netted another 15 lbs of weight loss that I want to recover as muscle. Increasing calories (and anaerobic exercise) makes sense, through doing so with carbs (admittedly consistent with these recommendations) would require a shift in perspective (vs. just eating more of my current diet) and potentially raise concern about oxidized LDL (advanced glycation end products; my recent HbA1c score was 5.1%). I have not tracked dietary intake but will explore use of something like Cronometer to establish a baseline for tracking such changes. Thanks again! Very helpful.

Update: I took a stab at logging this rainy (relatively inactive) day which produced the following output (my daughter baked a pie, which supplied the additional carbs you recommended ). Super useful! I appreciate the suggestion and feel motivated to continue tracking.

[SusanJ]

Increasing calories (and anaerobic exercise) makes sense, through doing so with carbs (admittedly consistent with these recommendations) would require a shift in perspective (vs. just eating more of my current diet) and potentially raise concern about oxidized LDL (advanced glycation end products; my recent HbA1c score was 5.1%).

Glad that Cronometer was useful for you.

Increasing carbs is always tricky. Pie, although yummy, probably isn't your best option. I added lower oxalate, higher carb vegetables (like winter squash, corn, peas) but eventually added some rice options to push me high enough. As you know, many favored carbs in the keto world, like sweet potatoes, cassava, etc, are are no-nos for those watching oxalates.

You have a low A1c to work with, so you have room to experiment. If your oxLDL is low, again, you might have some wiggle room.

Also, your protein looks low for the purposes of rebuilding muscle. Maybe see how you can boost that a bit more.

Good luck tracking and tweaking your food.

[OfficeSpace]

Thanks again!

I have logged diet and exercise in Cronometer religiously for three straight weeks. Edit 5 Nov 23: now three straight months! Tagging frequent foods, adding custom recipes, and modifying copies of ingredients to include such aspects as oxalate content has made it easy and even fun. This endeavor has been most revealing and particularly helpful for optimizing meals.

Depicted below is its summary of the past one week of consumption (longer periods require a subscription, which I am considering). Edit 5 Nov 23: I inadvertently replaced the original charts from August with new charts produced the week prior to lab work in November - sorry for any confusion! Striving to adhere to the dietary recommendations of Precision Nutrition for Alzheimer’s Prevention in ApoE4 Carriers and the percentages recommended for E3/E4 in Table 3 of High cholesterol and the APOE gene, I used the Keto Calculator to adjust the macronutrient targets for "Relaxed" with "Athletic Bonus." I have begun resistance training and see increased muscle tone but zero change in weight, presumably due to the average calorie deficit, which I am still struggling to address, though protein has increased! Edit 5 Nov 2023: The 372 calorie average deficit shown below includes the daily surplus added by Cronometer to help achieve the target weight I specified.







It also charts consumption by day, and for all three weeks; perhaps with a subscription it would include exercise, which would add perspective for ~2000 calorie days vs. ~2500 calorie days (I am into mountain biking and increase consumption on days when I ride; the integration with Strava is sweet!).



Meanwhile:

• Encouraging:
  Myths about Alzheimer’s – from amyloid drugs to genes
  "at least half (50%) of risk is attributed to things you can change. So your diet and lifestyle is much more important than genes"
• Discouraging:
  Effects of apolipoprotein E on nutritional metabolism in dementia
  "E4 seems to exacerbate the cognitively deleterious effects of a high-fat diet"
• Potentially relevant:
  Case Report: Hypercholesterolemia “Lean Mass Hyper-Responder” Phenotype
  "Emerging evidence suggests that “leanness” and good metabolic health markers may predict larger increases in LDL cholesterol (LDL-C) in response to carbohydrate restriction."
  The Lipid Energy Model: Reimagining Lipoprotein Function in the Context of Carbohydrate-Restricted Diets
  "When lean people adopt carbohydrate-restricted diets (CRDs), they may develop a lipid profile consisting of elevated LDL-cholesterol (LDL-C) and HDL-cholesterol (HDL-C) with low triglycerides (TGs)."

[mike]

Physical Challenges:

• Feel very fit but underweight
• Cardio excellent but muscle mass lacking
• aerobic - 90%
• anaerobic - 10%

Welcome! How much and what type of exercise are you doing?

[OfficeSpace]

Thank you! I mountain bike hard for an hour most days, hike regularly (and/or walk at least 12,500 steps per day), and now bench, squat, curl, etc.

[mike]

Thank you! I mountain bike hard for an hour most days, hike regularly (and/or walk at least 12,500 steps per day), and now bench, squat, curl, etc.

That should be more than plenty and a good mix. How much did you weigh when you graduated high school?

Also a hint for this site - use the double quotes upper right to reply to someone and cause a notice to be sent to them. You can then edit out part of the copied post if you want as long as you keep the beginning and end [...].

[OfficeSpace]

That should be more than plenty and a good mix. How much did you weigh when you graduated high school?

Great! I'm starting to see and feel improvement.
I graduated high school 5'9" ~135 lbs and very fit.
34 years later, I am 5'10" ~135 and fit but lean.

[mike]

I graduated high school 5'9" ~135 lbs and very fit.
34 years later, I am 5'10" ~135 and fit but lean.

Same weight and same build, it sounds like, but now you say it is too lean? To bulk up a bit, you could do more weight lifting and a bit less cardio. Maybe 80/20 instead of 90/10? Add more protein to support this.