Wading in slowly

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
BSchmaltzy
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Wading in slowly

Postby BSchmaltzy » Sat Apr 21, 2018 10:41 pm

Hello, all. I have been comforted to find this site and dipping in here and there. Stavia, thank you for the primer, and everyone, thank you for all your contributions. Your knowledge is awe-inspiring. And intimidating.
I am APOE 4/4.
My journey started almost two years ago with my doctor telling me to "get your triglycerides down." I was not technically overweight, but I was getting close, and not happy with myself. I did get the triglycerides down, and my cholesterol too-- I am no longer taking any medication for that, and I am no longer pre-diabetic. In searching for low carb recipes, I found the Paleo folks, and then stumbled on Dr. Gundry (loved his advice, have a year's supply of some of his supplements, blocked his marketing department). I enjoy the new way I am eating--though I can tell y'all are going to mess with that--and have lost 20 lbs in the course of a 18 months (did I mention I am wading in slowly?) and now have a BMI of around 22-point-something, but yes, still too big a waist--but does having lost 2 inches in height from degenerative disc disease affect that? I have difficulty finding my waist these days. And it used to rival Scarlett O'Hara's, back in the day. Sigh.
Reading that inflammation could be conquered gave me new motivation. I once listed my chronic "-itis" diagnoses for my own amusement and came up with ten or twelve, so inflammation is a problem. Because I had a special trip coming up and was worried about sleeping in hard beds, I got much more serious about the diet as I understood it, and devoured The Plant Paradox when it came out. I am now off all the pain medication I was taking, except for one acetaminophen maybe once every two or three weeks. I still have some chronic pain. I have recently started taking a Meriva (curcumin) supplement. I do want to find a way to get rid of the rest of this irritating inflammation. The only way I know it's better is that I am no longer taking prescription pain meds almost every night. I do take B12 and D3, a multiple vitamin, and Krill Oil, as well as estradiol. When insomnia strikes, as it has lately, I take Melatonin. I gave up Benedryl (diphenhydramine ) every night. I would prefer a glass of A2 milk, which would work as well, but I have sadly given that up as well.
A few months ago, I had the genetic tests done from 23 and Me, and interpreted by Self-Decode. I was discouraged to learn my APOE status, but not entirely surprised. My mother died from congestive heart failure but with dementia, which I was convinced from my studies (I was a high school teacher-then-guidance counselor) was Alzheimers. I pre-ordered Dr. Breseden's book and have read it and continue to try to digest it. I do have questions--none of the many octogenarians on my Dad's side had memory issues, except my grandfather at 85, and he had had a series of TIA's--did one of those 4's have to come from my father? Is it the same for alleles as for genes? And does my 4/4 mean each of my children has at least one copy of APOE4? There may be a thread on this somewhere. I need to know more before I decide whether to share my status with my children. They just think I am a nice nut on a strange diet.
I heard somewhere, probably on a podcast, a doctor say that he didn't care what doctor's diet you followed, but to follow only one. That struck me as good advice, so I have put Dr. Gundry's book aside for now and am trying to follow Dr. Bredesen. I am not very disciplined but was already following most of the diet and loving it. I don't mind fasting for 12-14 hours, almost every day. I do sometimes cheat, primarily when foods I used to love find their way into my house (with my husband's help, bless his heart) or I am a guest. I endeavor to be a guest as often as possible--I remind myself that in Old Testament times, fasts were prescribed, but so were feasts. I am not exercising as much as I should, but some, and generally know what to do, and just need to find consistency. It must be lying around somewhere! I was an enthusiastic if not particularly talented athlete when young and love being active and outdoors. We live out in the woods, ya'll, and gyms aren't easily accessible, thank goodness, but hills are. And in all seriousness, I do continue to get better at this lifestyle. I'm wading deeper into the water. Or climbing higher up the hill!
For me, the wealth of information is confusing, and I do better to tackle it in chunks. I have always tested well and been considered quite bright, always loved to learn, but at the same time was always, always teased by my friends and family for being absent-minded, (they had other words for it) so it's a bit hard to sort out how much of the memory issues I am noticing might be early signs of disease. I am occasionally alarmed by some weird thing I do, but no one else who knows me notices. I am almost 71, so I think maybe I've avoided the early onset form. I did volunteer for an Alzheimer's trial two years ago, and made it through all the initial testing, and was told I did not show signs of memory loss beyond what was expected for my age. They rejected me, only because I had had a melanoma (in situ) removed. Even so, when I opened the wrong cabinet door looking for a glass, in the house I've lived in for 12 years, I was startled.
I hope I convince my internist to order and monitor the blood work. He is at this point skeptical of any program not supported by rigorous, clinical, non-anecdotal research. I have given him a copy of Dr. Bredesen's book, but last time I was in he had not yet read it, and may not. He's an amazing physician and brilliant, and he loves to keep up with research, but he's also busy and suspicious of any program which sells books. If he is not willing to work with me, I will have to find a health coach or some practitioner who will help, and in my area of the United States (the South, can you tell?), it appears that will be difficult. I don't know if I can sort through and monitor blood test results on my own, even though I did read I can find a lab and private pay.
I have a question that is pressing, if you are still reading? I have been having some seemingly-unrelated health issues for the last several months, mostly GI. An attack of what was probably diverticulitis, which was acute and awful (I couldn't sleep and I couldn't move, so I passed the night trying to decide if it was better or worse than childbirth) but went away after a few hours. There were other random uncomfortable episodes, for weeks before and after. Mild pain here and there, chest and abdomen, but none on the right side. My internist ordered various tests and has determined my gall bladder is poorly functioning (ejection fraction 30, if I have the term correct). No gallstones showed up. No pain in the region of my gallbladder. I've seen a surgeon, who looked me up and down (endoscope and colonoscopy), found mild gastritis but nothing more to worry about, and has me on a PPI. His initial stance is that removing my gall bladder probably won't make me feel better. Two years ago, I had a nissen fundoplication after 12 years of 120 mg a day of PPI's, supported by way too many 24 hour pH studies, was doing well, and am not happy about going back on a PPI. I am to meet with the surgeon again next week, and might be able to push for surgery. My question is, does anyone know if gall bladder disease, if that's what it is, could be causing any other the other inflammation issues I have, or conversely could be caused by general inflammation? Would it potentially help my chances with the APOE4/4 if I talk him into removing it? Which would mean anesthesia for the fifth time in three years, another concern. Except for the fundoplication, minor things, light anesthesia. But still. Or is 30% gall bladder function better than no function? And do gall bladders ever get better? My thyroid function is not in the optimal range. Would thyroid supplementation potentially help gall bladder function? My internist has not been open to prescribing thyroid while I test in the normal range, even though it is low normal. I took 1 gram of natural thyroid for 20+ years, initially prescribed by an endocrinologist for infertility, and never discontinued until I read it might cause my bones to thin out, and took myself off of it. I have to admit I didn't notice a difference at the time.
Thank you for reading this far. I've tried to condense the last two years, but goodness, I was an English teacher. I write! That's how I handle stress. Any thoughts will be much appreciated.

NF52
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Re: Wading in slowly

Postby NF52 » Sun Apr 22, 2018 6:52 am

BSchmaltzy wrote: I do have questions...did one of those 4's have to come from my father? Is it the same for alleles as for genes? And does my 4/4 mean each of my children has at least one copy of APOE4? There may be a thread on this somewhere. I need to know more before I decide whether to share my status with my children. They just think I am a nice nut on a strange diet.
I am almost 71, so I think maybe I've avoided the early onset form. I did volunteer for an Alzheimer's trial two years ago, and made it through all the initial testing, and was told I did not show signs of memory loss beyond what was expected for my age. They rejected me, only because I had had a melanoma (in situ) removed. Even so, when I opened the wrong cabinet door looking for a glass, in the house I've lived in for 12 years, I was startled.
I hope I convince my internist to order and monitor the blood work... He's an amazing physician and brilliant, and he loves to keep up with research, but he's also busy and suspicious of any program which sells books. If he is not willing to work with me, I will have to find a health coach or some practitioner who will help, and in my area of the United States (the South, can you tell?), it appears that will be difficult. I don't know if I can sort through and monitor blood test results on my own, even though I did read I can find a lab and private pay.
I have a question that is pressing,... My question is does anyone know if gall bladder disease, if that's what it is, could be causing any other the other inflammation issues I have, or conversely could be caused by general inflammation? Would it potentially help my chances with the APOE4/4 if I talk him into removing it?


A warm welcome from your 66 year old 4/4 "sister" in Virginia, who used to be a Northerner, so I can't use "y'all" with authenticity. But as a former English teacher turned special educator, I do love Faulkner and others who know that words are often our best tool to try to explain the "webs spun long before we were born, webs of heredity and environment". I'll try to answer the questions I can, explain when I can't and above all let you know that you are welcome to browse, to question, to write and to offer your ideas as much as you want to here. Like all extended families, we form a vibrant, sometimes messy and slightly disputatious bunch that likes to spend more time on the "unknown unknowns" than on "conventional wisdom".
About those alleles: Here's a quote from a handy source called "Sctitable" designed for HS and undergrad college students--just the thing for us former educators!
An allele is a variant form of a gene...Humans are called diploid organisms because they have two alleles at each genetic locus, with one allele inherited from each parent.
https://www.nature.com/scitable/definition/allele-48
So yes, you did inherit an Apoe 4 allele from each parent, which increases the risk of LOAD (Late-Onset Alzheimer's Disease) after age 65. You have for sure avoided the early onset form of dementia, which the folks at that clinical trial confirmed in your screening 2 years ago of normal cognitive health. (I am in the Generation trial and know that most cancers other than basal cell carcinoma, which I have had, will trigger an exclusion.) Your dad's TIA's were likely a form of vascular disease, which is also a risk with ApoE 4. Some people on this site have no family history of dementia, but lots of history of early strokes, heart attacks and coronary artery disease. Your lack of heart disease suggests you're doing a great job of controlling your risks in that area.
As for looking in the wrong cabinet for a glass, we are entitled to momentary lapses in attention! Even your kids have some "where did I leave my car keys?" moments, I would guess.
Here is a quote and link to a peer-reviewed article that might help you on those nights when you lie awake wondering about those memory blips. (English teachers like to read as well as write) The first is from a population-based study, which is useful because it doesn't have the same "bias" as people who are studied after they are diagnoses with AD, or people who refer themselves to a clinical study.
For APOE4 carriers with high lifetime intellectual enrichment (75th percentile of education/occupation score and midlife to late-life cognitive activity), the onset of cognitive impairment was approximately 8.7 years later compared with low lifetime intellectual enrichment (25th percentile of education/occupation score and mid/late-life cognitive activity).

https://www.ncbi.nlm.nih.gov/pubmed/25054282

A thought on your "amazing, brilliant" doctor, whom you seem to trust and have worked with well. You may want to check out this thread Can I practice the Bredesen protocol without a trained practitioner?
My own decision was to stay with the doctor whom I trust, and who is willing to have long discussions with me when I freak out on the results of a new test I have ordered from Life Extension.

You can access wonderful health coaches on this site who can support your goals and help you think through options: An Opportunity to work with health coaches

As for telling your children, we have a variety of beliefs on that, represented well in this thread:
Thoughts on Disclosure

I am not a doctor (and don't play one on TV) but I do have a husband whose gall bladder was removed 8 years ago and described as "almost gangrenous" and "the ugliest thing I've ever seen" by a delightful resident. He had no gall stones, but did have a history of GERD. I haven't heard of gall bladders getting better, but since your pain wasn't on the right side and your surgeon and PCP seem doubtful about the surgery, I don't think you have to decide in the next week. My husband is a 3/3 and although that same young resident said "He's not the gallbladder type. You (looking at an overweight woman in her 50's), you're the gallbladder type." For the first (and hopefully only) time in my life, I found myself saying "MY gallbladder is just fine!"

I do, however, have diverticulosis and have had diverticulitis, and can agree that the pain is something to behold.It also seemed to be all over my stomach and abdomen and my doctor wisely noted "Pain can be referred to lots of places beyond the source." Your GI doc that did the colonoscopy should have been able to confirm that you have diverticulosis through the scope. I have found that I flirt with a recurrence in periods of stress and/or too many seeds/nuts, and that a few days of clear liquids and low fiber foods calms things down again.

So please continue to BSchmaltzy on this site, and enjoy living life in the hills of the South, which are now probably covered with the green of spring leaves, flowering magnolias, dogwoods and azaleas.
4/4 and still an optimist!

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KellyS
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Re: Wading in slowly

Postby KellyS » Sun Apr 22, 2018 8:51 am

Welcome, BSchmaltzy, I am a lover of words, so I enjoy reading a long, detailed write-up, especially when it is typed up by someone with such a flair for the language! It looks as if you have already been introduced to Stavia's amazing primer, it is such an excellent source of information, isn't it? It also seems as if NF52 has been able to answer your questions (what an amazing resource, right?) so I hope that can help you get started on figuring some things out. There are so many amazingly knowledgeable people in this forum, you will love it here.
I have to say that I am not from "THE SOUTH," but I live in southern Illinois, which, truthfully, might as well become part of Kentucky. We are nothing like the rest of the state! Once you dip below the center, it's a whole 'nother world! We finally have some blossoms here, and are impatiently awaiting our gorgeous hummingbirds.

Warmly,
Kelly
Holistic Healthcare Practitioner
Functional Medicine Health Coach - Candidate
apoe4.info intern

BSchmaltzy
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Re: Wading in slowly

Postby BSchmaltzy » Sun Apr 22, 2018 4:33 pm

NF52 and KellyS, thank you for your responses. NF52, I will definitely start with the resources you gave, and am grateful--also grateful to find another English teacher and like you KellyS, lover of words. As well as two other Southerners--I am almost from upstate South Carolina (yes, we have mountains, in addition to our beautiful beaches and marshes). Almost meaning I have lived here 48 years, but didn't grow up here. I was a Navy brat, and proud of the term! I did live in Illinois for a while, as a child--at Great Lakes. I look forward to feeling at home in this community.

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drae
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Re: Wading in slowly

Postby drae » Sun Apr 22, 2018 8:14 pm

Welcome, BSchmaltzy. One question: Are you trying to tell us something besides your name? =) LOL

I enjoyed your missive. I write long posts, too. And, I am new, relatively speaking. I first showed my name here in December. Since then, I have tried to figure out my symptoms, the protocol and what in the world should I be working on this hour. I've successfully "almost" reversed my newly discovered diabetes with exercise and eating. I am sleeping like a rock for the first time in my life. I weigh less than I have (when not dying) in the last 23 years. And, I still am not sure what I should be doing hour by hour but I am certainly much busier and happier than I was. And I thought I was busy BB (before Bredesen).

I don't know that I have any answers for you but surely can appreciate and sometimes understand the problems and challenges. I truly do welcome you and hope you will continue to wade in slowly. That seems to be the only way this works. Everytime I get in a hurry I end up having to go again slower. I can guarantee this thing works just because what little I have done is changing things so fast for me. Folks here are very helpful and you will figure it out. As long as you don't need to have it all done by Thursday, LOL! Hope to see you around.

My best,
Drae
Drae -- floundering forward, everlasting beginner.
Poco a poco. it don't work if you don't do it.
JulieG: Sticking with it slowly.
G.K. Chesterton: Practice makes progress.
A thing worth doing well is worth doing badly at first.


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