A Ridiculously Late Introduction

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
PeterM
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A Ridiculously Late Introduction

Postby PeterM » Sun Nov 24, 2019 9:48 am

I’ve been posting on this wonderful site for the last year now and somehow have never managed to properly introduce myself. I am an about-to-turn 70 year old male with one Apoe4 allele. My mother became symptomatic for MCI at 79 and then progressed slowly into mild (then moderate) Alzheimer’s before dying at 87. My father died in his sleep at age 60 years ago. He was, we know now, at least a 3/4 because my sister just discovered (to her great dismay) she has two 4 alleles. Fortunately she has always had an ideal lipid profile, so she’s already ahead of the game that way, and she has also fully embraced a Bredesen style approach to health maintenance, so another plus.

Unfortunately for me me my primarily health concern (or more immediate one, anyway) is Chronic Fatigue Syndrome. On a 10 scale I function between a level of 3 and 4, which is less about feeling overtly fatigued all the time than it is about having no aerobic capability whatsoever. Even so, I do fine around the house and carry on reasonably well in the world—but it’s like running your life on a 9V battery: a slow-motion existence, a constant Zen practice. Of course, one major downside to CFS is I cannot exercise. Which makes me a little crazy sometimes, but okay, back to Zen. Be Here Now. All that. Luckily, I have absolutely the best family and friends support and feel blessed to be comfortably retired along a beautiful stretch of coastal Massachusetts. So...no REAL complaints. Just wish I could move that darn blood thru the brain!

Lastly, FWIW, I became interested in cardiovascular disease years ago and followed the old Pritikin low-fat diet for ages. In my middle 50s I was happy to receive a calcium score of zero. But then my blood sugar began to creep and I embraced low-carb eating. Lipid profile looked good so I stuck with that for years. More recently—after discovering my 3/4 status—I adopted a more Gundry nuanced approach to diet. It’s a bit like that old Pritikin business, just with lots (and lots) of olive oil. I need to get another CAC test perhaps. But I’m kind of chicken too. We’ll see.

In any case, I’m extremely grateful for this site and for everyone who makes it the special community it is. Like many I feel WAY less alone because of you guys. Thanks. You’re great.

JFT
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Re: A Ridiculously Late Introduction

Postby JFT » Sun Nov 24, 2019 3:22 pm

Hi Peter
Have just found the site today. There was so much to take in when I had my 23 and me done I could only do it in small chunks. Reading your email you describe very well the way I live. I’ve had chronic fatigue for many years, in fact it took forever to get diagnosed. I just worked the number of hours I could to pay my way. I am retired now so I can pace myself. I have lost many friendships through not being able to keep up but I am very independent and know my limits. My mother had Alzheimer’s and my father took care of her until she passed away at 81 he was absolutely fine with that. He lived for another 10 years. I eat very nutritiously, organic when possible and take necessary supplements. I am doing well here in MA. We just would like to know what’s ahead. It’s great to have found this site. Be well. Jan

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Re: A Ridiculously Late Introduction

Postby slacker » Sun Nov 24, 2019 4:35 pm

PeterM wrote:
In any case, I’m extremely grateful for this site and for everyone who makes it the special community it is. Like many I feel WAY less alone because of you guys. Thanks. You’re great.


Hi Peter;

You are part of "you guys" and are also great!
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Re: A Ridiculously Late Introduction

Postby PeterM » Sun Nov 24, 2019 6:13 pm

JFT wrote:Hi Peter
Have just found the site today. There was so much to take in when I had my 23 and me done I could only do it in small chunks. Reading your email you describe very well the way I live. I’ve had chronic fatigue for many years, in fact it took forever to get diagnosed. I just worked the number of hours I could to pay my way. I am retired now so I can pace myself. I have lost many friendships through not being able to keep up but I am very independent and know my limits. My mother had Alzheimer’s and my father took care of her until she passed away at 81 he was absolutely fine with that. He lived for another 10 years. I eat very nutritiously, organic when possible and take necessary supplements. I am doing well here in MA. We just would like to know what’s ahead. It’s great to have found this site. Be well. Jan


Hi Jan, I’m glad to hear you are fully independent despite the CFS. I don’t know if you keep up with Cort Johnson’s excellent Health Rising website addressing all things relating to research in the CFS field. He and it are first-rate. PM me if you ever feel like you need a little CFS pep talk. Happy to offer what I can.

As I’m sure you are already beginning to discover this site contains a wealth of information. Click on Board index (above left) and check out Getting Started and the Primer. Lots of great stuff. Additionally there are many many informed people here who share knowledge generously and freely. Good luck, and be well yourself!

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Re: A Ridiculously Late Introduction

Postby PeterM » Sun Nov 24, 2019 6:15 pm

slacker wrote:
PeterM wrote:
In any case, I’m extremely grateful for this site and for everyone who makes it the special community it is. Like many I feel WAY less alone because of you guys. Thanks. You’re great.


Hi Peter;

You are part of "you guys" and are also great!


Thanks, Slacker. I still feel like such a new guy, but I’ll take it!

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Lisa G
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Re: A Ridiculously Late Introduction

Postby Lisa G » Sun Nov 24, 2019 6:53 pm

PeterM wrote:
JFT wrote:Hi Peter
Have just found the site today. There was so much to take in when I had my 23 and me done I could only do it in small chunks. Reading your email you describe very well the way I live. I’ve had chronic fatigue for many years, in fact it took forever to get diagnosed. I just worked the number of hours I could to pay my way. I am retired now so I can pace myself. I have lost many friendships through not being able to keep up but I am very independent and know my limits. My mother had Alzheimer’s and my father took care of her until she passed away at 81 he was absolutely fine with that. He lived for another 10 years. I eat very nutritiously, organic when possible and take necessary supplements. I am doing well here in MA. We just would like to know what’s ahead. It’s great to have found this site. Be well. Jan


Hi Jan, I’m glad to hear you are fully independent despite the CFS. I don’t know if you keep up with Cort Johnson’s excellent Health Rising website addressing all things relating to research in the CFS field. He and it are first-rate. PM me if you ever feel like you need a little CFS pep talk. Happy to offer what I can.

As I’m sure you are already beginning to discover this site contains a wealth of information. Click on Board index (above left) and check out Getting Started and the Primer. Lots of great stuff. Additionally there are many many informed people here who share knowledge generously and freely. Good luck, and be well yourself!


Hi Jan and a second welcome to the ApoE4.info website. I am glad you found your way here. I understand completely about taking the 23 and me results in chunks so as not to overwhelm! Seems like a science degree is in order to decipher much of that genetic information! It's unfortunate to hear about your having lost friendships along the way because of your CFS. Sites like this are instant communities of like-minded individuals and you don't have to be running around to stay in touch here! What was that yellow pages ad way back when, "Let your fingers do the walking!" Or now even we can speak into our computers so our fingers don't even have to exercise on the keyboard!! I believe virtual relationships today are people's everyday experiences because of our busy lifestyles.

Peter mentioned a few areas on the site. I thought I would provide you with some links. The primer is a great place to start as it is written by a physician in laymen's terms. There is also a "How-To" Guide that makes your journey around the site much more efficient. Also, you mentioned that you are in Massachusetts. This Meet-Up forum had some chatter a few months ago about a New England meet-up. I'm not sure whatever happened with that. Finally, I've found the search function to be an awesome way to research questions you may have as most likely, someone has asked the question before and there are several threads of information regarding that topic. Again, welcome to the community and please don't hesitate to reach out with any questions, comments or recommendations! Lisa
Lisa H. Gerardi, MA
National Board Certified - Health & Wellness Coach
Functional Medicine Certified Health Coach
Integrative Nutrition Certified Coach

JFT
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Re: A Ridiculously Late Introduction

Postby JFT » Sun Nov 24, 2019 7:10 pm

Thank you Lisa. Just trying to get my head around the abbreviations. Jan.

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Re: A Ridiculously Late Introduction

Postby TheBrain » Tue Nov 26, 2019 6:30 am

PeterM wrote:
JFT wrote:Chronic Fatigue Syndrome

Welcome, Peter and JFT!

I just wanted to mention that some cases of Chronic Fatigue Syndrome can be attributed to mold toxicity or other types of biotoxin illness. If you haven’t explored this possibility, you might consider doing so. We have multiple threads on this topic. I’m on my iPad, and it’s difficult to search, and copy and paste links, but words you can search on in this forum include: CIRS, mold, mycotoxins, Lyme.

Here’s one relevant article: Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705282/
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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Re: A Ridiculously Late Introduction

Postby slacker » Tue Nov 26, 2019 8:12 am

JFT wrote:Thank you Lisa. Just trying to get my head around the abbreviations. Jan.


Hi Jan;

Sometimes members forget that everyone isn't familiar with all the abbreviations. There is a wiki chapter list, which may not be 100% complete, but a good start. And, please feel comfortable asking the poster what the abbreviation means. If you have a question, it is almost guaranteed that some one else does as well! We all learn together.
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PeterM
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Re: A Ridiculously Late Introduction

Postby PeterM » Tue Nov 26, 2019 10:50 am

TheBrain wrote:
PeterM wrote:
JFT wrote:Chronic Fatigue Syndrome

Welcome, Peter and JFT!

I just wanted to mention that some cases of Chronic Fatigue Syndrome can be attributed to mold toxicity or other types of biotoxin illness. If you haven’t explored this possibility, you might consider doing so. We have multiple threads on this topic. I’m on my iPad, and it’s difficult to search, and copy and paste links, but words you can search on in this forum include: CIRS, mold, mycotoxins, Lyme.

Here’s one relevant article: Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705282/


Thanks, Brain! Most mold, mycotoxin affected CSF patients present with multiple neurological symptoms while I am a one symptom sufferer: no aerobic capacity. I’ve researched extensively on the biotoxin topic, hoping I might somehow fall under that broader illness umbrella. But I have never been able to make any kind of connection. Several years ago at age 65 I slipped to a functional level of 4 from a level nearer to 8. This was definitely the result of exercising far too much on successive days. Unfortunately I have remained at that level 4 every single day since. So...it’s hard to make sense of that in the context of mold etc. That said, I was hugely impressed by Table 2 in the study you linked comparing CFS patients to controls for different biotoxin loads. The difference is mind-blowing. Virtually every CFS patient was positive for several different toxins while zero of the controls were. Wow. Something to think about. Again, thanks for the link.


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