musings on APOe4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
User avatar
Stavia
Mod
Mod
Posts: 5217
Joined: Tue Apr 29, 2014 6:47 pm
Location: Middle Earth

musings on APOe4

Postby Stavia » Mon Aug 25, 2014 6:47 pm

I didn't know where to post this, so here goes. This is my attempt to think broad and deep as per Sandra Chapman's recommendations
I've watched and worked in the field of medicine since I started medical school in 1979 and graduated in 1984. My biochemistry professor worked with Krebs. It's been that long.

And I've observed how the field has evolved. Often what we thought was a good idea in the past turned out with more research to be not a very good idea at all. Some diversions into side paths became huge highways of progress, some tuned out to be dead ends.

I've seen enthusiasm trump caution (the Cox-2's are a good example, rushed through to market with inadequate testing. The new class of anticoagulants might very well be another one - if I needed decades of anticoagulation I'd choose warfarin over the novel agents, we have decades of experience with warfarin and only a few years with the newer ones). I've seen medications and approaches come, and go, and sometimes come back again (such as the aspirin flip-flop and flip again). I've seen what was once thought of as cutting edge disappear into obscurity.

I am not so arrogantly supportive of our current body of knowledge to think that now, in 2014, this is suddenly no longer the case and we now have certainty. I feel that in a few decades much of what we now understand about biochemistry and genomics will be considered rudimentary, just as we now look back from our not-so-lofty hillock on the last 5 or 50 or 500 years.

As this exploration proceeds, I feel we are still opening up tiny areas of the map. It is indeed less of an unknown continent that it was 5 or 50 or 500 years ago, but I feel that the vast majority of the landscape is still shrouded in darkness. I have had to work with this situation for three decades. Often I feel as if my work is smoke and mirrors, and I am but a companion in the health journey, sometimes as bewildered as the patient. Now I am in a situation where my own well-being is significantly threatened, and there are no broad highways to traverse. Instead, there are conflicting signs, there are snarling red-eyed beasts roaming dark forests of fear, there are quicksands of doubt and despair.

However, we do have to stand somewhere in this dark, uncertain, shifting landscape. I have hope that with time, more of the workings of our gene will become clear. And until then I have choices to make, so as not to be consumed by fear, doubt, despair or lost in depression.

So, for now, I choose a position of moderation, so as to give me flexibility to move as more information comes to light. I choose a position of standing back and trying to get a broad vantage of the whole landscape. I choose to walk in the fields of what we do know for certain. And I choose to celebrate what I have, every day - because today is still a good day.

User avatar
Julie G
Mod
Mod
Posts: 8060
Joined: Sat Oct 26, 2013 6:36 pm

Re: musings on APOe4

Postby Julie G » Mon Aug 25, 2014 10:37 pm

Beautifully said, Stavia.

I was particularly struck by the vulnerability you express as a healer. Your patients are blessed to have you as their advocate and companion on their journeys. And, we're lucky you have you on this E4 odyssey with us.

Welcomeaboard
Contributor
Contributor
Posts: 915
Joined: Tue Oct 29, 2013 8:28 pm

Re: musings on APOe4

Postby Welcomeaboard » Tue Aug 26, 2014 5:04 am

That is the Buddha's way, the middle way, that He eventually found. First he was one way and then he was another way and then He found the way to the path to enlightenment, so there is hope for all. As the path has existed in the past, the present and will in the future for all to find that seek the path. The path does not change, but your perception of the path changes as your knowledge changes.

Eggs were in and then eggs were out and then eggs are back in, the egg did not change, just your perception of the egg changed.

The Maharishi Welcomeaboard Yogi

User avatar
Gilgamesh
Mod
Mod
Posts: 1711
Joined: Sat Oct 26, 2013 11:31 am
Location: Northeast US mostly
Contact:

Re: musings on APOe4

Postby Gilgamesh » Tue Aug 26, 2014 1:23 pm

Stavia,

Wonderfully wise, wisely wonderful words.

I took many steps back recently, and have started thinking precisely like you. I'm slowly cutting out most supplements, and I've even backed off extreme CR (a big step for me!).

With age comes awareness of my limitations. It made me take the "meta step" of wanting to talk with people with far more age and experience than you and I have (although talking with you, despite your tender age, will clearly also be a learning experience!): researchers in their 60s and 70s. They've seen, so many times, how research results can prove wrong, completely wrong. I've done that -- through email, at conferences, etc.: talked to smart people with decades of experience in medical research. Even if I'm as smart as I think I am (and I wonder...), experience counts for a lot. In my younger years, these experienced researchers always seemed so timid and conservative. Now I'm starting to think many -- not all, of course -- are simply wise.

GB

sarahb12
Senior Contributor
Senior Contributor
Posts: 167
Joined: Mon Nov 04, 2013 8:21 pm
Location: Boise, id

Re: musings on APOe4

Postby sarahb12 » Tue Aug 26, 2014 9:37 pm

I hear you. What gives me hope that we will learn a little faster is that we suddenly have a few more tools. Genetics being one and another being that the information age is reaching a critical mass. There is still a wealth of miss-information, but there are also some very bright people and people who are also talented with programming tools and a lot of sharing of information. I think this will help us figure out the dead ends quicker as well as get hints into the right paths.

This group of people, for example are kind of a research machine, finding gems much faster than many people.

S
E3/E4

User avatar
LillyBritches
Contributor
Contributor
Posts: 588
Joined: Tue Oct 29, 2013 8:35 pm

Re: musings on APOe4

Postby LillyBritches » Thu Aug 28, 2014 1:56 am

LOVE this, S! More later. I hate to bang in and bang out...but that's my life. :(
I'm just a oily slick in a windup world with a nervous tick.

RedNailz
Contributor
Contributor
Posts: 83
Joined: Wed Jan 29, 2014 4:25 pm

Re: musings on APOe4

Postby RedNailz » Thu Aug 28, 2014 5:37 pm

Stavia wrote: I choose to walk in the fields of what we do know for certain. And I choose to celebrate what I have, every day - because today is still a good day.


THANK YOU for writing this, the whole piece and especially the quote above! I find it very helpful to see how other Apoe4s maintain perspective.
4/4

Ski
Senior Contributor
Senior Contributor
Posts: 620
Joined: Wed Oct 23, 2013 2:18 pm

Re: musings on APOe4

Postby Ski » Sat Aug 30, 2014 10:48 am

Ive been really amazed at the commitment some members have adopted in their protocols and sacrifices they make. Especially when few are conclusive in their ability to delay or prevent either disease. And I’m not talking about the obvious like eating healthy, as we know that provides overall good health.

I also came to realize for those who are new to this site and have recently learned of their status, having to sift through all the information can certainly be overwhelming and also appear conflicting. I know Ive been there.
Im certainly in a better place now having taken more than a few steps back. I believe Ive achieved this through a year of personal experimentation and "acceptance".

I personally am not as ridged as probably most here as I have a different philosophical viewpoint. I believe we chose to be born in this universe to truly experience this life and live it. (The old/young soul story) We will all die and unfortunately some of us have been dealt an ugly hand genetically but we must make the most of it. I've always lived my life or tried to, ensuring that if it were to be cut short, to have as little regret as possible.

For instance I ate a juicy gourmet burger with truffle fries last night at my favorite burger joint and felt absolutely no regret. Damn, it was good! If that occasional burger and fries lead to my demise, would I have regretted it? Not in the least. The same goes for anything else. I mountain bike and ski some pretty extreme stuff and I would never give that up (in case of head injury), as to me….that’s giving up on living. That’s trying to plan for a future, without living in the present and we simply don’t know what lies ahead in the future anyway.

Im going to steal and modify a quote relevant to our situation, but that really hit home with me………be diligent, prudent and a fighter but remember that life is so short regardless and don’t give up enjoying the present, for fear of the future, with the result that we do not live in the present or the future and then we die having never really lived.

User avatar
Stavia
Mod
Mod
Posts: 5217
Joined: Tue Apr 29, 2014 6:47 pm
Location: Middle Earth

Re: musings on APOe4

Postby Stavia » Fri Apr 10, 2015 2:06 pm

its been several months, and we as a group have been opening up many important areas of discussion. We have all been trying to balance a seesaw of various interventions, but the seesaw of lipids vs glycaemic control that we have focussed on has morphed into one of those wobble boards you get in a gym to train balance. One of the factors identified is now that of weight control. Too low BMI seems to be risky as sarcopaenia (low muscle mass) seems to be a negative factor for us.
Brothers and sisters, I again urge you all to consider not to be extreme in any intervention aimed at altering biomarkers to extreme levels without thinking it through very carefully and considering the risk benefit ratio. Obviously this excludes an already established condition such as diagnosed coronary artery disease for example. Until you are sure, IMO the middle ground is the safest. The wobble board may tip in a direction you really don't want it to go if you press too hard on one edge. We are complex complex creations.

circular
Senior Contributor
Senior Contributor
Posts: 4623
Joined: Sun Nov 03, 2013 10:43 am

Re: musings on APOe4

Postby circular » Tue Sep 15, 2015 3:09 pm

Always love your contribs Stavia. Just wish I had the health to enjoy the life even a conservative approach suggests. Fish and exercise for starters make me so histamine sick with fatigue I cancel everything meaningful in life. Don't know how I can do my best when my best knocks me down and even moderate advice is incompatible. Seems my body hates me and I'd be better off with Alzheimer's and forgetting I feel this way so often. Very very bad day :(
ApoE 3/4 > Thanks in advance for any responses made to my posts.


Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 8 guests