Introduction - LAC1965

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
LA18
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Introduction - LAC1965

Post by LA18 »

Hello. I’m a 49 year old ApoE 4/4 with a number of other medical conditions that make me especially fearful about my prognosis. I have mast cell activation disorder and have had cognitive reactions to many foods for years. I also have an atypical form of diabetes that has resulted in an insulin secretion deficit and may or may not involve insulin resistance.

I had my genome sequenced via 23andme to see if I could gain any insight into my health issues and was greatly saddened to learn about my Apoe status. I have had the specter of cognitive impairment hanging over me for some time (since my mid to late 30s), with the food reactions in particular, and learning of my genetic predisposition to AD sort of formalized what I guess I probably already knew. Since learning about Apoe, I’ve done pretty much everything I can to minimize my risk.

Interestingly, I’ve been on a ketogenic diet for about 8 years, in order to control my blood sugar and because I simply couldn’t think when I ate carbohydrates. After learning I was a 4/4 I started exercising regularly, and I’m taking most of the recommended supplements. I eliminated the foods I react to, which include anything high in histamine, from my diet about 4 years ago.

I just wanted to introduce myself since I’ve been reading posts on this site for quite some time and have signed up for the Buck Institute trial. I am so grateful for this opportunity, which couldn’t come at a better time for me, as I’ve been experiencing a notable increase in memory problems over the past few months. Juliegee, thank you so much for arranging this and for making it available to everyone. Also, the detailed information people have posted here about their diet, supplements, exercise, research, etc. has been so helpful to me, so I wanted to say thanks to everyone for that as well.

Liz
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Re: Introduction - LAC1965

Post by Silverlining »

Welcome LAC! I'm so glad you are here at this time. I'm very hopeful that Dr. Bresden and his team can reverse your cognitive symptoms. However you seem to be doing quite a good job on your own investigating and addressing your health concerns. I also want to mention we have some similarities. I've recently turned 50, I'm apoe 4/4, I have ehlers danlos syndrome which appears to include some mast cell activation (h1h2 therapy has mitigated some symptoms), I also have blood sugar problems which appear to be insulin deficient, not resistant. (I am a mystery to my endocrinologist). Finally to round out the picture, I have autoimmune thyroid and factor five leiden. I'm not sure if you are female or male but there are a few other women that have some of these same diagnoses. I truly believe we are doing all the right things and between our diet exercise regimens and the new science breakthroughs we are poised to maintain decent health into our later years. So keep the faith and reach out to your apoe brothers and sisters for any support you may require; we're a family here :).
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LillyBritches
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Re: Introduction - LAC1965

Post by LillyBritches »

Welcome squared, LAC! Silver, LAC signed off as "Liz," so I'm thinking she's a she. :)

And, man...there are quite a few female 4/4s here who have the above-described health conditions, right? I've got Factor V, like Silver, and also have hypothyrodism. I think all our Factor Vs are heterozygous, Silver. I've yet to encounter a homozygous Factor V.

LAC, I'll betcha dollars to a donut that some, if not all, of your symptoms will abate once you start following Dr. Breseden's protocol (some of which we hacked over the course of a couple of years...of course...his is the real deal and stuff). :)

You're about the same age as our 4/4 leader Julie (she'll vehemently deny she's our leader, but by gum, she is) when she was having cognitive issues...before she and her neurologist, Dr. Perlmutter, formulated her plan of care. She's completely reversed her symptoms. It's amazing. You need to talk to her.

Welcome, again! You're truly among friends and and a great source of support and information. :)
I'm just a oily slick in a windup world with a nervous tick.
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Re: Introduction - LAC1965

Post by Welcomeaboard »

Hello Liz, you did not mention if you had your 25 hydroxyl vitamin d 3 test done and are supplementing with vitamin d 3 as that may help as well as turmeric(Juliegee noticed a difference when she started on bioavailable turmeric supplements as to brain clarity) both of these are according to trials able to clear amyloid beta deposits in the brain. Each of them also do more than that as to bodily chemistry improvement as well. You definitely are on the right path to achieving the best you and that is the purpose of this site, to answers questions and to give information that will help each person to achieve their best n=1 outcome that leads to a longer and healthier life for them.
Welcome to the team.
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Re: Introduction - LAC1965

Post by Sandraz »

Hi Liz,
Also be sure to look at thread about apoe4 women and hormones if you haven't already. Seems super important for us! I was having word recall issues that in reality were not too bad, but horrified me when I found out apoe4,4 and what that means. Anyway, after multiple supplements and dietary changes (including bioavailable turmeric and BHRT) things have improved for the better. Ideas here do work! But gotta test them on yourself. Here is link to thread on hormones.

viewtopic.php?f=16&t=119&hilit=HRT

For sure this forum is the right place for amazing info. :)
Sandra Z
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Stavia
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Re: Introduction - LAC1965

Post by Stavia »

hi Liz - welcome!!
There's a LOT of information on the boards, take your time and ask away.
I hope you find some answers here.
xxx
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Julie G
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Re: Introduction - LAC1965

Post by Julie G »

Welcome, Liz! Mast cell activation, MCA, was the primary reason that I participated in 23andMe. A remarkable number of members here deal with that and/or unusual allergy/anaphylaxis issues. My guess is that there's some relationship via E4's greater propensity for inflammation and hence blood vessel permeability. FWIW, as I honed my neuroprotective regimen; my MCA has almost disappeared :D

As a few others mentioned, I was also having some pretty scary cognitive issues when I learned of my 4/4 status at exactly your age. I was also very frightened for my prognosis back then. Two and a half years later, I feel amazing; healthier, stronger, and more stable than ever. I feel blessed and very hopeful for the future...for ALL of us.

Yay on joining Dr. Bredesen's trial!!!
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Re: Introduction - LAC1965

Post by Starfish77 »

Welcome Liz,
You have done so well improving your health on your own, you should be able to do a fine job following the new
protocol. You are with friends and will be able to get answers to many questions in one spot.
Starfish77 4/4
LA18
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Re: Introduction - LAC1965

Post by LA18 »

Thanks for the warm welcome! It’s great to hear from people with similar experiences and so much knowledge. I plan to read through the various sections of this site more systematically and I’m sure I’ll have lots of questions.

I am taking curcumin and have my vitamin D levels checked regularly. My D was in the target range, and then dropped for some reason, so I’ve upped the amount of that I take from 5000 to 10,000 IUs daily, per my doctor’s suggestion.

I will definitely read the hormone replacement thread. I really think that changing estrogen levels could be an issue for me right now. Something is certainly different. I have made an appointment to discuss this with my doctor next week.

Silverlining, and anyone else with mast cell issues, I was wondering if you have ever taken Gastrocrom (cromolyn sodium) and, if so, if you found it helpful. I take an H1 blocker but I’m not certain that it really does much for me. I have taken H2 blockers but stopped because I have digestive issues and I think they hindered my digestion some. Also, I found a paper linking H2 blockers to cognitive decline. I’m not sure if you’ve seen this, but I posted the link below.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2860609/

I sometimes think I’m too paranoid about things like this. This was one study (n= 1558 African Americans). I don’t believe that other prospective studies have shown this type of effect. I suspect that my histamine level is pretty high right now, so I’m thinking of going back on the Pepcid, which did seem to help manage my symptoms, at least until things settle down some. Okay, now that I’ve reread this paper, I’m not sure. Maybe I’ll try the Gastrocrom first….
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Re: Introduction - LAC1965

Post by Gilgamesh »

Welcome, Liz! Like you, I did 23andMe mostly to help me do some sleuthing about chronic health problems, and then... "47% chance of being diagnosed with Alz's by the age of 80"!?!?!? It changed my life.

But, despite some down periods at the beginning, it's full-speed ahead with prevention now.

Look around, you'll find a lot here -- and a lot of people willing and able to help.

Un abrazo,
GB
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