Just accepted into an AD Study

[reluctantexan]

Thanks Julie G. Yes, before symptoms, but I'll be kicked out if I have no amyloid plaque. Guess that's the sum of it.

This is what I believe SHOULD happen if I am accepted into the study. Somebody from The Bredesen Protocol needs to know of my long-standing HRT and Keto diet because I ought to be one who does not have plaques. No apoE4 in my DNA, either. Any idea how I can get the two schools (drug/no drug) to notice?

[Julie G]

Any idea how I can get the two schools (drug/no drug) to notice?

We're paying attention, my friend. Can you please describe your version of the keto diet? There are so many variations... I agree that your FGD/PET scans results will be revealing.

[Rainy]

Oh my! Entering a drug trial is such a complicated, time-consuming and nerve-wracking endeavor! And such an intensely personal issue. I am sincerely grateful to each and every person who joins a study or trial.

To be clear, my intent in my earlier post here regarding the 3 studies was to pass along important information that I could not find anywhere else - and was not given - until I requested the consent documents for the EARLY and Generation Program trials prior to entering either the EARLY or Generation Program.

After screening I was invited to join both studies literally on the same day! Yes, you can choose only one drug trial, so at that point I had my choice of either trial. I noted that I declined participation in either the EARLY or the Generation Program drug trials. So I did not sign consents or formally enter either study. I apologize for causing any confusion or distress!

The EARLY liver risk detailed on the consent form (and in my post above) was considerably more than I was willing to take. The distance to the closest Generation Program site was too far for me or my study partner, so I await a closer location that actually materializes (two convenient locations temporarily listed as Coming Soon were pulled).

I have been signed up on multiple AD study/trial registries for a few years, waiting to make my scientific contribution. I only found out early this year via 23andme that I am E4/E4. My children each carry one E4, and I would love for the End of AD to come very soon! This forum is likely the catalyst for exactly that! Thank you so much!

[reluctantexan]

I eat Low Carb High Fat + Intermittent Fasting.
Technically, that's it. However, I have let myself get to a point where I eat very little and am concerned that my BMR has tanked. I've been in maintenance for several months, and my mantra has been, "Eat real food and only eat when hungry." In ketosis, I rarely experience hunger, hence the eating very little.

For the first time ever, I'm preparing to measure my blood ketones and attempt to eat meals like regular people do. LOL
My Blood Keto Meter arrives tomorrow.

[Julie G]

For the first time ever, I'm preparing to measure my blood ketones and attempt to eat meals like regular people do. LOL
My Blood Keto Meter arrives tomorrow.

Very exciting, reluctantexan! Let us know how that goes. You were clearly an early adopter to the whole keto thing. I'm wondering what lead you down that path? It's very easy to stall out on keto when you're only eating once a day. A few times a week, I purposefully have to eat more often just to remind my body that we're not in starvation mode. It's good to rev the engine a bit . I'm also wondering about your thyroid status...

[reluctantexan]

I have all the symptoms of low thyroid, but my labs always show normal.

TSH 1.69

T4, FREE 1.2

March 2018

The story of me and keto. Hmmm. Forthcoming if people really want to know. How did I get there.

[reluctantexan]

I received a call a few minutes ago from the Cleveland Clinic. The Sponsor has cancelled the Study because of raised liver enzymes in too many participants. Guess I dodged a bullet on that one. I asked why I'd been chosen in the first place since I'm not apoE4. She told me my advanced age and my father's dementia. I still don't know whether I have plaques. My husband says some things are better left unknown. Don't know if I agree.

This journey so far has been existentially very good for me. I've always been one whose goal has been "Learn something new every day." My intent is to continue. In case I don't get to see you guys again, I'll just share what I wrote this week: My Obituary.
I

[NF52]

Oh, reluctantexan, I am going to miss your wacky, tell-it-like-it-is wisdom!
Rainy had been concerned about the one person out of 200 who developed a "serious liver injury" that eventually resolved, but continued for a while after she ended the JNJ trial. That was one of the reasons to post some of the info from the consent form.
That's a good sign that external evaluators do their jobs on trials and stop them when a serious adverse effect is seen. So far, so good on the Generations trial of an immunotherapy drug and a BACE-1.
As someone with ApoE 3/3 you are less likely to have amyloid at your age. I would declare victory and enjoy life!
Hugs, my friend.

[WillsMeme]

Hi reluctantexan and all posters. I have been participating in the A4 clinical study for the past 3 years. It is a double-blind study, so I don't know if I'm getting the placebo or the test drug, solenezamab. The trial has recently been extended to 4 1/2 years from 3, and the dosage was doubled. I know from the "qualifying" tests that I have amyloid buildup, and I decided to "unlock" the 23&Me ApoE gene result because I had nothing to lose. I am ApoE 3/4. My mom, her 2 siblings and both my grandmothers had dementia, so I've been looking down the barrel of a loaded gun for decades. When I read Dr. Bredesen's book, all the tumblers fell into place. I have no faith that the A4 study will be any more successful than previous drugs, but doing all the tests made me eager to seek out a practitioner who could give me a personalized Recode program. To quote Louis Pasteur, "fortune favors the prepared mind". My advice is to study, learn, watch, talk about AD and do everything you can to avoid it. Go for it!

[reluctantexan]

Yes, study, learn, eat well, exercise the body and the mind. Which reminds me: Any brain plasticity websites recommended? I've only ever used Luminosity.