Seeking others using Bredesen protocol at mid-stage AD

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
rebdeb
Contributor
Contributor
Posts: 5
Joined: Fri Dec 15, 2017 6:33 pm

Seeking others using Bredesen protocol at mid-stage AD

Postby rebdeb » Thu Feb 01, 2018 8:26 am

Hello. Been reading on this site occasionally for month or two. Thank you to all!

BACKGROUND. I am care partner for my apoe4/4 husband age 66. Mid stage AD. Diagnosed with all the standard tests two years ago. He started on parts of Bredesen protocol a month ago at suggestion of family doctor. Will be seeing functional med doc who uses this protocol so will then really get all the parts going - 1st appointment late March. Made the appointment in early November. 15 or so on MME a few months back. Husband very aware and open about his illness. Discusses this with me. His symptoms mostly visual and verbal aphasia and exec function and short term memory. No issues remembering people or most experiences. Great guy!!!!

QUESTION. looking for others who have had even moderate success with protocol at mid-stage. From reading it seems unlikely to get much improvement - so looking for examples of even small success.

Thanks!

Debby

Cas
Contributor
Contributor
Posts: 36
Joined: Sun Jan 07, 2018 3:58 pm

Re: Seeking others using Bredesen protocol at mid-stage AD

Postby Cas » Thu Feb 01, 2018 10:12 am

Hi Debby

Welcome to the site and thank you for posting.

I'm sure that you will hear from others on here soon who have experience of using the protocol at mid stage and I really hope that's helpful to you. In the meantime have you found our primer (viewtopic.php?f=33&t=1418) it was prepared by one of our members and provides a lot of detailed information that may be useful alongside the steps your husband is already taking.

Great to hear that your husband is aware and that the two of you can discuss it so openly, wishing you both all the very best for your appointment in March.

Take care
Cas
Functional Medicine Coaching Academy Student

Fiver
Senior Contributor
Senior Contributor
Posts: 608
Joined: Wed Feb 01, 2017 12:51 pm

Re: Seeking others using Bredesen protocol at mid-stage AD

Postby Fiver » Thu Feb 01, 2018 10:35 am

Debby - when my mom started having troubles the Bredesen protocol was basically just the outline from his first paper in the journal Aging. We tried to phase in some of it, but she wasn't interested. Just too far along. It's great that your husband is aware and motivated - it makes all the difference. My basic suggestions would be (1) find a good functional medicine doctor who has a sense of the urgency and (2) work together to incorporate any lifestyle changes. You've already done this. It's a really good start. Personally, I'd be a pest about trying to push up that appointment. Or suggesting that maybe some blood work can be done ahead of time, so you can discuss it at the first appointment. For example, on a first attempt I heard that there was a 6 month wait. But then I found out that there were four other trained doctors in the same practice who had openings in two days! I found that once you're in all the doctors in a practice seem to confer - so you get the group wisdom anyway. Might be worth checking. No need to wait on the basics of exercise, sleep, and diet of course. Eliminating the obvious problems, if there are any, can be a first step. My personal opinion is that it is god to make any lifestyle changes apparent to relatives who might benefit from them themselves. Given the genetics. Things like eating better and being active are contagious - even if relatives don't know all the reasons. I found though that eventually the blood marker information is just really important - otherwise you don't know the specific problems and can't track early improvements.
Concerned, but hopeful. Introverted, but will talk about science.

User avatar
slacker
Mod
Mod
Posts: 2124
Joined: Wed Aug 03, 2016 6:20 pm
Location: Kentucky

Re: Seeking others using Bredesen protocol at mid-stage AD

Postby slacker » Thu Feb 01, 2018 11:22 am

Hi Debby;

Attached are Dr Bredesen's initial papers with some case studies. Hope they help somewhat with your question. My understanding is that the greater the cognitive decline at the start of the protocol, the slower the improvement, and may not result in complete reversal. But for some families, even improvement can be a worthwhile goal.

Bredesen AD 2014 case studies.pdf

Bredesen Rev-Cog-Dec 6.13.16.pdf
You do not have the required permissions to view the files attached to this post.
Slacker
E4/E4

rebdeb
Contributor
Contributor
Posts: 5
Joined: Fri Dec 15, 2017 6:33 pm

Re: Seeking others using Bredesen protocol at mid-stage AD

Postby rebdeb » Thu Feb 01, 2018 1:26 pm

Thanks everyone who responded so far. I feel better just not feeling alone.

I will re-contact the functional doctor's office, but if someone on this forum has a suggestion of a Bay Area (San Francisco and surrounding) functional med doc who is familiar with Bredesen Protocol, happy to receive the names. We will be seeing Dr. Hathaway in late March, unless we can find someone sooner.

Already read Dr. B's papers back in the fall; that's why looking for some who tried this mid-stage AD. We had as many blood and urine tests and such done that our new primary was willing to order. Have to wait until functional med appt. to get most of what really matters - like metals testing.

Debby

anne from california
Contributor
Contributor
Posts: 93
Joined: Tue Nov 21, 2017 11:17 pm

Re: Seeking others using Bredesen protocol at mid-stage AD

Postby anne from california » Thu Feb 01, 2018 2:32 pm

I'm seeing Dr. Hathaway in mid-April. I wish I had an earlier appt--I'd switch with you! While you wait for your appointment, though, I wonder if you could see a non-Bredesen FM doc to at least get the metals or cirs testing going. (I think there are also some direct-to-consumer labs that will do just about any test you want to order--and pay for. True Health Labs, for example.) Or check with Hathaway's office to see if they could order the first round of Bredesen testing in advance of your first appointment (I recall that she works with a specific lab; it was mentioned on her bHRT video), and get you on a cancellation list so that your husband could be slotted in if someone else cancels. Meanwhile, another Bay Area doc is Myrto Angela Ashe. Not sure if it's okay to link to docs here, but you can find her with a quick Google. She's also in San Rafael.
57 years old, ApoE 3/3, mother and grandmother have/had late-onset dementia, eager to save brain and optimize health.
Thank you all for sharing your knowledge!

Lindajane
Contributor
Contributor
Posts: 28
Joined: Thu Nov 23, 2017 1:14 pm
Location: Ga

Re: Seeking others using Bredesen protocol at mid-stage AD

Postby Lindajane » Thu Feb 01, 2018 4:35 pm

Hi Debby's,
I saw a functional medicine Doctor last November because I was having memory problems, feeling tired and lackadaisical. I thought I might have mold illness since I had had it a few years ago and the symptoms were so similar although To my knowledge I had not been around any mold. I was exercising, eating healthy and taking good vitamins and supplements. He ask me to try a high fat diet he called the Mito diet and to read Dr. Bredeson's book. He added a couple more supplements and upped some I was already taking. It took me 2 or 3 weeks to get going on the diet and I used a nutritionist he recommended.

It's been 2 1/2 months and I feel like a different person. Memory is improving, more energy and I just plain feel good! It's been a miracle. When I saw the doctor last month I ask him since I was so much better did that mean I had early Alzheimer's? He explained that a diagnosis is never made until the symptoms are much worse that what I was having.

All I know is I will continue with this as long a live. I try to fast 12 hrs a few times a week, eat as clean as possible and exercise most days.

Linda

Cas
Contributor
Contributor
Posts: 36
Joined: Sun Jan 07, 2018 3:58 pm

Re: Seeking others using Bredesen protocol at mid-stage AD

Postby Cas » Thu Feb 01, 2018 5:01 pm

Hi Linda,
Just wanted to welcome you to the site and thank you for your first posting. It's great to hear that you are feeling so much better after a couple of months of making lifestyle changes, sounds like you are getting some really good support too from the FM doctor. You're absolutely right that these are lifelong changes too!
Cas
Functional Medicine Coaching Academy Student

ajc
Contributor
Contributor
Posts: 19
Joined: Fri Feb 03, 2017 1:11 pm

Re: Seeking others using Bredesen protocol at mid-stage AD

Postby ajc » Fri Feb 02, 2018 3:25 am

As an APOE3/4 myself and Bredesen trainrd practitioner in Australia what is increasingly seen as important is finding the underlying drivers. Leave no stone unturned especially CIRS and MaRCONS.
All the best for your journey to wellness.

Sent from my SM-G928I using Tapatalk

Jlhughette
Contributor
Contributor
Posts: 40
Joined: Thu Sep 28, 2017 12:25 pm

Re: Seeking others using Bredesen protocol at mid-stage AD

Postby Jlhughette » Sun Feb 04, 2018 7:54 am

Hi RedDeb

I have recently enrolled my sister age 58 in RECODE with a Bredesen trained DO who is fantastic. (At some point I will add her name to the Practicioner’s list.) My sister was diagnosed in 2016 with late 1st stage to mid stage AD. Her cognitive scores are in the 3rd percentile for her age, with petscan imaging showing lots of cellular loss in hippocampus and other areas of the brain. She had suffered from depression for 10 or so years before the diagnosis so even though my mother has AD it did not occur to us that she was also developing it. But in retrospect there was much more introversion and lack of curiosity in others or world events than before; she had stopped reading and stopped her acupuncture practice in that period as well. I noticed in the period leading to her diagnosis that she had stopped being able to follow other people’s lives and didn’t seem very interested, so I had greived the loss of that part of her for several years. I had to push quite hard to speed the process of all the blood tests and when the results came in it was clear that she has type 2 atropic as the main cause of her trouble. ( she had 2 surgeries including hysterectomy in her late 40s). It was then that she was most aware of her memory loss, as time went on she sort of accepted it I think and did not mention it as much. She also lost hearing in one ear 3 years prior to her diagnosis. Ironically the same thing happened to my mother at about the same age. I feel the lack of auditory feedback is a big contributor to cognitive decline as well. Three months after starting the process of finding the practioner, testing etc we have finally started her on a hormonal patch and several supplements. She has been doing the diet and exercise for the three months while waiting. Initially when changing to the mildly ketogenic diet we noticed a difference in her energy level. Since then, I suspect the diet has been uneven as she is in assisted living and eats the food there. She chooses the veg and protein, but because of her memory loss I suspect she doesn’t always remember and although the staff is very helpful, they are not true believers and I think they think I am a bit on the crazy side. I have gotten one nurse to read the Bredesen book and will keep trying with the others. I bring food that I cook as often as I can. Sometimes I wish I had told them she was diabetic, and they would be much more motivated to help her with the diet part. The good news is, they give her all the supplements at the prescribed times.

I am very happy to hear that your husband is on the Bredesen protocol with mid Alzheimer’s. My sister has the same symptoms you described your husband as having. Are you doing the diet and exercise along with him? I am committed to it for the rest of my life, in part because AD has been in my family for at least 4 generations. I have just sent off to 23 and me so it will be 6 months or so to find out about our genetics. It will be interesting to hear what the results of your husband’s tests turn out to be. I’m very grateful to have found ApoE 4 website and all the amazing and diverse people on it. And inspired to communicate because of your writing. I look forward to more, and I do feel cautiously optimistic for my sister and your husband. There are so many factors, enough for a book I’m sure, but the factor I am watching in my sister is whether her own commitment and determination will catch fire. So far feel it is all coming from me, but I hope that if she can get a little bit better, slowly she will develop her own will to get better. Thank you for writing, and to everyone on this site.
Hughette
3/4


Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 12 guests