#1

New to forum, but following Rap for some time. Pls forgive the length of this first post, but I think background is helpful.

My 67 yo wife (Diane aka “Flipper”) diagnosed with BVFTD, a category of dementia, that attacks younger seniors: (45-65 yo. as opposed to elderly 75+). Due to CV, diagnosis was delayed for a couple years after she survived hysterectomy due to cervical cancer (very small tumor, removed, cancer gone11/18). I am her fulltime caretaker, retired litigation attorney, very prolific researcher. She was in excellent health/athletic before all of this (and an accomplished artist for SONY online)…She is still coherent, and active though does not speak much. WE are on daily juicing (12 different veggies/fruit/tumeric/spirulina, 5 yrs now); 20+supplements; and has received 3 professional stem cell injections (700 million+) at a certified clinic/hospital in Guadalajara Mexico. I spent 6 months contacting, investigating, examining; interrogating, stem cell "administrators” (docs, clinics, hospitals whatever) @ 60 venues, across USA, Mexico, Panama, Costa Rica, Caribbean, (etc.). 90% + proved to be snake oil sellers; corrupt; quacks; bankrupt or selling “something” that may/may not be real stems (Whartons Jelly MSC). After vetting; narrowed to 7 which I REQUIRED to sign my 2.5 page contract confirming their harvest/lab protocol; representations as to the quality of their stem cells (#/viability), price etc. (NO I did NOT demand any guarantee of results). Regardless, that’s when 6 ran-- like cockroaches they are-- (a couple of which are notorious Youtube promoters). The winner, not only signed the agreement, but has proven time and again, their transparency/legitimacy (as we prep to go to round #4)! I share all of this, as i am NOT a virgin to investigative research, or the “games” people/professionals play under the guise of “alternative” or “miracle” cures. This a ”life” mission on behalf of my beloved, that I hope others can benefit as well.
I originally looked into Rap, for dementia, and got side-tracked into the “dog” research, which will be beneficial, to our “service dog” Lobo. That WILL move forward. He is dedicated to her, maybe more than I. (o;
As for Dementia, the research/results are clouded by all the AD discussion. All AD is dementia, but not all dementia, is AD. And most AD cannot be confirmed until patient is dead anyway, which oftentimes requires an autopsy.
As for animal studies, I have seen posts here that underscore problems with mice/rats etc. So I will not belabor that further….
So all the research about therapies and AD is problematic from outset.
So “searching” this site, I find little/no discussion on dementia, if anyone here, has experience, pls advise and thnks BB
( I cared for my 86 yo old father with dementia (Flipper helped) , grandma (his mom) had AD, so this is not my first rodeo.)

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Rapamycin as a preventive intervention for Alzheimer’s disease in APOE4 carriers: targeting brain metabolic and vascular restoration
#2

I assume that your wife had been evaluated and diagnosed with BVFTD by a reputable memory center. UCSF Memory Clinic, led by Dr. Bruce Miller, is one of these centers. Dr. Bruce Miller is an expert in FTD. There is no accepted treatment for FTD, but UCSF or other similar facilities, may be involved in trials of new medications. You probably have already looked in all sorts of traditional medicine, but I just wanted to mention it.
It’s extremely difficult to care for a family member with dementia, especially FTD.

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#3

I am so sorry for your circumstances. As I am 82 years old, dementia is certainly one of the things that I am afraid of. I have been taking all of the general health supplements that are supposed to be good for the brain etc. The ones I have found particularly effective in my case are:

Ginkgo biloba - Increases blood flow to the brain.

Bacopa monnieri extract. Some studies indicate that it improves memory. It was surprising to me when I first started taking it, it actually started old memories popping up unexpectedly. I really do think it improves the recall of old memories.

Methylene blue. Truly worth a try. It does cross the blood-brain barrier and many studies show that it can improve cognition, plus it has a multitude of other benefits.

These are certainly worth a try if you are not already using them.

Many people who would like to take methylene blue do not do so because they haven’t figured out a way to take it without staining their tongue.

Of course, do your own research.

Here is how to take methylene blue:

Buy USP-grade methylene blue with no additives.

Buy empty 000 size empty capsules.

(The brand of methylene blue that I use comes with a calibrated dropper.)

Open an empty capsule and carefully fill it with 1 ml ethylene blue.

Replace the cap on the capsule

Take within two minutes as the capsule will begin to soften.

Only make one capsule at a time right before you use it.

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http://triggered.stanford.clockss.org/ServeContent?url=http://molinterv.aspetjournals.org%2Fcontent%2F8%2F6%2F268.full

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#4

I’m just sharing information, not necessarily recommending anything

There are mouse studies suggesting that a constituent of Ashwagandha extract may be effective as a treatment for FTD. The compound is Withaferin A. This is an article titled, “Building a Case for Withaferin A as a Treatment for FTD/ALS Syndromes.” The researcher notes that, " Although WFA appears to be orally bioavailable, there is no information on the oral dose that would be required to achieve the same positive effects seen in mice injected intraperitoneally." The oral bioavilability was based on a rat study. A year later, a mouse study was published finding that oral bioavailability was very low in mice, as low as 1.8%. And there is a human trial for cancer that also concluded that, “WA appears to have low oral bioavailability.” This is another paper that goes over the bioavailability data.

Researcher developed an orally available analogue of Withaferin-A called IMS-088. It was tested in an FTD mouse model. The researchers concluded that, “Our study revealed that induction of autophagy reduces TDP-43 pathology and ameliorates the translational defect seen in mice models of ALS/FTD. Based on these results, we suggest IMS-088 and perhaps other inducers of autophagy should be considered as potential therapeutics for neurodegenerative disorders with TDP-43 proteinopathies.”

So, they suggest that this compound and perhaps other “autophagy inducers” may be helpful. Someone brought up methylene blue above. Below is a study suggesting it may specifically be beneficial for this purpose.

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#5

There is some good information on Dr. Green’s Alzheimer’s website.

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#7

Summary of the Discussion:

  1. Genes and genetic testing for FTD: Frontotemporal dementia (FTD) has a strong genetic component, with the main genes responsible being MAPT, GRN, and C9orf72. Genetic testing, such as the Invitae Frontotemporal Dementia Panel, can help confirm a clinical diagnosis, predict disease prognosis and progression, facilitate early detection of symptoms, inform family planning and genetic counseling, and promote enrollment in clinical trials (Source: Invitae Frontotemporal Dementia Panel).
  2. Investigational therapies:a. Rapamycin: Rapamycin, an MTOR inhibitor, has shown potential in the treatment of neurodegenerative diseases, including FTD. However, the provided sources do not directly address the use of rapamycin for FTD, and more research is needed to determine its safety and effectiveness in FTD patients (Source: NCBI).b. Stem cell therapies: Current research on stem cell therapies for FTD primarily focuses on using induced pluripotent stem cells (iPSCs) to study the disease’s underlying mechanisms and develop potential treatments. Researchers have successfully used patient-derived stem cells to model FTD and investigate the effects of novel treatments in the lab (Source: UCSF) Study Director: Bruce Miller, MD - Memory and Aging Center, UCSF. However, more research is needed before stem cell therapies can be considered a viable treatment option for FTD patients.c. Methylene blue: Methylene blue has shown potential in reducing tau levels in neurodegenerative diseases, including FTD. Studies have found that methylene blue reduces tau aggregation and induces autophagy in brain slice cultures, cell models, and transgenic mouse models (Source: NCBI). However, its effectiveness in improving cognitive function seems to be more pronounced when administered before cognitive changes occur (Source: Alzforum). More research is needed to determine the optimal dosing and timing of administration for the best therapeutic outcomes.
  3. Alternative therapies: Alternative therapies for FTD, such as antioxidants and supplements like vitamin E, have limited scientific evidence supporting their use. Some studies suggest they may have potential benefits, but it is essential to consult with a healthcare professional before considering their use (Source: Stanford Healthcare).

Limitations: The current state of research on investigational and alternative therapies for FTD is still in the early stages. While some studies show promise, more research is needed to determine the safety, effectiveness, optimal dosing, and timing of these treatments for FTD patients. It is crucial to seek guidance from a healthcare professional before considering any experimental or alternative therapies.

Please note that the information provided here is a summary of current research and should not be considered medical advice. Consult with a healthcare professional for personalized recommendations and guidance.

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#8

You ,may be 82 but you are sharper than a Swiss knife my friend. I totally doubt that dementia will ever be able to make a home in your sharp brain. Keep up the good work, we need your wisdom in this boards for next 40 years!

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#9

As I have indicated, this is my 2nd family member I have cared for with dementia, so I appreciate the difficulty, BUT in both instances my patients responded to LOVE and familial connection. And admittedly, as a trial lawyer, that was the DIFFICULT part at first. I have gotten over that, thank god quite a while ago, and every day is an adventure. BUT one thing embedded in my brain, if the shoe was on the other foot, my woman would take care of me. We live/walk on a beach, so this is WAAAY better than being stuck in a home.

Yes, she was diagnosed at Scripps Memory Care in La Jolla, CA Dr Jan Nissenin is the Scripps Neurologist,who conducted a LARGE battery of tests including MRI, CT scan etc. conducted in 6/21 from which he drew his diagnosis of BVFTD. And I have had 2nd by Dr Shelby Jordan (Beverly Hills 9/22),(supposedly world renown) who reviewed Nissenen’s tests etc, BUT wanted us to invest $5K to run his OWN MRI, on his own machine…that was not covered by insurance, to confirm. Upon his review of my supplement regime, he claimed I was giving too many (e.g. @ 20); scratched most of mine out and then wrote down 19 that he wanted us to buy thru him, over 50% were the same as what I had been giving her. Seemed odd! And basically undermined his credibility in my eyes; 3rd review was by a young neurologist in Mexico City who was brought in at last minute, after there was a mess up in protocol, long story. He confirmed, but HE TOO wanted us to run a test on HIS MRI, (yet she has had 3 MRIs ( 1 in Ensenada 9/20; 1 in Columbus Ohio 12/20; 1 Scripps (6/21) and 3 CT scans in course of 3 yrs, and all these guys want their own machine? is there REALLY a difference? NOW that doesn’t MEAN i am foreclosed on having a FOURTH opinion~ Not at all! As I have reason to believe there is a slither of hope/possibility that she has been mis-diagnosed~ so I will check Miller out, and thanks

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#10

You SIR, are perhaps the #1 contributor that inspired me to join this forum. I enjoy your candid posts, and hoped you would weigh in, as you are a layperson on your own mission, AND you have done your homework. yes I have her on gingko bilboa, for over a year now (along with 19 other daily supplements). Crossing the BBB has been a constant area of research, especially given the stem cell approach we have pursued, at no small investment of time/resources. I have paid close attention to the discussion of using Rap, to accomplish the same, and your opinion on that. I will check out your other suggestions, i have her on 2 types of mushrooms, one of which i have to incapsulate, so good to go there. I’d love to pick your brain if you are open to it at some point. and thanks for your reply.

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#11

Thank you Vlasko for your contribution. I will check this out. Very appreciated that you took your time to reply.

#12

I have seen some of his information posted online. Thanks for directing me to the his source for this discussion.

#13

ha kudos to this reply SO TRUE

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#14

Have you tried going mostly Keto, or giving exogenous ketones? This would be a very inexpensive test to try.

Do you give chondroitin, glucosamine, MSM with all the juice? It ties up lectins, so should be taken with meals.

I’m a farmer with no expertise at all, just inexpensive ideas to try.

#15

Thank you for this post! w/ regard to #2, as I wrote, my wife has had over 700 million MSC (stem cell) administered over the course of 3 treatments starting last November, This was initiated after over 6 months of extensive research/cross-x of facilities by myself ( i have conducted over 200 courtroom trials and examined hundreds of witnesses under oath) so I assure everyone my scrutiny was quite thorough, and I consider myself, a bit of an “lay expert” in stem cell therapy especially when it comes to the “BS” factor of the clinics/dox promoting their snake oil (passed off as stem cell therapy). BUT her docs in Guadalajara are licensed and signed my contract. (story above); as for Rapa, that is WHY i am here, I am scrutinizing the efficacy and was prepared to join a friend who is actually traveling to Easter Island in 2 months (my original idea, to get to the source). But now not so sure that is necessary or actually helpful, as it does not sound like an organic substance promoted locally; as for Methylene blue THANKS to the Desert Rose and now YOU, this is my #1 thing I will be looking into TODAY!

As far as alternative therapies/supplements, AGAIN we are deep into this, she gets 20 different supplements, and I super hydrate her with 32 oz of coconut water, after she consumes 8 oz of my fresh veggie juice that takes me FOUR HOURS to produce enough quantity for 4 weeks. She has been on the juicing for 5 years, as SOMETHING triggered my concern, a couple months BEFORE she was diagnosed with cancer.

One thing i neglected to mention was I was married once before. Her name was ALSO Diane. Diane I was diagnosed with breast cancer at age 34. She was a stunning owner of a model agency, and came to see me as a lawyer. I immediately referred who to another attorney, as I knew when I met her she was it! But cancer invaded our lives after 5 years. And we went DEEP into alternative therapies, as I sent her to a facility in colorado springs called Health Quarters. I was already a pretty big supplement guy, (another story another day), and she had surgery to remove, but resisted chemo/radiation for awhile but eventually caved. THAT IS WHAT TOOK HER OUT. So i buried her at 36 yo. She made me promise, not to sue the doc who gave her implants 9 mos before she was diagnosed (and didnt see the tumor) AND to marry again asap, and guaranteed she would help me find a new mate. 6 years later, Diane II came in my life. and there is a TRUE connection between the 2 of them I assure everyone. My commitment here is for both of them! As I’ve shared before, THIS AINT MY FIRST RODEO!

The point of this second chapter in the story is that WE DON’T HAVE TIME to wait on "studys and theories, and ongoing trials etc. THE TIME IS NOW! I lost a good # of friends to AIDS, in the 80s, BUT the activism surrounding the issue, ULTIMATELY got lotsa good therapies and some cures. So wassup about AD etc.? anyway, i am on this mission, 2nd time around, maybe 3rd if you include my dad, thanks for your post, i am all other the new BLUE!

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#16

hI AND thank you, I have read up on Keto a little, but it seems to be oriented towards weight/fat, that is not remotely an issue here. furthermore, as i just shared, this is NOT my first spousal catastrophic health situation, wherein I have invested time energy into alternative therapies. Although I appreciate recommendations of alternaive therapies, its quite different when you have to IMPLEMENT them, and then LIVE THAT WAY for the rest of your life. Some things we are doing anyway, others require commitments to “lifestyle” changes that require severe sacrifices to facilitate the dietary goal(s). IMO having looked at these, it becomes a DAILY GRIND attempting to stay on such/such diet and quite honestly can oftentimes be extremely boring consumption wise. THEN you are gambling on a few anecdotal testimonies from others who had great results, but its not totally clear what exactly happened? So then one needs to measure the degradation of quality of life vs. the possibility of improvement from the therapy? is it REALLY worth giving up many of the things you enjoy consuming in life for a bland/tasteless diet, to gain another day/week of life? And when one measures (especially the caregiver, the time, effort, expense, opportunity cost, AND the mediocre life that you must endure to facilitate the diet,…I guess I am not KEEN on such a lifestyle. In the end, I believe life is precious, but I also believe in an after life, so there is a point where it can become POINTLESS!

Not there yet. Yes to gluco/MSM, it is part of the daily supplementation.

and BICEP, thanks for your input. I too am ALSO a farmer (along with the rest) I own a Christmas tree farm in Ohio, for 55 yrs, where I was born/raised. So you my friend are the life blood of USA, you have great insight to what is needed, so keep it coming, thnks for your input!

#17

I wish to THANK all of you who took your time to reply to my post. I have learned a lot. I know it takes time from your schedules to share your thoughts and I truly appreciate all that has been shared. Pls keep it coming and may God Bless.

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#18

That’s why I mentioned exogenous ketones. You can spend $20 on a tub of ketone salts, they’re delicious and it’s possible if her brain switches fuels, then it may start to work better. Ketones cross the BBB without any help.

If it does nothing, or she hates them then you can take it yourself. It’s good for you.

Thanks, good luck…

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#19

OK let me check that out. sounds like a 'no-brainer" so to speak. In either event God knows I eat a LOT of her leftovers! haha thnks my friend.

#20

https://www.amazon.com/Perfect-Keto-Beta-Hydroxybutyrate-Supplement-Performance/dp/B08WBXP8RN/ref=sr_1_5_pp?keywords=exogenous%2Bketones&link_code=qs&qid=1690470555&sourceid=Mozilla-search&sr=8-5&th=1

#21

You know, i just read your post again, about administration, and “staining” the tongue. Don’t know if you have ever “juiced” beets or TUMERIC, but those TOO are crazy/staining “roots”. I ponder whether just 'dropping" this into my daily “witches brew” (carrots, beets, spinach,cucumbers, cranberry, celery, apples, blueberries, ginger root, tumeric, spirulina, 6-8 oz, every day since 2018,) it takes me 4 hours just to clean, prep, cut, then “mulch” each @ 10 lbs of this stuff, thru a champion “juicer”. Produces 2 gallons of brew, that I then divide into 25-30 12-16oz jars. or a month’s supply. SOOO my kitchen, smock, hands and everything else are stained in PURPLE AND YELLOW. I now know how/why Joseph (old testament) got his cloak of many colors! sooo whadya think? rather than encapsulate, just drop/mix the new blue in the “brew” and down the hatch?