Reversing Cognitive Decline

A some point, after relinquishing control over the direction my life was going, I was brought to this place. It’s a clean place, an old adobe guesthouse that I am able to live inside. After being forced to camp over two high desert winters, I relish having hot water, my own bathroom, a couch and a woodstove. I can be cozy and warm again, finally.

Not long after moving in, a book came into my hands. The person who handed it to me, Ellen, deeply needed to understand the contents and wanted my help. The book was “The End of Alzheimer’s– The First Program to Prevent and Reverse Cognitive Decline,” by Dr. Dale Bredesen. The program it laid out was called “The Bredesen Protocol.”

I devoured this book and became really excited when I realized 3 things:

  1. It was a Functional Medicine program, like the one I was using to heal myself. (“The Shoemaker Protocol.”)
  2. “The Bredesen Protocol” includes “The Shoemaker Protocol” in its entirety. Of the six types of Alzheimer’s that Dr. Bredesen identified, the mold-induced type was Type #3. Reversal of Type 3 Alzheimer’s, as it turns out, is my current lifestyle.
  3. My grandmother died of Alzheimer’s, I myself am APOE4 positive, and I have CIRS– a chronic inflammatory disease. That means I had just been handed a strategy to AVOID developing Alzheimer’s myself.

Dr. Bredesen advocates everyone getting a “Cognoscopy” by the age of 50, much like getting a colonoscopy. (For women, this should be done before menopause, which happened for me early, at 46.) The reasoning behind this is that early detection of metabolic and hormonal imbalances that lead to Alzheimer’s can be rectified before they even lead to symptoms of cognitive decline. Since there is a “point of no return” where this protocol can NOT reverse decline, it’s much cheaper and smarter to prevent the decline in the first place.

I am sold on Bredesen’s Approach. Learn more here and here and here. In a nutshell, through his career as a conventional medicine researcher at UCLA, Dr. Bredesen identified 6 types of Alzheimer’s dementia: Hot, Sweet, Cold, Toxic, Vascular and Traumatic. He has applied the fundamentals of Functional Medicine to identify causes of inflammation (infections, autoimmune issues, allergies, etc.), causes of what is essentially diabetes of the brain, “atrophic” factors like low Vit D and low hormone levels that create a “synoclastic” environment in the brain where synapses can’t regenerate, toxins from organic and inorganic chemicals and biotoxins from lyme or mycotoxins, the impacts of vascular disease and head injury on the brain’s ability to heal and regenerate. Through addressing each patients individual challenges, Dr Bredesen has created a targeted, individualized program that works to correct up to 60 imbalances. The reason conventional medicine has failed so abysmally at curing Alzheimer’s is that they are looking for one, single enormous payday through a pharmaceutical monotherapy. SO 20th century.

Over the course of 12 months, I participated as Ellen tried to implement the Bredesen Protocol on her own. She got a little guidance from a Functional Medicine doctor who had heard of the program, but didn’t know how to implement it. She got a smattering of lab tests done and followed the advice on changing her diet, but after plateauing, she began to decline again.

That’s when I decided to officially sign up for the Bredesen Protocol training through the Institute for Functional Medicine. They just started offering the training online and the price to enroll for non-medical practitioners is $1550.

While it has been fascinating learning the clinical approach to this illness, I have found that actually connecting to practitioners who can help us really implement this protocol has been a huge challenge. There are not that many practitioners yet who have taken the training.

We live in a very remote area in the Southwest. We couldn’t even get a list of certified practitioners who were physically in our region (within a 6 hour drive) without signing up for the AHNP program, which just launched, and is clearly still in Beta testing phase. This company has not invested in a User Interface Specialist and seems unaware that it is set up for doctors, but not for patients.

From a patient’s point of view, the logistical tasks of setting up appointments in different cities while cognitively impaired is an impenetrable barrier to entry for most people. These are the steps the patient is required to take AFTER signing up for the AHNP program;

  1. Assemble your own functional medicine team (which always includes at least a doctor and a health coach.)
    1. Find a Bredesen Trained doctor in a city near you. (Some do Telemedicine, but they don’t tell you which ones, and of those who do Telemedicine, some require an in person visit for the initial visit, but they don’t tell you which ones require that. It’s based on state laws.)
    2. Find a Bredesen Trained Health Coach. Most doctors don’t “provide” one, so you have to find one who can work with your doctor. They might be in a different city. You can assume they can do virtual appointments (over the computer) but there are not that many to choose from and who knows if you will like them. You MUST have a health coach, or it won’t work.
  2. Figure out which special laboratory will do the Bredesen Labs for the cognoscopy (usually a LabCorp nearest to you, but preferably one that has worked with the doctor you have chosen so they don’t screw up handling some of the novel labs required.)
  3. Figure out which special radiology clinic will do a volumetric MRI using software like Neuroquant or NeuroReader so that you can provide this to your doctor.

While the AHNP program advises that you can go ahead and get your labwork done before even choosing your doctor, this presupposes that all phlebotomists who work at all LabCorp locations know how to process all Bredesen and Shoemaker labs accurately.

After 3 years of having Labcorp process my CIRS-Shoemaker labs, it is clear that the only labs that do it correctly are the ones that are in constant contact with Shoemaker practitioners. These labs need to be trained on how to process things like TGFB-1 and c4a. You can guarantee they will get it wrong on the first try. The same is true for MRIs.

I was exceedingly lucky that early on in my illness, I got connected with Peg DiTulio, FNP. She is extremely well organized and has a cracker-jack team of administrative assistants. She is also Bredesen trained. But she is on the other side of the country, in New Hampshire, and requires an in-person visit to begin care. Having had her as my first functional medicine provider, however, the bar got set high for what I could expect.

We finally got access to the list of five doctors in our region after joining the AHNP program. We reached out to one practitioner on the list and didn’t hear back for a week. Then we noticed some unfavorable reviews on Google. Two other practitioners appeared from their websites to be “anti-aging” enthusiasts, but didn’t mention the Bredesen Protocol. A fourth seemed young and eager, but had a Google Voice-forwarded phone number and a voice message that appeared to be him talking about himself in the 3rd person, and encouraging us to leave a message. Um…nah.

We wanted an actual doctor’s office with an actual receptionist who answered the phone. We found The Merritt Wellness Center. They were not MDs and therefore had no prescribing rights and would not deign to deal with insurance. It was out-of-pocket or out-of-luck. We spoke with their practice manager, Patrick, about the details of the program. It seemed promising, but also complicated. Picking the doctor was just the beginning!

They have a comprehensive program that included visits with a DOM (Doctor of Oriental Medicine,) a nutritionist and a health coach. First we wanted to know if we could replace their health coach with myself, since I am a health coach, social worker, CIRS survivor AND I’m getting certified in the Bredesen Protocol myself. Nope. We asked if we could choose our own source of supplements since I can get them wholesale. Nope.

OK. Next we learned that we can’t just join their Bredesen Protocol, we need to do a preliminary program, called a NeuroCheck, to determine eligibility for the Bredesen Program. This cost $750 plus another $600 for the special MRI. But still, I am optimistic, because they were one of the first centers in the country to offer Bredesen’s ReCODE (REversal of COgnitive DEcline) program. They already have a track record of success and have 25 other people engaged in this very process right now. Plus, it is smart that they require only an initial commitment to a single appointment to review the MRI and CNS Vitalsigns test. We get to meet them and see how we like them. They get to meet us and assess whether or not we are up for the formidable task of implementing this exacting program over the course of one year.

We were well into the program before realizing that while the practitioners can diagnose and treat on the basis of the ReCode Report, they don’t have access to it unless the patient is signed up through AHNP. This ReCode Report is actually proprietary software developed by Dr. Bredesen himself to synthesize an enormous volume of lab data into usable form. The doctors can’t see it unless the patient has an account with AHNP and chooses the doctor on the AHNP platform.

So far, this has required a lot of woman-hours to just get to the starting gate. I am so thoroughly impressed with the Bredesen Training program through IFM
and the clinical basis for this healing program that I am convinced this will work to restore Ellen’s cognitive functioning. I also have personal and very compelling first-hand experience of recovering my own health (mostly) because I followed the Shoemaker Protocol. (This continues to require that I live in a low humidity area, sleep on a camping mattress and keep hyper-clean, for the moment.)

All told, this program might cost a patient as much as $15,000 for one year. Out. Of. Pocket. But for the price of a car, you could get your life back. It’s a no-brainer, no pun intended. It seems like a daunting amount of money until I think of the $60K-$80K that CIRS has cost me over the last 3 years (not counting lost wages.) There is nothing more expensive than NOT getting connected to the people who can really help you.

I will keep you posted on this amazing process.

 

One Comment on “Reversing Cognitive Decline

  1. Thank you for taking the time to annotate the beginning of your journey. It certainly resonated with my experience, caring for my wife.

    Like

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