Neurologist's reaction to NeuroQuant results

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
User avatar
seaweed
Contributor
Contributor
Posts: 49
Joined: Wed Mar 21, 2018 10:15 am
Location: Los Angeles, CA
Contact:

Neurologist's reaction to NeuroQuant results

Postby seaweed » Fri Jun 01, 2018 7:44 pm

A Shoemaker mold protocol doctor ordered a NQ MRI for me. He wasn't sure how to interpret the results because it didn't look like a classic "mold brain." My results were:

Hippocampal volume: 14th percentile
Hippocampal occupancy: 2nd percentile
Inferior lateral ventricles: 96th percentile

I went to see a neurologist who had evaluated me after a TBI in 2013, since he would have an MRI to compare this recent one to. He basically said he was very concerned about the size of my hippocampus and wrote me a prescription for Aricept. I am only 38 years old.

He is not familiar with Bredesen's work or the ReCODE protocol. I should be getting a second opinion from a Bredesen trained doctor, right?

Any advice is much appreciated!
4/4 & CIRS (lyme + mold)

User avatar
Julie G
Mod
Mod
Posts: 8707
Joined: Sat Oct 26, 2013 6:36 pm

Re: Neurologist's reaction to NeuroQuant results

Postby Julie G » Fri Jun 01, 2018 9:20 pm

I like your plan to get a second opinion, seaweed. I also think it’s a really good idea to begin working with a Bredesen trained doctor. One of Dr. Bredesen’s most dramatic turnarounds involved a hippocampal volume increase from the 17th percentile to the 75th percentile. Neurogenesis is real. Find what’s driving your pathology and begin working the program as soon as you can. Sending good energy your way. xo

User avatar
Stavia
Mod
Mod
Posts: 5265
Joined: Tue Apr 29, 2014 6:47 pm
Location: Middle Earth

Re: Neurologist's reaction to NeuroQuant results

Postby Stavia » Sat Jun 02, 2018 12:30 am

Its crazy to prescribe Aricept on a scan result. Sounds like a cowboy*. Second opinion absolutely.


* medical slang for a doctor who rushes into aggressive unnecessary treatment with little thought.

User avatar
Julie G
Mod
Mod
Posts: 8707
Joined: Sat Oct 26, 2013 6:36 pm

Re: Neurologist's reaction to NeuroQuant results

Postby Julie G » Sat Jun 02, 2018 7:16 am

I agree with Stavia that the prescribing of Aricept is concerning, especially given your age. Aricept increases the level of acetylcholine, a neurotransmitter, in the brain temporarily improving function and alleviating symptoms of cognitive decline. The bad news is that effect isn’t sustainable, and the brain gets acclimated to higher levels making it VERY difficult to wean off. Definitely get a second opinion.

User avatar
TheBrain
Senior Contributor
Senior Contributor
Posts: 1381
Joined: Fri Oct 03, 2014 12:12 pm

Re: Neurologist's reaction to NeuroQuant results

Postby TheBrain » Sat Jun 02, 2018 7:41 am

Seaweed, I agree with Julie and Stavia on getting a second opinion from a Bredesen-trained doctor.

I gather from what you wrote that your NeuroQuant results didn’t show the “classic” pattern of atrophy in the basal ganglia that Dr. Shoemaker expects to see in a person with mold illness. If you don’t mind me asking, is that the case? Based on my experience, the lack of this pattern doesn’t necessarily mean a person doesn’t have mold illness. I wonder if your hippocampus is low in volume precisely because you have mold and Lyme, as you mention in your signature line. Of course, a Bredesen-trained doctor can investigate what’s going on in your case, perhaps in coordination with your mold doctor.

I recently had a consultation via Skype with Dr. Mary Ackerley to get an interpretation of my NeuroQuant results. She is Shoemaker trained but is now part of the new organization that has formed called ISEAI (International Society for Environmentally Acquired Illness). I have been told that she is one of the best at interpreting NeuroQuant results.

I don’t know about the other doctors in this new organization, but Dr. Ackerley told me that when she started seeing patients’ Triage Brain Atrophy Reports (which came with NeuroQuant 2.0), she found that the Shoemaker scoring for mold vs. Lyme was off. For example, per the Shoemaker scoring, my caudate is atrophied, which would support the fact that I have mold illness. However, when compared to gender- and age-matched controls, my caudate is in the 87th percentile on the left side and in the 91st percentile on the right side. Obviously, I don’t have atrophy there. Dr. Ackerley no longer uses the Shoemaker scoring.

Instead, Dr. Ackerley looks at a patient’s history, symptoms, labs, and she is finding the urine mycotoxins testing to be accurate. She will be (or already has) started to using this testing in her practice. She also looks at MRI radiology reports for mentions of the presence of white matter hypertensities, which, in her experience, indicate mold, Lyme, migraine headaches, or sleep apnea. She said these are especially concerning because they point to leaky brain.

For my consultation, Dr. Ackerley looked at all the brain structures reported on and discusssed my areas of atrophy and asymmetry (between the left and right sides of a particular structure) and possible reasons why, given what she knows about these structures and my history. The consultation was quite informative and went way beyond mold, and I came away with action steps.

I have noticed that Shoemaker-trained doctors who are now part of ISEAI are no longer listed on Dr. Shoemaker’s site as certified practitioners. It looks like they have left the nest.
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!

User avatar
seaweed
Contributor
Contributor
Posts: 49
Joined: Wed Mar 21, 2018 10:15 am
Location: Los Angeles, CA
Contact:

Re: Neurologist's reaction to NeuroQuant results

Postby seaweed » Tue Jun 05, 2018 6:56 am

TheBrain wrote:
I gather from what you wrote that your NeuroQuant results didn’t show the “classic” pattern of atrophy in the basal ganglia that Dr. Shoemaker expects to see in a person with mold illness. If you don’t mind me asking, is that the case?


That's correct. I didn't have the classic "mold brain", and my mold doctor said he wasn't sure what to make of my MRI. He said he'd never seen a brain like mine. I still was diagnosed with mold/CIRS due to my lab results and visual contrast test. I also have visible mold growing in my house & am 11-3-52b.
4/4 & CIRS (lyme + mold)

User avatar
TheBrain
Senior Contributor
Senior Contributor
Posts: 1381
Joined: Fri Oct 03, 2014 12:12 pm

Re: Neurologist's reaction to NeuroQuant results

Postby TheBrain » Tue Jun 05, 2018 11:19 am

seaweed wrote:I still was diagnosed with mold/CIRS due to my lab results and visual contrast test. I also have visible mold growing in my house & am 11-3-52b.


I'm glad you were still diagnosed with mold/CIRS due to other testing. But I'm sorry to hear that you have visible mold growing in your home and that you have one of those multisusceptible haplotypes.

We do have some threads related specifically to mold: Mold and mycotoxins and Mold remediation experiences. Please feel free to read them and post your questions and experiences, if you feel so inclined. Of course, we also have our massive thread Chronic Inflammation as a contributor to Alzheimer’s, which you might already be aware of. Lastly, I have mostly been sharing my personal journey with mold illness in the thread My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory.

I wish you the best of luck on your mold/CIRS journey. And good luck getting a second opinion from a Bredesen-trained doctor.
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!

User avatar
Brian4
Senior Contributor
Senior Contributor
Posts: 149
Joined: Sun Aug 20, 2017 4:21 pm
Location: Boston, US

Re: Neurologist's reaction to NeuroQuant results

Postby Brian4 » Tue May 11, 2021 12:54 pm

Hippocampal volume: 12th percentile
Hippocampal occupancy: 2nd percentile
Inferior lateral ventricles: 96th percentile

Dear Seaweed,

I hope you got a second opinion, and I hope you got some non-Cowboy care.

I've been experiencing some mildly worrying symptoms (which are most likely worsened CFS/ME, or the consequences of living in lockdown, but hard to be certain), so I had a NeuroQuant scan and analysis done – at BodyView in Florida. I have a small (age-adjusted) hippocampus like you, but my other measures are totally different, suggesting pretty strongly that I was born that way:

Hippocampal volume: 14th percentile
Hippocampal occupancy: 85th percentile
Inferior lateral ventricles: 5th percentile

On the bright side for you, your hippocampus has room to grow! Myself, I'm stuck with what I have.

Warmly,
Brian


Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 10 guests