RSS Feed Print
Eli Lilly trial protocol number I5T-MC-AACI
Michael Ellenbogen
Posted: Monday, November 9, 2020 1:55 PM
Joined: 11/30/2011
Posts: 3552


Today I went for my first visit for a new clinical trial. I will be tested using the new blood test that checks for TAU. If I make it to the next step, I will get the TAU PET. This should be interesting. Will this be anew chapter in my life again?


Iris L.
Posted: Monday, November 9, 2020 3:34 PM
Joined: 12/15/2011
Posts: 16705


Tauopathies seem to be unlike amyloid-prevalent pathologies.  I hope you will be able to learn some answers, Michael.  


Iris


Michael Ellenbogen
Posted: Wednesday, November 11, 2020 8:28 AM
Joined: 11/30/2011
Posts: 3552


Just for the record it is using Lilly's P-tau217 Blood Test 


Michael Ellenbogen
Posted: Thursday, November 19, 2020 10:48 AM
Joined: 11/30/2011
Posts: 3552


 My Ptau blood test results. It looks like they did not see tau in my blood test. The more we get better science the worse my diagnose becomes. I was rejected to get into the study. So no Amyloid or TAU. I wish I knew what that all means. 


Iris L.
Posted: Thursday, November 19, 2020 8:42 PM
Joined: 12/15/2011
Posts: 16705


Michael, I'm sorry you are disappointed by the results of the test.  Is participation in the clinical trial only for those who are positive for tau?  Does the fact that you have no tau in the blood mean there is no tau in the brain?  Are you ruled out for the tau PET?


It so frustrating, having so many unknowns in one's life.  As for me, I no longer obsess about my diagnosis.  This is because several of my now deceased older relatives had significant cognitive impairment, just like me.  I think I have what they had, even though I don't have a name for it.  I believe it's related to cardiovascular changes.  Thus, I'm going to keep on top of my blood pressure and other cardiac issues, modify my environment the way Alz+ and others recommend, and then embrace the rest of my life.  


Actually, IMO, I think there might be a number of cognitive impairment/dementia patients who do not have classical amyloid-related Alzheimer's disease.  Lane Simonian always posted about other pathologies.   In any case, I have reached the point when I can only deal with so much, mainly my own care and my cats' care.  I don't have the energy to delve into other issues.


I hope you and your wife will be able to enjoy a nice Thanksgiving Day holiday, if you celebrate.  


Iris


Michael Ellenbogen
Posted: Friday, November 20, 2020 6:29 AM
Joined: 11/30/2011
Posts: 3552


I am basically kicked out at this point and unable to go to the next step which was to get the TAU pet. That was the main reason I wanted to get in this trail. I am not sure at this point if the PTAU looks for a specific number or more or if you show any sign of TAU.  Iris I could have excepted all they told me but I never do as the science gets better they are proven wrong. I personally do not care as I know what I have I am Fu??ed up and that is my new medical term. What I keep proving is that no doctor knows what they are talking about and some of them are very smart ones in their field.  While they still stand with their original diagnose, I don’t know yet if this now throws it all out as I am no longer sure what this means.  

 

What is amazing is know one seems to know for sure of what I have other than dementia that is progressively. If I could have still written I could have wrote two more books from the first one. Who else is in my shoes if one goes Tru all I want to do and check out so many test. Its very scary. For many years I thought I was going to die in a few years but I think they are all wrong and I will be around for a dam long time. Just hope I can continue to have my vice and drive. I am okay losing all of the other skills. Just think I am able to do most of this because I have Resources that others do not and I know the most famous scientist.  


Michael Ellenbogen
Posted: Tuesday, November 24, 2020 8:54 AM
Joined: 11/30/2011
Posts: 3552


This was a email from an expert in the field.

 

Thanks for relaying the results of your p-tau blood testing, Michael.

 

Regarding:

It looks like they did not see tau in my blood test...  I was rejected to get into the study.

 

     No surprise there (...especially considering that, given that I relayed to you over four years ago (in July 2016)...

 

...it can be stated unequivocally that you do not have Alzheimer's disease.  

The absence of Alzheimer's disease is clearly documented on your 2006 brain PET scan.  

The absence of Alzheimer's disease is also clearly documented on your 2009 brain PET scan.  

Furthermore, and perhaps most importantly, the absence of Alzheimer's disease is clearly documented by direct comparison (visually and quantitatively, region by region) of your 2006 and 2009 brain PET scans.

...and also given that your PET scans showed no evidence of either an amyloid-driven nor a tau-driven process.  

 

Again, as communicated in 2016, though it is not clear whether you have a (very slowly, given that in the interval between 2006 and 2009 there was "no statistically meaningful change between the two scans in any region of the brain, with even the largest decline between any two anterior temporal regions corresponding to only a fraction of a SD") 

progressive primary neurodegenerative disease of any kind, if there is one that is the cause of both your symptoms and your pattern of cerebral metabolism that have been present for a decade-and-half, it is most consistent with a "TDP-43 ubiquinated proteinopathy" -- not an amyloidopathy or tauopathy (or synucleinopathy).

 

The more we get better science the worse my diagnose becomes

 

     Michael, I don't understand at all the basis for this comment of yours?  (...particularly as the latest science is entirely consistent with the science that revealed your (definitively non-AD/non-"SNAP") pattern of cerebral metabolism 11 and 14 years ago)

 

So no Amyloid or TAU. I wish I knew what that all means.

 

     As your email to me over three years ago (14 months after I sent you our email exchange referenced above) seemed to indicate, you do in fact know "what that all means" (...how willing you are to accept what you already know seems however, to be another matter....)

 

Do I still fall under SNAP knowing that...

 

     SNAP is (and has always been) a fairly meaningless (non-)diagnosis, as alluded to by both Dr. Dickerson and Dr. Rabinovici, in their comments to you that are copied below (...somewhat analogous to the diagnostic qualifier "idiopathic" which really just means that the diagnosis is not any of the other things one might think it could have been, before they were ruled out) -- and, in any event, the pattern of regional cerebral metabolism revealed in your two FDG-PET scans is clearly inconsistent with what most often passes under the label of "SNAP"

 

> ...or still think it can be Semantic Dementia?

 

     Once again, as I related to you in 2016, this is the diagnosis that was most compatible with both your neuropsychologic profile and your pattern of cerebral metabolism for at least a dozen years now, if in fact any primary neurodegenerative disease has been present at all ("...the scans by themselves cannot determine either the presence or absence of a primary neurodegenerative cause for the mild bilateral anterior temporal hypometabolism that is found.  What we can say, is that there is only one neurodegenerative process for which there is a consistent and substantial evidentiary basis for being reflected as isolated anterior temporal hypometabolism, and that is the process underlying semantic dementia")  As far as you have related to me, there does not appear to be any new information that has emerged during the past four to five years to alter those facts... am I missing something here?

  

With Best Regards,

 

Dan


Iris L.
Posted: Tuesday, November 24, 2020 12:34 PM
Joined: 12/15/2011
Posts: 16705


This is very interesting, Michael.  Your expert is confirming that you don't have Alzheimer's Disease due to either amyloid or tau pathology.  Your PET scans show little change between 2006 and 2009, indicating that if you do have a neurodegenertive disease, it is very slowly progressing.  


You might have TDP-43 ubiquinated proteinopathy--something I've never heard of.


He says that the only diagnosis consistent with your symptoms and the isolated hypometabolism found in your temporal lobe(s) is semantic dementia.  


In summary, you don't have Alzheimer's Disease.

You don't have SNAP. 

You might have semantic dementia, very slowly progressing.


I know you complain that you have become slower in the past year or so.  How is the rest of your health?  Are you getting all of your nutrients?  Older adults don't absorb all their nutrients and may need supplements.  


Are you sleeping well?  Could you have sleep apnea?  You won't know without an overnight sleep study.  It's better at a sleep lab, but I know some sleep doctors offers home sleep studies.  Check out all of your health.


Michael, having a specific dementia diagnosis aids in the treatment plan, primarily in regard to which medications might be helpful, and which medications to avoid.  This you can discuss with your prescribers when the possibility of medications comes up.  


Otherise, the treatment is essentially the same for all dementias.  Live healthfully, stay safe, and manage your environment.  A big treatment, not to be discounted, is to avoid stress.  You already know these, Michael.  But I think you may have some trouble with avoiding stress.  You have to seek out a specific stress relief for yourself.  I did, and it worked for me.


I'll mention something your expert didn't mention.  I think some part of dementia is cardiovascularly related.  Keep a close eye on your blood pressure and other cardiovscular modalities.  Keep an eye on your Hemoglobin A1c for diabetes.  Both can cause brain complications.

  1. These are the treatments I am doing for myself.  One might consider them not to be real treatments, but lifestyle changes.  Anyway, I'm doing them, and I have seen positive results.  Keeping an anti-dementia lifestyle is work and a challenge for me, calling for continuous vigilance.  But it's worth it.


(I don't know why the above paragraph has a number.  Perhaps I've written too much.)

Iris


Michael Ellenbogen
Posted: Tuesday, November 24, 2020 4:24 PM
Joined: 11/30/2011
Posts: 3552


This is from a doctor who also does clinical trails. Until now he still insisted, I had AD. Looks like that mind may be changing. 

 

Totally hard to say.  That TDP-43 protein is seen in a bunch of neurologic phenotypes, including hippocampal sclerosis and these semantic diseases.  PTau in blood is not ready for prime time, even if this is a tau disease, the isoforms in AD may differ from other primary tau aggregate isoforms.  Whatever this is, it is slow.  But you escape diagnosis again and again. 

 

 

On Tue, Nov 24, 2020 at 10:03 AM Michael Ellenbogen wrote:

Just wondering on your thoughts at this time. Do you still think I can have Alzheimers since I have no Amyloid or TAU? Are you now leaning at all towards FTD, Semantic dementia.