What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

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Issie
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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

Postby Issie » Thu Jan 17, 2019 9:05 pm

I tried VIP, felt so bad on it. Had more mast cell issues and worse POTS. I did it for 2 months hoping it would get better, but it didn't. So for now, trying to get the MARCONS better and will retry later.

She said I'm in the very hard category with CIRS. It seems to be affecting my brain. I did find out for sure that I DONT have APOE4 genetics. But I have all the bad genetics tested for CIRS. In the very worst way. So we will continue to work on that and the chronic Lyme and fungus found in my blood and thyroid biopsy discovered by Dr. Fry.

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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

Postby Issie » Wed Nov 27, 2019 2:34 pm

Having MCAS issues, I had been using MCAS medicines for a long time. I started feeling they were contributing to my brain issues. My brain, pain and everything is better. Still tweaking a new approach for MCAS. But seeing improvement.

Here is a book on a new, to me approach.

In my quest for WHYS......I was given this information.   Quite different than anything I had ever researched.  And I've researched much over the years.  I'm very complex with Lyme, CIRS, POTS, MCAS, EDS, methylation issues and mitrochondria dysfunction.  So this improvement for me is huge.  

Issie

I was sent a book of a different approach for MCAS and other illnesses.  It is technical and controversial, but fascinating.   I have been off all my MCAS and POTS medicine for almost 2 months now.  I don't have it completely figured out.  But making improvements.   

 

https://drive.google.com/file/d/0BxK4lG ... 1jV1E/view

Issie
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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

Postby Issie » Thu Nov 28, 2019 8:56 am

Just was sent this

This is the article that Ravikovitch tried to publish in the 90s about his treatment (it appears at the end of the book) and rejected by the well-known UK immunologist S.T. Holgate. It is a summary of the content of the book for those who do not feel like reading the entire book.

https://drive.google.com/open?id=1qkm0o ... dKR9HkxCj6

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Julie G
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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

Postby Julie G » Sat Nov 30, 2019 4:20 am

I was sent a book of a different approach for MCAS and other illnesses. It is technical and controversial, but fascinating. I have been off all my MCAS and POTS medicine for almost 2 months now. I don't have it completely figured out. But making improvements.

Hi issie! Thanks for sharing. I have lots of questions. :D So, if I understand correctly, for those with traditional IgE mediated allergies, histamine phosphate is used (as a therapeutic) in place of graduating amounts of the allergen? It seems like you'd have to work with an allergist who's familiar with this approach, correct? Is the amount of histamine slowly titrated up? Is it only available in an injectable form or is there a pill or capsule? I'm so happy this is working for you, but I wonder how effective this might be for someone with true MCA? For instance, I have no documented IgE mediated allergies, just overly reactive mast cells.

FWIW, as I've worked on optimizing my overall health (gut especially), my MCA has radically improved as well. That said, I'm still taking a daily zyrtec and singulair (small potatoes compared to my worst!) and would love to wean off.

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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

Postby circular » Sun Dec 01, 2019 9:04 am

Julie G wrote:FWIW, as I've worked on optimizing my overall health (gut especially), my MCA has radically improved as well. That said, I'm still taking a daily zyrtec and singulair (small potatoes compared to my worst!) and would love to wean off.

Hi Julie! Experimental thought here: have you ever tried Ketotifen (compounded)? I think you know this, but it's a first gen antihistamine that's either not at all or far less anticholinergic than other first gen antihistamines. I found the material on that question confusing, but I don't tolerate anticholinergics at all, not even at the reduced level in the second gen antihistamines like Zyrtec and Singulair, but I could tolerate Ketotifen. I bring this up because it's also a mast cell stabilizer. I wonder if my use of it for a time helped sort of reset my mast cells by chilling them out in a way that the second gen antihistamines might not do. Entirely hypothetical ... but I haven't needed any sort of antihistamine for a very long time now.

What are your continuing MCAS symptoms if you don't take the antihistamines?
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

Postby Julie G » Sun Dec 01, 2019 11:25 am

What are your continuing MCAS symptoms if you don't take the antihistamines?

Hi Circ! No, I've never tried mast cell stabilizers and probably should. As you might recall, Rudy Tanzi found that another mast cell stabilzer, sodium cromolyn stabilized abeta "in a dish" and prevented tau tangles. So, your recommendation is a good one, especially given our focus. Is ketotifen the only MCAS med you take? Who prescribes it for you? Has it halted symptoms? FWIW, if I don't take my zyrtec and singulair, I get very traditional allergy and asthma symptoms, running nose, post nasal drip, and chest tightness.

Izzie's links have taken me down some interesting rabbit holes. I recall several allergy skin tests where I didn't react to histamine (despite no antihistamines onboard and loads of symptoms) leading me to wonder if my symptoms are modulated by a different mechanism, like cell mediated immunity. I'm also negative for all allergy testing. Bizarre.

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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

Postby circular » Sun Dec 01, 2019 1:23 pm

Issie wrote:I tried VIP, felt so bad on it. Had more mast cell issues

This was my experience too. I admire how long you stuck with it! I think I lasted two days and quit and have never gone back. I've been so much more stable I may try it again.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

Postby circular » Sun Dec 01, 2019 1:51 pm

Julie G wrote:
What are your continuing MCAS symptoms if you don't take the antihistamines?

Hi Circ! No, I've never tried mast cell stabilizers and probably should. As you might recall, Rudy Tanzi found that another mast cell stabilzer, sodium cromolyn stabilized abeta "in a dish" and prevented tau tangles. So, your recommendation is a good one, especially given our focus.

Yes I do recall that. After that news came out I tried using NasalCrom spray but it dried out my sinuses too much to continue with. Maybe I should use it along with some nasal aloe spray first, but they might just stick together and do nothing.
Julie G wrote:Is ketotifen the only MCAS med you take? Who prescribes it for you? Has it halted symptoms? FWIW, if I don't take my zyrtec and singulair, I get very traditional allergy and asthma symptoms, running nose, post nasal drip, and chest tightness.

Actually I haven't taken any MCAS meds for a very long time. I think after I addressed the MARCoNS to the extent possible everything calmed down. Oh ya, and my repeating eczema went away about them too. I read that staph can cause eczema, and since I had staph colonization in my sinuses it made sense that might be the cause of my eczema too, so I switched to use only Mother Dirt shampoo in the shower, nothing else, and avoid body products with preservatives that kill the healthy skin biome. This seemed to stop the eczema in its tracks.

But I do now I still have some MCAS that can be triggered. For example on Thanksgiving I had two blue corn tamales with corn and squash inside -- a lectin nightmare -- that I pressure cooked, fantasizing it would kill any lectins :lol: . Within half and hour my legs and belly were flushed from histamine.

I got my internist at the time to prescribe the ketotifen (!) through a local compounder that billed my insurance (!). They were capsules.
Julie G wrote:Izzie's links have taken me down some interesting rabbit holes. I recall several allergy skin tests where I didn't react to histamine (despite no antihistamines onboard and loads of symptoms) leading me to wonder if my symptoms are modulated by a different mechanism, like cell mediated immunity. I'm also negative for all allergy testing. Bizarre.

Do you mean that you didn't react to histamine or that you didn't have a histamine reaction to allergens?

Hmmm, assuming no histamine after allergen exposure, or even no reaction to histamine itself (?), I don't think of this as bizarre at all, but rather the very description of non-allergic mast cell activation, where perhaps your mast cells are spewing others of the over 200 non-histamine chemicals they can release? Maybe I'm missing something there.

I think focusing on mast cell stabilization is the way to go if possible? Another thing you can try is Dr. Theoharides' NeuroProtek? Some people are sensitive to it and others not. There's a low or no polyphenol version some use.

I also find salicylate overload mimics or causes MCAS in me, which includes avocados, olives and blueberries! But lately I'm also tolerating salicylates much better! I have been amazed to be spicing my morning coffee with cardamom, cinnamon and ginger without issues! Cinnamon was always been horrible for me during my CFS/MCAS years.

All that said, this weekend I've filled my bucket a bit much and need to get strict and back to where I was before it.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

Postby circular » Sun Dec 01, 2019 1:55 pm

Julie G wrote:Izzie's links have taken me down some interesting rabbit holes...

Don't mean to discount this, just not focusing on that rabbit hole it at present ;)
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

Postby Issie » Sun Dec 01, 2019 1:56 pm

Julie, I have MCAS too and not Ige tested response. If you read the book it will answer a whole bunch of questions for you. I'm off all my MCAS and POTS medicines for 2 months now. I have been hospitalized in ICU for MCAS. So being off everything is amazing for me. My brain function has improved dramatically. And my pain isn't any worse off things. Histamine actually affects the Autoimmune System and Inflammation. It turns on Suppressor T Cells that help inflammation. And histamine is needed to trigger that. I worry what I may have done being on antihistamines for over 8 years non stop, out of ignorance. I did further research and histamine is being used to treat ALS, leukemia, cancer, MS and other things. It's a work in progress, but there is progress.


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