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 » Sun Sep 23, 2018 1:53 pm

Slacker, I guess I'm so used to other forums, I'm on, knowing what EDS (Ehlers Danlos), MCAS (mast cell activation disorder) and POTS (postural orthostatic tachycardia syndrome) are. Thanks for pointing those out to others.

Yes, lots going on. But I've been on a long journey/quest to figure them all out and actually am much better than I was. Most all my things are genetic related. It is in my family and goes way back.

My 23&me was a No call on APOE. But my sisters was positive, as was her sons. Both my parents died with dementia. I was their caregiver and have seen first hand what a long, drawn out decline it is. I don't want that for myself. Determined to find a WHY and then a WHAT to do about it. Just the treatments for Lyme and CIRS (Chronic Inflammatory Response Syndrome - related to mold and biotoxin exposure) has made a difference for me.

Ive known Julie G for about 10 years. We were on a POTS forum together when I first got some of my DX. She helped many of us discover MCAS and get help for it. That was a turning point for me. Went from bed bound and chair bound to having more productive life and traveling again. I'm not that old for a brain issue - younger than 60. But have had brain issues for awhile. Always blamed it on lack of blood flow and oxygen to brain due to POTS. But with discovery and lots of research have found many more pieces of my puzzle. Now.....trying to get on top of this brain atrophy thing. My doc says VIP spray will help. They have reversed brain atrophy with it in CIRS patients. But.......you can't use it until MARCONS is gone.

Issie

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

Postby circular » Sun Sep 23, 2018 7:22 pm

Issie wrote:Ive known Julie G for about 10 years. We were on a POTS forum together when I first got some of my DX. She helped many of us discover MCAS and get help for it.

That's our Julie! I may know you too, but not from a POTS forum. I'm guessing you were on other forums covering EDS/MCAS/POTS and similar garbage :D
Issie wrote:My doc says VIP spray will help. They have reversed brain atrophy with it in CIRS patients. But.......you can't use it until MARCONS is gone.

I'm not a health care practitioner of any sort, and a bit on the rebellious side ... I say do the best you can with MARCoNS and if you're still testing positive have a go at VIP anyway while continuing to work on the MARCoNS! What are you doing for MARCoNS? I was using BEG and colloidal silver, but still having issues showing up on cultures. I'm now using a Biocidin nasal spray I made. Overall I'm doing much better, but still have a tendency to inflamed sinuses at times.

Last spring I tried VIP and I actually had a major mast cell type of reaction to it, on a scale I haven't experienced in a matter of years now, so I stopped and started the Biocidin nasal spray. I'm going to try the VIP again soon but go in super slowly. When you get to VIP you might start really slowly too.

I'm currently rebelling against the notion that I require expensive and invasive dental treatments to cure the MARCoNS and avoid Alzheimer's. It's also a matter of not wanting the risk of TMJ problems getting worse from the ozone injections, as has happened with at least one dental patient. I brush my teeth with Biocidin drops on the brush and chew dental probiotics in hopes it will help balance my oral, nasal and throat flora, but the joke will probably be on me.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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

Postby Issie » Sun Sep 23, 2018 8:02 pm

There is a Dr. GING that makes a powder that you can put along your gum line and it is helping with cavatations. It's called Oral Health. My doc told me about it. Another well known Lyme doc is using it in his patients too. Says we can avoid surgery with it. You can look him up on internet. He is a Acupuncturist. You have to order direct from him. He will give you his phone number as he wants to decide if it's right for you before he will send it.

I couldn't use the antibiotic sprays for MARCONS. I was very unfortunate that it caused irreversible ear ringing. Then we used silver with EDTA, that didn't work. Now we are using our own concoction, that I made up and we will see. I've never had any of the others break things loose like this does. I'm about to start my 2nd bottle. But I'm not telling yet what it is, as I'm the guinea pig. But it seems to be helping.

As for VIP, I'm somewhat afraid to try it. I don't do well on anything that is in the glatamate/GABA channels. Everything paradoxes with me and does opposite of what it should. I've also found glycine and things related do create a major Mast cell response. (Glycine is a natural form of or creates VIP. But, with me it went into glutamate and created a sympathetic response and not a calming GABA (parasympathetic ) response as it should have.) The VIP has strong potential for both things to happen. My doc wants my brain better - but we don't want my POTS or MCAS worse. Can't do VIP before MARCONS is gone. Won't work - waste of money. So have to get MARCONS gone first and then I'll make a decision on that. Dr. Ackerly is using it even with us Hyper responders. Just have to go way lower and slower. My doc is a Shoemaker trained doc. Her name is Dr. Jennifer Smith. She does phone consults. Tell her you heard about her from me.

Actually, didn't do much on MCAS or EDS forums. Mostly on POTS and CFS forums. Now not doing many forums at all. Just happened on this and started reading and thought I may get some more answers here. I'm so much better than I was. Was really shocked when my Neuro Quant was worse.

Issie

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

Postby circular » Sun Sep 23, 2018 8:58 pm

Issie wrote:There is a Dr. GING that makes a powder that you can put along your gum line and it is helping with cavatations. It's called Oral Health. My doc told me about it. Another well known Lyme doc is using it in his patients too. Says we can avoid surgery with it. You can look him up on internet. He is a Acupuncturist. You have to order direct from him. He will give you his phone number as he wants to decide if it's right for you before he will send it.

Thanks for this info. I'll see how things go with the MARCoNS using the Biocidin first and then if I'm not getting anywhere I'll try the powder.
Issie wrote:I couldn't use the antibiotic sprays for MARCONS. I was very unfortunate that it caused irreversible ear ringing.

Oh. my. gosh. I'm sorry to hear that. I've had chronic ringing for over 30 years, and it just gets worse as time goes on. Hopefully yours will eventually subside. There are lists of ototoxic medications worth keeping on hand for any time you can avoid them.
Issie wrote:Then we used silver with EDTA, that didn't work. Now we are using our own concoction, that I made up and we will see. I've never had any of the others break things loose like this does. I'm about to start my 2nd bottle. But I'm not telling yet what it is, as I'm the guinea pig. But it seems to be helping.

Great to hear! I look forward to learning more when you can share.
Issie wrote:As for VIP, I'm somewhat afraid to try it. I don't do well on anything that is in the glatamate/GABA channels. Everything paradoxes with me and does opposite of what it should. I've also found glycine and things related do create a major Mast cell response. (Glycine is a natural form of or creates VIP. But, with me it went into glutamate and created a sympathetic response and not a calming GABA (parasympathetic ) response as it should have.) The VIP has strong potential for both things to happen. My doc wants my brain better - but we don't want my POTS or MCAS worse. Can't do VIP before MARCONS is gone. Won't work - waste of money.

Interesting about the glutamate/GABA channels and glycine. I'll have to look into that. What I'm wondering is what people mean when they say VIP won't work until MARCoNS is eradicated. Do they mean symptoms won't improve, which would make sense, or do they mean they have done followup NeuroQuants and the volumetrics don't improve regardless of whether the MARCoNS remains. In other words I'm wondering if using VIP while having MARCoNS may start helping the brain even before sinus symptoms have improved. Without a trove of followup MRIs we don't really know?
Issie wrote:I'm so much better than I was. Was really shocked when my Neuro Quant was worse.

:-( I don't blame you. Have you been able to work on increasing your BDNF and NGF with exercise, saunas, meditation, Lion's Mane or other ways? I found exercise and saunas to be impossible when I had MCAS. I still struggle with getting sufficient exercise because of EDS, and I don't trust the only gym sauna available not to infect me with more problems, but I have no obstacles to meditating or using Lion's Mane and do what I can for exercise.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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

Postby Issie » Sun Sep 23, 2018 10:08 pm

My doc just told me VIP wouldn't work/help if you still have MARCONS. Since she is trained in this - I trust she knows. I never looked into the science of why this would be the case. I'm not sure I want to take it any way.

MARCONS isn't just a sinus problem. This antibiotic resistant staph is probably systemic. They just test it in the sinus. What we are using in my spray - I also use orally. Im doing much better since starting this.

BDNF and NGF - these two things are new to me. I just heard them on the Alzheimer webinar that is going on right now. I don't think I'm addressing them enough either. With POTS and inability to be upright/standing for too long and EDS - exercise is a problem. However, I'm walking and aiming for 6,000 steps a day. Make it and more some days. Other days are "have a cup of tea and get feet up" days. ( If you have POTS - you know what I'm talking about. ) POTS in itself seems to have all the definitions of causing brain issues. And they say it won't kill us......Ha! :( One thing I've found I can do -Planet Fitness has a cubicle (can't think of name - Angel something) that you go in and it has a shake plate and infared lights. You stand in it and, if you can last, it's 12 minutes long. You can increase the shake. It helps with lymph drainage and it actually exercises your whole body. It heats up, like a dry sauna. You get the benefit of infared that helps with pain with EDS and FMS. I find it to be great.

Lions Mane, my sis and I were just debating if those with CIRS and mold issues can take it. We have to avoid molds like a plague. Would this create more issues with us? We can't throw off molds or biotoxins. My sis just bought some and now we don't know if she should take it.

Issie

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

Postby circular » Sun Sep 23, 2018 10:31 pm

I wonder if you're aware there is a group of Shoemaker trained physicians who formed their own group, because while they recognize his contributions, they also came to believe that he wasn't scientific and flexible enough given new experiences as the patient load has expanded so much. Not to say who's right and who's wrong among practitioners, but just as an FYI if you haven't heard of this group: The International Society for Environmentally Acquired Illness

That's a good point about MARCoNS being systemic. I had also begun having frequent eczema rashes. Then I read that some researchers had found that staph was involved. So I immediately stopped all my skin products and switched to Mother Dirt shampoo and a fermented soap to revive a healthier skin biome. I've never since had another eczema rash.

I understand about exercise. So frustrating! I'm lucky not to have POTS though, and I've improved a lot as well overall, so I can do more exercise than I was, just not what and as much as I'd like and feel I need for optimal brain health.

I have also wondered about the mushrooms. I've gone from being someone who could barely eat anything and was really sick for many years, to not feeling sick all the time and eating a lot of things I couldn't before. I don't have any major reactions to taking some Lion's Mane and other mushroom powders, but if I used them in large quantities I might. I'm not sure if [url=fungi.html]this page[/url] will help.
There are many different forms of Fungi, including, but not limited to:

mushrooms1,
molds,
yeast,
lichen,
rusts, and
truffles.
...

There are over 200,000 fungal species and they make up a quarter of the biomass of the earth. There are 100,000 genera of the mold species, but only approximately 80 genera are known to cause illness. Molds, however, comprise most indoor air pollution sickness. Once mold growth has started, each mold colony (mycelium) produces millions of microscopic spores within a few days.

Fungi are divided into four main groups:

Phycomycetes or Rhizopors (black brad mold)
Ascomycetes including Penicillium and yeast
Basidiomycetes which are mushrooms, and
Fungi imperfecti, which include the Aspergillus and some Penicillium species.
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 TheBrain » Mon Sep 24, 2018 6:19 am

Does anyone know which brain structures VIP can (hopefully) restore volume to? I’ve heard of the basal ganglia, but that’s not where my atrophy is (except for one side of the pallidum, which is possibly due to a stroke I had at age 2, per Dr. Ackerley).

My local FM practitioner doesn’t feel comfortable prescribing VIP. If my next urine mycotoxins test shows I’m ready for VIP, I’ll have to go to the very expensive Sonia Rapaport, who is part of ISEAI. The first appointment costs $1600, and that wil hurt. Follow-up appointments are $420 per hour, but they are prorated. If the appointment lasts only 30 minutes, it would cost half that.

I hadn’t heard of the VIP issue with glutamate and sympathetic activation. I tend toward that pathway.

But Dr. Ackerley recommended I try VIP for at least 3 months (even with my blood level of VIP being in the normal Shoemaker range). Dr. Bredesen recommends at least 6 months of VIP for those with CIRS, when they are at the stage where they are ready for it.
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!

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

Postby Issie » Tue Sep 25, 2018 12:29 am

I am aware of the new group. But, I trust my doc. Dr. Jennifer Smith. She also has trained with other docs other than Shoemaker. She has such an amazing mind. She can address more than just CIRS and Lyme. She is, basically, my primary. Though she doesn't take insurance. She is a Naturopath. She is in Scottsdale, AZ. I'm very complex and she helps me manage it all. We brainstorm together. It's a team approach.

Issie

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

Postby circular » Tue Sep 25, 2018 10:52 am

TheBrain wrote:My local FM practitioner doesn’t feel comfortable prescribing VIP. If my next urine mycotoxins test shows I’m ready for VIP, I’ll have to go to the very expensive Sonia Rapaport, who is part of ISEAI. The first appointment costs $1600, and that wil hurt. Follow-up appointments are $420 per hour, but they are prorated. If the appointment lasts only 30 minutes, it would cost half that...

But Dr. Ackerley recommended I try VIP for at least 3 months (even with my blood level of VIP being in the normal Shoemaker range). Dr. Bredesen recommends at least 6 months of VIP for those with CIRS, when they are at the stage where they are ready for it.

Is there any way Dr. Ackerley can prescribe the VIP for you since you have consulted with her online (before, I gather, she stopped doing this). Maybe there are regulations that prevent that since you're in different states. Just wondering. I sympathize with the unbelievably high expenses of trying to restore our bodies integrity.
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 » Tue Sep 25, 2018 10:53 am

Issie wrote:I am aware of the new group. But, I trust my doc. Dr. Jennifer Smith. She also has trained with other docs other than Shoemaker. She has such an amazing mind. She can address more than just CIRS and Lyme. She is, basically, my primary. Though she doesn't take insurance. She is a Naturopath. She is in Scottsdale, AZ. I'm very complex and she helps me manage it all. We brainstorm together. It's a team approach.

Issie

She sounds fabulous Issie! A keeper!
ApoE 3/4 > Thanks in advance for any responses made to my posts.


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