Webcasts with Dr. Ackerley about how mold/CIRS affects the brain

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circular
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Webcasts with Dr. Ackerley about how mold/CIRS affects the brain

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I don't think there have been any online ~casts with Dr. Ackerley posted. I found 'Brain Changes in Mold Illness with Dr. Ackerley' to be really helpful with respect to CIRS and mold and the brain. Dr. Ackerley is a psychiatrist trained at Harvard and Johns Hopkins who now practices integrative medicine in patients with brain issues (broad spectrum I think, including mold and CIRS). She's trained with Dr. Shoemaker but brings her own experience and wisdom with respect to brain health to the table. She also sees patients using the web/phone. I plan to listen to this one again.
Last edited by circular on Wed May 16, 2018 6:51 pm, edited 1 time in total.
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Re: Webcast with Dr. Ackerley about how mold/CIRS affects the brain

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Tonight I stumbled on another, maybe even better, interview of Dr. Ackerley at the Better Health Guy's website. This is quite a thorough interview. The more I hear of her the more I like her. There are many takeaways here, but one I really like is getting away from "protocols" and more in to "decision trees." She talks about mast cells in a very helpful way, touches on hypermobility (not enough on that), and generally covers a lot of ground.

Episode #49: Brain on Fire with Dr. Mary Ackerley, MD
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Re: Webcast with Dr. Ackerley about how mold/CIRS affects the brain

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circular wrote:Tonight I stumbled on another, maybe even better, interview of Dr. Ackerley at the Better Health Guy's website. This is quite a thorough interview. The more I hear of her the more I like her.
Hey Circ;
For some reason I though you consulted with her? True or not? (Hallucination or not?) :?
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Re: Webcast with Dr. Ackerley about how mold/CIRS affects the brain

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slacker wrote: For some reason I though you consulted with her? True or not? (Hallucination or not?) :?
Yes, she does Skype sessions, so one doesn't need to live where she does. I really wasn't very familiar with her when I started consulting with her. I just knew she would help sort out chronic fatigue and was part of the mold illness 'world'. I also liked that she has a lot of classical medical training to bring to this emerging panorama of functional medicine overwhelm, which seems to come with a lack of much evidence-based foundation as yet (?). So even though I've been working with her, hearing these lengthy, online interviews allows me to learn so much more and to see how she -- with all her experience and knowledge -- straddles the worlds, which is something I'm always trying to do.
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Re: Webcast with Dr. Ackerley about how mold/CIRS affects the brain

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WOW, what an excellent podcast. It caused several of my worlds to collide... in a good way ;). I highly recommend a listen for anyone dealing with chronic fatigue, mast cell activation, depression, or anxiety. As mental health professional, I've long suspected that most psychiatric pathology is really unrecognized very real physiological issues. Dr. Ackerly very succinctly makes that point in this long (1.5 hour) in depth interview. The mast cell/histamine part starts around the 59 minute mark. She matter-of-factly mentioned that MCA, hypermobility (Ehlers-Danlos & other connective tissue disorders) and autonomic dysfunction (POTS, NMH, etc.) are often seen together. I was one of the very early patient advocates who brought that to the attention of academia by spearheading research and other activism. Very cool to see that "accepted" among so many practitioners now.

I was extraordinarily impressed with Dr. Ackerly. She's appropriately skeptical (data driven), pragmatic, and has learned and grown as a physician by believing her patients with chronic, complex, illnesses. You're very lucky to have her on your team, Circ. For me, the very end of the podcast is the most important, where Dr. Ackerly speaks of her own practices to stay healthy. I suspect that most of us CIRS folks aren't utilizing the inner work (meditation, retraining the amygdyla, etc.) that is just as powerful as chasing all of the other expensive tests. We have tremendous inner power to quiet the inflammation. That said, I'm struggling to find time to meditate twice a day. What little I've done has made a huge difference for me.
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Re: Webcast with Dr. Ackerley about how mold/CIRS affects the brain

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Julie thank you for taking the time to listen and describe this. Because I see her, I felt that if I were too enthusiastic it might not be seen as very objective of me. While listening I thought of you, and our early days with the research you spearheaded (wonder where that stands now?). I made sure to add MCAS and hypermobility to my post in hopes that you would take note and listen, because I know you're very busy and likely quiet selective, but I can't "tag" you in a post. Seems to have worked ;) :D 8-)
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Re: Webcast with Dr. Ackerley about how mold/CIRS affects the brain

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"It caused several of my worlds to collide... in a good way ;)."

I had the same reaction. I get it!
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Re: Webcast with Dr. Ackerley about how mold/CIRS affects the brain

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Julie G wrote:For me, the very end of the podcast is the most important, where Dr. Ackerly speaks of her own practices to stay healthy. I suspect that most of us CIRS folks aren't utilizing the inner work (meditation, retraining the amygdyla, etc.) that is just as powerful as chasing all of the other expensive tests. We have tremendous inner power to quiet the inflammation.
Thanks Julie for adding this - I missed it, perhaps a tad brain dead by the end of 90 minutes! :?
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Re: Webcast with Dr. Ackerley about how mold/CIRS affects the brain

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I had the same reaction. I get it!
Love this! For me, this collision is incredibly personal... beyond my own health journey. I started The Elephant Project years ago with my friend Sarah Leach to support and bring together patients who dealt with three supposedly rare (orphan) conditions: connective tissue disorders, mast cell activation, and autonomic dysfunction. We named our project after the Indian fable about three blind men each feeling a different part of the elephant and describing various aspects (leg, flank, trunk) not realizing that it was the same beast. Physicians, from all over the world, repeatedly told those of us dealing with the trifecta that no one could be "that unlucky" to have three incredibly rare conditions at the same time. Many patients, with this presentation, were even accused of being mentally ill and denied help. Sarah and I, both sufferers, ran into hundreds of patients with the exact same presentation. We knew this was a real and important connection and we knew we had to bring it to the attention of researchers. We did and our project resulted in the publication of several papers. More meaningful for me, years later, is to have a practitioner (like Dr. Ackerly) just make this offhand connection...as though it's been known forever.

Fast forward to my E4 journey: Dr. Bredesen called me several years ago and asked if I'd ever heard of CIRS. I hadn't. He was really excited and described this chronic inflammatory condition and all of it's associated symptoms. I finally said, "Oh, you're talking about mast cell activation!" which was new to him. I described how we had many members in our community dealing with this and histamine intolerance. We both suspected it was the same phenomenon and he ultimately published a paper on the topic and now believes it's a major driver of neurodegeneration. Once again, to hear Dr. Ackerly weave the" trifecta" and CIRS all together into one cohesive story... kind of blew me away. Understatement ;) . For me, it's a strong testament to the power that patients, "with skin in the game," can yield when we interact with the research community. That resonates even more strongly with this project and provides hope that we can ultimately make a difference just by gathering, sharing our stores, and making the research community aware of what we're learning.
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Re: Webcast with Dr. Ackerley about how mold/CIRS affects the brain

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You are such an inspiration to me Julie! Thank you for your tenacity and perseverance!
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