Hi! Just found out about this forum and thrilled to find a research community! I've been on the cutting edge of research since I became chronically ill over a decade ago - and have received a lot of treatment for my illness that 99% of other patients never receive. So when I discovered GLP-1 medications bubbling up in the scientific literature for Mast Cell Disease (MCAS, Mastocytosis) and with case reports that show better efficacy for disease process and symptoms control than gold standard medications, you can guarantee I was massively intrigued. Over time, more and more reports have started coming in and I knew that this was something I needed to try. In fall, one of the two Immunologists who oversees my care told me that their clinic was not able to prescribe such medications since it is currently out of their scope, but that if I could get access that he would highly encourage me to give the medication a trial. The other immunologist has been very intrigued by the case reports and research I have shown him, but is somewhat conservative in his approach and his clinic actually has more restrictions.
I have had chronic illness symptoms since I was a teenager (am in my early 40's now). Food poisoning gave me severe IBS and food allergies that rose over time. Since my late 20's I have been plagued with Migraines, Fibromyalgia, Chronic Fatigue, POTS/Dysautonomia, Mast Cell Activation (with chronically elevated Tryptase, suspected Mastocytosis), Neuropathies, and later diagnosed with ADHD. The Somatic Super Syndrome chart sort of ties all of these syndromic illnesses together - but the root of all of them is neuroinflammation and/or immune system dysfunction, along with mitochondrial problems.
This past year, I've studied microbiome science (probably read about 450 journal articles to date) and implemented protocols to target some of my problems directly. The science has paid major dividends, and as part of the final keystone, I implemented GLP-1 therapy, starting with microdosing, in order to re-establish gut barrier integrity and Akkermansia muciniphila, which has a calming effect on the immune system. GLP-1 therapy, on top of my microbiome remodeling, has done something that has eluded medicine for three decades - it has restored food tolerance, normalized my gastrointestinal function, and even improved my mood.
The medical system's trial-and-error of medications likely screwed up my digestive system and microbiome further than it already was when I fell ill. This led to uncharacteristic weight gain along the way. I've shed much of it, but would like to get rid of what is left and return to the body I felt comfortable in.
I'm hoping to learn more from those with more experience, and to maximize my wellness and health further. I have a few other issues that persist, like severe insomnia, and some scars that I would love to see fade. Reading some of the cutting edge research shows that there is a lot of promise!
Thanks for reading my lengthy intro - I'd love to converse more about the topics that are within my expertise and to learn more from others here. Feel free to engage!
I have had chronic illness symptoms since I was a teenager (am in my early 40's now). Food poisoning gave me severe IBS and food allergies that rose over time. Since my late 20's I have been plagued with Migraines, Fibromyalgia, Chronic Fatigue, POTS/Dysautonomia, Mast Cell Activation (with chronically elevated Tryptase, suspected Mastocytosis), Neuropathies, and later diagnosed with ADHD. The Somatic Super Syndrome chart sort of ties all of these syndromic illnesses together - but the root of all of them is neuroinflammation and/or immune system dysfunction, along with mitochondrial problems.
This past year, I've studied microbiome science (probably read about 450 journal articles to date) and implemented protocols to target some of my problems directly. The science has paid major dividends, and as part of the final keystone, I implemented GLP-1 therapy, starting with microdosing, in order to re-establish gut barrier integrity and Akkermansia muciniphila, which has a calming effect on the immune system. GLP-1 therapy, on top of my microbiome remodeling, has done something that has eluded medicine for three decades - it has restored food tolerance, normalized my gastrointestinal function, and even improved my mood.
The medical system's trial-and-error of medications likely screwed up my digestive system and microbiome further than it already was when I fell ill. This led to uncharacteristic weight gain along the way. I've shed much of it, but would like to get rid of what is left and return to the body I felt comfortable in.
I'm hoping to learn more from those with more experience, and to maximize my wellness and health further. I have a few other issues that persist, like severe insomnia, and some scars that I would love to see fade. Reading some of the cutting edge research shows that there is a lot of promise!
Thanks for reading my lengthy intro - I'd love to converse more about the topics that are within my expertise and to learn more from others here. Feel free to engage!
