INTRO Medical Mystery & Microbiome Researcher - Hello from Wisconsin!

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Milwaukee, Wisconsin, USA
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!
 
CuttingEdgeScience said:


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!

Click to expand...
Hi! My daughter was diagnosed a few months ago with Pots. Is that something that has resolved for you? How?
 
Hello fellow Wisconsinite! GLP1s worked really well for inflammation got rid of the pain, lost a good amount of weight, I was back to myself again living a pain free lifestyle. No steroids needed was walking, working out again, didn't need two hands to hold a coffee pot etc Then had a bad reaction to the latest biologic, which has thrown me into a constant flare, back to 2 hands on a coffee pot, basically a complete set back sighhh GLP now less effective, became de-sensitized to it. So much like you, I'm combing through clinical trials, research articles, anything I can find that may give me some hope in finding something that will help since the Traditional meds aren't cutting it.
 
Hi! I'm glad to see other people w MCAS on here! I'm early 40's as well and I've gone through the wringer with my health. Doing a lot better now and def see an improvement w reta, excited to try some other stuff! Not a ton of posts for ppl with our concerns, but I'm curious how many more people will end up here as a the research develops.
 
Safety Squint said:


Hi! My daughter was diagnosed a few months ago with Pots. Is that something that has resolved for you? How?

Click to expand...
i am also interested in new ways to treat POTs, its so painful be a father and watching her struggle, and being unable to help for a condition that "has no cure"
 
Safety Squint said:


Hi! My daughter was diagnosed a few months ago with Pots. Is that something that has resolved for you? How?

Click to expand...
Hi, I have received very significant medical treatment due to my research and advocacy. IVIg has made major improvements in my POTS - however I've seen discussions of GLP-1 used in ME/CFS, POTS, and MCAS causing substantial improvements.

So far in my journey, I haven't achieved a complete remission. I just did another microbiome test, and the keystone gut bacteria, Akkermansia, which protects the gut lining integrity, and which often blooms from GLP-1 use, is still completely absent in my gut. I have suspected that food poisoning or swine flu knocked it out completely, setting off my illness cascade. It has certain effects, including stimulation of endogenous GLP-1 production, as well as playing a role in calming of the immune system and creating immune tolerance.

What is profound, however, is that my Butyrate production has skyrocketed, which was another missing piece of my inflammatory puzzle. So I suspect that the GLP-1 has played a role in that. And I credit this to being able to eat foods that I had lost long ago, which is miraculous in itself.

I'm shifting gears toward a solid focus on Akkermansia engraftment using cutting edge probiotics paired with prebiotics that it feeds on. I suspect that when I am successful, that weight loss will also come along for the ride - curiously, I have seen very little weight loss (and I'm slightly overweight, but at a dose that I find to be a bit higher than I expected).
 
CheesyPotato said:


Hello fellow Wisconsinite! GLP1s worked really well for inflammation got rid of the pain, lost a good amount of weight, I was back to myself again living a pain free lifestyle. No steroids needed was walking, working out again, didn't need two hands to hold a coffee pot etc Then had a bad reaction to the latest biologic, which has thrown me into a constant flare, back to 2 hands on a coffee pot, basically a complete set back sighhh GLP now less effective, became de-sensitized to it. So much like you, I'm combing through clinical trials, research articles, anything I can find that may give me some hope in finding something that will help since the Traditional meds aren't cutting it.

Click to expand...
Intertesting - biologics, and medications in general can have far reaching effects on the gut biome. I am curious if it may have disrupted some of the balance, leading to the GLP becoming less effective. I just started new targeted treatment in balancing my gut. There are definitely answers out there, and at least for me, there has been a bit of pivoting when certain theories don't pan out.
 
CuttingEdgeScience said:


Hi, I have received very significant medical treatment due to my research and advocacy. IVIg has made major improvements in my POTS - however I've seen discussions of GLP-1 used in ME/CFS, POTS, and MCAS causing substantial improvements.

So far in my journey, I haven't achieved a complete remission. I just did another microbiome test, and the keystone gut bacteria, Akkermansia, which protects the gut lining integrity, and which often blooms from GLP-1 use, is still completely absent in my gut. I have suspected that food poisoning or swine flu knocked it out completely, setting off my illness cascade. It has certain effects, including stimulation of endogenous GLP-1 production, as well as playing a role in calming of the immune system and creating immune tolerance.

What is profound, however, is that my Butyrate production has skyrocketed, which was another missing piece of my inflammatory puzzle. So I suspect that the GLP-1 has played a role in that. And I credit this to being able to eat foods that I had lost long ago, which is miraculous in itself.

I'm shifting gears toward a solid focus on Akkermansia engraftment using cutting edge probiotics paired with prebiotics that it feeds on. I suspect that when I am successful, that weight loss will also come along for the ride - curiously, I have seen very little weight loss (and I'm slightly overweight, but at a dose that I find to be a bit higher than I expected).

Click to expand...
I'm sure you've seen this!

https://www.sciencedirect.com/science/article/pii/S0002962925011061

Anecdotally I've seen a big improvement of my MCAS since starting a GLP!
 
CuttingEdgeScience said:


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!

Click to expand...
Welcome! Thank you for your intro. I have been battling a systemic autoimmune disease the last 5 years that has had a huge impact on my life. I’ve been through dozens of medications that have had significant negative outcomes. I am looking forward to adding more to my stack to see if I can heal from the inside out. Do you plan to just stick with the GLP-1 or do you/have you planned to add any more?
 
CuttingEdgeScience said:


Hi, I have received very significant medical treatment due to my research and advocacy. IVIg has made major improvements in my POTS - however I've seen discussions of GLP-1 used in ME/CFS, POTS, and MCAS causing substantial improvements.

So far in my journey, I haven't achieved a complete remission. I just did another microbiome test, and the keystone gut bacteria, Akkermansia, which protects the gut lining integrity, and which often blooms from GLP-1 use, is still completely absent in my gut. I have suspected that food poisoning or swine flu knocked it out completely, setting off my illness cascade. It has certain effects, including stimulation of endogenous GLP-1 production, as well as playing a role in calming of the immune system and creating immune tolerance.

What is profound, however, is that my Butyrate production has skyrocketed, which was another missing piece of my inflammatory puzzle. So I suspect that the GLP-1 has played a role in that. And I credit this to being able to eat foods that I had lost long ago, which is miraculous in itself.

I'm shifting gears toward a solid focus on Akkermansia engraftment using cutting edge probiotics paired with prebiotics that it feeds on. I suspect that when I am successful, that weight loss will also come along for the ride - curiously, I have seen very little weight loss (and I'm slightly overweight, but at a dose that I find to be a bit higher than I expected).

Click to expand...
Thank you so much for the reply! I'll definitely do more research on the relationships between POTS and GLP1. Any resources you recommend I should get my hands on?
 
RoseRose said:


I'm sure you've seen this!

https://www.sciencedirect.com/science/article/pii/S0002962925011061

Anecdotally I've seen a big improvement of my MCAS since starting a GLP!

Click to expand...
Yes, I saw that paper when it first came out - curiously did you have issues with sleep, and did you see any improvement? If you're comfortable sharing, which GLP and micro-dose or standard? I've seen a few folks comment in various places online that Tirz was better for them than Reta (one for inflammation, one for MCAS), which has me curious if I should switch. Given that I'm at 2 mg of Reta without much of any weight change has me a bit puzzled too, but I was only slightly overweight to begin with. That said, I've seen underweight friends in a clinical trial for ME/CFS lose weight on a micro-dose! Definitely a lot that we don't know yet.
 
CBird said:


Welcome! Thank you for your intro. I have been battling a systemic autoimmune disease the last 5 years that has had a huge impact on my life. I’ve been through dozens of medications that have had significant negative outcomes. I am looking forward to adding more to my stack to see if I can heal from the inside out. Do you plan to just stick with the GLP-1 or do you/have you planned to add any more?

Click to expand...
I've also failed and had adverse outcomes on a number of medications. If you haven't had testing for P450 Liver Enzyme genetics I highly recommend it. I used GeneSight and found out that I have almost no activity at CYP2D6. About 1/4 - 1/3 of all medications are metabolized in some part by this enzyme. I now can avoid taking things when I know they won't work.

I'm absolutely curious to try other things - definitely a tinkerer. I just recently started Rhapsido as one of my immunologists was able to get insurance to cover it. I've seen an improvement from that over Xolair which I was using before.

So far, the gut microbiome work and GLP-1 has made major improvements to my chronically disrupted digestion. I've reintroduced lost foods, and my motility, consistency, and quality of digestive function has improved by leaps and bounds.

I just wish that I could put an end to my severely disrupted sleep. So, in that realm, I am sure there is something out there that might help.
 
Native Zebra said:


Have you researched LDN yet?

Good Luck!


Click to expand...
Yep, I have - my neurologist tried to switch me to it from my IVIg when she retired under somewhat odd circumstances. The pharmacist, who was a big proponent of it, said it would be questionable for me due to my CYP2D6 mutation - especially when the clinic gave me a medication processed by 2D6 along with it. I had some weird side effects, and it failed to have any positive impact. I've definitely heard some patients who have had profound results from it.

That said, I've always questioned if some of the effects that patients get from it may be tied to the fact that it inhibits a ton of CYP enzymes, thus it would raise serum levels of a large number of existing medications. It affects 3A4, 2C9 and 2D6 greatly, even at very low concentrations. So anyone that takes SSRI, SNRI, antipsychotics, other antidepressants, benzos, pain meds, blood pressure meds, statins, warfarin, NSAIDs, to name some common drugs.

So for each of the above enzymes, 45-60%, 15-20%, and 20-25%, respectively, of all commonly used meds are metabolized by them. In other words, at least 80% of all common drugs!



c762e425922fe21bd9baf9c2e3e4d3784493c1b9c013ff7bcc72d56093701008.jpg




Effect of Naltrexone Hydrochloride on Cytochrome P450 1A2, 2C9, 2D6, and 3A4 Activity in Human Liver Microsomes - PubMed



These outcomes advocate that there is a great possibility of drug interactions resulting from the concurrent administration of naltrexone hydrochloride with actives that are metabolized by these CYP enzymes, particularly CYP2C9 and CYP2D6. Nevertheless, further clarification is needed through...

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pubmed.ncbi.nlm.nih.gov

It is worth noting that I was on very few meds at that time, too - just the IVIg, and the topical anticholinergic Qbrexza for hyperhidrosis was Rx alongside it.
 
Safety Squint said:


Thank you so much for the reply! I'll definitely do more research on the relationships between POTS and GLP1. Any resources you recommend I should get my hands on?

Click to expand...
There are a few journal articles, mostly pertaining to MCAS, such as the one from RoseRose in post #8. The issue is that there is frequently an overlap of MCAS and POTS.

This was the first case-study that I found showing mast cell disease.




Unintended Benefit of GLP-1 Treatment for Obesity: Resolution of Chronic Systemic Mastocytosis Symptoms : Bariatric Times





b6b62b994f139a503137df086fbcc67790540cc955ca1541eb54d279a3cb0e3f.jpg



bariatrictimes.com

This article is a new one I found, possibly showing already increased GIP in some POTS patients. Reason to certainly be cautious, and why micro-dosing is used in our sensitive patient population. Now I wonder if this might be why my HR has been higher in more recent months.




Worsening Postural Tachycardia Syndrome is Associated with Increased Glucose Dependent Insulinotropic Polypeptide Secretion - PMC



Postural Tachycardia Syndrome (POTS) is characterized by excessive upright tachycardia and disabling pre-syncopal symptoms, which are exacerbated after consuming a high-carbohydrate meal; it is unknown, however, what is the precise underlying ...

4d13c41cbc0409fb932089618e379d69d6e07846fc324487242c1d77d1bad140.png



pmc.ncbi.nlm.nih.gov
 
Welcome! Thanks for sharing such a thoughtful and detailed introduction. It’s clear you’ve put an incredible amount of work into understanding your conditions and navigating a really complex medical journey. It’s great to hear that your microbiome research and GLP‑1 therapy have brought you some meaningful improvements, that kind of progress after so many years must feel huge.

Everything I know so far comes from reading through this forum, and it’s been an amazing resource for learning from others’ experiences. I’m really glad you’re here and look forward to hearing more about your insights and following your progress.
 
CuttingEdgeScience said:


I've also failed and had adverse outcomes on a number of medications. If you haven't had testing for P450 Liver Enzyme genetics I highly recommend it. I used GeneSight and found out that I have almost no activity at CYP2D6. About 1/4 - 1/3 of all medications are metabolized in some part by this enzyme. I now can avoid taking things when I know they won't work.

I'm absolutely curious to try other things - definitely a tinkerer. I just recently started Rhapsido as one of my immunologists was able to get insurance to cover it. I've seen an improvement from that over Xolair which I was using before.

So far, the gut microbiome work and GLP-1 has made major improvements to my chronically disrupted digestion. I've reintroduced lost foods, and my motility, consistency, and quality of digestive function has improved by leaps and bounds.

I just wish that I could put an end to my severely disrupted sleep. So, in that realm, I am sure there is something out there that might help.

Click to expand...
That’s really great! I actually just relieved a lot similar to GeneSight from my doctor. I’m hoping to have more information/answers over the next few weeks. Do you currently take any sleeping aids? Or are you hoping to avoid those?
 
I'm not sure what the difference between pots and regular tachycardia is, but has your heart rate been affected at all by the reta?
 
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