INTRO Medical Mystery & Microbiome Researcher - Hello from Wisconsin!

CuttingEdgeScience said:


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.

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So I started on .5 mg of tirz in nov and noticed MCAS symptom improvement very quickly, but also a loss of appetite. Decided to try reta (bc reta betta? didn't think too hard) and didn't get the same MCAS benefits but also didn't have the appetite suppression. I did have a little weight to lose and that's been very easy for me to do slowly on 1 mg or Reta, I am trying to lose very slowly so I don't impact my muscle mass.

Now that it's seasonal allergy season I noticed my MCAS symptoms rising again so I just added Tirz .5 in and that lovely MCAS reduction is back!!

regarding sleep: I haven't had much of a problem with it, but I did recently work on my tongue positioning and that's given me improved deep sleep which is kinda neat. I have pretty intense sleep hygiene. I used to be bad at sleeping but I think the sleep rituals + occasional use of 1 mg melatonin + sleepy herbs has helped my body get into the habit.

pinkypep said:


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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Not who you were asking but mine was, I briefly tried going up to 2mg reta and my RHR went up 10 points during my luteal phase. I have a fairly low HR so that was actually kinda nice, though I got really warm and very thirsty. This dosage also gave me really heinous heart burn so I backed off. But now I'm wondering if I should time my reta dosage with when i ovulate, I tend to have POTS episodes around then as my HR lowers & all the hormonal stuff impacts blood volume.
 
Mara_aa said:


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.

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Thanks for the message! I will definitely try to share more as my journey unfolds. I'm about a month in on the Rhapsido and it is definitely making a dent in some of my symptoms in ways I did not anticipate. As the microbiome interventions continue, the Akkermansia probiotic seems to be improving my GI function.
 
RoseRose said:


So I started on .5 mg of tirz in nov and noticed MCAS symptom improvement very quickly, but also a loss of appetite. Decided to try reta (bc reta betta? didn't think too hard) and didn't get the same MCAS benefits but also didn't have the appetite suppression. I did have a little weight to lose and that's been very easy for me to do slowly on 1 mg or Reta, I am trying to lose very slowly so I don't impact my muscle mass.

Now that it's seasonal allergy season I noticed my MCAS symptoms rising again so I just added Tirz .5 in and that lovely MCAS reduction is back!!

regarding sleep: I haven't had much of a problem with it, but I did recently work on my tongue positioning and that's given me improved deep sleep which is kinda neat. I have pretty intense sleep hygiene. I used to be bad at sleeping but I think the sleep rituals + occasional use of 1 mg melatonin + sleepy herbs has helped my body get into the habit.

Not who you were asking but mine was, I briefly tried going up to 2mg reta and my RHR went up 10 points during my luteal phase. I have a fairly low HR so that was actually kinda nice, though I got really warm and very thirsty. This dosage also gave me really heinous heart burn so I backed off. But now I'm wondering if I should time my reta dosage with when i ovulate, I tend to have POTS episodes around then as my HR lowers & all the hormonal stuff impacts blood volume.

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Thanks for sharing! So your testimonial adds to this curious trend where Tirz helps MCAS, but perhaps Reta doesn't for at least a subset of people. I went right to Reta as a friend had used it for weight, and because it was supposed to be more potent - but I may have jumped the gun too. Another friend is in a clinical trial for Tirz for Long COVID, and has had great benefit so far, and even on micro-dose is losing weight.

I've been on 2 mg Reta for a bit now, and am thinking I might need to scale back because I've had some reflux while I haven't seen any major change in weight, and that is in spite of decent appetite suppression. I've also had some HR rise, which doesn't seem to be causing me symptoms as it would in the past before IVIg, but may indicate that I am a bit higher than I need to be.

I keep cycling back to my missing Akkermansia - knowing that studies of earlier GLP-1 medications explicitly show blooms of it in the microbiome, leading to endogenous GLP-1 secretion, as well as T regulatory cell proliferation which will balance immunity.

Tongue positioning? I'm a bit intrigued as anything that would provide better sleep quality would likely benefit me at this point.

Am definitely considering a trial of Tirz..
 
CuttingEdgeScience said:


Thanks for sharing! So your testimonial adds to this curious trend where Tirz helps MCAS, but perhaps Reta doesn't for at least a subset of people. I went right to Reta as a friend had used it for weight, and because it was supposed to be more potent - but I may have jumped the gun too. Another friend is in a clinical trial for Tirz for Long COVID, and has had great benefit so far, and even on micro-dose is losing weight.

I've been on 2 mg Reta for a bit now, and am thinking I might need to scale back because I've had some reflux while I haven't seen any major change in weight, and that is in spite of decent appetite suppression. I've also had some HR rise, which doesn't seem to be causing me symptoms as it would in the past before IVIg, but may indicate that I am a bit higher than I need to be.

I keep cycling back to my missing Akkermansia - knowing that studies of earlier GLP-1 medications explicitly show blooms of it in the microbiome, leading to endogenous GLP-1 secretion, as well as T regulatory cell proliferation which will balance immunity.

Tongue positioning? I'm a bit intrigued as anything that would provide better sleep quality would likely benefit me at this point.

Am definitely considering a trial of Tirz..

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Weird weird weird question, but have you considered a Fecal microbiota transplantation? Is that an option for Akkermansia colonization?

I saw this study that was promising:

  1. Wang Z, Qin X, Hu D ...

    Akkermansia supplementation reverses the tumor-promoting effect of the fecal microbiota transplantation in ovarian cancer

    Cell Reports, 41
 
Hotlongs said:


Weird weird weird question, but have you considered a Fecal microbiota transplantation? Is that an option for Akkermansia colonization?

I saw this study that was promising:

  1. Wang Z, Qin X, Hu D ...

    Akkermansia supplementation reverses the tumor-promoting effect of the fecal microbiota transplantation in ovarian cancer

    Cell Reports, 41

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Not weird at all - I'd have considered FMT many years ago, before we even knew as much about the microbiome, just to attempt to fix my GI issues that I'd suffered with for decades. Medicine has generally only used it for C. diff. so access is about impossible. With a suitable donor, I would expect Akkermansia to populate, especially after reading another article.

I've seen a decent number of articles like the one you cited about Akkermansia balancing immune function, and improving disease outcomes and efficacy of medications for various types of cancer, MS, ALS, Diabetes (via Metformin and GLP-1 drugs both).

I'm really curious if I've potentially engrafted Akkermansia as part of my last experiment. Since GLP-1 drugs encourage it to bloom, as do certain cranberry extracts, Berberine, and HMO (all of which I was using at one point). I have seen some shifts in GI function again.

I found a journal article where they studied Akkermansia engraftment, and it appeared that it has few interactions with most of the biome where it would be competitive or find resistance, since it lives in the mucin layer. Ergo, it may more easily take up residence as it is a bacterium that does live in the gut unlike many probiotics, and its presence tends to be self-sustaining as it induces release of mucin. It also didn't change very much in the biome at large when introduced.
 
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!

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Your profile mirrors mine, down to the elevated tryptase. Did you end up getting an HaT diagnosis? And that's what brought me here too. Dr. Afrin put out a paper last fall that solidified my hunch, and I was ready to play guinea pig. It paid off.
 
samunderi said:


Your profile mirrors mine, down to the elevated tryptase. Did you end up getting an HaT diagnosis? And that's what brought me here too. Dr. Afrin put out a paper last fall that solidified my hunch, and I was ready to play guinea pig. It paid off.

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I am actually negative for HαT - zero copies, so this Tryptase is 100% likely to be caused by mast cell burden. Where the heck in the body they are hanging out is anyone's guess. Yet, two bone marrow biopsies have yet to meet enough of the criteria for SM, so I'm left hanging in the wind. I'm waiting on one final test to see if a few spindle cells are positive for CD25/CD30. That would at least indicate a clonal process likely to respond to TKI drugs.

I saw the original article now at least 2 years ago for Systemic Mastocytosis that responded to GLP-1 therapy, and then when Dr. Afrin's case study and Dr. Ruhoy and Dr. Kaufman using it for ME/CFS I was sold to actually begin. Somewhat glad I didn't jump right on Sema given its GI effects, especially before my gut remodeling endeavor.

Curious to know more about your protocol. I'm planning to try Tirz, as I've only been on Reta thus far.
 
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