Mast cell success stories /improvement stories

Hello , I Have posted several times over the last week on the topic of mast cell- my symptoms have calmed down slightly but I can only tolerate 3 foods still - I know this may take time for my body to calm and allow me to eat other low histamine foods. I have done so much reading the last few days my brain hurts with the info - I feel now I have a big issue with candidia and as rice is one of my only foods I can eat I’m not helping it in any way .. I suppose I’m just looking for a bit of positivity.. I have read a lot of extreme cases where people become intolerant to everything .. It’s a lot to comprehend .. was anyone as bad a me did there body eventually allow them to eat other foods ? I am scared how weak I am I am also aware I can become allergic to the foods I can eat ..I’m also very annoyed at myself for thinking every symptom was a lyme herx . I know Saraeli you mentioned your poor friend in your posts who had a bad case for a month that was really helpful and I’m so glad she’s ok - she comes into my head when I get really bad and I’m hopeful that I can get through this - I’m not looking to be able to eat everything I just would like nutrients from a few foods. If anyone has anything positive please share everyone’s posts on mast cell come across as so calm and under control I am feeling very lost with this new battle...

I started having what I finally realized were MCAS symptoms after mold exposure last summer. I was put on Nystatin and Fluconazole for the mold and Xyzal and several supplements for the MCAS. Over time, the stuff got me stabilized, but I still had numbness everywhere that only seemed to progress.

In mid-January, I started taking TUDCA Plus. I started noticing improvements right away. The improvements in many symptoms have remained consistent and sustained. Most of the numbness is either gone or unnoticeable. Pain and inflammation are much improved.

I did have some burning in the tops of feet and toes last night that I associate with MCAS. Not sure why brought it on, but it reminded me that those symptoms had been gone for a while.

I can’t say TUDCA is an MCAS treatment, but for me it has been a game changing toxin reducing treatment. I believe toxins are primarily the cause of MCAS, and TUDCA has really helped me reduce the toxin load. Better than any binders I’ve ever taken.

k07,

That thread was very interesting and enlightening. Thank you for posting that link. I read all of it and the study they were referring to. I noticed that poat was from 2016. I wish I had known all that then. When I told my Lyme doc about it, she acted like she wasn’t too familiar with it. I was surprised.

After reading that information, I figured I must be wrong in how I thought it was helping. I thought my inflammation was from toxins being released in the bile. I would often have significant onset of inflammation in the mornings right after a bowel movement. I figured it was from toxins in the GI tract.

The article indicates it was as an immunomodulator in regards to dendritic cells, T cells, and eosinophils. So basically I am probably just suffering from MCAS or autoimmune with aberrant immune tesponses and the TUDCA effectively alters those responses. It’s not that I am getting rid of toxins.

I have been having some slight MCAS symptoms return this week. Not sure why. Hoping its short lived.
——————
In that thread, someone mentioned “You can see your eosinophil count on a typical CBC. You want this to be 2-3% and elevations above this may indicate allergic disease..”. I just checked my labs. My eosinophils were 2%. Absolute eosinophils was 0.1 (0.0 - 0.4).

My doc ran some other tests for MCAS, but the only thing I saw abnormal was prostaglandins. Prostaglandins:D2, S were 123 High (35 - 115).

Post Edited (WalkingbyFaith) : 3/23/2020 7:32:43 PM (GMT-6)

dcd,

Wow!!! That sounds awful. So sorry that happened. I did have a number of flares after starting it, but they didn’t last long, and I would feel better afterwards - like a herx should be. I had different symptoms flare at different times - mold/chemical sensitivities, bartonella skin symptoms, intestinal issues.

I still don’t understand exactly how TUDCA works or what it is doing specifically in me.

So . . . I have sad news. I had significant improvements from mid-Jan to mid-Mar that I attributed to TUDCA. Had bad days thrown in, but the inflammatory pain, numbness, and burning that I had pretty much disappeared.

According to my notes, the burning toxin pain and inflammation and numbness started returning the middle of March and has progressively worsened. The first connection I made was that I had gone in a very moldy building on March 10th. Other than that, the only differences were that I started taking ADP Oregano intermittently on March 8th. I would have started my 3rd bottle of TUDCA around mid March.

I wonder if I got a bad (ineffective) bottle of TUDCA. I just can’t comprehend how those symptoms went away and I felt better overall for 2 months only to have it all come back. I thought I had found something that would continue to work. I feel so lost and confused AGAIN. The numbness drives me batty.

I reread that post and information again that k07 had linked. It’s very insightful, but I still don’t comprehend it all. I had noticed for over a year that I would often have sudden and progressive onset of symptoms right after a bowel movement. I feel like if I could understand exactly why and what’s happening and why the TUDCA helped and now isn’t that I might have a chance at getting out of this awful pit.

most mcas we see here has roots in a gut pathogen gone systemic. sealing my leaky gut with demulcients like aloe slippery elm and marshmallow root helped some . s boulardi and vsl 3 alongside homemade kombucha helped as well . going after the the protozoan or sporazoan is a task in its own but for relief i found high dose buffered C and bentonite baths gave room in my histamine tolerance so i could make it down the laundry isle at store . dao only helped when eating high histamine foods. fwiw bee venom has a mast cell degranulatibg peptide that likely helped ...the initial itch was pretty insane though.