Topic: MAST CELL MCAS mastocyctosis AND b.duncani- is this a death sentence if untreated?
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Does anyone have MAST issues AND b.duncani?
how do I know which is bothering me if sx are so much alike?
anyone have any good links on the two of them together? I feel like I have a death sentence and I am feeling pretty discouraged and I don['t like feeling that way.
just wondering if it is really as bad as I think it might be to have these together?
im waiting for test results right now. seeing new mast dr (allergist) now. this is my first dr specifically for mast issues.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Ann-Ohio
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posted
what is b.duncan?
-------------------- Ann-OH Posts: 1589 | From Ohio | Registered: Aug 2014
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posted
Neither one should be a death sentence. You're talking about babesia, right?
I would get the MCAS handled and see how you feel after that. At least you won't have herxes to deal with.
I'm so glad you found a mast cell doctor. I hope he's a good one.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
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Member # 41384
posted
Ann- b.duncani is a bad type of babesia.
Lymetoo, I guess I just never feel good ever and I am so tired of it. my mast cell issues are drivin gme up the wall.
Dr. is good so far. we shall see, yes
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
You are correct ... the mast cell stuff is awful.
Get on the right meds and you will feel better.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
so I have been working v hard at all this. my MCAS is not imporving to the dr's delight, so he wants me to go on low dose chemo, but then insurance didn't approve it anyway....
not that I want chemo anyway, but there is no other known thing that helps in medical world so it seems. (I am talking about eosinophils in my GI system. )
Aparently mast cells are all over my GI, but getting EGD redo this friday.
I realize now that I had mast cell issues for decades, even before I lived in our current house. My LLMD keeps pushing to rip out all the walls, etc for mold, but I don't see this being a solution for me- I just have a feeling.
I think it is all related to genetics and I am screwed in that department.
So, one of my conditions, or a perfect storm made from all of them, is causing vascular issues that give me angina every time there is a temperature change.
like even if I run to the car right now in winter, or approach the freezer section in the grocery store.... Is this really happening??? hahaaaaaa This can't be my reality! I just won't accept it. But I have no idea what to do to help myself. I even drug out my MIL's vintage full length mink coat she gave me. it's the only coat that keeps me warm enough to go out right now in this 20 degree weather.
I am on so many supplements righ tnow to try and help the situation , but main stream medical hasn't a clue and if I ever end up in the hospital for something I will probably end up dead becasue they have no idea what they are doing .
I have been having terrible leg spasms for decades that no dr can figure out, and now they are much worse, especially on the right leg as they travel now up to my thigh and into groin and sent unbelievable pain up my torso and stopped just below the lung. My ankles are now constantly tingling also- not sure what that means.
my llmd now thinks I am having clots break up and move.
in my one FB support group someone said that babesia likes to live in the ankles and he said that while on treatment I am making them move around, but I am not too sure what is happpening for real. I only know that
this is a horror movie and I live every day wondering if it will kill me! No way to live!! The strange spasms come as soon as I get into cold temps, but are much worse when I sit and put my legs on the ottoman, or when I lay down in bed.
they start with my foot contorting and I cannot stop it or walk it off - the only thing I found to give the slightest relief is to put a hot cloth on it and then it settles down.
the after pain can lingure for 24 hours or less. Then I have angina that can last a week coming and giong. and the last time this big attack happened I had sharp pains in my lungs for about 2 weeks
it seems also that my last BW showed a lot of issues with thrombin and all that fun stuff. I just got the tests repeated this week and waiting for results.
I also have v high lipoprotien a , which again, no dr seems to know anything about!
My theory is that it is babesia duncani + MCAS. or maybe just the attack from the babs gives the mcas response?
my mcas dr. now changed my DX to "C-KIT neg. mastocytosis. "
I welcome any thoughts on this, but I really just wanted to type this out and feel some support for it here. FB is ok for stuff , but this place, Lymenet, is more like home to me.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
So sorry to hear all of this. Do you have a lot of flushing or "spots" as in Mastocytosis?
My friend was on high doses of chemo for masto. Then she got pregnant and had to stop. She thinks it WAS beginning to help, but it was a long road before she saw ANY improvement.
She took methotrexate for about 2-3 months.
Do you think you could also have Raynaud's? Do you have that?
Are you able to take curcumin?? It saves my life every day. No great results, but I wouldn't be able to function without it.
Keep searching .. the answers are out there!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
spots? you mean like a rash? - I did have the tiny brown ones appear suddenly at exact same areas on opposite sides of body.
flushing, yes with every food/startle/temp change as well as certain smells,e tc. but I manage that greatly with H1/H2 AH. without them I get so many more reactions. I am also doing well right now with cromolyn sodium oral, but mcas dr wants me better than I am I guess.
I try and avoid histamine foods, but it's pretty hard when you initally react to 99% of foods.
the chemo was low dose imatinib I think (sp?)
I had raynaud's a couple years ago and it went away , at least the visible signs on my hands, with mcas treatment of the H1/H2s.
curcumin!! my LLMD just RX me this! I just started it this week , so we shall see!
thanks Lymetoo!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I have a question for anyone who might know. I heard recently that quercetin can reduce mast cells. It's a pretty harmless supplement, in a lot of food, in fact. Anyone with mast cell activation have any experience with it?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I take quercetin. I haven't seen many changes taking it...meaning feeling any different. I do know though it is a good antiviral and anti inflammatory.
I'll say this though, my latest TGF beta 1 and MMP9 levels went down big time! Wondering if it's from the quercetin and the H1 and H2 blockers?
Posts: 597 | From Massachusetts | Registered: Mar 2019
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I have read afrin's book - that is what got me to see him and get my diagnosis,
I take some quercitin. don't notice much help.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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