Mast Cell Activation?

There are a lot of possible symptoms too much to list but mine are a rapid heartbeat and racing mind from alcohol and various oils such as olive and hemp. I also break out in itchy rashes and bumps daily in the winter. The colder it is outside the more frequent they get. All from Lyme.

I've diagnosed myself but the criteria is symptoms plus either an elevated serum tryptase or urine prostaglandin and an improvement from antihistamine therapy.

What are your triggers and symptoms?

ToddPaul said...
There are a lot of possible symptoms too much to list but mine are a rapid heartbeat and racing mind from alcohol and various oils such as olive and hemp. I also break out in itchy rashes and bumps daily in the winter. The colder it is outside the more frequent they get. All from Lyme.

I've diagnosed myself but the criteria is symptoms plus either an elevated serum tryptase or urine prostaglandin and an improvement from antihistamine therapy.

What are your triggers and symptoms?

I don't think I have it. Yet I know next to nothing about it.

There is/was someone here with Mast Cell Activation. She re-appeared only a couple times in the last two years or so.

I was tested for it a few years ago - I dont remember what tests were for it though.

I’m currently dealing with mast cell activation. My symptoms are a lot like anaphylactic allergy symptoms (though thankfully not as severe) with swelling of lips, tongue, throat, and eyes, and respiratory difficulty.

They happen in response to irritants like strong spices or toothpaste, though what has scared me is lately they seem to be happening out of the blue (which I hope is just in response to endotoxins from herxing).

I was tested for a bunch of different allergies all of which were negative, my tryptase levels were also normal. My allergist nonetheless diagnosed me with “immune system activation” and prescribed me antihistamines. They help a lot but I dislike antihistamines personally. I think lyme has just destroyed my blood brain barrier so even non-drowsy antihistamines find their way into my brain and knock me out. Currently trying vitamin C and turmuric to get histamine under control, but am open to anything that will help keep me from having to carry an albuterol inhaler around.

It started once my antibiotics first began to work against my lyme symptoms, and got bad enough that I actually had to stop treatment. Laying off antibiotics normalized it, and being back on them now has set it off again, so there’s definitely a correlation with antibiotics. I don’t know all the science behind it but it seems like since I have had a chronic infection for so long, my immune system had to become over-active to try and keep up. Now that there are antibiotics to help kill off the bacteria, my immune system has had to busy itself with whatever irritants it comes into contact with.

Post Edited (SicklySkald) : 8/29/2018 8:43:44 AM (GMT-6)

ExhaustedGirl1 said...
Do people commonly have mast cell activation and lyme at the same time? Is it something that can be brought on by lyme?

Yes. Its very commonly associated with lyme and biotoxin diseases.

I have it. For me there are few physical presentations but mostly mental, considering this whole disease feels as if it's in my brain. I will get elevated heart rate and weezy but also slowed thinking, mood drops, memory loss, increased derealization and increased light sensitivity

The ROOT cause of mast cell activation is, tje recycling of toxins in the gut. The toxins get absorbed into the bloodstream... the toxins are byproduct of dead germs and mold toxins, and/or S.I.B.O..

Mast cell activation symptoms
Syncope(feeling faint, lightheaded) but not dizzy or vertigo
Weakness like the feeling the whole body is shutting down
Anxiety, panicy, feeling of doom
Sneezing, sctratchy throat & cough
Chest tighnesss, shortness of breath or air hunger,
Racing heartbeat,
Loss of bowel control(intestibal cramping)

My doctor, Dr M has me believing that bartonella and lyme are pretty significant triggers, as well as toxicity. He told me my toxic encephalopathy could be keeping the mast cells chronically triggered. This is consistent with Dr Shoemaker in saying that CIRS commonly causes MCAS.

I feel that I have MCAD triggered by Lyme. I am unable to take anything that boosts the immune system, kills bacteria or disrupts biofilm. My symptoms are chest tightness, insomnia, severe depression, fatigue, constipation, eye irritation, joint pain, heart palps and tight muscles. I can't tolerate abx, herbals or most supplements. Even 1/8 of a capsule of magnesium will cause a horrific flare. I get so full of inflammation that I have joint damage everywhere. I take ketotifen and doxepin before bed which allow me to sleep, stop the depression, and have stopped the weight loss. Before starting them I was waking up at 2-3 am with heart palps, elevated heart rate, sweats and that was it for sleep. Even thought these antihistamines have helped I still can't tolerate any treatment. I drank a green tea and even that started a flare. I didn't realize it but it's an immune booster. I have tried quercetin but it really didn't do anything. I would love to know what to take to help with MCAD. I am seeing a specialist later this month (allergist) but I've read on a forum that he would diagnose without an elevated tryptase which I don't have.

Post Edited (dmw52) : 12/18/2018 4:19:19 PM (GMT-7)

Dr SP in wilton, ct, told me the same thing about mcas often going away when the disease is gone...says its pretty common with these diseases...explains why after a yr of abx all ive got to show for it is more brain fog and gastritis, which i think is mcas and not just lyme and co.....

but to kill the disease you get inflammation, and that triggers my newly discovered mcas....right now im just trying to figure out h1 and h2 blockers that work....h2 particularly as my mcas causing reflux and gastritis, but the zantac ive taken last couple of days has given me alot of fatigue and brain fog....also taking quercetin and SP said vitamin c as well....really depressing having ANOTHER friggin disease complex with no cure and no doctors who know about it/take insurance...

Post Edited (dbwilco) : 9/4/2018 1:25:56 PM (GMT-6)

dmw52 said...
I feel that I have MCAD triggered by Lyme. I am unable to take anything that boosts the immune system, kills bacteria or disrupts biofilm. My symptoms are chest tightness, insomnia, severe depression, fatigue, constipation, eye irritation, joint pain, heart palps and tight muscles. I can't tolerate abx, herbals or most supplements. Even 1/8 of a capsule of magnesium will cause a horrific flare. I get so full of inflammation that I have joint damage everywhere. I take ketotifen and doxepin before bed which allow me to sleep, stop the depression, and have stopped the weight loss. Before starting them I was waking up at 2-3 am with heart palps, elevated heart rate, sweats and that was it for sleep. Even thought these antihistamines have helped I still can't tolerate any treatment. I drank a green tea and even that started a flare. I didn't realize it but it's an immune booster. I have tried quercetin but it really didn't do anything. I would love to know what to take to help with MCAD. I am seeing a specialist later this month (allergist) but I've read on a forum that he would diagnose without an elevated tryptase which I don't have.

Green tea is really high in histamines, as is most tea. I can't touch it either

mcspike said...
The ROOT cause of mast cell activation is, tje recycling of toxins in the gut. The toxins get absorbed into the bloodstream... the toxins are byproduct of dead germs and mold toxins, and/or S.I.B.O..

This makes the most sense to me and what dbwilco said. Both longterm use of abx/antimicrobials and chronic infections increase oxidative stress and excess toxins that can get recycled over and over again in genetically susceptible people. This is where Shoemaker's CIRS physiology and use of cholestyramine to bind recycling toxins can potentially play a significant role.

There are more players, too, including DAO, estrogen, and copper (according to this article): www.samanthagilbert.com/histamine-mast-cell-disorder-or-methylation-imbalance/. I do not know how accurate the article is, so use your own judgement. It also appears to be from 2015 and may be outdated information.

Aerose,
This article says, "Antihistamines and certain antidepressant medications can cripple DAO function and make symptoms worse." Those who don't find benefit from antihistamines may be affected more by other factors, such as DAO or copper. Dr. M's office has identified MCAS as an area they specialize in, so I'm assuming he knows as much as anyone at this point. Just throwing this out there.