Mast Cell Activation Syndrome

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sgirl11
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Date Joined May 2018
Total Posts : 11
   Posted 5/18/2018 10:53 PM (GMT -6)   
Does anyone have any experience with this? If so, what are your symptoms?

mpost
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Date Joined Feb 2015
Total Posts : 1527
   Posted 5/18/2018 11:32 PM (GMT -6)   
yes.

itchy eyes.

watch this
/youtu.be/5ng5f4hCPkU

and this
/youtu.be/TFZ4xnYJqVw

Fronton
Regular Member


Date Joined Sep 2014
Total Posts : 443
   Posted 5/19/2018 5:49 AM (GMT -6)   
sgirl11 said...
Does anyone have any experience with this? If so, what are your symptoms?


Sgirl, do you suspect it’s playing a role for you? If so, what makes you think so?
There does seem to be some Lyme patients with mcas symptoms. Some full blown and others a symptom here and there.

Aerose91
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Date Joined Feb 2016
Total Posts : 576
   Posted 5/19/2018 7:04 AM (GMT -6)   
I was just dignosed with this after 7 years. My symptoms are severe 24/7 depersonalization/derealization, inability to feel (emotions, time, connection, anything), psychosis, confusion, hallucinations, paranoia, incessant OCD, irritability/rage, an overwhelming feeling of nothingness in my brain and severe exercise intolerance.

I was dignosed with bartonella 3 years ago but after over a year of treating it and seeing no improvement i figured i was still missing something. I thought it was another infection but my current doc thinks its MCAS caused by toxic encephlopathy

sgirl11
New Member


Date Joined May 2018
Total Posts : 11
   Posted 5/19/2018 8:36 AM (GMT -6)   
Thank you so much you guys. The sun and exercise seem to affect me the most, sometimes no feelings at all like you said Aerose91. It's amazing that histamine can affect your emotions so much, too. What are you using to treat, and more importantly - is it working? I need some hope that this can improve and I'll be able to exercise again because I love exercise and I love being in the sun!

Aerose91
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Date Joined Feb 2016
Total Posts : 576
   Posted 5/19/2018 10:33 AM (GMT -6)   
I feel you. I was a personal trainer prior to this and haven't been able to as much as walk up a flight of stairs for 7 years without suffering long term brain damage. Fatigue isn't a problem for me, this whole disease is in my brain

I also react to the sun. Early mornings and late evenings are best and i try to get as much sun as i can during those times because it's healthy for us. However, between 10am and 3pm when the sun is strongest my dissociation is out of this world. I lose my ability to see color, rampantly hallucinate and get overflown with incessant, paranoid delusions.

My doc had me start with 2 antihistamines- xyzal, an H1 blocker and Famatodine, an H2 blocker. They don't do much but the xyzal reduces my reactions to food a bit. Obviously i employed a low histamine diet. He also wanted me to start up methylation treatment again- i had done it for over a year with no results but because of my snp's he wants me back on it

What has shown a slight bit of promise has been inositol. I researched mast cell stabalizers from Stephen Buhner and he mentions butterbur and inositol. The butterbur didn't do anything for me but the inositol takes a bit of the edge off. I'm highly sensitive to heat and humidity and if i take inositol during it, my reactions will decline slightly. These things haven't helped my baseline at all but they make my lows a little less low.

My dr. seems to believe that I'm a more severe mast cell sufferer so he is considering switching me onto dexamethasone, ritalin and another med i forgot. He said those are potent mast cell stabalizers. Of course I'm still on bartonella treatment but that hasn't shown any promise as of this point

Girlie
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Date Joined May 2014
Total Posts : 33895
   Posted 5/19/2018 10:39 AM (GMT -6)   
Aerose91 said...
I feel you. I was a personal trainer prior to this and haven't been able to as much as walk up a flight of stairs for 7 years without suffering long term brain damage. Fatigue isn't a problem for me, this whole disease is in my brain

I also react to the sun. Early mornings and late evenings are best and i try to get as much sun as i can during those times because it's healthy for us. However, between 10am and 3pm when the sun is strongest my dissociation is out of this world. I lose my ability to see color, rampantly hallucinate and get overflown with incessant, paranoid delusions.

My doc had me start with 2 antihistamines- xyzal, an H1 blocker and Famatodine, an H2 blocker. They don't do much but the xyzal reduces my reactions to food a bit. Obviously i employed a low histamine diet. He also wanted me to start up methylation treatment again- i had done it for over a year with no results but because of my snp's he wants me back on it

What has shown a slight bit of promise has been inositol. I researched mast cell stabalizers from Stephen Buhner and he mentions butterbur and inositol. The butterbur didn't do anything for me but the inositol takes a bit of the edge off. I'm highly sensitive to heat and humidity and if i take inositol during it, my reactions will decline slightly. These things haven't helped my baseline at all but they make my lows a little less low.

My dr. seems to believe that I'm a more severe mast cell sufferer so he is considering switching me onto dexamethasone, ritalin and another med i forgot. He said those are potent mast cell stabalizers. Of course I'm still on bartonella treatment but that hasn't shown any promise as of this point


Would the dexamethasone be low dose? Otherwise it can lower your immune function.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Aerose91
Veteran Member


Date Joined Feb 2016
Total Posts : 576
   Posted 5/19/2018 1:45 PM (GMT -6)   
Yes, low dose. Dr M seems pretty sharp about this stuff. He's the first LLMD I've seen who truely has a deep understanding of the role adrenal fatigue plays in this, which is how my illness staryed 7 years ago

sgirl11
New Member


Date Joined May 2018
Total Posts : 11
   Posted 5/19/2018 2:06 PM (GMT -6)   
Adrenal fatigue has a role in mast cell activation syndrome or are you speaking about lyme in general? Those were the 2 things I was recently looking deeper into - adrenal fatigue and MCAS, are they actually related?

Aerose91
Veteran Member


Date Joined Feb 2016
Total Posts : 576
   Posted 5/19/2018 3:09 PM (GMT -6)   
sgirl11 said...
Adrenal fatigue has a role in mast cell activation syndrome or are you speaking about lyme in general? Those were the 2 things I was recently looking deeper into - adrenal fatigue and MCAS, are they actually related?


Both. Adrenal fatigue stems from the hypathalamus. The adrenal glands are fine, it's the signal that is getting distorted. Lyme can cause slowing of your hypathalamic function, thereby reducing the output of your HPA axis which is another reason why hypothyroidism tags along as well. Also, 85% of the mast cells in your brain are located in your hypathalamus (they don't know why this is) so safe to say if something triggers your brain mast cells (infection, toxicity), it will really screw up your hypathalamic function

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 5/20/2018 2:38 AM (GMT -6)   
I just want to mention you can have Adrenal fatigue from malfunctioning adrenals as well.

If you have low cortisol it can be from malfunctioning adrenal glands...or it can be from the pituitary gland not producing enough ACTH hormone (which in turn stimulates the adrenals to produce the cortisol).
This is secondary adrenal insufficiency.

The malfunctioning adrenals can be from autoimmune , tuberculosis or other infections...

The secondary adrenal insufficiency is more common than the adrenal gland dysfunction (if it's really low - it's Addison's disease)

Secondary adrenal insufficiency occurs when other glands such as the pituitary gland (a gland in the endocrine system located near the base of the brain) does not produce enough of its hormone (ACTH) that stimulates the adrenals to produce cortisol. If the ACTH is too low the adrenal glands can stop producing cortisol and may shrink in size. This secondary adrenal insufficiency is more common than Addison’s disease.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

cakegirl
Regular Member


Date Joined Nov 2016
Total Posts : 262
   Posted 5/22/2018 1:54 PM (GMT -6)   
sgirl11 said...
Does anyone have any experience with this? If so, what are your symptoms?


Our symptoms are extreme confusion, severe disorientation, delusions. It's all neurological. Food, stress are triggers.

It took a long time to figure out that that it was MCAD/histamine. Doctors were clueless about it.

We tried all the natural remedies but none worked and actually caused symptoms.

We're using antihistamines and cromolyn. There was a cumulative effect to taking Claritin. It takes a while to build up and be effective, just like cromolyn. So don't give up if you don't see immediate results.

She can't tolerate most herbs or supplements. We also don't know if MCAD is her main disease or if MCAD is a result Lyme.

It is a very difficult disorder to have.

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1527
   Posted 5/22/2018 3:23 PM (GMT -6)   
MCAS is a syndrome, which means the causes are multiple or even better, UNKNOWN.

That is not a real disease, it's just bunch of doctors treating symptoms for something they do not understand.

That ofc does not mean u should not treat MCAS and many ppl find relief with chromolyn, H1 blockers, vit C and everything else that stabilizes mast cells. But at the same time u should find out what's really wrong with u and that cannot be the mast cells. They just respond to something provoking them ...
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