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» LymeNet Flash » Questions and Discussion » General Support » MAST CELL ACTIVATION DISORDER (Page 3)

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Author Topic: MAST CELL ACTIVATION DISORDER
terv
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So did you fail at growing the sprouts?

Or were you allergic to them?

Or Did They not work?

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Lymetoo
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Difficult to grow .. big pain in the rear. They only last so long, so you throw half of them out.

I didn't like the taste .. on and on.

[Big Grin]

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Lymetoo
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Natural Treatments for Mast Cell Activation Syndrome:

https://www.hoffmancentre.com/2018/03/natural-treatments-mast-cell-activation-syndrome/

The Agony of Mast Cell Activation Syndrome:

https://www.lymedisease.org/lyme-sci-mcas-agony/

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Lymetoo
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H1's and H2's

-

The histamine blocking drugs (aka antihistamines) work on the body’s histamine (H1 or H2) receptors.

H-1s are used to treat the effects of histamine throughout the body (“allergies” and “itching”) while H-2s are primarily used to treat heartburn and ulcers (by reducing stomach acid).

Commonly used H1s:
— Hydroxyzine hydrochloride (Atarax, Vistaril)
— Diphenhydramine (Benadryl, Benylin, Diphen)
— Cyproheptadine (Periactin)
— Cetirizine (Zyrtec)
— Levocetirizine (Xyzal)
— Fexofenadine (Allegra)
— Loratadine (Claritin, Alavert)
— Desloratadine (Clarinex)

H-2s:
— Famotidine (Pepcid)Pepcid-AC as an OTC medication
— Cimetidine (Tagamet and Tagamet-HB)
— Nizatidine (Axid and Axid AR)
— Ranitidine (Zantac and Zantac 75)

They work synergistically to help alleviate symptoms of Mast Cell patients.

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aklnwlf
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Hi there TuTu! I've been browsing lightly the link between the vagus nerve (10th cranial nerve) and mast cell disease. Have you come across anything like that? I have cranial nerve damage in my right eye and ear. Anyways, I haven't read much about it but find it very interesting.

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Alaska Lone Wolf

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aklnwlf
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I think TC posted before about stimulating the vagus nerve. Or was it you?

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Alaska Lone Wolf

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Lymetoo
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I think there are some links I posted on this thread .. somewhere!

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Brussels
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I don't know how you all can live through this...

It spoiled my day, just to watch these awful videos.... informative, but I feel sick just to see how much suffering this causes...

It looks almost impossible to be true.

What the heck means 'allergy to people'??

If it's hard to convince people we have chronic lyme, I guess, convincing people they are allergic to anyone else sounds even more crazy.

Allergic to own hair growth?

Allergic to changes of temperature?

I used to look in disbelief when I first heard about allergy to sunlight or even, to pollen.

Now I got pollen allergy, a bit.

I would definitively look into the Esmog problem + gut bacteria.

Electrosensitive people tend to be very allergic (I'm in a forum, most people complain about multiple allergies), and most allergies start in the gut.

I see these videos of extremely bad allergic people, and they are using wi fi, smart phones, lap top computers on their laps!!!?

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Lymetoo
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Yes, some of us are highly sensitive to EMF's ..

I do think paying attention to our gut health is extremely important here.

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Brussels
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We know that EMFs disrupt enzymes (they simply make the synthesis of enzymes a problem).

What happens is that enzymes are permanently damaged (about 2/3 of proteins analyzed in a study were damaged by EMFs).

Low or defective enzymes = low metabolism, low immune system, low digestion, low detox, ...

You guys with severe allergies have HUGE problems in the gut.

Almost everything that happens in the gut depends on enzymes.

Lack of enzymes = nutrients can't be broken into smaller parts to be digested then. So they are still MACROMOLECULES when they pass through the gut to the blood.

That is what I understand.

there must be severe gut inflammation to 100% of cases of MCAD.

I guess, causes are like for lyme: toxins in the gut, maybe drug toxins too, heavy metals etc, + pathogens / parasites, + allergenic foods, all cause inflammation.

If it is not stopped, it goes like a snowball: cytokine cascading down the mountain.

I do feel sorry for you guys. I guess there is no way out if you don't concentrate 100% of your efforts to heal the gut.

EMFs in the environment will not help. I wonder if great part of this MCAD is not CAUSED by EMFs, due to damage of most enzymes...

I hope you are managing to go on, Tutu!!!

this thread is great, but it's very scary. [Frown]

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no_lyme_in_florida
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I am dealing with a major Mast Cell incident that has left me literally shaking in my bed for the last two months. I have no idea how I am going to make it through this.

Back in 2002 when I was infected with Lyme, and knowing what it was going to be like, including this Mast Cell Disease, I would have gladly chosen having both my legs amputated above the knee and confined to a wheelchair if given the choice of that or having the Lyme plus the Mast Cell stuff.

Not Lyme by itself, but with the Mast Cell horror that I am living, I wouldn't hesitate for a moment to choose the wheelchair if it meant being healthy otherwise.

Lyme is bad enough, but this Mast Cell stuff is a horror beyond description. I literally can't even eat a bite of anything without major reaction. Down 45 lbs in two months with no end in sight. I am not long for this world.

Damn this illness. Damn it with every ounce of my being.

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Lymetoo
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No Lyme .. Have you found a mast cell doctor? You MUST get on some mast cell stabilizers. I began with cromolyn sodium. It helps a LOT but can take some time to kick in.

There are also Xolair shots you can try and ketotifen. The keto may help you be able to eat.

I also take H1's and H2's daily to help keep reactions down.

Take action before it's too late!

Thanks, Brussels!

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Lymetoo
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Platelets and Anaphylaxis:

https://scienmag.com/igg-antibodies-activate-blood-platelets-and-contribute-to-the-severity-of-anaphylaxis/

Very interesting article!

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Lymetoo
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https://themighty.com/2018/05/mast-cell-activation-syndrome-affecting-friendship/?utm_source=engagement_bar

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Lymetoo
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Great article, complete with videos of explanation:

https://www.huffingtonpost.com/entry/meet-mcas-an-allergic-immune-system-disorder-linked_us_58f88d0ae4b01d4eb1e169a0

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Lymetoo
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https://www.lymedisease.org/lymesci-what-to-eat-mcas/

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Lymetoo
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Is a low histamine diet right for you?

http://mastcellsunited.com/2018/03/13/the-oh-histamine-diet/

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aklnwlf
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Great stuff TuTu!

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Lymetoo
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http://mastcellsunited.com/2018/08/10/fight-the-bite-summer-carrolls-mcas-story/

https://www.youtube.com/watch?v=b8HJf3cwujM&feature=youtu.be

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Lymetoo
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--

Living with MCAS can be challenging, but Shieterrick Melton eloquently relates how she's able to cope in the Q&A below.

1. How many years have you had MCAS? I received an official diagnosis this year. I was given a diagnosis three years ago, but that physician later retracted his diagnosis. I have had years of symptoms.

2. In your own words, what is MCAS? MCAS is the, "I'm allergic to life," condition. It sounds odd to describe a condition this way, but for those enduring the condition, including myself, it truly means being allergic to life and experiencing anaphylaxis at any given moment.

Technically speaking, MCAS is a condition that describes the misbehavior of mast cells, and provokes a histamine response. Many individuals experience anaphylaxis (like myself) and others they don’t experience it at all.

3. What is it like to suffer from MCAS? I don't suffer, I endure, MCAS. I choose to not suffer because there are people in life that suffer and deal with things so much worse than I; so I chose to endure.

To have MCAS means to fight for myself and standing up to medical professionals when they say “this is psychosomatic.” Having a condition that isn't common, though not really rare, means telling family and friends why you can and can't do something over and over until you are blue in the face. Enduring mast cell activation syndrome, is knowing that my life is unpredictable, and I have to be dependent on what my body tells me to do. Not being able to do some things becomes "the norm," and the definition of “normal life” doesn’t look the same anymore. Enduring MCAS has changed the way I am viewed by medical professionals, and enduring this condition means being in “the ring” and ready for a battle - a battle with anaphylaxis, nay-sayers, medical professionals, and with life. I'm constantly fighting to get back what has been stripped from me.

4. What specific changes have you noticed in your body from MCAS? I now have a heightened sense of smell. It's like having my own personal alarm from my nose, skin, stomach, and brain that says, “impending doom” is around you; escape quickly. Anaphylaxis is almost a daily occurrence for me, so my senses are always in overdrive. I also experience brain fog; it's like walking through party with a fogger on and not being able to see in front of you, although you can hear everything going on around you. And as a foodie, not being able to enjoy food or eat is saddening. Noticing changes in my skin and knowing when something just isn’t right, while being able to tell another reaction is going to happen, is interesting.

5. Has MCAS affected you mentally? If so, please explain. Mentally, MCAS is like an endurance race of, "How strong can I be before this breaks me?" It can causes depression, anxiety and the feelings of giving up - all things I refuse to give in to.

6. Where can someone get tested for MCAS? This is a matter of opinion, availability to necessary labs testing, and access to physician who is knowledgeable. With the proper equipment, a primary care physician can do the work up, although most times an allergist/immunologist does a work up. Testing can be done in an office or hospital setting depending on the testing being performed.

7. What would you say to someone who is currently suffering from MCAS? I would say a few things. First I would say, you are not alone, this is not in your head and reach out! Having any sort of medical burden can be hard to deal with, and even harder when you have a condition that seems likes others just won't, and can't, believe. So knowing you aren’t alone in this journey has been the biggest game changer when enduring MCAS.

This condition helps learn so much about yourself, and shows you what you are able to get through. There are mountains, valleys, and yes, even beautiful fields, ahead of you as you face the next challenge head. I would say, trust your instincts when something doesn’t seem right with your health care management, and move on.There is no point in trying to hold on to something that is detrimental to you.

Educate, educate, and educate some more. The more you know about what you are going through, and what to expect, or what medical professionals are saying, the more you are able to communicate to others the best ways to help you. There is so much to share with others; know you have a connection with others on this journey, ask questions and vent when needed.

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aklnwlf
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Heartbreaking to read about Summer Carroll's health struggles.

They Q and A post was helpful.

Thanks for adding new info TuTu!

[hi]

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Lymetoo
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I think this is a new article from The Mastocytosis Society.

https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/?fbclid=IwAR1mo9PPJ5EPoYjIONtyjNvesvkhybzXAO4lHFCCvcEd1d7cnFiOTm8I8f8

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aklnwlf
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Great stuff!

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Lymetoo
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Curcumin Ingestion Inhibits Mastocytosis and Suppresses Intestinal Anaphylaxis in a Murine Model of Food Allergy

https://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0132467&fbclid=IwAR2T3mgAtJp0PVWxMrjymu0WOwB2aHQeZgm5i3QDFWOiTXWg1Q0RdvFW1b4


I have taken it for about 15 years now and I can't do without it!

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aklnwlf
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Great info TuTu!

[Big Grin]

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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