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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
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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--Lymetutu--
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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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--Lymetutu--
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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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--Lymetutu--
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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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--Lymetutu--
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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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--Lymetutu--
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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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--Lymetutu--
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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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--Lymetutu--
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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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--Lymetutu--
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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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--Lymetutu--
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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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--Lymetutu--
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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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Lymetoo
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Vaccines and MCAS

https://thevaccinereaction.org/2018/07/mast-cell-disease-and-vaccination-is-there-increased-risk/?fbclid=IwAR0Iy4WwChs9USee766h8CJ0DndxOkC2F1YjRI_jVmg3Up9PeUQ3kdQU1pU

Great article on MCAS .. and warnings about vaccines.

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--Lymetutu--
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Lymetoo
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https://rawlsmd.com/health-articles/how-to-cope-with-mast-cell-activation-syndrome?usource=lc&lctid=49099

(Dr Rawls)

[ 01-29-2019, 01:53 PM: Message edited by: Lymetoo ]

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--Lymetutu--
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Lymetoo
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Meet the girl who is allergic to almost everything.

https://people.com/human-interest/teenage-girl-allergic-to-almost-everything/

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--Lymetutu--
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TX Lyme Mom
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The Gut Health Protocol for eColi and Histamine Intolerance:

https://www.theguthealthprotocol.com/wp/e-coli-bacteria-and-histamine-intolerance/#more-2468

I don't know anything about this protocol because I just now stumbled on it by sheer luck. It looked too promising just to scroll on by, so I dashed straight over here to LymeToo's topic to post this link before I risked losing track of it.

In brief, it says that overgrowth of a certain strain of eColi can cause excessive histamine release and that there is a protocol and a product to control the problem.

Also, there is a book about it available on Amazon, where you can read over 100 reviews of the book:
https://www.amazon.com/The-Gut-Health-Protocol-Nutritional-ebook/dp/B00VCP5PKW/ref=as_li_ss_tl?ie=UTF8&linkCode=sl1&tag=theguthealthprobook-20&linkId=N2IPVF5U5K73FQU3

If this protocol has already been discussed previously, please feel free to delete this message.

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Lymetoo
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Thanks, TLM!


LYME disease and MCAS:

https://www.lymedisease.org/lyme-sci-mcas-agony/?fbclid=IwAR1kcuNuEqm7xXui9a_i_Fo6QSt6WNeeU_wi1ziVHa35io4O_LPfK45Gx9Y

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--Lymetutu--
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Lymetoo
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DNRS ... One of the most hopeful stories I've read about DNRS:

https://resilientlyrachel.com/2018/10/14/dnrs-my-6-month-update/?fbclid=IwAR3gX0hOC06jqQxVmDQVYXYn1PmE4gD1ytK9oQni15WLxGuI0Tyx5xzjjJA

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--Lymetutu--
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TX Lyme Mom
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I'm bumping this topic back up before it falls off the bottom of page one. I told someone about it today, and I want to be sure that it's easily found since she isn't very familiar with LymeNet.
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TX Lyme Mom
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ILADS 2018 Conference -- Two Speakers on MCAD: Lawrence Afrin, MD and Bob Mozayeni, MD -- detailed notes by BetterHealthGuy:

https://www.betterhealthguy.com/ilads-2018

Mast Cell Activation Syndrome (MCAS) may be the primary effector of many symptoms of tick-borne disease and infectious diseases.
A complex case of Polycythema vera and another with pure red cell aplasia and another with burning mouth syndrome ultimately mast-cell associated and improved with treatment.
Chromogranin elevation in a burning mouth syndrome patient could have led some to explore cancer, but this is also produced by mast cells.
The bulk of mast cell diseases are allergic diseases.
20% of the human population may have a mast cell issue; the numbers are increasing in our modern era due to genetic and environmental factors.
Mast cell proliferation is seen in mastocytosis; in MCAS they mast cells may be more activated but the number of mast cells is not generally increased as it is in mastocytosis.
KIT gene mutations are dominant in mast cell regulatory issues; found in almost every case of mastocytosis.
Neoplasia in mastocytosis is a problem for a very small subset; everyone else with mast cell disease has a problem with activation of the mast cells, not the number of mast cells.
Mastocytosis is the tiny top tip of the iceberg where substantial mast cell proliferation exists; in mast cell activation syndrome the problem is activation. Mastocytosis, cutaneous mastocytosis, uticarias/angioedema, then allergies and anaphalaxis are huge below the water line in MCAS.
Cells originate in the marrow, circulate, reside in vascular tissues with predominance in the environmental interfaces such as the skin, GI tract, and blood vessels. They synthesize a huge array of chemicals called mediators; many more mediators are produced beyond tryptase and histamine.
KIT is expressed on the surface of the mast cell ten times more than any other cell in the human body.
There can be many different triggers for MCAS including pressure, trauma, heat, cold, UV, and many others.
Many different mediators can be released such as pro-inflammatory cytokines, chemokines, proteases, growth factors (including TGFb1), vascular permeability and vasodilation substances, platelet aggregation and thrombosis substances, heparin, chondroitin sulfate, SOD, serotonin, and many others.
Far more patients symptoms suggest mastocytosis, but they do mot find mastocytosis when looking.
May be diagnosed as CFS, POTS, old age, demyelinating polyneuropathy, Fibromylagia, or many other conditions similar to several blind people being asked to describe an elephant.
Proposed criteria for MCAS includes a history consistent with chronic or recurrent aberrant mast cell mediator release, rise in tryptase within 4 hours of a flare (not easy to test and capture), and a response to mast cell-targeted therapy. It is a constellation of symptoms combined with lab evidence.
Estimated that 1-17% of the world's population is impacted; closer to 17% is probably the reality.
Increasing mast cell involvement in IBS, CFS, Fibromyalgia, diabetes mellitus, obesity, depression, and atherosclerosis.
Only one KIT mutation (D816V) can be tested for commercially at present.
Mast cells are 0.02% of the leukocyte population.
Mast cells produce more than 200 mediators.
There are multiple KIT mutations involved in MCAS; multiple mutated genes.
Each mediator has a unique array of direct and indirect, local and remote effects.
Inflammation is the universal constant with or without an allergic phenomenon.
It is multi-system and often perplexing.
Tryptase is not generally high (85% of those with MCAS have normal tryptase).
It is easy to get false negative test results; lots of nuances in testing.
Mast cell symptoms are over and over inflammation, inflammation, inflammation.
You can experience crumbling of the teeth with the best possible dental hygiene.In terms of MCAS and tick-borne diseases (TBDs), he shared:
TBDs are absolutely epidemic.
Infections of any type can trigger mast cells.
Infection can trigger a major escalation of MCAS which can be permanent
TBDs can trigger MCAS normally and abnormally/aberrantly.
TBDs can drive a worsening of MCAS even if the insighting stressor has been resolved; MCAS may continue indefinitely.
Some may have just MCAS and not an infection to begin with.
Infection-induced MCAS or escalated MCAS with or without chronic, active infection can exist.
It is more likely that there is one explanation at the root of these conditions rather than 50 different issues.
In terms of prognosis, most do well in the long run, have a normal lifespan.
There are many helpful treatments available for MCAS.
Treatment consists of identifying the triggers and avoiding them.
Drugs cannot gain control of the MCAS with persistence of exposure to the trigger.

Also:
Bob Mozayeni, MD spoke on "Mast Cells: Considerations in the Lyme or Bartonella Patient" and shared:

Disease results from the host response to the germ.
Chronic infections don't directly damage our systems.
Borrelia can trigger mast cell activation syndrome.
It can activate and then return to normal or remain in an activated state.
Mast cells are rare in the blood. They are inside the lymphatics, capillaries, gut, and skin.
Bartonella is associated with blood vessels and lymphatics.
Bartonella "tracks" is a better term for striae or what look like stretch marks.
Ehlers-Danlos Syndrome and Mast Cell Activation Syndrome can occur together.
He shared a paper with Bartonella and acquired-EDS type III which resolved with treatment.
Aspects of a "Herxheimer" may be mast cell activation.
Before implementing antibiotics, consider MCAS treatments such as H1 and H2 blockers.
Desloratadine may be helpful for Borrelia; even though it is antihistamine, it also is a manganese transport inhibitor and mast cell activation inhibitor. It penetrates connective tissue.
Ketotifen is being used to treat malaria.
Mast cells and microbes synergistically support one another.
Mast cells play a large role in the diseases that patients have.
Simple treatments may reduce inflammation.
Mast cell issues can be the primary problem or a reason for symptom persistence.

BHG's Disclaimer: While I attempted to accurately represent the statements of the various speakers, it is possible that the above contains errors or inaccuracies. If you have any corrections to the content listed above, please contact BHG (via link, above)

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Lymetoo
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Connection between MCAS and osteoarthritis

https://medicalxpress.com/news/2019-05-mast-cells-crucial-osteoarthritis.html?fbclid=IwAR3Dsh9oXCGdU85y88Ym_KXAEMwaV4woR4E_6v8rf2zKGpt6QNexYoMgZOc

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Mast Cells and Lyme .. The connection

https://tinyurl.com/y5dbvq5e

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http://www.mastcelldisease.com/?fbclid=IwAR3r2bTrF33_p7RjA_qzQ2hN2zIrB6UGWXtuoipFRe51qofuK7qIyBfrTpk

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Update to earlier posting

http://ohtwist.com/what-is-mcad/when-to-suspect-mcad?fbclid=IwAR1f5sRCyJFfEqzX7s9hIuop-yIH5Vh5RzBXJHUk9QvKeO6shWhPHPaFtAk

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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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TX Lyme Mom
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Lymetoo,
Since this MCAD topic is your baby, I'll let you decide if the link to this very well written article on MCAD authored by a well known ILADS LLMD has already been posted yet. (It's too lengthy to copy and paste the entire article here, thus just this link to it instead.) If it has already been posted here under this topic, then delete this message for redundancy.

https://www.treatlyme.net/guide/mast-cell-activation-syndrome-lyme

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I don't recall it .. but if it's already here, that's not a problem.

Thanks!

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Rivendell
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I am helped by quercetin - lots of it. Also Chinese Scullcap (a buhner herb) has strong antihistimine qualities.

I am assuming I have this or histamine sensitivity, always reacting to everything, terrible acid reflux that is only helped by diet and lots of Pepcid - which works with allergic responses.

--------------------
Herbal Treatments for Lyme and Co-Infections:
http://buhnerhealinglyme.com
http://www.tiredoflyme.com/the-cowden-protocol-for-lyme-disease.html http://www.sinomedresearch.org http://www.lymenet.org/SupportGroups/

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Brian Karr and Dr Tania Dempsey

https://www.youtube.com/watch?v=NZyMC0sKIRI&feature=youtu.be&fbclid=IwAR35UAjFUr8MrBJt5clI28m2DOZg3UKi-4Zz8spzJJ8QRtkDIagftAaTPjE

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TX Lyme Mom
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https://www.lymedisease.org/mast-cells-neurological-lyme/

LYME SCI: Can treating mast cells help neurological Lyme disease?
lymedisease.org/mast-cells-neurological-lyme/

January 7, 2020

Neurological Lyme disease

One night years ago, when my daughter was at her sickest, she asked me, “Is the chandelier hanging sideways?” With a curious look on my face, I answered, “No. Why?”

She said everything in the room, including the walls, looked tilted. Like in Whoville, the town in Dr. Seuss’s book “Horton Hears a Who!”

A month later, a prestigious children’s hospital diagnosed her with myalgic encelphalomyelitis (ME) and chronic fatigue syndrome (CFS). The doctors gave no other explanation for her laundry list of symptoms, including a recurring fever.

Little did we know that she had a raging infection inside her brain. Her nightly visits to Whoville continued for months. They finally stopped, after she was diagnosed with neurological Lyme disease and co-infections, and treated with antibiotics.

Patients with late-stage Lyme are no strangers to the neurological manifestations of this illness. Symptoms like brain fog, anxiety, depression and insomnia are common complaints in this population. But what causes all these symptoms? Inflammation. Like in many other illnesses, inflammation is the enemy.

At ILADS 2019, Dr. Tania Dempsey emphasized the importance of diagnosing and treating mast cell activation syndrome when it is suspected in the course of Lyme disease.

Mast cells are a complicated aspect of our immune system. When mast cells go haywire, they cause inflammation. (I’ve written extensively about mast cell diagnosis, treatment and how it helped solve the puzzle of my daughters illness.)

Dr. Dempsey has found that incorporating mast cell treatment into her Lyme protocols helps to reduce many of the symptoms of “Lyme brain” by controlling inflammation. In my daughter’s case, finding the right mast cell protocol was a critical step in getting her into remission.

Disseminated neurological Lyme disease
Neurological Lyme disease symptoms are largely invisible and difficult to quantify. Thus, many physicians write them off as psychosomatic, leaving these patients with no validation or treatment options.

Until recently, there hasn’t been a good measurement for patients with these long-standing neurological symptoms following treatment for Lyme disease.

Two separate studies published in 2019 by renowned researchers—one from Johns Hopkins University, the other from Harvard—have finally given us quantifiable, physiological reasons for these debilitating neurological symptoms.

The Johns Hopkins study revealed chemical changes and widespread inflammation in the brains of patients with persistent symptoms following treatment for Lyme disease. The Harvard study showed nerve damage (small fiber neuropathy) and decreased blood flow in the brains that may also contribute to dysautonomia. (Dysautonomia is a malfunction of the autonomic nervous system. It can cause a variety of troublesome symptoms.)

Left untreated, Lyme disease can spread to the nervous system. There are a multitude of diseases associated with neurologic Lyme:

Lyme meningitis – inflammation of the membranes that cover the brain/spinal cord.
Lyme encephalitis – inflammation inside the brain
Lyme myelopathy – inflammation of the spinal cord
Lyme cranial neuritis – inflammation of the cranial nerves
Lyme neuropathy – inflammation of the peripheral nerves
Bannwarth’s syndrome – “terrible triad” of meningitis, cranial neuritis and painful neuropathy

Nervous system basics
The nervous system has two main parts. The central nervous system consists of the brain and spinal cord. The peripheral nervous system includes all the nerves outside of the central nervous system. Lyme disease can infect either or both.

The central nervous system has a special protective layer called the blood brain barrier (BBB). It lets in nutrients like oxygen and glucose, and keeps out pathogens. Without the BBB, the brain would be open to infection from every germ that enters the blood stream.

A new study from UC Berkeley has found that a leaky BBB leads to memory loss and cognitive dysfunction in older mice. By giving these rodents drugs to reduce inflammation in their brains, the researchers reversed their signs of aging.

“When you remove that inflammatory fog, within days the aged brain acts like a young brain. It is a really, really optimistic finding, in terms of the capacity for plasticity that exists in the brain. We can reverse brain aging,” said one of the researchers, Professor Daniela Kaufer. Their study has profound implications for human brains too.

Mast cells: a gateway to the brain and nervous system
Mast cells play a major role in defending our bodies from pathogens. On the brain side of the blood-brain barrier, they serve as “universal alarm cells” that start the inflammatory cascade.

During infection of the central nervous system, the number of mast cells will increase, contributing to inflammation. During chronic inflammation, the BBB becomes more permeable—leaky– allowing mast cells to travel out of the brain. Unfortunately, the leaky BBB also allows large white blood cells and blood-borne pathogens into the brain.

Mast cells contain many different types of chemicals. The most abundant one is tryptase, a powerful enzyme released during mast cell activity. At ILADS, Dr. Theo Theoharides explained that tryptase acts almost like a “meat tenderizer.” As you can imagine, something that can “tenderize” the nervous system would be pretty destructive.

When mast cells become over-reactive, they create a continuous loop of inflammation that adversely impacts nerves and the nervous system.

In my daughter’s case, the mast cells became activated during her untreated infection. They remained so until we removed triggers, incorporated a low-histamine diet, and added treatment for mast cell activation syndrome (MCAS). After two years of a strict diet and MCAS treatment, it appears her mast cells have partially returned to normal.

Symptoms of neurological Lyme disease
The MyLymeData project asked Lyme patients who were still ill to identify their three worst symptoms. It turns out, the most frequently reported “worst symptoms” were neurological.

The most frequently reported neurological Lyme disease symptoms in MyLymeData included memory loss and cognitive impairment, sleep impairment, psychiatric manifestations, headaches, and neuropathy.

Infections within the CNS are much more difficult to treat, because most oral antibiotics do not cross the BBB. Even with IV ceftriaxone, the drug of choice for neurologic Lyme disease, many patients will be left with chronic symptoms.

While doctors don’t all agree about the cause of these ongoing symptoms, many ILADS doctors believe treatment should continue until symptoms have resolved. Some also report that intravenous immunoglobulin (IVIG) or plasmapheresis can also be helpful in treating infection-induced autoimmune encephalitis.

In addition, as we learned at ILADS this year, many doctors are seeing improved results by incorporating MCAS treatment into their Lyme protocols.

There is hope
As my daughter has shared, you can heal from Lyme and mast cell activation. Jesse Colin Young, Kris Kristofferson, Amy Tan, Yolanda Foster, and many others have reported that they got their brains back after being treated for Lyme disease.

As science sheds new light on disorders of the nervous system, the Lyme community stands to gain. My message to you is, don’t give up hope.


LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: Email her at: [email protected] .


(For list of symptoms, click on link at top of page.)
(For list of references, click on link at top of page.)

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New article!

https://www.verywellhealth.com/mast-cell-activation-overview-4583920

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5812374/?fbclid=IwAR3zdKKcdz1e7jFRa0nqCUaOBYMc2DwwTap4SdqmovaYCkCDELNOof1qr-I

Mast cells and nerve pain

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Mast Cell Activation Syndrome and Corona Virus

https://mastcell360.com/coronavirus-facts-and-tips-for-mast-cell-activation-syndrome-and-histamine-intolerance/

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Medicines that Increase Histamine Intolerance

https://alisonvickery.com.au/drug_allergy/?fbclid=IwAR13Y_A4y_bxDOV75_luLHFBRrGfwojIiYuR6TDXuYeXDsQUS_QNCyzD4vM

Alison Vickery

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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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Natural killer cells and MCAS

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6631774/?fbclid=IwAR11-VX7oqF91YCX7B-3B4iEzjhf1b8OqG88oegcLdhnTcnI7gudMbK-NXU

(implications for COVID)

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https://drbeckycampbell.com/mast-cell-activation-syndrome-postural-orthostatic-tachycardia-syndrome-and-ehlers-danlos-syndrome-what-is-the-connection/?fbclid=IwAR0QYBjABerH_x2vOXYk 6mVSmQ2cuie0UBfzWen0ewp6cs0z30KlSWkPqNc

EDS, MCAS and POTS are connected

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Mast Cell Activation Syndrome .. Immune System Gone Wrong

https://www.drlamcoaching.com/nem-therapy/inflammation/mast-cell-activation-syndrome-the-immune-system-gone-wrong/?fbclid=IwAR2KP3EJzoWj-dEhonWaOG36ajElmeLXLe9xR5jcmoBWd5V81TRDj3ZP VgE

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