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» LymeNet Flash » Questions and Discussion » General Support » MAST CELL ACTIVATION DISORDER (Page 2)

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Author Topic: MAST CELL ACTIVATION DISORDER
Lymetoo
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Just be CAREFUL .. MCAS patients can react to ANYTHING.

[group hug]

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Lymetoo
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Hot off the presses:

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

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aklnwlf
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So there is a link between Lyme and MCAD! As if one wasn't enough.......

[Frown]

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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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No kidding.. UGH... I knew three years ago when I got on the MCAS FB group and all these people were saying they had Lyme, I knew I was in the right place.

[Frown]

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map1131
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Tutu, some in our local support group that considered themselves cured have now become victims of MCAS.

It just breaks my heart. I mean literally scares the you know what out of me. I wish you the best in finding your well health again.

I'm trying to educate myself, so I might recognize folks who join our support group that are also experiencing sx from this illness.

Pam

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"Never, never, never, never, never give up" Winston Churchill

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Lymetoo
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Thanks, Pam. I'm sure you will eventually run across someone with it. I pray it won't be you.

It is way worse than having Lyme once it gets out of control.

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TF
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Lymetoo, I know a woman who is suffering with hives for months. No doctor can figure out the cause. She said they get worse with stress.

I have referred her to the various sites on your MCAS thread for her to see if it sounds like MCAS. And, I gave her a few sites that tell how it is treated.

Since she lives in Maryland, she could very well have lyme disease and not know it.

I also told her to try avoiding foods high in histamine and salicylates.

Is there anything else I should tell her? She is beside herself with these hives. Even a very expensive med that her insurance company approved is not helping her hives. (Evidently it is given by injection.) They are everywhere including face and scalp.

Poor lady has a surgery scheduled for the end of the month. Can she safely have that if she has out of control MCAS?

Does this sound like MCAS to you?

Also, how does she go about finding a doc who knows a lot about MCAS?

Thanks in advance. The education you are giving us on this disorder is wonderful and very valuable.

So sorry to hear that you are now suffering with this!

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aklnwlf
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OK,just stopping back to say ah...no to the chamomile decoction I did for 2 days. I have a horrible facial rash and think that could be the culprit.

Check back in soon.

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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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Stay away from anything exotic .. [Big Grin]

Great blog on MCAS:

http://better-together.co/why-should-you-care-about-mast-cell-activation-disorder/

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Lymetoo
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Anaphylaxis and Mast Cell Reactions

http://www.mastattack.org/2016/06/anaphylaxis-and-mast-cell-reactions/

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Lymetoo
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Histamine and Adrenal Fatigue Syndrome

https://www.drlam.com/blog/histamine-and-adrenal-fatigue-syndrome/4642/amp/

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Lymetoo
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SALICYLATES .. WHICH DEGRANULATE MAST CELLS

https://babyfoodsteps.wordpress.com/2011/07/25/s-is-for-salicylate/

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Lymetoo
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GREAT COMPREHENSIVE ARTICLE

https://www.askdrmaxwell.com/2017/05/mast-cell-activation-syndrome/

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Lymetoo
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I'm not sure if this one is already on this thread. Really good article.

https://themighty.com/2017/06/what-its-like-to-have-mast-cell-activation-disorder-mcad/

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Lymetoo
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Things That Plague Us

http://mthfrliving.com/health-conditions/mast-cell-activation-disorder-histamine-intolerance/

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Lymetoo
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http://dianacrowscience.com/nih-scientists-identify-genetic-disorder-affect-1-20/

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Lymetoo
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Great article!

http://www.researchedwellness.com/mast-cell-activation-syndrome/

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jory
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Thanks tutu! Shared [Smile]
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Lymetoo
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Mast Cells and Neuropathic Pain

Mast cells in neuropathic pain: an increasing
spectrum of their involvement in pathophysiology. https://www.ncbi.nlm.nih.gov/pubmed/28688228

MCs and their secreted mediators modulate inflammatory processes in multiple CNS pathology
Mast cells and nerves are in constant contact with each other in both physiologic and pathological situations. Many lines of reasoning suggest that mast cells and nerves may be seen as a functional unit. It is well established that there is an anatomic association between mast cells and nerves in most tissues. (1)

The communication between mast cells and nerves via cytokines has not received much attention. TNF is involved in changing neuronal cell function because it can modulate the susceptibility of neurons to electrical stimuli (1)

They share a number of activating signals, Furthermore, both mast cells and nerves respond to stimulation by degranulating preformed mediators.

Neurodegeneration is the progressive dysfunction and loss of neurons in the CNS, is the major cause of cognitive and motor dysfunction. (3)

Mast cells are also found in the brain, on the brain side of the blood-brain barrier (BBB) There is substantial evidence that mast cells can penetrate the BBB and break its integrity. Mature mast cells themselves can migrate from blood to brain. (3)

A plethora of inflammatory mediators such as histamine,
heparin, tryptase, cytokines and more are secreted from mast cells in the
process of degranulation and these chemicals have been associated with neuropathic pain nerve injury , or non- related nerve injury . You don't necessarily have to be injured for your mast cells to start an attack on peripheral nerves . Any trigger might also induce a migration.

Yngve Olsson was the first scientist who reported the
role of mast cells in neuropathic pain, (1967). The same
scientist also reported the increased number of mast cells
in the endoneurial connective tissue (2)

Olsson a leader in mast cell complex, chronic pain has blazed the trail and has shown that the presence of compound 48/ 80 has induced mast cell mediator release leading to subsequent pain located around the nerves (2)

Mast cells are important first responders in protective pain responses that provoke withdrawal from intense, noxious environmental stimuli, in part because of their sentinel location , they are versatile gatekeepers of pain, but these cells maybe stuck in maladaptive pain behavior sequences. with their constant state of degranulation in MCAS patients, one has to ask ;are many pain related disorders really a part of MCAS?

Clinical pain disorders associated with mast cells (4)

Migraine [4,5]
Pelvic and bladder pain [6,7]
Atopic dermatitis [10]
Inflammatory bowel pain [19, 20]
Fibromyalgia [15]
Vulvodynia [11–14]
Complex regional pain syndrome [8, 9]
Self-injurious behavior associated pain [16]

References;

1- Significance of Conversation between Mast Cells and Nerves
Hanneke PM van der Kleij1 and John Bienenston https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877069/

2-Mast cells in neuropathic pain: an increasing
spectrum of their involvement in pathophysiology

3- Mast Cells and Neuroinflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4282993/

4- Mast cells: versatile gatekeepers of pain https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4171343/

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Lymetoo
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PESTICIDES AND MAST CELL DISEASE

http://www.mastcelldisease.com/mast-cell-disease-pesticides-more-evidence-my-own-experience/

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aklnwlf
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As kids me, my older sister(deceased) and younger brother along with other kids in the neighborhood used to run behind the DDT trucks that were spraying for insects on military bases. This was in the 60's and I don't know if this was common in nonmilitary neighborhoods. We enjoyed running through the ' fog '.

My sister passed away at 55 from vascular issues not heart related, I have diagnosed MCAD and my brother has chronic severe migraines and has lived off BC and Goody powders for years.

I've been thinking for months now that we all have MCAD. My brother at 56 developed psoriasis, which I did at 53.

Oh no....... [shake]

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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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You probably do. I grew up in Houston, where they sprayed for mosquitoes quite often.

I don't remember running behind the trucks, but I know of many I grew up with said they did.

All I know is that I've had plenty of exposure to pesticides.

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aklnwlf
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....trying a new herb, back later to give more info.....

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Alaska Lone Wolf

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Lymetoo
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WOW

https://undark.org/article/mystery-diseases-syndromes-health-care/

Also .. a letter from Dr Afrin .. There's a big controversy about his medical partner's TV interview. This does contain quite a bit of good info on MCAS.

http://mastcellresearch.com/2017/07/26/commentary-dr-lawrence-afrin-regarding-recent-affairs-wednesday-july-26th-2017/

[ 07-26-2017, 05:16 PM: Message edited by: Lymetoo ]

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aklnwlf
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Good stuff TuTu.

OK, so I'm now trying horse chestnut seed extract from Now at 300 mg twice a day. BTW, just says horse chestnut on the label.

Still reading on the benefits in regards to MCAD.

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Alaska Lone Wolf

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Lymetoo
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HEAT INTOLERANCE, anyone?

http://www.duluthnewstribune.com/news/health/4305394-medical-hell-duluth-man-blames-mast-cell-disorder-intense-allergic-reactions

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aklnwlf
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Hey TuTu that link is redacted.

Also wanted to let folks know that the horse chestnut is helping me.

Was having some issues with pain in palms and soles which is better. Also calmer and heart not pounding so much.

Seem to have more energy too.

Still don't quite understand how it's helping so still googling.

So far horse chestnut has the most noticeable benefits out of all the other herbs I've tried.

[Big Grin]

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Alaska Lone Wolf

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Lymetoo
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http://www.corebrainjournal.com/2017/07/133-mast-cell-activation-syndrome-autoimmunity-afrin/

(The link posted on Aug 1 is still working)

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aklnwlf
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Great info!

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Alaska Lone Wolf

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Lymetoo
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Mast Cell Activation Syndrome

(nightmare case .. Johanna)

https://www.youtube.com/watch?v=NpFJw-iO7Yg

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Lymetoo
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Great list of symptoms:

http://www.mastocytosis.ca/en/diagnosis/signs-symptoms

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aklnwlf
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That poor young couple!

Also scary to see how many things on the list of symptoms.

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Alaska Lone Wolf

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Lymetoo
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Ask Dr Maxwell .. MCAS .. Great article

https://www.askdrmaxwell.com/2017/05/mast-cell-activation-syndrome/

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Lymetoo
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http://globalnews.ca/news/2185647/utah-man-has-rare-disorder-that-makes-him-allergic-to-food/

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Robin123
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Mine got triggered from 24 hours of exposure to chemicals that burned in a fire next door. Suddenly I couldn't touch materials anymore without reacting with hives. I have very little clothing material I can touch.

So just trying to figure this out physiologically - the liver has to process toxins, so I'm guessing it got overwhelmed. Toxins also get stored in fat tissue.

So then I would think that more people would get sick like this after exposure to chemicals. Any more info on this happening?

Btw, foods don't seem to affect me.

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Lymetoo
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I know they talk a lot about livers being overloaded on the Salicylate group. Everyone there is chemically sensitive.

You are SO fortunate to be able to eat what you want. My limitations are life-changing.

I was also exposed to chemicals from a fire across the street a few years ago. I was only outside maybe 5 minutes. When I came inside I shut off our air-conditioner. So I hope not too much damage was done.

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Lymetoo
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Describing MCAD to others:

(TMS Society info)

http://www.mastocytosis.ca/en/mast-cell-disease/describing-the-disease-to-others

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Lymetoo
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https://www.drtaniadempsey.com/single-post/Mast-Cell-Activation-Syndrome-MCAS-A-Hidden-Epidemic

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Lymetoo
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To read later:

http://www.mastattack.org/2016/06/effect-of-vitamin-d-on-mast-cells/

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aklnwlf
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What?! Great info! So I need to add D3 to my supplements right?

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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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unsure445
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I have never had any type of allergies or sensitivities, had some on and off histamine issues with the lyme and co-infections which turned into MCAD a few months ago.

Its pretty horrible and discouraging. [Frown]

Thanks for all of the links and helpful information!

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unsure445

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Lymetoo
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I think so, AK. I need to read it again. I used to take it, but stopped when the people on the Mag group said not to take it unless you get all the testing. I know one test showed that I was low in D3.

unsure .. I used to have allergies and got shots, but really was not bothered by them in later years ... at least not severely. Now this.

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Lymetoo
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They were "somebodies" too. (Can you die from Mast Cell Disease?)

http://www.mastattack.org/2017/10/somebodies/

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unsure445
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Lymetoo, what do you think triggered/began it for you?

I am really sorry you are dealing with this, its rough.

I think I am going to focus on the positives I have read around diet being so helpful. Otherwise, wow, so depressing.

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unsure445

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Lymetoo
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A very stressful series of events all in one week .. which was preceded by nearly two years of eating basically a paleo diet which was high in oxalates and salicylates.

Now I can't handle either group of foods .. plus anything high in histamine.

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Lymetoo
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https://www.drtaniadempsey.com/single-post/Ask-The-NY-MCAS-Doctor-Mast-Cell-Activation-Syndrome

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Lymetoo
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https://www.medpagetoday.com/resource-center/anaphylaxis-advances/mast-cells/a/46719

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aklnwlf
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Good info in those links!

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Alaska Lone Wolf

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Lymetoo
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http://www.iamast.com/

(from Aklnwlf)

DATABASE for finding doctors who will diagnose and treat MCAD:

https://tmsforacure.org/physician-database-info/

[ 10-15-2017, 09:42 PM: Message edited by: Lymetoo ]

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Lymetoo
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https://www.geneticlifehacks.com/notes-about-histamine-and-mast-cells/

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Lymetoo
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MCAS is "the non-neoplastic cousin of the rare hematologic disease mastocytosis, mast cell (MC) activation syndrome-suspected to be of greatly heterogeneous, complex acquired clonality in many cases-is a potential underlying/unifying explanation for a diverse assortment of inflammatory ailments. Via - Dr. Afrin "

http://www.ncbi.nlm.nih.gov/pubmed/26850903

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aklnwlf
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Great new info!

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Alaska Lone Wolf

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Lymetoo
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They are working on improving the test for histamine intolerance:

https://healinghistamine.com/diagnosing-histamine-intolerance/?inf_contact_key=8e7894a5a67047c4d7334d753e1d869d77497775819796396dbe59075dc64a18

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unsure445
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Thanks Lymetoo. I am still waiting on my urine histamine results but there is no doubt its what I have going on.

Fortunately I am not as bad as I was a month ago, starting to be able to eat a few more foods...

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unsure445

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Lymetoo
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Don't worry if it comes back negative the first time .. it could. You still know what to do!

I'm so glad that you are getting results from the diet. I feel better this week after beginning Xyzal twice a day.

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unsure445
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Tests were negative which surprises me because I was a mess with symptoms that day, had eaten "normally" to get an accurate picture.

It took almost 2 weeks to recover from the one day of eating a little avocado, spinach, and a few nuts

So its common that the 24 hour urine test comes back negative?

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unsure445

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Lymetoo
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It happens!! What do you know about this particular lab? Are they used to doing this for the doctor? Did you keep it refrigerated the entire time? Did you transport it on ice?

I didn't know until later than even refrigerating each cup full and THEN adding it to the jug is a good thing to do.

Then .. Did the LAB keep it refrigerated and SHIP it on ice?

Have you looked at salicylate sensitivity also?

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aklnwlf
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I'm on Xyzal twice a day too! On top of everything else I'm taking. When I first started I did just half a pill because it made me so tired. Now look at me.....taking two a day!

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Alaska Lone Wolf

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Lymetoo
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I know. I was taking 1/2 Claritin, then 1/2 twice a day, then 1/2 Zyrtec, then two.

Then one zyrtec a day, then 2 as needed.

I hate this!

New article on mold and MCAS:

https://www.hoffmancentre.com/2017/11/mast-cell-activation-syndrome-histamine-immune-system-runs-rampant/

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Lymetoo
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benadryl .. and more...


http://www.mastattack.org/2014/10/how-to-get-out-of-a-reaction-cycle/

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Lymetoo
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Dr Afrin's 20/20 Research Study

http://mastcellresearch.com/2020-research-study/

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Lymetoo
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Shockers and Leakers:


http://www.mastcelldisease.com/mast-cell-disease-leaker-vs-shocker/

March, 2017

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unsure445
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Thank you for the articles Lymetoo.

This is so not fun! [Frown] I am not an over the counter medicine person at all, rarely take Advil or Tylenol etc... and I now down antihistamines like they are candy...

Hoping my immunologist has more tricks up his sleeve.

How are you doing these days? Are you pretty stable or up and down with symptoms?

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unsure445

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Lymetoo
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Ask him for cromolyn sodium. It helps stabilize everything. It's very good for stomach issues.

I'm sort of stable, but I'm so limited in what I can safely eat.

I hate taking medicine!

Have you tried taking an H1 and an H2 each day? I take Xyzal and Pepcid twice a day.

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unsure445
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I hear you with the food and so much of the offenders are healthy. If a flax seed crosses my lips I feel it in 20 minutes!

I take Zantac and Claritin and Allegra, sometimes Benadryl also if I am trying to stop a big hit of symptoms. Lot' of quercetin too.

Have you taken Cromolyn?

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unsure445

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Lymetoo
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Yes, I've been taking cromolyn for about 18 months. It really helps.

I can't take quercetin .. and I usually avoid benadryl. Even my 23andme says no benadryl for me. I must have had intuition on that one.

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Lymetoo
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http://thecoffeeklatch.com/dr-theoharides-what-do-mast-cells-mast-cell-activation-disorder-have-to-do-with-pain-fatigue-allergies-and-autism/

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Lymetoo
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https://www.self.com/story/debra-messing-hid-her-allergies

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Lymetoo
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MCAS Webinar

https://vimeo.com/246313546

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Lymetoo
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GREAT ARTICLE LINKING MCAS TO LYME

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

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katherine121
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Sorry to ask what seems like a dumb question, but what is the Lyme connection here?

I have a friend who I suspect has Lyme disease, but she also has MCAS. Do people frequently have both?

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Lymetoo
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YES ... Lyme, or any infection, can cause it to be triggered.

Even mold exposure can trigger it .. EBV, trauma, etc.

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Lymetoo
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Lisa:

Dr. Maria Castells of Brigham & Women's Hospital lectures on mast cell activation syndrome at the CSF Greater Metropolitan Washington Area Chapter meeting on March 19, 2014. Watch to learn more about how mast cell proliferation can cause gastrointestinal issues, allergies, etc. and how physicians assess and manage those affected.

https://www.youtube.com/watch?v=JdbkviPUmg4

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terv
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Has anyone had any success with DAO?
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Lymetoo
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I am sensitive to salicylates, so I haven't tried it. I did try growing my own pea sprouts for the DAO. Fail.

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