posted
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
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
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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!
Posts: 9931 | From Maryland | Registered: Dec 2007
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
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.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6137 | From Columbus, GA | Registered: Jul 2004
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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)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
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.......
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6137 | From Columbus, GA | Registered: Jul 2004
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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.
posted
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.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
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.
Thanks for all of the links and helpful information!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
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 "
posted
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?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
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!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6137 | From Columbus, GA | Registered: Jul 2004
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This is so not fun! 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?
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
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?
Posts: 4 | From Massachusetts | Registered: Feb 2018
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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.
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