posted
Thanks for sharing. I have been trying to get my dr to send me to someone who is more specialized
in mast cell. I think this is part of my issues. I don't know if the light, sound and smell sensitivities may come from that but I have read
about migraines being triggered by this which I also get. The migraine dr that I see only gives meds to help with pain but admitted that they do
not seek what causes them. Our university hospital won't see me because I have lyme attached to my name and won't look beyond that. I was doing honey
bee stings which may have triggered something awhile back(rash), not so pretty so staying clear of that right now.(was also on gabapentin at the time too for a few weeks) It seems that I have an
assortment of methylation issues like many on here and I was thrown into a group on livewello with mast cell so I guess I have that although I don't
know what the name of this gene is. I have been thinking about the methylation mutations too and think I probably got them from my mom's mom who
died of breast cancer at 54. My mom is not very well either. My grandma's siblings died of various things at a young age, two from hodgkins in their teens, one from ms in her late 20's and several from cancer.
I am still suffering with lung stuff as well and fatigue. So hoping that something will come up, the right avenue. One can only take so many
antibiotics and every time I get a test for bart or bab or many other coinfections,it's a dead end. I do think my genes are making things very difficult for me. My regular dr's nurse
recently prescribed a combo of allergy meds with zirtec and singulair. I also started taking a histamine supplement. I have taken just singulair
with no help from it but maybe the combo. That is what I have noticed with migraine stuff that helps. You have to take the combination of things
horrible for you but kill the pain, usually but not always.Have not wanted to even post because I am not any better over the past several years even
with lyme help and don't want to be a discouragement. I hope that I can have some good news to report in the future.
Posts: 294 | From southwest mi | Registered: Dec 2012
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
My third Allergist appointment was about 30 minutes long, which in normal people time is at least 2 hours! Dr explained things in more detail and answered all of my questions.
My 24 hour urine test was abnormally high. Most people don't have such high levels (mine was over 1000). Told today it was 7 times higher than the high normal.
Cromolyn Sodium is for those that have gut issues as a major complaint. Was told I could try it if I wanted but my issues are vascular because my main symptoms are dizziness, fainting, flushing, anxiety, etc.
Same for the DAO and being Asian didn't effect my histamine levels.
My own body is producing super high levels of histamine.
My diet isn't much of an issue but he did say to monitor what I'm eating and if I have a reaction to not eat that particular food for awhile.
For my type of MCAD he recommended that I avoid histamine releasers citrus, kiwi, pineapple, plums, cocoa and chocolate, nuts, papaya, beans and pulses, tomato and wheat germ.
Since starting my treatment I'm feeling better and have no dizziness or fainting.
Well, onward and forward!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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posted
Good! .. I'm glad he told you about the histamine releasers and explained things better. Thank goodness you don't need cromolyn (I hope) since it's awfully expensive without insurance.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
My tryptase and prostagladins were normal and he went into more detail about the ratio between those and my histamine level. He talked to me about mutations and things to be aware of in the future.
My list is dated 2007 so I need to check on releasers.
Oh, did I mention MCAD has an ICD 10 code as of October 2016.
Was told it will make diagnosis and treatment more available.
Yay!!!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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"Once a year all the rare illnesses get their day of recognition on the last day of February. Rare diseases include any disease that effect fewer than 200,000 people, but collectively they are hardly rare.
According to the Rare Disease Day US website, 1 in 10 are diagnosed with a rare disease. Lumped into this category is the umbrella description of Mast Cell Activation Diseases (MCAD), which is what I would like to bring awareness to today.
Under the category of MCAD you will find Mastocytosis and Mast Cell Activation Syndrome (MCAS). These 2 illnesses are very related but different.
Mast cells are a type of white blood cell that release histamine, heparin, prostaglandin D2, tryptase, and other inflammatory immune responders. Under normal circumstances, mast cells support our immune system, but some individuals have mast cells that misbehave or are overproduced.
The release of the chemicals from the mast cell is called degranulation. When degranulation snowballs or the mast cell granules are “leaky”, too many of the inflammatory chemicals in the body can cause a whole host of symptoms and syndromes in multiple body systems that seem to be unrelated.
Before finding one of the few handfuls of doctors that understand this illness, sufferers go many years without answers, severe debilitation, and often poor treatment from medical professionals. The lucky ones are those who find an answer to this baffling condition.
Mastocytosis is extremely rare and it is where too many mast cells are made in the bone marrow. These individuals are at very high risk for anaphylaxis. Mast Cell Activation Syndrome (MCAS) is the other arm of MCAD and is much more common.
They make normal numbers of Mast Cells, but they are over-sensitive and behave badly. MCAD patients sometimes have idiopathic anaphylaxis and some have slow building sensitivities.
Every patient is different in presentation as they can affect every system in the body and they typically have normal lab results to everything, which is why these patients are dismissed by some doctors with psychosomaticism and treated as “crazy” by their peers.
Tryptase alone is not a good indicator of MCAS (only mastocytosis), although many are dismissed on this lab test alone as not having MCAS. Dr. Lawrence Afrin, author of “Never Bet Against Occam”, says in his book “MCAS is a chameleon that confounds diagnostic testing and treatments for other diseases.” Even allergy testing results can change from one time to the next.
Symptoms are chronic and confounded by standard tests. Dr. Afrin cites epidemiology research suggesting 14-17% of the general population is affected. We don’t hear about it because it has been recognized only recently.
Dr. Afrin explains that if a patient has multiple system issues without any lab defining the causes, don’t bet against Occam’s razor, it is most likely one cause explaining the complex patient."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I'm allergic to everything I think. I can't take anything over the counter tho. I have high bp and that stuff sends me into bad heart palps and all.
so since I can't take any medicine for allergies what am I supposed to do?
even certain foods cause me to start sneezing and I can't stop.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
You can get those meds compounded, but you would need a willing physician to write the order.
Not being able to take anything over the counter is a big red flag.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
can't take claritan, sineaid, any sinus, cold, allergy pills, sprays, capsules, nothing. sends my bp sky high with severe headaches, heart palps, short of breath. almost like a severe allergic reaction.
dr has told menever to take any otc medicine at all. which means I have to see him for anything.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Great info with links!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Thank God for the ICD-10 code for MCAS/MCAD! My allergist doubled my antihistamine and instead of $80 it was $4 and change!
You know TuTu I was rereading the post about Jennifer who was put on Gleevec. Her histamine level was high like mine and that's what helped her health the most.
Wonder if anyone here has tried it?
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Trying something new to fight degranulation. Course I'm no expert so just googling stuff and trying new things.
Bought loose, dried chamomile flower tops and dried oregano at my favorite health food store.
Chamomile has luteolin so I took a good healthy pinch and steeped for at least 20 minutes in 3\4 cup of hot water. Chugged that down and plan on seasoning my food with the oregano, also high in luteolin.
I know there's supplements that people are buying but there kinda pricey so I'm going the cheap route.
Loose chamomile and oregano were dirt cheap, both for about $2.00. Chamomile will last at least a week and oregano at least 2-3 weeks.
I'll let you all know if it helps with my symptoms.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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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: 96239 | 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: 6495 | 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: 96239 | 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: 6918 | 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: 96239 | 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: 6918 | 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.
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