-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
To those who believe MCAD is rare, I would show them the last sentence of the abstract of this article, which reads:
"Mast cell activation disease is now appreciated to likely be considerably prevalent and thus should be considered routinely in the differential diagnosis of patients with chronic multisystem polymorbidity or patients in whom a definitively diagnosed major illness does not well account for the entirety of the patient's presentation."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
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Member # 5960
posted
Just found out today I definitely have MCAD due to very high levels of N Methyl histamine in my 24 hour urine test. Answers so many questions about my childhood fainting spells, etc. Nice to know what's going in my body.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
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posted
Think there's a link between MVP and MCAS? I went through all kinds of heart tests last December and January. Have the dizziness, heart pounding problem which oddly is becoming less frequent with my MCAS treatment. Go figure?!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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posted
SMART doctors believe in it. You DO have to find a well-educated allergist/immunologist. I understand that the younger doctors are the ones who know about it.
You can check your local allergy clinic's website to get a clue how they operate.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I am so late to this party. Thank you so much tutu for spreading the word
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Well, I just took Claritin, Zyrtec, Singulair and Pepcid. Also 1/2 Xanax. The other meds. aren't at my disposal.
I'll try just about anything.
Thanks for posting Lymetoo. I'd never heard of it.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Pocono Lyme
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Member # 5939
posted
Many of the symptoms. I've tried so many things for allergies. Sublingual immunotherapy, allergy meds.(just not together like this), nasal sprays, sinus surgery under general anesthesia, two sinuplasty surgeries, LDA until it was no longer available,...
I can go on and on. Docs won't do allergy shots due to risk of anaphylaxis. I doubt they'd help anyway.
This makes sense so worth a shot. And no shot needed.
BTW, I never was bothered by allergies, if I had any, before Lyme.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Pocono Lyme
Frequent Contributor (1K+ posts)
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posted
Oh. I forgot to add. The LLMD with the blog says he doesn't find it helpful to start with one and add as you go. Hope he's right.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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But now I have NO IgE allergies .. I just REACT to everything as if I had an allergy.
It's best to find an allergist who "gets it" .. If things get worse, you will have someone to turn to.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Pocono Lyme
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posted
I would have done the shots. Sublingual was the next best thing. The only thing I could get.
My IgE is still high at 500 but down from nearly 2,000. Normal being less than 100. It has taken more than a decade though.
I've been to every allergist/immunologist in the area and a few out of the area including out of state.
All tried multiple approaches except one out of state. She said I had a lot of sinus inflammation and recommended I see her friend. A psychiatrist. She then said she'd have to check with the nurse to see if sublingual immunotherapy would be appropriate for me. hmm
Needless to say, I never took that wasted trip again. Is there a way to find a good allergist versed in this?
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Interesting read TuTu. In my case I've had symptoms of MCAD long before I was diagnosed with Lyme or put on antibiotics. Nonetheless, scary that there is a link between the two.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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posted
I had a lot of problems crop up back in the early 90's. I kept getting bladder infections which were treated with Cipro several times.
Then I was diagnosed with IC. I had to quit teaching about 2 yrs after that.
My symptoms of MCAS have been around a long time though. It's hard to pinpoint exactly when.
I'm pretty sure I've had Lyme since I was a youngster. I was diagnosed with Lyme about 6 yrs after I quit teaching. I was only dxd because I found an LLMD by accident.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I have MCAS, POTs (along with hypotension) and Ehlers Danlos Syndrome. Also have a severe form of Common Variable Immune Deficiency. My Geneticist says that they are all linked.
Looking back, I can trace all of the conditions with their associated symptoms to my early childhood. The POTs symptoms did not show up until after my Lyme infection at 21 years old.
Posts: 5237 | From here | Registered: Nov 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
wow. ive just spent lot of time here im not dx but am sure i have mcas
ROBIN!!! are you there? i seem to be able to control most sx with diet EXCEPT i cant control the sx i get from touching new furniture
it is becoming a major problem i have severe osteo arthritis requiring surgery and just went thru a cancer surgery that affected upper body i NEED a recliner type chair i can get comfortable in to sleep i cant get in and out of bed until shoulder is replaced and have ongoing back and knee arthritis
i bought and gave away two chairs in the last year after failing to get them to off gas enough that i could sit in them
i gueess i foolishly just bought another chair...i am desperate...knee cannot be scheduled for awhile and it is falling apart(literally) and i need to not stress it getting up and down so i really need a lift chair but a recliner i could raise up on a platform would work
i had no idea i had mcas until i bouthgt the first chair and my skin turned red and burned and i felt like i was burning fire when near it
the new chair is doing the same it didnt do it in store but wonce in my house it started
also...when the chair is placed next to laptop or plastic totes or papers the burning toxin or what ever it is moves to those things
i have bought clothes, plastic totes, furniture. metal shelves all with this burning toxin only i can feel
if the item has the burning toxin when i buy it i must throw out item i have tried all kinds of ways to wash it and none work
if the item seems to catch the toxin from the original one...i am able to wash it...there are many combos of what i must do...if anyone else is going thru this please let me know
there is a group of ppl dealing with this in a new facebook group call Hell Toxin...i might have to help you get in if you are interested let me know
this is like science fiction...i never thought i would be dealing with this crazy stuff
talk to me ROBIN...you are first ex lymie i have heard of dealing with the touch thing like me
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Here is some more info on Mast cell activation disorder. It seems many people with Lyme have mast cell activation disorder:
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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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: 96222 | 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: 6138 | 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: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
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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: 6138 | 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: 96222 | From Texas | Registered: Feb 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
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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: 96222 | 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: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
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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: 6138 | From Columbus, GA | Registered: Jul 2004
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aklnwlf
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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: 6138 | From Columbus, GA | Registered: Jul 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
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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: 6138 | From Columbus, GA | Registered: Jul 2004
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