Great link TuTu!
Posted by aklnwlf (Member # 5960) on :
They stock it at my local health food store. Solaray brand, so heading there tomorrow to pick one up TuTu. Thanks.
Posted by Lymetoo (Member # 743) on :
Hope it helps!
Posted by Lymetoo (Member # 743) on :
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."
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.
Posted by Lymetoo (Member # 743) on :
I am so glad you now KNOW! Are you still in shock? I was more shocked than I thought I would be.
I hope you can get on the Cromolyn.
Posted by aklnwlf (Member # 5960) on :
My histamine level was so high it surprised me. They told me it was over the phone but not the actual number results.
Was kinda shocking to hear the doc explain why he thought I had MCAD instead of other forms of Masto based on my test results and symptoms.
He went into a lot more detail about the disease and we talked about me going back to work, etc.
I'm giving Bacopa and activated Quercetin a shot hoping it'll give me similar results as the Cromolyn.
I'm still trying to come up with a battle plan for this one.
Posted by Lymetoo (Member # 743) on :
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?!
Posted by Lymetoo (Member # 743) on :
AK... I know it does affect the heart... the high histamine foods, the salicylates (if you have that issue), etc.
Posted by Lymetoo (Member # 743) on :
Great article for family and friends .. even for doctors.
[ 03-28-2017, 10:13 PM: Message edited by: Lymetoo ]
Posted by aklnwlf (Member # 5960) on :
More great stuff!
Posted by randibear (Member # 11290) on :
is this something drs believe in or is it like lyme????
Posted by Lymetoo (Member # 743) on :
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.
Posted by lpkayak (Member # 5230) on :
I am so late to this party. Thank you so much tutu for spreading the word
Posted by Pocono Lyme (Member # 5939) on :
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.
Posted by Lymetoo (Member # 743) on :
Yikes, Pocono. Don't overdo it.
Do the symptoms fit for you?
Posted by Pocono Lyme (Member # 5939) on :
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.
Posted by Pocono Lyme (Member # 5939) on :
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.
Posted by Lymetoo (Member # 743) on :
I used to take allergy shots .. way back.
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.
Posted by Pocono Lyme (Member # 5939) on :
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?
Posted by Lymetoo (Member # 743) on :
Go to your area's allergists' websites and see if they mention mast cell activation.
or .. go to "Mastocytosis and mast cell disorders -- integrative and holistic approach" .. on Facebook. They have a list of doctors in their files.
Posted by Lymetoo (Member # 743) on :
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.
Posted by Lymetoo (Member # 743) on :
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.
Posted by sammy (Member # 13952) on :
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.
Posted by lpkayak (Member # 5230) on :
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
Posted by me (Member # 45475) on :
Here is some more info on Mast cell activation disorder. It seems many people with Lyme have mast cell activation disorder:
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.
Posted by Lymetoo (Member # 743) on :
I'll PM you tomorrow.
Posted by aklnwlf (Member # 5960) on :
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!
Posted by Lymetoo (Member # 743) on :
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.
So are your tryptase and prostaglandin levels OK?
[ 02-28-2017, 01:00 AM: Message edited by: Lymetoo ]
Posted by aklnwlf (Member # 5960) on :
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!!!
Posted by Lymetoo (Member # 743) on :
Good .. I'm glad they are normal. It's good to have them checked if you ever end up in anaphylaxis.
I knew about the code.. thanks. We are grateful for that one!
Posted by Lymetoo (Member # 743) on :
Mast cell activation syndromes: definition and classification
"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."
Posted by Lymetoo (Member # 743) on :
Personal experience of someone with MCAD and another rare disease.
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.
Posted by Lymetoo (Member # 743) on :
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.
Posted by randibear (Member # 11290) on :
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.
Posted by Lymetoo (Member # 743) on :
Oh, yuck. I was going to come back for clarification on WHY. I am sensitive to many medications due to the chemicals in them.
I would be quite miserable without allergy meds.
Maybe you could try natural things like nettle tea for the anti-histamine effects?
Posted by Lymetoo (Member # 743) on :
Great info with links!
Posted by aklnwlf (Member # 5960) on :
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?
Posted by Lymetoo (Member # 743) on :
I would ask about it on the Mastocytosis group .. aren't you on there? I know Gleevec has been discussed.
I didn't know the code helped us with medications? Pretty super!
Posted by Lymetoo (Member # 743) on :
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.
Posted by Lymetoo (Member # 743) on :
Just be CAREFUL .. MCAS patients can react to ANYTHING.
So there is a link between Lyme and MCAD! As if one wasn't enough.......
Posted by Lymetoo (Member # 743) on :
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.
Posted by map1131 (Member # 2022) on :
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
Posted by Lymetoo (Member # 743) on :
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.
Posted by TF (Member # 14183) on :
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!
Posted by aklnwlf (Member # 5960) on :
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.
Posted by Lymetoo (Member # 743) on :
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)
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....... Posted by Lymetoo (Member # 743) on :
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.
Posted by aklnwlf (Member # 5960) on :
....trying a new herb, back later to give more info.....
Posted by Lymetoo (Member # 743) on :
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.
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.
Posted by Lymetoo (Member # 743) on :
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.
Posted by Lymetoo (Member # 743) on :
What?! Great info! So I need to add D3 to my supplements right?
Posted by unsure445 (Member # 15962) on :
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!
Posted by Lymetoo (Member # 743) on :
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.
Posted by Lymetoo (Member # 743) on :
They were "somebodies" too. (Can you die from Mast Cell Disease?)
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.
Posted by Lymetoo (Member # 743) on :
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.
Posted by Lymetoo (Member # 743) on :
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 "
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...
Posted by Lymetoo (Member # 743) on :
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.
Posted by unsure445 (Member # 15962) on :
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?
Posted by Lymetoo (Member # 743) on :
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?
Posted by aklnwlf (Member # 5960) on :
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!
Posted by Lymetoo (Member # 743) on :
I know. I was taking 1/2 Claritin, then 1/2 twice a day, then 1/2 Zyrtec, then two.
March, 2017
Posted by unsure445 (Member # 15962) on :
Thank you for the articles Lymetoo.
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?
Posted by Lymetoo (Member # 743) on :
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.
Posted by unsure445 (Member # 15962) on :
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?
Posted by Lymetoo (Member # 743) on :
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.
Posted by Lymetoo (Member # 743) on :
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?
Posted by Lymetoo (Member # 743) on :
YES ... Lyme, or any infection, can cause it to be triggered.
Even mold exposure can trigger it .. EBV, trauma, etc.
Posted by Lymetoo (Member # 743) on :
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.
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).
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.
Posted by aklnwlf (Member # 5960) on :
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.
Posted by aklnwlf (Member # 5960) on :
I think TC posted before about stimulating the vagus nerve. Or was it you?
Posted by Lymetoo (Member # 743) on :
I think there are some links I posted on this thread .. somewhere!
Posted by Brussels (Member # 13480) on :
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!!!?
Posted by Lymetoo (Member # 743) on :
Yes, some of us are highly sensitive to EMF's ..
I do think paying attention to our gut health is extremely important here.
Posted by Brussels (Member # 13480) on :
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).
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. Posted by no_lyme_in_florida (Member # 5537) on :
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.
Posted by Lymetoo (Member # 743) on :
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!
Posted by Lymetoo (Member # 743) on :
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.
Posted by aklnwlf (Member # 5960) on :
Heartbreaking to read about Summer Carroll's health struggles.
They Q and A post was helpful.
Thanks for adding new info TuTu!
Posted by Lymetoo (Member # 743) on :
I think this is a new article from The Mastocytosis Society.
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.
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.
Posted by TX Lyme Mom (Member # 3162) on :
ILADS 2018 Conference -- Two Speakers on MCAD: Lawrence Afrin, MD and Bob Mozayeni, MD -- detailed notes by BetterHealthGuy:
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)
Posted by Lymetoo (Member # 743) on :
Great stuff!
Posted by TX Lyme Mom (Member # 3162) on :
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.
I don't recall it .. but if it's already here, that's not a problem.
Thanks!
Posted by Rivendell (Member # 19922) on :
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.
Posted by Lymetoo (Member # 743) on :
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.)
Posted by Lymetoo (Member # 743) on :
LisaK, dizziness was one of my symptoms before diagnosis. It was getting pretty bad before being treated for MCAS.
Posted by Lymetoo (Member # 743) on :
Lisa, you need to get checked for POTS also. Hope you are doing OK.
This is shocking .. I wanted to put this here for safe-keeping but in no way am I suggesting any of us should smoke.
my son tried to quit smoking- he uses those vape types and he said he feels better from smoking. I wonder if it's the mast cell help!???
seems crazy, but I always try and realize we should never be surprised over anything any more, ha.
son was inutero when I got lyme. he does nothing to help himself, now almost 23. he says denial is the best medicine.
Posted by Lymetoo (Member # 743) on :
Could be, Lisa. You know it runs in families.
Posted by LisaK (Member # 41384) on :
[ 07-27-2021, 12:58 PM: Message edited by: LisaK ]
Posted by aklnwlf (Member # 5960) on :
TuTu do you mean mast cell issues run in families?
Posted by Lymetoo (Member # 743) on :
Yes, it can. Have you read Dr Afrin's book? Never Bet Against Occam?
Posted by LisaK (Member # 41384) on :
just got mast cell test back- liver biopsy.
dr. hasn't called and im getting antsy since it s now the weekend and I hate sitting not knowing. can't find anything on line about this .
Concerning mast cells this is what biopsy says:
"Very rare CD117 positive cells are identified in portal tracts, which appear negative for CD25."
Anyone know if "very rare" means rare to be there, or rare as in amount of numbers?
my last mast CD117 biopsy they actually counted and told us the amount of mast cells they found in the area. is that because that older one was stomach and this is liver?
or does this mean something entirely different than what I am thinking?
Posted by Lymetoo (Member # 743) on :
check private message
Posted by Lymetoo (Member # 743) on :
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