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Virus activation and mast cell (Read 12589 times)
goldielove
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Virus activation and mast cell
06/22/12 at 12:48:08
 
I found out through a chronic fatigue center about a. Year ago that I have quite a few reactivations of viruses that I had in my younger years like Epstein Barr I have a high titer too that I also have the herpes one virus the one that gives u cold sores it's a very high titer and a few others . I have come too realize right before I get too feeling worse with this disease ( mast cell. ) I usually have canker sores in my mouth and my taste buds in the back of my tounge will become enlarged also my salivary glands under my tounge get enlarged and then I get very chilled but then very inflamed I can feel the heat in my body . When I am feeling better I notice I am cool and feel so good not feeling all the inflammation . I wonder now if every time for unknown reasons my viruses act up and the cause my mast cells too behave badly and then the whole horrible process starts till my cold sores go away does anyone know about any studies for this . I feel almost nl during the times my viruses are not flaring just wondering about the relationship if anyone knows
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PJP123
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Re: Virus activation and mast cell
Reply #1 - 06/23/12 at 15:17:52
 
I used to get cold sores and sores in my mouth all the time. I had epstein barr and herpes cold sores too.  Since I found out about mast cell activation syndrome and food sensitivities I have not had one cold sore or sore in my mouth.  No citric acid or ibuprofen for me.  I used to take ibuprofen all the time and realized this is what caused the cold sores.  It only took 51 years to figure out.

Also, speaking of chronic fatigue..I have suffered from this my whole life.
I have mitral valve prolapse but just found out last week that there is a mitral valve prolapse syndrome/dysautonomia.  I went to a cardiologist to diagnose dysautonomia and after all was said and done he said I had MVP.  I already knew that.  Then I asked if I had POTS and he said I'ld have to see a different doctor for that.  He said that MVP can make you have fatigue but never said that there are some MVP people with dysautonomia.

So I believe CFS is really dysautonomia.  I think your flushing, getting hot and feeling sick are mast cell degranulation and the cold sores are from foods you are allergic too.  You may not test allergic but you react to them (like me).  I would love to know if it all began with Epstein Barr
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Joan
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Re: Virus activation and mast cell
Reply #2 - 06/23/12 at 17:09:58
 
It can be useful to make a distinction between things to which we test "allergic" on traditional allergy tests (those that are IgE-mediated reactions),  and "triggers," which are substances or processes that trigger symptoms of mast cell degranulation, but don't show up on allergy testing.
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Lisa
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Re: Virus activation and mast cell
Reply #3 - 06/25/12 at 02:46:28
 
Remember, this is a genetic, clonal disorder.  Viruses may activate it, but the genetic defect was there first.  Those of us who can see this in our children and can look back to our own childhoods can find hints and indicators of it.   I had Mono only when I was 27, but I had allergic reactions to some things and even reacted to heat from as young as 3 years old.  What we thought was just isolated things, we now know was indication of MCAS when I was yet a child and when I look at my 3 children, I can see it now too.  

Now, as to virus activating the mast cells, you bet they do!!   Any kind of "threat to the body will activate mast cells.  Cold, Heat, Excercise, Physical Trauma, some Medications, radiographic contrast, some foods, emotional stress, physical stress, Viruses, Infections etc.   All of these things cause the MC to degranulate because our bodies NEED the mediators in order to help the body function properly and to protect it.  Without MCs we die!!!!  

Yet, when you have your MCs malfunctioning, then they are not doing their job correctly and are either releasing too much too soon or too late, or too little too soon or too late, or something that should not be released or nothing when it should be released or a combination of the wrong ones in the wrong quantity.  

So, when you are doing something to activate those MCs, then they are going to set off a chain reaction of many different things within the body and those things are going to also have a rebound affect in activating the MCs again.   For example, I was taking hypertension medication which ended up affecting my complement levels.  By their being too low, they were activating my MCs.  And just the activation of the MCs themselves ends up activating the MCs!   Itīs a vicious cycle.  But once you can pin down what your triggers are and avoid them and are properly medicated, the body settles down and you stop reacting so much.  

This is why our first defense medications are mast cell stabilizers like Cromolyn and Ketotifen!!!  The more stabilized those MCs are, the healthier you will be!!


Lisa
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WendyH
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Re: Virus activation and mast cell
Reply #4 - 06/25/12 at 04:29:28
 
Lisa,
That makes alot of sense.  If someone in my family gets a cold, flu etc I don't "catch" the virus it just triggers my mast cells.  In the last several years I have not gotten sick from any viruses except the sickness that the mast cell degranulation creates.

Wendy
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Lisa
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Re: Virus activation and mast cell
Reply #5 - 06/25/12 at 10:34:38
 
Well, when you consider that you have constant MC degranulation going on, your MCs are constantly releasing the mediators responsible for fighting viruses.  This is why some of us have a very hard time catching colds and flu and why our scarring process is in overdrive and we heal quickly.   Others of us have their immune systems deblitated and catch them more often than normal people, so it's an interesting process.

I went through an interesting situation last November.  I began getting urinary infections, this opened the door to my getting a case of Stomatitis.  This brought my immune system way down and I went through three more urinary infections within the next 6 weeks, one after the other!  I was a mess!!!   But until November, it had been 3 solid years without a cold or any viruses!!!   Now, I'm back to my normal with my family catching colds and I going steadily without even the hint of a sore throat or cold!  They look at me and wonder and all I can say is that this is perhaps the ONLY benefit of having masto, the constant degranulation ends up providing me a higher than normal resistance to viruses.  But once I get one, then it takes me down and others come piling on top one after the other.  

This is how masto works for some of us.


Lisa
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goldielove
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Re: Virus activation and mast cell
Reply #6 - 06/25/12 at 12:57:46
 
Very interesting when I think back too my childhood I did not have too many symptoms but I did get a very strange dermitis on my fingerers which would turn into water blisters. My children also had problems my daughter had allergic at least what we thought was allergies too every antibiotic she went on. But now looking back it usually occurred in the middle of the course of antibiotic treatment or when she finished her treatment she would get very bad hives and swelling in her face and made quite a few trips too the er. Now she is 24 and although healthy when she got the flu last year she broke out in Hugh hives even bf starting antibiotics and she limits what she eats as she gets bad problems with her stomach I am trying too get her into see an allergist too be tested she lives in Boston so she is lucky going too take her too see some dr in dr castells office. And my son had an issue three years ago he literally was allergic too his own body had too be on lots of medications but now seems ok I hope this is not an indicator for their future that they both might have this just not too sick from it yet. Ugh thanks for that info Lisa I wonder if there are any studies looking at multiple family members with some form of mast cell problems . I do know that I seem too get lots of canker sores in my mouth ever since I got this disease I never had them bf just cold sores as far as getting sick I hate too jinx myself but I am one who also gets over sickness very fast like a cold I never catch the flu and as a kid I was never sick. What u all said makes sense.
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Lisa
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Re: Virus activation and mast cell
Reply #7 - 06/26/12 at 00:09:57
 
That being allergic to one self is indeed an indication of the autoimmune form of MCAS.    Iīve tested positive on the ASST test - autologous serum skin test.  This is when your own serum is injected back into your subcutaneous skin.  I reacted to myself and totally blew Shocked the immunologistīs mind!!  He never imagined that this existed with masto!  

I hope theyīll do studies on us too, but Iīm not waiting around for that.  Weīve already begun testing my children and yes, they seem to each have masto in different degrees.   So now, when they start saying they donīt feel well with the heat, or they show some kind of reaction, I know what to do and no longer presume itīs something else.


Lisa
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kimtg68
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Re: Virus activation and mast cell
Reply #8 - 06/26/12 at 18:02:23
 
What a coincidence that this topic came up. I was plagued with chronic sinus infections and upper respiratory problems all my adult life. My last one was August of 2009 and thats when my mast cell symptoms began. Just last night I noticed my sinus's were becoming congested and today my ear began feeling plugged up. This is the first time in almost 3 years! Gosh I used to get these infections multiple time per year.
Isn't it bizarre that normally when you think of someone being sickly you would think they often become sick. But for some of us it is just the opposite.
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WendyH
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Re: Virus activation and mast cell
Reply #9 - 06/27/12 at 04:53:42
 
Before I started with the UP spots and masto I use to get pneumonia every single year, since the spots started then diagnosed never got pneumonia again.  Weird
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