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Mast Cell Doctor in North Carolina (Read 30528 times)
DrFrankLichtenberg
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Re: Mast Cell Doctor in North Carolina
Reply #15 - 05/21/12 at 02:50:54
 
evidence indicates that bone marrow does not contain
mature mast cells
do you no How  thay get in to the bone marrow


Part of what makes any call mature(red blood cell, white blood cell, Mast cell) is the communication it gets from the surrounding environment. When mast cells are developing, they mature in tissues at sites that they are programed to go to, sites of wound healing, and sites of allergic inflammation. When Mast cells mature in the bone marrow, it is because the cell thinks it is getting a signal telling it to become a mast cell. Many people with Mastocytosis have a mutation in KIT, which causes this errant signal. So finding mast cells in the bone marrow is abnormal, and is criteria for mastocytosis.
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Lisa
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Re: Mast Cell Doctor in North Carolina
Reply #16 - 05/21/12 at 04:53:27
 
DrFrankLichtenberg wrote on 05/21/12 at 02:47:07:
Can you say why these changes happen, or what can make us suddenly allergic to perfumes and products or to foods when we weren't reacting to them before hand?  Is there anything we can do about it?

What you are describing is vasomotor rhinitis, like a muscle spasm of the nose. Strong smells, barometric pressure changes, organic molecules can set this off. We will typically treat with intra-nasal antihistamines. Having a large Mast cell burden will make the responses much much worse. We are not sure why some people develop this, however it is likely do to an inflammed nerve in the nose.

I wish you the best of luck, and safety.



WOW!!!!!!!!!!  WHAT A TERRIFIC ANSWER!!! Cheesy   Thank you so very much for that explanation Doctor!  This makes impressive sense!!   I will forward your reply to my doctor.  She had given me a nasal spray with cromolyn in it back in January but didnīt tell me to use it on a daily basis and Iīve only used it sporatically.     Do you think that using it on a daily basis might help diminish this sensitivity perhaps?  I can't help but feel that this change was brought on by having be triggered by the really horrible perfume and that now, with each time I'm triggered, I'm getting more sensitive.  My reactions are not getting more severe, or I'd become suspicious of perhaps my autoimmune issues being involved here, for this is what has happened with the use of contrast.  We suspect that I may have somehow developed an IgG mediated reaction to contrast on top of it being a known MC degranulator, thus causing a double whammy effect.   But I do seem to be easier to trigger with smells and I'm getting suspicious that having once created a sensitivity, the threshhold is getting lower with each new episode.    Can this even happen?  This is what it feels like.


Thank you so very much again for that terrific reply!  If you are not a professor, I suggest you consider becoming one!  You have that talent of explaining very complex things in such a way that the student is able to understand!!   I'm a school principal and I know teacher material when I see one!!!  If I open up a med school (haha!)  You're definitely HIRED!!! Smiley


THANK YOU!!


Lisa
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Re: Mast Cell Doctor in North Carolina
Reply #17 - 05/21/12 at 05:23:22
 
Hello and thank you for joining our community. It is very gracious of you to take some time to answer questions from us. I often am asked what the difference is between Idiopathic Anaphylaxis (my diagnosis from Dr. Cem Akin), MCAS, and Mastocytosis. Masto is easier to set apart on its own, but the line between IA and MCAS is still tricky to define for me. Do you have any opinion on this?

I find it interesting that with my condition of IA, I seem to do much better than many on a day to day basis. I do pace my days very well to avoid my triggers and I am fortunate in that I have a good sense of what triggers my symptoms. Once I started basic daily meds (Zantac, Allegra, and Zyrtec), my symptoms changed from being debillitating to manageable/annoying. I don't lead a normal life like "normal" people in regard to energy level and feeling great all the time, but I feel good for a person with any type of mast cell disorder. The question is that for those with IA or MCAS, why can one person feel so well as I do and another feel terrible? Is it pure luck, awareness and avoidance of triggers, or something else?

Thank you for sharing your opinion on any of these questions.

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Re: Mast Cell Doctor in North Carolina
Reply #18 - 05/21/12 at 08:53:25
 
I share Lisa's scent issues.

I get systemic anaphylactic/oid reactions to scents. Currently it's any strong scent. I developed this months after anaphylaxis to CT contrast.

Can vasomotor rhinitis trigger this systemic type of response? I always thought of it as a localized phenomenon due to irritants, but maybe that's only in people without mast cell issues?

Thanks for your thoughts and time! They are very much appreciated!!

Smiley
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Re: Mast Cell Doctor in North Carolina
Reply #19 - 05/21/12 at 10:22:30
 
I'm wondering which nasal spray is the most effective for vasomotor rhinitis, Atrovent? Astelin? Nasalcrom? Steroid?  Thanks.

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Re: Mast Cell Doctor in North Carolina
Reply #20 - 05/21/12 at 10:49:45
 
This is interesting.
For what it's worth, I'll weigh in with my two "scents" Cheesy:
I don't seem to have much of an issue with smells. I can be around them for a little while without much bother. Although I did get rid of all perfumes after diagnosis, I was more afraid of risking
aggravation of hives, n TMEP spots. I have been on Nasonex for several years. The dr. told me that it "stops allergy irritants in the nasal pasages". Also interesting- I used to get sinus infections that were sooo annoying Angry Those too are a thing of the past.
Okay I'll shut up now- that was way more than 2 cents. Embarrassed
Good luck !!!
lori
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Re: Mast Cell Doctor in North Carolina
Reply #21 - 05/31/12 at 04:52:49
 
WOW!!!!!!!!!!  WHAT A TERRIFIC ANSWER!!!   Thank you so very much for that explanation Doctor!  This makes impressive sense!!   I will forward your reply to my doctor.  She had given me a nasal spray with cromolyn in it back in January but didnīt tell me to use it on a daily basis and Iīve only used it sporatically.     Do you think that using it on a daily basis might help diminish this sensitivity perhaps?  I can't help but feel that this change was brought on by having be triggered by the really horrible perfume and that now, with each time I'm triggered, I'm getting more sensitive.  My reactions are not getting more severe, or I'd become suspicious of perhaps my autoimmune issues being involved here, for this is what has happened with the use of contrast.  We suspect that I may have somehow developed an IgG mediated reaction to contrast on top of it being a known MC degranulator, thus causing a double whammy effect.   But I do seem to be easier to trigger with smells and I'm getting suspicious that having once created a sensitivity, the threshhold is getting lower with each new episode.    Can this even happen?  This is what it feels like.

Thanks for the great compliments!
The cromolyn nasal sprays take a couple of days of constant use to actually work. They have to build up to stablize the mast cells. Cromolyn based compounds can be added to any anti-histamine or steroid based therapy.
I don't know, but I think you mean an IgE(Immediate reaction) to contrast. IV contrast degranulates basophils based on the osmotic nature of the material. I'm not sure if it has been documented of a true IgE reaction because there wouldn't be a way to tell the difference. There is always the first person do define the condition......



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Re: Mast Cell Doctor in North Carolina
Reply #22 - 05/31/12 at 04:55:09
 
Joan wrote on 05/21/12 at 10:22:30:
I'm wondering which nasal spray is the most effective for vasomotor rhinitis, Atrovent? Astelin? Nasalcrom? Steroid?  Thanks.



We generally prefer Astelin, however steroids and chromlys can be added on.  We don't have a true therapy for this, avoidance of triggers is generally the best advice.

Ipratropium 0.06%  can be helpful for those copious and very thin secretions.
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Re: Mast Cell Doctor in North Carolina
Reply #23 - 05/31/12 at 15:28:17
 
DrFrankLichtenberg wrote on 05/31/12 at 04:52:49:
I don't know, but I think you mean an IgE(Immediate reaction) to contrast. IV contrast degranulates basophils based on the osmotic nature of the material. I'm not sure if it has been documented of a true IgE reaction because there wouldn't be a way to tell the difference. There is always the first person do define the condition......



Well, it wouldn't be the first time I end up doing a "first"  Roll Eyes,  it seems to be something I'm good at doing, Doctor.   I'm the first known masto patient to have my aortic aneurysm repaired and the 2nd to face open heart surgery.  I recently reacted to DMSA contrast for scintigraphy, a nuclear medicine exam, and I've a known autoimmune case which is affecting my kidneys and apparently has a major role in my becoming allergic to CT contrast.   One of the authorities is who raised the suspicion for an IgG mediated allergy for I am totally IgE negative for allergies.  

In 2004 I had contrast prior to my masto becoming active.   I had no reaction to the contrast.   In 2007, I had contrast again with an angiogram shortly after surgery when my doctors were suspecting a pulmonary embolism.  The crisis that made them suspect the embolism was in truth anaphylaxis, but they couldn't recognize it since my pressure was 160/110.  I didn't react to the contrast and the recent surgery was the last straw event which activated the hidden mast cell disorder.   Another CT 6 months later, looking for a carcinoid tumor, was a barrium swallow and I had strong reacting to the contrast with intense flushing and explosive diarrhea which lasted a full week.  Another 6 months later, after my angiologist saw the aortic aneurysm, she asked for another angiogram with contrast and in spite of having pre-medicated with the common anti-allergy meds I had a severe reaction with pressure of 220/110 and an immediate LOC - I was brought to and left to recover but about 20 minutes after having the contrast I went into a 3 hour long syncope which nobody was able to wake me from.  

Another 6 months later, another angiogram due to the size of my aneurysm.  This time we used the REMA protocols and they kept my pressure normal - it was beautiful! - but again 20 minutes after the contrast, I went into prolonged syncope, this time lasting 4 hours!  

We continued using these protocols with a cystoscope, endo & colonoscope, BMB and gallbladder surgery and with each and every single exam, I had no reacting on the table.   The prolonged syncope, however, did indeed follow and for each of those exams the syncope lasted 2 hours except for the surgery which lasted for 5 long torturous hours!   What we learned is that the syncope is a reflection as to how severe the degranulation is.  According to research, this is caused by intense vasoplegia.  My doctors have confirmed that I do indeed go into vasoplegia.   The protocols WORK and work beautifully, but why they don't seem to keep me from going into this syncope, we don't know yet.  Yet, from what we could see, the strength of the reacting is reflected through the syncope.

So, when I had to face yet another angiogram a year following the other two, we again used the REMA protocols without any concern to my safety.  It had not ocurred to us that I was growing increasingly more "reactive"  to the contrast.   We did everything as we had done before and yet this time I reacted to the contrast immediately upon injection!   I had intense flushing, intense dyspnea and abdominal pain with pressure of 180/110.  The REMA protocols didn't hold me and again, 20 minutes after the contrast I went into 6 full hours of syncope!

The following day my angiologist confirmed that this was without a doubt autoimmune in nature (I have an ANA of 1:320, hashimoto's an a positive ASST test). and that I have become increasingly reactive to the contrast.   She also confirmed the vasoplegia.

When I had to do a DMSA exam last August, I had researched this contrast and found that it was considered completely safe.  The radiologist doctor told me that there was NO NEED for concern because   NO ONE has EVER reacted to this contrast.  I didn't even pre-medicate for I felt that this was a SAFE exam for me, no different than a CT without contrast.    The doctor was SHOCKED  Shocked when he was called to attend me and saw for himself, the hematoma on my wrist where the contrast had been injected, the intense flushing, dyspnea, tachicardia and near syncope!  He about called the ambulance, but I kept him from doing so because I was combating it with my meds and had even hit in with prednisone.  

The suspicion that this is IgG mediated was raised by a masto authority, not my doctors.  We can't seem to figure that it could be anything else for IgE mediated it is not.

It would be my luck to break the rules once again, Dr. Lichtenberg!  Cry  It gets really OLD, really QUICK!    Such is life with a rare disease, you do some really weird things at times!


Lisa
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Re: Mast Cell Doctor in North Carolina
Reply #24 - 06/05/12 at 16:47:07
 
I owuld guess you do not know how thay get there
Part of what makes any call mature(red blood cell, white blood cell, Mast cell) is the communication it gets from the surrounding environment. When mast cells are developing, they mature in tissues at sites that they are programed to go to, sites of wound healing, and sites of allergic inflammation. When Mast cells mature in the bone marrow, it is because the cell thinks it is getting a signal telling it to become a mast cell. Many people with Mastocytosis have a mutation in KIT, which causes this errant signal. So finding mast cells in the bone marrow is abnormal, and is criteria for mastocytosis
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Re: Mast Cell Doctor in North Carolina
Reply #25 - 06/05/12 at 17:42:01
 
I get systemic anaphylactic/oid reactions to scents. Currently it's any strong scent. I developed this months after anaphylaxis to CT contrast.

Can vasomotor rhinitis trigger this systemic type of response? I always thought of it as a localized phenomenon due to irritants, but maybe that's only in people without mast cell issues?

Thanks for your thoughts and time! They are very much appreciated!!
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Lisa
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Re: Mast Cell Doctor in North Carolina
Reply #26 - 06/09/12 at 13:54:35
 
Dr. Lichtenberg,

For patients who are looking for a diagnosis, can you give us some information as to what you look for when a patient comes with tons of allergic reactions and a suspicion for a MCD but they don't have an elevated trytpase to confirm a MCD?  If you do find enough evidence for a MCD but not SM what is the diagnosis you then give?

The motive for my question is that some patients have wondered what your viewpoing is on MCAS and have asked me to ask you about this, Doctor.

Also, I was wondering if you can give us some perameters as to what you require to see a patient and what your contact information is please.

Thanks!

Lisa
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Re: Mast Cell Doctor in North Carolina
Reply #27 - 06/09/12 at 15:46:47
 
FYI His contact info is listed in his first post (on the first page).
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Lisa
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Re: Mast Cell Doctor in North Carolina
Reply #28 - 06/10/12 at 04:30:29
 
All I can do is plead mercy and understanding for this goof!  Iīm struggling with pressure of 90/60 and BPM of 51!  I go through these episodes of being almost prostrated, this is my 2nd day.  I end up feeling good and then pushing my limits and then get into this kind of a funk for about 2 or 3 days and then, after my body has recuperated, my BP returns to normal and so does my heart rate and I'm able to function again.   My doctor says that when I'm like this that my pressure is more like a regular masto patient.  This is something which has become much more common ever since my open heart surgery to remove the aortic aneurysm.  We think that in having removed the damaged tissues, which contain MCs within that tissue, that this allows for my pressure to be more typical to masto.  Not only has the denervation process allowed my pressure to behave more normally, but it also allows for the mediator release to push my pressue down instead of keeping it normal or elevated.   Now I only get the hypertension when I'm in acute degranulation.  So, she suspects these situations to be MC mediated, but more like leaking instead of the shocking which is more my typical behavior.

Weird!

So, sorry for the goof, I'm not thinking straight..

Lisa
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Re: Mast Cell Doctor in North Carolina
Reply #29 - 06/10/12 at 16:11:26
 
I figured you were having a masto moment Wink
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