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Mast Cell Doctor in North Carolina (Read 15219 times)
DrFrankLichtenberg
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Mast Cell Doctor in North Carolina
05/10/12 at 08:12:53
 
Hello,

My name is Dr. Frank Lichtenberger MD, PhD. I recently finished my fellowship in Allergy/Immunology at the National Institutes of Health. Dr. Dean Metcalfe was my research mentor in the Mast Cell Biology section of the Laboratory of Allergic Disease.

I have opened a practice in Statesville, North Carolina, under the Allergy Partners Group practice.

My practice is accepting new patients, and I wanted to make myself known to your community. I have seen quite a few patients with Mast Cell disorders as a Fellow at the NIH, and would be very happy to continue to care for these special patients now that I am in practice.

My contact information:
Dr. Frank Lichtenberger
Allergy Partners of Statesville, NC
1703 Davie Ave
Statesville, NC 28677
Office: 1-704-873-5055

Thank you for allowing my to be a part of your group. I would be happy to answer any questions.

-Frank




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Riverwn
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Re: Mast Cell Doctor in North Carolina
Reply #1 - 05/10/12 at 14:05:37
 
Hello Dr Lichtenberger!
It is such a joy to welcome you here. Your back round is impressive with experts we recognize in the Masto Medical community and it is heartening to know you will expand that field and be there for those of us who live with this disorder. As you know there are few experts we can turn to and know they are truly versed in Mast Cell Disorders. Thank you so much for joining those ranks and giving us a real choice in health care Smiley We welcome you to this board and hope the future truly holds benefits for us all.

We have a few questions we would like to ask you and we thank you in advance for letting us have access to your opinions and expertise.
Sincerely
Ramona
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Joan
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Re: Mast Cell Doctor in North Carolina
Reply #2 - 05/10/12 at 19:11:09
 
  Welcome to the forum!

  It's always nice to know there's another doctor treating mast cell patients.  In what specific aspect of MC disorders was your research at NIH, if you don't mind elaborating?

  Hope you have the opportunity to help a lot of mast cell patients in your new practice!  We're a determined bunch, and, as you may know, many of us are willing to travel long distances to see someone knowledgeable.

  Thanks for your offer to help!
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Julie M.
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Re: Mast Cell Doctor in North Carolina
Reply #3 - 05/11/12 at 02:30:40
 
Welcome aboard Dr. Lichtenberger and many thanks for reaching out to us. There are so few physicians that fully understand MC disorders, it is great to be able to add one more to our very short list!

I live nearby NIH and as such had emailed Dr. Metcalfe with the hope that he could suggest a local allergist who was familiar with MCAS. (My diagnosis.) He very kindly responded and referred me to one of his former NIH colleagues in the area who has a private practice.

The reason I mention this is that in our email exchange Dr. Metcalfe noted that MCAS is still considered a controversial diagnosis. (I was aware of his position on MCAS prior to emailing him.) Given that you trained with Dr. Metcalfe I'm wondering if you could share your thoughts/position on the MCAS diagnosis. Many of us here carry a MCAS diagnosis so I'm sure others would be interested as well.

Thank you again for contacting us and letting us know about your practice. As Joan said, we are accustomed to traveling great distances to see MC specialists, so potentially traveling from MD to NC seems almost like a "local" doctor visit!

Best of luck with your practice,

Julie
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Re: Mast Cell Doctor in North Carolina
Reply #4 - 05/12/12 at 12:29:09
 
hi doc   I have colonial mast cell disease by the criteria  i also have mild IgE to bees

i had catoscropic anaphylaxis to a wasp sting no IgE to wasp

my tryptast was 200. My question is if my tryptast goes up slowly with progression of the mast cells

Will the same thing happen around the 200

my tryptast is now 40 has been up to 65
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Lisa
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Re: Mast Cell Doctor in North Carolina
Reply #5 - 05/12/12 at 13:43:36
 
Dear Dr. Lichtenberger, Welcome!!

What an honor that you would like to be a part of us here!!  What a wonderful addition for as you know, this is a very complex disease and the fact that we are all so very different from one another, often we patients find ourselves struggling to help one another.  If our disease and our future well being werent so dependant upon us managing our triggers and keeping our reacting at bay, perhaps it would not be such a struggle for us to help one another, but its not an easy illness to have to manage and every bit of help and advice and support is a BLESSING!!

Im curious, Doctor, how did you find us?  There are other masto sites out there, why us??  

As to questions, serious questions that is, I do have one that I think is important that some of us have hashed over in the past but not come to any concrete conclusions.   I hope you can answer it for me.


Weve been told that managing our triggering is very important.  Those patients who have SM especially are told that this is important.  Knowing that SM is the clonal form, knowing that those MCs dont die off when they should, does the constant triggering add to the MC burden?  Yet, if you can keep the triggering down, does this help for the MC burden not to rise so much??    My reason for asking is because there is such emphasis put upon not triggering and some of us find it impossible not to.  If we were to just ignore or triggering, does that put us into more danger than if we were very careful about it??     I hope you can understand my question for Im not doing that well today due to having had a recent attack and the brain fog is pretty thick.  Sorry!


I hope, Dr. Lichtenberger, that by being here we patients can help you learn better what this disease is and how it behaves and thus increase your knowledge and understanding!!  We BADLY need doctors like you who are willing to listen and learn from us for too many of us find ourselves in the hands of physicians who think they know it all and end up being of little support for us.  You already have gained points in my book just by wanted to be here! Already an incredibly positive sign as to your openness to learn right along with us!!!

All the very best to you, sir!!!


Lisa

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Re: Mast Cell Doctor in North Carolina
Reply #6 - 05/12/12 at 15:39:46
 
Welcome Dr. Lichtenberger! Thank you so much for posting your availability to this community and others that may join and are looking for a doctor near their location that may be able to help them. I checked out your bio and see that you have given lectures at Grand Rounds in topics such as  Mast Cell involvement in Lung Disease. I'm sure many here are curious as to the extent of Mast Cell involvement you may be experienced in and/or willing to explore. As you can see from other posts on our forum there are many varying degrees of experiences with doctors who may know 'some' and other's we consider experts in this topic. Congrats on your fellowship and thank you again for reaching out to our community.
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DrFrankLichtenberg
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Re: Mast Cell Doctor in North Carolina
Reply #7 - 05/16/12 at 02:03:08
 
I saw Mastocytosis patient as a fellow with Todd Wilson, and Idiopathic Anaphylaxis patient with Dr. Melody Carter. I was basically a cell biologist and grew mast cells in culture. My patient population was actually mast cell insufficient, however due to funding issues I was never able to really get my research off the ground. Hence - private practice.
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DrFrankLichtenberg
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Re: Mast Cell Doctor in North Carolina
Reply #8 - 05/16/12 at 02:20:32
 
[quote author=75504A58390 link=1336677173/5#5 date=1336869816]

Dear Dr. Lichtenberger, Welcome!!

Thanks!

Im curious, Doctor, how did you find us?  There are other masto sites out there, why us??  

To be honest, I am not that savy with computers or the internet. I remembered this site when I was trying to recruit patient for my clinical study.

As to questions, serious questions that is, I do have one that I think is important that some of us have hashed over in the past but not come to any concrete conclusions.   I hope you can answer it for me.


Weve been told that managing our triggering is very important.  Those patients who have SM especially are told that this is important.  Knowing that SM is the clonal form, knowing that those MCs dont die off when they should, does the constant triggering add to the MC burden?  Yet, if you can keep the triggering down, does this help for the MC burden not to rise so much??    My reason for asking is because there is such emphasis put upon not triggering and some of us find it impossible not to.  If we were to just ignore or triggering, does that put us into more danger than if we were very careful about it??     I hope you can understand my question for Im not doing that well today due to having had a recent attack and the brain fog is pretty thick.  Sorry!

This is actually an AMAZING question. "Does mast cell activation/degranulation lead to mast cell proliferation?" We really do not know the answer to that. From what we know about D816V mutations is that the cell survival machinery is much different from unaffect mast cells, and they are actually harder to keep alive in culture. When mast cells degranulate they release a lot of different things, other than histamine. They release cell growth factors, alot of which are involved with allergic inflammation.  To answer your question: there is no evidence to state that controlling triggers in mastocytosis will control the rate of cell division. The main goal of trigger control is quality of life, and to prevent the heavy attacks that can be fatal or result in hospitalization.


I hope, Dr. Lichtenberger, that by being here we patients can help you learn better what this disease is and how it behaves and thus increase your knowledge and understanding!!  We BADLY need doctors like you who are willing to listen and learn from us for too many of us find ourselves in the hands of physicians who think they know it all and end up being of little support for us.  You already have gained points in my book just by wanted to be here! Already an incredibly positive sign as to your openness to learn right along with us!!!


I will try to answer what I can, and try to stay up on the mast cell literature.

All the very best to you, sir!!!


Lisa

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DrFrankLichtenberg
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Re: Mast Cell Doctor in North Carolina
Reply #9 - 05/16/12 at 02:26:38
 
hi doc  

I have colonial mast cell disease by the criteria  i also have mild IgE to bees

i had catoscropic anaphylaxis to a wasp sting no IgE to wasp

Are you sure that is was a wasp that stung you? Many hymenoptera look remarkably similar. Even so, with a high mast cell burden such as yourself, the mere touch of venom can be the critical mass of anaphylaxis for you.

my tryptast was 200. My question is if my tryptast goes up slowly with progression of the mast cells

I owuld guess that your tryptase of 200 would be near an acute attack, or sickness, and your baselise level is closer to 40-50. Trytptase is out best marker for the total number of mast cells in the body, normal is between 2-10. Depending on the lab, time of day, how the blood was drawn, can affect levels.




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Re: Mast Cell Doctor in North Carolina
Reply #10 - 05/16/12 at 02:36:38
 
The reason I mention this is that in our email exchange Dr. Metcalfe noted that MCAS is still considered a controversial diagnosis.  (I was aware of his position on MCAS prior to emailing him.)  Given that you trained with Dr. Metcalfe I'm wondering if you could share your thoughts/position on the MCAS diagnosis.  Many of us here carry a MCAS diagnosis so I'm sure others would be interested as well.

Dr. Metcalfe has defined Mast cell and mastocytosis research over the past 30 years. He has forgotten more about mast cells that I'll ever really know. Mast cell activation syndrome is considered a controversial diagnosis because it is new, does not yet have an ICD 9 code, and unknown mechanism. The characterization of it is continuing at this time. The clinical criteria are very broad, with slightly elevtaed tryptase, pressence of drug allergy, IBS like symptoms.

Keep in mind, the less acute a condition, the harder it is to define. MCAS likely takes years to manifest and can mimic quite a few other conditions. There is not a detectable increase in total mast cell number that we can measure in a microscope. The mast cells tend to be more "twitchy" that normal. We aren't sure if people with MCAS have similar predispositions to osteoporosis or GI bleeding like in mastocytosis.

So yes, until these questions are answered, MCAS will be considered controversial by the Allergy/Immunology community. This will not last long though.

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Re: Mast Cell Doctor in North Carolina
Reply #11 - 05/16/12 at 07:20:54
 
Thank you, Doctor, for your wonderful answers!!  Im certain that Im not the only one who gained understanding with your replies.  I especially appreciate your last one showing that hopefully the Allergy/Immunology community will be catching up soon!  Those of us who have MCAS diagnoses look to Dr. Castells as our highest authority for she's been the major promoter of this diagnosis for quite some time.  Some of us have not had an easy time accepting the NIH's stand on not accepting this diagnosis for in their stand, we end up getting rejected either by the NIH itself or by doctors who are not so broadminded.  We've not had an easy time understanding the NIH's stand, but when you explain it the way you did, this helps a lot!  Thank you!!

Thank you also for your reply to my question.  You put it into much better words than I was able to that day!!

Now, do you mind if I pick your brain with another one?  

Doctor, I've got a diagnosis of MCAS, but I'm suspected for MMAS.  I live in Brazil and although I'm American by birth, I'm a missionary and haven't the funding to return to the States for testing, etc.  I must live within my limitations and Brazil's limitations.  So for now, it's a suspicion, a very strong suspicion.  Everything about my case that the neoplasm exists, we've just been unable to find it.    My case is also autoimmune and it has added its own flavor to my case! (to say it mildly!)

My question is - I've been without problems of reacting to smells for the past 4 years since my masto came out of hiding following surgery.  I had no problems with smells at all, however, last year things suddenly changed!  I had a bad reaction to some pretty awful perfume and since then I've triggered to perfume 4 more times and in the past 3 weeks I had a reaction to strong car exhaust and last week to the silicone that the guys at the car wash put on the inside of our car when they cleaned it.  It's not the first time my husband had the car professionally cleaned, but what I don't understand is why, in this past year, am I suddenly sensitive to smells when for the 4 years prior I didn't have a single problem with odors!!

How is it that we can change like that all of a sudden?  I've heard of others go from having very few issues with food to becoming so reactive that they are down to a diet of only rice and chicken or only a few items.   I'm a shocker and even though these situations are frightening, even this kind of thing we humans find we can adapt ourselves to, but it's the unknown nature of this disease which is so hard to adapt to.  This is one reason why I like to study about it for in gaining more understanding, I'm able to deal with my fears and put them into the right perspective.  But how can I defend myself when I can't even figure out what happened to change this and is it going to get worse?

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?

Thank you!


Lisa
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Re: Mast Cell Doctor in North Carolina
Reply #12 - 05/16/12 at 13:05:55
 
Welcome Dr. Licthenberg!

Thank you so much for joining. I commend you for your interest in the patient forum!! I think so much insight can be gained by perusing these resources and you are truly progressive in recognizing this. Thank you for exemplifying the true spirit of Medicine!

Ana
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Re: Mast Cell Doctor in North Carolina
Reply #13 - 05/17/12 at 19:50:44
 
hi frank

evidence indicates that bone marrow does not contain
mature mast cells
do you no How  thay get in to the bone marrow
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Re: Mast Cell Doctor in North Carolina
Reply #14 - 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.
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