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General Mast Cell Disorders Discussion >> Mast Cell Disorder Doctors >> Mast Cell Doctor in North Carolina http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1336677173 Message started by DrFrankLichtenberg on 05/10/12 at 08:12:53 |
Title: Mast Cell Doctor in North Carolina Post by DrFrankLichtenberg on 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 |
Title: Re: Mast Cell Doctor in North Carolina Post by Riverwn on 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 :) 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 |
Title: Re: Mast Cell Doctor in North Carolina Post by Joan on 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! |
Title: Re: Mast Cell Doctor in North Carolina Post by Julie M. on 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 |
Title: Re: Mast Cell Doctor in North Carolina Post by peter on 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 |
Title: Re: Mast Cell Doctor in North Carolina Post by Lisa on 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 weren´t 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 it´s not an easy illness to have to manage and every bit of help and advice and support is a BLESSING!! I´m 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. We´ve 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 don´t 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 I´m 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 |
Title: Re: Mast Cell Doctor in North Carolina Post by kimtg68 on 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. |
Title: Re: Mast Cell Doctor in North Carolina Post by DrFrankLichtenberg on 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. |
Title: Re: Mast Cell Doctor in North Carolina Post by DrFrankLichtenberg on 05/16/12 at 02:20:32 [quote author=75504A58390 link=1336677173/5#5 date=1336869816] Dear Dr. Lichtenberger, Welcome!! Thanks! I´m 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. We´ve 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 don´t 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 I´m 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 |
Title: Re: Mast Cell Doctor in North Carolina Post by DrFrankLichtenberg on 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. |
Title: Re: Mast Cell Doctor in North Carolina Post by DrFrankLichtenberg on 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. |
Title: Re: Mast Cell Doctor in North Carolina Post by Lisa on 05/16/12 at 07:20:54 Thank you, Doctor, for your wonderful answers!! I´m certain that I´m 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 |
Title: Re: Mast Cell Doctor in North Carolina Post by Anaphylaxing on 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 |
Title: Re: Mast Cell Doctor in North Carolina Post by peter on 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 |
Title: Re: Mast Cell Doctor in North Carolina Post by DrFrankLichtenberg 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. |
Title: Re: Mast Cell Doctor in North Carolina Post by DrFrankLichtenberg on 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. |
Title: Re: Mast Cell Doctor in North Carolina Post by Lisa on 05/21/12 at 04:53:27 DrFrankLichtenberg wrote on 05/21/12 at 02:47:07:
WOW!!!!!!!!!! WHAT A TERRIFIC ANSWER!!! :D 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 didn´t tell me to use it on a daily basis and I´ve 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!!! :) THANK YOU!! Lisa |
Title: Re: Mast Cell Doctor in North Carolina Post by DeborahW, Founder on 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. |
Title: Re: Mast Cell Doctor in North Carolina Post by Anaphylaxing on 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!! :) |
Title: Re: Mast Cell Doctor in North Carolina Post by Joan 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. |
Title: Re: Mast Cell Doctor in North Carolina Post by iamnotalone on 05/21/12 at 10:49:45 This is interesting. For what it's worth, I'll weigh in with my two "scents" :D: 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 >:( Those too are a thing of the past. Okay I'll shut up now- that was way more than 2 cents. :-[ Good luck !!! lori |
Title: Re: Mast Cell Doctor in North Carolina Post by DrFrankLichtenberg on 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 didn´t tell me to use it on a daily basis and I´ve 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...... |
Title: Re: Mast Cell Doctor in North Carolina Post by DrFrankLichtenberg on 05/31/12 at 04:55:09 Joan wrote on 05/21/12 at 10:22:30:
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. |
Title: Re: Mast Cell Doctor in North Carolina Post by Lisa on 05/31/12 at 15:28:17 DrFrankLichtenberg wrote on 05/31/12 at 04:52:49:
Well, it wouldn't be the first time I end up doing a "first" ::), 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 :o 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! :'( It gets really OLD, really QUICK! Such is life with a rare disease, you do some really weird things at times! Lisa |
Title: Re: Mast Cell Doctor in North Carolina Post by peter on 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 |
Title: Re: Mast Cell Doctor in North Carolina Post by Anaphylaxing on 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!! |
Title: Re: Mast Cell Doctor in North Carolina Post by Lisa on 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 |
Title: Re: Mast Cell Doctor in North Carolina Post by kimtg68 on 06/09/12 at 15:46:47 FYI His contact info is listed in his first post (on the first page). |
Title: Re: Mast Cell Doctor in North Carolina Post by Lisa on 06/10/12 at 04:30:29 All I can do is plead mercy and understanding for this goof! I´m 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 |
Title: Re: Mast Cell Doctor in North Carolina Post by kimtg68 on 06/10/12 at 16:11:26 I figured you were having a masto moment ;) |
Title: Re: Mast Cell Doctor in North Carolina Post by sparklesmom on 08/04/12 at 23:55:32 Wow a Doc who understands this stuff in NC! WOW! I'm heading your way once I'm insured again. :) |
Title: Re: Mast Cell Doctor in North Carolina Post by Lisa on 08/25/12 at 00:52:45 Dr. Lichtenberg, I hope you will reply to this please. Doctor, we have patients on here who haven't many options financially. Sometimes some of us who have been diagnosed will get other patients from behind the scenes asking for us as to how to get into the NIH. I've tried to help several patients for these patients often are at their wits end and have no hope financially of getting help anywhere else. I know the NIH "must follow protocol" and so they are limited in how they can help patients outside of that protocol. However, there is one study which has to do with anaphylaxis and this study seems to be the one which a possible MCAS patient could get a diagnosis especially seeing that Dr Metcalfe is not looking at MCAS patients and only SM patients with a proven diagnosis. Doctor, what do we do? How can we support these patients? I've spoken with Dr. Carter and she is so busy, but very gracious, but not much help. Can you give any suggestions as to how we can help these patients? Is there someone else we could speak with? We've had patients here who go through tons of anaphylaxis and want to go to the NIH but the doors don't open and they are stuck in the doctor grind mainly due to their not finding a doctor who knows what they are looking at. Can you give us some suggestions please? Thank you! Lisa |
Title: Re: Mast Cell Doctor in North Carolina Post by dixiepicsy on 03/23/13 at 16:17:53 DrFrankLichtenberg wrote on 05/21/12 at 02:47:07:
Is that what causes my abdomen to swell and cramp as well as extreme flushing, total body weakness, and pre-syncope when I'm exposed to fragrances, chemical fumes, isopropyl alcohol fumes, food smells (including cinnamon, ginger, coffee, and spices), etc. ... even when I'm wearing a mask? My mast cell doctor says that this is because of the different mediators my mast cells release. BTW... an elevated tryptase is not a required diagnostic criteria for MCAS. |
Title: Re: Mast Cell Doctor in North Carolina Post by Bruce Hart on 04/03/14 at 14:30:37 hi dixiepicsy. Yeah clearly Dr. Lichtenberg has misunderstood Lisa's question. Lisa was asking about the scariest feature of MCAD for me: dynamic triggers. With dynamic triggers the number of triggers are often changing. If we have strong or frequent reactions to triggers it often makes us more sensitive to where we have stronger reactions, and also suddenly begin reacting to many things that were tolerated fine before. So then our "trusty" list of known triggers can quickly become just a small subset of our triggers. Luckily trigger avoidance, especially in conjunction with meds, allow us to become less sensitive, but it's very hard to become less sensitive once you're reacting to everything because it's so hard to avoid triggers long enough for the immune system to calm down. I'll be glad when my living situation improves so I can avoid triggers long enough to not have constant brain fog and mental fatigue so I can read more publications on MCAD. But so far it seems the common aspect of MCAD, diverse triggers, is underpublicized, and I haven't even seen anything about the dynamic triggers feature of MCAD published by MCAD doctors and researchers. And it really annoys me because dynamic diverse triggers, when present, and depending on symptoms, can be an enormous clue to suspect MCAD. I think it should compensate for atypical MCAD-consistent symptoms, for suspecting MCAD. To me, dynamic diverse triggers with unexplained atypical, but MCAD consistent, symptoms is even a bigger clue of suspecting MCAD than typical MCAD symptoms alone. So I think it should help doctors in suspecting MCAD with atypical symptoms, but I get the impression it's really underused as a diagnostic clue. Also doctors need to know this for maintenance of MCAD too. It would be best for patients to learn of this feature of MCAD through their doctor the moment they're diagnosed instead of putting patients at risk of learning it the hard way. So it's baffling and annoying how underpublicized it is. So it's not surprising Dr. Frank Lichtenberger may not have learned of dynamic diverse triggers from the MCAD specialists/researchers at that time, but hopefully he is aware now. |
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