tag:blogger.com,1999:blog-5851425412708638764.post7136913891080527879..comments2023-08-11T04:37:16.576-07:00Comments on Surviving with Systemic Mastocytosis: Live Well..Love Much..Laugh Often: Just a small update!!!Kevinhttp://www.blogger.com/profile/17197927892390298693noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-5851425412708638764.post-74595245418307354102013-08-13T04:43:16.813-07:002013-08-13T04:43:16.813-07:00Hi Keven, may I ask what were your first symptoms...Hi Keven, may I ask what were your first symptoms at 30 years old?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-49890202025433827592011-07-01T19:03:07.797-07:002011-07-01T19:03:07.797-07:00Hi Brandi,
I hope Mick gets some relief at the Cl...Hi Brandi,<br /><br />I hope Mick gets some relief at the Cleveland Clinic on Tuesday. If not, please let us know. Watch carefully that he does not pass out and inhale vomit. That can kill him.<br /><br />Is there someplace where those who want can go for a discussion? I'd like to talk and answer each others questions. <br /><br />I'm on Facebook, but I don't know how to find others living with mastocytosis there.Adriennehttp://www.pushinglimits.i941.net/noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-5706763931185978242011-06-13T09:53:08.083-07:002011-06-13T09:53:08.083-07:00God bless you and all who are affected by this ter...God bless you and all who are affected by this terrible disorder.<br />I do online research regarding nutritional issues, and noticed that "malabsorption" was mentioned in a short article explaining mastocytosis. While I don't necessarily think that nutritional deficiencies cause the problem, if the disorder causes malabsorption (gut cannot absorb nutrients > leaky gut syndrome > inflammation > auto-immune disorders) whatever causes leaky gut (gluten problems and/or other food allergies) could contribute to the mast cell problem and also worsen the malabsorption, which then reinforce each other, ad infinitum. Consider also the state of nutrition in the US and the world; boxed foods made with grains stripped of all nutrients; the human metabolism requires X nutrients in Y amounts everyday at each meal in order to keep each of us alive and well. We are biochemical machines, but our biochemistry does not function without its require fuels; minerals moderated and catalyzed by vitamins, enzymes, amino acids, all made from foods by our bodies. Without nutrients, our biochemistry cannot function.<br /><br />Without knowledge of nutrient deficiencies, the deficiencies cannot be solved. Please consider finding the type of doctor who can order the type of blood test that reveals what vitamins and mineral supplementation might be required in order to enable the body to repair its tissues and for its biochemical reactions to proceed. <br />I'm not just whistling in the cark, but am recovering from insulin resistance -- not dangerous in the emergency way of mastocytosis, but getting competent help regarding nutritional deficiencies gave me health for the first time in my life. Knowledge is power; empower yourselves -- it can't hurt and it might help. http://www.doctoryourself.com/<br />http://www.orthomolecular.org/Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-80046474079803655232011-05-23T10:01:42.161-07:002011-05-23T10:01:42.161-07:00That is very good news that the body and mind is c...That is very good news that the body and mind is coping well to the medication and responding well.It is a hard journey...god that everything is working out the right way for you.Medical Billing Softwarehttp://www.healthtec-software.com/Medical-Billing-Software.htmnoreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-15175569510769066182011-05-18T15:41:29.208-07:002011-05-18T15:41:29.208-07:00My name is Brandi, my husband, Mick, 44 years old,...My name is Brandi, my husband, Mick, 44 years old, was diagnosed with Mastocytosis on Monday, 5/16/11. We are obviously in the very preliminary stages & don't know a whole lot yet. Kevin, I really appreciate this blog & your story being posted! We have received the tryptase results, being 22. We live just south of Kansas City & unfortunately there are not any doctors in our area that know much about this condition. We have scheduled appointments with the Cleveland Clinc for June 6th & the Mayo Clinic in Rochester June 30th. He is in a tremendous amount of discomfort & would greatly appreciate any advice on what we can do from home to ease his discomfort, if anything. He is currently taking over the counter benadryl, which sometimes seems to help, but not all the time. Last night & this morning he had pretty severe attacks, involving coughing, air in the abdominal cavity, vomiting, and tightness in the chest & neck, both attacks have lasted 30+ minutes. We are very anxious to get to a doctor that can help, but hate that it's not any sooner than it is. It is nice finally getting to the bottom of this whole deal! We have been trying to figure this out for a couple of months now, & everything is finally starting to make sense. For years, he has jokingly said that he is allergic to alcohol, because everytime he drinks a beer, just one, his face would turn red & he would get these red blotchy spots, which would go away after a few minutes. Now we have learned that alochol can be a trigger, along with spicy food, which he loves... Any advice or recommendations would be greatly appreciated! Thanks again to Kevin & all his followers for keeping this blog alive! Take care! Sincerely, BrandiMichaelhttps://www.blogger.com/profile/01218979961132837879noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-59110957481846695392011-05-11T16:22:06.868-07:002011-05-11T16:22:06.868-07:00I too have SM, diagnosed in 2009. I'm blessed...I too have SM, diagnosed in 2009. I'm blessed in that I haven't had the reactions I have read with regard to SM. I saw a specialist last month and he put my anxiety to rest, at least for right now. haha I experienced anaphylaxsis in Dec 2010 (most likely due to antibiotic) so I feel your pain!! I'm still learning, carrying my epi pens and glad to find your posts as well so I'm not alone. I pray we find a cure and that you have a great year of good health!! Take care!Laughing Mommyhttps://www.blogger.com/profile/10607977707707525171noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-88919567061932105392011-04-30T23:00:15.759-07:002011-04-30T23:00:15.759-07:00Hello Kevin,
I have been living with systemic mast...Hello Kevin,<br />I have been living with systemic mastocytosis since 2006. I had a "shock" episode and my doctor thought I had a carcinoid tumor but latter tested for SM and confirmed it with a bone marrow biopsy. I live in a small town and was fortunate to be going to the only Dr. in town that knows what Mastocytosis is.<br />I read your blog for the first time today. In one of your posts you mentioned eating pizza and waking with an attack. I cannot eat anything made with tomato sauce or paste. Fresh tomato I can eat but when it is condensed it's a trigger everytime.<br />I'm glad I found your post and will be back.<br />BarbaraBarbara Beamnoreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-44458942385634858802011-04-30T17:55:11.732-07:002011-04-30T17:55:11.732-07:00I love the picture of you and your wife! I check i...I love the picture of you and your wife! I check in on you once in a while. I am glad you are feeling better. Keep keeping on!Anonymoushttps://www.blogger.com/profile/06124347462459403727noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-20419526325725570452011-04-26T07:59:06.877-07:002011-04-26T07:59:06.877-07:00Hi,
I live in Leeds, England & was diagnosed ...Hi,<br /><br />I live in Leeds, England & was diagnosed with SM a few years ago, although i've suffered with this for 13 years. I feel EXACTLY as you describe, Kevin & Mark. It is a scary experience & doesn't get any easier. I'm trying dasatinib at the moment, but still had a bad attack last week. I was at work & they had to call an ambulance. It is sooooo annoying.<br /><br />I do try to be positive though & have a great family who support me.<br />take care everyoneJanethttps://www.blogger.com/profile/00507089583620017692noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-49370241585129139192011-04-17T14:00:59.375-07:002011-04-17T14:00:59.375-07:00I'd never heard of Systemic Mastocytosis until...I'd never heard of Systemic Mastocytosis until a couple of weeks ago, and I just now found your blog. Last Thursday I was diagnosed with Systemic Mastocytosis. Currently I feel fine, but know I have much to learn and try to understand, both for myself and my husband, and also so that I can tell our grown daughters about my diagnosis. I've bookmarked your site and will return. Thank you and may God bless You, Kevin!Unknownhttps://www.blogger.com/profile/09675465791594084300noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-46689055935841690692011-04-11T10:14:36.609-07:002011-04-11T10:14:36.609-07:00Hello there,
My boyfriend from New Jersey has been...Hello there,<br />My boyfriend from New Jersey has been told this is what he has. He had a bone marrow biopsy and received the results that he has 10% mass cells. He is 21. <br />I have been reading your blog as a way to prepare myself. I did direct him too read it as well, but he feels that he doesn't want to read about things that will happen too him, if they are not currently happening. <br /><br />I wish you all the best and will be continuing following you.Danninoreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-42556582383171494872011-04-04T20:11:50.543-07:002011-04-04T20:11:50.543-07:00My sister has this. I'm doing research and ha...My sister has this. I'm doing research and have bookmarked your blog. I plan on coming back as I want to read your entire blog.Unknownhttps://www.blogger.com/profile/10713663446220159159noreply@blogger.com