tag:blogger.com,1999:blog-3983970674487438009.post6808103633151582187..comments2023-10-15T08:35:34.255-07:00Comments on Living with Mastocytosis: on deathBridgethttp://www.blogger.com/profile/16721032881251569586noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-3983970674487438009.post-60898287445216384782020-10-04T07:58:55.384-07:002020-10-04T07:58:55.384-07:00My husband was diagnosed with systemic mastocytosi...My husband was diagnosed with systemic mastocytosis last year and did go to the NIH and see Dr. Robyn twice. He had already had the bone marrow biopsy and aspiration, as well as the tryptase level test. Basically, they did some blood work there and took extensive medical history from my husband. They told us to go home and our local physician could follow up with him as well as anyone could since there are really no specialist doctors to see locally. They said if there were changes to follow up in about a year. He did go back about a month ago and found out that Dr. Robyn was going to leave. We made a research on local herbal medicine and we found out there is a cure with natural herbs and roots medicine.Of Dr James the great herbal doctor from west Africa, on how he uses his herbal medicine to cure several diseases like SHINGLES,WARTS, HERPES,CANCER,HEPATITIS,DIABETES HIV/AIDS,AND MASTOCYTOSIS,and we proceeded and contacted him on his email Drjamesherbalmix@gmail.com..and he said he will help us. 2 days later you told us the herbal medicine is ready and he sent it to us.After 3 weeks of the usage as he prescribed to us.believe me my husband was truly cured of Mastocytosis.You can reach the Herbal Doctor on Drjamesherbalmix@gmail.com or you get in touch with me on Ntrishanelson@gmail.comTRISHA NELSONhttps://www.blogger.com/profile/10838255594427419307noreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-65935728528421974202018-06-03T21:29:33.341-07:002018-06-03T21:29:33.341-07:00I wish there was more information. What I can find...I wish there was more information. What I can find is vague or complicated. No helpful support groups either. Epi-pens aren't affordable or available to people without the means. It's frustrating & scary. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-18916852590856888912018-04-27T21:40:07.110-07:002018-04-27T21:40:07.110-07:00Thank you.
Thank you. <br /><br />onlymehttps://www.blogger.com/profile/02808159200918919209noreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-45956611216913521582017-04-22T16:48:52.103-07:002017-04-22T16:48:52.103-07:00Did you ever find out if tattoos are safe? I'd...Did you ever find out if tattoos are safe? I'd imagine it'd at least have to be organic specific ink..the heavy metals are what worry me. I'm suffering from this and worried about tattoos as well. Sorry for everyone's sufferings. Nicolehttps://www.blogger.com/profile/16156569076547292988noreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-67288197117572247652016-08-09T17:15:20.776-07:002016-08-09T17:15:20.776-07:00My mother died at 47 from vascular shock from Mast...My mother died at 47 from vascular shock from Mastocytosis. It happens. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-16184150283229329132015-06-24T20:24:59.019-07:002015-06-24T20:24:59.019-07:00In 2002 my husband was told he had mastocytosis an... In 2002 my husband was told he had mastocytosis and their had only been 64 cases that have ever been diagnosed in the world that doctors know of. A lot of them being children and they grow out of it. His family and I were told that he only had 6 week's or less to live. I refused to accept that information.. He was put on a lot of anti histamines and pregnazone and pain med's for 8years and thank the good Lord above for us getting in contact with one of the best cancer Doctors ever Doc.Bharany. He never gave up and my husband is on Gleevec and is doing fine. It is the results of being on all of the steroids that has broken down his body.<br /> I know each case is different but i'm very glad to see that people have an outlet to express what they are going through . Life might seem to be giving you lemons, so just make lemonade. You can contact him at this address www.drudogg03@gmail.com.....<br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br />Newmannoreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-27766811291181124562014-06-27T12:00:32.634-07:002014-06-27T12:00:32.634-07:00mastocytosis is scary let's admit that. Any o...mastocytosis is scary let's admit that. Any of us who have it feel somewhat that way. But all of us as human beings have some kind of a disease. Some have active symptoms, some non-active. If you have cells of any kind they are carring some sort of disease. Living "things" are walking bacteria,viruses and genetic markers. At some point and time they over take us and we go onto the next journey. In this journey, look at the cons and replace them with pros when possible, epi-pens yes, but knowledge is the key. Histamine, know about histamine and what triggers it most often. Eat a low histamine diet, did you know that there is such a thing? Know what are the common activators of histamine are. If you are reading this then hopefully you have a computer available to you to look up "Histamine." Chin-up we who have Mastocytosis of any kind can educate others and can be walking examples of a positive life. My best to all of you. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-64122200863314552752014-06-27T11:51:26.880-07:002014-06-27T11:51:26.880-07:00sadsadAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-18955132494169389322013-08-31T08:46:15.693-07:002013-08-31T08:46:15.693-07:00In 2009 my husband went into anaphylactic shock fr... In 2009 my husband went into anaphylactic shock from bee stings and had never been allergic before. He went into cardiac arrest and was out for 7 minutes before they got him back.<br />In 2012 he started bee venom shots at his allergists suggestion. He had evelvated tryptase levels and the doctor suggested a bone marrow test to check for this disease. My husband denied the test.<br />July 2013... my husband went into anaphylatic shock again with cardiac arrest. His eppi had no effect and it took 20 minutes for doctors to get him stable. He was brain dead for 9 days before he passed away. He was 38. A father. He had no signs of bee stings or insect bites.<br />I believe he had this disease. And if he hadn't denied the bone marrow test.....we may have known.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-9584408514408562932012-01-10T00:10:45.508-08:002012-01-10T00:10:45.508-08:00I have no idea if you are still using this blog bu...I have no idea if you are still using this blog but I would love to ask- where is your research as to there being a good chance of dying from this as you said?<br />I understand what you have said about not worrying about it but the general tone of the article seemed to indicate there is a real chance of this and as you said "epi pens" buy more time.<br />If you have the info I would like to know how one dies from this. For me while I have gone into anaphylaxis and number of times complete with passing out I am not aware of the episodes having an effect on my body that could lead to death. Anaphylaxis itself of course can kill you but it is quite rare from what I understand. <br />Any more information would be greatly appreciated.<br />Thank you!!monchichihttps://www.blogger.com/profile/01382245855776745093noreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-59850296893231494142009-08-27T11:14:50.012-07:002009-08-27T11:14:50.012-07:00Well said!Well said!Faithhttps://www.blogger.com/profile/15614957127548059830noreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-42201028502453251462009-08-26T17:06:33.974-07:002009-08-26T17:06:33.974-07:00Awesome post.Awesome post.Gypsy Princessahttps://www.blogger.com/profile/10895474823958002955noreply@blogger.com