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DoozlyGirl

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About DoozlyGirl

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  • Birthday 03/20/1967

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    Wisconsin

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  1. Hi. Congratulations on finding some answers. I haven't been on this site for a long time, but saw your post come through in my email. I have been managing OI for 7 years and MCAS for 4 1/2 years and a few things popped in my head when I read your post. Take notice if you react to the Gatorade, as many with MCAS degranulate/react to the dyes and preservatives. Also many with MCAS can't tolerate beta blockers, and betas are contraindicated in patients who carry epi for anaphylaxis. If betas are absolutely necessary, you may need to carry glucagon to overcome the effects of the betas in th
  2. Hi all, its been a while since I've been here. I did the 23andMe testing several years ago, and have been able to make significant progress in regaining my health due to the things I have learned from my genes and biochemistry. The FDA's issue with 23andMe is that they are providing medical advice in the form of their medical reports and have circumvented the typical approval process for medical devices. 23andMe continues to sell tests and provide the raw data, which many use one of several programs to parse out their genetic data from the raw data and they are now pursuing medical device a
  3. Katrina, i have been diagnosed with MCAS by Dr Afrin. There are over 100 different known mast cell mediators, likely up to 200 (per Dr Afrin), and the various symptoms are likely related (at least in part) to the various mediators that are released during mast cell degranulation. I have very pale skin and flush all the time, have frequent headaches, and have plummeting BP as my primary reactions and a few times a month have vomitting, or big "D". Many MCAS folks consider themselves to be a leaker, shocker or both. This describes how the mediators are released: slowly a bit at a time or ex
  4. Here are several publications that I have found. Hope none of them are duplicates what was already shared in this thread. http://www.nejm.org/doi/full/10.1056/NEJM200002243420803 http://www.ncbi.nlm.nih.gov/pubmed/12438171. http://www.ncbi.nlm.nih.gov/pubmed/11458707 http://www.ncbi.nlm.nih.gov/pubmed/12589229 Lyn
  5. This is absolutely riviting news, Issie! Congratulations, you hard work has paid off in a huge quantifiable way -- proof that nutrition/diet and getting at underlying core issues can move one towards health. Please keep up posted on your progress. Lyn
  6. Welcome Shelley, I was diagnosed with autonomic neuropathy and orthostatic hypotension which we later learned that my immune system (MCAS) was holding my autonomic nervous system hostage during my anaphylactic reactions to everything from meds, foods, CT and MRI contrast, personal care products and home products, and other items. I do see many similarities and believe mast cells could be involved in your reactions, especially delayed food reactions and to CT contrast. You'll want to share these documents with your surgeon and anesthesiologist as they include important information regarding m
  7. Dr Theoharides at Tufts in Boston does not see patients, as he is not licensed to practice medicine in the US, but he is one of the top mast cell researchers. Dr Castells is at Brigham and Women's in Boston. Here is a list of mast cell docs who sit on the TMS medical advisory board. http://www.tmsforacure.org/medical_board.php
  8. tpapik, How horrible! I totally agree with what's already been posted. What in the world gave your doc that impression??? Morphine is often considered the most degranulating medicine out there. Even healthy people have issues/adverse reactions with morphine. Mast cells are readily found lining the GI tract and any other tissues that interface with the environment, such as the skin and lungs. Mast cell neoplasms like leukemia and lymphoma are EXTREMELY rare, like only a couple of hundred cases on the books rare. Most of the folks on several sites I'm on have issues with both, so I ho
  9. Hi Darlene, I am glad to hear your procedure went well and that you did not react. The Nuc Med V/Q study you had done is primarily performed to look for blood clots in the lungs. This study has been around for nearly 3 decades. In recent years, improved imaging capabilites of CT scanners have made the CT scan a viable option looking for blood clots in the lungs. Since CT scanners are manned 24/7, it is often more conventient and less expensive on call payroll to just have the patient have a CT scan than to call in the Nuc Med Tech. Patients with a history of reactions to CT contrast, may
  10. bebe, You really don't want to go through your insurance company to get your medical records. :] In the US, release of medical records requires a signature (HIPAA) if the records are to leave the healthcare system. You can request a medical release form while at the doctor's office, fill it out and put on that date and when the records and blood or testing comes back, they will send you the records or you can pick them up and you will most likely require to show an ID. Or you can fax back the signed form later. Some healthcare systems may even have the form on a website or can fax it to yo
  11. Once I got past my hangups about having the placard in the first place, I began calling it my "trump card" and use it when I need to, and keep it in my visor on days I feel good. i don't even think twice about it anymore, and have been glad I've had it dozens of times! Lyn
  12. Darlene, As you likely know already, CT contrast is a common mast cell degranulator, so the mast cell docs recommend premedication. In case you ever need a CT in the future, you may want to send a PM to Ana, she also has MCAS and had a MAJOR anaphylactic reaction to CT contrast. I know she has done tons of reseach on contrast and MCAS. So you ended up with a Nuc Med V/Q Lung scan? How did it go? Lyn
  13. Kris, Did he share WHY he thinks your issue is a localized problem and not a systemic one? Maybe it's both. His description of hypersensitivity thermogregulatory issues provoked by hot or cold sounds a lot like Cold and/or Hot Urticaria to me. And this is a mast cell disorder, which many have been diagnosed with before the term MCAS was even coined. Was the room hot or cold when you kept flushing during you appointment? And what happens if this guy is wrong? Does he have expertise in EDS or mast cell activtion syndrome? Because it is hard to connect the dots until you are in the weeds t
  14. Rama, I agree that the XMRV fiasco must be avoided in the future. What a terrible blow to anyone in the chronic illness world. While the work of Rick Van K has been remarkable and his presence is missed greatly in the CFS world, he is not the originator of the methylation concept in chronic illness. Rich got interested in CFS to help out a friend and used his research skills and experience at Lawrence Livermore National Laboratories to help his friend find relief from debilitating symptoms of CFS. From what I've read on Phoenix Rising, he learned of Dr Paul Cheneys thoughts on glutathione
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