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About Maiysa

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  • Birthday 02/01/1964

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  1. I hope this wasn't already posted. It's about 2 pages or so long. http://www.mendeley.com/research/mast-cell-activation-syndrome-proposed-diagnostic-criteria/#page-1
  2. I just read the same thing in a medical journal Issie about asprin causing degranulation of PGD2 making asthma worse. Not sure what it means in the scheme of things. Maiysa
  3. Christy, I hope the asprin helps. Let us know how it works. I just read that the test I did, beta PGF2 is a metabolite of PGD2. I guess they are both helpful in diagnosing a few things, and mast cell is one of them. Thank you, Maiysa
  4. Thank you for you post Christy, But sorry to hear about your son having these issues. Poor guy and poor mom. Not easy to deal with I know. But so glad you are able to see Dr. Afrin. That's really great to hear. He sounds amazing. I am pretty sure the test they did on me was the PGF2.?? Prostaglandin F2. I think that's it, I'm going to have to look again. But I can't take asprin anyhow. It really did a number on my autonomic system. Just a tiny baby asprin really messed me up. I'm not sure why the doctor didn't test the PGD2. I went to an immunologist who has worked with Dr. Akin,
  5. Lemons, I watched the documentary CRAZY SEXY CANCER a while back and learned about juicing. One does not have to have cancer to be interested in this movie. It's a great documentary. Kris Carr is amazing. I think everyone on here can relate as she goes through her journey of not knowing what's wrong and being sick and trying to help herself. But it has a happy ending. Anyhow, I also bought her book Crazy Sexy Diet-not a diet but a way of life. She has some great juicing advice in there and lots of other wonderful health tips. It's a beautiful picture book too. I can't do the juicing to
  6. Whoops...spelled prostaglandin wrong. I'm not sure if anyone gets this test, I had never had it before. Mine was the 24 hour urine prostaglandin f2 and the high for the reference range was 1,000. Mine was 1240. Has anyone had this or knows what it means? The nurse called today and just said to take more histamines and they will recheck it in 2 months. I'm already on histamines. So am confused, but will continue to do so anyhow. I was not given a diagnosis or told what it means. I also had an elevated compliment test CH50. Doc said I have a lot of inflammation. Anyhow, just seeing if
  7. Oh my, the lazy thing. So sorry, most people just don't get it, since it's an invisible disease. And to top it off, so hard to reason with a drunk too. Hang in there. Do what you have to do to get through this chapter in your life. Can you ask someone to drive you to your appointment? I know it's hard to ask, but worth a try. Will say a prayer for you to give you strength. Maiysa
  8. I started fainting at age 9 after a difficult stomach infection that kept me in the hospital for a few weeks or less. I was misdiagnosed with petite epilepsy. I started having what they called hypostolic shock, in my 20's. Basically my blood pressure dropped too low, causing my body to go into shock. But it only happened every few years with an occasional grand mal seizure; fortunately it never stopped me from doing anything. But developed a hyper form of POTS in late 2006 after a fungal infection in my lung, which later turned into autonomic neuropathy and now some mast cell issues. Just
  9. Hi Littleangel, Welcome to the group, wish it was under different circumstances. So sorry to hear of all of that you are going through. It's not an easy road. I think we can all relate to the friends disappearing one by one with these issues. It is a hurtful thing to go through. Also, sorry about your boyfriend. That is terrible to hear. I am sending you a cyber hug and lots of healing prayers. Maiysa
  10. Oh, the ACE test. I remember that one. They kept doing the ACE test over and over with me because of lung nodules that ended up being a lung infection and I was also covered in nodules/erythema nodosum for months. I was actually diagnosed with Sarcoid for a while until Mayo figured it out the lung infection was from a fungal spore. I hope and pray that you have some type of answer soon. Please update me or us when you do find out. Hang in there. And so sorry to hear of your issues. Maiysa
  11. Hi Hoosierfan, I think I've mentioned this before on here, but magnesium sent me to the ER. I took just one tiny half dose and it threw the dysautonomia into a frenzy and my blood pressure was all over the place. It was awful. So no more magnesium for me...but my muscles didn't hurt. haha. So it wasn't for nothing at least. Wish I could take it.
  12. Wow, Lemons, that sounds awful. I actually went into convulsions and passed out with the contrast and they shot me with an epi pen. Most people with this can't handle the contrast. Yikes. I wouldn't try that again. They told me I went into anaphylactic shock and also told me to take some benadryl when I got home and I felt fine, a little dizzy for a few days but fine. But everyone is different so don't take those meds if you can't. May I ask why they tested you for sarcoid? I was also tested a few years ago, but got a CT scan without the dye and a blood test. I had lung nodules and no
  13. Sorry, also Libby. I've been there and this was a hurtful thing to have to go through. It's very hard when one doesn't get their mother's understanding with these issues. It's extremely hurtful. Sending you a cyber hug.
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