Maiysa

You are welcome Corina! Hope you are feeling well.

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

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

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

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, who I believe deals with mastocytosis. But I could be wrong. Did your son also have elevated tryptase levels? I'm waiting on the b-tryptase which takes 35 days to complete. I already did the regular tryptase and it was elevated. Thanks again and I hope you have a healthy evening, Maiysa

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 the extreme that she does, but I add the alpha lipoic acid to mine and I think it really has been helping my nervous system. I do both juice and blender. I bought a used vitamix on line and also put a bid in on a juicer on ebay and got a very nice one. I love the flavor of the juicing better, but I also need the fiber with the blender, so I go back and forth. The juicer is a bit of a clean up, but worth it. I have my favorite concoction of kale, carrots, ginger, an apple or pear, (1/3 of a banana if you blend) and a dash of cinnamon. IT's so DELICIOUS. I crave it every day. It helps with inflammation and to keep me regular. I can't take the gastro paresis meds, and this is my healing drink. Of course it's not the cure, as some days are still not fun, but it has been a HUGE help. I also found out the hard way that one can't start out too fast with this stuff. Someone gave me good advice, to make a nice glass of it and sip it throughout the day. I don't know why, but my stomach just couldn't handle it alone, unless it's late in the day and my blood sugar is level. I also add my alpha lipoic acid and vitamin E and it's a wonderful supplement for me. Also, I buy the $1 jelly jars at any hardware store or walmart, and I keep my juice in there for up to 48 hours, that way it's nice and air tight. The Jelly Jars are wonderful and look pretty and green in the fridge. And I just pop them in the dishwasher after. Happy Juicing!! Maiysa

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 anyone else has had this test come back abnormal. Thanks! Maiysa

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

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 found out I have hypermobility joint syndrome also. But POTS has subsided, but still have orthostatic intolerance. I'm a member of a native american tribe in the midwest and this is my dominant gene and along with French, 1/4 Swede and lil Irish, Scottish and tiny bit of Jewish. I'm basically a mutt with olive skin tone. I have researched and can't find any genetic correlation so far with any particular race with these disorders.

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

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

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.

Sending a prayer for Kayla and her family.

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 nodules all over my body. Where you having lung issues? Hope you feel well soon. Maiysa

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.