Thanks girls for the encouragement! To answer some of your questions...Deborah I would love to have your docs info!!! I live on the West side of Indy but went up to the Carmel area just a few weeks ago to see a dermotologist. Thank you! Thank you! I really do like my doctor but he is extrememly over worked and hard to get to see, then when I am there he has to leave the office 2 or 3 times. He has dubbed me his most difficult patient. I'm the one that encourage him to give me the script for ketotifen...he said he had only prescribed it one other time but he would see if it would work for me. So he is willing it is just aggrivating cause I am not a doctor and I do not play one on TV!
A coulple of months back I decided it was time to see a new doctor. I was so excited this doctor was supposed to be so good, and I was able to see him within a week. I had high expectations! In my mind he was going to see all the data and look at it from a different angle and I would leave knowing everything was fine. What really happend: I was rejected as a patient...I didn't even know doctors did that! He said he knew my allergist and he did all the tests that he would have asked for and that we would have to re-invent the wheel....I had all the results in front of me...I think he just did not have a dx and didn't want to mess with me. I cried all the way home, and it was a long drive!
My doc has ran urine N metylhistamine or Prostaglandin D2, we are waiting on the 2nd tritaise. I think the 1st one was slightly elevated. He has ran lots of tests, I have even had my vocal cords looked at. (fun side note: when they looked at my vocal cords we did a baseline then I ate a small trigger food and you could actually see where my throat started to swell and then I started holding my vocal cords the wrong way. So I went back and had had speech therapy on how to breathe when my throat is starting to swell.) I have not had a bone marrow test done, not sure I care to...I guess the bottom line is... I don't care what they call this I just want to be better!
My triggers are very high, high and sometimes moderate salycilates. Water?? I was actually reacting to water. We have an osmosis system. So I tried every kind of bottled water. Someone on the salycilates forum recomended distilled and that has worked for me. I drink distilled with no minerals added.
Mold. I can walk in a building and tell you if it has or ever has had a mold problem. (Great talent right?) I could not be in my house at all for a few months in the summer. Long story slightly shortened...we lived in motels for 3 weeks, my daughter and I camped in the car for a couple of days, then I went a bought a tent and slept in it a week...begged my husband to go back to the motel, so we did, then I got on Am Track with my little medical masks and went to my parents house in AZ. Stayed there a couple of weeks. (That is were I was able to figure out the salicylates) Came home only to find I was still reacting to the house...so we did what anyone would do that is out of money....we insulated and put new flooring in the mini-barn and I live in it almost a month. My sweet husband stayed out there with me. A few days before I left for AZ I was bound and determined to find what was setting me off.
All of a sudden there was water running out of a wall, so I thought it has to be mold!! We had contractors, plumbers, roofers, mold inspectors , and mold remediators out. They could not tell where the water was coming from and could not find any extordinary mold source. We were all clueless but I was sick, angry, tired of living in a tent and maybe slighty bonkers!
I started ripping down walls, wearing my N-95 ofcourse. No one else was going to figure it out so I did. We did not find were the water was coming from BUT we did find mold! The duct work had come apart, the insulation was covered with mold, every time the air condition, or furnace came on those sporse were thrown everywhere! After the furnace guy fixed the duct work, we turned on the air and the leak started again, the airconditioner drain was clogged...had nothing to do with the mold but led us to it. We have wiped everything down in our house with a bleach water mix. ( I was tested for every mold an I am not allergic to any.)
I do have some pets left we gave some away, we have a couple of dogs and cats. I'm really hoping they are not the problem, there is no real way to test except to rid of them...that would break my heart...they are usually what keeps me smiling! Although I do not touch the cats and try not to touch the dogs often. When it gets warm out I was thinking of locking the dogs outside and locking the cats up in the garage for a week or so and seeing if that helps. In the back of my mind I can't help but think there is mold spores still stuck in the house.
I do well in my bedroom with my super giant aircleaner!
Sorry to ramble- but honestly you guys are the experts...so maybe you know something I dont.
One of you asked if I had spots, no, I have red blotchy flushing on my chest and neck, they tested a blotch and they said it was neg. for Masto.
Also he has tested me for the carcenoid and other uncommon things.
I do have a high ANA, I have for about 15 years, I was put on plaquinel last fall because I was so tired and sore. My sed rate was normal so she said it was not Lupus, but mixed connective tissue diesease. This is when I had my first visit to the ER. Had a freaky rash that started on my leg and went up to the trunk of my body...my throat started getting tight. They gave me the benydryl and epi and I was fine for about 30 mins. and it started again so they did another round and started me on prednizone for the rash. As soon as I ran out of prednizone the rash reappered. So I was on prednisone for awhile. The rash never came back but I started having aniphalatic reactions.
Also I found out that I am suddenly allergic to:
Cobalt
nickel and nickel in foods (these just make me itch)
a chemical in black hair dye and sulfa drugs
marcepto mix (used in making latex)
fragrance
niamyacin antibiotic
epoxy mix
These were discovered doing a skin test.
okay for my meds.
Singulair
zyrteck (am, pm)
zantack(am, noon, pm)
benedryl and or atarax as needed and at bedtime
vitamin D - my vit D is very low
Effexor
nystatin 2 times a day started this about month ago and I think might be helping not sure though.
I also take an epson's salt bath daily for 20min. for the salycilate issue-this does seem to help, sounds crazy but learned it on the salycilate forum! (magnesum cleans out some pathway)
Thanks for listening and for any advice...like I said you are the experts!
Pam