Hi Everyone ,
My name is Charee, I am a housewife in Seattle, WA, with 3 kids and a very understanding husband. In 2002 I was diagnosed bipolar, and shortly after with Lyme disease and fibromyalgia. After a long course of Antibiotics and Glutathione shots for the Lyme I started to improve. Over the next 10 years I have suffered from severe pain in my back and hips, overwhelming fatigue, thyroid goiter, diarrhea that occurs after eating, migraines(had all of my life), brain fog, and various other complaints that would come and go. I went to a few doctors over the years that dealt with fibromyalgia, one place that didn’t take insurance and cost an arm and a leg (couldn’t afford it after a while), and another who was very good but moved last year. He diagnosed me with adrenal insufficiency. For a while he treated me with hydrocortisone and that helped. I thought I just have to live with what I have and treat the symptoms as best I can. So for the last 3 years I have basically been treating the pain with Norco (sparingly) and just laying in bed on the worse days.
If you have ever had something like fibromyalgia you probably know how much you feel like a hypochondriac when you complain to the doctor about your symptoms. Though I have a wonderful doctor I have always been afraid of being labeled a difficult patient or a drug seeker (I worked as a nurse for 5 years, but had to give it up due to my illness, so I know how these types of patients are seen by health care professionals) so I don’t go to the doctor unless I have to. So anyway, June 2011 I started breaking out in hives (interestingly after my son gave me a Salt and Vinegar Chip). I went to my primary care doctor and they gave me some prednisone and H1 and H2 blockers. The hives cleared up, but when I tapered down to 30mg on the Prednisone they would come back. After a month or so of this they sent me to an Allergist. She immediately said I was having autoimmune idiopathic anaphylaxsis. I was given an Epi-pen and put on Allegra, Zyrtec, Zantac, Benedryl and Prednisone. The same thing happened when I would taper down on the Prednisone at 30mg the hives would come back. So I have been on the Prednisone for 6 months.
In October 2011 I had my first “event” and went to the ER. My eyes swelled up and then my lips. (my husband accused me of pouting, and then I happened to look in the mirror saw how bad it was) So I went to the hospital and got the standard Epi, Pepsid, Benedryl and Solumedrol got better and went home on 60mg of Prednisone to taper down. 2 weeks later same thing happened. So my Allergist changed my Zyrtec to Xyzal and the Benedryl to Hydroxizine.  Even on all those meds and Prednisone 30mg every other day I had hives most days for a couple of months.
Then 2 weeks ago I went to my primary care because my back pain became very bad and even the Norco wasn’t helping(yes I know it is contraindicated but it is all I have to help, it does make me itch though). He said why don’t I take some Aleve for the pain, and sent me to Physical Therapy. Like a dummy I thought OK what will an Aleve hurt(even though my Allergist had told me not to take NSAIDS) . So my tongue and throat swelled up and I was in the ER again. Same regimen for the allergic reaction which helped. While I was there they gave me Tordol and Morphine for the back pain, which caused me to swell up and got me admitted to the hospital. So here I am tapering down on Prednisone again.
Saw my Allergist 3 days after the last hospital visit and she diagnosed me with MCAS or D whatever is is and gave me an Rx for Ketotifen. I hate to say this but I am actually happy to have a diagnosis even if it is not something that can be “cured”. Having Fibromyalgia all these years has been terrible and depressing because there was very little I could do but deal with the symptoms. But now I have things to try like meds and diet. I am so happy to have this site to look for ideas to help. So here are my stats:
My Labs are      Serum Tryptase 11 and 12ng/ml
           Mature Tryptase 1.1ng/ml
           ANA Neg
           A few liver enzymes high
           Thyroid Antibodies within normal limits
           CBC ok except high WBC 12.4 and Neutrophils 8742cells/uL
           Sed rate within normal limits
           CT showed Fatty Liver
My meds      Trileptal, Gabitril, Lexapro, Lamictal for Bipolar
           Gabipentin, Baclofen, and Norco for Fibro and Back Pain
Allegra 360mg am, Zantac 150 am and pm, Xyzal 10mg pm, Hydroxizine as needed, and Prednisone tapering down to 30 mg every other day(Since I am bipolar they are very careful with the steroids)
And I have an Rx for Ketotifen that I am getting from Canada.
So after reading everything I can find about Mastocytosis and MCAS, I am determined to do as much as I can to improve my situation. I think many of my symptoms have been mast cell related for quite some time. I have cut my diet down to oatmeat and cheerios with milk and sugar, broccoli, grapes and bread. I don’t seem to react to any of these. I was so surprised that within 2 days I suddenly had energy and my brain more alert than I have been in years. I no longer had diarrhea.
Has anyone had this dramatic of a change from a low histamine diet?
I am also trying to get a phone consult with Dr Castells. Has anyone had a phone consult and was it helpful? I am not against travelling to Boston, but it is along way from Seattle, so I am hoping that a phone consult will get me on the right track in the mean time. I just need to approach my Allergist about it and not offend her, get a referral, and get her to order the tests that are required. That won’t be until the end of the month follow up anyway.
So if you have managed to read the history of my life, thank you.
Please let me know if you have any incite into my situation.
I am so grateful for this site and all the people who care about Mastosians (what my husband calls me and people with Mast Cell Disease). I can’t tell you how much encouragement I get reading everyone’s post and responses. I hope to get to know you all better. Thank you again, and may you have a blessed day.
Charee :0)