Hi I am 44 yo I have been overweight most of life so I suffer from all sorts of aches and pains that I relate to weight and being out of shape. Anyhow recently I have had this weird feeling on left side under ribs almost like a bubling or gurgling of stomach and I can feel it when I breathe at times. Fast forward to December I had "bronchitis" I took a z pack didn't get better my dad was sick in hospital and I had extreme stress with him and the holidays. Just before the new year I felt like I had a UTI, I did and it was resistant to a lot of antibiotics, which is crazy because the z pack was first abx I took in years and I don't get UTI's and I was also told I had pneumonia since my left lung was full of junk and wheezing. I was treated with other abx and prednisone and breathing treatments. Well I felt crappy and jittery with all these meds and didn't really get better so things had to be extended then I did see a pulmonary dr to I seen a urology dr for the UTI I also had CT scan of abdomen and chest nothing alarming the chest showed a little area of inflammation. I then was put on singulair to try to get over the hump. 3 days later I developed this severe facial flusing and hives on neck pain all on left side. I went to the ER my BP was extremely high and my pulse they gave me ativan and sent me home. The pulmonary dr saw me and started my back on abx for 6 weeks (which I stopped taking after almost 5 days) and more prednisone. She did an angio of chest to check for blood clot it was negative and the inflammed area was almost gone from the previous CT. I then had days of this facial flushing so bad my dr saw it tested me for lupus, my ANA was + but the double stranded DNA was -. I then went straight to a cardiologist and had an echo which was ok but my BP was 200s/120s and HR in 160s. That night I developed the same UTI again. I was tested by 24 urine for carcinoid syndrome (-), aldosterone releasing tumor (-), phetocycroma (-), and cushing disease (-). All of my labs are pretty much normal. My BP is still high I am on one med for it and my cardiologist is adding second med today, bp 150s over 90s. pulse is down. I wasnt' sure if i was having anxiety from the singulair so I stopped that this past weekend. I also have been nervous over all this and now think what can be wrong next. I still have palpitations, I did have a 24 hour holter monitor and it was normal. I dont' know how to explain how I feel sometimes ok other times not myself at all. I have had a dull headache almost constantly. I feel like I have a short leash at times, mostly because I don't feel like myself. I had some weird things like burning in nose, mouth, throat during those facial flare ups. They also feel itchy. People have said are you sure you are not having an allergic reaction, my eyes also get puffy and so does my face. The hives on neck are not raised and I do get itchy not extremely bad but a little and I get antsy also. My mouth and such does feel like I want to take benadryl but I haven't. I have not had the red face that bad in about 2-3 days. I feel like things have slowed down for the moment. But in the past months I do feel like i am inflammed inside it is a weird feeling I don't look it but I do feel "swollen". These are just some things I can name. Just curious if I should ask for testing for this because my dr is perplexed and really feels something there but not sure and everything is negative. He even called me on last saturday to test for cushing., because of the BP and flushing and I always had hard time losing weight. But my friend has this and then after researching it I am realizing these symptoms kind of go with this. My urologist said I appear as if I having something immune going on but no one can put finger on it.
I've had too many doctors to count that couldn't make sense of inflammation flare-ups that are there but don't show up on imaging. At least with skin problems, one can point to them and get doctors to at least knowledge the problem. Mast Cell Activation Syndrome is an emerging concept within the past 10 years and most doctors aren't familiar with it. Normal mast cells (part of the immune system) reacting hyperactively, degranulating and releasing massive amounts of histamines and other chemicals into the bloodstream and causing inflammation randomly throughout the body (not just the skin or gut), it is not necessarily auto-immune (antibodies not involved). One clue would be if your symptoms get better (like anxiety and palpitations, believe it or not) when taking Zyrtec and Zantac (H1 and H2 antihistamines).
So sorry Lisa!! It sounds like you are having a very difficult time, and experiencing all the "serious symptoms" yet testing OK for everything. It's interesting you wound up here, in this forum, because the symptoms and behaviors you describe are also present during mast cell degranulation.
One particular comment that stood out: "I was tested by 24 urine for carcinoid syndrome" Carcinoid is one thing they test for and rule out when considering a mast cell activation disorders. Why? Because the signs and symptoms are the same for MCAD.
Obviously, I can't tell you to stop taking your medications. But you can check the ingredients of each one and see if they are know to cause mast cell degranulation. You can also check all the addtives and fillers in your particular Rx (call the pharmacy). Look on a high/low histamine list for these ingredients, too.
Google " PDF Swiss Interest Group Histamine Intolerance (SIGHI) " and save the PDF list to your computer. This is the best list I've found so far.
Antihistamines (called H1 and H2 blockers) are very effective at relieving symptoms. Ask your doctor if it's OK to take these for relief. Most MCAD patients take Zyrtec and Zantac. The combination works together. We have a lot of mast cells in the GI system. That's what the Zantac is for. Generics are fine as long as you tolerate the fillers, etc. Benadryl is amazing. Get only dye free if buying liquid. If you're buying tablets, wash off any colored coating or buy a generic without dyes and colorants added. (I have to get mine compounded at a special pharmacy.)
Many MCAD people react to smells, fragrance, temperature changes, stress, chemicals, foods, friction, sound.... The likst of triggers gets really fun. Try to avoid using lotions and creams, scented laundry detergents, perfumes... Adopt a low histamine diet. This means eating a selection of foods in the freshest state possible - no leftovers unless reheated from frozen. Histamine levels increase as food cooks and ages. No slow cooking. Buy whole foods - nothing in packages. Whole foods don't have ingredients. They are the ingredients.
If you are feeling really horrible after eating, try a chicken and grass-fed butter diet. Pink or kosher salt is allowed, but no other plants or spices. Eat this for a day to two and if you improve, you could be reacting to foods. Add back one food at a time and wait until the next day to see if you have a delayed reaction. Collect foods for your "safe list." Sometimes, we react mildly to many things, and all of them together build up. When we eat one or two, we may not notice it's bad for us, especially when the reactions can be delayed for days.
Since your flushing and early anaphylaxis symptoms (1 and 2 grade) happened after taking the meds, I would be very very suspicious. A few of the ones you are taking are known to trigger reactions in some people. There's a really good website written by a scientist living with mast cell activation disorder called Mast Attack. Find it. Read everything you can. She has articles to give to your doctor with references, diagnosis criteria and tests to order. I have MCAD and see an Immunologist. Getting on H1 and 2s, with a low histamine diet has saved my life.
Now is also a good time to insist on an Epi-Pen. I hope you don't have to use it, but it's good to have that little safety net while you try to figure out what's going on. I wish you the best. I think you're already headed in a good direction.