Please help with symptoms!!!

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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.  

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13 Replies

  • Posted

    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).

  • Posted

    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.

    • Posted

      Yes they said I appeared as carcinoid, sudden facial flushing and sudden high heart rate and blood pressure.  I am taking nexium because of the lung issue they wanted to be sure that I was having reflux at night.  I used to take that up until fall all the time for reflux but my dr. said lets see if you can go without.  The only meds I am taking is vitamin D, Iron (for anemia), and nexium, multi vitamin, a probiotic (Align), metroprolol (for the High BP), and he is starting me on losartin for the bp today since it is still 150s over 90s but when I had this episode last week I was 220s over 110s and even higher, heart rate high, I had tremors bad, felt shaky, felt like i was crawling out of skin, i had cool sensations throughtout body, my facial flushing got worse after a shower, and I even took cool ones, I stayed away from creams but my face was so dry even under my nose, i had nose burning itchy throat, also tongue, hands feet, and even lips felt tingly.  I can go on with the symptoms.  today i seem to be having a better day i sometimes cant even explain how i feel inside except it wasnt me and i did not feel right at all.  a good friend has this so i talked to her and that is how i ended up here.  my kids both have epi pens so I have one with me all the time.  I am going to discuss having the blood test with my dr. as a start
    • Posted

      I also had zero appetite at all while i was like this last week.  i mean i could barely eat a yogurt and that isnt me.  This episode lasted about 5 days them the weekend it was present but seemed to be on the way out today is the first day I feel partly normal, but my stomach has been for months a mess it gurgles, growls, etc and i just ate
    • Posted

      "I had this episode last week I was 220s over 110s and even higher, heart rate high, I had tremors bad, felt shaky, felt like i was crawling out of skin, i had cool sensations throughtout body, my facial flushing got worse after a shower, and I even took cool ones."

      Yep. I have all of that during reactions. Hot showers raise histamine levels. I had to take lukewarm showers for a while.

      Google for Michelle's article "What Does Mast Cell Degranulation Feel Like?" and see if any of that sounds familiar. You can also search for "degranulation station" a made-up phrase we use.

      About the Rx's you're taking - most of those drugs treat things that are also MCAD reaction symptoms. If I were in your position (and given your family history of needing epi), I would test immediately for 24 hour urine methyl-histamine, prostaglandin D2 and serum tryptase. Check for Darier's sign yourself (Google it).

      I would immediately switch to a low histamine diet (preferably an elimination protocol of chicken, butter, salt, rice if you're into it but I don't eat sugar) for a few days.

      There's isn't necessarily an issue with your Rx's, but the fillers and additives, preservatives and dyes are MAJOR mast cell degranulators. For example, I had a severe reaction to penicillin as a child. My whole life, I wrote "penicillin allergy" on every doctor's chart. 6 months ago, allergy testing revealed I'm not allergic at all. I had a mast cell reaction to the fillers in the pills they gave me. Most antibiotics in cause degranulation. Join a Facebook group (I'm in several) for mast cell people and ask them where to find the docs about Rx safe lists.

      Visit the Canada mastocytosis website. They have safe versions of Rx's for us to take.

      Google: Mastocytosis Society Canada: Treatments

      The list of all safe meds are there.

      The full body hives, blood pressure, flushing, hot flashes, tingling, numb spots and resting heart rate of 127 I got after taking Wellbutrin was due to the fillers. I felt fine on it for 3 weeks before all hell broke loose.

      Reactions are delayed. We have to control our environment and only change 1 thing at a time to know what's causing the reaction.

      My stomach used to make all kinds of racket. There's also a "pulse" you can feel sometimes. We get "early satiety" where after one or two bites, we are stuffed.

      If you do have MCAD, there are ways to treat it. I know the things I've suggested sound "ordinary" but they'll have a profound effect in a short period of time if that's your issue. I know you want answers. Get those tests run, check out the articles I recommended. That's where you'll find your answers.

    • Posted

      Thank you so so much for all of your information!  I really appreciate it, I have googled and read everything you suggested.  It just sounds so much like what I went throught last week, completely.  Even as I read, I complained of freezing so bad I was shaking, hands and feet were ice but face was red and fire and then I go to bed and have sweats.  I even said I feel like I can't control my temperature, like my regulator is broken all of a sudden.  My mother in law in car had some flower perfume on and it was awful made me sicker than a dog, my face got beat red again and I had the worst headache ever, I had to drive home with the window down.  I also had anxiety which I have never ever had and it literally came out of nowhere, all my friends were like OMG what is going on with her we have never seen her like this.  Then I would have moments of completely feeling down and that is not me either.  I am going to have testing.  My dr. is away until Feb 27 then he is retiring Feb 28 (nice huh lol) anyhow I see a new dr. on Feb. 28 who I know very well so I dont' think there will be a problem.  I am going to leave a message at my current dr about this so he can think about it and look at it and update my new dr on it also.  I know my current dr really wants to figure out what is going on, I seen him in the midst of this last week and he has never seen me like that ever.  So it really bothered him as to why my entire system was hay wire all of a sudden.  And last week I also thought OMG am I getting a cold now.  My nose, throat were itchy and burny but it wasnt' like a typical cold my nose was running and I had my head and sinuses full.  Even under my nose my skin was burning , i was using vaseline.  And my cheeks and face felt like sandpaper they were bumpy and rough and looked extremely dry.  Now they seem fine.  Very crazy the pins and needles were so bad now they have subsided.  Everything was just in high gear last week, my OB even said you are acting like your cortisol is so high, but my cortisol was fine.  Thank you again, I really appreciate the replies.

    • Posted

      You're welcome <3 Sounds like you have a solid plan in place. Maybe you can get a referral for an Immunologist / Allergist who is familiar with mast cell activation disease.

      The body temp problem is typical. I eventually bought a room thermometer so I can see if it's really cold, or if it's just me again. 25 mgs of Benadryl stops it. If you're degranulating, Benadryl will help the symptoms. It's one of the things they use to diagnose MCAD - symptoms respond to H1 and H2 blockers.

      The anxiety / feeling of doom is part of the reaction. I get "heavy head" first, then that hits. That's how I know I'm about to react. Other times, it starts with GI pain, etc or sinus/sneezing/itching.

      Most docs aren't familiar with MCAD, so they look for more common diagnoses. They are looking for horses. We are zebras.

    • Posted

      I hear you. Did you ever hear of any lung issues with it? I had what they called pneumonia but my X-rays and cat scans appeared normal but my left lung was definitely full of junk and I did not cough up much and I also had wheezing terrible. I couldn't shake the last piece and they put me on singulair and that seemed to help but I though all this was a reaction to it so I stopped it.

    • Posted

      Yes. As a child I developed pneumonia after complications from eating a piece of red candy at Mardi Gras.

      I used to have an inhaler for sudden asthma symptoms. I get "air hungry" taking deep breaths after eating certain foods, etc. Last winter I was coughing up a lot of sticky mucus. Today I am as clear as a bell, thankfully.

      There are 2 ways to go: Take band-aid Rxs to manage symptoms, or treat the problem itself. And in the case of MCAD, Rxs cause more symptoms, so the cycle continues.

      At some point you'll need to think about what you've tried, then ask yourself "How's that working out so far?" A major obstacle is having too many varients. It's impossible to tell which thing is causing the symptoms.

      Simplify your routine / foods as much as possible. Try a half dose (25 mg) of Benadryl or generic equiv. You could have a problem with the fillers in Sigulair, but the drug itself is a mast cell stabilizer. Many MCAD patients use it. But it may not be right for you.

      Once I removed the things that trigger me, my symptoms vanished. In fact, last week I was able to stop all my meds. It took about 16 months, but I've healed enough that I'm adding back foods that used to cause reactions. You can get there, but it will take effort and time. Sure beats feeling like crap all the time, though.

      After changing my diet, I felt relief in a few days. After 2 months, my cardio symptoms disappeared. GI took longer - about 8 months. And it's just recently (last month after switching to compounded meds and cutting out foods with salicylates) that my sinuses completely cleared up.

      Discovered I'm allergic to salicylates. I removed those and was able to stop all meds. If I have a reaction to a food, I'll go back to chicken and butter for a few days, then start again. Foods, Rx and chemicals are my triggers now. Triggers can change over time with MCAD. Super fun.

    • Posted

      I'm just wondering if I really had pneumonia beginning of the month. My scans really showed more inflammation and I never had a temp. My dr office just called he is almost done so doesn't want to deal with it and I am going on vacation tomorrow so when I get back and see my new dr I will deal with it with him. I just read more and more and think omg that's me. So cray

    • Posted

      Just one last question. If I am feeling good and the symptoms have resolved would that tryptase level be elevated if I have this? Just curious how the testing works. I mean I had that episode and then it seemed to resolve itself this past weekend. Each day I have one or two symptoms. Today burning In nose other days pain etc. thanks.
    • Posted

      Symptoms come and go, depending on triggers and avoidance. Between reactions we have periods of time where we feel completely normal. We can also have mild lingering symptoms that last weeks or months. During these times, tryptase may or may not be elevated. The numbers don't seem to correlate with severity of symptoms.

      For example, I have almost no symptoms, I stopped all my meds, and my tryptase is actually up a bit - to 8. I feel great. My friend, ont he other hand, is suffering horribly, eating only ground beef, and reacting daily. Her last test came back with a 4.

      Apparently, at 11, you can get a bone marrow biopsy. And at 20, you are diagnosed with mastocytosis. Some sources say the rate of rise is directly proportional with the progression of the mast cell disease.

      Tryptase is a bit complicated. In a nutshell:

      "Tryptase is an enzyme that plays a role in allergic reactions. It is found primarily in mast cells – specialized cells located throughout the body that become activated in response to the presence of an allergen. Mast cells can also release histamine, another chemical involved in allergic reactions.

      Concentrations of tryptase in the body are usually pretty low, but they rise quickly when mast cells are activated, then tend to return to normal after several hours or days. Tryptase is normally contained within cells except in cases where mast cells degranulate – i.e., release their contents – as part of an allergic response. Tryptase levels are highest during severe, life-threatening allergic reactions (anaphylaxis) and with mastocytosis, a rare disease that results when there are too many mast cells in the body.

      Plasma levels of tryptase are usually too low to measure in individuals who don’t have mastocytosis or anaphylaxis. He said a better question is how to prevent mast cells from degranulating and releasing tryptase, as well as histamine and other chemicals that mediate allergic reactions."

      Search Google for:

      Mast Cell Disorders Forum - Do Tryptase and Mast Cell level go down Wallack

      Patient questions: Everything you wanted to know about tryptase MastAttack

    • Posted

      Hi. My tryptase came back at 3.5. Crazy because I have every symptom. I still have days where like last night I felt all stuffed in head like allergy and felt thick mucous. I took Benadryl and it helped. I also have a little wheezing at times. I dot. Feel sick though. My nose feels allergenic. Also I have these weird sensations in my body mostly chest like a vibration like I have a cell phone in my pocket. I almost feel like I'm super sensitive. My dr said great and healthy and that all my symptoms were an immune allergic response to something and I don't have mast cell. That's my new primary dr saying it and he knows nothing about it he told me but he ran the labs. Anyhow I don't know where to go from here. Thanks.


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