Hello everyone,
I have spoken to Ben via YouTube about my experience, but I will repeat myself for the purpose of updating everyone who is not aware of my history.
When I was in the 6th grade (about age 11), I had the shingles and as soon as that cleared up, I began to get a prickly feeling (like fire ants were biting me all over in waves) when I got a hot. I could still sweat and didn’t have any visible signs, other than getting my dance moves on. I was so young when it started that I thought everyone had it until that awkward moment when I mentioned to my mother, “You know when you get too hot and get real itchy because of it?”. When her reply was a very confused “No”, I knew it wasn’t normal. I always was an odd child, but I mean, seriously?
Between it only being more of an annoyance and hearing stories of phantom sensations after having the shingles, I just figured it was that and never sought any medical advice for it. Those assumptions, you know.
I am almost 36 now and over the years, more so in the past couple of years, it has gotten slowly worse. Now I experience anaphylaxis, hives, flushing, fever, only sweat on my face, swelling in my hands and feet, weakness, etc. (every symptom you can imagine), and it covers nearly my entire body down to my calves.
I have had “allergies” (I will explain the quotations later on here) to so many things it isn’t funny. I have IBS-D. I have eczema on my hands and the tops of my feet (only when I wear tight shoes) that is very itchy and causes these tiny blisters that look like wholes in my skin (I can’t remember what it is called). These things along with other health issues have been and become a real pain.
A couple of months ago, I began to go to my allergist. With the oddest luck, they put me in a lukewarm room and I had an attack right in front of her and her staff. She diagnosed (what she called the worst case she had seen…she even has me carry a letter from her around because of it) me with Cholinergic Urticaria, requested some blood work to test for other allergies, and put me on a step program of 4 Zyrtecs, 1 Zantac, and 1 Singular a day and an Abuteral inhaler when I needed it. It has slacked off some, but not gone. She also noticed I had KP and issues with the skin on my face.
I went back the next month to discuss my progress and the results of the blood work I had done. All of my allergy tests came back negative (despite my reactions to these things). She actually didn’t seem surprised because, according to her, most cholinergic urticaria sufferers tend to have negative results to them.
When her nurse was taking my vitals, I was in a tachycardia. This isn’t a surprise to me because I have had an AVNRT ablation for it (which helped but did not take it completely away), have hypertension with episodes of hypertensive crisis, and erratic blood sugar levels for many years. However, this nurse is also a nurse in cardiology and it scared her half to death. I didn’t even think anything of it until my allergist mentioned to me that I scared her nurse because of it. I just laughed and felt so bad for her.
However, it sparked my allergist’s curiosity and she ordered a 24hr urine sample for histamine and metanephrine levels to test me for mast cell diseases and an adrenal gland tumor. I got those results in my MyChart (I go to the Cleveland Clinic system) today and I am not sure exactly what to make of them. I am waiting for an explanation from my allergist in the next few days. Here are the results though:
Metanephrine:
162 (52-341) ug 24hr
Normetanephrine:
454 (88-444) ug 24hr
Total Metanephrines:
616 (140-785) ug 24hr
Histamine:
329 nmol/L
Creatinine:
65 mg/dL
Histamine nol/g Creat:
506 nmol/L Cr
Ref. Range:
0-450 nmol/L Cr
Now, if you can make heads or tails out of it, be glad to give me input. I will keep everyone up to date.
Thanks,
Mary Lou
Anonymous says
MaryLou. I am so sorry you are experiencing these symptoms. However uncomfortable for you, it’s comforting knowing we are not alone in our health struggles.
Anonymous says
Yes, please do keep us up to date on your situation. I am so sorry you’ve had to endure this. I will pray for you daily that you can get some relief. My son has CU. He is 31, and is dreading fall and winter, which is when his is at it’s worst, but nothing quite like what you have dealt with. Again, I’m so sorry. And I WILL pray for you.
Deborah says
MaryLou, your IBS and eczema are the clue and related. Our immune system begins in the gut. You, like so many of us, have leaky gut which is an instigator for our histimine sensitivities. Look into Dr Axe.com for health advise.
Deborah
Anna says
I broke out in fine sand paper like hives on my abdomen and back after 45 mins. Of exercise. I was indoors but broke out in a good sweat. When I got home from my workout, I ate 2 tbsp of cottage cheese and had 4oz. Of low sodium v8 juice. I took a warm shower. That’s when it got worse and I didn’t know what was going to happen next. I quickly took a Benadryl tablet and kept getting ready for bed. When I went to bed the base of my neck and scalp started to itch. I just tried to calm down and go to sleep. The next day I took a Claritin in the morning. The rest of the day I still had some mild itching on my upper abdomen, but it resolved by the end of the 2nd day. I had been taking Pepcid for about 25 days before this event, that I was prescribed following my recent gallbladder removal. I had never had this before, and I can’t believe I have this. I thought it was an allergy to something in the v8. I had allergy testing, results pending. Yesterday, I exercised and I immediately began to develop fine hives after I got home. I grabbed 2 ice packs and put them on my abdomen and back. I washed my face with cool water and put some on my head and neck. The cooling, seemed to reduce and slowly stop the symptoms. I didn’t have to take a Benadryl. I am 54 and never had this. I love to walk, bike, Zumba and swim. I am really upset about this. About 5 years ago I had a food allergy, hives, light headed east, shortness of breath, nausea, vomiting, diarrhea, after eating a pastry like sushi topped with bright green colored seaweed. I was treated in the ambulance with iv fluids and iv Benadryl. I hate to think that was the start of this. Bummed!
Hivesguy says
I’m very sorry to hear of how things have been going lately, Mary Lou. Although I do think that allergy tests can be helpful, they certainly won’t pick up everything. There are many ways that foods can cause problems in the body besides traditional allergic responses.
It sounds very much like your body is having very serious reaction to something in your food or environment. I also had itchy bumps, IBS, hives, and KP. Again, the diet and probiotics (Digestive Advantage Lactose Defense works best) have been the biggest factors in eliminating my IBS, eczema, and hives.
I’ll keep you in my thoughts and prayers. Keep us updated on how things go.