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Hives, Anaphylaxis, Fatigue, Abdominal Pain...can anything help me?
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supertgrl posted:
Hello Everyone,

I am a 21 year old, female, athletic, college student. In the past few months, my health has deteriorated. Prior to this I only got the occasional cold.

Well, it all started in July 2012 I broke out in hives on my leg while taking a shower. At this time I had been living in Connecticut for a summer internship for about 6 weeks. Long story short by mid-August 2012 I was getting hives on an almost daily basis in different spots on my body (and sometimes my whole body) I changed to more mild soaps, detergents, shampoo, stopped wearing perfume, etc...nothing helped. Every time I broke out, I would take benadryl, which also didn't help.

The second to last week of August I returned to school in Pennsylvania. I went to the doctor and she referred me to an allergist. The day after I saw the Dr. I was shopping with a friend and my eye suddenly became swollen. Since I was getting allergy testing at the end of the following week, I just put ice on it. By the next morning the swelling had gone down a significant amount. 14 hours later I ended up in the ER with swollen lips and tongue. The ER gave me benadryl and steroids and w/e they do, however the swelling just kept getting larger...and I ended up staying in the hospital for 4 days. The hospital tested me for autoimmune diseases, thyroid problems, and did a CBC. Everything came back normal.

The day after I got out, I saw the allergist who did some allergy testing. Nothing came back positive. So he took some blood and tested me for hereditary angioedema, autoimmune problems, thyroid problems, and more allergies. Everything came back normal again. He suggested that I start taking Allegra and Zyrtec also. I started taking it, but I was still getting hives. I went back to him a few weeks later and told him the allegra and zyrtec weren't working, and he said well maybe this will just go away...it didn't.

The hives continued throughout October and then in mid-November 2012 I ended up in the ER, once again, with the lips and tongue swelling stayed in the hospital for 4 days. After I got out, I saw my Dr. (who was no help other than to say that I need to stop dying all the time) and my allergist. The allergist put me on singulair, zyrtec, allegra, and tagamet. Two weeks later I ended up in the ER again with facial swelling, hives, and abdominal pain. Since I had the abdominal pain, they did a CT scan and found an ovarian cyst, gave me some pain meds, pumped me full of benadryl and steroids, prescribed me more anti-histamines, and let me go home. So at this point I was taking the following on a daily basis: Zyrtec, Singulair, Tagament, Allegra, Zantac, Prednisone, Zofran, and Vicodin.

On Monday I saw a new allergist again who concluded that my hives and swelling were not caused by an allergy or an autoimmune disease. He said that my immune system is responding to "something" and that we need to find that "something". Then he told me about a patient who had a cyst that caused him to have sinus infections, and once they took out the cyst he never had one again. So off to the OB/GYN I went to get my ovarian cyst checked out. OB/GYN said this cyst isn't causing your hives or pain or anything for that matter, it's too small.

So here I am, still in pain, still having hives, still fatigued, still haveing swelling (mostly my ears and cheeks) and still no answers. My GP said that I just need to wait till this "goes away" and the allergist doesn't want to see me for another two weeks.

Every test I have had has come back normal, my CBC is always normal, and my CA-125 test was normal as well. What should I do next? Is there a hives specialist I could go see? I know that some people have idiopathic urticaria but they don't have these other symptoms along with it, at least from what I've read. I know something just isn't right.
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Aqua14 responded:
Do you have the opportunity to go to an academic medical center for a full workup? Academic medical centers see the "different" and challenging cases that typical practitioners can't solve. Were I in your shoes, that's what I would do.

One thing pops into my mind from all my reading on allergic diseases, particularly because of your and and ovarian cyst, and that is the role of sex hormones in causing angioedema. In your case, it might be progesterone that prompts the angioedema.

You sound very intelligent; if you go to the professional allergists' website (aaaai.org) and type into the search box "hormone" and "angioedema" you will get many "hits" which you can read, explore, and discuss with appropriate physicians.

However, keep in mind that I am not a physician, just someone who has done considerable reading when I first developed allergies and asthma within the last decade. Still, an academic medical center might be best suited to delve further into your medical mystery.

Hopefully some of these ideas will assist you. Take care and good luck. Judy
It's never too late to be what you might have been. ~ George Eliot. A journey of a thousand miles begins with a single step.
 
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mrswhitecastle responded:
Did you only get allergy tested that one time, right after getting out of the hospital?

If that is the only time, I would get re-tested. The hospital administered meds that could interfere with allergy test results.

I don't know if all allergists agree with this, but I'll repeat what our allergist told us. She said that testing shortly after a severe allergy attack may not be accurate. To get the best results, you need to wait several months after a bad attack to get tested.
 
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supertgrl replied to Aqua14's response:
Hey Judy,

Thank you so much for your reply. I did not think anyone would take the time to read my post since it was so long. I'll definitely begin looking into academic centers.

Have a great evening. And thank you again.

Very Respectfully,

Taylor
 
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supertgrl replied to mrswhitecastle's response:
Hey Mrs. White Castle,

I have tested since that hospitalization, 3x's to be exact. I just didn't feel it was really worth adding to the story since it was already quite long. Unfortunately, I haven't had the opportunity to go several months without having an attack to get the accurate testing your allergist speaks of.

-Taylor
 
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supertgrl responded:
Update:

I have contacted a few academic centers via telephone, and they all say that they need a referral in order to see me (even thought I have PPO insurance). I asked me GP for one, and she said she she wasn't going to do it. I also asked my allergist, but I have not received a response from him yet.

After some extensive googling and directory searching, I decided to begin contacting Dr.'s directly via email (no one publishes their non-office numbers on the internet, which is smart). One of the doctors I contacted actually responded. He said that he would speak to his colleague about seeing me. I am trying to be patient and see what is eventual response will be.

In the meantime, I have developed a new symptom (night sweats) in addition to the symptoms from before. Here is my entire list of symptoms:
  • Hives
  • Angioedema (on my ears daily, appears on cheeks a few times a week, thankfully nothing hospital-worthy lately)
  • Fatigue
  • Stomach Pain on the left side
  • Night Sweats (started Friday 7 Dec)

I've also cut down my meds to just Allegra and Zyrtec since they weren't working and probably doing more harm than good. The Allegra and Zyrtec still aren't helping at all but at least I can say that it's definitely not a histamine related issue when I see my next Dr. Also, the hives and angioedema have not gotten worse since Saturday...

My question is how do I get a doctor or academic center to see me? I feel like no one is taking me seriously since I'm a 22 year old college student. It's so funny that all my friends amily, and even the dr.s I've seen in the ER think I should definitely seek more opinions, but I can't seem to figure out how to do that. Any suggestions?
 
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Aqua14 replied to supertgrl's response:
Are you taking any other medications -- whether prescribed or herbal? Just a thought.

Since you are blocked by your GP from getting a referral to an academic medical center, you may want to get another workup from a second, good, primary care physician who will have a fresh perspective on your situation and no preconceived notions. With the addition of the night sweats as a symptom you may have a condition not connected to allergy/immunology. There are some viral diseases, for example, that cause hives.

I can only recommend that you keep being assertive until you find the answers.

Personally I would be really annoyed if my GP stopped me from getting a referral in a reasonable situation like this. Mine just referred me to a podiatrist on a foot-related issue and didn't feel like I was going over her head to go to a specialist. Good doctors welcome other doctors' opinions.

Hope these few thoughts help you decide what you want to do. Take care & good luck. Judy
It's never too late to be what you might have been. ~ George Eliot. A journey of a thousand miles begins with a single step.
 
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supertgrl replied to Aqua14's response:
Hi Judy,

Thanks for the reply!

I actually ended up contacting the academic center myself, and they saw me the ext day. They increased me allegra and zyrtec dosage, and cut out all the other meds. I began to develop daily random low-grade fevers, and then ended up in the ER with another reaction (hives, abdominal pain, and throat closing) a week later.

When my allergist found out about my most recent hospital adventure, he did quite a few tests with the following results:
  • Chest Xray was normal
  • All blood work came back normal including thyroid, ANA, CBC, CRP, ESR, and some other things I can't remember
  • Throat Culture was positive for strep
  • Urine Test was positive for bacteria
  • Sinus CT revealed a mass in my maxillary sinus

My allergist personally called me about the CT scan results and said I needed to see the ENT ASAP (this was the Friday Dec 21st). Unfortunately, I went home for Christmas break, and will not be able to see an ENT until my return in January.

Until then this is the plan:
Continue taking the Allegra, Zyrtec, and Tagamet
Start taking Prednisone, Amoxicilin, and Doxepin
Rest
Hydrate
 
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undefined replied to supertgrl's response:
Western medicine is highly advanced in many areas but has it's limitations. I recommend trying a natural approach such as a candida cleanse. Look up the Gerson Institute on YouTube. The natural approach to healing through nutrition. I attended a seminar that changed my life and even hear Charlotte Gerson speak at the seminar. Their approach is designed to help cancer patients but may be used for other illnesses such as arthritis, limes disease, diabetes, etc. the great thing about it is you don't have to buy any random products sold by them. There are many testimonials about people that have gone through the program and have literally used their kitchen as their pharmacy. I controlled my cholesterol by doing a modified version of the program. The reason I followed the program is because cancer runs in my family and I wanted to be proactive with my health. Hope that helps!


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