Severe and recurring anaphylactic shock

[cheragain]

I have been in the hospital twice in 24 hours with an anaphylactic reaction and 3 times this week as well. I have not been doing any one thing and it has not happened at any of the same times or places. I had not consumed any food beforehand and have not changed any detergents, fragrances, soaps or otherwise. I moved into a new apartment 2 weeks ago, but have only had one episode in my home. I have been given a shot of epi 3 times this week alone followed by benadryl, tagment, solumedrol, and a medrol dose pack. They are continuously recurring and I am afraid to be alone. It has gotten to the point where they have told me that if I so much as get a single hive that I need to administer my epi-pen in an attempt to keep my airway open. I was also told that this is so severe that I will likely not make it through one of these attacks if they persistently get worse. I know I have several allergies but at least with those that I have suffered I know what they are. This one makes no sense and happens at random intervals. Last night my throat swelled shut, I had hives in my throat, my eyes and lips were swollen as was my neck, this morning my lips swelled and my throat had hives in it again and I was short of breath and once more ended up in the ER. I have been at different places for all of these attacks and they are getting more violent. The doctor had advised me not to be alone until I can consult an allergist which will not be until Monday. My hives are still active at present however the swelling of my lips has stopped with 75mg of Benadryl, 25-50mg Atarax, 10mg Claritin and a medrol dose pack, but I still suffer from the hives and itching despite the medication. My loved ones, as well as myself, are terrified and refuse to leave me by myself. I am afraid to eat, or do any of the things I would normally do. If anyone has any advice, I would truly appreciate it. Thanks

Cher

[TStull65]

My husband suffered from severe hives and anaphaxis that had an unknown cause for a good while. They finally discovered that he had beome allergic to red meats from a tick bite. The strangest part about this was the symptoms didn't show up for 3-6 hours after eating the allergen.This made it very difficult to diagnose. Have you been tested for the alpha-gal lactose allergy? Just a thought.

[Stacey0781]

I am 34 yrs old and was diagnosed with mast cell activation syndrome 3 yrs ago. I went through the exact same thing you are going through. I was intubated 5 times for anaphylaxis before I was finally diagnosed. I live in Cincinnati, Ohio. I visited the allergy and Immunoology Department at the Cleveland Clinic. From there I had a bone marrow biopsy done and My diagnosis was complete. I received chemothrapy and now am on maintence drugs to keep my flare ups to a minimal. It is very hard to get the diagnosis and at times when it was really bad, as it seems to be for you, to think the doctors are looking at you like you are crazy! You just need to see the RIGHT doctor to get the right diagnosis. My life has been much better now that I have treatment and my flare ups are less frequent. Please consider seeing a oncologist or allergy-immunologist to help you better.

Stacey

[ChitChatNine]

Hi,

Thanks so much for stopping back with your update!

Have they tested you for latex?  Do you carry an epi pen?

My daughter is anaphylactic to latex ... it's in a lot of things .. more than we realize as you mentioned above.

C~

[cheragain]

I have been diagnosed with mastocytosis. It is a rare disorder that causes your body to release too many mast cells and produce too much histamine, ergo the severe non-stop allergic reactions. They have to do a skin biopsy and bloodwork to confirm it, but it is worth looking into. It took almost 6 months to get a diagnosis for me.

[Clucka]

Hi There
My sister has exactly the same as yourself and has had up to 6 in 48 hrs. is there anyone you could point in my direction to get more information from any specialists?

Thanks

[cheragain]

This is an interesting scenario. It turns out that I am allergic to the new paper they are using to make cigarette filters! It makes sense though, the timeframe fits perfectly and it appears that they use a byproduct of latex and something that is used in carpet glue in it. If only it were easy to quit and avoid my allergen like it would be with anything else. I am relieved to know what it is that is causing this though, although I am very upset by the fact that they did not warn consumers about this switch and the chemicals in the paper.

[cheragain]

I have never had anyone consider mastocytosis. In reading through the symptoms, it does seem to be as fitting as any other diagnosis they have considered. I will definitely bring this up to my allergist. I am starting to have one of my reactions as we speak, so I reckon I will be at the allergist's office before the end of the day anyhow. Thank you so much!

[cpreg]

hi,
so sorry to hear you have been going through such a rough time.  i came across your post looking for info re: a penecillin reaction but your story makes me wonder if you have ever been tested for something called mastocytosis.  it is a disease of too many mast cells (causing allergic reactions) and/ or mast cells that are irregular and release too much histamine into the body. in any case, might be worth checking it out or mentioning it to your doctors.  i know there is a blood test they can do for your tryptase levels to see if they are abnormal - if so, they may proceed to other testing to confirm diagnosis.  it might be a shot in the dark, but you never know.  i wish you all the best.  stay courageous.

[cheragain]

Well, the thyroid panel came back normal..... back to square one

[cheragain]

Today they discovered that I have lost in excess of 40 pounds since the end of August without dieting and with eating more than normal. They suspect a hyperactive thyroid and think that may be the cause of my episodes. I will keep you all updated as soon as I find out for sure.

[cheragain]

I wish I could say it was better, unfortunately it is happening daily and is more severe. I am beyond frustrated and am just beside myself. They cannot get a handle on it and have no clue what is causing it. I went to the allergist today and had an episode there. They gave me Epinephrine, Benadryl, Zyrtec and a shot of steroids. Aside from the sore hips and arms from the shots.... I am still the same as I was while I was there. I so wish they would figure this all out, but it seems as though they never will at this point. :(

[dpthots]

It's really sad that anyone has to try to be their own doctor, that we have to be here at all. I feel like I have found the answer to my monster, and I hope I can help others figure out theirs.

Sadly, I have seen so many people here that have problems that I understand, and suspect are somehow the same problem that I have had. (Even though their symptoms differ, the general story sounds eerily the same) It is extremely depressing to go to the medical community for help, and made to feel like I you are a whiner, until things get so bad that they have to deal with it. Then, they make it worse, because they are "treating the symptom with the cause" (I made that term up)

Everyone should study antibiotics and fungus infections, I think it is the covered-up epidemic of modern medicine.

Interesting that antibiotics are quietly being removed from livestock feed- sorry, I should be responsible and cite the source of that, but I forget.

Well, I better shut my yap, I'm sure you'll catch my preaching somewhere else. I'll be bringing it up lots, I'm sure.

If our Doctors were Mechanics, we'd all be walking. I wonder if the AMA has ever hired hit men-         hmmmmm

[care_berry]

That's a very interesting comment about fungal allergic reactions dpthots. I hope cheragain saw that. This is all so very sad. I wish I knew more of what to say. There's got to be things that can be done. I really hope they got back to you on that cheragain.

[dpthots]

My first suggestion would be to write down your activities for the last two weeks (back to just before this started) and see if you can find something you did, or someplace you went, prior to these attacks.

You said that only one of the episodes was in the house, so maybe it is something, for example, in your cars air system. (?)

Another thought I had was this- I read somewhere that an allergy to one thing can be triggered by exposure to something else. I guess I am theorizing that although you had one episode in the apartment, could it be something in that apartment that is triggering a response to some other allergy.(?)

Sure sounds like the new place is part of the problem, as you haven't mentioned any problems prior to moving. Have you  tried an air cleaner, or staying out of the apt for an extended period of time?

Curious thing- that with all the allergy stuff you are on that you still have symptoms. Perhaps exploring Fungal Allergic reactions and/or infections would be worth your time, there is a lot of info to be found online, and Doctors seem unaware, as far as I can tell, although I have read a lot of stuff authored by doctors.

Good luck, I almost lost my son to anaphylactic shock. Had to go back and cover all the things he was exposed to right before that.

[cheragain]

Unfortunately I still have not heard anything yet. I ended up in the hospital again yesterday with another episode. I am so frustrated with it all that I could just about care less what they come up with so long as I know what is going on.

[care_berry]

Hi there Cheragain! I just wanted to check back and see how things were going. Sad that they haven't gotten back to you yet. Hopefully they have by now since you wrote this yesterday. I know on the website that I sent you that they also have some other people on there that may be contacted. I don't know if you saw that part. Maybe someone on that could help you as well, even if it is medical intuition. That's just so baffling what you are going through. One of them I read is an EFT specialist and a couple of them are doctors too. I would probably go with one that is a doctor though. There's got to be help out there for you.

[cheragain]

Lord what I wouldn't give for a solution as I sit here all swollen and wide awake like I have been all night :-( I haven't heard back from that person you referred me to, thank you so much for that.

[care_berry]

Hi again, I just wanted to let you know that I sent you a private message on here.

[cheragain]

Thank you so much for translating. They have yet to discover it and I have been advised to relocate near a specialty hospital and not to be living alone because they are getting more persistent and more severe. I did move this past week, to live with my boyfriend, and am on 12 different medications to include beta blockers, antihistamines, eyedrops, antibiotics and steroids and I am still having these episodes. The allergists are baffled and do not know what the cause is. I have developed several types of infections as a result of my insides swelling and becoming inflamed during these episodes. All they can do is administer epinephrine and a few choice cocktails and hope for the best until all of my blood draws testing for allergens come back. I am not a candidate for skin testing because I cannot come off of all of my medications especially since I am having these episodes while on them. It is scary in all honesty because I don't know what to eat.... or what to and not to do. I lost my job from time missed from work and am just praying for some answers at this point.

[care_berry]

I thought I would translate here since you said you didn't understand and I just came across the message. He says he is an asthmatic and has allergies as well. He thinks that surely there is something in your new apartment that is causing your reactions. Even though you aren't there, the thing is in your respiratory system already from breathing. He says it could be the paint on the walls, carpets, or mites that may be hiding in the wood. It's really important that your allergist detects the thing you are allergic to and you are going to be able to fight it off with allergy shots. He says for example, it could be that you are allergic to camel's fur, but since you are never going to come into contact with a camel, then you are never going to have this allergy show up. But if you come across one in a zoo, it can take 3 times after coming into contact with the animal before the allergy may show itself. Air out your bedroom, don't sweep, clean it out with a humidifier or humidity (hard to tell what he means here and am guessing) and he hopes that your allergist discovers the allergen.

Also, just a question from me but did they ever figure out what the allergen was? I hope you are feeling better!!!

[cheragain]

I do not understand spanish.

[veroka77]

HOLA SOY  PACIENTE ASMATICA Y ALERGICA.SEGURAMENTE EN TU NUEVO DEPARTAMENTO HAY UN ALERGENO ,QUE TE PROVOCA ESTA ANAFILAXIA.AUNQUE NO ESTES EN EL , YA ESTAN EN TU VIA RESPIRATORIA.PUEDE SER LA PINTURA DE LAS PAREDES ALFOMBRAS O ACAROS QUE ESTEN EN LA MADERA POR LO GENERAL SE OCULTAN AHI.LA HUMEDAD .ES MUY IMPORTANTE QUE TU ALERGISTA DETECTE QUE ALERGENO TE ESTA PROVOCANDO ESTOS ATAQUES Y CON VACUNAS LOS VAS A PODER COMBATIR.POR EJEMPLO PUEDE PASAR QUE SEAS ALERGICA AL PELO DE CAMELLO ,PERO COMO NUNCA VAS A TENER CONTACTO CON UNOCAMELLO NO VAS A DESARROLLAR LA ALERGIA.PERO SI TE TOPAS CON UNO EN UN ZOOLOGICO BASTA TRES VECES QUE TENGAS CONTACTO PARA DESARROLLARLA.VENTILA TU HABITACIÓN ,NO SACUDAS,LIMPIA CON HUMEDAD.Y ESPERO QUE TU ALERGISTA DESCUBRA EL ALERGENO SALUDOS.