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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Shock again last night http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1311973330 Message started by Riverwn on 07/29/11 at 10:02:10

Title: Shock again last night
Post by Riverwn on 07/29/11 at 10:02:10

I do that even when I stay out of the heat and I dont know why, Its as if my body knows how bad the heat is circulating waiting for me to walk outside LOL... Lastnight 2:35 am, I did it again, I broke into hives turned bright deep red started swelling--lips, eyes, inside ears, scalp and all over skin.. I took my emergency prednisone 80 mg , 1 zantac 300 mg and a Xanax so I would stop freaking out... I seemed to do better for awhile and dozed off.. I woke at 4:30 am much worse and panicking! I called 911 and took 1 Vistatril , 1 Singulair and 1 Chlortrimeton to protect my heat against allergic angina...

it took them maybe 35 min to reach me bu they were wonderful having my ER notebook to check into.. at one point they stopped asking me questions and said "Shes got it all in here already, this is faster' I was really proud of myself. They gave me Solu Medrol IV ( It REALLY helps me) noemal saline fluids, 40 mg more Benadryl IV push and Pepcid IV (they dont have Zantac,, thats why I took it ahead of time). I tested positive for the same UTI and they xrayed my horribly painful right knee and found extensive osteo there. I rested for about 5 hours and went home when my ECG was normal (and hives had started ti fade.Im home now and sleeping sleeping... Hoping you all have a great weekend and dont be afraid to take what you need to keep you safe!!

Hugs

Ramona

Title: Re:Shock again lastnight
Post by Riverwn on 07/29/11 at 10:04:18

PS if you dont have an ER notebook, MAKE ONE NOW!! This is a MUST and may very well save your life!!

Title: Re: Shock again last night
Post by Lisa on 07/29/11 at 10:27:11

OH MONA!!! :o :o :o :o :o

I CAN'T WAIT FOR YOUR DOCTOR'S APPOINTMENT!! :'( :'( :'( :'( :'( :'(

:-* :-* :-* :-* :-* :-* :-* :-* :-*

Title: Re: Shock again last night
Post by DeborahW, Founder on 07/29/11 at 13:44:33

Oh I am so glad you are better now! Living in Florida, you have it so much worse than we do during the summer. I just couldn't do it! I totally get how you got sick even though you stayed indoors. Has happened to me (not extreme symptoms like yours, though!). Stay cool and well now!!

Title: Re: Shock again last night
Post by Riverwn on 07/29/11 at 15:36:42

Sorry Lisa, I will keep my appt and see him I just dont think its gonna help me much more than what Im already doing... His clinical trials are on Midosaurin and Im not sure if that would help me.. I just think that an IgE of 1330 says it all.. normal is anything under 100. Its so close to shocking it takes very little to provoke it. Like this UTI.. isnt isnt going anywhere it hangs around like a slinking animal lol.

They have me on Augmentin now with 60 mg prednisone.. I think Im gonna live my life on this lol... Im making strides... I just wish it was faster :)

Debbie the heat here is soooo bad!! Today I finnally closed off one room with the AC to make it through August with less trouble.. In Sept I'll take the blankets down but for now its needed andddd cooler!! Im seriously thinking of moving north.. just not sure where I would do best living.. I know that it needs to be next to a hospital lol (I got yelled at last night!!)... Heres hoping for an early fall and winter... cant wait for those cool breezes...wheeowww...
love you both
me

Title: Re: Shock again last night
Post by DeborahW, Founder on 07/29/11 at 15:42:57

Indianapolis has lots of good hospitals with lovely areas to live around them. LOL! And I can guarantee you lots of freezing ice and snow, sometimes from November through April! [smiley=grin.gif]

Title: Re: Shock again last night
Post by Riverwn on 07/29/11 at 15:52:54

You might just get your wish,. I have a sister living in Cincinnatti and she making alot of noise for first place lol.. Id love to be near enough to you to watch the girls do their thing and do lunch with you now and then :)

Title: Re: Shock again last night
Post by DeborahW, Founder on 07/29/11 at 16:04:10

Seriously, you should think about moving to Cincy near your sis! I don't know how you survive the Florida heat most of the year. Imagine if your symptoms got way better simply from being in a different climate. Plus, it's not as if your choice of doctors could be anything but WAY BETTER. And guess what? It is only 1.5 hours from Indy! Wouldn't that be cool for me to come down to Cincy and visit, which would be safer since I am "Miss Stable" in regard to symptoms!

Title: Re: Shock again last night
Post by ruth on 07/29/11 at 20:03:03

Sorry to hear you've had another episode Ramona, I don't know how you stay sane through these extreme ups and downs. You are a great role model in terms of taking control and being your own advocate and expert on your own individual health and needs.

I am curious to know more about your understanding of the elevated IgE. I have drawn a blank with every doctor I have asked about this. Cameron's is around 2000 when he is not experiencing severe symptoms, almost 3000 when tested during a flare. He has not tested positive to any specific allergens or autoimmune markers so the immunologists dismiss it as if it means nothing. It must mean something! What do you think is going on in someone with elevated IgE that can't be identified as being for a particular (common) allergen?

Ruth

Title: Re: Shock again last night
Post by judy on 07/30/11 at 00:16:36

Hi everyone,
Sorry about whats happened Ramona, I too am very interested in the IgE thing. Jarrod has as high as 1800 and his low was about 900. Have not had one done in over a year. Jarrod has had 2 significantly different skin prick tests.
Ramona maybe we can swap our weather at the moment.LOL.
Jarrod does better in the summer than the winter. It is freezing at the moment here in oz.
Take care
Judy

Title: Re: Shock again last night
Post by Patricia on 07/30/11 at 03:43:06

Hey Ramona I hope you're feeling better and I'm so sorry that you shocked!
The heat is awful for my husband even when he stays inside but he gets even worse when it's REALLY humid outside. It's like youre battling all these other triggers and it's really hard to control 100 degree temps! Our home looks like we are in mourning...all the shades are down to try and keep the house as cool as possible.

About these famous IgE's!!! I would love some answers as well! My husbands are in the 9,000 to 15,000 range, stat 3 gene is negative for hyper IgE syndrome. There is a type 2 hyper IgE syndrome and from what I gather it can cause dermatitis, eczema, recurrent bacterial infections. My husband does have a tendency to get these and it takes forever for them to go away.

We still don't know why my husbands immune system is making so many of these antibodies. At my husbands levels it could indicate a parasitic or bacterial infection but he's been tested and retested for these. He had hpilori 10 yrs ago, had allergic reaction to antibiotic and it took yrs to clear up. I personally feel like this virus caused his immune system to go into overdrive.

But then both my daughters have elevated ige's 350 and 1650... The one with the lower ige's has more allergic episodes than the one with the higher ige's.

I also know that for my husband what if his body is fighting a cancer or malignancy and then we try and lower his ige's artificially with (gleevec or xolair) and it could open him up to getting that cancer.

We are still waiting for more gene studies to come back and will see if those reveal anything. I'm the meantime we are starting acupuncture to see if that could help calm his overactive immune system.

Ok so here is another crazy thing I heard from a naturpath that we went to see: she said I'm just going to put this out there and you can research it...there is an ancient auyrvedic tradition that a lot of people with HIV or cancer have started doing and it's called auto urination therapy! Yup! I almost fell off my chair...I thought I'd heard it all! You drink your own first morning urine within a hour! Because you pee out your own special unique blend of antibodies and when you ingest it you are immunizing yourself to whatever your body is fighting! What about all the meds he takes...does this mean I could pull back on his anithistaimes since he'd be reinjesting them? This is the most economical treatment I've heard so far! Considering how expensive gastrocrom is this would be a lot cheaper! Kidding!!! I did google it and I guess people actually do this.

Like I said I thought I'd heard it all!

Anyway back to the ige's anyone's thoughts or ideas as to why my husbands are so high would be greatly appreciated! or how to lower them would be really really appreciated!

Title: Re: Shock again last night
Post by Joan on 07/30/11 at 09:56:52

First of all, Ramona. So sorry to hear it's attacked you again! Glad you're feeling more stable. The heat is awful here, too. I haven't gone for a walk a a week. Too hot, even at 9:00 at night. If I were thinking about a move, I'd go visit there for a while first and see how things went. Could you rent out your house for a while?

As for the auto-urination therapy, my gut response is, "EEEEWWWW!"
I'd try almost anything if it would help, but I'd have to be really, really convinced that it would help.... My real concern would be that most histamine is produced in the early morning hours, and I wouldn't think it would be a good idea to re-introduce that into the body.

Title: Re: Shock again last night
Post by texan1960 on 07/30/11 at 11:16:05

Ramona!

Living in the sultry south can have its drawbacks! As in, we can't go outside the whole months of July and August! I hope you are feeling better...I know you were puzzled about why it happened even though you were inside...have you ever been tested for mold allergy? I am allergic to basically every mold out there. Sometimes I wonder if that is part of the hot weather effect ? Just thinking, but anyway stay rested and coool.

Title: Re: Shock again last night
Post by Lisa on 07/30/11 at 12:47:13

Oh Joan, I'm right there with you, ABSOLUTELY GROSSED OUT!! DOUBLE EEEEEEWWWWWWWWWWWWWWW!!!!!!!!!!!!! [smiley=thumbdown.gif] [smiley=thumbdown.gif] [smiley=thumbdown.gif] [smiley=thumbdown.gif] [smiley=thumbdown.gif] [smiley=thumbdown.gif] [smiley=thumbdown.gif] [smiley=thumbdown.gif] [smiley=thumbdown.gif] [smiley=tongue.gif] [smiley=tongue.gif] [smiley=tongue.gif] [smiley=tongue.gif] [smiley=tongue.gif] [smiley=tongue.gif] [smiley=tongue.gif] [smiley=tongue.gif] [smiley=tongue.gif]

Title: Re: Shock again last night
Post by Riverwn on 07/30/11 at 17:39:44

Hi Ruth, Thanks for your kind words...Im not sure exactly how much I understand of this (IgE ) because it wasnt told to me by a DR Ive found this out by searching the web once I got my results--I had to know whaty it meant to my life and how to deal with it.

Judy Im sorry about those high levels with Jarrod and I would gladly trade living places with you if possible :) Until then, I wish my sunsets and fireflies to you both!

Patricia, one of my fan people :) Im sorry hubby has such extreme levels.. no wonder he has felt so badly.. Im pleased he tested negative for hyper IgE syndrome, I was a bit worried about that myself but I dont think it applies to me.. I do however think I have the IgE nephritis... along with the IC. I jbow what you mean about dark houses for heat! LOL me too!!! Thats interesting about the naturpath/ I believe in a whole range of natural medicine. I know that urine from the body is sterile until it leaves the body. Ive never heard of it in that way but anything is possible.. I know urine is seen as a healer in other parts of the world and in arab lands there is an old saying "There is never a man so low as one who refuses to urinate on a friends wounds". Sounds very honorable but I dont think I could ever bring myself to do it LOL...

Joan, my BFF online lol.. that ius really and seriously true.. love this woman soooo much... my online Smurfette hehe.. Yes Ma'am I am planning some visits in the future... and just the thought is making me feel good :)

Texan youre right, I adore the south but it doesnt seem to like me anymore! I think it happened because the UTI came back and I always reaxt to those pretty badly..l. This is getting olddddd LOL.

Cant forget my Lisazilla :) love ya

OK this is what Ive found (please remember Im no expert)

My IgE result is 1330 and anything under 100 is normal. Usual allergies will increase that number for people being exposed to a real allergy.

I know the few real ones I have, I wasnt exposed to one. I am however exposed almost constantly to a UTI I cant seem to shake. That seems to be common with high IgE levels.. it can somehow encapsulate bacteria that causes infection and almost protect it to start a new infection after a course of treatment of antibiotics. That seems to be exactly what is happening with me since January maybe longer.

IgE also is a type of receptor for mast cells to bind to, so... if youre being exposed to triggers the amount of exposures for a reaction to occur can be much less because of the increased IgE.

Title: Re: Shock again last night
Post by Riverwn on 07/30/11 at 17:41:13

Here is some info I saved from what I read;
normal is anything under 100.

Abnormal IgE levels can be a sign of parasite infection, an allergic reaction or some other environmental sensitivity

IgE is one of five types of antibodies, also known as immunoglobulins, in the body. Immunoglogulins are produced by the immune system in response to bacteria, viruses, fungus and other allergens that have entered the body. IgE and the other antibodies attack the foreign substance in an attempt to prevent sickness and cellular damage.

IgE antibodies are located in the lungs, skin and mucous membranes of the body. These antibodies cause reactions when a sensitive individual comes in contact with environmental allergens such as pollen, fungus spores and pet dander. Individuals who are allergic or intolerant to dairy or certain medications also will release IgE after ingestion.

Individuals with hypersensitivity or several allergies and intolerances generally have a higher IgE antibody level.

IgE is one of five types of antibodies in the body. The others include IgA antibodies, which are found in the nose, throat, ears, tears, eyes, digestive tract, saliva, blood and vagina and are a defense against outside foreign substances. IgG antibodies are the most common antibodies. They are found in all bodily fluids and are the body's defense against viral infection and bacteria.

Concentration of IgE is very low in the body. A normal IgE level is 4.2-595 U/mL or 0.05 percent of the IgG concentration. High IgE levels can be a sign of infection, allergic reaction, autoimmune disease or the presence of cancer.
----------------

Title: Re: Shock again last night
Post by Riverwn on 07/30/11 at 17:42:40

IgE antibodies are found in the lungs, skin, and mucous membranes. They cause the body to react against foreign substances such as pollen, fungus spores, and animal dander. They may occur in allergic reactions to milk, some medicines, and some poisons. IgE antibody levels are often high in people with allergies.
-------------
IgE. A high level of IgE can mean a parasite infection is present. Also, high levels of IgE are found in people who have allergic reactions, asthma, atopic dermatitis, some types of cancer, and certain autoimmune diseases. In rare cases, a high level of IgE may mean IgE multiple myeloma.
---------------------
IgE is the antibody most widely known for its involvement in allergies of all kinds. It may also be involved in protection of the body from parasites. Elevated IgE in blood is associated with a history of excessive allergies.
----------------------
Elevated values for IgE are found in allergic disorders including asthma, hayfever, parasitic infestations, deficiencies of the thymus gland, Wiskitt Aldrich syndrome, IgE myeloma, pemphigoid, periarteritis nodosa, and hypereosinophilic syndrome
------------------------

Title: Re: Shock again last night
Post by Riverwn on 07/30/11 at 18:15:27

IgE typically binds to mast cells and basophils but also to low-affinity receptors on inflammatory cells and platelets.

Evidence supporting the role of type I hypersensitivity in the pathogenesis of GN comes from reports of high levels of serum IgE (sIgE), its deposition in the kidney, IgE auto-antibodies (IgE, ANA in lupus nephritis), basophil sensitization and renal mast cells in IgA nephritis.

Mast cells express heparinase capable of degrading heparin sulphate in a sub-endothelial extracellular matrix. This provides a possible mechanism for the association between high IgE and selective proteinuria reported here.

Thats it folks... you learn alot of things surfing online!!
Thanks to all of you for your kind words and well wishes
Ramona

Title: Re: Shock again last night
Post by Patricia on 07/31/11 at 02:26:47

About the urine thing, I literally almost fell of my chair when I heard that one! I'm sure the yogis that do this probably aren't taking the amount of drugs my husband is and in theory it sounds intresting. I did look it up online and it's supposed to be a natural anti-bacterial, anti- fungal, anti everything.
It makes me smile because what if curing certain diseases was as simple as "your own pee"...can you imagine what Big Pharma would do???

I don't think I'm at this point yet and will continue to support Big Pharma and continue buy their expensive drugs! Did you guys hear singulair is going on the generic list...hopefully they won't change the formulation or fillers.

Ramona I hope you recover quickly, stay cool and huge hugs!!!

Title: Re: Shock again last night
Post by Riverwn on 07/31/11 at 06:27:49

I am so dyslexic when typing LOL Patricia the part to you read
Patricia, one of my fan people
It was supposed to read Patricia, one of my fav people LOL
sorry I sure looked a bit egotistcal, didnt I?? Made myself chuckle hehe.
love u
me

Title: Re: Shock again last night
Post by Patricia on 07/31/11 at 06:32:24

Never! I am one of your biggest fans!!!! :)

Title: Re: Shock again last night
Post by Lisa on 07/31/11 at 11:28:49

ME TOO!!!!!! [smiley=2vrolijk_08.gif]

Title: Re: Shock again last night
Post by Kate:Ohio on 08/01/11 at 03:32:55

Ramona,

I just wanted to let you know that I'm thinking about you! I can't even imagine going through that!

Take care,
Kate

Title: Re: Shock again last night
Post by Riverwn on 08/02/11 at 15:03:50

Thanks to all 3 of ya, love u!
me