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dying from my allergies and need someone to talk to

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Posted 6/30/2013 1:21 AM (GMT 0)
hi im sorry to burden all of you but i truly need someone to talk to. when i was 30 (now 49) i was diagnosed with a very rare metabolic disorder that has progressed to a point were i cant metablolize any medications. i mean this literally. my reactions to medications have continued to worsen over the years and i now have severe reactions to everything. about 3 weeks ago i was diagnosed with a severe b12 deficiency. we tried oral b12, and injectable, and am not able to tolerate it. swelling in my mouth, throat, etc. we finally got my b12 up by eating b12 fortified foods and getting off of gluten (i had diarrhea for 5 years, thats what caused my b12 deficiency). unfortunately, once i start to react to something i continue to react and now, i am severely reacting whenever i eat. i have had cardiac involvement now since monday. i was in the er all day monday. my mouth was swollen, sores in it, and my blood pressure kept going up and down. it went up to 189 over 105 at one point. it was that way all day in the er. since then it has just gotten worse. theres nothing they can do and im dying. i have no one to talk to and im terrified. i am married but my husband is terrified and so very angry. we knew this would eventually happen but something inside us just kept telling us it would be ok. someone would be able to help me. that never happened. i cant talk to him and i dont want to die alone with no one to comfort me. i am in for a terribly horrifying death. i dont even know if i will make it through the night because i ate a hamburger patty about an hour ago and we dont know what is going to happen. i need someone to talk to me....please... anyone
Posted 6/30/2013 1:30 AM (GMT 0)
this is probably not the right forum for this. does anyone know of any chat rooms for people who are dying? again, im sorry to burden you all with this.
Posted 6/30/2013 1:50 AM (GMT 0)
probably either the anxiety or depression would be the right forum
Posted 6/30/2013 2:49 PM (GMT 0)
Hope you made it thru the night!, there is a chatroom on here, you can try that...Prayers for you.
Posted 6/30/2013 6:04 PM (GMT 0)
Hello: Iwanttolive,
And thank you for asking for someone to talk to. Your post is awesome and it shows that you have terrific courage and a strong resolve. As well as you husband is both supportive and courageous as well. You have taken the right the step and in asking, seeking, and knocking on every door you can find for someone to talk too. Your desire to defeat this condition is the first thing require to get the victory over this condition.

You and your husband's belief that everything is going to be "ok" will be exceeded by everything turning out great. Your belief is the key here. It is your belief system that is under attack and it only being manifested through your body. Now rather than spent time on philosophy,allow me to encourage you to first focus now on the good times you felt in your body, the good times you've had to this point and the good things you desire for the future and think on these things.

Look to hear from you for "Iwanttolive" in a world with someone like you
Posted 6/30/2013 10:15 PM (GMT 0)
Thank you jaye, for the very kind words and chartreux for your prayers. God bless you both for taking the time to to talk to me. i went over to the chat but there was no one there. obviously, thank you Jesus, i did make it thru the night. today has been rough. alot of swelling and heart involvement. i should probably give you some background on myself. at least that will give you an idea as to why i chose the allergy room to talk to someone. i live in ohio. as i said earlier, i started experiencing problems taking medications when i hit 30. first it was an antibiotic here and there, then i was diagnosed with hypertension and had extreme difficulty with the bp meds. my reactions started out with just some itching in my hands and feet. then it progressed into itching and swelling in them, then bleeding vaginal ulcerations, then it progressed to my mouth, lips, gums, throat, difficulty breathing, etc. they tried antihistamines but they caused me to react even more. tried steroids, reacted more. finally i went to a dr who ran a bunch of tests and found that i have hashimotos (auto immune thyroid disease). since then ive been diagnosed with raynauds, lupus, cholinergic urticaria, hereditary angioedema, and psvt (paroxysmal supraventricular tachicardia). i am currently being evaluated for ms. thats where this current chapter of drama started. my dr sent me to mayo clinic twice. they did a bunch of dna tests and dx'd me with the metabolic disorder that i mentioned previously. i have multiple genome mutations on the cyp genome chain. this chain of genomes is the chain mostly responsible for metabolizing medication. there is no cure. they believe my mother had the same thing. she began having medication problems in her 50s. unfortunately, she died 15 years ago so they cant test her. i went to my dr about 3 weeks ago because i couldnt feel my right leg from the knee down. i had fallen to the floor trying to go the bathroom. i thought it may have been from the hashimotos. they did some mri's, ct scans and found that i have a demylenated area in the basal ganglia. also she did some blood work and found the extremely low b12. because of the genome deficiencies anthing that i take becomes toxic in my system after a few days of taking even minute doses. once i start to react, my t cells kick up and believe that anything in my body that isnt normally there is an invading enemy and attacks it. so......they tried to treat the b12 deficiency with b12 supplimentation. thinking it is a substance made by the body, my t cells would be ok with it. well...they were not. now i am reacting and my body is turning against even the smallest amounts of b12 in the food that i eat. i am scheduled to see a dr in oregon at the end of july. from what we have been told, he is internationally known for medication mediated reactions/allergies. he is supposed to be one of the best in the country. With Gods help, i will make it to see him and the Lord will work through him to help me. i am so sorry that i vomited my fear all over everyone one on the forum last night. its just a very terrifying time for me right now and i really need to talk about it with people who know, at least partially, what im going through. unless you have experienced the pain, swelling, and inability to breathe you just dont understand. and when i tell others who have experienced this that i cant take anything for it and i just have to pray that God will get me through it, they understand how horrifying that concept is. thank you again for listening to me and giving me a shoulder to cry on. God bless you so much.
Posted 7/1/2013 1:43 AM (GMT 0)
I wonder if you'd be able to tolerate hydroxy-B12 or methyl-B12 instead... Cyano-B12 is the commonly prescribed type of B12, and it is also used to fortify foods. But this form requires conversion to methyl or hydroxy B12, which may involve the CYP enzymes in the liver.

So you need to find things that are already converted to the downstream form, so to avoid the need to utilize the CYP enzymes.

Also, sometimes supplements & medications administered via skin, injection, or nasally will bypass the liver. You need a biochemistry trained super smart doctor who knows how supplements and meds are metabolized to assist you with this. I hope and pray the Dr. in Oregon can help you.
Posted 7/1/2013 2:11 AM (GMT 0)
Hi razzle. you are right. we have tried every route hoping that it was the WAY the meds were being metabolized to no avail. vaginally was the worst only second to orally. we tried injection and nasal administration also. were my liver is omitted i still have the problems with the t cell attack. its insane. we were hoping that injecting the b12 would have worked since it bypasses the liver all together when metabolized and goes directly to the cells. unfortunately, what is not excreted is stored in the liver and mine wasnt having that either. its been pretty horrible. im pretty sick tonight. my stomach is really sick and my head is pounding. my guts are rumbling like someone is setting fireworks off in them but so far....no diarrhea! praise God!!
Posted 7/1/2013 2:30 AM (GMT 0)
razzle, i think i remember you. i used to help out in the hiv forum here some years back. i had some bad times healthwise and had to leave the forums. this is the first time ive been back in years. healingwell was the first place i thought of when i couldnt find a chat for people in my precarious situation. its been so long since ive been here that i couldnt remember my previous user name so i had to re-sign up under a different username. i want to say that i might have used cornchip but i truly cant remember. i was here when the "john's" were on the hiv forum. i heard from one of them about 2 years ago but havent heard from him since. i use a lot of "sweeties" and "God love yous" when i talk to people. i was a premed major at the time. is it possible that you might remember me?
Posted 7/1/2013 3:41 AM (GMT 0)
Is it something in your bloodstream causing this, just wondering maybe a blood type transplant, or where they take your blood and purify it and then put it back into you, thus maybe ending your allergies...
Since they did everything to bypass your liver and stomach, might be bloodstem allergies...maybe IGE infusions...Sorry about rambling...Sure hope this new doctor can help you out and give you hope...hang in there and keep hope and faith...Again many well wishes and prayers. and maybe try calling this new doctor and see if you can get on his cancellation list...keep us posted on that, wish I could give you better advise...
Posted 7/1/2013 8:34 AM (GMT 0)
iWantToLive, I'm so sorry that you're going through all this!

Why don't you ask your doctor about drinking an elemental diet? It would involve drinking a predigested shake that would be absorbed into your bloodstream within 20 minutes of consuming it, giving most of your digestive tract a much needed rest. The shake apparently contains no food allergens.

For more information, go to: http://www.medscape.com/viewarticle/731955_6

Although I'm afraid this probably will not be an option for you, considering the complexity of your situation.

I really hope you get better!

Hugs, Jasmine

Posted 7/1/2013 5:17 PM (GMT 0)
Thank You iWantToLive for the Awesome background information, I am glad you vomited the fear you are experiencing so that it can be defeated and so you can move on to contribute to life in some dynamic ways. May I suggest that you explore some natural herbal options as there is much research information available on the internet beginning at PubMed.
Posted 7/2/2013 2:59 AM (GMT 0)
Thinking of you and hope your a bit better today...Prayers...
Posted 7/3/2013 12:30 AM (GMT 0)
Hi iWantToLive
I may be mistaken but your symptoms are a lot like mine and I have a sulfite sensitivity which is am lacking the enzyme sulfite oxidate in the body which helps to convert the sulfites from foods to safe sulfates.
It came to a point where I could not take any medications at all and I needed the high blood pressure medication as my blood pressure was all over the place.
I had to find a Pharmacist who could compound the medication with no additives or fillers or preservatives.
Seems you may have the reactions to this also, all take out food has preservatives (Sulfites)

The forum '[email protected]' is where you should ask for help. The friends there are awesome, they are presently helping me with this as its become overwhelming and if this is what you have, then you must not eat out until you know what is safe for you to have.

Try this forum, hope to see you there, I am there as well. You will have to register, its easy ok.
Let me know and I will pray for you that you get to the bottom, you must keep your hopes up at all times, do the best you can for you and do not ignore your body when its giving you signs of something.

Yash :)
Posted 7/3/2013 1:26 AM (GMT 0)
Great thinking Yash, I agree with that it could be sulfa allergy...Hope your doing better each day...
Posted 7/3/2013 2:01 PM (GMT 0)
This is beyond just a sulfite allergy/intolerance. The CYP enzymes in the liver process just about everything, and this enzyme pathway is way before sulfite processing occurs...
Posted 8/1/2013 10:58 PM (GMT 0)
I have a friend on Facebook who has the same symptoms as you. She finally was diagnosed with a mast cell disorder. She drinks those special shakes the poster was talking about. Are you near a larger city where you could get a definitive diagnosis?
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