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Saw The Immunologist Today! So Excited!


Kris4444
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I had an appointment today with an immunologist. It was AMAZING! She knew EXACTLY what was going on with me and firmly believes she can help me! I am so psyched! If I hadn't gone to Mayo I would never have traveled down this road to find her.
I have to say that my photos were VERY helpful and I advise anyone who has flushing and/or hive issues to take pictures and bring them with! They really are worth 1,000 words!

I have a bunch of new meds to start tomorrow. She said I should feel so much better within the next 2 weeks. She did a full allergy panel and I'm allergic to nothing which is great but my body is releasing "massive amounts" of histamine when I exercise or ride in fact she said that I'm leaking histamine all the time.
My mast cells are involved but we don't know to what extent yet. She does not feel that I have the "malignant type" of mast cell disease like mastocytosis but said that the mast cells hold the histamine and that when one releases histamine it bumps into another which releases more and so on. She drew about 12 vials of blood to check the immune system and other issues. She suspects that my vitamin D levels will be very low.

Bad news is she said I really need to move. Living in the midwest is only going to aggravate my condition. Until then we will have to treat with meds and hopefully once things calm down I might be able to wean off of them. Moving isn't possible for the next 8 years or so. All very confusing but also very exciting! I have to carry and epi-pen with me everywhere now since my triggers are so random, hot/cold weather, exercise, certain foods, alcohol and she is concerned that after exercise I have had times where I thought I might pass out.
She said that not only are we dealing with histamine but we are also dealing with leukotriene. My understanding is that is what is causing the inflammation in my various organs but especially the gut which is my biggest problem of all. She feels that her treatment will help with that too.

Oh and with the alcohol she said I should only drink beer or wine brewed/bottled in Europe and only top shelf liquor as they don't contain the sulfites that trigger my episodes. LOL. So now I am even MORE high maintenance!
I have a yeast infection in my mouth, I think from the clonidine so she prescribed meds for that as well as a new nasal spray which works differently than nasonex in the way it sprays so hopefully we can get that fluid out of my mastoid sinuses. It's been trapped there since October!

Next is the geneticist. So happy to be getting answers!!
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Kris,

this is awesome.

I'm so happy to hear you're finally getting some much needed answers.

Isn't it amazing how certain drs can change our lives for good after a ...1 hr appointment, while others ....others are just different.

Keep us in the loop, it sure sounds like you're on the right path!

Alex

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Good going. I thought MCAS was an issue for you. Did she give you GastroCrom? That has been a really good thing for me. Along with Allegra and Zantac and a few other things. I'm also noticing that my new diet is really helping me to sort food triggers out ---much easier then before. I have an epi pen too ----as we never know when there could be a really bad response. As we tend to be allergic to nothing - but, react to everything. It's the oddest thing. There's lots of threads on this forum about MCAD/MCAS that you can look up and read.

Issie

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SOOO happy to hear that you finally got in with a doc who is able to help you and give you some answers. And, you got in during your 30 days of leave time. Hurray! :)

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Great to hear you're getting some answers. Hope it all works out for you. I hadn't considered seeing an immunologist. Well actually my allergist is an immunologist too but from what I could tell he wasn't up on the newest mast cell info.

When I first started taking Zyrtec several times a day it helped my OI but then it stopped helping. I suspect its because I got into eating too many of my known trigger foods tho.

FWIW, I'm allergic to most things on the planet if you look at my skin prick test. I'm not sure what that means in masto world ... tc ... d

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Thanks everyone! The meds she has started me on are:

Xyzal (which is prescription Zyrtec without the additives and at half strength as to not cause constipation)

Singulair (prescription strength)

Qnasal (which is a nasal spray but works like an asthma inhaler, really weird to use at first!)

Vitamin D3 2,000 iu

Difulcan (for the oral thrush issues, what's up with that?)

Epi Pen

After I finish up with the Difulcan she wants me to take a pro-biotic called Florastor to help add good gut flora back into my system. I'm already on a probiotic daily but she wants to add this one for 2 weeks as well.

She wants me to eat yogurt every day too. I am to avoid NSAIDS and she wants me to exercise differently since exercise is such a big trigger she says that I need to start slowly, build gradually and then end slowly with a long cool down session, I am never to just STOP. Also, when I go outside and have to deal with changes in temperature I am to sit on the porch (or wherever) for a few minutes before doing anything at all, same before I go in the house after being outside. Sit, get the heart rate down then go in and peel one layer at a time off. Not sure this will work but it's worth a try.

I am really hoping that she is right with all of this! My therapist has me learning about the Law of Attraction which says whatever we put out there comes back to you 10 fold so if you throw out negativity you get smacked back with it 10x's! So I'm thinking positive! This is gonna work!!!

Thanks so much for all the encouragement! If it wasn't for this site and all of you I wouldn't have even known about an immunologist.

Special thanks to Katybug for really stressing that this is what I need to do! You were right my friend!! Thank you!!

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Kriss444- "Bad news is she said I really need to move. Living in the midwest is only going to aggravate my condition. Until then we will have to treat with meds and hopefully once things calm down I might be able to wean off of them."

I was told moving to a colder climate would help as well (Floridian born and raised) but they didn't presume tell me I needed to move. Not long afterwards my husband's job took us to DC and I did notice an improvement but I hate the cold! Still, I can be in a store and feel dizzy, foggy, nauseous and when the cold air hits my face it improves. Far from a "cure" though so try not to feel bad about uprooting everything for a 'maybe' help.

I am glad you are happy with the way things are progressing. :) It's nice when we get good/uplifting news.

Did she say why no NSAIDS?

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Well we can't move anyway so I will have to learn how to deal with the symptoms with meds.

She said NSAIDS are known triggers for people like me. She said to avoid them like the plague. Not sure why. I can ask her at my next visit.

Thank you. It is great when you find a doctor who gets it! :-)

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Hello,

It is great that you have found someone that will be able to really. REALLY help you. :) You mentioned realeaseing large amounts of histamine when you exercise or ride. Did you mean ride as in a car ride?? I am asking because I seem to get very symptomatic when I try to go somewhere and it seems like the motion of riding in a car is part of my problem..or something with my vision and looking out of a moving vehicle..not certain. In any case , just wondered if this is what you meant?

Angelloz

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Hello,

It is great that you have found someone that will be able to really. REALLY help you. :) You mentioned realeasing large amounts of histamine when you exercise or ride. Did you mean ride as in a car ride?? I am asking because I seem to get very symptomatic when I try to go somewhere and it seems like the motion of riding in a car is part of my problem..or something with my vision and looking out of a moving vehicle..not certain. In any case , just wondered if this is what you meant?

Angelloz

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Angelloz,

I have a horse that I ride (used to be my profession before I got sick). When I ride I get very flushed and get vertigo when I get down.

I haven't had issues in the car like you do but I have heard others mention it here. Maybe start a new topic and see what others do for relief. Good luck!

-Kris

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Great news Kris!

This has been a journey, and you finally have a doctor who is working with you and for you.

Congrats. I remember you were on a deadline. Does this mean you'll be able to go back to work on schedule?

One of the things I miss most is riding! Hope you can continue to do so for a long, long time. I didn't have to stop because of hyper pots, but because of another illness.

Keep us posted on your progress.

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It's encouraging that these new doctors are taking a keen interest in you and are doing further tests.

The only new type of med seems to be the Singulair. It will be nice if it works; you would know more about the mechanism of what is wrong and have an easy treatment all in one.

Thrush would probably be due to a steroid nasal spray as opposed to Clonidine; but it sounds like you need the spray and will have to just treat the thrush.

Here is an urticaria treatment you might want to think about or ask about if the antihistamines and leukotriene inhibitor aren't helping enough (some of the tests you are now getting might shed some light on whether this kind of med will work for you):

http://www.nejm.org/doi/full/10.1056/NEJMoa1215372

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3551415/

(you might want to read the second one carefully (more carefully than I did, :) ) and see what you think you might have and what meds you think might work).

These doctors sound nice and helpful but as soon as you can, do still try to get a very concise "name" and full description for whatever condition or conditions you may have because you have needed it and may need it again for when you become symptomatic and can't work.

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