I do have dertmagraphia, how does yours bother you? For me I just get red very easily and some swelling but compared to everything else it isnt much. You cant even have lean chicken breast? Have you tried non-fortified white rice? I react to every rice I've tried but this one: https://www.walmart.com/ip/Super-Lucky-Elephant-Jasmine-Thai-Hom-Mali-Rice-5-lb/24689309Very interesting thread. I am very curious to know if either of you have dermatographia ? @Gingergrrl you said IVIg put the MCAS into remission, how was the MCAS diagnosed and what were your symptoms ? I have zero safe foods and can no longer tolerate the meds I took for 18 years for Hashimotos, I have dermatographia all day and night, I can't touch anything, my own hand on my arm
or hip, causes hives and wakes me up repeatedly . How severe was the MCAS ?
Do you have elevated IgE levels?
I do a quick sniff or touch would set me off terribly. But with steroids and some other drugs I'm a little less sensitive to it right now but I still stay as far away as possible. I can't even use soap when I shower.Do either of you had or have severe chemical sensitivity ? The mint on floss makes me sneeze , if someone is chewing mint gum I sneeze , the smell of shampoo, soap , any chemical , makes me cough , mucus and feel like a just got the flu and I used to smell markers and perfume and candles , I had zero chemical sensitivity so I don't know what this even is happening.
What dose of the IVIG did you have? Steroids and the other drugs Im on help me tolerate the low-dose (30g) IVIG I get. Did you take benadryl or any steroids as pre-medication before the infusion? Thats what many do to prevent reactions. If you didnt I would consider doing that before your next infusion. It sounds more like your reaction may have been a large part a reaction to the bug bites. Sedimentation rate is how much inflammation you have and yours is quite high.I had my first round of IVIg . I got extremely sick . My throat was so painful I ate a lot of cough drops which made me sick. Mucus was pouring out of me. I felt very hot but no fever . I was shaking I was so cold . I got 18 very large swollen, itchy mounds and I have no idea it bugs attacked me over 3 days or if it was the IVIg . They are much less itchy and the swelling went down but they left purple marks behind . I'm
Not sure how this works . If we can't tolerate smells , food or basic medicine , how is a medication with so many donors , even remotely a good idea? I became violently ill, I ended up in the ER and they wanted to do a spinal tap
And I refused . My sedimentation rate was 89, I don't even know what that means , no one explains anything, they just said "an immune response ". Ok, how illuminating .
We have too much stomach acid. Histamine promotes production of stomach acid. The ear stuff is also an allergy symptom.The mental confusion is unbearable . The stiff neck and head pain . The nerve pain is torture . Loose stool, every single day. Do we have too much stomach acid or too little ? Today I was told I have "severe asthma" and sleep apnea. I don't understand any of this. Why do I have constant tinnitus and when I turn my head I hear whoosh whoosh , every time ? I'm
So tired I can't believe what a loser I've become . I can't even focus to order shampoo online . It's like never ending tasks that are beyond me but I think I've done them . I freeze up
A lot . I don't have the energy to argue with liars which are mainly the staff in dr's offices , the latest trying to make me pay fully for iron infusions . Does iron become a problem for others ? I have no idea where it's going .
Same here I feel like I've become loser, life used to be so easy before this, whatever I put my focus on I would excel in quickly. Now I feel like I have Alzheimers all the time. I'm sure the staff arent liars, I get paranoid like that too, the excess inflammation promotes a lot of unfounded negative thoughts. I get the same thoughts too but I try to analyze them and not get caught up in them.
Are you anemic/ iron-deficient? If you are that could be one of the reasons for your fatigue. Iron is not a problem for me
Do you have POTS? If I were you I would consider looking for another doc and, if you havent, maybe a hem-onc.As for tilt table , a cardiologist I think is the best person to do the test . I was positive for antiphospholipid , no one said that was a problem .
I've been on Xoliar for almost 15 months. Worked great in the beginning until I started reacting to it. When I react to drugs my body kills the drug and it has no effect on me. Steroids and other immunosuppressant sometimes help in making xolair work for me sometimes. Xolair with IVIG is fine, I do both. If I were you I would try really hard to get on Xolair as I think it will help you a lot.Has a anyone tried xolair ? Is it ok to do
This with IVIg ? I was told to do it by 2 dr's and one said don't . Can someone explain why dr's keep trying to give me steroids when I'm already immune suppressed ? I thought IVIg was to boost the immune system , how can this be good to mix with steroids ? They did push solu medrol day 2 of IVIg since things were not going well but since then , the internist and pulmonologist are trying to get me to take steroids . Anyone get crushing head pain from IVIg ? I mean really bad , like you want to die head pain ?
Your immune system is hyperactive in one regard and under-active in another. Steroids would help with over-activity. Do you have primary immunodefeciency? IVIG is immune boosting especially if youre immunodefcient but its suppose to help the MCAS because it is immunomodulary. If I were you I would listen to your doctors and take the steroids as they say, especially before the IVIG. I do get some minor headaches from the IVIG but my pre-meds help me quite a bit, my last infusion went pretty well.
I get an slight anti-drug vibe from you. To get better you have to start embracing drugs. If youre not able to understand why a certain drug is recommended because your symptoms are wreaking havoc on your brain then I say you should learn to trust your doctors more and do what they say. And if you cant trust your current one then find a doc you can trust, I agree this is torture. But I wont, and you shouldnt, quit till every avenue is explored. I suggest finding distractions if you havent. Books, tv shows, youtube, movies anything.I'm mot sure how this remotely is living . There doesn't seem to be a point anymore to what I'm doing , it's like torture for the hope I get to live yet I just worsen and suffer . Makes no sense .
Tell the nurse the perfume bothers your symtoms and she wont wear it next time. So you did high dose IVIG? What was the dosage and over how many days was it done and did you do the entire dosage or did you stop in the middle? My nurse was telling me the opposite that she has many patients that got better of whatever condition they had with high dose IVIG and I've read tons of studies where high dose IVIG helped with autoimmunes and MCAS.IVIg is not all that great , maybe high dose is not such a good idea . The very nice nurse choked me with her gross perfume and let me know she has never seen anyone get better from IVIg so that was delightful, I really wonder who had certain MCAS and how was that determined and by who.
I'm also curious if either you have biopsy confirmed small fiber neuropathy or if either of you had intense black mold exposure
Thanks
Have not had biopsy for small fiber neuropathy, have you?, I did get a bone marrow biopsy and was negative for mastocystosis. As far as I'm aware Ive not had black mold or any kind of mold exposure.
Last edited: