@Misfit Toy Sorry for my long delay and I just read your thread...
We will fully catch up some day soon.
Right outside of NYC and takes MEDICARE.
She actually tries to help the patient.
That is great news and I have always heard good things about her.
I saw the doctor who she knows in Philly who could help me get it, etc. This doctor told me to go see Anne. I saw her yesterday. The appointment was awful. "This will not help your MCAS. I have never heard of that.
IVIG put my MCAS into complete remission and in July it will be 2 yrs. Most doctors do not even know that MCAS exists let alone "outside of the box" ways to treat it. Although my IVIG was for autoimmunity (not immune deficiency) so I do not know if it would be the same.
@Misfit Toy why does your doctor not believe in MCAS?
Doctors are not taught about MCAS in medical school and most have either never heard of it or think it is a fake disease or of psychological origin. If anything, they know of mastocytosis (too many mast cells/cancer) versus MCAS which is correct number of mast cells but they are "behaving badly".
Can you describe the Pneumovax challenge? do you have to be hospitialized? Does it make you sick?
I did not do the Pneumovax challenge since we were asking for high dose IVIG for autoimmunity and it would not have been relevant. My doctor also felt that vaccines would not be safe for me. But I know people who have done it and you do not have to be hospitalized and mixed outcomes re: if it made them sick. I did not do it.
I did IVIG with two bags of saline, Benadryl in IV and you name it...throat closed up on last time with Gammaguard.
Can you remind me if you have been tested for autoantibodies against IgA? If you have them, this greatly increases your chances of having an allergic reaction to IVIG and would help decide which brand to try (a brand with low IgA content).
I am supposed to take Zyrtec and Zantac before treatment.
I take Atarax, Pepcid, and Tylenol as pre-meds for IVIG but everyone is different.
I follow Lisa Klimas and I honestly think she knows more than most doctors.
She does. Without a shred of doubt, if I need info on an MCAS issue, I look to Lisa Klimas. She is the world expert IMO (along with Afrin) and is not only a severe patient but is a scientist.
Your whole IVIG saga (past and present) made me so bummed for you... then I got to this line and burst out laughing! You really need a twisted sense of humor to get through all this... Did Robert Wagner push Natalie Wood off that boat in Catalina? Or, was it Christopher Walken? Nope! It was the anti-histamines!!
This made me laugh, too. Thank you guys
I had amazing insurance and lost it just as I discovered Dr K, so I couldn't afford to see him.. In the mean time, he's been starting to use IVIG and has experience
He has a lot of experience with IVIG and I trust him completely on this issue.
what are MCAS autoantibodies? I didn't know there were specific AA's for MCAS.
There are no specific autoantibodies for MCAS. There are tests like Histamine, Prostaglandins, Tryptase, etc, but there is no autoantibody test and it remains unproven if it is an autoimmune disease.
She treats my IC and calls me "Little Miss Mast Cell."
Can I call you that now?
There is a theory that getting IGG does help you even after you stop, but not for everyone. After I have IVIG, I didn't have an infection for a year eight months. They feel that sometimes it kicks the immune system to work.
My MCAS doctor said it can re-set the immune system (even after you have stopped it) and I am hoping this will be what happens in my case. My next IVIG is next week (Mon & Tues) and I have now tapered down to a 2-day cycle (from a 3-day cycle).
I am not overly hopeful this time around, I am going to give it a shot regardless.
Good for you and I think it is worth a try.
amazing how your body wants to get back to homeostasis - even if the homeostasis is having an infection.
I agree and I think it is the same with autoimmunity and dysautonomia and I am hoping my treatments will have broken that incorrect homeostasis (but time will tell).
So, still not clear on IGG vs IVIG.. By IGG, do you mean the product that is injected during the IVIG process?
IGG is the type of immunoglobulin and IVIG is the method of administering it (through an IV). Vs. SCIG it is administered SubQ.
Hey
@Learner1 -I don't go to the same doctor as you, nor do I have the money for all of these tests.
I think Learner goes to two doctors (correct me if I am wrong
@Learner1) and one is the same doctor as me but the other is a local naturopath and the microbiome tests that she is mentioning are from her naturopath (and not from our doctor) b/c I have not done any microbiome tests and it is not a focus of my treatment. I did do a SIBO test and a few other tests in 2014 with an integrative gastro doctor (who I only saw briefly) which were negative.