Connect
Mast Cell Activation Syndrome or Histamine Intolerance
I will try to keep this short, but does anyone know of a doctor specializing in MCAS or histamine intolerance in the Chicago or northwest Indiana area who accepts insurance? I’m suffering through another sleepless night with painful hives on the soles of my feet and ankles (although they appear everywhere and move around). My whole body is so swollen I’m stuffing myself into clothes. And now I have developed gastrointestinal issues, too. Electrophysiologist says autoimmune issue could be causing tachycardia, He referred me to a local allergist yesterday, but they can’t see me until April 2025! I can’t suffer that long. I hope to order my own blood panel tomorrow as a start, so I won’t take allergy drugs or steroids right now. Also, please bear with me as far as my online responses. I’m holding down 4 jobs to stay afloat, but I do read posts. Thanks in advance!
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
May I ask how long you gave up eating gluten and dairy? Try it for at least 6-7 months so your body can really adjust. I also have a histamine intolerance and the group of foods called Nightshades are the culprit for me.
-
Like -
Helpful -
Hug
2 ReactionsI would suggest you see General internal med at a larger facility and let them coordinate your care and referrals to specialists based on your symptoms and test results. That is usually the easiest most organized way to work through a tough diagnosis. Not family med but internal medicine.
Chicago has plenty of larger good facilities. Northwestern, U of I, Rush etc.. Stick with one of those. Get a referral for Internal med from your current provider if you need one and get an appt made.
This may not be mast cell at all. Without medical history Id be hesitant to suggest anything else.
If the reaction gets worse or interferes with your breathing , go to the ER.
-
Like -
Helpful -
Hug
2 Reactions@md11 I started on Xolair 525 mg injectables every two weeks and it has helped. But it makes me so tired. Not sure my new insurance is going to cover Xolair starting January 1 🤦♀️. I can’t get a straight answer from them.🤦♀️🤦♀️
@fessenbeck65
I have been taking 300mg every 4 weeks. I started taking Low Dose Naltrexone, titering up to 6 mg daily. It dramatically helped with the fatigue. Unfortunately no insurance that I know of will cover it since it must be compounded. It costs around $100 for a 90 day supply. Good luck. Stay strong.
@md11 thank you so much for letting me know what they’re doing to help with your fatigue. I think it might help my fatigue if I do the Xolair 525 mg injectables every three weeks, instead of every 2 weeks, But not sure. I hope you continue to make improvements 🙏
I will look into Naltrexone.
Thanks again