Mast Cell Activation Syndrome or Histamine Intolerance

Posted by pjrockz88 @pjrockz88, Aug 1, 2024

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!

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lkirnbauer | @lkirnbauer | Feb 20, 2025

In reply to @pjrockz88 "Thanks for commenting. I have Graves’ which is now inactive. So I get thyroid panels done..." + (show)

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.

wisfamily | @wisfamily | Feb 20, 2025

I 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.

fessenbeck65 | @fessenbeck65 | Jan 9 9:16pm

In reply to @md11 "Xolair relieved my severe hives and also helped with fatigue. Good luck." + (show)

@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.🤦‍♀️🤦‍♀️

md11 | @md11 | Jan 11 12:39pm

In reply to @fessenbeck65 "@md11 I started on Xolair 525 mg injectables every two weeks and it has helped. But..." + (show)

@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.

fessenbeck65 | @fessenbeck65 | Jan 11 2:18pm

In reply to @md11 "@fessenbeck65 I have been taking 300mg every 4 weeks. I started taking Low Dose Naltrexone, titering..." + (show)

@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

lewin | @lewin | May 27 4:46pm

In reply to @emo "Hi again- It was easier than I thought to got back in my messages and find..." + (show)

@emo
Does anyone know someone in Pittsburgh area who is familiar with MCAS. I can travel. I need someone who is really good---many serious problems. Thank you.

ksprech | @ksprech | May 28 5:18am

In reply to @ggr "My daughter has an allergist in the Alexandria, VA area who treats mast cell activation." + (show)

@ggr I live in Clarksville, Maryland and desperate to find an allergist who helps w MCAS. Can you share the physician’s name? Thanks for any guidance you can provide.

ggr | @ggr | May 28 6:18am

Kaufman Allergy Asthma and Immunology Center, 1945 Old Gallows Rd STE 205, Vienna, VA. 22182. 703 403-5413. She shows Mast Cell under list of conditions with a note "see referral guidelines". The doctor's name is Karen Kaufman. Good luck!

suetex | @suetex | May 29 11:38am

Could you tell me what the syptoms are? In the 50s when I was a child, I was taken to the allergist for migrane headaches. Long story short, I was told that I had a histamine intolerance. Dr. gave me a series of shots of histamine that graduly got stonger. I was wondering.......

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