Mast Cell Activation Syndrome / Disease Doctors

[Cort]

Cort submitted a new resource:

Mast Cell Activation Syndrome / Disease Doctors - Doctors with expertise in MCAS

Dr. Afrin's website has a listing for MCAS knowledgeable practitioners; see "The Doctors" tab on the main menu. Dr. Afrin practices in Minnesota and South Carolina. Check out his Forums for more information on the doctors listed.

Dr. Andrew White is not listed in that directory but he recently published a piece on MCAS and POTS called...

Read more about this resource...

 

[Veet]

I'm not sure if he sees patients, but he's certainly the patients' friend, w/ many papers and vids.

T. C. Theoharides, MS, PhD, MD, FAAAAI mastcellmaster.com

 

[Cort]

I'm not sure if he sees patients, but he's certainly the patients' friend, w/ many papers and vids.

T. C. Theoharides, MS, PhD, MD, FAAAAI mastcellmaster.com

I just don't know if he see's patients. I looked at his website and couldn't find evidence that he did which is kind of a shame because he's done so much.

 

[minimus]

I contacted the joint practice of Dr. Dempsey and Dr. Afrin and got the following response:

Dr. Dempsey currently has a waiting list and specializes in MCAS as well as other diseases such as Lyme, immunodeficiences, gastrointestinal illnesses, and more. Dr. Afrin specializes in MCAS and diagnoses for only this. He will provide a long report with treatment plans that will be given to you and your treating physicians at home. Dr. Afrin has appointments available starting in March of next year.

Our office is an out of network practice; therefore, we do not participate with any insurance companies. If your insurance has out of network benefits, then you may get reimbursed on your visits depending on the plan you have. We will provide you with an insurance claim form for you to submit to your insurance company.

The office fees are as follows:
Initial consultation: $2,000 (2 hours)
Initial follow-up: $2,000 (2 hours)
Follow-up (1 hour): $650
Lab fees are not included

These doctors are quite expensive, even if you are lucky enough to have great health insurance.

Has anyone with CFS/ME seen either of these doctors? If so, did they help?

 

[Remy]

These doctors are quite expensive, even if you are lucky enough to have great health insurance.

It's true. I was beyond disappointed that he left his practice at the University of MN, where one could bill insurance, to set up this kind of concierge practice that is unaffordable for all but the richest of patients.

His response to the criticism was simply that he deserved to be paid for his work, but I doubt that he was working for MN for free. I don't have a lot of respect for any professionals that don't make room for the less privileged among us in their schedule. Granted, he does give a lot away through writing, but it's not the same.

Also, I got banned from a mast cell FB group run by his book publisher for expressing my disappointment. Apparently some people (cough Afrin cough) are only comfortable being fawned over.

 

[minimus]

Remy,

I agree...sometimes it seems that some doctors try to cash in on the desperation of their patients. I added myself to the waiting list just to have the option of making an appointment with Dempsey, but am not sure I will follow through. The glamorous, professional photo of her on her website somehow does not instill confidence.

My "allergy" symptoms -- mainly severe allergic sinusitis that leads to horrible brain fog and headaches -- have gotten much worse since I went off Xolair, a monoclonal anti-IgE antibody approved for asthma and hives, about two months ago. I didn't feel anywhere near cured of ME/CFS while I was on Xolair, but I have felt awful since I stopped it two months ago.

I have to do more research, but I don't get the impression that the treatments MCAS specialists like Afrin and Dempsey offer is all that advanced or unique to them (Allegra, doxepin, Zantac, Singulair, supplements like quercetin, maybe ibudilast???) or that the MCAS diagnosis is any better recognized by the "traditional" medical community or by health/disability insurers than ME/CFS is. Is it really worth spending $5,000-$10,000 to see Afrin or Dempsey? I am not sure.

My brother, who has worked in biotech for the last 20 years, recommends that I get back on Xolair or, if possible, try to get on Dupixent, which he says is even more effective than Xolair for mast-cell mediated disease. I have no idea if Afrin or Dempsey use either, probably because these drugs are extremely expensive and hard to get approved by health insurers, but I will inquire with their office manager to find if they prescribe either drug and have success getting insurance authorization to use them.

 

[Remy]

@minimus, I'm not sure if Indianapolis is an option for you, but I saw an MCAS doctor named Tolly Epstein. She was not at all convinced I had MCAS (wish she could have seen me a decade ago when I was reacting to even water) but she still let me do a trial of Xolair and it was covered by my insurance (Medicare). She also had me sign a form for the patient assistance program just in case it was not covered so they are apparently used to working with that option as well.

That said, I don't think she was the best doctor I've ever seen, but she was not terrible either and she certainly believes in MCAS...and takes insurance for her office visits. It might be an option?

 

[minimus]

@Remy, thanks for the recommendation. Unfortunately, I don't think I could get to Indianapolis. I will wait to hear from Dempsey's office and decide then whether I want to spend a small fortune on her or not.

In the meantime I will be looking around for allergists/immunologists who are willing to prescribe Xolair somewhat off-label. I don't have asthma, just severe sinusitis and elevated IgE, among other "downstream" problems that have emerged from 20 years of ME/CFS.