I think Debbie said it best..these doctors are so overloaded with patients it's unreal. Some days they are very available and some days/weeks they simply are not. Dr. Castells runs her own lab and teaches as well. Dr. Afrin has many commitments to the U of SC as well. Unfortunately seeing patients is certainly not the only thing they have to do.
I am having quite severe brain fog right now so I hope this makes sense. If it doesn't, please ask me specific questions. OK? I will try and give you my opinion at least.
Since I see both Dr. Afrin and Dr. Castells on a regular basis (long story), I hope I am qualified to answer some questions. So here goes.......
Dr. Afrin will take new patients and you can go back as often as you need to (if he gives you an MCAS diagnosis or if you continue to be very symptomatic and have proof you need to see him again)...but because we can react so severely to new medications and any and every thing else on the face of this earth, he feels it is ethically wrong to prescribe us medications because he can not moderate our condition. He HAS to rely on physicians that will help us locally when we have immediate care needs. He obviously can not examine us when we are so far away and we need an immediate assessment when we are in crisis or seriously ill. He will see you and help you in any and every way he possibly can. For example, My local GI doctor felt I needed a colonoscopy. I reacted severely to the prep and ended up in the hospital. I had my GI doctor contact Dr. AFrin. Dr. Afrin questioned why the procedure was being done in the first place (as did I) and basically told my GI doc that the risk of the procedure for me was too great for the condition my GI doc was concerned about. I was grateful as I believe that anesthesia (even though not a general anesthesia) could have caused even more damage to my already fragile state than not having the procedure at all. I was grateful for Dr. AFrin's explanation to my GI doc. Now, he is even MORE careful when treating me. With all the "rejection" we experience, it's good to know someone really "gets it" and will give his support.
I feel Dr. Afrin has an excellent perception of what some of us (who are constantly reacting) deal with on a daily basis. He is very aware of checking for dyes in meds, fillers, etc. He may try different approaches and may not be the typical conventional doctor at times, but he always has your best interest at heart. He is very passionate about helping MCAS patients but he also feels very strongly that this disorder is epidemic and other doctors need to be aware that MCAS exists.....therefore he wants us to try and get someone locally to help us so he can share as much information as possible with them. IMO he is a brilliant doctor.
Dr. Castells is amazing. I was given an appointment with her after a local doctor referred me to Dr. Greenberger (who is a colleague of Dr. Castells) after a long hospital stay last year. It was Dr. G who wanted me to see Dr. Castells right away. I have seen her 3 times in the last 6 months and have another appointment in the fall. Because I no longer can take ANY antibiotics, Dr. Castells main focus for me right now is to find a way for me to be 'covered' before I get sick. I spent 6 hours at the clinic last week. She tested me for everything she could think (IgE) of and then did a penicillin "challenge". I have no food allergies, passed the penicillin skin prick but had a slight reaction to the "mini" sub-Q injection. We talked at length about taking a tablet to see what would happen. I knew I was in the best hands possible so I opted to take the challenge. I asked if I could just take 1/4 of the tablet. She respected my request and we agreed to go ahead. I made it through the first 18 minutes and then my vision got blurry and I passed out cold (yes, in the waiting room in front of everyone). Not only was my assigned nurse there in an instant, but Dr. Castells was also there and she also called the ER doc too. She needed to see what kind of reaction I had so she could help me understand what to do. (I know Dr. Afrin does these things with his local patients, but I do not believe he does with his distance patients....as we could have a delayed reaction while traveling home.) After I recovered, she came in and talked to me, had me drink lots of water and I slept for a bit. When I got up, she had me come to her office. She spent almost an hour explaining what had happened, the difference between an anaphylatic reaction and what some call an anaphylactoid reaction. She explained that my body wasn't "allergic" to penicillin, but it could not metabolize it properly. I possibly don't have the enzymes to break it down or they are defective so my body just shuts down. Why is this important...because I don't need epi when I have this type of reaction! Very critical information!
She sat and explained how and when to add new foods and told me just how much and how often I could "challenge" my body with new things. She did add Ketotifen to my med regiment and did write the prescription. My husband came into the followup consult with me and was blown away at her knowledge and advice. It was an extremely productive visit. I am to return and try the same thing with a pre-med protocol and see if I can tolerate the penicillin that way. Then she will write an individualized protocol for me to have on file at the hospital (and one to carry with me) so I will hopefully never have to experience what I did last year again.
So....to sum up, Dr Afrin will see you as often as you feel you need to see him but will not be responsible for any emergency care you may need when you are at home. He will work tirelessly with any physician on your behalf who is willing to seek his advice.
Dr. Castells will see you as often as she feels you need to be seen and will write a prescription if there is something you need. (You can request refills at Brigham via "My Chart" so that alleviates having to contact the physician and "bother them").
She is more difficult to get an appointment with and in my experience if you do not return for her to "complete" what she feels you need to have done, you can very easily "fall through the cracks". She must have several hundred patients so it's really important to follow her instructions to get the complete help you need. Also, she CAN be contacted in an emergency. Her staff has her cell no. at all times so if you are in trouble she can be contacted and she will answer!
I have personally emailed both of them, but like Debbie, only when absolutely necessary. Once with Dr. Castells and she responded within a couple days. Several times with Dr. Afrin and as many of you know, you usually get a responce within 24 hours...along with a LONG "lesson" of things we need to hear.
He prefers to email through a local doctor but will still help you if you haven't found a local doctor yet.
They are both great in their realm. But as Deb said, "Dr. Castells is the expert". And yet like Dr. Afrin, she will throw up her hands and say, "we just don't know that yet!!"
I like having both because I am a high risk cancer survivor and Dr. Afrin is an oncologist.....but Dr. Castells knows MCAS inside out and her research is amazing! (did you know she cloned a gene??) WOW!! She also desensitizes cancer patients when they can't tolerate their chemo treatments!
Sorry for the long answer....but I hope it personalizes things and helps you made a well informed decision.
If you have any questions I missed, please ask. I wish you the best....and hope you will be able to see the best doctor for YOU.
Hugs, Lynda
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