Here is my take on it:

It seems as if your new doc is really trying to help you and put forth more effort than most of us see from our general doctors. However, like any other general doctor, he is only willing to do so much -- and that does not mean becoming an expert on mast cell disease. I actually had that one in a million doctor years ago when I began my search for what was wrong with me. My doc was an internal medicine doctor, and he spent tons of time trying to help me. Had me known it was mast cell disease, he would have become that expert himself just to help me, his one patient with it. (Sadly, he died of Hodgekin's Disease.)

Most doctors are not like my old internist, however. My very good friend is my current doctor. She and I grew up together and she was in my wedding. Yet, even she has no interest in learning anything about my mast cell disease to help treat me. She tells me to just check with Dr. Akin, who is the person who diagnosed me. So, it sounds that your doctor is at least trying things with you and taking an interest. I know it doesn't sound like much, but it is better than to be expected.

Now, as to Dr. Afrin and your medication. I guess I am still not sold on how great this doctor is. Perhaps if I had personal experience with him or heard that he had actually helped someone with mast cell disease, then my opinion would not be so skeptical. However, I keep hearing that he is so passionate and kind....and yet I haven't heard anyone say that they are doing better after going to him.

You said that you were originally taking zyrtec, allegra, and xantac. Those are the standard meds that people start on, and very good choices. You didn't mention to what extent they helped you. So I would be curious to know that. For some reason, Dr. Afrin switched you off of those and has you now taking only Claritin and Pepsid. This sounds crazy to me. Those don't work nearly as well. So, unless you failed to mention that the original meds were giving you bad side effects, it isn't logical to switch to Pepsid and Claritin.

Now, I want to remind you that even Dr. Castells and Dr. Akin will tell you that finding the proper meds that work for YOU is a matter of trial and error. It is important to remember that with our disease, the doctors are our guides, but we need to help them figure out what meds work for us and then we need to make our own decision regarding how much of their advice to follow. If the Zyrtec, Allegra, and Zantac worked better for you, then you should switch back to those.

I am sorry to say that I don't remember the reason that you are seeing Dr. Afrin rather than travelling to Boston to see one of the real mast cell specialists. Unless you have been turned down an appointment with one of them, I would recommend that you go out there and seek their help.

I am not sure how much weight my opinion carries, but I can assure you that while I may not offer the medical specifics of my moderators, I do know how to help people get much better. After years of experience with doing so, and changing my own life dramatically for the better, I feel very passionate about helping people whom I think are headed down the wrong path. I can't say for sure if you are one of those, but I think that your local doc may be of assistance to you as long as you guide him in the right direction. My one concern is that he is an oncologist. We don't generally see oncologists for mast cell disease. You could either stick with him or see if you could find a good internal medicine doctor. They are more specialized than the regular GP docs, so you might have success there. I would change back to your old meds if you didn'tr have problems with them, and I would go to Boston and see one of the Boston docs.

Just my opinion, but I think it might help you to a quicker positive response.

Hi Kim,

I am sorry you are struggling.  I just want to say a couple of things.

First of all, the reason Dr. Afrin told me that he starts his patients on Claritin and Pepcid is that THEY ARE THE TWO MEDS THAT PHARMACHOLOGISTS KNOW HAVE VERY LITTLE IF ANY INTERACTIONS WITH OTHER MEDICATIONS.  I think in trying to find out if any of your symptoms are NOT mast cell related, it is important to rule out interactions with other medications.  Heaven only knows how many "regular" meds we react to!  I don't know what else you take as far as "your daily non-mast cell meds" but I know my medications can play a role in my flares...right down to the dyes in them and the fillers.  That was the reason Dr. Afrin told me he wanted me to start with the Pepcid and Claritin.  Although each of us will continue to question any doctor and what they do (because we have been disappointed soooo many times), we have to start somewhere.  I know Dr. Afrin has written, "Each person is different and you have to find the right combination for your own body".  He gives us the recommendations and we TRY them.  He explained to me that if these H1 H2 blockers are not working, "then increase the dose or the frequency.  If the increase does not improve your symptoms in 4-5 days, then back off to the previous dose."  That will be the best benefit you will get from that particular blocker.  Then, if you still are having symptoms, you add the next blocker and do the same thing. If these two H1,H2 blockers are NOT working, he would be the first to tell you to add another blocker. But be sure you have increased them to the limitations he has suggested.  Does that make sense?

I don't pretend to know a lot. I am so new at this.  I do however, email him whenever I have a question or inconsistency and he will always take the time to answer and "teach" me more about what I am dealing with.  I would go straight to him with any questions you have.

As far as our "local" doctors.  Right now I can't get re-tested because I don't have a "complete diagnosis" (my heparin level was very high) but all my other specimens were lost in transit.  So.....my local doc needs a diagnosis so he can treat me and Dr. Afrin can't order tests at a clinic where he doesn't have the authority to do so.  So I am not able to do a thing until I can get a consultation.  Maybe I am more aware of all of the legal implications of treating us "out of state", in "other medical facilities", etc. (my daughter is an attorney) but trust me, there is A LOT THAT IS NOT YET ESTABLISHED when it comes to "sharing" responsibility for our care.  One doc can not treat what he doesn't know....he still is liable!  So...your local doc HAS to understand everything he is doing before he can do anything.  That is the situation I find myself in.  We have no choice other than to let the doctors, clinic attorneys, clinic advisory boards, etc. work all of this out for us.  And UNFORTUNATELY THAT TAKES TIME!

Are we frustrated?  YES!   Last week I decided I could be 1) angry or 2) determined.  I chose determined.  I don't want my son or daughter or niece or anyone else have to go through all of this.

In thinking about the past and knowing what I do now, I want to share this with all of you.  When I finished my eight rounds of chemo seven years ago, I was given a bottle of "imitation champagne" and a pat on the back...well done! I was a model patient even though I was one of the sickest patients the nurses had ever seen.  So, I went home after having the support of a WHOLE STAFF OF PROFESSIONALS for months, to having NO ONE!  When I went back for my next check up (after completely falling apart) I told my oncologist....what are all of you thinking?  You are deserting us at a time when we need you the most (will the cancer come back, oh no, I feel pain in my leg....you get the idea).  So.........I met with my doc and a cancer rep. and a triage nurse.  To make a long story short there is a huge state wide post-cancer support group called W.I.N.G.S. (We Inspire Nurture Give Support) for EVERYTHING you could possibly need.  (I told my onc  it was because I complained the loudest).     HE took the "ball" and ran with it.  AND THAT IS WHAT WE NEED TO DO! Who would have ever guessed????

(Enough rambling..........I don't write so well after midnight....)

Hang in there Kim.  The answers will come and you DO need to follow your instincts and care for yourself in a way you know works for you.  I think you gave what was recommended to you a chance and it sounds like you feel that it isn't working.  Contact Dr. Afrin and tell him that.  OK?

I hope I am not sounding condescending...that is not my intent.  We ALL have to support and work together to get this figured out! Even the experts don't have it all figured out!

Besides, stress means ONE BIG NASTY flare!!  

Keep us posted on what you decide and let us know how you are feeling, OK?

Hugs to you, Lynda

I totally get the "disappointed" vs. stressed out thing.  I think I was really referring to MYSELF when I stated that being stressed goes hand in hand with a "flare"....  Last week I was super stressed out and nothing was working out.  I had to take a step back and re-evaluate my own attitude.  I didn't mean to imply that you were stressed and if it felt that way, I do apologize.

I think your patience in waiting another month for your local doc to get on board is really a reasonable time frame.  Yes, they are busy. But at the same time he did agree to help you and he must do his part so you can feel better!

Honestly Kim, in my own opinion I don't understand (except for the interaction thing) why doc Afrin wouldn't keep you on what was working for you!  Maybe he had hopes that the less interactive meds would be as helpful to you. Obviously they are not.  I am glad you are going to email him.  If I were you I would just flat out ask him why he chose to put you on the Claritin/Pepcid combo and not leave you on what was controlling your symptoms.  And I am certainly not a doc but if I understand all of the mast cell "stuff," isn't our main goal to keep our symptoms under control?  hummmmmm

I think everyone on this site feels like you do when it comes to having to "do all the leg work".....I know I had expectations that that would resolve itself once I saw a mast cell specialist...and when it didn't happen, I too became very disappointed.  It is VERY hard to be so sick and have to figure out everything for yourself as well.  I think we need to give ourselves a pat on the back because we are determined patients!  Otherwise how would we all have traveled hundreds of miles for answers we so desperately need??

Let me know what you find out... if that is ok with  you.

Take care.........I really hope by now that the doxepin is helping!

Hugs to you, Lynda

My family MD in town prescribes gastrocrom. I head to Boston once a year, but he doesn't prescribe anything. I guess I just want to keep being a patient in case things get really bad.