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Deborah's tips! How to choose a doctor; basic beginning medications (Read 6326 times)
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Deborah's tips! How to choose a doctor; basic beginning medications
12/25/10 at 05:54:08
 
Hello! Over the years I have sent out the information below to so many people who have contacted me from across the country to learn about their newly diagnosed mast cell disorder. I have compiled a list of great tips (at least that is what people tell me!) regarding how to help yourself get better. So, here they are:

The first thing to think about is your doctor. Is he one of the few researcher/specialists in the country or simply a local doctor who is trying to help you? Then consider how you were diagnosed. Did your doctor tell you that you might have Idiopathic Anaphylaxis or masto or some other form of mast cell disease? What type of doctor is he? Did that doctor put you on specific meds for that reason? How did that doctor determine that you could have mast cell disease? Did he base it on your symptoms? How knowledgeable do you feel about IA/masto/mast cell disorders -- novice or expert?

Okay, assuming that you don't know too much about mast cell disorders, I will give you some facts. First of all, I pose questions regarding your doctor, because most doctors don't know much about IA/masto (even though some think they do.) The only true care you will get is by becoming a patient of one of the handful of mast cell disease researchers/specialists around the country. (They take people on as patients because they know they can help us. It is not necessary to be part of their research to be a patient.) Being a patient of a researcher is fabulous, because they know exactly how to help you and they don't have too many patients, so it easy to get in with some of them.

For any type of histamine release problem, such as mast cell disease or idiopathic anaphylaxis, it is necessary to be taking prescription dose histamine blocker meds on a daily basis as preventative. There is a world of difference between only taking the meds when needed (ie: when you feel an attack coming on) as opposed to daily and feeling so much unbelievably better. The researchers generally start a masto patient on a basic regime of H1 (zyrtec or allegra) and H2 (zantac) blockers. For example, I was started on 300 mg zantac (twice/day) and 10 mg zyrtec (twice/day). While it helped, it was not good enough. So, we added 10 mg Singulaire (once/day) and we switched the morning zyrtec to 180 mg allegra. For me, this is great. I am one of those success stories that you will find of a person who feels perfectly normal all day, and just a little unwell after I awaken in the morning and late at night when fatigue sets in.

So, you need to consider if you are on the right meds. The ones I mentioned are the standard ones that are tried first. There are stronger meds that the researchers will prescribe if these don't work.

Now, the most important thing you can do is to see a researcher right away and become a patient. The 2 top mast cell disorder doctors  in the US are Dr. Cem Akin, MD., Ph.D. and  Dr. Mariana Castells MD., Ph.D.. Both researchers/specialists have joined together to develop the first Mast Cell Disease Center. They are located in Boston, MA at  Brigham & Young University Hospital. Known for their compassion and knowledge, these doctors are helping mast cell disorder people each day to get better.

My doctor is Dr. Akin, although I don't live in Boston or even on the east coast of the US. It is normal for their patients to travel the country to see them for diagnosis, and then have the local doctor manage day to day medical issues. These doctors are only an email away and are happy to consult with your local doctor and help you as much as they can.

For contact information, feel free to private message me and I can send you their email addresses.
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Re: Deborah's tips! How to choose a doctor; basic beginning medications
Reply #1 - 12/25/10 at 11:02:36
 
(Archived message from lindasimmons - original forum)

Thanks for the great outline, we tried using a local doc recomended by Dr Castells to prevevt the 4 day drive from Fla to boston, but have decided to see Dr Akin who just moved.We are new to this disease, but have others that are major,rare,and complicated and she is only 16.Corn trigger is the worst as it us in everything.Trytase neg.  Food test via blood neg. But continues to trigger; brain fog,HA,bone pain, neck and throat swelling, abd. pain, diarrhea.
Thanks for all you do
Linda in Fla


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Linda in Florida mom for lisa with ehlers-danlos,chiari,POTS I will not give up

28 August 2009 05:30 PM
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Re: Deborah's tips! How to choose a doctor; basic beginning medications
Reply #2 - 12/25/10 at 11:04:21
 
(Archived message from Shelley43 - original forum)

Deborah - thanks for the tips!  Can you share with me your favorite doc?

Thanks,

Shelley


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21 April 2010 02:50 PM
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Re: Deborah's tips! How to choose a doctor; basic beginning medications
Reply #3 - 12/25/10 at 11:05:41
 
(Archived message from original forum)

Hi Shelley,

Who is my favorite doc? Hmmmmm. LOL Well, I am probably biased, because I would have to say my doc, Dr. Cem Akin, I can back it up, though, by saying that everyone I hear from absolutely adores him and thinks that he is both very compassionate and knowledgeable. I have to assume he is one of the best since he is contacted by doctors worldwide for consultation. I feel that he is very cutting edge since he is one of the primary researchers and he really does try to help and consider you a person rather than a number. I feel, though, if I couldn't see him or if he were stumped, that I would feel very happy to see Dr. Castells also. I don't have any experience with her, but I hear she is wonderful also -- very compassionate and knowledgeable. I believe that she spearheaded the MCAD diagnosis when no one else was pushing it (although I think I heard Dr. Akin had taken over researching that. Don't know the details on that.)

Hope this helps!


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21 April 2010 03:06 PM
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Re: Deborah's tips! How to choose a doctor; basic beginning medications
Reply #4 - 12/25/10 at 11:07:25
 
(Archived message from donlansdoe - original forum)

Thanks Deborah I guess I'll be checking out my insurance possibilities, should I be setting up an appointment with an alergist first, I'm still confused and a bit overwhelmed.  Anyhoo lots to read still.  This is a great forum.  Doe

26 May 2010 08:05 PM
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Re: Deborah's tips! How to choose a doctor; basic beginning medications
Reply #5 - 12/25/10 at 11:08:56
 
(Archived message from barb3500 - original forum)

thank you for the web site i have been reserching this for 3yrs on bing.....never found real live people. i am so tired right now i cant even finish this so i wil write more later. i have had all symts and have been to 3 cancer specialist,  2 nuro, arthric, and primary. had a great job but keep throwing up and over heating some parts of my body. if i get a spurt of energy and dont stop to rest and not do so much i start dizzie throwing up. wil tell u alll meds on and more need to rest . i hope between all of us we can make this go away.by the way i lost my job.
thank you again at least now i feel valadated

barb3500

18 September 2010 04:11 PM
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Re: Deborah's tips! How to choose a doctor; basic beginning medications
Reply #6 - 12/25/10 at 11:11:49
 
(Archived message from msauce - original forum)

Thank you for the info.  I was lucky enough (after three previous docs telling me my spots were dry skin) to find a dermo, who did a biopsy.  After diagnosing masto, she knew of an allergist who specializes in Masto - went to Harvard.  The other Allergist in his office went to Duke.... I am very fortunate to live in an area right now where I have the help and the expertise.  Like I said earlier, three previous docs did not know anything about this disease (or whatever) and I was going crazy with these symptoms.  Now, at least I can move forward.

03 December 2010 02:57 PM
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Re: Deborah's tips! How to choose a doctor; basic beginning medications
Reply #7 - 12/25/10 at 11:13:34
 
(Archived message from riverwn2 - original forum)

Glad to meet you msauce! Yes, you do sound like one of the "fortunate" ones--to be diagnosed so quickly, then find excellent smart doctors. Im thrilled to hear that! Many of us struggled for answers for years...getting that answer is such a relief, then you can start making a plan to take control of your life back again ! I look forward to talking to you more Smiley

Hugs,
Ramona

04 December 2010 12:41 PM

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