Mast Cell Specialist in Los Angeles??

Hi all, I have been diagnosed with a mast cell activation disorder. I live in Dallas but spend a lot of time I'm LA and as luck would have it, I am in a flare of my mast cell disorder and my current LA allergist is not very helpful or knowledgable ( haven't decided which yet). He basically thinks I am making my symptoms up since all my lab results are normal with the exception of my tryptase- and those are not above 20.

Anyway, I was hoping that someone had a referral for a doctor in the area that was a mast cell or mastocytosis specialist. Any help would be greatly appreciated!! :)

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Hello...Well, I had mastocytosis for YEARS...lab tests were okay, skin test was not. At one point I was practically bedridden and very ill. My daughters live in Los Angeles and go to a doctor (chiropractor) who uses Eastern Energy techniques to help the body heal itself. Now keep in mind I thought it was all HOOEY. I decided to see her because they were fearful I was going to die (by then I was using a wheelchair). Some doctors were kind, others treated me like I was nuts. One said "This woman WANTS to have a rare disease and since she refuses to see a "shrink" there's nothing we can do for her." THIS COMMENT IS IN MY PERMANENT RECORD. So I figured what the hell, I'll go to this doctor. Our insurance paid for chiropractors. She doesn't accept insurance but gives statements so I could send it in to my company. My husband was all for it saying, "what's money if you're sick all the time?" OKAY...I went and immediately thought, "OH BOY, this is too strange..." she waves her hands around etc...(TMP I think it's called) and told me what to eat and not to eat (gluten is killing you, she said) Low and behold, I went to her several times in a week or two every time I went to Los Angeles. I noticed a difference right away. Before seeing her I had a few good days a month. After seeing her I had a few bad days a month...after four years it kept getting better. A few years ago she told me she was going to do a years worth of treatment in two weeks since I only saw her once or twice a year. I went off gluten. I did everything she said. I am now free of ALL medicine!! My body temperature is normal for the first time in years. Sinuses, asthma, joint pain, headaches...all GONE. You can find "masto" doctors all over the US, but all they do is fill people full of DRUGS without trying to find out what the body is rebelling against. My doctor said she, "Had to convince the mast cells they no longer had to fight for my life...that I was okay.." She's incredibly gifted, funny and BRILLIANT. Her name is Dr. Sai Ling Michael. Here is a link that has some ratings by patients. http://www.yelp.com/biz/michael-chiropractic-north-hollywood
Sai Ling's son is also VERY gifted. All I can say is I went in acting like a narrow minded mid westerner and now think that their way is the only way for me. People from all over the world go to their clinic. I have their phone number too if you'd like me to email it to you just let me know. It is a Chiropractic clinic, but when I first started seeing Sai Ling she said I could not have an adjustment for a long time...that the mast cells would rebel. Anyway, if you decide to see her, tell her Nanci McCune gave you her name. Oh, and here is a link to their website http://www.healthquesthq.com/HealthQuest_HQ/Home.html

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Hi Muppet ,

I am pleased you have found relief from this technique. i wanted to ask has your skin mastocytosis completely gone ? Also have you had a dexa bone density scan or bone marrow biopsy .

Mastocytosis is a lifelong condition with no cure, so i just wanted to check that you are not potentially building up problems but not knowing. Some children grow out of skin only mastocytosis . But systemic mastocytosis is life long. mastocytosis is ahrd to diagnose and treat properly ;-)

Josie

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Hi gn ,

Whats happening hun ? Symptoms wise xx You may need to get to a top speclaist to settle you down and they can find a local speclaist for you xxx Do you have contact details of the best known speclaists ?
huggles
Jose

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HI Josie, Well, I have been stable for 9 months and 2 weeks ago I started this flare while I am away from home in Los Angeles. I have anaphylactic symptoms daily but have not progressed to throat tightening so have not used my epi pen. I have weakness, flushing, chest tightening, lightheadedness, I am reacting to anything I eat, (even my safe foods: pears and rice). I am taking Benadryl 50 mg every 4 hours, and adding an extra Zyrtec in the afternoon to my regular meds:
Zyrtec 20mg twice a day
Zantac 300 mg twice a day
Singulair 10 mg in am
Gastrocrom 200mg four times a day

My Dallas doc did order Prednisone 40 mg x 4 days and then taper off. Yesterday was my last day with taper.

I did have an allergist here in LA but I am firing him. When I emailed him for advice to help stop this flare, he said that he needed to see pics of swelling or hives. I told him that I don't swell or hive hives. The only overt sign I have during an episode is that my hands get red and my nose and sometimes my cheeks and chest. I sent him those pics. I have not received a response in 4 days. That is why I was looking for a LA mast cell referral.

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Hi hun .

For now immediately double you singulair if you have stock and don't taper any further the prednisalone . If you are short on supplies of steroids an ED may be the easiest option right now . Don't be scared of using your epi hun if you need it . I would ring Dr catsells office this afternoon as you have this afternoon to ask for a recommendation of a decant allergist close to where you are now who will be sensible and not an idiot ;-)

Why you are flaring is always a question. Things that are most likely to make me flare are infection , stress and environmental factors like pollen , heat, mold etc .

have you changed anything- your brand of Rantitidine ? or anything else

In real terms you aren't on a high level of medications at all . Benadryl is useful and good for holding off and so is ceterizine . You need allegra- which is available over the counter - 180 up to 3 times a day , hydroxyzine 25mg up to 4 times a day , doxepin h1 and h2 blocker and mast cell stabilizer 10mg at night or ketieofen ( but needs importing ).or a mix of them
clomtron- stabilizes mast cells and is similar to benadryl. But its an either or . So because you are tolerating the benadryl its wise to stick with it ;-)

Increasing gastrocrom will help but may take a few weeks to kick in . Also you will need stock ;-)

I can see the allergist is a Muppet. Dr castells will have a list of sensible doctors us wide ;-)

I am glad you haven't needed to Epi yet hun. But i find I get to the point i need to and then i settle down significantly with all the intravenous offerings . I am doing exactly what you are right now hun . I epi'd last saturady , and am slowly moving my prednisalone down. i am on 15 mg today. Its a think safety first thing hun xxxx

This paper by these guys was published in 2010. They are in California and may be your doctors we are looking for ;-)

Clin Rev Allergy Immunol. 2010 Apr;38(2-3):125-34.
Contemporary challenges in mastocytosis.
Pettigrew HD, Teuber SS, Kong JS, Gershwin ME.
Source

Division of Rheumatology, Allergy and Clinical Immunology, University of California at Davis School of Medicine, 451 Health Sciences Drive, Suite 6510, Davis, CA 95616, USA.

This is Dr Teubers contact details, if its not close enough they will know someone sensible in LA ;-)
Suzanne S. Teuber, M.D.

Clinical/Research Interests

Suzanne Teuber specializes in allergy and clinical immunology with a particular interest in food allergies of all types and anaphylaxis. She aims to ensure that each patient is armed with knowledge of triggers and exacerbating factors as well as how to avoid accidental exposures and have a plan of action. Her research is in the area of characterizing tree nut and seed allergens, and investigating cross-reactivity among nuts, seeds and legumes. She is the training program director for the Allergy and Immunology Fellowship Program at UC Davis.
Title:

Professor
Specialty:

Rheumatology, Allergy and Clinical Immunology, Internal Medicine
Address:

Lawrence J. Ellison Ambulatory Care Center
4860 Y St., Suite 0400
Sacramento, CA 95817
Phone:

(916) 734-2737
Education:

UC Davis School of Medicine
Sacramento, California
M.D. 1987
UC Davis
Davis, California
B.S. 1982
Board Certifications:

American Board of Allergy and Clinical Immunology, 2003
American Board of Internal Medicine, 2001
Professional Memberships:

American Academy of Allergy, Asthma and Immunology
American College of Allergy, Asthma and Immunology
Select Recent Publications:

many hugs
Jose

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Hello to all, I have finally got my stomach boipsy and they are positve with mast cells in stomach lining and in the upper GI track., So with that said my Doc., hemotologist oncologist would like to start me on chemotherapy, as soon as next week, my tryptase levels are very high and I am getting very sick most all of the time. So I am kinda hoping that this will at least help me feel some what normal when I am done with chemo.
Seattle has some of the best Doctors in the Nation so I feel good about this, not sure what kind of chemo or what regimin I will be on but he said it will defintily get worse before better :( and this this won't cure my disease but hopefully slow the progression down of the Masto!
So I am preparing mentally and physically as much as possible. My kids I have to set down and talk with have'nt did that yet my 14 thinks I'm her enemy any way,lol.
Hope you all have a good night I feel like shhhhtttt and am going to bed to wake up the same way.....but always with a smile on my face!

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Hi Josie, Well , I guess I couldn't let you have all the fun - I shocked last night. Feeling better today, so far, and starting a Prednisone taper. I was actually feeling better all day yesterday until I took a drink of my Gastrocrom water and that seemed to start it. But, as we know, it could have been other things too!

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Hi GN,

if you have enough prednisalone, give yourself 3 days at 40mg . This - most of the time ( you know how we go ) will dampen things down enough so you don't shock again . A quick taper can open you up to reactions. I did 3 days at 40mg, 1at 25 , 3 at 15, 1 at 10 and today I am on 7.5 xxxxxxx

I kind of thought you were going to with the symptoms you were having . Could the water be an issue in a different area? Do you use bottles water at all ?

I get a happy awake day with steroids and an adrenalin lul i call it, then I sleep for a few days and gradually brighten up xxxxxx
many gentle huggles hun xxx
Jose

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Hi Susan,

Ok hun. I know this is very hard news. But with the right treatments the progression can be slowed. Like I said to you these chemo treatments get rid of the ckit mast cells . these are the ones that hang about and cause trouble when they should have died off . Only certain chemo's can be used with the ckit mutation - some don't work . So can you let me know what they plan so we can make sure everything is bang up to date medically and treatment wise for you xxxxx

I spent a year in bed with shock every 2 weeks for 2 years and I thought it would never end . But i took each moment as it comes , absolutely moment to moment and gave my body what it needed xxxx

I have teenagers too hun. 13 and 15 . My girl opened up to me 2 weeks ago as she hadn't come to see me for 16 months ( lives with dad close by ) she said she was scared i was going to die , but I haven't . her fear was making her distance herself from me . Also that she saw me so ill but couldn't help me xxxxx She now knows that just sitting with me and chatting helps me ;-)

Without knowing your exact numbers hun, i can't say 100% you wont die. What i can say is you are going to now get the treatments you need to stop this and that very few of us die from this - we need strong treatments , but you will come through this . I am going to highlight our chat to a couple of others who are either on chemo daily or are the other side of it xxxx How high is your tryptase sweets xxxx i suspect strongly that your illness has not suddenly got worse ( more mast cells) but that your doctors have just woken up and realized you need some treatment to bash the mast cells into submission . I say this because you have had this awful nausea xxxxx

We are all here for you in anyway we can be hunni xxxxxx

We do experience heamotologist and oncologists getting very excited when they see mastocytosis in more than just the bones . This is good in that they are wanting to help ;-) But can be scary when chemo is discussed and it starting very soon . History with other patients shows us that chemo does work to get rid of the mast cells which are immortal ( they think ) and by getting rid of these it stops the masto becoming aggressive . Even aggressive masto has good treatments which mean it is not a life limiting condition.

Please let me know what they prescribe as if they don't do a lot of mastocytosis they may benefit from advice from Boston ;-) Who are the world leaders ;-) I say this because your drug regiemne up to now had not been text book ;-) by increasing your cover it will absolutely help control your symptoms .xxxxxxxxxx

many many gentle hugs
Josie

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Hi gn, Been off the computer for a few days, at least the one at home. I'm a computer tech and stare at the screens all day long. I get home wiped out and just crash. Anyway, I live in Southern CA and know a doctor at UCLA that I saw a couple of years ago that wanted to get me into a clinical trial. Insurance kyboshed that, but that is another story. The doctors name is Dr. Gary Schilling. He is a Hematologist / Oncologist there. If he can't see you, I'm sure his office can make a good recommendation. I can tell you the people there are great.
I went to the med center there on referral to an Endocrinologist before I had been diagnosed. I took copies of my medical records, over 300 pages, which she and her assistant studied for over two hours. She came back with a scrap of paper on which was written mastocytosis. She said that she thought that was what I have and that she was not the doctor I should be seeing. When I got back home i looked up mastocytosis and could hardly believe what I was reading. It all fit like a glove. And, as they say, the rest is history. I hope this gives you a good lead to finding a doctor in LA to help you out. Now if you were coming to San Bernardino I could recommend a couple of doctors out here that have helped me a lot.
I'm glad you found us here. You will find that we understand what you are going through as we are doing the same. We are all willing to share in what we have learned from each other, our doctors, and in trying to understand what our bodies are telling us.
MASTO MUTANTS RULE!!Bwahahahahahaha. Sorry, couldn't help myself.
My best to you and yours. Dale

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Thanks Dale! I will try to call Dr. Shilling on Monday and see if they will see me. I don't have a diagnosis of SM - just Idiopathic Anaphylaxis or MACD. My Dallas doc is not sure what the diagnosis is because all the labs come back normal. The highest my tryptase has been is 10.4. I have had good results with the meds, especially the Gastrocrom, at least until 2 weeks ago when this flare started.
I really appreciate this forum and everyone's help!

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Hi,
I am new member. Where do I go to open a new thread on Mast Cells or Mastocytosis?
Thank you.

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Hi maizy xx

Go into you next to your picture slot
Once you have done that you will see journal, click that and do start journal . post it to members only hun xx. You can join the nord groups under groups ;-) we all hang out in there ;-)
huggles
Jose

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Josie, thank you for the information. I still need help.........LOL I do not know where the picture shot place is. I looked
around and did not see it so was not in the right area.

Maizy

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Hi maizy , Go to the top of this page ;-) right at the top, it will have you written , click on there and it will take you to your profile ;-) about half way down there is a bar with lots of words about halfway along it says journal
click on it and click new journal and then a txt box will come up ;-) Type away and then post ;-)
Jose

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Hi GN,

I hope you are well today xx and recovering well hunni xxx
Jose

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Hi Josie,
Thanks again for your help to get me where I can start a new thread.......decided not to do that as I went to the Eczema and
Mastocytosis discussion chat. That was basically what I was going to ask about.
Since Dec. have had rash and redness all over my face except the forehead. Terrible itching! Allergist tested me for dust mites,
mold and dog which were all negative. Did not have a dog at the time.......got a puppy 1st of Jan....but they knew I was getting one. Allergist did 36 patch tests on my back.......all negative. Allergist then sent me to dermatologist. He said you have eczema.
Got hydracortizone ointment........I am allergic to cortizone so used a little bit on a couple places to see if it worked.....it didn't.
He said he really didn't have anything that could help me. That was 2-13. My face stays red most of the time. Sometimes it is not as red and doesn't itch as much but in a day or so it is red, red and terrible itch.
I have been all over the internet to see if I could find anything that is like what I have. Happened to go to NORD Fri. a.m. and
what I read about mastocytotis caught my eye. Called my Primary Dr. right then and went in to see him an hour later. He said he
really not for sure what I have but he did some bloodwork.........one was the tryptase which takes a week to get results.
That same morning got lot of rash on right side of neck.......one area is size of a quarter.
Some things I noticed in the info I saw on this website was people saying they have fatigue, poor memory, etc. Both of those
are me. Going in for sleep apnea test & narclopsy test in March because of fatigue and fall asleep when on computer (hope I
stay awake to finish this........LOL), when eating, etc.
About me...........I am 75 years old, do not take any medicines, live in assisted living because of cerebellar ataxia and for high
risk of falling.
I have started using something I have had for a long time..........bag with gel in it and keep in the freezer. Used it a long time ago for something..........don't remember now what it was for. But........using it now for the itching on my face and it helps a lot but I need to find out what it is I have so can get rid of it or get it under control.
Thank you for any information you or anybody else has for me. Sorry this so long.

Maizy

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Hi Josie,

Thanks for asking, I am actually feeling much better today. I am not as reactive as I was before the shock. I hope you are progressively getting better after your shock a week ago too!!

:) Gaynell

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Gaynell, My Oncologist / Hematologist is from MD Anderson in Houston. That is where the Texas mast cell experts are. They are one of the few places in the nation doing much research with mast cells. Perhaps your Dallas doctor should talk to someone there for some guidance. I also know that he doctors in Boston are said to be good about responding to email. You will find their names in other posts. I believe one of the doctors is Dr. Castells that others have said does respond to emails and will work with your doctor to determine the best course of action to take.
So sorry you had to have the experience of a shock. You have received the normal meds given at an ER. Prednisone is one of the favorites it seems. I'm glad to see that you are being slowly weaned off of the prednisone. I was given a high dose one time for seven days with no instructions to taper off. When I ran out of prednisone I started feeling really horrible. I had a regular appointment with my GP. When I told her how bad I was feeling and that I was not weaned off the prednisone, but rather went off it cold turkey, she about came unglued. She prescribed a weaning off dose. It took over a week to be finally over that experience. Have you been given epi pens yet? One thing I have learned about shocks (personal experience) is that each one gets a little worse. Until I first used an epi pen, administered by my wife, I was scared to death at the thought of another attack. Don't get me wrong, even with an epi pen a shock is no fun, but at least it doesn't go to the extremes it could otherwise. One other thing to be aware of, an epi pen's effect only lasts about 20 minutes and starts to wear off. When you use an epi pen it is imperative that you go to the ER. The epi pen just buys you a little time.
I'm glad to read that you are doing better and hope you don't shock again anytime soon. My best to you and yours. Dale

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Hi Gaynell xx

I am glad you are doing better ;-) I am nearly there ;-) nearly back to normal xx huggles
Jose

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